Last Years of Long Lives: The Larvik Study

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Last Years of Long Lives

Last Years of Long Lives is a unique account of that period of old age which precedes death. Based on 400 complete individual histories and covering a twenty-year period, it examines the experiences of people over eighty years of age in three important areas: disability, family life and health care. Using the life-course approach to research, it reveals rich data about the contributions of formal and informal care and how life expectancy and experiences of disability interact with experiences of care. The reader is invited to conceptualise these phenomena as processes in continuous time – processes that are sometimes long and complex, sometimes short and simple – and learns about the four types of disability career before death. At the same time, the author presents a three-stage model of informal care and examines the main patterns of formal service use. Last Years of Long Lives presents a new way of looking at old age for students, researchers, practitioners and policy makers and gives a comprehensive picture of what has been called ‘the fourth age’. Tor Inge Romoren is Senior Research Scientist at NOVA Social Policy Research Institute, Oslo, Norway. He has worked as a physician in elder care and as a healthcare administrator, served as an adviser to Norwegian government at local and federal level and written widely in his field.

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Last Years of Long Lives The Larvik study

Tor Inge Romoren

First published in Norwegian as Den fjerde alderen in 2001 by Gyldendal Akademisk Postboks 6730 St Olavs plass, 0130 Oslo First published in English as Last Years of Long Lives in 2003 by Routledge 11 New Fetter Lane, London EC4P 4EE Simultaneously published in the USA and Canada by Routledge 29 West 35th Street, New York, NY 10001 Routledge gratefully acknowledges financial assistance from MUNIN (Marketing Unit for Norwegian International Non-fiction) for the translation of this book Routledge is an imprint of the Taylor & Francis Group This edition published in the Taylor & Francis e-Library, 2004. © Gyldendal Norsk Forlag AS 2001 1.utgave. 1. opplag 2001 All rights reserved. No part of this book may be reprinted or reproduced or utilized in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging in Publication Data A catalog record for this book has been requested ISBN 0-203-71653-1 Master e-book ISBN

ISBN 0-203-34547-9 (Adobe eReader Format) ISBN 0–415–30198–X (Print Edition)

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Contents

List of illustrations 1

Introduction

vii 1

The basic theme and purpose of the Larvik study 2 Limitations of the study 6 Plan of the book 7 2

Larvik: context and case

8

Some facts about Norway 8 Larvik: the town 10 Larvik: the framework 12 Serving the population 18 3

Research design, data, and key concepts

22

Establishing the study population 25 Data collection 26 Disability: definitions and measures 29 Caregiving and the caregivers: definitions and measures 33 4

The study population: its basic characteristics

41

Gender and age 41 Family structure 43 Occupations and socio-economic status 47 Causes of death 50 Notes 52 5

Courses of disability Background 53 Models and terminology 56 Life expectancy without disability and life expectancy with disability 58

53

vi

Contents ADL careers 61 A typology 69 Diseases and ADL states 76 Conclusion 80

6

Courses of family care

82

Primary and secondary caregivers 84 Caregiving careers 93 Caregiving by offspring: the caregiving careers of sons and daughters 106 Did it ever become too much for you? 118 Conclusion 129 Note 130 7

Courses of formal service use

131

Total use of separate services before death 133 The dynamics of the use of services 137 Individual careers 145 The probability and duration of different kinds of institutionalization 154 Conclusion 160 8

Looking back and summing up

161

Men and women 162 The generalizable value of the Larvik study 164 Implications for policy and planning 168 Final remarks: the fourth age 169 Appendix A Appendix B References Index

173 185 198 207

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Illustrations

Figures 2.1 2.2 3.1 3.2 3.3 4.1 5.1 5.2 5.3 5.4 6.1 6.2 6.3 6.4 7.1 8.1 B.1 B.2

Map of Europe showing Norway and Larvik Map of Larvik Mrs Nygaard: courses of disability, informal care, and service use Age- and cohort-composition of the study population The relationship of caregiving activities to each other Age at death in the study population The disablement process Life expectancy without disability Life expectancy with disability Dementia in the Larvik study, the Oslo study, and in Eurodem (a) Activities and phases in the caregiving career; (b) sequences in the caregiving career The most frequent transitions between caregiving phases Duration of total home care when the caregiver is a son or a daughter Pearlin’s stress process model Transitions between home, institutional use, and death The last years of the life course Genogramme for Case 351 Card for Mrs Nygaard

9 11 23 25 35 42 57 59 60 74 96 105 114 120 138 163 186 197

Tables 4.1 4.2 4.3 4.4

Marital status for the study population and for persons aged 80+ in Norway, 1981 The proportion of individuals with 0–4+ children The proportion with 0–4+ children in the Larvik area at time of death Household status in the study population

44 45 46 47

viii Illustrations 4.5 4.6 4.7 5.1 5.2 5.3 5.4 6.1 6.2 6.3 6.4 6.5 6.6 6.7 6.8 6.9 7.1 7.2 7.3 7.4 7.5 A.1 A.2 A.3 A.4 A.5 A.6 A.7 A.8

Occupations in the whole sample and in some sub-groups Distribution of various sub-groups by socio-economic status Primary cause of death ADL careers without improvement ADL careers with improvement A four-part typology for dependency trajectories Duration of ADL limitations by primary medical cause The distribution of primary caregivers The distribution of elderly persons with 0–4+ secondary caregivers Primary caregiving activities during the main support phase Primary caregiving activities during the escalation phase Distribution by type of institution, frequency of visiting, and duration The life situation of caregiving sons and daughters Sons and daughters who are primary caregivers; main support phase Sons and daughters who are primary caregivers; escalation phase Sons and daughters who are primary caregivers; institution phase Probability, duration, and number of stays in institutions Probability and duration of use of home help and home nursing services The function of the hospital in relation to the study population Medical reasons for need of care during nursing home episodes Six institutional careers Formal eldercare, Larvik and Norway, 1970–95: home nursing and home help Care measures, Larvik and Norway, 1970–95: institutional care The study population by birth cohort and gender Next-of-kin who participated and who refused to be interviewed The probability of experiencing four types of disability trajectories ADL careers among study participants with serious dementia Total duration of informal in-home care; effect of variables Did it ever become too much for you?

48 49 50 66 67 71 78 84 89 98 100 103 108 110 111 117 134 135 141 144 147 173 174 175 175 176 177 178 179

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A.9 Institutional career by EP characteristics A.10 The effect of selected independent variables probability of hospital admissions A.11 The effect of selected independent variables of hospital admissions A.12 The effect of selected independent variables probability of nursing home admissions A.13 The effect of selected independent variables of nursing home stays

180 on the 181 on the duration 182 on the 183 on the duration 184

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1

Introduction

One morning in January 1978 I trudged up the hills in the little Norwegian coastal town of Larvik on my way to the nursing home. Six months earlier I had been offered the position of community physician. I was starting my first task in my first real job. Behind me lay studies in medicine and sociology. My new job consisted of tasks that seemed to be of little interest to the local private practitioners of the time: care of the elderly, preventive services for children and adolescents, health work among welfare clients, and occupational medicine among local government employees. The municipality had combined these tasks in the creation of a new medical position – that of a public or community physician – the future shape and content of which I was left to define for myself. Working as a physician at Larvik Nursing Home was undoubtedly the most demanding part of this complex job. The nursing home had 118 patients and I was their only physician. It didn’t take me long to acquire an adequate picture of my area of responsibility in this little town of just over 8,000 inhabitants. From my vantage point at the nursing home, during collaboration with the home nursing service and home help service and during evenings and nights at the local emergency ward, I was able to observe how the last years of old people’s lives could comprise a number of distinct stages. It struck me how important it was to understand old age and care for the elderly as a process or a sequence of events, and I examined the literature for analyses that followed this perspective, with little success. In 1980 I decided to rectify this situation by embarking on a study of these aspects of the life course in advanced age, and the foundation was laid for the studies on which this book is based. From January 1981 I tracked all institutionalized and noninstitutionalized individuals over the age of 80 who lived in the town of Larvik. None of them is alive today; the last died in September 1999 at the age of 99.

2 Introduction

The basic theme and purpose of the Larvik study In this book I present analyses of three aspects of the last years of old people’s lives: • •

•

long-term disabilities – total duration, level of seriousness, sequences, and medical causes; the contributions made by informal caregivers through the different stages of old age – contents, duration, and sequence of various forms of informal care; and the elderly person’s pathway through formal services, with emphasis on duration and patterns of stays in hospital and long-term care institutions.

The aim of the study is to shed light on the total course of these phenomena from beginning to end, to present explanations for their different forms, and to analyse interactions among events in these courses. The way in which these events are interwoven is an important part of the web that forms the end of life in advanced age. The starting point of each of the courses may vary. Observations begin when a long-term (three or more months’ duration) or permanent event occurs within one of the three areas, even if it occurs before the age of 80. The course of disability begins when a long-term limitation in basic self-care arises. The course of informal care begins when close relatives or friends assume long-term social support. The elderly person’s tenure in the service system begins when he or she is assigned formal eldercare of any kind. The challenges of this research plan are discussed in a separate chapter on design and method and in connection with the separate analyses later in the book. The main questions I attempt to answer are: 1

When studying trajectories of disability: • •

• 2

What is the life expectancy with and without disability for those who have survived more than 80 years? What main types of disability careers do these people experience and how are these careers associated with age, gender, and socioeconomic status? What illnesses make the greatest contribution to various disability states?

When analysing trajectories of informal care: •

Through what stages and sequences does informal care pass, and what factors are associated with the duration of informal caregiving for this age group?

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• • 3

3

How do courses of informal care differ for sons and daughters as caregivers? What factors are associated with the experience of role overload during the total caregiving process?

When exploring trajectories of formal care use: •

• •

What is the probability in the 80+ population for admission into home care or into acute and long-time care institutions? What is the total duration of each episode of formal care? What factors contribute to any differences that occur in the probability or duration of different types of formal care? What transitions are made between home and institutions and between one institution and another in the years before death? What main courses of formal service utilization exist in this age group, and what factors are associated with these different courses?

The research questions and design of this study are inspired by life-course research (see Frønes et al. 1997; Hagestad 1990; Hardy 1997). Central topics in life-course research are the interaction between individual development and historical development of the larger society; the way in which the structure of society contributes to the lives of the members of each generation; and the way in which life courses change as society changes (Elder and Shanahan 1997). Although life-course research would be an ambitious description of the Larvik study, much of the thinking, some central concepts, and some methods of investigation are taken from that research tradition. The term life course refers to the sum of individual life trajectories. Every such trajectory, such as working life or family life, is analysed as a chain of states or roles. Working life could be defined, for example, by the sequence of job levels during one’s career, from a subordinate to an intermediary to a superior position. In family life, such dimensions as marital status and parental status are analysed. Central to the analyses are the duration, transition, and sequence of these states and the ways in which different trajectories are woven together to form continuous life courses (Elder and Shanahan 1997). The main topics of this study are frequency, duration, transition, sequences of and interactions among states of health, family caregiving, and the use of formal services. Although many concepts in life-course research are self-explanatory, I shall define the key concepts used in the analyses in this book. Trajectory refers to the main courses within the individual’s roles and experiences in, for example, family life, education, work, or health, and is often used synonymously with the word course. Trajectories consist of states – roles or situations in a delimited area of life that must be defined completely and with mutual exclusivity for that area of life. The way in which this is done depends on the research questions

4 Introduction to be investigated. In an earlier example, states in work life (subordinate, intermediary, superior) and family life (marital status, parental status) were defined. When states are defined completely and with mutual exclusivity, they describe a state space. When analysing courses of service utilization, for instance, the state space could be any one of the following: • • • • • •

at home without formal services at home with formal services in an assisted living facility in a nursing home in a hospital death

Duration is the time span from the beginning of a state to its end. The duration of a nursing home stay, for instance, is given by the difference between the date of admission on the one hand and the date of discharge or death on the other. Life-course research often characterizes the duration as a waiting time in one state before transition to another. Transition refers to a change of state within the state space – from one’s home to a nursing home, for instance, or from a nursing home to one’s home. A central interest in life-course research is the exploration of factors that contribute to explaining different durations in, and transitions between, states. States may be part of different sequences. In the case of service use, for instance, one can imagine the sequences: • • •

home care → nursing home → home care → nursing home → death home care → assisted living facility → nursing home → death home care → hospital → death

The objective of life-course research is to study both typical and deviant sequences, their distribution among individuals or social groups, and the ways in which they change over time and between generations. The life-course perspective is a research strategy often used in gerontology (see, for example, Quadagno 1999). Yet, paradoxically, the end of the life course is seldom explored, except in studies of death and dying (see, for example, Marshall and Levy 1990). Examining the literature, one gets the impression that the life course ends with retirement or the grandparent role. Hopefully, the Larvik study will contribute to an increased interest in life-course research for the last stages of old age. Most life-course studies belong to the group of longitudinal research designs, in which, by definition, (a) there is a data collection for each item or variable for two or more distinct times;

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5

(b) the subjects or cases analysed are the same or comparable from one period to the next; and (c) the analysis involves some comparison of data between or among periods. (Menard 1991: 4) There are many types of longitudinal research designs. When studying courses and trajectories – as in this study – data are anchored in individuals and individual change. Also, a researcher employing these methods typically focuses on when things happen and collects information about the timing of transitions. Such a study is event oriented (Giele and Elder 1998). Throughout the years, longitudinal studies have become central to gerontological studies. Since one of the pioneers – Canadian researcher, Betty Havens – published an overview (Havens 1995), the number of such studies has increased. As a consequence of the significance of the life-course perspective, gerontologists concentrate more and more on longitudinal studies. In the 1990s, there were many longitudinal studies about the oldest old, focusing primarily on psychological and social ageing and on health. Examples from European research are The Berlin Aging Study (Baltes and Mayer 1999), a study from London (Bowling et al. 1995), The CALAS Study (Israel) (Modan 1993), Lund 80+ (Svensson et al. 1993; a parallel study is currently being conducted in Iceland), and The OCTO Study (Malmberg et al. 1992). In addition, there are many longitudinal studies specifically exploring dementia. It was a Swedish research team that pioneered the study of ageing in different cohorts of elderly (Svanborg et al. 1980; Svanborg 1988). Longitudinal population studies are now being conducted in all Nordic countries (see also Avlund et al. 1995; Jylhä et al. 1992; Parker 1994; Slagsvold et al. 2001). But the flourishing of this research still does not provide answers to the central question that engaged me 20 years ago: How do individual courses of old age differ from or resemble each other? One important reason for the failure of researchers to respond to this question is that their studies are not event oriented – the researchers don’t collect data on the timing of events. Primarily they register states, such as disability or institutional stays at certain times – say, every second, third, fourth, or fifth year. Furthermore, they haven’t completely followed every individual to the time of his or her death, and their analyses tend to be conducted only at the group level. To the best of my knowledge, no study to date has been undertaken with a purpose, research questions, design, and data structure comparable to the Larvik study. No study has examined the oldest old from the beginning to the end of each course in an attempt to compare three different yet reciprocal courses, and no study has ensured that all important events

6 Introduction are dated continuously. It is my hope that the reader will be able to capture a more complete picture – just as I did – of the ends of the lives of 434 special people who achieved the age of 80, and in many cases lived far beyond it.

Limitations of the study The material in this study is based upon a limited group of old people – the very oldest – defined as the population over the age of 80 in one Norwegian town. The end of life for people who did not reach this age is absent from the analyses. The limitation to the very oldest is rooted partly in health policy, partly in practical considerations. Given today’s mortality rates, the probability of a newborn Norwegian boy reaching the age of 80 is 44 per cent; the probability for a girl is 64 per cent (Statistisk sentralbyrå 1999). In Norway, people aged 80 and over use two-thirds of the available formal care resources for the elderly. Three-quarters of our nursing home patients are now over 80 years of age (Daatland 1994) and, as in many countries, this is the fastest growing group among the elderly. Furthermore, it is obvious that if one is to study event histories prior to death, it is much quicker to acquire a complete set of material by beginning with 80-year-olds than by beginning with, for example, 70-year-olds. The people dealt with in this book belong to designated birth cohorts. They were born during the years when the nineteenth century was turning into the twentieth. They lived their lives through characteristic periods and historical events that affected their health and their social and family relations, making them different from other cohorts. The people who took part in this study grew up in relatively modest circumstances, as the children of turn-of-the-century industrial workers, craftspeople, peasants, servants, and seamen. They reached adulthood in the period between two world wars, a period characterized by economic depression – a situation that may, in fact, explain why 28 per cent of them remained childless. Their most prevalent occupations were homemaker, industrial worker, officer, cleaner, and housemaid. In midlife they lived through the Second World War and its after-effects. The lack of housing in Norway after the war meant that their children, who were then of marriageable age, often lived at home as newlyweds. Many of these children continued to live with their parents until their parents died or moved into long-term-care institutions. By the time the study population approached old age, the society in which they lived had become affluent. The economy was dominated by the service industry and a newly established oil industry. A dynamic, Scandinavian-type welfare state had been created around them, with a formal care sector growing and changing continuously. Thus the study upon which this book is built is limited by its age groups, the birth cohorts to which these people belong, and qualities of both the larger society and

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7

the local area in the period in which they were living. In Chapter 8, I return to the significance of these factors for the interpretation of the study results.

Plan of the book Chapter 2 consists primarily of background information. In it I have attempted to give the reader a picture of the town Larvik – the framework within which the lives of these 434 people unfolded. And even as their lives unfolded, so did history unfold around them, creating their possibilities and their options. The history of formal eldercare in Larvik was one of these historical contexts, and so the chapter ends with an analysis of Larvik’s eldercare in the period that it was used by the study population. Chapter 3 presents the design, data material, and analytical methods used in the Larvik study. Chapter 4 gives a short description of sociological characteristics of the study population, followed by the book’s primary message, which is divided into three chapters: • • •

Chapter 5: Courses of disability Chapter 6: Courses of family care Chapter 7: Courses of service use

It is in these last three chapters that I define further details of the research questions, present their answers, and give an account of the most important things to be learned about these elderly people. In concluding, I draw attention to the possible implications of this study for health policy and planning and for future gerontological research. And so I would like the reader to join me as I relive my 20-year journey into the lives of 434 elderly people from Larvik, Norway. Through the objective eyes of quantitative data, we catch a glimpse of their personal lives. And through the subjective eyes of qualitative data, we gain deeper understanding of the process we call old age. These 434 people, now deceased, formed a captive population, and my debt to their memory is incalculable. Their family members gave voluntarily and graciously of their time, their memories, and their feelings, to breathe life into the reality of growing old.

2

Larvik Context and case

Some facts about Norway Size • • • •

Norway is a relatively large but sparsely populated country in northern Europe. Land mass is 324,000 square kilometres. Population compromises 4.5 million ethnically and religiously quite homogeneous inhabitants. Comparable in size to Germany, with 5 per cent of the population, or to Italy, with 8 per cent of the population.

Economy • • • • •

Norway is a prosperous country, partly due to its oil industry: GNP per capita in 2001 was $US23,800 per person, as compared to $US19,500 in OECD countries overall. There are abundant fish, waterpower, and oil resources; 21 per cent of GNP came from oil extraction in 2001. Private consumption per inhabitant is $US12,200. Tax revenue per inhabitant is $US14,300. Private consumption is low in comparison to tax-financed public consumption. Income differences among social classes and occupational groups and between men and women are relatively small. 69 per cent of women and 78 per cent of men 16–70 years of age are in the work force, although a larger percentage of women (45 per cent) than men (10 per cent) work part-time.

Working population • • •

4 per cent in farming, forestry, and fishing 22 per cent in industry 41 per cent in private service

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NORWAY Larvik

Figure 2.1 Map of Europe showing Norway and Larvik.

•

33 per cent in public service (including health and human services provision)

Demographics Norway has an old population. In each of the following categories, it falls into one of the top four positions in the world: •

Life expectancy: men 76.0 years women 81.4 years

•

Proportion of the population 65 and over: men 12.6 per cent women 17.4 per cent

10

Larvik: context and case •

Proportion of the population 80 and over: men 3.0 per cent women 5.8 per cent

•

Total dependency ratio [{(population 0–14 years) + (population 65+)} ÷ (population 15–64)] × 100 = 54

Politics • • •

Constitutional monarchy with a bicameral Parliament. Since 1927, Labour Party the largest in Parliament, Conservative Party the second largest. Percentage of representatives in Parliament since 1953, minimum–maximum (2001 figures): – – – – – – – –

Communist Parties: 1–2 Socialist Left Party: 1–10 Labour Party: 38–52 Centre Party: 7–24 Christian Democratic Party: 8–14 Liberal Party: 1–12 Conservative Party: 17–34 Progressive Party: 3–13

(2001: (2001: (2001: (2001: (2001: (2001: (2001: (2001:

0) 23) 43) 10) 22) 2) 38) 25)

Left Centre Right

(Statistisk sentralbyrå 2002)

Larvik: the town To understand the 434 people who comprise our population, we begin with a tour of their town. Larvik is located on the coast in the most southerly part of Norway. It lies to the south-west of the capital city of Oslo, a twohour journey by car or train. The sea is visible from virtually everywhere in town, and the horizon stretches far out into the Skagerrak – the area of the North Sea that divides Norway from Denmark. Larvik lies like an amphitheatre at the bottom of a short, broad fjord. The amphitheatre functions as a dam for the great Farris Lake towards the north, surrounded by large, productive forest areas. From Farris Lake down to the fjord runs the Farris River; it was of crucial importance as a source of energy during industrialization, which took place early in this area. Characteristically, the river valley is called Hammerdalen or Hammer Valley. On top of the amphitheatre stands the largest beech forest in Norway, presenting a harmonious arch against the heavens from the sea. Sailing deeper into the fjord, however, you will see a conglomeration of railway tracks and industrial enterprises that have ruined most of the lovely promenade that once gave Larvik the designation ‘Naples of Scandinavia’.

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Structure Modern Larvik has four distinct districts. To the west of the River Farris and Hammerdalen lies Langestrand or Long Beach. This district consists of charming clusters of white wooden houses – at one time primarily workers’ homes built up around the town’s first industrial enterprise, the venerated Fritzøe Verk. This company had a sawmill and ironworks as early as the 1600s. Until it closed in 1868, the ironworks was Norway’s largest employer (Wasberg 1971). Today, in addition to running trade firms and a real estate development business, it operates primarily in the lumber and stone industry under the name Treschow-Fritzøe. Immediately east of the river, from the sea and right up to the beech forest, lies Larvik’s commercial and financial centre, Hovedbyen or the Main Town. This is also a residential area; most of the houses were rebuilt after major fires swept through the town in 1884 and again in 1902.

Figure 2.2 Map of Larvik. Note: 1 Larvik Nursing Home, Larvik Hospital; 2 Alders Hvile; 3 Hospitalet; 4 Bøkeskogen eldresenter; 5 Home Nursing Office, Home Help Office, Health and Social Services: Administration.

12

Larvik: context and case

Further east there are two contrasting districts. The older one faces the harbour in the areas around the railway line. This is Torstrand or Tor’s Beach, a mixture of workers’ homes from the first half of this century and a number of major and minor industrial enterprises. Larvik’s most important harbour area also lies here. To a greater degree than Langestrand, Torstrand has retained its character as a working-class district. Higher in the hilly landscape we find Byskogen – the Town Forest. It consists largely of residential areas developed since 1950, and is known as ‘the nicest part of town’. However, it is not merely the upper middle class that lives here, for between the affluent, spacious villas you will find council houses for welfare recipients and less grandiose houses built by the local housing association. Larvik is a small town. When this study began in 1981, there were 8,129 inhabitants. Of these, 2,000–3,000 lived in Hovedbyen, Torstrand or Byskogen, and about 1,000 in Langestrand. It took no more than half an hour to walk between the town’s administrative boundaries, for it was only 6.2 square kilometres in area. As you can see from the map (Figure 2.2), the nucleus of Hovedbyen comprises 6 × 6 blocks. Norway is a small-scale society. Only seven cities have more than 50,000 inhabitants, with the capital, Oslo, topping the list with close to 500,000. Two of the few things that are large in this country are its land area and – since the 1960s – its gross national product per inhabitant. Throughout the past 100 years Larvik has been squeezed in the middle of its three neighbouring communities, so, as the town grew, new urban areas were located in neighbouring municipalities. In 1988, Larvik and the surrounding municipalities were merged into one administrative and political unit measuring some 800 square kilometres and housing some 40,000 inhabitants. In 1981, when the Larvik study commenced, 23.3 per cent of the town’s population was over 65 years of age and 5.3 per cent was over 80. These figures compare to the Norwegian average at that time: 14.3 per cent and 2.8 per cent, respectively (Statistisk sentralbyrå 1995). This disproportionately large number of elderly people made the town an ideal laboratory for a study of the elderly. In Norway, as in the other Scandinavian countries, the demographic transition came early. The proportion of persons over 65 years of age was 9.4 per cent in 1950, but rose by 1.5 to 2.0 percentage points each decade up to 16.2 per cent in 1990. In absolute figures, this represents a doubling of senior citizens in 40 years (Statistisk sentralbyrå 1995). The figures for Larvik and its surrounding area correspond well with these figures.

Larvik: the framework In the study population, 67 per cent were born and lived their entire lives in the municipality of Larvik; 32 per cent were born in other parts of the

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country, and 1 per cent in another country. The large majority of that 1 per cent is from Sweden. Thus, I studied a relatively settled and homogeneous population, which is typical of Norway. What sort of backgrounds did these people bring to this study? What was it like to grow up in Larvik at the turn of the century? And what has it been like to be a resident of Larvik in the intervening years? Growing up: Larvik 1895–1914 Even at the turn of the century, the town in which the majority of our population was raised was a completely industrialized town. There were trading firms and craftspeople for all the usual consumer goods and equipment (Langeland and Wasberg 1963). The lumber industry, represented primarily by Treschow, dominated the industrial scene, but there were also an extensive tobacco industry, mechanical workshops, and an important glassworks. The foodstuffs industry (with the father of Larvik’s most famous inhabitant, Thor Heyerdahl, as an active leader), boat builders, and the textile industry were also represented. Industrial statistics from 1909 show that the town had 37 industrial enterprises employing 1,086 workers – about 30 per company (Helland 1914)). Data from the population censuses of 1900 to 1920 show that, besides work in industry and service in households, commerce and shipping were the most common occupations. Work in the transport and communications sector (railway, motorcar, telegraph) also began to be an important source of livelihood (Romøren 2001). It was in these occupations, then, that the parents of our study population made their living. And it was these occupations that provided the most viable vocational options to the members of our study population when they, themselves, became young adults. The economic situation in Larvik fluctuated considerably up to 1910. Between 300 and 400 persons received welfare relief from the municipality in the entire period between 1895 and 1914. The hardest year was 1903, with substantial unemployment (Langeland and Wasberg 1963). Considerable emigration, primarily to North America, indicates that, like the rest of Norway, Larvik did not have sufficient job options to offer its growing population. Young adults: 1914–20 The Scandinavian countries manoeuvred their way through the First World War as neutrals, resulting, among other things, in powerful economic activity, great profits, and the establishment of many new and short-lived businesses. There was a considerable demand for labour. Prices, but not wages, rose substantially. A few people made huge profits, while many families were badly squeezed financially (Langeland and Wasberg 1963). In the period leading up to 1920, ‘raw capitalism’ was practised, bringing

14

Larvik: context and case

hardship to workers, functionaries, and public-sector employees alike. Families with many children, the handicapped, and the elderly were those who suffered most, of course. Norwegian society was polarized, and Larvik was no exception. By 1910, an economic boom had begun in Larvik, and the resulting influx of workers aggravated the town’s housing problem. The municipality stepped in once again, although it failed to speak in a single voice. The Labour Party wanted the municipality to play the role of a developer by building houses and renting them; but the majority of Conservatives and Liberals wanted the municipality to play the role of a banker, by providing cheap housing loans (Langeland and Wasberg 1963). Eventually the Conservative/Liberal faction won, a position that the national Labour Party adopted after the Second World War, by establishing The National Housing Bank, which exists to this day. A great deal was accomplished during these years, but the housing problem grew steadily worse, nevertheless. In 1916, when the majority of the study population was in young adulthood, some married and even more considering marriage, a municipal committee led by one of the town’s foremost lawyers wrote: We went to Torstrand. We would never have believed that we had such a housing problem as we saw there. There are many old hovels, most of these are so shoddy and overcrowded that it serves as a strong reminder of the conditions in the poor areas of the major cities. In X Street, for example, twelve people live in two small rooms – children and adults of both sexes. Both here and in other places, tender, loving women’s hands had tried to decorate the home and make it a little festive . . . The young women stood with their children in their arms and did not know where to turn. Full of joyous hope, young and strong, they had married . . . We do not wonder that their courage is failing and that disease is gradually finding its prey. (Cited from Langeland and Wasberg 1963: 300; translation is the author’s) The welfare municipality While the study population was growing up, important socio-political schemes were being implemented. Norwegian historians use the term ‘welfare municipality’ to characterize this activity (Gronlie 1987). In the year 1900, an assisted living facility was established in Larvik, in 1911 a hospital, and in 1914 a tuberculosis sanatorium. The initiative to establish an assisted living facility came from the church. Towards the end of the 1800s the poorhouse, built in 1839, housed more and more old people who could not look after themselves, the children and the adults who were fit for work having been separated out by special

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schemes. In 1899, on behalf of the parish nurses’ committee, the parish priest applied for permission to take over the poorhouse and reorganize it as a modern institution ‘with a homely character’ for elderly people. The town council voted unanimously for this move in November of the same year (Romøren 2001), an example of the relatively widespread sociopolitical process that was taking place in Norwegian towns at this time (see Seip 1984: 151–5) The town’s physicians initiated the building of a hospital and a women’s association founded a tuberculosis sanatorium. Following in the footsteps of the church, both groups turned to the municipality for financial backing. The municipality contributed building capital and the physicians and the women’s association took responsibility for the operation. The state would contribute sickness insurance and finance hospital and sanatorium stays, whereas the municipality covered residence costs at the assisted living facility, pursuant to the poor relief laws. In addition, there were financial contributions from private charitable organizations (Romøren 2001). In addition to the assisted living facility, care for the elderly had, since 1736, consisted of the Hospitalet (Romøren 2001). This facility was now reserved for single elderly women, and housed 25 residents (Langeland and Wasberg 1963). Compared to the assisted living facility, which had room for a corresponding number of women and men, Hospitalet was regarded as a fine place to live. Many of the wealthier pensioners had to pay for part of their stay themselves. Formation of families and upbringing of children in times of crisis: 1920–40 The outer framework surrounding the lives of the people of Larvik continued to follow the Norwegian pattern. Unemployment was ever present; nevertheless, it would be reasonable to say that the situation never reached a state of hopelessness. According to the population census data, employment in manufacturing and handicrafts fell by 23 per cent for men and 33 per cent for women during the years 1920 to 1930. However, the fishing and shipping industries (primarily whaling and international maritime transport in Larvik) saw employment increase during this period by a figure almost corresponding to the decline in manufacturing jobs (Romøren 2001). Whereas tax revenues fell by 50 per cent from 1920 to 1939, expenditure on public assistance rose by 300 per cent. The municipality also initiated new programmes of emergency work and food distribution. In 1926, however, the town council rejected by a thin majority the granting of loans to people who wanted to emigrate to Canada (Langeland and Wasberg 1963). Larvik was not economically strong enough to implement new sociopolitical schemes between the two world wars, for it was plagued by

16

Larvik: context and case

insufficient tax revenues and ongoing payments for public assistance and emergency work. However, a new institution – Alders Hvile, or Rest Home for the Elderly – was started in 1926, privately initiated, privately purchased, and privately operated. To an even greater degree than Hospitalet, this project provided care for the upper-middle-class elderly. The assisted living facility that had been built in 1900 began to experience difficulty about this time, and the church wanted the municipality to assume responsibility – an ideal that was not attained until 1941 (Romøren 2001). These were the roots of the crucial socio-political question that haunted the citizens of Larvik in the decade following the war: can we accept a class system of care for the elderly and such a poor public-assisted living facility? The war and thereafter: 1940–50 The restless times terminated with the Second World War, particularly when Germany occupied Norway in the spring of 1940. In the course of the war there were a few clashes between German and Allied naval forces in the waters off Larvik, for the town lay at the very periphery of conflict. Yet the town itself was never the object of military attack. The greatest Norwegian losses during the war were civilian seamen, who died primarily during transport assignments for the Allies: 5,000 seamen compared to 1,000 soldiers. These events also affected the population of the maritime town of Larvik (Wasberg 1971). A watershed occurred in the lives of our study population in the year 1945, at a time when the average age was 48. Among those with children, more than half of their firstborns were 21, and a corresponding proportion of their lastborns were 15. Grandchildren were already making their appearance – 20 per cent of them were born by 1945. In 1949 there were 500 households on the waiting list of house-seekers in Larvik (Wasberg 1971), and among them were many of the children of our study population who wanted to marry. For them, the solution was to begin married life sharing a home with their parents (Romøren 2001). After 1945, one can see the contours of a society in the process of taking on new forms and creating new frameworks around the lives of our study population, their children, and their grandchildren. Employment in industry began to decrease, and that part of the economically active population that performed paid household duties for others was halved. The economically active groups that showed the greatest increase in this period were homemakers and employees in public administration and service industries (Romøren 2001). Reconstruction, growth, and the welfare state: 1950–65 The positive economic development after the war allowed the state and the municipalities to make large investments in public welfare. Larvik

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municipality invested great sums in technical infrastructure and school buildings (Wasberg 1971). The largest investment, however, was in a new institution for the elderly – a nursing home – which was completed in 1960. The town medical officer, later to become a member of the study population, had prepared the following requirement analysis: Currently Larvik has 823 old people over the age of 70. Of the 44 who are in Larvik Municipal Assisted Living Facility, 36 are strictly nursing-home patients. Those who belong in a nursing home, as stated in a lecture and presentation at a five-day course that was held in Oslo in November by experts, occupy the following categories: bedridden incontinent persons, those who must be helped to dress and undress, those who cannot climb stairs, those who must have food delivered to them, and those who are senile. In addition to the 36 elderly people referred to above, at Hospitalet and Alders Hvile, there are 13 nursing-home patients who should not be in these homes, but who have been forced to stay there for lack of options. Larvik also has ten nursing-home patients at Furubakken [the tuberculosis sanatorium from 1914]. That gives a total of 59 nursing-home cases. According to the parish old people’s care list, 22 bedridden old people are lying at home. The eight at the assisted living facility who are not strictly nursing home patients are people that Larvik Municipality must look after for other reasons, among others a number of elderly alcoholics who, if they got their own ‘homes’, would drink away their benefit and degenerate. So currently 67 places are needed. Because the number of old people will increase to about 1,100 by 1970, more places must be expected. (Romøren 2001; translation is the author’s) The installation was to provide room for 75 persons, 25 of whom were bedridden. In 1960 the local newspaper, Østlandsposten, wrote: The town’s greatest task has been completed Festively decorated, Larvik’s new nursing home received many guests yesterday on its opening day. And with expectancy and pride the approximately 90 guests admired the splendid building. Wing after wing was inspected, room after room studied, materials discussed and fine technicalities demonstrated. (17 June; translation is the author’s)

18

Larvik: context and case

Pensioners and old age: 1965–80 In 1965, 58 per cent of the study population were pensioners – 70+ years of age – whereas the rest became pensioners over the next three years. (By 1973, the retirement age in Norway changed to 67; prior to that it was 70.) The 1965–80 period was the welfare state’s classic period in Norway. Schemes were developed rapidly and extensively, taxes could still be increased without widespread protests, and the public economy was strong and stable. The municipality as an institution received a new function. Previously in Larvik, as in many other places in Norway, it had been a reception system for initiatives from below – from the inhabitants themselves or from various private organizations. Now it was an instrument for the implementation of important parts of a national welfare policy – of initiatives from above. It is typical of Larvik that the municipality was at the leading edge of socio-political development. When the state laid down its requirements, the municipality quickly and efficiently implemented a home help service, home nursing service, development of welfare housing, and a new wing on the nursing home – all between 1961 and 1974. Alders Hvile and Hospitalet attached themselves more closely to the public system of care for the elderly, receiving financial support and practical assistance for their operation. Thus, the class character of these schemes gradually disappeared, although formally they continued as private foundations.

Serving the population When the Larvik study commenced, the formal care service for the elderly in the town consisted of a conglomeration of measures and, as we have seen, each one had its own long or short history. Since then, this system has changed continuously over the years. In the following I give an overview of the scope of these services during the period when the study population was using them. I try to explain the content, admission routines, and payment systems of these services, in order to give the reader a glimpse of the workings of, and changes in, a Scandinavian welfare system. Home care At the core of these services are home help and home nursing. Home help refers to assistance with meals, housekeeping, home maintenance, shopping, and other household needs. Recipients pay for the help services, in accordance with a sliding scale stipulated by the municipal council. Up to around 1990, an executive officer at the social welfare office administered this service in Larvik. She received applications from the elderly themselves, from their families, from the elderly person’s doctor, or from health institutions in connection with discharge. On the basis of

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regulations laid down by the municipal administration, and often in consultation with the head of the home nursing service (who had offices two floors above), she allocated help-service hours. Home nursing refers to home health and personal care services provided in the home. In Larvik home nursing began exclusively as a daytime service. In 1975, the service was extended to provide nursing if necessary seven days a week, including evenings. It was not until 1990 that this service was extended to include night-time home nursing. The service is free for patients. Most requests for home nursing come from primary physicians, the hospital, or the nursing home. Until about 1990 the head nurse made the decisions about admissions and discharge. Institutional care Alders Hvile was an assisted living facility, i.e. a social institution providing a common household and 24-hour staffing for persons not able to live, or not interested in living, in their own homes, but not in need of continuous medical or nursing services. In 1981 the institution was still being run by the foundation, ‘Friends of the Elderly’, that had established it in 1926, but now the foundation worked in close collaboration with Larvik municipality. The elderly had to pay for themselves from the first day, in accordance with state regulations, with 80 per cent of their total income. The municipality had an obligation to finance the rest of its operation, as authorized by social welfare legislation. Alders Hvile had room for 31 pensioners, but these places were not in great demand. It was more expensive to live there than in Larvik Nursing Home. Moreover, Alders Hvile was old-fashioned and still had a poor reputation among the ordinary population as ‘the place for the gentry’. Admission procedures were highly informal. The head of the home nursing service – which had gradually become a vital institution in the town’s care for the elderly – usually functioned as a gatekeeper. Now and then the head of Alders Hvile and the manager of the nursing home negotiated with one another about exchange of clients: pensioners at Alders Hvile who had become more ill in exchange for patients from Larvik Nursing Home whose health had improved. Nursing homes in Norway are medically oriented institutions that provide 24-hour general medical care, nursing care, assistance with personal care activities, and room and board. Larvik Nursing Home was – as already demonstrated – the pride of the town’s social welfare policy and the centre of care for the elderly in the study period. Originally planned, built, and run as a combined assisted living facility and nursing home, it was reclassified as a pure nursing home in 1971 and extended in 1973 from 85 to 120 places. Applications for admission to the nursing home usually came from the town’s physicians, from the hospital, and sometimes from the old people themselves and their families. The admissions committee consisted

20

Larvik: context and case

of the nursing home’s head nurse, the medical supervisor (from 1978 to 1986 this person was the author), the head of the home nursing service, and two representatives from the Town Council. When places were vacant, patients living at home were given first priority; otherwise there was a danger that they might be admitted to the hospital, and this was not regarded as an efficient solution for their daily care. Moreover, the senior medical officer at the hospital, with whom we wished to maintain a good relationship in order to solve a number of other problems, detested such admissions. The head of the home nursing service, who knew almost all the families in the town that had elderly people in need of care, was in charge of prioritizing patients from their homes. Payment regulations at the nursing home – which changed several times after 1980 – were somewhat different than for Alders Hvile. The stay was free during the initial period, which lasted from one to three months. After that, patients paid 75–80 per cent of their current income for their stay. ‘Current income’ included such sources as public and private pensions and investment income. Real estate capital was not affected by the regulations; it was allowed to be given, undiminished, to inheritors. In 1981, it was decided to build Bøkeskogen eldresenter with 38 places. These were so-called ‘service flats’, i.e. non-institutional settings where services are available to meet unscheduled needs of residents at any time and where optional cafeteria meals are offered. In all the analyses in this book, I regard Bøkeskogen eldresenter as a service equivalent to an assisted living facility, because help was available on location around the clock. In this sense, the centre was, in functional terms, an institution, although formally and legally this was not the case. Up to the end of the 1980s, the caregiving system functioned formally as a rather uncoordinated organization. Nevertheless, in practice this endearing chaos was relatively well coordinated, primarily because it was small and transparent and because there was considerable stability among the key personnel for the various services and measures. Subsequent development had the primary goal of making it more streamlined and costeffective, leading to comprehensive changes on a number of levels. The municipal council decided to stop admissions to Alders Hvile in 1989, and the institution was closed in 1992 after what was, of course, a long and conflict-ridden process. The 13 persons still living there in 1992 (one of them from the study population) were moved to Larvik Nursing Home and Bøkeskogen eldresenter. Since 1990, all decisions concerning formal eldercare have been made by the same body: the ‘Implementation Team’. This team still consists of the central health care professionals in the service: ward supervisors at the nursing home, the medical supervisor, and the head of the section for homebased care services. Decisions now require a more formal process (written

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replies, right of appeal) and are made by the same professional body. Political representatives no longer participate in decision-making. Finally, mention should be made of Larvik Hospital. It is a well-equipped hospital of high professional standards that serves approximately 90 per cent of all patients in Larvik and its environs. The county municipality (Norway’s intermediate level of public administration – between federal and local government) owns, finances, and operates the hospital. It should be noted that hospital stays in Norway are free of charge for any citizen (or, put another way, are prepaid through taxes). A hospital situated in the county’s administrative centre, Tønsberg, covers most specialities outside of surgery and medicine for all inhabitants of the county. To this hospital travel, for example, patients from Larvik needing admission for eye diseases, gynaecological diseases, or neurological ailments. Geriatric wards and specialist services were practically non-existent in Norway at the time of data collection for the Larvik study, but since 1995 state authorities have been implementing a programme designed to develop geriatric services in every county. Larvik vs. Norway How representative of Norway is the supply of Larvik’s formal service system during the study period? Tables A.1 and A.2 in Appendix A show figures using ‘degree of coverage’ as an indicator. It is defined as the scope of the various services in relation to the number of people over 80. Looking at the broader picture, one may say that coverage for the elderly in Larvik was close to the national average. The exception is the home nursing service. It has experienced a low degree of coverage compared with the Norwegian norm, and thus one may expect the use of home nursing services in Larvik to be lower than average for the country in the study period (an issue that we examine in Chapter 7). The majority of our study population was born, raised, lived, and died in Larvik, and the history of the town is their history. Their financial wellbeing was primarily carved from the industries that formed the economic base of Larvik, and their social supports were largely found within the confines of the town. This is Larvik, where most of our study population grew to old age. This is the town that provided them with formal and informal services in the last years of their long lives.

3

Research design, data, and key concepts

In determining a research design, one must consider the type of data that would contribute in the soundest and most effective way to the research questions. In this case, the aim was to study patterns of development and changes in disability states, family care, and use of services, so it was evident that data from different periods would be needed. The Larvik Study, then, had to be longitudinal. However, there are many types of longitudinal studies from which to choose. I wanted to explore aspects of individual courses and to anchor my data in this phenomenon. The analytical units in focus, therefore, are processes experienced by single individuals over time, not single states in the study population at different times. Figure 3.1 illustrates this point. The figure highlights some core elements for a single individual – Case 62 in the study population, Mrs Nygaard – who was close to the mean values on several important variables (gender, year of birth, number of and relationship to children, informal care, formal service use, and illness and disability processes), albeit more distant for others (notably, marital status and age at death). The figure schematically displays courses of events in regard to disability and informal and formal care. The top line shows Mrs Nygaard’s course of disability, the middle line shows her course of informal care reception, and the bottom line shows the course of formal service use. Imagine that I had decided to conduct a traditional panel study with three waves: data collection in January 1981, January 1983, and January 1985. With data on disability states, informal care, and formal use of services, I would then have tried to construct Mrs Nygaard’s career based on information from the three waves. I would have learned about her first hospital stay, her family’s efforts in that connection, and her death. All other aspects of her career would have been lost. To prevent these huge gaps in her story, more frequent waves of data collection could have been arranged – every six months, for instance, or every quarter. To obtain a true picture of the focal events, however, the story would have to be mapped by date of occurrence – they would have to be event oriented (Blossfeld et al. 1989). For this reason, the research reported here is an event oriented longitudinal study.

1977

77 years

1978

78

1979

79

1980

80

Spouse dies

Study start Data collection, 1st wave

1982

82

1981

81

Figure 3.1 Mrs Nygaard: courses of disability, informal care, and service use.

Chronological time

Age

No formal service use

Home help

Home nursing

Nursing home stay

Hospital stay

Formal service use

No informal care

Practical help at home

Informal care in institutions

Personal care at home

Informal care

ADL 0

ADL 1

ADL 2

ADL 3

Disability

Data collection, 2nd wave

1983

83

1984

84

Data collection, 3rd wave

P62 dies

1985

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24

Research design Mrs Nygaard was close to 81 when the study population was established in 1981. She died almost four years later. She was married, and her husband was in fair health. They lived in a separate flat in the same house as their only child, a daughter, Astrid, who was employed full-time; Astrid’s husband; and three of the couple’s four children, aged 13 to 21. Mrs Nygaard and her husband had home help four hours a week from December 1977. On 1 January 1981, when the study began, Mrs Nygaard was in hospital. Three weeks earlier she had stumbled on a doorstep, and was suffering intense back pain. She could not even stand up. She was transported to Larvik Hospital and admitted to the surgical ward, where fracture of the spine was established. After four weeks of good nursing care and physiotherapy, she was discharged to her home and was able to look after her own personal care, although, from that day forward, Astrid helped her to perform her household tasks. In the autumn of 1981 Mrs Nygaard suffered two episodes of acute severe eye disease (uveitis, keratitis) and was hospitalized for seven and ten days, respectively, at an ophthalmic clinic. The next winter her husband died suddenly and unexpectedly while watching TV. In June, her home help was reduced to three hours a week. In the autumn her eye problems recurred and did so again the next summer (1983). She was admitted to the same eye clinic, once for six days and once for four days. Then in December 1983 she slid on one of her carpets, fell, and broke her hip. After surgery and a three-week hospital stay, she was transferred to Larvik Nursing Home for a further three weeks of rehabilitation. In spite of successful surgery and intensive physiotherapy, she became permanently dependent on help to walk, dress, and wash herself. Because Astrid was willing to take care of her mother, Mrs Nygaard was again discharged home, where home help was continued. In addition, she was offered home nursing care every morning. After two weeks she developed stomach pain and diarrhoea. Her daughter contacted her family physician and the home nursing service, and she was admitted the same day to the Larvik Nursing Home. She recovered from her stomach problems, but remained in the institution. After nine months she had a major stroke and died one week later, in the autumn of 1984.

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Establishing the study population The study population was established in January 1981. A list was received from the local Population Register in Larvik, with the name, date of birth, and address for each of the 434 people aged 80 and over living in this municipality on 1 January. When the study began, the age range was large: from 79 to 100 years, with an average of 83.7 years. The proportion of men and women at different age levels at the beginning was insignificant. The average was 83.8 years (from 79 to 95) for women and 83.5 years (from 79 to 100) for men. (See Table A.3 in Appendix A.) Not only were persons less than 80 years of age discarded from the analyses in the Larvik study, individuals who were born before 1901 and reached the age of 80, but died before the study started, also fell outside the parameters of the study. Figure 3.2 illustrates this phenomenon by displaying 12 hypothetical individuals from three different birth cohorts. Now let’s focus on the term birth cohort, which has already been used several times in this book. The word cohort is derived from a Latin word that originally designated a small Roman troop unit – men who marched in step. A birth cohort has had many of the same historical experiences Line of Life 1881

Year of birth 1891 1901

1951

Year of death 1961 1971

1981

1881 cohort 70 years 80 years 90 years 100 years 1891 cohort 60 years 70 years 80 years 90 years 1901 cohort 50 years 60 years 70 years 80 years

Figure 3.2 Age- and cohort-composition of the study population.

26

Research design

through life; in this sense they have been ‘in step’ throughout their lives. Generation has a similar meaning, but the concept is broader and usually includes more than one cohort. Because it is a precise concept often applied in social research, the term cohort is used many times in this book. As can be seen in Figure 3.2, the entire study population from Larvik does not yield a precise picture of the life course after 80 in this town during the study period. When the research questions demand exact figures for events and experiences from exactly 80 years of age onwards, data are limited to the 135 persons who were born between 1900 and 1901. When the composition of age groups and cohorts is of less importance for the research questions or statistical methods, data from the entire study population are utilized. Technically speaking, the Larvik study was given an event oriented, multi-cohorted panel design (Menard 1991). It is event oriented because of the interest in continuous individual patterns at the end of old age. It is multi-cohorted because it consists of people born at different times. And it comprises a panel because the same individuals are studied throughout.

Data collection Two types of data are used in this study: register data and personal interview data collected from the primary caregiver after the old person had died. Register data The register data cover stays in hospitals, nursing homes, and assisted living facilities, and episodes of home health care and home help. Regrettably, no systematic register information is available in Norway on the use of general practitioners or medical specialists. As mentioned above, data on the use of formal care were also collected retrospectively. Retrospective data on the study population’s hospital stays are recorded back to 1970. Retrospective data on the study population’s use of long-term care institutions or home care were available for all relevant years, and are included in the data set. For every period the elderly people spent in institutions, I had access to medical records, including nurses’ reports. Hospital records from a total of 910 stays and 465 records from stays in long-term care institutions have been carefully read in extenso. When people in the study population died, I received copies of death certificates from the local Board of Health. These data represent the end point of research for each individual, and also serve as a control for other information. The observations in the register data set are 100 per cent complete. In addition, all 434 elderly people were followed, and it was only through death that they were lost to the study.

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Personal interviews Interviews were conducted by contacting the person who was last listed as next of kin in the care system’s archives before the old person died. This information was usually held by a nursing home, hospital, or assisted living facility. In a few cases the next of kin was dead, but, in each of these cases, another person who had been close to the deceased was found as a replacement. For the very few who did not die in an institution (hospital, nursing home, or assisted living facility) and who had never been in contact with the formal health or eldercare services, the old person’s family was contacted through neighbours. Informants were contacted by a letter followed by a phone call, and 89 per cent agreed to be interviewed. As seen in Table A.4 in Appendix A, there appear to be no differences between the 388 interviewees and the 46 who refused to be interviewed. This information yields strong support for the assumption that there is no significant bias in the next-of-kin sample in the Larvik study, and that we have a realistic and reliable picture of the period covered by the study. In 79 per cent of cases, the person with whom we talked had been the primary caregiver (criteria and definition of this concept are given later on in this chapter). Interviews with the primary caregiver covered: • • • • • • • •

background information about the old person (work, hobbies, personality); family structure in the form of a genogramme encompassing four generations (see Figure B.1 in Appendix B, for an illustration); the course of informal care; health and functional loss of the old person; the experiences of the caregiver through different stages of the caregiving period; the experience of sharing a household with the old person and movements before, during, and after the caregiving period; decisions about formal service use; and background information about the caregiver and his/her spouse (if any).

The interview guide is reprinted in Appendix B, p. 187. Most of the interviews (356) were conducted in the informant’s home by two nurses experienced in geriatric home care; I undertook 18 of the interviews myself, and 14 were conducted by a nurse who had been hired to interview family members living outside the Larvik region. All these data are included in the material. A register card containing information on the use of care served as a support in the interviews and as a check that core information from the caregiver was correct. In the original, these cards (my ‘patient archive’)

28

Research design

were 15 × 21 cm (8.25 × 6 inches) in size. A system of lines and colours was developed to show the old person’s career as regards use of formal services and his/her course of disability. Relevant additional information from hospitals, long-term care institutions, and home care was added. For an example, see Figure B.2 in Appendix B. In order to make the interviews as conversational as possible, the interviewers learned the guide more or less by heart. Although 48 questions were to be touched upon during the interview, their order could be changed, depending on the course of the discussion and informant’s initiatives. Once, during an interview, I hadn’t had a chance to sit down before the informant started to talk. Two hours later she had answered almost every question on the guide, yet I had scarcely opened my mouth. The interviews lasted between 15 minutes and 6 hours, with an average of 2 hours and 20 minutes. Virtually all our informants seemed to appreciate the opportunity to talk with us about this aspect of their lives. For many of them, it was the first time they had discussed these experiences with another person. Notes were made during the interviews, and a more detailed copy was written immediately afterwards. The interviewers and I met twice a month during the interview period to review the detailed copies of all recent interviews, to monitor the interviewing process carefully, and to discuss the interpretations. Information from the detailed copies of the interviews was converted to variables coded for computer processing. Two female research assistants worked on this task independently until they reached an inter-coder reliability of 0.80. Then they continued separately. Here also, the register cards functioned as a support. Finally, the author coded all information from the hospital and longterm care records (e.g. dates and places of residence at admission and discharge, diagnoses, and disabilities). The same applies to use of home care and to death certificates with causes of death. Through cross-checking, the data processing also served as a renewed control of the quality of the register data and the data supplied by family informants. Statistics The road to the results presented in this book is covered with statistical analyses, many of them quite intricate. In general, I have chosen to spare the reader from such material; some of the most important of the more technical analyses are, for the sake of documentation, located in Appendix A. The reader is informed of cases in which the findings are uncertain. When no mention is made to the contrary, the reader can assume that the results are statistically significant. The letters N and n in the tables designate the number of observations, percentages, averages, or other calculations build upon in different main groups (N) or sub-groups (n).

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Disability: definitions and measures As regards disability, we used case history data from hospitals, nursing homes, assisted living facilities, and the home nursing service, and from interviews with the closest relatives after the old person had died. In a very few cases, information was inconsistent, in which case we chose to follow the description provided by the various health services. The reader will recall that two nurses served as research assistants in this study, meeting with and interviewing most of the close relatives that provided most of the family and caregiving data for this study. Neither the research assistants nor I have personally observed or tested the members of the study population; rather, we have relied completely on descriptions of functional level over time from second-hand sources. Nurses’ descriptions in the official records have been the most important source of information from formal services. They have provided day-to-day details under periods of critical illness – otherwise more irregularly, rarely less than quarterly. Long-term disability In the present study, only long-term disability that affected basic personal care is measured. As mentioned in Chapter 1, long-term constitutes three months or more. Normally, a disability lasting for less than three months was not measured. The classic example of this type of short-term disability is an acute, serious disease from which the old people recovered, and were able to care for themselves again in terms of measured functions before the three months had expired. Typical examples are hip fracture without complications, cardiac infarction, and minor stroke. Given the three-month limit for disability, three months was also the unit of time used in the measurements. There were several reasons for choosing this unit of time. First, I was interested in studying disability that seriously affected the need for help. Second, this length of time gave the opportunity to describe changes that occurred gradually, because the exact date of a change of state is, in itself, often meaningless. Although a person who has a stroke or breaks a hip usually has no difficulty defining the exact moment the disability occurred, in a person suffering from dementia, a cancer patient, or a person with Parkinson’s disease, the disease process and the development of disability follows a different rhythm. In these cases, it is only possible to refer to changes over time. A three-month period, then, is more realistic in relation to changes in the ability to take care of one’s basic needs. Finally, this length of time was chosen to enable comparisons between these findings and those of similar studies that have utilized this measure. All long-lasting serious disabilities in each individual were measured from the first time any disability occurred to the time he or she died.

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Research design

In cases in which the time of transition to a particular category of disability was impossible to establish with certainty within a margin of three months, the variable was coded as ‘missing’. Nine transitions fit into this category. Basic personal care Basic personal care is measured by an Activities of Daily Living index, or ADL index. An ADL index is commonly used to shed light on more comprehensive disabilities in old age. It was created originally in the 1950s by Sidney Katz, a specialist in internal medicine (Katz and Apkom 1976), and is used worldwide today. The reliability and validity of the measure have been tested, but more research in this area is still desirable (Bowling 1991; McDowell and Newell 1996). Because many variations of the ADL index are used (Fillenbaum 1987), it is important to specify exactly which variant and which measurement technique are being employed. The results can vary somewhat, depending on the procedure (Wiener et al. 1990; Jette 1994). Only the functions that the old person received help in performing – regardless of the type of assistance – were measured. The help may consist of advice, preparations to make the task easier to perform, or direct physical assistance. A person with functional limitations who carries out a function adequately with the help of a technical aid was regarded as independent rather than disabled with regard to the function concerned. An example is a person who can walk, but only with the help of crutches. In this study we measured six ADL functions: • • • • • •

walking about indoors on a flat floor; getting in and out of bed; dressing oneself (indoor clothes and shoes); washing oneself (by using soap, water, and a face cloth to wash upper and lower body and legs, or by taking a bath or shower); going to the lavatory (appropriately fixing one’s clothes, sitting down, cleaning oneself, and getting up from the toilet); and eating (e.g. slices of bread and dinner, with something to drink).

These functions were chosen to secure comparability with other relevant studies. Strictly speaking, indoor mobility is not an ADL item, but we disregard this detail here. Be aware that, contrary to the work of Katz and others, continence is not included in the list and is different from ‘going to the lavatory’. It should be added that defining and measuring function in this way is relatively narrow, compared to how we perceive the phenomenon and use the word in everyday settings. ‘How does he function?’ we ask of a sick

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or frail person, usually thinking of many more abilities than those included in the ADL measure. For the purpose of this study, disability is grouped into four stages or states: • • • •

ADL-0: ADL-1: ADL-2: ADL-3:

no long-term limitation of ADL functions 1–2 long-term limitations of ADL functions 3–4 long-term limitations of ADL functions 5–6 long-term limitations of ADL functions

By and large, the ADL index is hierarchical, meaning that the functions are usually lost one by one, in more or less the same order (Ferrucci et al. 1998). First comes difficulty in walking and in carrying out personal hygiene, which corresponds to ADL-1. The reader can imagine a person who always needs an arm to hold when walking or who requires assistance in washing. As a rule, this stage is followed by difficulty in getting in and out of bed and in getting dressed. These problems, together with the ADL-1 problems, are most common in the ADL-2 group. A person in this state will often be dependent on a wheelchair. Finally come difficulties in managing the lavatory and eating. Along with all the abovementioned limitations, these problems are typical for persons in the group ADL-3, who are usually bedridden. During the coding, it became obvious that many people in the study died after a short period of critical disease during which five or six ADL limitations were experienced. Some of these individuals had not previously experienced any ADL limitations or any serious disease. If nothing other than the criterion for ADL-3 (five or six long-term functional limitations) had been used for such cases, it could seem as if many old people go through life and die without ever having been seriously ill or dependent on help from others. This would give an incorrect picture, and could have unfortunate consequences for the health policy, because the estimate of the help required by old people would be too low. The problem was solved by dividing ADL-3 into two sub-categories: ADL-3a and ADL-3b. ADL3a retained the criteria for the original ADL-3: five or six long-term functional limitations. The criterion for ADL-3b became five or six ADL limitations lasting less than three months and caused by a disease that leads directly to death. The ADL functions are different from the so-called IADL functions or Instrumental Activities of Daily Living. The latter consist of household tasks, such as preparing meals, washing up, doing the laundry, and paying bills. In addition, IADL also measures the ability to use public transport, manage the telephone, and handle medicines. All in all, the IADL index measures functions that are important for being able to live alone. The IADL functions are systematically lost before the ADL functions (Spector et al. 1987; Nordström and Thorslund 1991). Thus cases that

32

Research design

require help to perform IADL functions only are not included in the analysis because I simply do not have good enough data on these people. Their cases are explored only indirectly in Chapter 6, where the content and duration of practical help received by the old people in carrying out household tasks is analysed, based on information from the relatives. Individuals in our population who were shown to have lost IADL functions are categorized as part of group ADL-0 in the following calculations. ADL-0 – i.e. no long-term ADL limitations – may, then, imply loss of IADL functions. Whether or not IADL functions are lost is therefore not considered when analysing courses of functional loss. Diseases Diseases that led to disability are registered in the form of diagnoses made and recorded by the physician or physicians responsible for the treatment. In every case of stays in acute or long-term care institutions, the coding system ICD-9 was used. The International Classification of Diseases or ICD is an old, well-established coding system for medical diagnoses that is used worldwide; new versions are published regularly. ICD-9 was used until the mid-1990s when it was replaced by ICD-10. In a very few cases, where the wrong code was used in the medical record or the symptoms were clearly interpreted incorrectly, the diagnosis has been corrected. The same applies to diagnoses of the cause of death. Dementia The diagnosis dementia is used if symptoms of cognitive impairment lasted for more than three months and the criteria defined in the third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-III) (American Psychiatric Association 1987) are fulfilled. These criteria are loss of memory plus loss of cognitive function (reasoning, judgement, and language) and/or personality changes (Engedal and Haugen 1991). Except for the requirement for duration, the criteria I use are, in practice, the same for moderate dementia and serious dementia in the latest edition of ICD-10. ICD-10, which has been used in Norway since 1997, has introduced an additional criterion to those listed in DSM-III: the degree of care required by the person with dementia. If patients satisfy the criteria in DSM-III without affecting their ability to cope with everyday life, they are designated mild in ICD-10. If patients are unable to manage without help from others, their dementia is called moderate; if they need continuous supervision and care, the case is called serious (Engedal and Haugen 1996). ICD-10, however, requires a minimum of six months’ duration before the state is designated dementia. The relationship among degrees of dementia, IADL limitations, and ADL limitations is in no way unambiguous. It is important to remember that

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these phenomena differ. I use the expression serious dementia for what is analysed in the Larvik study, partly to emphasize that the DSM-III criteria are interpreted relatively stringently, partly to underline the relationship to the ICD-10 typology – although the criteria for serious dementia in ICD-10 are not fully coincident with mine. Psychoses are not included in this definition; nor, obviously, are depressions or acute confusion. Acute confusion was not uncommon in the Larvik material, especially in connection with serious disease or surgical operations. Loss of memory alone is not regarded as dementia. With the type of data at disposal in this study, it is not possible to separate different dementia states like Alzheimer’s disease and vascular dementia. Nor is this differentiation necessary, given the research questions posed.

Caregiving and the caregivers: definitions and measures Caregiving The term caregiving is not a scientific expression, yet it has a fairly precise meaning in everyday speech. The Norwegian sociologist, Kari Wærness, has pointed to some important shades of meaning (Wærness 1982). Caregiving indicates a relation between two or several persons. The person who performs the caregiving usually shows consideration and affection towards the person in need of care. The phenomenon is connected to both feelings and norms. Within family relationships or relationships between friends, many regard care as something they have a duty to give, and often, also, a right to receive. Wærness distinguishes between four types of caregiving (Wærness 1982: 22): • • • •

care based on balanced reciprocity; personal provision of services (e.g. extra work like ironing and meal preparation that women traditionally do for men in a partnership); spontaneous caregiving services (help to people who are met casually); and caregiving work.

Caregiving is work performed for the good of a person in need of help as a result of failing health or reduced ability. Children, handicapped persons, and the elderly are the largest groups of people to receive such services. In this study, the terms caregiving, caregiving activities, and caregiving work are used synonymously as defined in Wærness’ typology.

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Research design

The primary caregiver A caregiver is a person who performs caregiving. The research literature in gerontology is often based on varying and imperfect definitions of what constitutes a caregiver. This problem not only produces obscure results, but creates difficulty in comparing studies. Robyn Stone (1991) has shown how the term caregiver is defined according to different criteria in the research literature, namely: • • • •

the type of care provided (e.g. nursing, practical help, emotional support, financial support); the extent (volume), frequency, and duration of the caregiving; the relationship of the caregiver to the recipient of the care (e.g. type of family relationship, friendship); and the characteristics of the care recipient (e.g. age, level of functioning, illnesses).

The first three criteria were applied in this study. In order to find candidates for the role, the closest relative was asked who (relationship) had given what type of care. Then it was determined who had carried out the most time-consuming tasks most often and for the longest period (extent/volume). The person who, on the basis of these criteria, was responsible for the greater part of the informal care received by the old person was taken to be the primary caregiver. The other persons in the network of helpers were designated secondary caregivers. In the text below, the term primary caregiver is sometimes abbreviated to NOP (in Norwegian, nærmeste omsorgsperson or ‘closest caregiver’) and the abbreviation EP (for ‘elderly person’) may be used to refer to the elderly person in the relationship. The content of the caregiving work In the analyses in this study I operate with three types of caregiving activities: • • •

contact practical help personal care

These three activities denote an increasing amount of caring work. It is also usual for the last two categories to include certain aspects of the foregoing activity or activities. The three activities can be visualized as three concentric circles, as in Figure 3.3. The innermost circle symbolizes the activity of contact, next comes the circle depicting practical help, and finally the circle symbolizing personal care. In this type of figure the circle

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Personal care ctical help Pra

Contact

Figure 3.3 The relationship of caregiving activities to each other.

representing personal care also includes both the circle depicting practical help and the circle depicting contact; and the circle for practical help will include the circle for contact. In the analyses in this chapter, it is assumed that the caregiving activities conform to this structure or are related to each other in this way. When it is stated below that the NOP did caring work in the form of contact, it means that – according to the information gained from the interview with the relative – the primary caregiver ‘merely’ provided contact, and did not carry out any of the other caregiving activities, except sporadically and incidentally. If the caregiving work is characterized as practical help, this means that the interview indicated that this was the primary caregiving activity, but it goes without saying that contact was also involved. Correspondingly for personal care: even though this was the primary activity, it is assumed that this form of care also implies certain aspects of practical help and contact. In all of these cases, however, the analyses refer exclusively to the frequency and duration of each of the three primary activities. Technically, the three activities represent a grouping of seven different values in a variable describing what the interviewee said that the NOP did during different phases of the caregiving career, controlled against and supplemented by data from the public health and social welfare services. The following definitions show which of the activities are grouped together.

36

Research design

Personal care includes three types of activities: 1 2 3

assistance in carrying out one or more ADL functions (indoor mobility, dressing oneself, washing oneself, going to the toilet, eating); watching over a person suffering from serious dementia in old age, as defined by the DSM-III criteria (loss of memory, plus other cognitive impairment) and/or changed personality; and providing personal care for someone with acute confusion or suffering from serious anxiety or depression.

The majority of persons with serious dementia will sooner or later also show failing ADL functions, and will usually require all-day supervision. However, regardless of the person’s ADL status and the extent of the caregiving work in the course of 24 hours, caring for a person with serious dementia is considered to deserve the designation of personal care, provided that the patient’s cognitive impairment satisfies the criteria used to define serious dementia. Practical help is defined as assistance other than help with ADL functions. Examples are housework (washing clothes, cleaning the house), shopping, transporting, preparing meals, using the telephone, paying bills, checking on medicines, and maintaining house and garden – roughly speaking, household tasks or IADL functions. Checking on an elderly person (‘popping in’ regularly to ensure that nothing is wrong, e.g. in the case of persons with mild dementia) is also regarded as a caregiving activity belonging to the category practical help. Contact means being available for the old person in a permanent and committed way, which the relative describes as being different from a reciprocal family relationship or interpersonal relationship. It is often difficult to make the distinctions that satisfy these criteria. Being available for the old person obviously also involves reciprocity. Regardless of the level of need, the old person almost always has something to give in return – if nothing more than the important personal experience of feeling needed. For my purpose, however, these distinctions are not important. All careoriented interplay that does not include anything other than sporadic and very brief practical help and/or personal care is placed in the contact category. Perhaps this type of activity originates from what, in everyday speech, is called ‘bothering about’ or ‘being concerned about’, a fundamental dimension of all that is expressed by the word care (or the Norwegian word omsorg and the German word Sorge). Emotional support can be said to be one side of the caring behaviour referred to here as contact. With one exception, the analysis of functional impairment (Chapter 5) refers to long-term functional disability – for three months or more. In the analyses of caregiving (e.g. Chapter 6), the contact, practical help, and personal care described by the relatives or in the recorded data are not restricted by a requirement that the care should last as long as this to be

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included. Such a requirement would lead to the loss of important information. For example, if one week’s in-home care prior to the hospitalization of a person who had had a stroke or was dying of cancer is not included, and therefore remains hidden, the picture of the caregiving career would be incomplete. Most caring situations of this kind led to a stay in an institution from which the old person did not return home. On the other hand, one week of practical help or personal care to someone with acute, temporary influenza, for example, is not recorded as a change in the caregiving process. Such an activity does not require a transition from, for example, contact to practical help. Totally sporadic help is excluded. The same applies to a change of caregiving category during a hospital or nursing home stay from which the old person returns home, and then requires the same kind of informal care as before (cf. Mrs Nygaard’s first four stays in hospital; see Figure 3.1 on p. 23). There are numerous incidents of this kind, some of which are discussed in Chapter 7, on the use of formal services. I could have operated with two terms: primary caregiver and primary contact. The latter term would then have been reserved for relatives of elderly persons who were not dependent on help or personal care, and would clearly demonstrate that not all old people require more care than other people do. However, two sets of terms would have been too complex; so, for practical reasons I use only the one term: primary caregiver, often referred to merely as the caregiver and abbreviated NOP. Demarcation methods The definitions of primary caregiver and of the three main caregiving activities led to problems of demarcation. For example, the predominant tasks performed by the caregiver may have changed over time, and usually did. Exactly when did the caregiving change from practical help to personal care of a relative? In many cases the amount of caregiving work the caregiver did on each occasion (in terms of time spent), the frequency of the help, and where the caregiving took place (e.g. in the old person’s home, in the caregiver’s home, at the hospital, in a nursing home, or in an assisted living facility) also changed in many cases. Sometimes a new caregiver may have replaced the first one. The duration of the different types of help also varied, and the same applies to the total caregiving career. In the following paragraphs I present the reader with four cases showing how the role of primary caregiver, the various caregiving activities, and the structure of the caregiving career became demarcated in practice. In this book, 26 cases or vignettes are presented to illustrate facts about disabilities and informal or formal care. The names, and some information that has no relevance to the phenomena described have been changed to protect the identity of the persons portrayed. To return to the story of Mrs Nygaard:

38

Research design Mrs Nygaard (see p. 24) suddenly needed help after a fracture of the spinal column. Her daughter, Astrid, began to provide practical help in the form of housework. She did this work for three years, occasionally assisted by her husband or children. During this time, her mother was admitted to hospital four times for eye disease, but did not need assistance in carrying out ADL functions, although her need for practical help increased with each visit. The situation changed when Mrs Nygaard broke her hip. Astrid provided personal care for two weeks after the stay in hospital, until her mother was admitted to a nursing home because of an acute gastric infection. This meant that Astrid changed her caregiving activity yet again by becoming the caregiver for a relative in a nursing home. In Mrs Nygaard’s case, the primary caregiver is relatively easy to identify. The different caregiving activities, and the order and duration of these, can also be clearly delimited and are easy to classify.

The caregiving career took a different course for Mrs Bakkane’s primary caregiver. When Mrs Bakkane became a widow, she moved in with her daughter, Kari. Nine years later, Mrs Bakkane was beginning to require constant watching, because she was starting to show signs of dementia. At this point, Kari began to assume various household tasks, such as the administration of her mother’s financial affairs. This phase ( practical help) lasted about a year, and was followed by five years of personal care. For the last eight years of her mother’s life, Kari (as in the case of Mrs Nygaard and her daughter, Astrid) was the primary caregiver for a relative in a nursing home. Here the transitions are more difficult to differentiate, as is often the case with dementia, or in connection with other chronic diseases that develop gradually over time. It can be said, however, that Mrs Bakkane’s daughter provided practical help for about a year and personal care for about five years, after which she was caregiver at an institution for a further eight years. This description is sufficiently clear and exact for my purpose.

Mr Skogen illustrates another variant. He was 96 years old and still active and independent when his wife died. After her death, his children, particularly his youngest daughter, Ragnhild, provided practical help in the household for a number of months. Then he insisted on

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moving to an assisted living facility because he did not want to be a burden to his children. Ragnhild visited him regularly at the home three or four times a week (contact); one of the sons also dropped in often, together with his wife. After four years in the home, the father had a heart attack and developed symptoms of anxiety, and four of his five children spent the night with him in turn over a period of three weeks ( personal care). When Mr Skogen was transferred to a nursing home, the children returned to the same activities and the same distribution of tasks as during their father’s first four years in the assisted living facility. Although the one brother and his wife contributed much to the caregiving, the youngest daughter stands out as the primary caregiver. However, unlike in the cases of Mrs Nygaard and Mrs Bakkane, several other people shared the responsibility. Mr Skogen’s wife is not regarded as a caregiver. The household tasks she was responsible for comprised part of the implied marriage contract and complied with the gender role pattern for the generation of old people that concerns us here. In fact, the situation is rather that the husband was caregiver for his wife for a short time before she died. The youngest daughter, Ragnhild, is regarded as the primary caregiver for Mr Skogen from the time her mother died.

Mr Tanum represents an extreme of independence. He was active, was married to an active wife, and felt feeble for only a week before suddenly dying on the sofa at home while resting. According to our criteria, in this case the wife was strictly only a primary contact. She provided neither practical help nor personal care in any form before her husband died. However, because the terminology has been simplified, and I use only one of the terms, she is called the primary caregiver rather than a mere contact.

In none of these cases is it difficult to say who was responsible for ‘the greater part of the informal contact, practical help and/or personal care received by the elderly person in old age’. In other cases, both the relatives and I found it difficult to decide which of two people did most: husband or daughter, son or daughter-in-law, sister or niece. In such cases I use the term primary caregiver pair – an issue that is discussed in Chapter 6. This chapter has provided a critical part of the story about our 434 elderly people, for the manner in which they were studied and the terminology

40

Research design

employed is essential information for the critical analysis of this research. The next chapter unveils the characteristics of the subject population. Who were these people, the elderly people of Larvik, who were living the last years of their long lives during the final decades of the twentieth century?

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4

The study population Its basic characteristics

This chapter presents the study population in greater detail, with a focus on the following questions: • • • • • • •

What was the gender distribution of the study population? What were the ages of these elderly people at death? What was the marital status of these people before and during the study period? How many siblings and how many children did these elderly people have? How many of these family members lived near the members of the study population during their old age? How was the study population employed – to what socio-economic groups did they belong – throughout most of their adult lives? How did members of the study population die?

Because gender is a fundamental dimension in most of the analyses in this study, all figures are presented for men and women separately. The old age of men and women differs substantially. The gender differences we observe in old age are the sum of biological and social differences deepened and accumulated over the life span (Arber and Ginn 1995; WHO 1999).

Gender and age The study population comprised 309 women (71 per cent) and 125 men (29 per cent). The proportion of women and men in the 80+ Norwegian population in 1981 was 64 per cent and 36 per cent respectively. But although the Larvik figures differed slightly from the average for the country, they were similar to the figures for the same age groups in other towns and cities at the time (Statistisk sentralbyrå 1982).

42

The study population

Age at death The average age at death was 89.1 years (79–102 years) for the total study population. Mean age of death was 89.5 years for women and 88.1 for men – a significant gender difference. The Norwegian life expectancy at age 80 was 8.1 years for women and 6.5 years for men for the period 1981–90 (Statistisk sentralbyrå 1995). As we were able to ascertain after the death of the last member of the study population, those who were 80 years old at the beginning of the study had a mortality rate higher than the national average: a life expectancy of 7.1 years for women and 5.2 years for men. Figure 4.1 shows the so-called Kaplan-Meier curves for age at death for the study population – one curve for women and one for men. Curves of this type are used in this book to present data on the duration of different states and transitions from one state to another. The curves display the probability that a transition is not happening during a specific passage of time – in this case the probability that a person does not die. Although the curve is used to represent the probability distribution of the duration of many different states – not merely being alive – the curve is often called a survival curve.

Gender

1.0

Man Woman

0.8

0.6

0.4

0.2

0.0

70

80

90

100

Age at death (years)

Figure 4.1 Age at death in the study population: Kaplan-Meier curves.

110

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The unit on the x-axis is time (measured here as age). On the y-axis probability is expressed as a figure between 0 (no probability) and 1 (full probability). Every notch or step on the curve represents one or more individuals who die at that specific time, and if one draws a vertical line down from this point, one can find age at death. A corresponding horizontal line leads to a point on the y-axis, which shows the probability of members of the study population surviving to this age. For instance, the probability of surviving to age 90 is 0.45 for women and 0.30 for men. The above figure indicates that the mortality of old men is higher than the mortality of old women: the gradient of the men’s curve is systematically steeper. At the periphery of the curve, however, this is not the case: Over the age of 90, mortality falls significantly, and flattens between women and men, resembling a phenomenon that demographers call crossover of mortality (Grundy 1997). In populations with different mortality rates, the death rate sometimes converges – even crosses – at extreme ages. Afro-Americans, for instance, have a higher mortality rate than their white counterparts up to age 85, at which point their mortality rates converge. The explanation is selection. Afro-Americans who reach extreme old age are people with an ability to survive that surpasses that of their white counterparts (Ferraro and Farmer 1996). When mortality of women and men in the study population converges at the end of their 90s, the same explanation may apply: only the men who reach 100 years of age are able to compete with the female ability for survival. If we examine the age distribution of members of the study population at the beginning of the study (Appendix A, Table A.3), we can see traces of the same phenomenon. Although the numbers are small and the observation may be accidental, it is worth noting that the three oldest members of the study population in 1981 were men between the ages of 97 and 100.

Family structure Marital status Table 4.1 shows how marital status was distributed in the study population at the start of the Larvik study. The table also shows the average for the corresponding birth cohorts in Norway. First, let us compare the figures from Larvik with those for the whole country. In spite of some deviations, the figures for Norway show the same pattern and generally the same values as for the study population. Among women in Larvik, a smaller proportion than in the general Norwegian population is married and a larger proportion is widowed. Among the men in Larvik, there is a larger proportion of widowers than there is in the country as a whole. The proportion of married men is equal to the national average, but the proportion of

44

The study population

Table 4.1 Marital status for the study population and for persons aged 80+ in Norway, 1981 (%) Marital Status

Women Larvik

Married Widowed Divorced Never married Total (N)

Men Norway

Larvik

All Norway

Larvik

Norway

7 70 4 19

13 64 3 20

46 46 2 6

48 38 2 12

18 63 4 16

26 55 2 17

100

100

100

100

101*

100

(309)

(80,594)

(125)

(44,838)

(434)

(125,432)

Source: for the national figures, Statistisk sentralbyrå (1982). Note: *Because of rounding, percentages do not always add up to 100.

never-married is lower. The reason for these differences is unclear. Several factors may have contributed to the fact that the marital status among men and women in the Larvik study has a varying deviance from the national average. The most important are probably mortality, differing marriage frequencies, and differing patterns of mobility. Next, let us concentrate on the study population. Aside from the small number of elderly divorced,1 gender differences were significant for all marital status categories. Although widows dominate the female elderly, men are as likely to be married as they are to be widowed. At the beginning of this study, in fact, men were almost seven times more likely to be married than were women. Again, we see the pattern of higher male mortality, more frequent male marriage, and higher female movement in and out of town as possible explanations for this effect. The fact that women tend to marry men older than themselves adds to this trend. There are many never-married individuals in these cohorts, a finding that would surprise few demographers. As discussed earlier, these people grew up in economically hard times – times that were characterized by lower fertility and less frequent marriages than are more prosperous times. Parental status The study population’s parental status is described by the number of children and where the children were living during their parents’ last years. The parental status of the study population is, of course, a reflection of their marital status throughout life. The members of the study population had an average of five siblings, which increased their chances of being supported by a sister or a brother in old age. Table 4.2 gives the figures for the probability of old Larvik people being supported by their own children, calculated as the distribution

The study population 45 1111 2 3 4 5111 6 7 8 9 1011 1 2 3111 4 5 6 7 8 9 20111 1 2 3 4 5111 6 7 8 9 30111 1 2 3 4 5 6 7 8 9 40111 1 2 3 44 45111

Table 4.2 The proportion of individuals with 0–4+ children in the study population (%) Number of children who reached adulthood 0 1 2 3 4+ Total (N)

Women 30 20 21 17 12 100 (299)

Men 22 24 18 13 22 99* (125)

Overall 28 21 20 16 15 100 (424)

Note: *Because of rounding, percentages do not always add up to 100.

of their children who reached adulthood (25 of the women and ten of the men lost a total of 38 children under the age of 16). Close to one-third of the individuals in the study population were childless, which is consistent with the low fertility rate in Norway between 1925 and 1940 (Brunborg and Mamalund 1994). Kari Skrede (1994: 27) estimates that approximately one-quarter to one-third of all women born in Norway around 1900 never had children. Estimates from other European countries and from the US and Australia for the same cohorts show comparable figures (Dykstra and Hagestad forthcoming). Among the oldest children, 25 per cent had been born by 1920, 50 per cent by 1924, and 75 per cent by 1928. Or, put another way, the majority of the children of this study population were born in the 1920s. Among the youngest children, 25 per cent were born before 1925, 50 per cent before 1929, and 75 per cent before 1934. Given that groups of siblings came at times of crisis in Larvik (see Chapter 2), it is not strange that there were few of them. Children living nearby How many of the children were still living in Larvik during their parents’ old age? Or, from the point of view of the study population: how many of the elderly had children living in the vicinity right up to the time of their death? In the vicinity, as defined in this study, means in Larvik or one of the four surrounding municipalities – within a maximum distance of a 30-minute drive by car. Table 4.3 shows the distribution. If one compares the female data from Table 4.2 with those of Table 4.3, one can see that the proportion of elderly women without children in the Larvik area is 14 percentage points higher than the proportion without children who reached adulthood. The corresponding difference for men is 15 percentage points. The group with only one child living locally is also

46

The study population

Table 4.3 The proportion of the study population with 0–4+ children in the Larvik area at time of death (%) Children 0 1 2 3 4+ Total (N)

Women

Men

All

44 33 16 6 2

37 30 15 10 9

42 32 15 7 4

100

101*

100

(297)

(124)

(421)

Note: *Because of rounding, percentages do not always add up to 100.

larger, and there are relatively fewer with two or more children. Children who have moved from the area and children who are dead contribute to these differences. Roughly speaking, the study population is divided into three large groups: one group with no children in Larvik or its environs (42 per cent), one group with only one child (32 per cent), and one with two or more children (26 per cent). Living with another person Table 4.4 shows how large a proportion of the study population lived with another person to the end of life (those who died at home or in hospital) or until they moved into a long-term care institution. Living with refers to people sharing the same accommodation in the same apartment or the same house. An elderly person who had a suite in the home of another person was also considered to be living with that person. All in all, almost half the study population lived with someone else towards the end of life. Once again, the gender differences are striking. A larger proportion of women than men lived alone. But the proportion that lived with their children or with others is also larger among the women, reflecting a higher proportion of the never-married among women and the fact that women have more and closer social contacts than men do (Thorsen 1990). In sum, nearly as many of the elderly lived with their children as with their spouses. Several circumstances contributed to this fact. The reader may remember that Larvik suffered an extreme housing shortage after 1945. One-third of the children later to become primary caregivers lived as newlyweds with their parents, and only one-third of these left the parental home before both parents died. No more than 13 per cent of children who lived in the same house as a father or mother began this living-together arrangement during the parent’s old age. In this population, living with a child in old age is as likely to reflect earlier life circumstances as it is to reflect incidents in old age.

The study population 47 1111 2 3 4 5111 6 7 8 9 1011 1 2 3111 4 5 6 7 8 9 20111 1 2 3 4 5111 6 7 8 9 30111 1 2 3 4 5 6 7 8 9 40111 1 2 3 44 45111

Table 4.4 Household status in the study population before death or before moving into a long-term care institution (%) Shared home with

Women

Men

All

Spouse Child Others*

9 20 10

42 13 8

18 18 9

(N)

39

63

45

(304)

(118)

(422)

62

37

55

101**

100

100

(118)

(422)

Total: living with another person No one (living alone) Grand total (N)

(304)

Notes *Primarily siblings, children-in-law or other family members. **Because of rounding, percentages do not always add up to 100.

Almost half of the study population lived with someone towards the end of their life. Census figures from 1980 indicate, however, that the proportion in Larvik was not especially high (Statistisk sentralbyrå 1985).

Occupations and socio-economic status I have concentrated on the occupations that the elderly people held throughout most of their adult lives – on the work that represents the main content of their occupational careers. Table 4.5 shows the principal occupations of the study population. In this presentation, I have listed women’s own occupations as well as their spouses’ occupations. In this way the differences in life situations that may be concealed behind the occupational title homemaker 2 are accented. One is also less misled by the part-time jobs of married women, which rarely reflect their real social or economic resources. The table shows that homemaker is the most common occupation in the study population, followed by industrial worker. Other common occupations are shop owner, shop assistant/salesperson, member of a profession (e.g. physician, dentist, lawyer, or teacher), office functionary in private businesses, craftsperson, and cleaning person. For women of this generation, marital status is a crucial determinant of occupation. Two-thirds of the married women worked primarily as homemakers, and one-third of that group held other jobs, usually in a shop or as a cleaning person. The most common occupation among the unmarried women was as domestic help. A significant proportion worked in shops, in offices, in housekeeping occupations, in industry, or in a

48

The study population

Table 4.5 Occupations in the whole sample and in some sub-groups (%) Occupation

Homemaker Industrial worker Shop owner Shop assistant/ salesperson Professional Craftsperson Office worker in private business Cleaning person Domestic help Railway functionary Kitchen worker/ housekeeper Postal/telegraph worker Seamstress Seaman Farmer/gardener Public servant Fisher/whaler Driver All other occupations Total (N)

Whole sample

Unmarried Married women women

Married women’s spouses

Men

37.9 11.8 6.5 6.1

0.0 8.4 6.7 13.3

66.1 1.2 5.3 5.3

0.0 31.5 9.5 3.5

0.0 33.9 9.0 4.1

5.1 5.1 5.1

8.4 1.7 13.4

2.4 2.0 2.8

7.7 4.3 2.9

8.8 8.0 5.6

4.2 2.8 2.6 2.4

1.7 18.3 0.0 8.4

6.9 0.4 0.4 2.0

0.0 0.0 6.1 0.4

0.0 0.0 7.3 0.0

2.3

5.0

1.2

2.6

3.2

1.9 1.6 1.4 0.6 0.2 0.2 2.2

10.0 0.0 0.0 1.7 0.0 0.0 3.0

0.8 0.0 0.8 0.0 0.0 0.0 2.4

0.0 13.2 1.3 2.4 3.9 3.0 7.7

0.0 5.6 3.2 2.4 0.8 0.8 7.3

100.0

100.0

100.0

100.0

100.0

(428)

(60)

(245)

(233)

(123)

profession (primarily teaching). Moreover, every tenth unmarried woman made her living as a self-employed seamstress, working in her own home or shop. Among men, the most common occupation was industrial worker. Approximately one-third of the men and one-third of the women’s spouses had been in such jobs for most of their working lives. The range of industrial occupations is considerable, although the lumber, mechanical engineering, and metal industries play a particularly prominent role. Although few men were employed as shop assistants or salespeople, almost one in ten ran his own shop. Many widows were married to seamen (not shown in Table 4.5 above), which highlights the high mortality rate in this occupation. Traces of the same phenomenon can be found in such other occupational groups as driver and fisher/whaler.

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Socio-economic status The occupations of the study population have been arranged in accordance with the code numbers of Nordic Occupational Classification and grouped according to the Standard for Division for Socio-economic Status (Statistisk sentralbyrå 1984). When we code and arrange occupations by this method we get the results shown in Table 4.6. In this table married women are classified by their husband’s socioeconomic status. The table shows that the men in the study population and the married women’s husbands have coinciding status: approximately three-fifths are in socio-economic group 3 (in manual jobs as unskilled and skilled workers or craftspeople), approximately one-fifth in socio-economic group 2 (subordinate functionaries, like shop assistants or postal and telegraph workers), and approximately one-fifth in socio-economic group 1 (senior functionaries like teachers or business executives). The pattern for unmarried women is different, however, with approximately two-thirds of them in group 2, one-fifth in group 3, and one-tenth in group 1. All in all, then, we are dealing with a population in which the majority have had significant aspects of their living conditions determined by their own or their spouses’ work in manual occupations that did not require education beyond basic school level: socio-economic group 3. Socio-economic groupings may be said to be a general measure of living conditions, including such factors as work environment, education, and earnings. It would seem reasonable to believe that there were stable differences for these factors over the life course between a worker, driver, or seaman on the one hand, and a teacher, physician, or lawyer on the other, and that these differences led to different living conditions or lifestyles. Unfortunately, there is probably a stronger selection process operating in group 3 than in group 1, given the fact that seamen, drivers, and manual workers are exposed to greater physical danger and less healthy environmental factors than are physicians, lawyers, and teachers. We must assume, therefore, that we are dealing with a stronger, healthier, and perhaps luckier sub-group in group 3 – that the weaker, less healthy, and less fortunate Table 4.6 Distribution of various sub-groups of the study population by socioeconomic status (%) Socio-economic group

Socio-economic group 1 Socio-economic group 2 Socio-economic group 3 Total (N)

Married women’s spouses

Unmarried women

Men

Overall

20 21 59

12 64 24

18 21 61

18 27 54

100

100

100

100

(231)

(60)

(122)

(413)

50

The study population

members of their cohort succumbed to their life style and occupational hazards earlier, and never made it into the elderly population that comprised this study.

Causes of death Table 4.7 presents the causes of death in the study population according to the death certificates. The diagnoses designating the primary cause of death are coded in accordance with the International Classification of Diseases, 9th edition (ICD-9; see WHO 1977–8), and the code numbers are indicated in the table. A terminal state, with breathing problems and rising temperature, is often seen in very old and frail individuals. These situations may lead to an inaccurate diagnosis of pneumonia and a corresponding report as the cause of death. Some such cases are probably included in what are undoubtedly the inflated figures for pneumonia in Table 4.7. The most striking finding presented in the table, however, is the larger proportion of women than men who die from chronic heart diseases and stroke, while a larger proportion of men is over-represented with sudden death, cause unknown (Mors subita). This ‘diagnosis’ (which is, in fact, merely a description of a death occurring suddenly) is used when an individual dies within seconds or minutes and the underlying cause remains unknown. In the age group 80+ the underlying cause of a sudden death – according to studies relying on post-mortem examination (autopsy) – is usually heart arrest, cerebral stroke, major blood clots in the lung arteries (pulmonary embolism), or a ruptured aorta (aortic aneurysm) (Gallerani et al. 1994). Sudden death is the second most frequent cause of death among men, and fourth for the study population as a whole. This is a striking finding Table 4.7 Primary cause of death (%) Diagnosis (ICD-9) Pneumonia (480–6) Chronic heart disease (402, 414, 415, 424, 425, 428, 429, 440) Stroke (436–7) Cancer (140–208, 230–4) Acute myocardial (heart) infarction (410) Sudden death, cause unknown (Mors subita) (798) All other causes of death Total (N)

Women

Men

Overall

26 21

27 10

26 16

17 9 8

11 11 10

15 10 9

8

20

12

11

11

12

100

100

100

(309)

(125)

(434)

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that appears not to have been reported before, neither in the literature relying on post-mortem examinations or in the literature relying on information from death certificates. Generally the distribution of causes of death in the Larvik study comes close to what is found in larger autopsy studies in corresponding age groups (see Hadley 1992: 186–197 for an overview), indicating that the reliability in the death certificate data in our study is high. It is evident why studies relying on autopsy data do not report a high proportion of sudden death. Pathologists find the underlying cause for the sudden death, and report it. It is more difficult to explain why the proportion of sudden death generally is low in public statistics. Only a small fraction of this information comes from autopsies. Thus the diagnosis on death certificates tends to express the clinical judgement of physicians. When handling a case in which, according to all relevant information, a person has died within seconds or minutes, the physician may choose to write sudden death, cause unknown on the death certificate. This is an official category in the classification system (ICD number 798). Other physicians may guess at the cause of death and write, say, coronary heart infarction or arrhythmia of the heart. Then this special way of dying will disappear among other diagnoses. I have carefully controlled all the information on the death certificates for our population and have corrected this type of guessing in six cases. The diagnosis sudden death in the Larvik material is given by 30 different physicians, at a maximum three times each. The large number of sudden death diagnoses, therefore, cannot be due to a special practice by a few doctors. The possibility that some of these deaths could represent suicide is also considered. Based on the total information available, I exclude this as well. In the mid-1980s there were 17 suicides per 100,000 men of 80+ and five per 100,000 women of 80+ in Norway (Ekeberg and Aargaard 1991). Applied to the study population of Larvik this should correspond to 0.04 suicides in 1981 and successively lower frequencies in each of the following years as the study population diminished. Thus, from a statistical point of view, it is very unlikely that more than one individual from his population could have committed suicide. I therefore consider the 50 cases of sudden death in this material as a reliable and valid expression for the phenomenon it describes. No such deaths are hidden under other diagnoses, and vice versa: all the cases reported and categorized in this way have happened suddenly. If one includes ‘coronary heart infarction’ as a cause of death – a cause which is usually associated with dying within hours or days – we can say that many old men die like their younger brothers: quickly and unexpectedly. Women die more frequently of chronic heart disease and stroke, diseases that take a longer time, and which often have a long chronic phase or repeated acute episodes.

52

The study population

Notes 1

2

There were few socially acceptable reasons for divorce. Alcoholism, mental illness, mistreatment, and unfaithfulness are the reasons given by close relatives of the divorced. To manage children alone could be difficult, and poverty was often the result. I encountered another story about broken marriages in the study population that is less than unusual. It is the story of the husband who travels to the US to find a new life for his family and himself. His wife and children – who were to follow him – hear nothing from him for many years, until they finally learn that he has started a new family. Some of these deceived women were listed as widows in the population register and in the journal systems of the health service, as were a number of divorced women. This situation speaks strongly about the stigma attached to divorce in the study population. It was more comfortable for these women to describe themselves as widowed than as divorced or separated. The Norwegian word used in the study was husmor, which can be literally translated as ‘house mother’. Because the English term ‘house mother’ refers to a woman who manages a dormitory, boarding school, or some other such institution for pay, the word ‘homemaker’ has been used here. Only married women in this study were defined by their relatives as husmor, however.

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5

Courses of disability

The study of disability, morbidity, and mortality in old age is one of the most active fields of research within gerontology today – a field involving fruitful cooperation among medical researchers, demographers, sociologists, and other social scientists. Their research questions address not only the general field of gerontology, but also the care of the elderly: • • • • • •

What types of disabilities affect old people? How long do these disabilities last? How do disabilities vary as a function of gender, social status, and other characteristics? What are the causes of disability in old age? Can we reduce or prevent the causes of disability in old age through better treatment and rehabilitation? What level of disability can the elderly of the future expect?

In this chapter I present some central viewpoints gleaned from this research literature. I then analyse questions that may contribute to deepening our knowledge in this area – questions on which the Larvik study is well suited to shed light. These questions are: • • • • •

How long does an 80+ population live with and without disability? How do men and women differ in this respect? What transitions and sequences of different disability states were most frequent in the Larvik population? What main types of disability careers were found, and how do gender, age, socio-economic status, and marital status correlate with these disability careers? Which diseases made the greatest contribution to the disabilities?

Background In 1980, the American rheumatologist, James Fries, coined the expression compression of morbidity (Fries 1980), directing the attention of scientists

54

Courses of disability

and health politicians to the period of old age in which complaints have a tendency to accumulate for a time before the person dies. Since then, a great deal of research has been concerned – directly or indirectly – with Fries’s concepts and way of thinking. Fries has presented a hypothesis about this period of life that must be one of the most fruitful mistakes in gerontology. On the basis of demographic data, he postulates: • • • •

that all species are born with an inherent, genetically determined lifespan that ends in natural death, if disease or injury does not intervene; that this lifespan averages 85 years for a human being; that several populations are on their way to reaching this limit; and that the time of the debut of the first irreversible chronic disease or infirmity is likely being delayed as a result of better prevention and treatment.

If, then, the upper limit for life expectancy is 85 years, it is also likely that, in some populations, a compression of morbidity in old age will become more common. If the chronic disease or infirmity debut is delayed, people live with chronic disease for a shorter time, and natural death sets an upper limit for the average duration of life. Put another way: compression of morbidity occurs in a population if the postponement of the first irreversible infirmities occurs faster than the increase in the duration of life. I do not intend to discuss Fries’s hypotheses in detail, but it is necessary to note that prominent demographers and biologists believe that, if such a phenomenon as natural death exists at all in the animal kingdom, Fries’s estimate of the age of natural death in human beings is far too low. Various new data have sown doubt among research biologists in recent years concerning the term ‘natural death’ (see Wachter and Finch 1997). And although there is scientific consensus that the prevalence of disabilities among the elderly at different ages has been reduced in many countries, there is still dispute as to whether there have been changes in the time span for disabilities before death in the total population of elderly people (an indirect measure of the duration of chronic disease or frailty that Fries is analysing). During the last twenty years, the concept of active life expectancy (ALE), which is used synonymously with the term healthy life expectancy (HLE), has become common in international research within gerontology, demography, and medicine. This concept denotes the time during the life course that an individual lives without disabilities. The traditional concept of life expectancy is thus divided into two parts: life expectancy with and life expectancy without disabilities. In this book, the term life expectancy without disability is used synonymously with active life expectancy and healthy life expectancy.

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Different studies show that life expectancy with disabilities has increased (REVES 1995), is stable (Mathers and Robine 1997), or has decreased (Olshansky and Wilkins 1998). Olshansky and Wilkins conclude that data from France and the USA support the compression of morbidity hypothesis for the last ten years, but add that we cannot know if this is a long-term tendency. Eileen Crimmins, the prominent American demographer, and her colleagues, argue that these tendencies point in several directions simultaneously, and will probably continue to do so (Crimmins et al. 1996). Although we now possess some fragments of reliable knowledge about parts of this period for different groups of elderly, few studies can give a more holistic picture of disease and disability from the time they first appear until the old person dies. For one thing, institutionalization is a ‘black box’ in the data sets of most studies: we never learn what happens to those who experience institutionalization because their follow-up ends as soon as they are admitted. Furthermore, most studies lack event oriented data, so we must rely on panel studies with long intervals between observations. Two studies (Bortz 1990; Guralnik et al. 1991) have specifically analysed disability prior to death. Bortz, who has the most long-lasting observations (three years) found that 36 per cent of the age group 80–89 and 14 per cent of the age group 90–99 live without serious disability (measured in terms of walking dysfunction, incontinence, and dementia) up to the time of their death. Bortz’s is a small, selected sample, however: 97 persons from his geriatric practice. One of the objectives of the Larvik study was to fill gaps in this knowledge by answering questions generated from the perspectives expounded so proficiently by Fries: to understand the ‘natural history’ of the disabilities experienced towards the end of old people’s lives. The Larvik study can accomplish this ideal because it differs in design and data from any previous study. •

•

The Larvik study has a population advantage over previous research, in that: – it includes an entire population, regardless of where each individual was living at the beginning of the study, in the course of the study, or at time of death; – all individuals were observed for the entire period of the study; and – no person was lost from the study. The Larvik study has a design advantage over previous research, in that it is able to describe, for each individual: – the content of each relevant event; – the entire period from the onset of the first long-term disability (if any occurred) until time of death; and

56

Courses of disability –

the duration of events measured in continuous time (event oriented), rather than at the fixed intervals of discrete time.

Thus the data set provides an answer to the challenge that American epidemiologist, Jack Guralnik, described a few years ago: Evaluating the proportion of overall disability in the older population that does occur in the last few years before death is a challenging and difficult task that probably requires a long-term, prospective, population-based study. Currently there are no published estimates in this area. (Guralnik 1991: 151)

Models and terminology The sociologist, Nagi (1965), was the first to propose a model and a terminology for analysing the processes leading to different kinds of disability among old people. An updated, albeit somewhat simplified version (Jette 1996) is shown in Figure 5.1. The model describes different possible states of an individual, and predicts that transitions between these states may end in disability. The main pathway of the process consists of four stages: •

Stage 1 is characterized by the occurrence of inherited or acquired disease or injury that leads to:

•

Stage 2 or impairment: impaired or destroyed function that could take the form of: – an anatomic function, such as a stroke, in which brain tissue is destroyed; – a physiological function, such as a permanent weakening of the production of insulin in the pancreas; or – an emotional function, such as a permanent experience of being persecuted without reason – as one can observe among people suffering from a paranoid psychosis.

•

Stage 3 may arise from an impairment and take the form of functional limitations: a restricted ability to perform such actions as: – lifting a leg – shaking hands (grasping) – talking – seeing – maintaining stable and mature relationships with other people

•

Stage 4, disability, refers to the social consequences of the disease, injury, or defect: it refers to ‘each and every restricted or destroyed ability to perform socially defined roles and tasks within a socio-cultural

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Extra-individual factors

The main pathway Pathology (acquired or congenital)

Impairments

Risk factors

Functional limitations

Disability

Intra-individual factors

Figure 5.1 The disablement process. Source: Jette (1996: 112).

and physical context’ (Jette 1996: 108). In our context, examples of such roles and tasks might include management of a household or caring for one’s own personal needs (e.g. dressing oneself, washing oneself, or eating). Disability, then, is created in the interaction between an individual’s functional limitations and the environment. According to this model, transitions between these stages can be modified, stopped, or reversed by: •

environmental factors (extra-individual factors) such as: – – – – –

•

•

treatment technical aids rehabilitation nursing the physical or social environment

risk factors, such as: – age – gender – inherited susceptibility to certain disease personal factors (intra-individual factors), such as: – personal abilities – personal resources

Although environmental factors and personal factors are grouped separately in the figure, it is important to underline their reciprocal influence.

58

Courses of disability

In reality, they do not stand on their own side of the disability process. Good treatment and rehabilitation increase motivation and improve the ability to cope. Moreover, optimistic and strongly motivated patients are sure to benefit more from the medical treatment and other measures than are patients who are listless and depressed. Finally, it is necessary to underline the changes that occur over time in the environmental and personal factors described in the model. As far as the health services and the social and physical environments are concerned, period effects, which refer to social changes that affect many cohorts in approximately the same way, is a term often used. For example, it was unthinkable in the Norwegian health service 30 years ago that a person 80 years of age would be given an artificial hip. The risk was considered to be too high and the results poor. Today, a more-or-less healthy 90-yearold who is in pain or has limited walking function is given a new hip as a matter of course. As regards personal factors, we must consider cohort effects. New generations of old people probably think, act, and feel differently towards disease, disability, and the health services than did the generations before them. Today, one seldom hears an 80-year-old say ‘You have to put up with disease and disorders when you get old.’ Moreover, old people today may have children with more energetic views of old people than the children of older generations.

Life expectancy without disability and life expectancy with disability Now I shall address the first two questions asked in this chapter: • •

How long does a population aged 80+ live with and without disability? How do men and women differ in this respect?

Life expectancy with and without disability is measured as the number of years before death spent with and without ADL limitations respectively (the definition of ADL limitations was given on p. 30 in Chapter 3). Life expectancy without disability The observations are presented in Figure 5.2 in the form of two survival curves – one for men and one for women. The x-axis in the figure is a time axis, which is identical with the individual’s age. The y-axis shows the probability of surviving in the ADL-0 state. The curves illustrate the percentage of men and women in the sample who, at each age, are still to be found in an ADL-0 state. Individuals who eventually die in ADL-0 (for example, many of the cases of sudden death; see Chapter 4) are also

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Gender

1.0

Men Women

0.8

0.6

0.4

0.2

0.0

60

70

80

90

100

110

Life expectancy without disability (years)

Figure 5.2 Life expectancy without disability.

represented in the curve. In their case the total life expectancy and life expectancy without disability are identical. The average uninterrupted life expectancy in ADL-0 is 86.3 for both women and men. Before the age of 82, the curves are flatter and differ slightly for women and men. Beyond 82, they become completely parallel and follow a steep downward path. Here the curves show how quickly the need for help in ADL functions develops during this period. The curves flatten again at about the age of 93; at this point the transitions to longterm ADL limitations lose intensity. The members of the study population who reached the age of 93 are part of an elite group that stay healthy longer. The most precise calculation I can give in this respect for life after 80 years of age is to look at those individuals who were approximately 80 years of age at the beginning of the study – the cohorts born in 1900 and 1901 (N = 135). Their life expectancy without disability was 83.8 years on average for men and women. The same cohorts had, at the age of 80, a probability of 73 per cent for women and 84 per cent for men of living without ADL limitations. At 85 years this probability had fallen to 37 per cent for women and 45 per cent for men. At 90, only 7 per cent of men

60

Courses of disability

and women were living without the forms of disability that are measured in this study. Life expectancy with disability Life expectancy with disability is measured as the sum of the duration of all episodes from ADL-1 to ADL-3b that each individual experienced before dying, regardless of number, the order in which they occurred, and whether they were interrupted by an intervening improvement to ADL-0. In this case, also, we present the observations in the form of survival curves for men and women (Figure 5.3). The x-axis shows the length of time the episodes lasted before the individual died. The y-axis shows the probability of surviving with ADL limitation. If the life expectancy with disability is zero, then no episodes have been recorded, implying that the individual died in ADL-0 (most cases of ‘sudden death’ happened without a preceding ADL limitation). Although these curves touch at either end, there are significant gender differences. For both men and women there are a substantial number of short episodes of ADL limitations, as well as some long episodes. The curve for men, however, has more of the shorter type and fewer of the

Gender Men Women

1.0 0.8 0.6 0.4 0.2 0.0

0

10

20

Total duration (years) of ADL limitation (ADL-1 to ADL-3b) before death

Figure 5.3 Life expectancy with disability (years).

30

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longer type. The average value for the whole population is 2.8 years of ADL limitation (3.3 years for women and 1.7 years for men). Thus the women in this population lived twice as long with their disability before their deaths as the men did. For women, 23 per cent of the ADL limitation time was spent before they reached the age of 80; for men the figure was 21 per cent. Life expectancy with disability after the age of 80 was 2.6 years for women. Men’s life expectancy with disabilities after 80 was 1.4 years. In this study population, 20 women (6 per cent) and 19 men (15 per cent) died without any loss of ADL function – not even ADL-3b. Four individuals (three men and one woman) can be said to have lived without any health problems and to have been totally independent in terms of ADL right up to the moment they died. Summing up Life expectancy without disability is identical for men and women in both the study population as a whole and in the cohort that was 80 years old at the beginning of the study. What distinguishes men from women is the total duration of the periods of disability: to expand on Fries’s terminology, a greater degree of ‘compression of extensive need of help’ is found among men. The reason, however, is not that the debut of ADL limitations occurs later among men, but that men die sooner from their disabilities. Unfortunately, then, the time that women in this study population gained over men in total life expectancy (1.4 years; see Chapter 4) was, on average, a time with serious disabilities.

ADL careers In the preceding section, the duration of ADL limitations was analysed as if this were a homogeneous state. The duration of all levels of disability was combined in one single measure: life expectancy with disability. Numerous states, with or without transitions among them, were included in the same measure. In this section, I analyse disabilities as sequences of different ADL states. If there is no disability, the state is designated ADL-0. The term ADL career is used to describe the total course of the ADL states an individual lives through from the first time a long-term ADL limitation occurs up to the time he or she dies. Instead of looking at group averages, I now turn to the study of courses on an individual level. Before these phenomena are analysed, I present the ADL careers of some people already known to the reader and complete the picture with one additional person.

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Courses of disability

Early debut of ADL limitation Six individuals experienced their first ADL limitation between the ages of 69 and 73. Mrs Bakkane was the youngest.

As a 60-year-old widow, Mrs Bakkane moved into the home of her daughter Kari, who, like her mother, had recently lost her husband. Nine years later, Mrs Bakkane – who had other children living in Larvik – gradually became cognitively impaired. When just over the age of 70, she fulfilled our criteria for serious dementia. Kari cared for her mother for a further five years before she applied for her to stay permanently at Larvik Nursing Home. The loss of ADL function developed gradually. After a period of 2.5 years in state ADL-1 (help to get dressed and to wash herself), Mrs Bakkane lived for another five years in state ADL-2. During this period she also needed help to walk and to get in and out of bed. Thereafter, she lived for eight years in a state of ADL-3. In this phase she also needed help to eat and to go to the lavatory. Thus, Mrs Bakkane spent the time in ADL-1 and ADL-2 at home and the time in ADL-3 in a nursing home. Mrs Bakkane was restless and aggressive when first admitted to the nursing home. She had a couple of minor strokes and recurring respiratory infections. After breaking her hip at the age of 78, she deteriorated further. She gradually lost contact with her surroundings and was unable to speak, but was less restless. From the age of 82 she could manage to sit up for only short periods. She also had recurring urinary infections, diarrhoea, eye catarrh, and vaginal discharges. Because she had thick folds of fat on her body, her skin became sore in several places. Four months before she died, the nurses discovered a lump in one of her breasts. The doctor decided not to investigate further. For many weeks afterwards, Mrs Bakkane had large amounts of mucus in her airways, for which she received drainage treatment. After a long period of respiratory infection, she died of pneumonia at nearly 86 years of age.

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Late debut of ADL limitation Eight individuals experienced their first ADL limitation between 96 and 100 years of age. Mr Skogen, a retired stone worker, had lived in the assisted living facility Alders Hvile since the age of 88. He had recently become a widower, and did not want to be a burden to his family. He had a good relationship with his relatives, who provided a great deal of practical help. At Alders Hvile he was well liked by everyone, was helpful, and did errands for others. As his family said, ‘He was always satisfied, and never made demands.’ He could, however, be a little anxious. One daughter visited him three or four times a week. The rest of the family also went to see him often, and a son took him for rides in his car. Because of a chronic urinary infection, he could not always control his urination, but this never became a serious problem for him or for others. From the time he was 90, he was treated for high blood pressure and his hearing deteriorated slightly. At the age of 97, he fainted during a trip to town, received help from a nurse who happened to be passing by, and was admitted to hospital for one day. When he approached the age of 100, his anxiety increased to the point where his children had to spend the night with him at times. Around his hundredth birthday he had difficulty breathing. He was moved to the nursing home and treated for cardiac insufficiency, but was still able to dress and wash himself; he took his meals daily in the dining room. By the age of 100.5, he was still self-reliant with respect to all ADL functions. After a sudden seizure, with low pulse rate and an ECG that showed total blockage, he was admitted to hospital. The doctor diagnosed cardiac infarction. It was only during the last six days of his life that Mr Skogen was bedridden.

Without ADL limitation, and completely without disease or need of help Mr Tanum was an unmarried, retired lumberjack who drove a car right up to the time the engine broke down when he was 86. The family opposed his buying a new car, and at that point he lost some of his pleasure in life and began to feel dizzy at times. During the last week of his life he felt rather tired. He died quietly and unnoticed on the sofa at home, at the age of 87, while his brother, sister-in-law, and niece were chatting.

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Courses of disability

The longest total durations of ADL limitation Six individuals (five women and one man – Mrs Bakkane (p. 62) was one of them) lived with ADL limitation for 15 years or more before dying. Four of these people spent most of the total time of ADL limitation in ADL-1. The longest duration of disability was 19 years and 11 months. Mrs Aske was the widow of a labourer; she had four daughters, and lived with her daughter Runhild and Runhild’s family. From the age of 66, Mrs Aske had received help from all her daughters to clean the house and to do her shopping. At the age of 70, she started to develop osteoarthritis, first in the knees and then in both hips. She had several orthopaedic operations, and was given two artificial hips at the age of 75. Her knees still troubled her, and from then on she needed help in walking (ADL-1). Runhild was the main helper, although she received some relief from her sisters. The children wanted Mrs Aske to have a home helper, but she objected to the proposal and the matter was dropped. She had several knee operations, with the hope of improving the line of action of the knee joints (this was before the days of artificial knees). At the age of 85 she received a total prosthesis in one knee, but still had difficulty walking. By this time, she also needed help to wash herself, but, by definition, was still in state ADL-1 (one or two ADL limitations). She finally agreed to home help and home nursing, in addition to help from her daughters. A few years later, her doctor started treatment for cardiac insufficiency. At the age of 89, she developed serious pneumonia and was admitted to hospital. She made a good recovery, but her hearing began to fail and she began to suffer attacks of chest pain. At the age of 91, Mrs Aske was admitted to hospital again for pneumonia; and the year after that for bile duct infection. She always recovered, and was discharged home, still in stage ADL-1. During her last stay in hospital, an application was submitted for a relief bed in a nursing home, but she did not want to go there. The proposal was dropped. She was admitted to hospital twice within a short period when she was nearly 94: once for a second bout of bile duct infection and once for cardiac insufficiency. After the second stay in hospital she required greater care on a permanent basis. She entered an ADL-2 state: she was now unable to walk without assistance, wash herself, get in and out of bed, or dress herself. The family would not allow her to return home. After almost 28 years of helping her every day, 19 years of nursing, and 12 hospital stays, they had applied for a place for her in a nursing home. After six months in the home in an

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ADL-2 state, her cardiac insufficiency worsened. Then came a new attack of pneumonia. She was now permanently dependent on a wheelchair and needed help to go to the lavatory, but could still feed herself (ADL-3). She remained in this state for six months before she died.

The descriptions in the foregoing sections demonstrate how ADL limitations have different trajectories. In addition they illustrate the different ways in which illness processes can be the cause of transitions between ADL states. Mrs Bakkane experienced each state from ADL-0 through ADL-1, 2, and 3a before she died. Although she had many other acute and chronic illnesses, it was her dementia that gradually made her more and more dependent and helpless. Her deterioration throughout this illness brought her from one ADL state to another. Mrs Aske displays interesting similarities and differences. Just like Mrs Bakkane, she gradually experienced each state from ADL-0 to ADL-3a, but the causes of transitions varied. ADL-1 was caused by her joint disease. The transition to ADL-2 and to ADL-3a came after three new illnesses: bile duct infection, pneumonia, and increasing cardiac insufficiency. It was the combination of these illnesses that contributed to the last two transitions. In the case of Mr Skogen, the matter is simple: his one and only state of ADL limitation before death was caused by his cardiac infarction. In the following two sections, we address the phenomena that have been exemplified by the vignettes, and thereby shed light on the next questions to be addressed in this chapter: • •

What transitions and sequences of different disability states were most frequent in the Larvik population? What main types of disability careers were found, and how do gender, age, socio-economic status, and marital status contribute to these disability careers?

Transitions, sequences, and careers I have first divided the ADL careers into two main groups: • •

those in which the individual only moves to a lower level of functioning (careers without improvement) and never returns to a higher level of functioning (Table 5.1); and those in which the individual returns to a better level of functioning (careers with improvement – Table 5.2).

ADL stages

ADL-0 → ADL-3b → Death ADL-0 → Death

ADL-0 → ADL-1 → ADL-3b → Death ADL-0 → ADL-1 → Death

ADL-0 → ADL-1 → ADL-0 → ADL-1 → ADL-0 → ADL-1 → ADL-0 → ADL-1 →

ADL-2 → ADL-3b → Death ADL-2 → Death ADL-2 → ADL-3a → Death ADL-3a → Death

ADL-0 → ADL-2 → ADL-3b → Death ADL-0 → ADL-2 → Death ADL-0 → ADL-2 → ADL-3a → Death

Total

12

ADL-0 → ADL-3a → Death

Directly to ADL-3 before death

9 10 11

Directly to ADL-2 before death

5 6 7 8

Via ADL-1, to ADL-2, then ADL-3, then death

3 4

Via ADL-1 to death

1 2

No long-term ADL limitations before death

No.

Table 5.1 ADL careers without improvement

296

11

26 1 16

51 3 48 17

46 6

51 20

(95.8)

(3.6)

(8.4) (0.3) (5.2)

(16.5) (1.0) (15.5) (5.5)

(14.9) (1.9)

(16.5) (6.5)

Women (N = 296) n (%)

122

2

9 3 2

14 1 12 3

16 5

36 19

(98.4)

(1.6)

(7.3) (2.4) (1.6)

(11.4) (0.8) (9.8) (2.4)

(13.0) (4.1)

(29.3) (15.5)

Men (N = 122) n (%)

418

13

35 4 18

65 4 60 20

62 11

87 39

(96.8)

(3.0)

(8.1) (0.9) (4.2)

(15.0) (0.9) (13.9) (4.6)

(14.4) (2.5)

(20.1) (9.0)

All (N = 418) n (%)

ADL stages

ADL-0 → ADL-0 → ADL-0 → ADL-0 →

ADL-1 → ADL-0 → ADL-1 → ADL-0 → ADL-1 → ADL-0 → ADL-1 → ADL-0 →

ADL-0 → ADL-0 → ADL-0 → ADL-0 → ADL-0 →

ADL-2 → ADL-0 → ADL-2 → ADL-1 → ADL-2 → ADL-1 → ADL-2 → ADL-1 → ADL-1 → ADL-2 →

Total

22 23 26 25

ADL-0 → ADL-0 → ADL-0 → ADL-0 →

ADL-1 → ADL-3b → ADL-1 → ADL-3b → ADL-1 → ADL-3b → ADL-2 → ADL-3b → Death Death Death Death

ADL-3b ADL-3b → Death Death ADL-3b → Death ADL-1 → ADL-2 → ADL-3b → Death

ADL-3b → Death Death ADL-3a → Death ADL-1 → ADL-2 → ADL-3b → Death

ADL-3a → ADL-0 → ADL-3a → ADL-2 → ADL-1 → ADL-3a → ADL-1 → ADL-3a →

Improvement from ADL-3a

17 18 19 20 21

Improvement from ADL- 2

13 14 15 16

Improvement from ADL-1

No.

Table 5.2 ADL careers with improvement

14 (2 men and 12 women)

1 woman 1 woman 1 woman 2 women

1 woman 1 woman 1 man 1 woman 1 woman

1 man 1 woman 1 woman 1 woman

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Courses of disability

Careers without improvement The careers are arranged so that those that do not include any long-term disability prior to death come first (Nos. 1 and 2). Then come the careers that start with ADL-1 (Nos. 3–8), those that start with ADL-2 (Nos. 9–11), and finally the careers that start with ADL-3a (No. 12). Again, we find obvious differences between women and men. Men are systematically over-represented in careers dominated by few ADL limitations or none at all, and women in careers dominated by a greater number of ADL limitations. This pattern indicates that the differences between men and women with regard to life expectancy apply not only to duration of disability, but also to level of disability. Careers with improvement Few individuals – 3.7 per cent of the study population – experienced improvement of functional ability. Mrs Steinsholt was one of the few examples of an elderly person who did experience improvement.

Mrs Steinsholt was a widow; she lived alone in her own house and received help with house cleaning and transportation from her daughter. In all other ways, Mrs Steinsholt was independent until she was almost 92, at which time she began to experience difficulties in walking (ADL-1). She had cataracts, cardiac insufficiency, and an old fracture of her pelvis, which was causing pain; and as time passed her legs began to ache because of narrowing of the local arteries. This problem increased; she got gangrene in her right foot and her leg had to be amputated beneath the knee joint. Mrs Steinsholt was in ADL-3 (in need of help in all ADL functions) for six months after the operation. After eight weeks in hospital she was discharged to a nursing home. She succeeded in her intense training, however, so when she approached 93 years of age, she only needed help with washing herself (ADL-1). After close to a year at the nursing home she moved to Bøkeskogen eldresenter (assisted living facility), where she lived for four-and-a-half years. Her ADL state was unaltered until she suffered coronary heart infarction and died at the hospital after a short stay.

Improvement took place at all relevant levels: ADL-1, ADL-2, and ADL3a. Women are somewhat over-represented in functional improvement, but the figures are small, and the difference is not significant. If we combine careers with and without improvements, from a large number of possible combinations of ADL episodes, only 25 were observed

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in this population, with the picture dominated by relatively few types. Six careers represent 81 per cent of the total experienced. The most usual course was to proceed from ADL-0 to death, either directly or via ADL-3b. Mr Skogen is a typical example of the first pattern. The next most frequent are two careers consisting of several stages (cf. Mrs Bakkane and Mrs Aske) or with only ADL-1 plus ADL-3b. Tables 5.1 and 5.2 show that it is uncommon to experience more than three different episodes of ADL limitation, or to experience several recurrences of the same episode. The maximum is six episodes, and the minimum one (ADL-0 → Death). The median is three. Discussion The fact that the combinations of courses of disability over time tend to distil into a few groups, and that the transition from ADL-0 to death is also common in advanced age, coincides with the results of Bortz’s (op. cit.) retrospective study from his geriatric practice, and from prospective panel studies (Zarit et al. 1995; Rudberg et al. 1996). Improvement of disability has been an important topic within this field of research ever since Branch and Ku (1989) published the first comprehensive study of transitions between disability states for old persons living at home. Their population sample consisted of persons 65 years of age and older. The publications in this field send out optimistic signals: many old people, also the seriously disabled, can experience an improvement in functional ability over time. The data from the Larvik study call for a realistic interpretation in this respect in connection with the oldest individuals. A closer study of the literature shows little difference between results from Larvik and those of other studies. It is the younger elderly, from 65 to 75 years, who still have a good probability of recovering. It should also be remembered that if ADL function is measured at one or several specific points – as it is in most studies – the chance of finding improvement over time is obviously much greater than if the values refer to disability that has lasted or is expected to last three months or more. My hypothesis is that, when disability is repeatedly measured at specific intervals in cross-sectional studies as it exists at the time, the changes observed are primarily natural fluctuations, reflecting the high degree of morbidity in old people. In my opinion, these results indicate, first of all, an overevaluation of the potentials for improvement of long-term infirmities.

A typology The observations in Tables 5.1 and 5.2 constitute, in all their simplicity, a confusing diversity. Is it possible to construct in one table a simple grouping which compresses the findings from the Larvik study with regard

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Courses of disability

to ADL careers? In the following typology of ADL careers before death, I attempt to do just that. Let us examine the case histories once more. Mrs Bakkane shows a typical ADL career for a person with serious dementia as the primary disease. Although a person with advanced dementia may eventually require the same type of care as a patient with a serious somatic disease, the care is often dominated at first by dementia alone. Mrs Bakkane did not need help in stage ADL-1 because of physical impairment, but because she did not understand how to dress or keep herself clean. She could not differentiate between the top and bottom or the back and front of her garment. And long before she entered stage ADL-1, her daughter had to watch over her all day. Dementia follows a special course as regards need for care. The condition is also quite common, which is why I initially based the typology on two main categories: a career with dementia and a career without dementia, regardless of ADL level. Let us return to two more ADL careers: those of Mrs Aske and Mr Skogen. It is reasonable to say that they belong to two different categories. Mrs Aske experienced a career during which she needed extensive help for a long period, but had no serious dementia. She found herself in ADL2, and later in ADL-3, for a total of one year. By contrast, Mr Skogen required such help for only one week. Although anxiety and heart failure made him dependent on assistance, this week was the only episode of ADL limitation throughout his career. We could continue in this vein. Having set aside all the individuals with serious dementia, the rest of the case cards (cf. Figure B.2 on p. 197) could be sorted into several piles. I began with the visual picture produced by this sorting, comparing both the colours and the lengths of time shown in the ADL diagrams, and asked myself: ‘What type of careers are most common?’ At the same time, I drew on my experience from care of the aged and asked: ‘What groupings would be meaningful in practice?’ The criteria for the typology After performing the sorting and questioning described in the previous paragraph, I was left with this simple grouping of the course of disability among individuals without serious dementia: 1

2

Individuals who at one time or another experienced ADL-2 and/or ADL-3a: These are persons who develop a need for extensive help. They are dependent on assistance from others for much of the day and night, because of serious somatic disease. These courses are called severely dependent. Individuals who at one time or another experienced only ADL-1, or ADL-1 and ADL-3b: These persons have a more moderate need of assistance. This course is called frail.

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3

Individuals who died in the ADL-0 stage, or after ADL-3b only: These elderly people are called fairly healthy.

There are several reasons for finally choosing this grouping: • • •

some of the patterns occur often in our population; the categories are easy to delimit; and the grouping has meaning when considering care in a practical context.

In practice, the category of severely dependent includes persons who are partly or wholly dependent on a wheelchair or partly or wholly bedridden. And, as mentioned above, experience has shown that persons with such disabilities require full-day nursing care in order to maintain the standards for quality and the traditions existing in Norway for care of the elderly. Similarly, as a rule, ADL-1 comprises persons with more moderate problems of mobility. Given today’s standards, most of them will require full-day practical help. Most people without ADL impairment will either be able to cope during the daytime with or without practical help. These three types of career without serious dementia are ranked from qualitatively more comprehensive disability to less comprehensive disability. Table 5.3 shows the distribution of the four categories of courses in our typology. This table presents an ambiguous message. On the one hand, close to one-third of the individuals in this population of extremely old people die without having required much assistance ( fairly healthy). On the other hand more than a half enter a stage where they are totally dependent on other people’s help and care around the clock for a long time before they die (serious dementia; severely dependent). Gender differences are – as expected – substantial. The most striking is that the proportion of men who end life as fairly healthy is twice as large Table 5.3 A four-part typology for dependency trajectories (%; mean duration, years) Women %

Serious dementia Severely dependent Frail Fairly healthy Total N

Men Mean duration (years)

%

All Mean duration (years)

%

Mean duration (years)

22 40

4.1 4.9

15 27

3.3 4.0

20 36

3.9 4.7

15 23

2.6

13 45

2.8

14 30

2.7

100

100

100

(309)

(125)

(434)

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Courses of disability

as the proportion of women. Correspondingly, the proportion of severely dependent is significantly higher among women than among men. In addition, one can see that the duration of the two careers with the most extensive need of assistance is about one year longer for women. It is reasonable to think that different total life expectancies among men and women in the study population may influence ADL careers before death. Other factors may exert an influence as well – socio-economic status being among them. In modern societies there is still a significant association between social status and health; to a certain extent this also applies to the elderly (Dahl and Birkelund 1997). It is therefore of both theoretical and practical interest to see if this association can be found during the ADL career in the last stage of life. To address this issue, we now turn to the next to last question posed for this chapter: •

How do gender, age, socio-economic status, and marital status contribute to these disability careers?

When the effect of socio-economic status is studied, one must correct for marital status. As we saw in Table 4.6, there is an over-representation of unmarried women in socio-economic group 2. In the same statistical model, I have therefore analysed any association between ADL careers at the end of life on the one hand, and gender, age, socio-economic status, and marital status on the other. The reader will find this analysis in Table A.5 in Appendix A. The conclusion of this analysis is that, in a population like the one studied here, there is no significant association between socio-economic status or marital status and the ADL career one experiences. Therefore, what is seen in Table 5.3 can be taken as an expression of what very old men and women may expect, independent of these two factors. The analysis shows, however, that both gender and age at death, independent of each other, affect the probability of the ADL career one experiences before death. The influence of age, however, is comparatively modest compared to the effect of gender. Serious dementia I will now look a bit closer at the two extremes in the typology, beginning with serious dementia. First, the occurrence of serious dementia in the Larvik study compared with other population studies is examined. A central question here is whether the total number of dementia patients in a population at any time (the prevalence rate) is constantly increasing, levels off, or decreases in the highest age classes. Correspondingly, one may ask the same question about the number of new cases within a certain time span (the incidence rate).

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Prevalence and incidence are two concepts requiring further explanation. If one counts the occurrence of dementia in a population on a certain day, one can be said to be measuring the prevalence of this phenomenon – the prevalence rate or number of cases per 100, 1,000, or 100,000 on the day of investigation. Prevalence is like measuring water in a vessel in which the water is running in and draining off simultaneously. It depends on how many new cases are added and how many people die – on the number of new cases and the duration of the state. But prevalence gives us only a still photograph of phenomena that are constantly changing and would better be represented by moving pictures. An overview of the number of persons who enter a state of dementia within a certain time span will give a more dynamic picture. The incidence rate is such a measure; it expresses change per time unit. Prevalence: comparative figures A multinational European study, Eurodem (Hofman et al. 1991), used the same criteria for dementia as was utilized in the Larvik study: the so-called DSM-III criteria. Eurodem was based on 12 prevalence studies from the 1980s in eight different countries. All these studies include patients with dementia who were living either in institutions or in their homes. Figure 5.4 shows a direct comparison of the figures from Eurodem and the Larvik study population. The mean for Eurodem’s age groups is shown in the columns; the range of observations is also displayed. Eurodem included a sample from Oslo, Norway that was 89 years and younger (Engedal and Haugen 1993). The specific prevalence rates from the two age groups 80–84 and 85–89 in the Oslo sample is marked on the right side of the corresponding Eurodem columns. Figure 5.4 shows that the Larvik data are systematically consistent with the lowest calculations in Eurodem. In other words, I have interpreted the criteria for dementia relatively strictly compared with the Eurodem study and the figures from Oslo. Both Eurodem and the Larvik study show that the results for men are slightly lower than those for women in all age groups. In addition, the Larvik data indicate an interesting phenomenon: as a person reaches the age of 100 years, the prevalence rate falls. In Eurodem, the prevalence rate flattens in the highest age group (95–99 years), a finding that agrees with my own data. However, the whole of the Eurodem study contains only six observations of individuals of this age, and no one older. In the Larvik study there were 55 individuals over 95 years of age, and 6 over 100. Few population studies document the prevalence of dementia at extreme ages. Ritchie and Kildea (1995) reviewed nine high quality studies from the years 1987 to 1994. They found that the prevalence rate levels off at around age 95. However, their reviewed studies have one common weakness: they

60%

50%

40% 34.7 32.2 30% Oslo 26.4 21.6 20%

Larvik

Oslo 18.3

13.0 10%

80

85

90

95

100 years

Figure 5.4 Dementia in the Larvik study, the Oslo study, and in Eurodem; agespecific prevalence rates. Key: Columns of bar graphs = means from the Eurodem study; vertical line = range (maximum and minimum values) from the Eurodem study; means from the Oslo study on the right side of the Eurodem bars; line graph in bold: means from the Larvik study.

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don’t present separate data for age groups year by year after 95; every individual over that age is placed into one large, single group. There are few studies of the incidence of dementia either. Gao and his colleagues’ study of 13 investigations from the 1990s (Gao et al. 1998) shows that there is less increase but no decrease in the incidence over 85 years of age. However, everyone aged 95 years and over is treated as a single group in this study. In the Larvik study, I found no new cases of serious dementia after 97 years. In other words, the incidence rate approaches zero in this age segment of the study population. Studies of individuals of 100 years of age or more show the prevalence of dementia to be low (Perls 1993, 1995). Together with the Larvik data, this finding leads to the hypothesis that there may be an association between the ability to survive to extreme ages and to resist dementia. The ADL career of serious dementia The Larvik data can shed light on important features of the ADL career of dementia among persons over 80 years of age who suffer from this disorder. If we base our calculations on today’s figures for the Norwegian population and on the average figures calculated by Eurodem, then people over the age of 80 account for about two-thirds of persons with dementia. The case of Mrs Bakkane has been described above. This is a classic example of the course of the disorder, probably of Alzheimer’s disease. The fate of Mrs Bakkane is extreme in terms of duration, but not in terms of form and content: step-wise, long-term ADL impairment, many other diseases, long-term care by relatives, followed by long-term care in an institution. Table A.6 (Appendix A) shows the ADL careers experienced by persons with dementia. The data show an accumulation of people with dementia in the step-wise, severe ADL courses. These persons are especially overrepresented in the ADL career that takes the most severe course through all three ADL states consecutively. Of the persons in the total material who experienced this career, 55 per cent had serious dementia. Such persons are similarly under-represented in the ADL careers without longterm ADL limitations before death. Fairly healthy The persons who follow the career fairly healthy are in complete contrast to those who end their lives as seriously demented, severely dependent, or, for that matter, frail. As seen in Table 5.3, a large proportion – 30 per cent – of the individuals in this population ended their lives in a fairly healthy state. The only state containing a larger percentage is severely dependent. The criterion for the course fairly healthy is no ADL limitation of type ADL-1, 2, or 3a. However, such persons may have experienced ADL-3b

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Courses of disability

(five or six ADL limitations that lasted for up to three months and were caused by a disease that led directly to death). The group fairly healthy is diverse (cf. the difference between Mr Skogen and Mr Tanum). Not all the fairly healthy were absolutely healthy. Many of them had one or more incidences of serious, acute illnesses, but had the ability to overcome them or to live with them without ADL limitations. One-third had impaired hearing; one-quarter had impaired vision; and one-fifth had mental problems consisting primarily of loss of memory, depression, anxiety, or confusion. One in twenty had some form of incontinence. Mr Skogen is a good example: he could not always control his urine; his hearing failed; he was admitted to hospital after an attack of dizziness; and his anxiety troubled him, as did, gradually, his breathing difficulties. Even so, he washed and dressed himself (in our language: he could cope with his basic personal needs and had experienced no ADL limitations) right up to the week before he died. Typically, in fact, he died of a cardiac infarction. Mr Tanum illustrates the other end of the range of fairly healthy. He died in his sleep without having had any health disorders during his old age. Thus, in spite of considerable variation within the group itself, it is clear that, as a whole, the career fairly healthy differs substantially from all others. This group contains elderly people who were relatively self-reliant in their basic personal care right up to the time of their death. They suffered no long-lasting, serious, chronic diseases that reduced their ability to function; the situation which Fries has forecast as becoming more and more common.

Diseases and ADL states Approaching the end of this chapter, the last question listed in the introduction will be discussed: •

Which diseases made the greatest contribution to the disabilities in this population?

The association between disease and ADL state has been mentioned several times in the preceding paragraphs. In the model in Figure 5.1, a possible causal relationship is postulated: disease can, via impairment or functional limitations, lead to disability. It is assumed that the factors causing disability include a medical cause. Other publications in this field apply the same assumptions. It is difficult, however, to obtain comprehensive data, implying that, as yet, the research has provided limited information on the correlation between disease and disability. Among studies comprising people living in institutions or at home, I know of only one in which medical researchers have

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examined illnesses and disabilities: a small local study among 113 persons between 74 and 95 years of age. Five diseases were judged to be the cause of 84 per cent of all the functional impairments: osteoarthritis, stroke, visual disorders, heart disease, and dementia (Ford et al. 1988). Diseases and ADL states in the Larvik study A method similar to that used in the Ford et al. study was employed in the Larvik study. I compiled all relevant medical data from the health services and information obtained during the interviews with the next-ofkin. All information was considered as a whole and information from the different sources was weighed in an attempt to answer the question: •

What was the main medical reason for the disability for most of its duration?

I chose to anchor this analysis in separate ADL states or ADL episodes, and not in individual courses or ADL careers. I dissolved the careers of disability into their single factors, and calculated the total time that individuals in the study population spent in the three ADL states – from ADL-1 to ADL-3a – separately by the type of illness causing the corresponding disability. There are 545 episodes of ADL states 1–3a among the 434 elderly people in the Larvik study, 433 experienced by women and 113 by men. The importance of the different medical conditions in relation to the disability is measured as the number of years the study population had been living in the different ADL states as a function of primary medical cause. The results are shown in Table 5.4. In order to obtain several observations in each cell, and because the results for these two ADL states are similar, ADL-2 and ADL-3a are combined. The column on the far right shows the duration of all ADL limitations in the study population according to the diseases regarded as the primary cause. Five medical conditions stand out. These, in order of occurrence, are: 1 2 3 4 5

osteoarthritis dementia hip fracture and other injuries combined ‘complex states’ stroke

These five conditions combined accounted for 75 per cent of the time the person needed help in looking after basic personal needs. Seven other diseases were of some importance, and together accounted for 15 per cent of the total duration of the ADL limitations. They are, in declining order:

77.0 41.8 8.5 156.4 6.9 18.2 0.3 8.0 17.9 40.7 16.8 67.8 14.4 22.9 67.3

564.9

Hip fracture Other injuries Amputation of lower limb Osteoarthritis Osteoporosis Chronic heart disease Pneumonia Asthma and bronchitis Visual impairment Stroke Parkinson’s disease Dementia Cancer ‘Complex states’* All other illnesses

Total

415.5

35.6 20.1 16.9 35.5 1.1 2.2 1.8 2.7 0.0 35.0 16.6 114.6 6.0 111.0 16.4

ADL2+3a

980.4

112.6 61.9 25.4 191.9 8.0 20.4 2.1 10.7 17.9 75.7 33.4 182.4 20.4 133.9 83.7

Total

145.0

4.7 0.4 0.0 18.7 0.0 5.3 0.4 0.0 22.4 20.7 2.6 27.9 5.6 1.9 34.4

ADL-1

Men (N = 123)

73.4

0.3 8.3 0.0 5.0 0.0 0.5 0.0 0.4 4.2 10.0 5.4 17.1 0.8 21.0 0.4

ADL2+3a

218.4

5.0 8.7 0.0 23.7 0.0 5.8 0.4 0.4 26.6 30.7 8.0 45.0 6.4 22.9 34.8

Total

709.9

81.7 42.2 8.5 175.1 6.9 23.5 0.7 8.0 40.3 61.4 19.4 95.7 20.0 24.8 101.7

ADL-1

All (N = 429)

492.7

35.9 28.4 16.9 40.5 1.1 2.7 1.8 3.1 4.2 45.0 22.0 131.7 6.8 135.8 16.8

ADL2+3a

1202.6

117.6 70.6 25.4 215.6 8.0 26.2 2.5 11.1 44.5 106.4 41.4 227.4 26.8 160.6 118.5

Total

Note: *Situations in which the old person had more than two serious, chronic diseases, none of which could reasonably be described as the cause of the disability; or situations in which three diseases interchanged as the primary cause throughout the ADL career, without any one clearly accounting for the longest duration of the disability.

ADL-1

Illness

Women (N = 306)

Table 5.4 Duration of ADL limitations in years by primary medical cause as measured in quarters

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1 2 3 4 5 6 7

impaired vision Parkinson’s disease chronic heart disease cancer gangrene asthma and bronchitis osteoporosis

These diseases, usually occurring as part of complex states, may also occur as the single cause of ADL limitations (especially dementia, after-effects of injuries/hip fractures, chronic heart disease, impaired vision, stroke, and cancer). Certain conditions which are not in themselves a cause of ADL limitation may sometimes be a cause in combination with several other diseases – primarily urinary infections and, not surprisingly, mental disorders (anxiety/depression). If one takes a closer look at the second and third columns on the right in Table 5.4, it becomes obvious that some of the diseases are clearly found in one or another ADL level distinguished in the table. Relatively speaking, osteoarthritis, hip fracture, impaired vision, chronic heart disease, and cancer account for the longest duration of disability in ADL-1. Complex states are the most frequent of all primary causes in ADL-2 + 3a. Some diseases make more or less the same contribution to the disability at both levels: dementia, injuries other than hip fracture, Parkinson’s disease, and osteoporosis. In other words the different levels of disability are, to a large degree, characterized by different diseases. Gender differences I have already shown that the ADL careers of men and women are clearly different. Further details can now be added to this picture. Disability caused by hip fracture lasts nine times longer in women than in men. Disability caused by stroke, dementia, complex states, injuries other than hip fracture, and diseases of the joint lasts two to four times longer in women. Only disability from visual impairment lasts longer in men. The more serious the disability, the greater the gender difference in occurrence and duration. All in all, women are 3.9 times longer in ADL1 than men are, and 5.7 times longer in ADL-2 or ADL-3a. Discussion These analyses provide better estimates than have been obtained from other studies because they are based on a medical evaluation of the extent to which each disease contributes to the disability. They also specify the importance of the different diseases as regards the different levels of dependence on help. Even more important, they present data on the duration of

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Courses of disability

ADL states caused by different diseases. Such data, to the best of my knowledge, do not exist elsewhere in the epidemiological literature. Equipped with these data, it is possible to provide relatively accurate descriptions of health policy options for the 80+ population. It is obvious that the fight against one specific disease – dementia – should receive priority. This disorder, along with osteoarthritis, is associated with the greatest loss of function overall, and is more or less equally distributed among all ADL levels. Dementia is also an important component of the category complex states. From a health policy perspective, it is also important to be fully aware that osteoarthritis, injuries (including hip fracture), and stroke are conditions that also make a marked contribution to disability. These three conditions have two features in common: • •

more effective methods of treatment have been developed over the last ten years; and probably more can be done to prevent them than is being done at present.

For this reason, a period effect probably applies to the estimates for these diseases presented in Table 5.4. It is likely that a smaller proportion of elderly people have become severely disabled as a result of osteoarthritis over the last ten years, compared with 15 to 20 years ago. Moreover, to the extent that new ways of treating stroke have been introduced in the form of national treatment strategies (see Bugge and Romøren 1996), the same applies to stroke patients. This is a good example of the ways in which environmental factors influence the disability process over time (Figure 5.1), create period effects, and thereby create cohort effects. For new generations of old people, stroke and osteoarthritis will be less serious afflictions. The advances in prosthesis surgery will have a gender-specific effect. To a large degree, the Larvik data reflect the situation before these advances made headway. In the Larvik population, old women lived three times longer after being stricken with osteoarthritis-induced ADL limitations than did men. But in time, this gender difference may disappear.

Conclusion Although the analyses in this chapter rely heavily on the ADL measure, old people’s need of help is more far-reaching and complex than is reflected by this relatively simplistic measure. Yet the strength of the ADL measure is that it illuminates the most comprehensive needs in a relevant way. It covers circumstances that are striking and practically important. We should remember, however, that life in old age has other aspects than those connected to basic, physical care. To function around the clock in advanced

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age demands biological, psychological, and social competence surpassing the limited abilities the ADL functions are covering. The most important lesson from this chapter is that the typical courses of disability in old age sooner or later adopt a severe character, and that this situation more often applies to old women than to old men. To the Larvik study population, the last part of the life course must often have appeared to be weighty. Nevertheless, there are many exceptions, albeit unevenly distributed by gender. If it is an aim that the last years of life in old age should be lived with a maximum bodily and mental function, one can say that men are saved by their high mortality – either by dying before they become too frail or by dying shortly thereafter. Throughout the last decades, researchers in gerontology have, for the most part, tried to fight negative pictures of old age. Swedish gerontologist, Gerdt Sundström (1995), notices that the effect of this activity on public opinion or among the elderly themselves is limited; perhaps, he speculates, because gerontologists confuse their prevalence figures with the risk that life in old age becomes difficult at some point. Or, as he says: ‘Ageing is riskier than it looks.’ The popular experience with the problematic side of old age stems from observations of total life courses – grandparents, parents, aunts, and uncles – and not from scientific prevalence studies. What old age conveys can first be fully known when seeing what it was. Colleen Johnson, who followed 150 persons aged 85 years and over through six years expresses some of the same observations as Sundström. She maintains that the majority of gerontological research denies, minimizes, or fails to notice many of the problems that sooner or later characterize old age: declining health, loss of family members, and loss of friends. This oversight probably exists, she suggests, because gerontology researchers often collect data among the younger old and not among the oldest old. According to Johnson, many gerontologists perceive problematic old age to be a myth, and have created their own counter-myth (Johnson and Barer 1997). She recommends that her colleagues reach beyond the usual idea that old age is either good or bad, and realize that the last stage of life often creates considerable challenges to which each single individual has formidable abilities to adapt. With Colleen Johnson’s perspective in mind, we now examine one of the greatest resources to which our elderly people turned to augment the strength of their own abilities: the caregiving of family and friends. These are the people who assisted the members of our study population through the last years of their long lives.

6

Courses of family care

During the past few decades, gerontologists have conducted extensive research on the care of elderly persons by family members (George 1990; Chappell 1991; MaloneBeach and Zarit 1991; Lawton 1996; Drebling 1999), and Norway has contributed its share in this area of gerontology and in social policy (see Wærness 1982; Nordhus et al. 1986; Daatland 1988; Lingsom 1997). The research has been concerned to a limited extent with caregiving as a process that evolves over time, and as a consequence there is little understanding about the ways in which the provision of care takes the form of courses, with their varying content, structure, and length (Montgomery 1996). The main exception is the work of Pearlin, who launched the term careers of caregivers (Pearlin 1992) and later published, with his colleagues, the book Profiles in Caregiving: The Unexpected Career (Aneshensel et al. 1995). Over a period of three years, Pearlin and colleagues made an analysis of the caregiving work of 555 primary caregivers to people with dementia, examining their ways of coping with the inevitable stress associated with this role. Other authors have analysed the stages of dementia using the caregivers’ emotional experiences and coping strategies as guidelines. Some highly informative but small and qualitatively oriented studies in this area have been summarized by Nolan et al. (1996, Chapter 5). As part of a study on caregiving offspring, for example, Deborah Merrill (1997, Chapter 8) analysed the caregiving careers of 17 caregivers with the use of Pearlin’s model and another model developed by Kahana et al. (1994). Merrill does not only analyse the care of persons with dementia; she also draws attention to the old people’s network, changes in the type of help provided by the caregivers, and events such as hospital admissions and transfers to nursing homes. In their study of 41 daughters who lived with and cared for their mothers, Lewis and Meredith (1988, Chapter 3) prepared caregiving biographies describing a caring sequence consisting of three stages: semi-care, parttime full care, and full care. These various studies show how caring work can dominate a person’s existence over a long period, often with consequences that last long after the death of the care recipient. The caregiving career is both continuous

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and dynamic. Changes in the care recipient’s state of health is the cause of many changes in the type and amount of care required, and moves both the caregiver and the care recipient through the most important transitions in the caregiving career. Family care and the Larvik study In this chapter, the objective is to study the course of informal care in all types of ADL careers – not merely the cases in which dementia is the principal medical cause. I have therefore developed a general model that can be used to analyse primary trends in the informal caregiving processes – trends that can be identified in a whole population of elderly persons. It covers the caregiving career from the emerging need for long-term care until the old person dies. Cases in which the need never emerges are included as well. In the following pages the terms family care and informal care are used synonymously, because most of the unpaid caregivers – unpaid care being the primary criterion for defining someone as an informal caregiver – recorded in the Larvik study, as elsewhere, are relatives. The development of my caregiving career model begins by establishing who was responsible for the informal care received by each member of the study population. In this connection I also ask: • •

Who did not receive informal care during the last years of their life? And why not? Are the caregivers stable over time? And if not, why not?

The next step is the presentation of the caregiving career model, focusing on the following questions: • • •

What type of care do the primary caregivers provide? What stages does the caregiving include, and what overall course does it take? What are the most common caregiving careers?

After presenting the caregiving career model, its terms, and its empirical foundation, I use it to address two important themes of study in family care to the elderly: 1 2

What form does the caregiving career take when the caregivers are sons, as opposed to daughters? How many of the primary caregivers said that the burden became too much for them at some point in their caregiving careers, and what factors help to explain the variations in their ability to cope with the care recipient over a long period?

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Courses of family care

Primary and secondary caregivers According to the definitions in Chapter 3, p. 34, the primary caregiver (sometimes abbreviated to NOP (in Norwegian, nærmeste omsorgsperson or ‘closest caregiver’) is the person who was responsible for the greater part of the informal care received by the elderly person (sometimes called EP). Other persons in the network of helpers are designated secondary caregivers. The distribution of primary caregivers by gender, age, and relationship to EP is shown in Table 6.1. There are two large and six smaller groups of primary caregivers. As might be expected, daughters dominate the scene, but sons also represent a substantial number of caregivers. These two categories constitute the two large groups. If spouses, offspring, grandchildren, and siblings are defined Table 6.1 The distribution of primary caregivers by relationship to the elderly person, gender, and age* NOP’s gender and relationship to EP: number and (%) Spouse Wife Husband

Frequency: number and (%)

Mean age of NOP at EP’s death

39 32 7

(9.3) (7.6) (1.7)

79.4 79.6 77.8

149 78 27 2 1 1

(35.5) (18.6) (6.4) (0.5) (0.2) (0.2)

60.0 60.2 60.0 43.0 50.0 36.0

Sister Brother

35 5

(8.3) (1.2)

78.3 81.3

Niece Nephew

29 17

(6.9) (4.0)

63.0 61.6

Other relatives Women Men

19 17 2

(4.5) (4.0) (0.5)

60.8 61.7 53.5

Non-relatives Women Men

16 14 2

(3.8) (3.3) (0.5)

57.7 57.3 61.0

4

(1.0)

–

420

(100.0)

Daughter Son Daughter-in-law Grandchildren Women Men

No primary caregiver All

63.4 (28–90)

When NOP is female

304

(73.1)

64.1

When NOP is male

112

(26.9)

61.6

Note: *The order from top to bottom of the table corresponds to the closeness of the family relationship between NOP and EP. NOP’s gender is specifically stated only where it is not apparent.

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as close relatives, as many as 81 per cent of the NOPs belong to this category. The category of other relatives includes a broad range of relationships. The most frequent are daughters-in-law (n = 6) and wives of nephews (n = 4). Together with nieces and nephews, other relatives or distant relatives account for 16 per cent of the caregivers. In total, close and distant relatives account for 96 per cent of the primary caregivers. As Table 6.1 shows, sons-in-law are not represented. There was one son-in-law who assumed the care of the elderly person after his wife, EP’s daughter, died, but because the daughter-in-law performed the greater part of the caregiving work, she is coded as the primary caregiver. The term non-relative covered several types of relationships in this study: four acquaintances, four persons from the health and social welfare services, and a neighbour. I have referred previously to the large proportion of childless people in this study population, and this phenomenon obviously influences the distribution of primary caregivers. If we distinguish between childless persons and the rest of the study population, the effect is obvious. Among those EPs who had adult offspring, 95 per cent of their primary caregivers were close relatives. (In a few cases, adult children died before their parents did, but their elderly parents were not considered to be childless for purposes of our classification). Among the childless, only 37 per cent had a close relative (i.e. a sister or a brother) as primary caregiver. The group of caregivers comprising siblings, nephews and nieces, other relatives, and non-relatives, shown in Table 6.1, refers almost entirely to the childless members of the study population. In 32 of the 46 cases in which the relatives refused an interview, I have been able to determine the relationship between EP and NOP on the basis of unequivocal information from health service records or from health personnel. The table is therefore based on 420 of the 434 persons in the study population. None of the remaining 14 NOPs lacked a primary caregiver, but there is insufficient information to determine which of several possible candidates best fits the criteria. Gender and age The two bottom rows of Table 6.1 show that almost three out of four primary caregivers were women. Moreover, most of these women were seniors themselves (average age 64 years) at the time of EP’s death; 37 per cent were over 65 years of age when EP died and 22 per cent were over 70. The gender of the caregiver didn’t vary significantly with the elderly person’s gender. There is a tendency, however, for distant relatives to provide care to women rather than to men. The explanation must be found in a combination of demographic and socio-psychological conditions:

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Courses of family care

(a) the study population contains a higher percentage of unmarried, childless women than unmarried, childless men, and (b) women usually have a broader informal support network than men do – a network that consists primarily of other women (Chappell 1992). Who does not receive care from relatives – and why? The data set from the Larvik study is suitable for analysing which old people do not receive care from friends and relatives, but must either depend on non-relatives or manage without primary contacts or primary caregivers. To the best of my knowledge, this question has never been studied before. Of the old persons whose primary caregiver was a non-relative, nine were childless, four had offspring living abroad, and one was in serious conflict with his children. In other words, among the members of this population, caregivers from outside the family appear as a possible consequence of real or functional childlessness combined with a lack of other relatives or lack of contact with other relatives, as illustrated in the case of Mrs Kaupang. Mrs Kaupang was a childless widow who was a retired cleaner. She had been adopted at the age of three and had no brothers or sisters. Her father left the family when she was quite small, and her mother had a serious mental illness. According to her neighbour, Yngvild, her primary caregiver, it worried Mrs Kaupang not to have any close relatives, yet for some reason she did not want contact with her dead husband’s family. Mrs Kaupang and Yngvild became neighbours when Yngvild was newly married. The childless old woman became attached to her neighbour’s older children, behaved like a grandmother to them, and took them everywhere. A neighbourly relationship continued in this vein for five years. Then Mrs Kaupang became a widow, and for the next 11 years she celebrated Christmas with her neighbour caregiver (a question in the interview guide which almost without exception identifies a primary caregiver). During the last year that Mrs Kaupang lived at home, she was extremely debilitated because of pneumonia. Yngvild visited her once a week over the next five years, and continued to do this after the elderly woman had moved to Alders Hvile. During the year before she died, she was visited by her primary caregiver at this assisted living facility several times a week.

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This example illustrates how the relationship between EP and NOP is founded on strong emotional ties. That childless people emotionally ‘adopt’ other people’s children, usually as nieces or nephews, is a common phenomenon in the study population. When asked how the decision about supporting Mrs Kaupang was made, Yngvild said, ‘There was nobody else.’ Four persons in the study population – all childless – are coded as being without a primary caregiver, and these four people had very different fates. Although it was impossible to identify anyone known to them who satisfied the criteria for primary caregiver in a way that fulfilled any intuitive meaning, they were all cared for, albeit in different ways. According to his relatives, the childless widower, Mr Kvelde, lived an independent life as an old man, and looked after himself. According to his closest relative (married to his nephew), he was a ‘cheerful bloke’. When he became elderly, he sold his house, applied for a place at Alders Hvile (assisted living facility) and lived there until he died, while he continued with his special hobby – cultivating garden flowers – to the joy of the whole institution.

Mrs Gui was married to a mentally handicapped man who later became a client of the social welfare services. They had no children. According to her closest relative, her late husband’s niece, she had suffered from mental problems all her life, and was a patient in a psychiatric hospital, later a psychiatric nursing home, from 1950 until she died in 1981. Her husband visited her occasionally, but these visits gradually stopped. However, a nephew assumed the responsibility of visiting her at the nursing home once a month.

Miss Lauve was a single woman who was also mentally handicapped. She and her older sister moved into Larvik Nursing Home when it opened in 1960. The sister died a few years later, but Miss Lauve remained in the nursing home. A volunteer patient visitor and one of the assistant nurses took special care of her.

88

Courses of family care Miss Gusland was unmarried and was employed at a health institution throughout her working life. She lived with her unmarried sister until the latter died, at which time Miss Gusland moved to a sheltered apartment and took her dinner at her previous place of work. The person closest to her, a distant relative of Miss Gusland’s late friend, said that she took both sisters on car trips on occasion. When Miss Gusland started to show symptoms of dementia, the institution’s physician eventually arranged for her to enter a nursing home. As our informant said: ‘She had been attached to that institution all her life; they took responsibility for her when she became old and helpless.’ This relative of her friend visited Miss Gusland once a month for the five years she lived in the nursing home before she died.

The line between having or not having a primary caregiver is obviously an indistinct one. According to my concept of primary caregivers, the line must be drawn just before the cases of Mr Kvelde, Mrs Gui, Miss Lauve, and Miss Gusland. They had helpers, but it is difficult to call them primary caregivers; nor do they appear to have been substitute primary caregivers. Formally speaking, it is possible to state who provided ‘the greater part of the informal care the old person received in old age’, but this is not enough to qualify the person as a primary caregiver. Important aspects of our concept of caregiving – closeness and continuity, for instance – are lacking. A distant relative who visits the person at the nursing home once a month or a volunteer patient visitor who does a bit of shopping from time to time obviously differs greatly from the other relationships we recorded for the larger study population. Within this non-primary-caregiver group, being without a primary caregiver is a continuation of a situation that existed throughout the person’s life. In two out of the four cases I have presented, EP lacked the ability to establish contact and interaction on equal terms. In none of these cases did the lack of a primary caregiver appear only when the person became old and required assistance, and (with the possible exception of Mrs Gui) it was not because the closest relative left the old person other than through death. For persons who do not receive family care, the boundary between formal and informal care is also difficult to define. As mentioned above, the caregiver category of non-relatives was composed of four persons from the health and social welfare services. And, in the case of Miss Gusland and Miss Lauve – neither of whom had a primary caregiver – it was health personnel who accepted the challenge and helped to solve the caregiving problems. So it can be concluded that the very few persons in this population who were without informal care belonged to the childless group, and that their

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Table 6.2 The distribution of elderly persons with 0–4+ secondary caregivers by the gender of the primary caregiver (%) Number of secondary caregivers

When NOP was a woman

When NOP was a man

Total

0 1 2 3 4+

28 29 21 17 6

12 30 33 16 9

24 29 24 17 7

(N)

(278)

(98)

(376)

Average number of secondary caregivers (N)

1.5 (278)

1.8 (98)

1.6 (376)

lack of family care in old age reflects fundamental features of their overall life course. Secondary caregivers Because my primary emphasis to this point has been on the person responsible for the greater part of the elderly person’s caregiving, the reader may be left with the impression that the primary caregivers assumed full responsibility for the elderly person. Recent research has shown, however, that many old people have others to draw upon for support, and that some of them have large social networks. As a rule, in fact, EP–NOP pairings typically have one or more secondary caregivers (Tennstedt et al. 1989; Gatz et al. 1990; Whitlatch and Noelker 1996; Lingsom 1997). Reliable data are available on this matter for 376 of the individuals in the study population. Table 6.2 shows how the secondary caregivers are distributed in the study population as a function of the primary caregiver’s gender. All in all, one-quarter of the primary caregivers had no secondary caregivers helping them. When the primary caregiver was a woman, she was twice as likely as her male caregiver counterpart to shoulder the responsibility alone. When the primary caregiver was a man, the average number of secondary caregivers was higher (non-significant difference) than when NOP was a woman. No correlation between the number of secondary caregivers and the gender of EP was found, meaning that male and female EPs have approximately the same total network of caregivers. The categories of caregivers who most often report being alone in their task are actually more distant relatives – 39 per cent of nieces and 44 per cent of non-relatives. The figures at the bottom of Table 6.2 show that, according to the primary caregiver, all the elderly people in this study population had an average

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Courses of family care

of two to three persons around them – NOP included – who provided various forms of informal help. In addition, it is possible that there was interaction with other family members, their network of friends and neighbours, plus contact with persons in the formal caregiving services (I shall return to them in the presentation of the caregiving career model). One is left with the impression, in fact, that the study population had a relatively rich social network. Primary caregiver pair In certain cases it was difficult, both for relatives and for the members of my research team, to decide which of two caregivers made the greatest contribution to the wellbeing of the elderly person; but after a total evaluation, one of the two was chosen as the main NOP. The assistants who coded the written information for the interviews decided the issue in each individual case on the basis of all the available material. In such cases the term primary caregiver pair was used as well. Let us briefly consider this constellation. The primary caregiver pair served as a pair in a number of different ways: • • •

in 83 cases (21 per cent of the total population), two caregivers contributed essentially the same amount of caregiving during the same period; in 19 cases (5 per cent), two caregivers assumed equal responsibility, but for consecutive periods; and in 8 cases (2 per cent) there was a mixture of these two situations, in which two caregivers, in part simultaneously and in part consecutively, contributed approximately the same amount of caregiving for approximately the same length of time.

Thus in 28 per cent of the study population – an appreciable proportion – the ‘primary caregiver’ was actually a pair. The next obvious question is: ‘Does the frequency of the pair constellation vary with the gender of the primary caregiver?’ The answer is clearly ‘Yes’: 51 per cent of male NOPs, but only 19 per cent of female NOPs were involved in an NOP pairing. These figures, together with the figures for secondary caregivers in Table 6.2, underlines the fact that a man who accepted the role of primary caregiver to a member of our study population could expect to receive greater support from other family members than could a woman who assumed the same task. It may be that some of these men were willing to assume caregiving responsibilities after they were assured of receiving support. In any case, the phenomenon of greater support for male caregivers has been found in many other studies (see, for example, Johansson 1999).

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Change of caregiver The Larvik study is well suited for discovering possible reasons for change among caregivers. This situation occurred during the course of caregiving in only 27 cases in our study population – in 7 per cent of the cases on which we have reliable information. The fact that a primary caregiver was so rarely replaced indicates the high degree of stability that the NOP role represents – a common finding in other studies (Jette et al. 1992; Miller and McFall 1991; Wenger 1992). Among the 27 old persons who experienced a change of caregiver, 25 experienced one change and two experienced two changes. The typical situation is that daughters (n = 9) or sons (n = 8) assume the caregiving or join a parent or other siblings in this task. However, more distant relatives may also embark on the caregiving course. What are the circumstances behind a change in caregiver in these 27 cases? There were four reasons recorded: • • • •

in 17 cases, the caregiver died; in 3 cases, the caregiver developed a serious illness; in 5 cases, another caregiver entered the scene to help the primary caregiver, particularly when the elderly person underwent lengthy institutional care; and in 2 cases, the caregiver or the caregiver’s helper could not manage to or did not want to continue the caregiving relationship.

This latter category of defecting caregivers is worthy of further comment. In both cases the elderly person was suffering from long-term dementia. One wife could not bear to continue her visits with a restless and aggressive husband, so their son assumed the task. In the other case, a mother with dementia was required to move from the home of one daughter to the home of another, because the first woman’s husband refused to keep his mother-in-law in the house any longer. Discussion Most of the patterns of informal care in Larvik, as observed up to this point, agree with well-known findings from other studies in Norway (see, e.g., Daatland 1988; Lingsom 1997), other European countries (Quereshi and Walker 1989), and North America (Chappell 1990; Dooghe 1992; Gatz et al. 1990; Whitlach and Noelker 1996). These patterns are: • •

informal caregiving is usually family-based, with friends and neighbours playing a peripheral role; a clear majority of the caregivers are women, but a marked share of men also assume the role of primary caregiver;

92 • • •

Courses of family care the primary caregiver is usually middle-aged or old; most old persons in need of help usually have one primary caregiver; and, as a rule, this situation remains stable over time; and most of the old persons have secondary caregivers who assist the person with main responsibility.

Why are these features so similar, even across countries and among widely differing studies? It is usual to base such investigations either on the part of the population that report that they are care providers or on statements from elderly people who have expressed a need for care. Yet, even in what appears to be the unique approach of the Larvik research – studying elderly people and later interviewing their relatives – the findings are substantially the same. In each of these studies, whether cross-sectional or longitudinal, the watchword is stability: the stability of caregiving over time, and the stability of the social system that supports it. In modern societies, the probability of becoming a caregiver follows a predictable hierarchical pattern (Cantor and Little 1985; Quereshi and Walker 1989). First in this hierarchy are spouses, provided they are alive and well; next come daughters, then daughters-in-law, and then sons (in Larvik the order of the last two groups was reversed; see Table 6.1). However the composition of the primary caregiver group is influenced by the age of the elderly people and the proportion that are childless. If the study includes elderly persons who are younger than the members of our study population, the primary caregivers would comprise a higher percentage of spouses. Gradually, as spouses die, the proportion of daughters, in particular, can be expected to increase, because the daughter is the second family member in this hierarchy.1 In cohorts with fewer childless members, the share of caregivers that are siblings, nieces or nephews, other relatives, or non-relatives would be smaller. In the Larvik study, only four persons – 1 per cent of the study population – were without a primary caregiver. And even they experienced other forms of informal contact and help, albeit not always substantial. Furthermore, only two of the primary caregivers withdrew from their role of caregiver. Seen as a whole, the impression gained from these findings is that of a population whose members, almost without exception, received informal care if needed, and almost always from family and relatives. We do not know, of course, if the old people themselves experienced this availability in the same way. But, whatever the situation may have been, the findings provide food for thought. In the eyes of the caregivers and the health and welfare services, virtually all members of our study population experienced some, and in many cases extensive informal care from others. Even considering that the data for this study were collected in a small town and that the situation may differ in other places in Norway, the

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findings show in a convincing manner that informal care is a strong institution even in a Scandinavian welfare state. In the public debate, it is often assumed that the availability of publicly financed formal care will reduce or substitute for informal care. This hypothesis has, however, been undermined in a detailed nationwide Norwegian study in recent years (Lingsom 1997).

Caregiving careers The primary caregiver participates in a process that stretches over time. The process may be simple or complex, and the duration may be short or long. What stages does the caregiving work include, and what course does it take? In the following section I present a model that can be used to analyse this question. The fundamental elements of the model are the caregiving activities: contact, practical help, and personal care, as defined in Chapter 3, pp. 34–7. Phases in the caregiving career During a detailed study of 30 randomly selected caregiving processes, it soon became clear that personal care, practical help, and contact could occur in three different phases or progressive stages in the development of the caregiving career: • • •

The main support phase The escalation phase The institution phase

The main support phase If the relatives describe a situation in which the caregiving activity – regardless of type – remains largely unchanged up to the final institutionalization (or up to time of death outside an institution), there is only a main support phase prior the institution phase. One example is Mr Skogen (p. 38), who received practical help from his daughter until he decided to move to an assisted living facility. Another example could be a person who received contact, practical help, or in-home personal care until an acute, serious illness led to hospitalization and death or to a longer stay in a nursing home before death. The escalation phase In cases in which the relatives describe an increase in informal care while the old person is still living at home, there is an escalation phase – a transition from one type of care to another more demanding caregiving

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Courses of family care

activity, or a substantial and permanent increase in the frequency of the care, without a change in content. Mrs Nygaard and Mrs Bakkane (p. 38) are both illustrative of this phase. Mrs Nygaard’s daughter was required to provide personal care rather than mere practical help after her mother had broken her hip. This meant that both the daughter and her mother embarked on a phase of escalation. In the case of Mrs Bakkane’s daughter, after one year of providing practical help she was required to begin providing personal care, as dementia overcame her mother (representing a similar transition). All three types of caregiving activities – contact, practical help, and personal care – may occur during the escalation phase, just as in the main support phase. In principle, there may be more than one transition to more demanding levels of care, but for the sake of simplicity, only the first is considered in this model. A de-escalation may occur as well, but the change in caregiving activities is not permanent in this case, and the criterion for escalation is not fulfilled. Thus there may be many transitory ups and downs in the main support phase before an eventual transition to the escalation phase or the institutional phase. The same applies within the escalation phase: fluctuations may occur until the care recipient is transferred permanently to an institution or dies at home. The institution phase After the escalation phase, both mother/daughter pairs described above entered an institution phase – in this case in a nursing home. In Mr Skogen’s case, this phase took place in an assisted living facility. The institution phase is defined as caregiving during the last stay in an institution – in any kind of institution – including a hospital. The primary caregiver can provide contact, practical help, and personal care in an institution. Because we did not specifically ask questions in the interviews with relatives that would differentiate between these three caregiving activities, I am forced to operate with only two global caregiving activities during the institutionalization phase, depending on where the old person was living: • •

care during the last stay in a long-term care institution (nursing home or assisted living facility); and care during the last hospital stay.

Figure 6.1a and b shows two draft outlines of the caregiving career. Figure 6.1a illustrates the three phases separately, with all the caregiving activities that NOP might perform from the time of the elderly person’s independence until his or her death: contact, practical help, personal care, caregiving during the last stay in an institution for the aged, and caregiving during the last stay in hospital.

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The different phases can succeed each other in different combinations or sequences. Figure 6.1b shows how, in principle, the phases can be combined in six different ways in six different sequences A–F: • • • • • •

Sequence A is a direct transition from independence to death. Sequence B contains only an institutionalization phase prior to death. Sequence C contains all the phases. Sequence D consists of a direct transition from main support phase to institutionalization. In Sequence E, the patient dies during the escalation phase. In Sequence F, the patient dies during the main support phase.

For most elderly persons, there is a period of independence prior to the main support phase. In the Larvik material it is possible, nearing the end of this period of independence, to catch a glimpse of an introductory phase entailing the acquisition of a caregiver. During this phase primary caregivers are appointed or appoint themselves. Because the processes surrounding nomination of the primary caregiver were not specifically addressed in the Larvik study, but were merely touched upon during interviews with the relatives, this hypothetical phase is not examined here. The model presented in Figures 6.1a and b can be used to analyse only the main trends and patterns in a complex process. All the incidental and transient caregiving situations, both in the home and upon institutionalization, are deleted from the final picture. Even so, although the model gives a simplified and stylized picture of the process, it does reflect the main course of the caregiving process, and allows us to distinguish between groups in the study population with entirely different caregiving careers. In the following sections, the three phases and the associated caregiving activities are described in greater detail, in line with the structure presented in Figure 6.1a. In this section, the distribution of NOP’s activities is examined: how often they occurred (e.g. daily, weekly), how long they lasted, and how they were combined with help from formal services. Characteristics of the main support phase The main support phase is, by definition, the first phase in the caregiving process – in some cases the only phase. Usually, however, it is followed by one or two other phases. The neutral term ‘support’ is chosen so as to cover all three types of caregiving activities, which differ greatly in themselves: contact, practical help, and personal care. It is a matter for discussion whether these activities should be made equivalent in this way. An alternative would be to operate with a ‘contact phase’ between independence and definite need of help or to look upon contact as a gliding transition to other caregiving activities.

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Courses of family care

(a)

Independent

Main support phase

Escalation phase

Contact

Contact

Practical help

Practical help

Personal care

Personal care

Institution phase

Long-term care institution

Death

Hospital

(b)

F E D

Independent

Main support phase

Escalation phase

C

Institution phase

Death

B A

Figure 6.1 (a) Activities and phases in the caregiving career; (b) sequences in the caregiving career.

The main reason for attaching equal weight to contact, practical help, and personal care is that the primary caregivers themselves regarded contact as a form of help – as caregiving work. They describe a behaviour with specific features, which can be identified and delimited in relation to other forms of interaction. This behaviour can be compared with what Lewis and Meredith (1988) call semi-care, which consists more of a feeling of responsibility than of demanding instrumental tasks. Contact is the most difficult caregiving activity to delimit in time – not to suggest that it should not be used as a criterion for caregiving work. It is important to recognize, however, that, even if the caregiver regards

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contact as a type of help, the old people themselves do not necessarily see it that way. It may well be that the caregiver created a form of dependence, which the old person by no means acknowledged. The caregiving process involves at least two persons. The analyses in this study are based on the perception of reality and reports from only one member of this relationship – one of the elderly person’s closest relatives – or on information from the health and social welfare services. NOP could have accorded EP a dependent role, in fact, in all the caregiving relationships analysed here, and it is important to keep these reservations in mind as the discussion proceeds. All the primary caregivers for whom we have reliable information report having undergone a phase of main support with EP. This situation applies to a total of 381 persons on whom the analyses are based. In 53 cases (12 per cent) the information was insufficient to characterize any aspects of the caregiving process outside an institution. In about a quarter of the cases, it is difficult, perhaps even contrived, to decide the time of transition to the main support phase. The caregivers describe this process as a gradual one. In most cases, however, NOP spontaneously mentioned an event that triggered the commencement of practical help, usually in connection with impairment in the old person’s health. In some cases the transition was clear, but it was impossible to establish with adequate certainty when it occurred. Information on duration is lacking in a total of 36 of the cases in which there definitely was a main support phase. The lack of information on duration is especially high for contact and low for personal care. The same pattern applies to information on the frequency of the performance of caregiving work. Table 6.3 presents data on reported distribution, frequency, and duration of the primary caregiving activities in the main support phase. Only the characteristics of the main activity during this phase are reported (cf. Figure 3.3 on p. 35). Thus the duration and frequency of practical help and of contact are excluded when personal care was NOP’s primary caregiving activity, and the duration and frequency of contact is excluded when the figures refer to practical help. The same principle is applied in the analysis of the other phases. The table shows that in one out of three cases the primary activity in the main support phase was practical help; the next most frequent activity was contact. Very few NOPs began their caregiving career with personal care. The table shows that caregiving work is frequent and of long duration in the main support phase. In the large majority of cases, NOP performed the activity – and this applies to all three kinds of caregiving activity in the main support phase – every day or several times a week for many years. EP was often hospitalized during the main support phase for an illness that did not lead to a permanent change in the need for help, either because the illness did not cause functional impairment or because effective treatment and rehabilitation were available. Typical examples are eye operations

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Courses of family care

Table 6.3 Distribution, frequency, and duration of the primary caregiving activities during the main support phase (%) Contact Percentage of NOPs who performed this primary activity (N) How often NOP performed this activity Every day Several times a week Once a week Less often (N) Duration of the primary activity Mean Range (N)

Practical help

Personal care

23

67

10

(89)

(254)

(38)

43 20 13 23

52 34 9 6

97 3 0 0

(30)

(213)

(37)

6.4 years 1.5–11 years (8)

5.4 years 0.1–33 years (190)

3.7 years 0.1–28 years (33)

(e.g. Mrs Nygaard), prostate operations, gall stones, prosthesis surgery (hips and knees), or uncomplicated fractures of the hip. During as much as 42 per cent of the caregiving in the main support phase, EP was hospitalized once or more, usually when NOP was providing personal care, and least often when the caregiving took the form of contact. Many of the old persons had also been hospitalized at least once during the years before the main support phase. Often the cause of the transition to this phase of caregiving was serious illness or injury, as in the case of Mrs Nygaard’s back injury. Hospitalization during the main support phase usually implies major but temporary changes in the primary caregiver’s activities. Even when the episodes are of short duration, they can be demanding – before, during, and after hospitalization. Hospital episodes are a good example of a situation in which the caregiving activities are not as static as the model seems to indicate. During such episodes many short-term (and therefore not counted) escalation phases and de-escalation phases may have occurred. The large majority of the old persons also received some kind of formal help during the main support phase, in addition to support from the primary and secondary caregivers: 67 per cent had home help, 48 per cent had one or more episodes with home nursing services, and 22 per cent had a temporary stay for rehabilitation or respite purposes at the nursing home.

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The formal services are analysed in more detail in the next chapter. For the time being it can be established that, in this study population, formal services were frequently involved during the main support phase, usually as a supplement to the help provided by the primary caregiver. Thus the reported activity of the primary caregiver cannot immediately be interpreted as an indicator of the old person’s need for help. In certain cases – when the primary caregiver lived far away or when EP had almost no family in Larvik, for example – formal services were the main source of help. This situation is demonstrated by the fact that the proportion of elderly people who received assistance from home help or home nursing services was no lower when the main activity of the primary caregiver was contact than when it was practical help or personal care. The caregiving activities expressed in the model describing the caregiving career are those performed by the primary caregiver, and do not indicate what type of help the old person received overall or what type of help he or she may have needed. Characteristics of the escalation phase Data obtained from interviews and/or records show that a total of 137 primary caregivers experienced an escalation phase during their caregiving career. In 60 additional cases where the situation was less certain, the data are not included in the following figures. In the case of all the old people with a primary caregiver for whom we have reliable information (N = 370), 37 per cent of NOPs experienced an escalation phase. What NOP did during this phase is known in all cases, and the duration of the help is known in 101 cases (74 per cent of the cases in which the caregiving career definitely included an escalation phase). The transition to the escalation phase almost always occurred because of a change in the old person’s health. A previous illness of EP’s may have become more serious (cf. Mrs Bakkane), or EP may have developed a new illness – sometimes on top of one or more other chronic diseases (cf. Mrs Nygaard). Except in cases where the deterioration was gradual, it was easy to establish exactly when the escalation phase began. In practice, the escalation phase is found to involve only two caregiving activities: personal care and practical help. None of the caregivers report more frequent contact on a permanent basis and, by definition, none of them shift from providing practical help or personal care to merely providing contact during the escalation phase. Table 6.4 shows the primary activities of the caregivers during the escalation phase. During the escalation phase, the dominating caregiving activity is personal care. This care is usually of short duration, but the range is wide: from one day to seven years (shown in Table 6.4 as 0.1 to 364 weeks). The activity is performed often – almost always every day, and in many cases, naturally enough, several times a day (in 72 per cent of the cases of personal care and 26 per cent of the cases of practical help).

100 Courses of family care Table 6.4 Distribution, frequency, and duration of the primary caregiving activities during the escalation phase (%) Practical help Proportion of NOPs that describe an escalation phase (N) How often NOP performed the primary activity Every day Several times a week Once a week Less often (N) Duration of the primary activity Mean Range (N)

Personal care

26

74

(36)

(101)

84 10 3 3

95 4 1 0

(31)

(95)

22 weeks 0.1–97 weeks (35)

17 weeks 0.1–364 weeks (96)

It was also usual for the old people to receive formal (in Larvik, as in all of Norway, publicly funded) help during the escalation phase, but this help seemed to have a different profile than that of the main support phase. In every case in which the primary caregiving activity was practical help, more use was made of home help and home nursing services during the escalation phase than during the phase of main support. When the primary caregiving activity was personal care, however, the use of the home-based services was about the same in these two phases. In this case, however, the proportion that was temporarily admitted to hospital was lower in the escalation phase than in the main support phase. This situation also existed when the dominating caregiving activity was practical help. What is the explanation? One hypothesis is that this phenomenon is related to the character of the caregiving. When a need for personal care arises that causes escalation of caregiving, the situation for the old person is often serious and acute. There are few options. Either the primary caregiver manages to ‘ride out the storm’ or the escalation phase is very short, resulting in permanent institutionalization or death. When the greater part of the activity in the escalation phase consists of practical help, EP’s situation is usually not quite as critical. The classic situation is represented by the worsening of a chronic illness. In this case it is usually enough to provide relief for the caregiver by admitting EP to an institution for a short stay. The duration of this caregiving situation,

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with practical help, is usually longer than when the dominant activity is personal care (see Table 6.4). This situation obviously assists both NOP and EP in extending this phase; because the caregiver is relieved from time to time, she or he manages to remain in this phase of caregiving for a longer period. Factors associated with the total duration of informal care What factors contribute to variations in the duration of the caregiving work? As far as I know, no study exists in the gerontological literature on informal care which focuses on the duration of this care. To shed light on this matter, I have developed the variable total duration of informal care: the sum of the duration of the main support and escalation phases. Thus, I ignore the content and frequency of the caregiving work and analyse only the duration of all the caregiving activities during the entire time the old person lived at home. A simple multivariate analysis was conducted using a Cox regression model, with emphasis on the effect of the following variables: • • • • •

EP’s gender EP’s age EP’s socio-economic status whether EP lived alone or with NOP relationship of NOP to EP (spouse, son, daughter, or other)

The results are presented in Table A.7 in Appendix A. Of greatest importance is whether the primary caregiver is a daughter; second comes a (weak) effect of EP’s age at time of death. The other explanatory variables (EP’s gender, socio-economic status, or living status) have no significant effect on the duration of total in-home care. When NOP is a daughter, in-home care lasts twice as long as when NOP belongs to the group other (i.e. EP’s brother, sister, grandchild, daughter-in-law, niece, nephew, other relative, or non-relative). The caregiving of daughters is analysed in more detail in the section comparing the primary caregiving careers of sons and daughters. For the time being, we merely note this gender difference as well as the fact that a spouse’s caregiving is not the longest-lasting care, when these other factors are controlled. Characteristics of the institution phase The vast majority of our study population (91 per cent) died in an institution. A total of 63 per cent died in a nursing home, 4 per cent in an assisted living facility, and 24 per cent after admission to a hospital. There are exceptions, however:

102 Courses of family care • • •

30 (7 per cent) died at home (20 of whom died suddenly and unexpectedly); 3 (1 per cent) died in town; and 7 (2 per cent) died in the hospital’s reception department before being actually admitted.

Seen from the caregiver’s point of view, the institution phase is also a caregiving situation, with no obvious break from an earlier role. This situation is also underlined in the study by Pearlin et al. (1996), and has been described by several other authors (e.g. Moss et al. 1993; Tobin 1985; Lingsom 1997). In many cases, as we have seen, EP had been admitted to an institution during earlier phases of NOP’s caregiving career – sometimes even before caregiving actually began. In our analysis, the institution phase constitutes the last stay in an institution prior to death. The distribution differs for the two types of institutions and represents different situations (see Table 6.5). In those cases in which the institution phase is associated with a hospital, the old person either had an acute, lifethreatening disease or was admitted towards the end of a long period of serious illness like cancer, after first being cared for at home. The phase lasted only for a couple of weeks, or, at most, just over two months. Time spent in the institution phase differed as a function of the institution: • • • •

3.7 years in a nursing home (mostly Larvik Nursing Home); 6.4 years at Alders Hvile; 5.2 years in Bøkeskogen eldresenter; and 6.4 years for those who alternated between several institutions for a continuous period prior to death.

The group of old people who lived in an institution for the aged during the institution phase is much more heterogeneous than the group who spent their institution phase in hospital: • • • •

some of the elderly people were reaching the end of a complex course of acute disease (cf. Mrs Nygaard); some were in the last years of a state of dementia (cf. Mrs Bakkane); some moved into an institution because they wanted to live in a communal household and not be a burden on their children (cf. Mr Skogen); and some had survived an acute illness in hospital (e.g. a major stroke), but needed personal care for many years afterwards due to serious functional disability.

Table 6.5 shows the pattern of the caregiver’s visits: in hospital situations NOP usually visits EP daily; in the case of long-term institutions the

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Table 6.5 Distribution by type of institution, frequency of visiting, and duration of the institution phase (%; number of years) Long-term care institutions* Distribution by type of institution (N) Duration Mean Median Range (N) How often NOP visited EP (%) Every day Several times a week Once a week Less often (N)

Hospital

82

18

(324)

(70)

4.3 years 2.9 years 0–32 years 4.7 years

16 days 10 days 1–70 days 17 days

(324)

(70)

37 39 15 9

78 17 6 0

(219)

(18)

Note: *Nursing homes or assisted living facilities (see Chapter 2).

visits take place several times a week. There is little information on the primary caregiver’s activity during the last stay in hospital, because this issue was not considered to be of central importance during our interviews with the relatives. Therefore the rest of the description of the institution phase refers exclusively to the stay in a long-term care institution for the elderly. As mentioned above, the data are insufficient to quantify NOP’s various caregiving activities of contact, practical help, and personal care, but the contact function seems to dominate in most cases. There are often practical tasks to be carried out for EP: the room must be furnished and kept in order, plants must be watered and cared for, and, when the old person dies, everything must be removed from the institution. In the meantime, the old person may need help with shopping, keeping finances in order, buying and laundering clothes, and many other maintenance tasks. Although the large majority of caregivers were satisfied with the efforts of the institution staff, not everyone was equally satisfied with everything and sometimes – as in the case of laundry – preferred to do the job themselves. The primary caregiver sometimes provided personal care in the institution. Feeding the old person is a classical example. Or, in the case of Mr Skogen, his daughters took turns spending the night with him during his period of anxiety. The caregiver’s activity when the old person is in a

104 Courses of family care long-term care institution can be referred to as supplementary care. The most common activities are taking the old person out of the institution for a visit or a drive (41 per cent) and providing practical help (21 per cent) and personal care (21 per cent). Some of the caregivers said that they felt partly responsible for their elderly person’s institutionalization, and described their feelings of guilt during this phase. Some reported feeling unhappy when the institution became the old person’s permanent home (15 per cent), and others said that their relationship with EP became more difficult. Thus, a situation in which the old person moves to a nursing home or an assisted living facility does not automatically relieve the burden on the primary caregiver (see also Lingsom 1997). Conclusion: caregiving careers in Larvik The picture of the process of informal caregiving, as obtained from our material, is that the core of the caregiving career consists of a long main support phase, with practical help being the most widespread activity. Although the primary caregivers also provide personal care, it is usually for only a short period during the escalation phase. In this population, personal care is primarily the task of the health and social welfare services during the last, the institution, phase of the caregiving process. The primary pattern in this context is a division of work between the informal and formal care. While the elderly person is still living at home, the families, together with the formal services, provide practical help and some personal care. At the institutions, formal services are responsible for most of the personal care, but families still make a substantial contribution to caregiving, mainly in the form of contact and practical help. Just as the ADL states studied in the previous chapter could be combined to form different ADL careers, so can the caregiving activities described in this chapter be combined to form complete caregiving careers. Figure 6.2 illustrates the most frequent transitions between the three caregiving phases. The following five most frequent careers are: 1

2

3

EP independent → Main support phase: NOP gives practical help → No escalation phase. Institution phase: EP lives in a long-term care institution → EP dies (N = 73). EP independent → Main support phase: NOP gives practical help → Escalation phase: NOP gives personal care → Institution phase: EP lives in a long-term care institution → EP dies (N = 43). EP independent → Main support phase: NOP gives practical help → No escalation phase. Institution phase: EP has a hospital stay prior to living in a long-term care institution → EP dies (N = 36).

Courses of family care 105 Main support phase n = 179

Escalation phase

Practical help 21

n=

Contact 3 n=4

n = 36

n = 21

n=

Long-term n = 173 care institution

43

63

Independent

Institution phase

n = 73

n=

1111 2 3 4 5111 6 7 8 9 1011 1 2 3111 4 5 6 7 8 9 20111 1 2 3 4 5111 6 7 8 9 30111 1 2 3 4 5 6 7 8 9 40111 1 2 3 44 45111

Death

Hospital Personal care

n = 27

Figure 6.2 The most frequent transitions between caregiving phases.

4 5

EP independent → Main support phase: NOP gives practical help → No escalation phase → Institution phase in hospital → EP dies (N = 27). EP independent → Main support phase: NOP gives contact → No escalation phase. Institution phase: EP lives in a long-term care institution → EP dies (N = 21).

It is remarkable that such a large proportion of EPs end up in long-term care institutions. It is also remarkable that such a large proportion of these old persons moved to an institution directly from home, after a main support phase in which they required only contact or practical help. The reasons for this phenomenon appear to be determined by three conditions, singly or in combination: • • •

the wishes of the old person the wishes of the primary caregiver the structure and function of formal services during the study period

In different modern societies, each of these three factors operate differently and in complex interactions. In addition, each factor is in a continuous state of flux. The result is differences in the form and distribution of caregiving careers between and within societies. And due to changes in social norms and expectations, family structure, work force participation of NOPs,

106 Courses of family care geographical mobility of NOPs, and changes in the formal caregiving system, caregiving careers will also change within the same society over time. I would expect that 50 years ago, when the municipal council started their discussions about establishing a nursing home in the town (see Chapter 2, p. 17), the caregiving careers of Larvik NOPs would be very different from those of the NOPs in the Larvik study. And I would expect the caregiving careers of today’s NOPs in Larvik to be different again.

Caregiving by offspring: the caregiving careers of sons and daughters Offspring from the dominant group of caregivers for the study population; they account, in fact, for 54 per cent of all caregivers (see Table 6.1 on p. 84). If we exclude childless EPs from our analysis, the proportion of the population for whom a child was primary caregiver totalled 74 per cent; 48 per cent of NOPs were daughters and 26 per cent were sons. Of the 227 offspring recorded as primary caregivers in this total data set, 140 (66 per cent) were daughters and 78 (34 per cent) were sons. The members of the study population had 203 daughters and 213 sons living in Larvik or a neighbouring municipality during their old age. Among these 416 locally resident offspring, daughters were almost twice as likely as sons to become primary caregivers. A few possible reasons for this situation might be: • • • •

gender role expectations; emotional conditions in the family; whether or not the offspring had a paid job (which daughters were less likely to have); and whether or not the offspring already lived with the old person (which daughters were more likely to do).

A more trivial explanation of the disproportionately high number of daughter NOPs could be that daughters had fewer siblings of the same gender living in the neighbourhood to share the caregiving. This possibility is suggested by the fact that the 78 sons who were primary caregivers had among them 11 brothers (14 per 100) and 21 sisters (27 per 100) in the neighbourhood; whereas the daughters had 64 brothers (43 per 100) and 20 sisters (13 per 100) in the neighbourhood. With fewer siblings of the same gender, it is reasonable to suppose that the probability of becoming the NOP increases, all other conditions being equal. And in the case of daughters, having many brothers is of little help. As interesting as the disproportionately large number of daughter NOPs may be, the Larvik study data do not directly address this issue. What is examined is the differing ways in which sons and daughters perform their caregiving work. I turn to the caregiving career model to analyse this question.

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In the majority of earlier studies, sons and daughters as caregivers are depicted as follows: •

•

Compared with the daughters, sons perform fewer household tasks and seldom provide personal care to their elderly parent (Horowitz 1985; Lingsom 1987; Montgomery and Kamo 1989; Stoller 1990; Nordhus 1993). There is a tendency for sons to withdraw and to hand the caregiving work over to female caregivers when the old person becomes more debilitated. Montgomery and Kamo (1989) maintain, in fact, that sons abdicate from the caregiving role if the parent’s need of care increases.

Certain researchers are sceptical of this negative picture of sons as caregivers. The Canadian sociologist, Neena Chappell, reminds us that the field data available are extremely limited, a situation that leads to even simpler generalizations (Chappell 1990). In their study of men as caregivers (in this case, 70 per cent of NOPs were spouses), Kaye and Applegate (1990) maintain that this area of research is rife with stereotypes, a viewpoint also forwarded by the well-known family gerontologist, Vern Bengtson (Bengtson et al. 1995). In the following pages, I have analysed the caregiving careers of primary caregiver sons and daughters, with emphasis on the content and duration of the caregiving work during the main support phase, the escalation phase, and the institution phase. First, however, various features of sons’ and daughters’ lives that could affect their caregiving contributions are considered. Table 6.6 gives an overview. More of the daughters were widows, rendering them unable to attain support from a spouse. It is possible, however, that they were freer from other family obligations, and that the caregiving role could serve to compensate for the loss of close contact that their husbands once provided. Another finding was that a larger share of the daughters lived with the elderly parent. The reasons seemed to vary among offspring: • • •

All the unmarried caregivers, whether sons or daughters, lived with their parent-EP. Among married NOPs, 32 per cent of daughters, but only 13 per cent of sons lived with their parent. All the widowed or divorced sons, but only 31 per cent of widowed or divorced daughters, lived with their parent.

Again, we are faced with data that must be interpreted with caution: the numbers are small and the differences are not significant. They do, however, point to yet another fruitful area for research, for they raise questions about the reasons why men and women in various marital situations and family crises are more or less likely to live with a parent, and they bring to

108 Courses of family care Table 6.6 The life situation of caregiving sons and daughters (selected indicators; % and years) Sons

Daughters

Marital status* Married Widowed Unmarried Divorced

80 3 10 7

69 20 7 4

Job situation during their caregiving career Employed, full-time Employed, part-time Not in paid employment

97 0 3

44 25 32

Living with care recipient

23

37

NOP’s health during the caregiving career Good Average Poor

68 11 21

50 35 14**

No secondary caregivers Extensive help from a secondary caregiver Care recipient had additional formal home help Average duration home help Care recipient had additional formal home nursing Average duration home nursing

9 53 68

28 18 71

5.2 years 50

5.4 years 55

0.6 years

0.6 years

(N)

(78)

(149)

Notes *At the time of the interview, i.e. after the period of caregiving. **Because of rounding, percentages do not always add up to 100.

the fore a host of gender and family history issues that may have significant bearing on the decision about which offspring becomes the NOP. Table 6.6 also shows differences between the health of son and daughter NOPs during the caregiving period. Although a larger proportion of sons than daughters had poor health (e.g. serious asthma, heart disease, or debilitating musculo-skeletal disease), clearly more of the daughters had only ‘average’ health (e.g. hypertension without complications, periodic neck and shoulder pain, or a diet-controlled stomach ulcer). Furthermore, a larger proportion of the sons had no health complaints worth mentioning. Although a larger proportion of daughters were alone in their provision of informal help, sons and daughters were equally likely to receive assistance from the formal services (home help, home nursing, or temporary admission to hospital during the escalation period). It is interesting to note

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that a large proportion of offspring NOPs had caregiving tasks in addition to their responsibility for their EP parent: providing assistance to another elderly family member or caring for a sick spouse, child, or grandchild. Although the figures tend to show that a larger proportion of daughters than sons were in this situation, the difference is not significant. The most marked differences between sons and daughters are in the areas of paid employment and support from others. Nearly all the NOP sons, but approximately half of the NOP daughters were fully employed. On the other hand, the sons were seldom alone in providing informal care, and were much more often represented as one of an NOP pair, as is typical of men who acquire a caregiving role (see p. 90). As Table 6.6 shows, however, a larger proportion of female than male caregivers had lost their spouse, which may have made it more difficult for the women to find a caregiving partner. We have seen that the ages of sons and daughters is the same: 60 years at EP’s death (see Table 6.1 on p. 84). We have also seen that the proportion of mothers and fathers who received care is approximately the same for both groups. Sons cared for their mothers in 73 per cent of the cases and daughters in 79 per cent. Thus systematic gender differences in the parents’ ADL careers (see Chapter 5) – and therefore their need of help – should not affect the challenges facing the sons and daughters as primary caregivers. As NOPs they are responsible for an equal proportion of mothers and fathers. The caregiving career: activity and duration of the caregiving work while EP lived at home • What type of care did the sons and daughters give their parents? • How long did their caregiving work last? First, let us examine these questions through data for the main support and escalation phases. Focusing first on the main support phase (Table 6.7), we find a certain difference in the caregiving activities of sons and daughters. For a larger proportion of sons than daughters, the primary caregiving activities during this phase constituted contact and personal care. Nevertheless, practical help was, as expected, by far the most common activity for both women and men. Neither are their differences in how often they performed these tasks. When we analysed the different types of practical help and personal care that had been recorded (see the criteria referred to on p. 36), no differences between sons and daughters were found. However, the main support phase lasted about twice as long for daughters as for sons. The fact that this difference is not statistically significant can probably be attributed to the distributions of the observations. For a small number of daughters, the values were so extreme as to make the average unnaturally high; the median values for the two genders are more alike. This matter is addressed again later. The proportion of NOPs that experienced the escalation phase (Table 6.8) does not differ significantly for sons (39 per cent) and daughters

110 Courses of family care Table 6.7 Sons and daughters who are primary caregivers; main support phase: activities (%) and their duration (years) Sons Primary caregiving activity Contact Practical help Personal care Duration of primary caregiving activity Average Median Range Standard deviation (N)

27 58 16

4.4 3.5 0.1–13 3.9 (78)

Daughters 18 76 6

6.6 4.8 0.1–33 7.3 (149)

(36 per cent). As noted above, 37 per cent of all the caregivers taken together experienced an escalation phase. During the escalation phase, personal care was clearly a more common activity for daughters than for sons. Partly for this reason, a difference in the frequency of caregiving is also found (figures not shown). During the escalation phase a larger share of daughters (64 per cent) than of sons (29 per cent) performed their caregiving activities several times a day. Again there was no difference in the various forms of personal care or practical help provided by the sons and daughters, as these terms have been operationalized in this study. If we examine the duration of the care provided by sons and daughters during the escalation phase (Table 6.8), the average for the daughters is three times as high as that for the sons. Discussion To this point, these findings appear to agree with the standard picture presented in family gerontology: • • •

sons and daughters do not perform the same type of caregiving work; daughters more often tend to accept responsibility for personal care; and the duration of the caregiving work is shorter when a son is the primary caregiver.

As for the primary caregiving activity (type of caregiving work), in these data the difference between sons and daughters is obvious only in the escalation phase. It is first at this stage that daughters assume greater responsibility for various kinds of personal care than do sons. Earlier in the caregiving career, the opposite applies.

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Table 6.8 Sons and daughters who are primary caregivers; escalation phase: activities (%) and their duration (weeks) Sons

Daughters

Primary caregiving activity Contact Practical help Personal care

0 52 48

0 24 76

Duration of primary caregiving activity Average Median Range Standard deviation

9 2.4 0.1–36 10.7

27 7.8 0.1–364 27.1

(N)

(78)

(149)

The duration of the two phases of the caregiving career is shorter when a son is the primary caregiver. However, one should not necessarily interpret this finding as support for an ‘abdication’ hypothesis. It may be that daughters acquire the caregiver role earlier than sons do, rather than sons withdrawing from the caregiving work earlier than daughters do. The threshold, then, may differ at both ends of the career. Although these data do not speak directly to the issue of thresholds, this is a clearly relevant question that is worthy of attention. If sons do give up the role of caregiver sooner than daughters do, their reasons may have nothing to do with their will or with failing motivation, as suggested by the word ‘abdication’. The sons in this study, who were more likely to be in paid employment, may have had difficulty combining caregiving with what they considered to be their financial obligations (see Table 6.6 on p. 108). Furthermore, there is, in our culture, a stronger taboo against a son providing intimate personal care for a parent, particularly his mother, than there is for a daughter providing the same care for either parent. It may, in fact, be the wish of the parent rather than the child that the son’s caregiving role be abandoned, as the elderly person’s needs become increasingly intimate. It may be that my category of practical help conceals a real difference between sons and daughters, for it does not distinguish between household tasks and other forms of assistance such as transport and maintenance of the dwelling. Therefore, we have no way of knowing if sons and daughters were performing the same tasks, or, if consistent with their gender roles, the son was building a ramp over the entrance steps when his mother returned from the hospital after her hip operation and her daughter was doing her laundry and cleaning her house. Whatever the

112 Courses of family care circumstances, the frequency of the practical help was equally high for sons and daughters. The case histories below serve to illustrate in greater detail the caregiving activity of some of the sons. Mrs Manvik’s son, Olav, who was an only child, had only recently been divorced when his mother got cancer and became dependent on help for dressing and washing herself. When she was discharged from hospital after her operation, she received assistance every day from the home nursing and home help services to carry out these ADL functions. Olav was with her every day after work, ensuring that everything was in order, preparing her meal, and giving his mother her medication (main support phase: practical help). Mrs Manvik also received help from two of her friends; one of them visited her daily; the other stayed with her for three weeks twice a year. In addition, at the suggestion of the home nursing service, Mrs Manvik stayed on three occasions in a nursing home for a period, in order to relieve the burden on her primary caregiver. After two-and-a-half years, she became weaker, and was primarily bedridden. She received more help from the home nursing service, and the number of hours of work done by the home help was increased, as was the contribution of her friends. Olav’s activity, however, remained essentially the same (no escalation phase). One evening Mrs Manvik seemed to worsen and her son contacted the doctor on call. Mrs Manvik was admitted to hospital the next day, and died one month later.

Mrs Skallist’s son, Magnus, was the oldest of two brothers, unmarried, and a seaman employed in foreign trade until the death of his father. At that point he took a job on shore and moved in with his mother, who, at 75, had had cancer and had broken her hip. Mrs Skallist managed well for several years until her cancer returned. Magnus then applied for home help. Three years later her health deteriorated and her son began to do the laundry and assumed all the shopping activities. This practical help lasted for two years (main support phase). Then Mrs Skallist suddenly became very weak, and was primarily bedridden. The doctor diagnosed heart failure. The escalation phase had begun. The doctor arranged for the home nursing service to provide personal care, but Magnus watched over his mother for the rest of the day when he was not at work. He also assumed responsibility for the housekeeping, in cooperation with the home

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help (practical help). After an escalation phase that lasted for 16 weeks, the doctor suggested that Mrs Skallist be admitted to a nursing home to give her son some relief. She died there three weeks later.

Mr Åsrum’s son, Sigurd, was an only child, unmarried, and living with his father, who was a widower. When Mr Åsrum began to lose his sight, Sigurd assumed responsibility for the housekeeping and began to read aloud to his father and to help him with his personal hygiene (main support phase: personal care). One day, about two years later, Sigurd came home from work to find his father lying on the floor. He had had a stroke. Sigurd obtained unpaid leave to care for his father at home, living on his father’s pension and his own savings. In the course of the next year, Mr Åsrum was admitted to a nursing home for a time to give some relief to his son. Soon afterwards he had a second stroke and became bedridden and incontinent. Sigurd nursed him at home for a month (escalation phase). During the last two weeks he suffered from exhaustion and asked for help from the home nursing service. On the day the father was to enter a nursing home, he died at home.

Besides their obvious multiple caregiving activities, these three sons have one thing in common: none of them had either a sister or a wife. It is impossible to decide from the material at our disposal whether this lack of a potential female caregiving activates the ability in men to provide care in excess of the traditional expectations of their gender roles, whether such a situation merely forces sons into a caregiving role, or whether more than one of these factors apply simultaneously. Although these three sons, unlike most male caregivers, had few relatives to help them, we are given the impression that they received a great deal of support, primarily as a result of the attitude of health and social welfare services towards them. Not only did a doctor and the nursing service take the initiative to provide extra help, but in the case of Mrs Manvik and Mrs Skallist, formal services assumed full responsibility for the personal care of the mothers at home. Perhaps these services maintained the desired limits of the male-asintimate-caregiver-to-mother taboo or perhaps the sons limited their tasks for other reasons. Even if Mr Åsrum’s son, Sigurd, is a unique case, the caregiving career nevertheless provides food for thought. A son, too, can put caregiving before his job (eight daughters and two sons gave up their jobs to assume the caregiving role). Furthermore, when a son is caring for his father, the

114 Courses of family care

NOP son or daughter

1.0

Son Daughter

0.8

0.6

0.4

0.2

0.0

0

10

20

30

40

Total home care in years

Figure 6.3 Duration of the total home care when the primary caregiver is a son or a daughter.

taboos are easier to handle than when he is caring for his mother. In this case, taboos did not prevent Sigurd from dealing with his father’s incontinence. We now move to the analysis of the duration of home care, considering all activities in both phases as one. This pattern is shown in the two survival curves in Figure 6.3. This figure shows that the curves for total home care run more or less parallel for about ten years. For a son, the longest total caregiving episode is 13 years. For 14 of the daughters this length of time was exceeded, the longest duration of home care being 33 years. These 14 cases raise the average duration of home care by daughters considerably. Without these 14, the difference in the average duration of home care by sons and daughters disappears completely, becoming 3.8 years for daughters and 3.9 years for the sons. Who are these 14 daughters who continued to provide care for a parent longer than any son and most of the other daughters did? What caregiving situations do they reflect? As regards the factors affecting the caregiving, they are no different from the other daughters. The caregiving activity they

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perform is somewhat different, however, insofar as their caregiving work is marked to a greater extent by practical help, with less personal care than provided by the other daughters or sons (figures not shown). The interview material was examined in order to seek the motivations of the 14 daughters for completing these long caregiving careers. Why did they stay the course to the end? There seem to be three different reasons. • • •

There are those who claim that the motivation was love. Others saw their lengthy caregiving as a duty. Finally, there was a group who said that their elderly parents, for all intents and purposes, forced them into an extremely long caregiving career.

Let me illustrate these long caregiving careers with one in which the daughter was motivated by love and one in which the daughter was essentially tyrannized by her elderly mother. Mrs Melau had impaired vision from glaucoma from the age of 77, as well as reduced mobility following three fractures. Her daughter, Kristin, helped her mother for 16 years. She was employed parttime and was married with two children aged 16 and 17 when their mother’s caregiving career began. The main support phase lasted for almost 15 years and consisted primarily of providing transport and doing the shopping (practical help). Kristin drove her mother everywhere she wanted to go. Her husband, Erlend, rode his bicycle so Kristin could have the car. Kristin reports that she saw her mother at least every second day. At the age of 92, Mrs Melau began to go downhill, developing a weak heart and gangrene in one of her legs. In the end, the leg had to be amputated. During the escalation phase, which lasted 14 months, Kristin helped her mother to walk, dress, and wash herself (personal care). During the course of this phase, Mrs Melau had a home helper for five months and for two short periods had home nursing to treat sores. She was transferred to a nursing home after her operation, but after one year she moved to Bøkeskogen eldresenter. The institution phase lasted for a total of 4.5 years. The daughter says: ‘We had a very good relationship, we were not only mother and daughter, we were also friends. We could talk to each other about everything. It was very rewarding to be able to do so much for my mother. I enjoyed taking her out with me, because she was always so grateful and so positive. I have no negative experiences at all to report.’

116 Courses of family care The primary caregiver for Mrs Lunde was her daughter, Ingeborg, who was a homemaker – a childless widow who had lived in the same house as her mother for her entire life. She told me: ‘I was the only one who was allowed to dress her and wash her. Just me. I have quarrelled with her for many years, but one does a lot for one’s family, as you know. . . . She was stubborn, difficult, grumpy, and scheming. She thought that what I did was nothing. Many times I had to say to her: “You really must behave better, or you will have to go into a nursing home.” ’ The main support phase lasted for about ten years, and Ingeborg provided personal care every day. Personal care began gradually, but Mrs Lunde found it increasingly difficult to move about because of an old hip fracture. The transition to the escalation phase, which lasted for seven years, occurred after a serious head injury. Personal care increased in extent and frequency. ‘I remember that things had to be done at once. Also in the night; my mother rang a cowbell. She let me try to get help in the home, but I was not to use the municipal services. But she did accept home nursing. I hardly ever left the house; I had to give up everything. I became lonely; it was almost like serving a prison sentence. My arms were cracking, and my back was worn out. One day, Erna [the head of the home nursing service, who confirmed the daughter’s story] said “You don’t look at all well. You must have some relief.” We almost tricked mother into the nursing home; I had to promise to visit her every day, which I did. She said “Don’t send me there again.” Six months afterwards, Erna said “This cannot go on, my girl. We now have to get her into the nursing home for good.”’ The institution phase lasted for four weeks.

The institution phase when a son or daughter is the primary caregiver Table 6.9 shows the type and duration of the institution phase when NOP is a son or daughter. As can be seen, regardless of the gender of the offspring caregiver, elderly people are equally likely to spend their institution phase in a hospital, long-term-care facility (nursing home or home/assisted living facility) or to have no institution phase. I found these results to be surprising, having expected the institution phase to have been shorter when the caregiver was a daughter rather than a son. That differences in the average duration of in-home care do not affect the total stay in an institution prior to death, suggests that daughters may acquire a caregiving role earlier, and not that sons withdraw from this role earlier. Perhaps the threshold for believing that a mother or father

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Table 6.9 Sons and daughters who are primary caregivers; institution phase Sons

Daughters

Institution phase in hospital Proportion Mean duration Range

12% 17 days 1–38 days

13% 14 days 1–70 days

Institution phase in a long-term care institution Proportion Mean duration Range

81% 3.9 years 0.01–16.0 years

81% 3.9 years 0.01–16.4 years

No institution phase (death outside an institution) (N)

7% (78)

6% (149)

needs help is lower for the daughters than for the sons. Perhaps sons find it easier to live with the fact that the parents do not receive assistance. Or perhaps elderly parents simply expect less of their sons. Sons and daughters: conclusion Generally speaking, the results of this analysis of the content and duration of the caregiving career do not agree on certain important points with the results of much earlier research. As mentioned at the beginning of this chapter, it is usual to maintain that the caregiving work performed by sons and daughters is marked by traditional gender-role patterns and that sons have a tendency to withdraw as the parent’s debilitation increases. After analysing this material, including data from all phases of the caregiving career, I find that the content of the caregiving work of primary caregiver sons and daughters varied little, except in the escalation phase. During this phase a larger percentage of daughters than sons provided personal care. For this study population, however, this phase was experienced by only a minority of the caregivers, regardless of gender, and with few exceptions it was short. Moreover, the percentage that did not experience an escalation phase is similar for sons and daughters. The duration of the caregiving work is shorter for sons than for daughters; however this gender difference was created by a small minority of daughters who, for various reasons, became involved in extremely long caregiving careers. However, the type of institution phase the old people experienced was the same, regardless of the gender of the primary caregiver, and was equally long whether NOP was a son or a daughter. All

118 Courses of family care these findings contradict the assertion of a general ‘abdication’ by the sons as the need for care increases. I have suggested alternative explanations of the observed differences. First and foremost is that, in this population, the factors affecting the caregiving situation differ for sons and daughters and there are certain taboos that may prevent sons from providing personal care for their mothers. It may also be that the threshold for assuming the caregiving role is lower for daughters than for sons. Such thresholds may be connected with role expectations for daughters, but also with a desire for contact (a larger share of the daughters had lost their spouse), a lack of paid employment obligations, and the fact that more of the daughters already shared a home with the parent. I think there may well be real cultural differences between sons and daughters in Larvik and offspring studied in other places. The fact that, in the Larvik study population, it was more usual for sons than for daughters-in-law to become primary caregivers (see Table 6.1 on p. 84) suggests that, in the cohorts studied, the perception of the male role may be different from, for example, in the US, where most of the other studies have been conducted. Norwegian welfare and gender policies have aimed at equality for decades. This goal has become common to all major political parties, and must be interpreted as a widespread value in today’s Norway (Romoren 1996). I hypothesize that the similarities between the caregiving work of men and women documented here are associated with national culture and policy. The Scandinavian welfare model leads to a shared responsibility for caregiving between family and society (Lingsom 1997). Over time this means that women are able to shape their caregiving roles more freely. The equal use of formal home care by the care recipient, regardless of gender of the caregiver, and the equal length of the institutional phase for male and female caregivers may be an early indication of some integration of this ideal into Norwegian society.

Did it ever become too much for you? The spring that mother’s attacks of short-windedness and fainting increased, I gradually felt that it had become too much. It wasn’t that she needed so much help, but she was so afraid, and could call me at any time of the day or night. These are the words of a son who had acquired the role of primary caregiver, spoken at the first test interview I arranged. He referred to the escalation phase after Mrs Lysebo had developed symptoms of the heart disease, from which she died two-and-a-half years later.

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Because similar feelings were expressed at several other test interviews, I decided to analyse this ‘became too much’ phenomenon over the entire study population. Like much other research on caregiving, studies on caregiving burdens are often based on material from the care of persons with dementia; there are few population studies and even fewer longitudinal studies in this area (MaloneBeach and Zarit 1991). Although the findings of such research may be contradictory, and although much caregiving work also has positive consequences, the research on caregiving stress has documented that the work can lead to psychological strain, reduced quality of life, and, in the worst case, depression or other health problems. It also appears that people caring for patients with dementia find the caring work to be a heavier burden than others do (Chappell 1990). There is a lower consensus as to the factors leading to negative consequences of the caregiving burden. As Nordhus (1993) suggests, there are several possible explanations for this lack of concordance: • • • •

weak theoretical models; differences in sampling methods; differences in the operationalization of important terms; or incompatible measuring instruments.

Thus, there is great debate about the relative importance of different types of caregiving work (contact, practical help, or personal care), the extent of help required by the elderly, support from other helpers, the relation between caregiver and care recipient, and myriad other such caregiving topics (Tennstedt and McKinley 1989). Methodological issues During the interviews with relatives, the following questions were asked, in the hopes of shedding light on problems connected with the caregiving burden: • • • • •

Did it ever become too much for you? (And, if ‘yes’) in what way was it too much? Did you ever try to limit your caregiving responsibility? (And, if ‘yes’) how did you do this? (If you did try to limit your responsibility) did your limitation work?

In the following section, the answers to the question ‘Did it ever become too much for you?’ are treated as indicators of what Pearlin and colleagues call role overload. The term alludes to the subjective experience of being overcome by caregiving tasks – that the caregiving work has extended beyond one’s control (Pearlin et al. 1996: 292; Aneshensel et al. 1995: 80).

120 Courses of family care

Background and contextual factors

Primary and secondary stress factors

Outcomes

Moderators (buffering effects)

Figure 6.4 Pearlin’s stress process model. Source: Aneshensel et al. (1995: 36).

The feeling of role overload is one of several possible so-called primary stress factors in the Pearlin et al. model for stress processes in the caregiving career. Simply drawn, their model looks like Figure 6.4 and operates with two kinds of stress factors: primary and secondary. The primary factors are those connected to the caregiving work itself. They may be objective; that is to say, they may reflect the old person’s need of help, expressed in the form of ADL or IADL impairment, degree of cognitive impairment, or behavioural disturbances. Or they may be subjective; that is to say, NOP’s emotional reactions to the caregiving work, such as experiencing that it has become too much of a burden (role overload), or feeling trapped in an unwanted situation. The objective stress factors are the cause of the subjective ones, but both can be modified or ‘buffered’, for example, through help from others, through use of formal services, or through adequate coping mechanisms. Secondary stress factors are factors that are affected by the caregiving responsibilities, but really belong to some other area of NOP’s life. Pearlin’s notion is that secondary stress factors arise when the primary factors reproduce themselves (stress proliferation). They can also be objective (for example, problems and conflicts connected with NOP’s occupation, economic situation, or other family members that result directly or indirectly from NOP’s caregiving work) or they can be subjective (for example, reduced self-respect). The secondary stress factors do not necessarily affect the caregiving situation to a lesser degree than the primary ones. The secondary factors also affect NOP’s caregiving work, but like all the other stress factors, they, too, can be modified or buffered.

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In addition to the stress factors, there are certain background factors which can affect the stress factors, the buffers, and the outcome of the stress process. Background factors include, for example, the age, gender, marital status, and socio-economic status of NOP and EP. In Pearlin’s model, the stress processes caused by the caregiving work can produce outcomes of reduced quality of life, depression, or some other health complaint. I must repeat that, in this model, the focus is directed exclusively at the negative consequences of the caregiving role. In the Larvik material, 56 per cent of the primary caregivers (59 per cent of female NOPs and 49 per cent of male NOPs) indicated that the work also had positive consequences. In this study, the indicator of role overload consisted of only one question: ‘Did it ever become too much for you?’ The question merely required the answer ‘Yes’ or ‘No’. The answers express an evaluation, after the caregiving was over, of whether such a situation had arisen at any time in the course of the caregiving career. This question was asked near the end of the conversation, by which time the caregiving career had been explained and discussed in detail. The caregiving career was fresh in the minds of the relatives, even though it had ended, on average, at least four to five years earlier. The answers to the question were coded for those who had, themselves, been the primary caregiver. While making reservations for errors of memory and retrospective interpretations, I regard the answers as being sufficiently reliable expression of NOP’s feelings of overload once or several times in the course of the caregiving career. Why did it become too much? All in all, 46 per cent of the primary caregivers (51 per cent of female NOPs and 33 per cent of male NOPs) said that, at one time or other in their caregiving career, the responsibility had become too much for them. In general, the overload situations described so vividly by the informants and the reasons for the work ‘becoming too much’ fall into four categories: 1 2 3 4

EP’s health worsened (57 per cent) NOP tired of the caregiving work (21 per cent) NOP was required to perform new caregiving tasks (9 per cent) NOP became ill (6 per cent)

The majority (62 per cent) of respondents reporting that the work ‘became too much’ (62 per cent of female NOPs and 60 per cent of male NOPs) said that they did not do anything to try to limit their caregiving work. They, like Mrs Lysebo’s son, Håkon, chose to continue along the same path, or to ‘ride out the storm’. The caregiving situations described in both this and the preceding chapter illustrate different aspects of the problem of ‘becoming too much’. The

122 Courses of family care member of the study population to suffer ADL loss earliest was Mrs Bakkane (p. 38), who had a long ADL career with dementia, both at home and in an institution. In this case, the primary caregiver found the caregiving work to be too much for her early in the course of her caregiving career. She became tired, and tried to limit her own efforts by involving her sister, but without success. She finally applied for a place for her mother in a nursing home. Mr Skogen (p. 38) did not suffer any ADL limitation until he was more than 100 years old – the latest debut in the entire study population. He had moved into Alders Hvile 12 years prior to the onset of his dementia, because he did not want to be a burden to his family. His daughter, Ragnhild, never felt the burden to be too heavy for her, even though she and her siblings expended much time on his care during the last two years of his life. Mrs Aske (p. 64) – the member of the study population with the longest ADL limitation – received help from her daughter, Runhild, for a total of 28 years, including personal care for 19 of these years. It was obvious that this became too much for her. The interviewer decided to break off the interview because Jofrid became deeply distressed when the conversation touched on her caregiving career. Two of the three sons described earlier in this chapter (Mr Åsrum’s son, Sigurd, and Mrs Skallist’s son, Magnus) thought that the caregiving role became too much for them. Mr Åsrum’s son reported being exhausted during the last two weeks his father lived at home, and limited his role by applying for a place for his father in a nursing home. Mrs Skallist’s son also thought the burden became too much when his mother’s health deteriorated and she became bedridden. Even so, he did not limit his role as caregiver, but when, after four months, his mother’s doctor suggested that she be admitted to a nursing home for a time to ‘give him a break’, he was relieved. Mrs Manvik’s son did not find the task to be too much for him. As his mother’s need for help increased, he received greater assistance from secondary helpers and from the formal services. Thus he limited his efforts in advance, but said at the interview that he had had trouble with his conscience for not having personally done more for his mother. Accumulation of caregiving responsibilities A caregiving constellation which more than usually led to the burden of ‘becoming too much’ occurred when the primary caregiver was faced with several challenges at once (in Pearlin’s terminology: a larger objective, secondary load). Almost one-third of the primary caregivers had another caregiving task in addition to responsibility for EP, usually connected with another old person in the family. Some of them, however, faced other challenges as well. Burdens accumulated for several reasons:

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• • • • •

NOP became ill; NOP experienced marital problems or divorce; NOP experienced family conflicts; NOP experienced the loss of a spouse, sibling, or offspring; or NOP unexpectedly assumed other caregiving responsibilities (connected with other elderly persons, a sick spouse, offspring in need of support in connection with divorce, a sick son or daughter, or sick grandchildren). Mrs Istre’s primary caregiver was her daughter, Valborg, whose caregiving career began when her mother’s leg was amputated. The main support phase lasted about two years, and consisted of practical help with some supervision (shopping, laundering, and staying the night for a time). During the course of these two years, Valborg assumed other responsibilities because her father got cancer and her brother died. She left her job to care for her father one year before he was admitted to a nursing home. Her brother’s family was experiencing a number of difficulties which NOP helped to solve. Mrs Istre also became weaker and needed more supervision and contact during this period (escalation phase). ‘I flew to both places’ said NOP, ‘home to mother and to the nursing home to see father. My husband got fed up, and he dreaded the weekend because I was so involved with my parents. I felt pulled in all directions. My husband and I had little to talk about, because everything had to do with them. This had a bad effect on our relationship.’ Then Valborg’s husband had an accident and became disabled. He died six months after his mother-in-law.

In the case of Miss Holhjem, an unmarried woman, the primary caregiver was a nephew, Per, working in pair with his wife, Solveig. The caregiving career began when Per was required to take over both practical and economic responsibility for his aunt’s house. During the main support phase the primary activities were shopping, carrying firewood, shovelling snow in winter (all practical help), and daily visits. This phase lasted for three years. Towards the end of this phase, an unmarried uncle got cancer, and Solveig cared for him for one year. At this time Miss Holhjem began to show the first signs of dementia. Then Per and Solveig’s daughter underwent a difficult divorce and moved back into her parent’s home with her children. ‘The hardest year we had,’ said Per and Solveig.

124 Courses of family care However, after a time, their uncle was admitted to a nursing home and their daughter’s situation improved. Miss Holhjem, the old aunt, became worse, however, and the escalation phase began. Per kept an eye on her for three years, visiting her once or twice a day. Solveig relieved him of some of the burden, and the two of them sometimes visited the old woman together. Miss Holhjem did not want to go into an institution; nor did she want a home helper. She was exploited economically by a female neighbour, and never had any money. Several times she almost caused a fire. The caregiving situation changed when Miss Holhjem had a sudden fall and broke her hip. She went straight from hospital to a nursing home.

A total of 45 caregivers (11 per cent) (35 women (12 per cent of all female NOPs) and ten men (9 per cent of all male NOPs)) had to cope with two or more other challenges in addition to their responsibility for their EP. This caregiving constellation is both clear and striking. Nevertheless, there is by no means a clear connection between an accumulation of caregiving responsibilities and the feeling of overload. Only 58 per cent of those who had two or more additional responsibilities thought that the whole situation was too much for them. Although the percentage that experienced role overload is higher for this group than for the other caregivers, one would have expected it to be greater yet. Factors associated with the memory of overload Finally, I shall examine various factors which may be connected with the caregivers who stated that, at one time or another, the burden became too much. Four conditions are included: • • • •

primary loads secondary loads background factors modifying and amplifying factors

In the terminology used here, loads are equivalent to what Pearlin and colleagues call stress factors (see Figure 6.4 on p. 120). I have chosen the term loads to emphasize that the ambition here is not to do advanced stress research, but to study conditions associated with a recollection of overload in the caregiving role. Modifying and amplifying factors are factors which, in certain situations, may serve to reduce the negative effects of the primary and secondary loads, and in other situations may serve to increase them.

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The individual variables included in the four groups are: •

Primary loads: – –

•

Secondary loads: – – –

•

whether NOP had other duties during her/his caregiving career; whether NOP had impaired health in the course of the caregiving career; and NOP’s employment situation during the caregiving career.

Background factors: –

•

the content of the caregiving phase: contact, practical help, personal care; and whether the caregiving career included an escalation phase (regardless of content).

NOP’s gender.

Modifying and amplifying factors: – – –

whether NOP and EP lived together during NOP’s caregiving career; whether NOP received help from others in the course of the caregiving career; and NOP’s relationship with EP during the caregiving career.

The variables representing primary loads indicate the ‘weight’ of the caregiving career. Ideally we would have accounted for the duration of the caregiving work, but a value for this variable was lacking in too many of the caregiving careers. In the case of secondary loads, two conditions that stood out clearly in our talks with the relatives, in addition to occupational activities, were other responsibilities and the caregiver’s own health. The only background factor included in the analysis is the gender of the caregiver. The possibility of NOP’s gender being of importance is based partly on the view expressed in the literature that men may have a different attitude towards caregiving work than do women, and a different threshold for experiencing load (Johansson 1999). I have also taken into account the information obtained at the interviews (51 per cent of the female caregivers and 33 per cent of the male said that the burden became too much). The modifying and amplifying factors refer to whether the old person and the primary caregiver lived together, whether NOP had any help from others, and the kind of relationship that existed between NOP and EP during the caregiving period. It goes without saying that NOP’s relationship with EP during the caregiving period helps to determine if the work is considered to be a burden (cf. the contrast between the good relationship that existed between Mrs Melau and her daughter, Kristin, as opposed

126 Courses of family care to the tyrannical Mrs Lunde and her daughter, Ingeborg). I also assumed that sharing the housekeeping or sharing a dwelling could make the caregiving work easier in practice, and therefore serve to reduce the burden on NOP. When NOP and EP live in the same house, however, the caregiver is tied more strongly to the caregiving work, thereby increasing the possibility of feeling overload, of being trapped. The explanatory model is analysed by means of logistic regression and the results are presented in Appendix A, Table A.8. The table shows that, other factors held constant, the health of the caregiver during the caregiving period, and the relationship between NOP and EP during this period, had strong effects on the recollection of role overload. Also primary loads – especially if the caregiving career included an escalation phase – were of major importance. In this analysis, whether the primary caregiver had other responsibilities is also important, as is NOP’s gender. Other things being equal, the chances of experiencing overload are higher for female NOPs. Living with EP also seems to increase the probability of the burden becoming too much. Neither paid employment nor the presence of another caregiver seems to be of importance. Discussion Several of the above findings conform with the results in Inger Hilde Nordhus’s study of Norwegian family caregiving (Nordhus 1986; 1993) and those of a series of other studies from international gerontology (Gatz et al. 1990; Chappell 1990). It must be assumed that many of the respondents in the Nordhus study were experiencing an escalation phase (e.g. EP was waiting to be admitted to a nursing home), and the sample does not include a spouse caregiver. However, EP’s age is consistent with that of our study population, although the primary caregivers are, on average, somewhat younger than in our study. Nordhus does not measure the effect of the caregiver’s health on the degree of subjectively experienced load. However, as in this study, she finds that the primary loads – including the duration of the caregiving – are very important. She also found, consistent with the results of the Larvik study, that a positive relationship with EP had a moderating effect on the load experienced by NOP, and that occupational activity and support from a personal network did not have a significant effect on the reported load. NOP’s gender did have such an effect, however. Nordhus suggests that this gender finding is a result of the fact that female caregivers in her study provided more hours per week of care than did their male counterparts. She also found a significant effect of age, with the oldest caregivers (older than 60 years) reporting less load than their younger counterparts. Pearlin and colleagues also found a strong association between primary loads (stresses) and caregiver role overload (Aneshensel et al. 1975). More specifically, it was the old people’s behaviour problems that had the

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greatest effect (remember that Pearlin’s sample consisted entirely of caregivers of persons with dementia in old age). As time goes on, the effect of the primary stresses and of earlier experiences of overload is intensified. After three years of follow-up, the factors correlating most strongly with feelings of role overload were increased functional impairment, the elderly person’s behaviour problems, and earlier experiences of overload. Nordhus’s study concentrated on a specific period in the caregiving career: the period prior to admission to a nursing home. Pearlin and colleagues studied a longer period of caregiving, but were concerned, on the other hand, only with caregivers of persons with dementia. When data are available from a whole population and on entire caregiving careers, as they were in the Larvik study, the caregiver’s recollections of the burden becoming too much are to a large degree associated with three conditions: • • •

the caregiver’s own health the relationship between the caregiver and the care-recipient the extent of the caregiving tasks

Returning to the analytical model, it is seen that primary loads, secondary loads, and modifying/amplifying factors all have some effect on the feeling of overload. It is reasonable to suppose that these conditions are interrelated. For example, a poor relationship with a mother or father could intensify health problems believed to be caused by hard caregiving work (cf. Mrs Lunde’s tyrannized daughter). Similarly, health problems could worsen the relationship between caregiver and care recipient, especially if a parent does not sufficiently appreciate the offspring’s sacrifice and hard work. The term escalation phase implies, by definition, that the caregiving load becomes heavier, and that escalation of the caregiving work and the feeling that it became too much may, in some cases, be synonymous in the mind of the caregiver. Being a female caregiver implies, in itself, a greater likelihood of overload, for several possible reasons: • • •

women may be exposed to loads that are not disclosed by the analytical model presented above; men may have higher thresholds for reporting role overload (or may consider it unmanly to report that they are burdened by their responsibilities); and women and men may cope with the burden of the caregiver role differently.

Several of these conditions may apply simultaneously, helping to explain the independent effect of gender in the analytical model. There is a certain accumulation of effects along the gender dimension in this study. A larger proportion of female than of male caregivers had

128 Courses of family care poor health; a larger proportion lived with the old person; and a smaller percentage engaged in paid employment (in regard to primary loads, secondary loads, other caregiving responsibilities, and the relationship between EP and NOP, there is no difference between female and male caregivers). Thus the factors poor health and living with the old person, both of which tend to give a sense of overload, are discovered more frequently among women than among men. This effect, together with the independent effect of gender, helps to explain why the percentage of caregivers that report role overload is 18 per cent higher among the women than among the men, or that the likelihood of women to report a sense of overload is 55 per cent higher than for the men. Caregiving work and health The apparently close association between health of the caregiver and feelings of overload naturally raises the question of whether the health problems experienced during the caregiving career are a result of the wear and tear of the work itself, or whether they more often have another origin. Such a question cannot be answered without prospective data and the use of control groups. Such a design has not been used in this study; nor, as far as I know, has it been used in any other gerontological study of this subject, but it is clearly an important area for research. Nevertheless, I have tried to answer this question by means of a rough estimate by making a medical assessment of the possible causes of any health problems described by the primary caregiver before, during, and after the period of caregiving. The results show that, in 30 per cent of cases, the health problems described by the primary caregivers can be attributed to their caregiving work. Most of the deterioration in the primary caregiver’s health during the caregiving career was either caused by other stresses or was a result of ordinary age-specific disorders typical of that particular phase of NOP’s life. In the cases showing a clear association between the health of the primary caregiver and the burden of caregiving, the gender differences are obvious: female caregivers are almost three times as likely as male caregivers to suffer significant health problems. The cause of this difference could be many and varied: larger primary loads, less support, the possibility that women are more likely to suffer health problems as a result of this type of burden, or that they do not cope with these particular burdens as well as men do, to name but a few. However, a more detailed evaluation of these or other possible reasons for the marked gender differences found in the Larvik study lies outside its framework. In short, these gender differences yield more questions than answers, and are suggestive of multiple studies of caregiving for the elderly in general, and EP–NOP relationships in particular.

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Conclusion The most important result from this study of primary caregivers and their caregiving careers is that both informal and formal care are resources that almost all old people rely upon sooner or later. Informal care primarily covered various practical needs in everyday life, frequently and in the long term; the formal care was concerned mainly with personal care. Informal and formal care became intertwined as complementary phenomena. Caregiving and the work it entails is a process that unfolds over time, taking the form of sequences and careers with changing content and of varying length. In spite of the large distribution, there is not a single person in this study population of 434 elderly people who did not need some type of informal care before death, even if it merely meant that the caregiver was concerned about EP, and provided contact and emotional support. Gerontology’s current view of the relationship between caregiving and gender should not be regarded as categorical; there are differentiations, and the Larvik study has once again demonstrated the over-simplicity of gender role-based models. Once again, research has shown that the large majority of caregivers are women; and, given the age of the old people in our population, many of their spouses were dead and most of the informal care falls heavily upon the daughters. However, many of the sons in this study made a substantial contribution to the caregiving work, and, when they have actually acquired the caregiving role, their assistance can be very like that of daughters. The large and extreme long-term caregiving tasks are a typical challenge to the daughters, but it has been shown that this may apply to a small, and in many cases, special group of daughters. A larger percentage of women than men experience overload in the role of primary caregiver. The findings indicate that this experience is reflected in health problems that may arise in the course of the caregiving career – problems experienced more often by women than by men. Women may also find the caregiving to be a greater burden because they are more vulnerable to problems in relation to their old relative and to caregiving work. This is an area of research requiring longitudinal and cross-cultural attention. Much has been said about today’s caregivers belonging to a ‘sandwich generation’ or a ‘Janus generation’ – those who are sandwiched between caring for elderly parents on one side and their own children on the other, sometimes while caring for the needs of other relatives or friends. However, this constellation is not a typical feature of the caregivers associated with our study population. If they found themselves squeezed, it was more likely to be between the health of their parents on the one hand and their own health or their spouses’ health on the other. Yes, they, themselves, are beginning to reach old age. Many of them are old already.

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Note 1

In a study of persons in an institution for the aged that I conducted in NordTrøndelag county in Norway between 1995 and 1997, 9 per cent of spouses, 37 per cent of daughters, and 28 per cent of sons served as NOPs. The old people (N = 1091) had then been in an institution for an average of 2.9 years. According to information from the families, the distribution of NOPs during the period before institutionalization was 16 per cent of spouses, 29 per cent of daughters and 25 per cent of sons. Thus it was first and foremost the daughters who replaced spouses as primary caregivers after the old persons had entered the institution (Romøren 1999).

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7

Courses of formal service use

Just like their children and grandchildren and great-grandchildren, elderly people differ widely in the amount of health services they employ. As shown in Chapters 5 and 6, even among the oldest old there is a substantial group that is relatively healthy until their last days or weeks of life, while others are dependent for many years upon comprehensive help. On average, however, health service use increases by age for all types of health services, a pattern that is found across countries (Rubenstein and Nasr 1996). There is a wide range of research literature on old people’s use of the health services. The explanatory factors obviously vary as a function of the type of service studied: contact with GPs, use of medication, hospitalization, and length of hospital stay, for example. The explanations also depend on the unit of analysis: • • •

contact with a service (e.g. contact with a doctor or a hospital in the course of a specific period); duration of a service (e.g. length of stay in an institution for the aged); or frequency of use (e.g. number of hospitalizations in the course of a year).

Whatever the explanatory factors or whatever the unit of analysis, the recurring finding is that the various kinds of need-related factors – expressed through self-reported health, symptoms, diagnosed illnesses, or loss of function – tend to surface as the most important variables (Wan 1989; Wolinsky 1990; Rubenstein and Nasr 1996; Linden et al. 1997). In the Larvik study, I was interested in understanding the use of health services among the elderly as a process – to understand the single event within the frame of a course or a sequence. Many of the presentations of specific cases in the preceding chapters show, for example, how an admission to hospital can belong to several different types of careers. It may be a passing incident in the life of a previously healthy person who lives at home and becomes independent again upon returning home. It may be the

132 Courses of formal service use beginning of a long career of dependence in a nursing home. It may be a brief episode in the career of a person living in a nursing home – a person with dementia having broken a hip, for example. Hospitalization may also be confinement in a ‘deathbed’, or a prelude to death – as in the case of a terminal stage of cancer or in the case of acute illness like cardiac infarction, in which a previously healthy person dies in the course of a few hours. Research problems in the formal service part of the Larvik study In this chapter I analyse the course of use of services in four steps: 1 2

3

4

The first analysis focuses on the probability and total duration prior to death of stay(s) in hospitals, nursing homes, and assisted living facilities; and of the use of home-based services. Second, I analyse transitions between home and institutions, and between institutions, during the years prior to death. Here the total duration is categorized into its separate factors. The use of services is analysed as a sum of states yielding a more dynamic picture. An important element is the description of patient flows in the hospital and nursing home, demonstrating the many different functions that hospitals and nursing homes can perform in connection with old people’s health problems in modern times. As a third step, I examine different types of total individual courses following individuals on their way through the health services (if, indeed, they took that route), to discover typical careers as they take shape in the system of services and during the period of analysis. The purpose is to estimate the probability of experiencing different health service careers and to discover the factors associated with the most common ones. The analysis corresponds to those performed in the previous chapters on ADL careers and caregiving careers. As in earlier chapters, in the following pages the term ‘career’ is often used synonymously with the term ‘course’; that is to say, it describes the total succession of user states in the system of services. Finally, I return to my starting point: the analysis of the probability and total duration of stays in hospital, in a nursing home, and in assisted living facilities prior to death. What factors help to explain variations in these dimensions? The importance of the following factors is explored: • •

socio-demographic conditions (age, gender, socio-economic status, marital status); course of functional disability, or ADL career (serious dementia, severely dependent, frail, fairly healthy); and

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•

informal caregiving resources (if the old person lives alone, and who is the primary caregiver).

In studies of old people’s use of health services, much attention has been focused on the probability or risk of institutionalization, especially of longterm institutionalization. In a health policy context, it is as useful to explain differences in the length of time that old people spend in different institutions as it is to examine the specific reasons they have been admitted. In Larvik, as in most places, the system of services is always changing. In Larvik, however, the basic elements have remained the same for most of the study period: hospital, nursing home, assisted living facility, home help, and home nursing (see Chapter 2). These elements comprise a structure of services found in different variations in many countries of northern Europe, and in Australia, New Zealand, and North America (see Havens et al. 1996). In the following sections I focus on what old people in Larvik can teach us about the ways in which this structure of formal services may be used during the years prior to death, and what factors explain variations in use.

Total use of separate services before death For the cohorts participating in the Larvik study, the use of home-based services, nursing homes, and assisted living facilities was a phenomenon belonging to old age. Although they also utilized hospitals, the use of hospitals, of course, does not apply exclusively to their old age. Few members of the study population were admitted to hospital during their youth, but it was not uncommon for them to have one or more hospitalizations in their fifties, sixties, or seventies. To ensure that the hospitalizations referred to here primarily reflect health problems in old age, I have only included hospital stays during the last ten years of life. The limit is set arbitrarily, but the period seems to include most of the hospitalizations during the old person’s ‘wanderings’ among the health services before death. Between 10 and 20 years before death, 44 per cent of the study population had experienced one or more hospitalizations, for a total of 375 hospitalizations. These events are not included in the analyses presented below. Total use of institutions prior to death Table 7.1 shows the proportion of the study population that had used the various institutional services. It also shows the number of stays and their total duration in the form of averages for women, men, and the study population as a whole. Stays in hospital dominate the picture in both frequency and probability. Only 16 per cent of the elderly people in this study had not been admitted

134 Courses of formal service use to hospital in the last ten years of their lives. The number of stays in hospital during this period was twice as high as the number of stays in a nursing home during the entire lifetime. The average total time spent in hospital is very short, however, compared with the average time spent in a nursing home or home/centre for the aged. Table 7.1 Probability, total duration, and number of stays in the various institutions before death Women

Men

All

0.84

0.83

0.84

Average total time spent in hospital during the 10 years before death (mean and range)

30 days (0–212 days)

30 days (0–215 days)

30 days (0–215 days)

Average number of hospital stays per person during the 10 years before death (mean and range)

2.1 stays (0–10 stays)

2.3 stays (0–16 stays)

2.2 stays (0–16 stays)

0.79

0.58

0.73

Average total time spent in a nursing home before death (mean and range)

2.7 years (0–31.7 years)

1.4 years (0–16.0 years)

2.3 years (0–31.7 years)

Average number of stays per person (mean and range)

1.2 stays (0–10 stays)

0.9 stays (0–6 stays)

1.1 stays (0–10 stays)

0.20

0.15

0.18

Average time spent in AH/BES* before death (mean and range)

1.1 years (0–18.5 years)

0.5 years (0–7.8 years)

0.9 years (0–18.5 years)

(N)

(309)

(125)

(434)

Hospitals Probability of one or more hospital stays during the 10 years before death

Nursing homes Probability of one or more nursing home stays before death

Assisted living facilities Probability of a stay in AH/BES* before death

Note: *AH = Alders Hvile; BES = Bøkeskogen eldresenter.

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The gender differences in these institutional stays follow a complex pattern. There is no difference between women and men in total use of hospitals before death. On the other hand, we found clear gender differences in the use of institutions for the aged. The total time spent in a nursing home or an assisted living facility is about twice as long for women as for men. The probability of being admitted to a nursing home is also much higher for women. When it comes to an assisted living facility, the probability is about the same for men and women. Total use of the home-based services prior to death Table 7.2 shows that the probability of having had home help is about the same for men and women, but that the probability of having had home nursing was somewhat higher for women. The gender difference is not as great, however, when it comes to the duration of both these services. Use of home help and home nursing services can occur separately or in combination, consecutively or simultaneously: • • •

9 per cent of the study population used the home nursing services only; 29 per cent used the home help service only; and 39 per cent (43 per cent of women and 30 per cent of men) used a combination of the two services at one time or another.

In total, 77 per cent of the study population were in contact with one or both of the home-based services before death. Thus the probability of Table 7.2 Probability and total duration of use of the home help and home nursing services before death Women

Men

All

0.69

0.66

0.68

5.0 years (0–22.5 years)

3.8 years (0–26.8 years)

4.6 years (0–26.8 years)

0.51

0.42

0.48

Average total duration of home nursing (mean and range)

0.7 years (0–7.3 years)

0.4 years (0–5.9 years)

0.6 years (0–7.3 years)

(N)

(309)

(125)

(434)

Home help service Probability of having had home help Average total duration of home help (mean and range) Home nursing Probability of having had home nursing

136 Courses of formal service use coming into contact with the home-based services was about the same as the probability of being admitted to an institution. The total use of institutions and home-based services prior to death for the 135 persons who were 80 years of age at the beginning of the study was also examined. The results differ only slightly in Tables 7.1 and 7.2. The 80-year-olds were admitted to hospital more often, and usually stayed longer in hospital than did the total study population. The men in this group spent less time in the nursing home and in the old people’s home relative to the study population as a whole. The 80-year-old men also had a shorter period of home nursing than the women did, but the duration of home help was about the same for both women and men in this sub-group. The difference in the use of the hospital services may be the result of a period effect. Because the 80-year-olds were the youngest of the elderly at the beginning of the study period, they were able to benefit from such tremendous advances in medical treatment as cataract surgery and hip replacements. The rest of the population were born too early to experience many of these advances. Differences in use of nursing homes and assisted living facilities may also result from a period effect. At any rate, greater emphasis on care in the home has been a declared objective in Larvik in recent years, as in all other Norwegian municipalities – and elsewhere in Europe and North America. Discussion Given the structure, volume, and mode of working of the total service system in Larvik during the study period, the degree and nature of services are relatively consistent. Towards the end of life, the probability of coming into contact with the health service was high – highest for admission to hospital. Hospitalizations represented brief episodes, however: for some of the elderly people, only the last days or hours of life. Nursing homes and institutions for the aged constitute the strongest category, with their combination of high probability of contact and long duration of use. I know of no data on the use of services over a lifetime which include both institutions and home-based services. Some estimates are available, however, for hospitals and nursing homes. The best study of the probability of hospital admission is by Kemper and Murtaugh (1991), who retrospectively analysed figures for persons who died in the US in the mid1980s. The results indicated that, for persons dying between the ages of 85 and 94, the probability of becoming resident in a nursing home prior to death was 60 per cent (50 per cent for men and 65 per cent for women). For persons living to the age of 95 or older, it was 71 per cent (52 per cent for men and 77 per cent for women). Analysing other US data, Liang et al. (1996) found that persons who reached the age of 80 or more spent an average of 22 days in hospital and 2.7 years in a nursing home in the course of their lives.

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The figures presented in these publications – gender differences and overall probability and duration of institutional confinement – coincide with findings from the Larvik study. For nursing homes, the coverage is approximately the same in the US and Norway, but the access to homebased services is much lower in the US (Van Nostrand et al. 1993). Even so, we may be facing processes of a relatively general nature in comparable populations, even if there are differences in the way that need for help is handled when the service systems vary in structure, organization, and method of financing. What factors might explain the variations in the total use of institutional and home-based services prior to death? Based on earlier research, I assume that health and functional impairment are crucial factors, of course, but informal caregiving resources may also be a factor. Such resources can protect against institutionalization, but may also tend to increase the demand for formal services (Lingsom 1997). Men and women in the Larvik study differed in their frailty and in their family resources. The women lived longer than the men did, but suffered more comprehensive and long-lasting functional disability (see Chapter 6). This gender difference may at least partially explain systematic gender differences in the number and duration of utilizations of formal caregiving services. More men than women have a spouse. Perhaps it was the elderly wives who helped keep the men in the study population from entering nursing homes and from utilizing home nursing services? I shall return to this issue, and to other questions that arose from these data, in the last section of this chapter. Let us first take a closer look at the innumerable episodes and movements concealed behind the figures in Tables 7.1 and 7.2: the dynamics of the use of services.

The dynamics of the use of services To this point our analysis of the total duration of use of services comprises the sum of all the user episodes that each individual experienced within each of the different services. Although some of our elderly people experienced no such episodes, many others experienced several – hospital or nursing home stays, for example. Between these visits, the old persons may have lived at home, with or without home help or home nursing. The figures in Tables 7.1 and 7.2 for total duration of each form of service use conceal many varying transitions. In this section I take a closer look at these transitions by first analysing movements between home and institution, then studying patient flows in hospitals and nursing homes. Transitions between home and institutions – and between institutions In this section, the unit of analysis is episodes of user states. As in the analysis of the relationship between loss of ADL function and illness at

138 Courses of formal service use the end of Chapter 5, the idea is that individuals ‘contribute’ an episode each time they becomes users or each time they are in a user state. In order to simplify the analysis, I do not distinguish between different user states at home. Instead I have concentrated on the transitions between the following states: • • • • •

home hospital nursing home assisted living facility death

What is the main pattern of the transitions between these states? The primary objective is not to present exact figures and calculations from Larvik. The movements that a population could make are of greater interest, it seems, and the study population from Larvik can be used as a good example of this perspective. Figure 7.1 shows the movements of the population in graphic form. The thickness of the arrows symbolizes the frequency of a transition. The sum of the number of transitions is shown beside each arrow.

66 3

Assisted living facility

Own home 14

40

10

Hospital

28 5

156

98

146 288

6 27

4

17 21

464

666

Death

54

Nursing home

Figure 7.1 Transitions for members of the study population between home, different states of institutional use, and death.

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In the figure, Hospital refers to all types of hospital admissions: to the local hospital in Larvik and to the central and regional hospitals. Nursing home includes nursing home stays in Larvik as well as rare stays in other nursing homes, primarily in neighbouring municipalities. The sum of the number of stays in an institution before death is 1,456: 3.4 per person in the study population. In addition there are 623 episodes of persons living at home between the first and last stay in an institution and 186 returns of nursing home and assisted living facility residents to the same institution after a temporary stay in hospital. Taken as a whole, we have, from the beginning to the end of an institutional career, an average of five movements among institutions or between an institution and an assisted living facility. Like Table 7.1, Figure 7.1 shows that the most frequently occurring element in the institutional career of the Larvik group is hospitalization. As we have seen, the total time spent in hospital is short, which means that it could easily have been obscured had the presentation focused on duration. With a dynamic perspective, however, the role of the hospital is seen in a different light. The hospital is not only the health service with which the old people have most frequent contact. Through the hospital, the individual old person has the most frequent contact with all the other health service institutions: home help, home nursing services, nursing homes, and assisted living facilities. For the 910 hospital episodes, patients in 73 per cent of the cases were admitted from their homes, 16 per cent from nursing homes, and 11 per cent from an assisted living facility. In other words, persons living in institutions for the aged account for somewhat over a quarter of the hospital admissions recorded in this study. This is a surprisingly high figure. To be able to analyse these – and other – hospital episodes in greater detail, admissions and discharges must be linked, in a consideration of the type of patient flows associated with the various hospital episodes. Patient flows in hospital Admissions to hospital from home When the old person was admitted to hospital from home, the probability of returning home again was 69 per cent, of being transferred to a nursing home was 21 per cent, and of dying was 10 per cent. Heart disease was the most common diagnosis among those who were admitted to hospital from home, and were discharged home again or died at hospital; injury (mostly hip fracture) was the most frequent among those transferred from hospital to nursing home.

140 Courses of formal service use Admissions to hospital from an assisted living facility Figure 7.1 shows that 98 patients were admitted to hospital from an assisted living facility. Most of these patients required only a short period in hospital because of an acute, serious disease before they could return to the assisted living facility. However, one out of five became so frail that he or she was transferred to a nursing home for a shorter or longer period; one out of four died in hospital. The most common diagnoses for those admitted to hospital from an assisted living facility are much the same as for those admitted from their homes. Admissions to hospital from nursing home Most of the elderly people who were admitted to hospital from a nursing home returned to their nursing home; only a small fraction died in hospital. Injury was the dominating cause of admission, and about 80 per cent of the injuries were hip fractures. Duration of hospital stays The duration of the hospital stay averages only six days when the old person is admitted to hospital from a nursing home or institution for the aged and returns there. Although this type of episode accounted for onequarter of all hospital admissions in our study, it represented only 8 per cent of all bed days. As expected, the longest stay in hospital is found for persons who were admitted from home or from an assisted living facility and ended up in a nursing home. These hospital stays lasted for four weeks, on average. These admissions lasted longer than others because the patient was required to remain in hospital until a place became available in a nursing home. This process took an average of 22 days from the time the application for a transfer was written until the patient was moved. If all this time is calculated as waiting time, it accounts for all 26 per cent of the total bed days for the study population. The hospital sector’s main functions when handling elderly patients Given this characterization of patient flows in hospital, the most important functions of the hospitals in relation to the study population during the study period can be described as follows: •

Short-term treatment of persons living at home: Examination and treatment of persons living at home who could return home again.

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•

•

•

•

Examination and treatment prior to further rehabilitation: Examination and treatment of patients from home or an assisted living facility who had a disease that required a relatively long period of rehabilitation and who, in this system, were transferred to an intermediate stay in a nursing home. Examination and treatment prior to further nursing and care: Examination and treatment from their home or from an assisted living facility for patients with a disease that led to a need for comprehensive nursing care and who, in this system, were transferred to a permanent stay in a nursing home. Examination and treatment of patients from an institution: Examination and treatment of patients from a nursing home or an assisted living facility who developed an acute disease that required temporary hospitalization. Terminal care: Examination and possible treatment of patients who died in hospital.

Table 7.3 shows that, given the way in which this system of services works, the function of the hospital as a place for short-term patients is the most important in quantitative terms, measured both as number of hospitalizations and as share of consumption (bed days). Dealing with patients from a long-term care institution was another frequent function, as was the acute treatment of persons who later became rehabilitation or nursing home cases. There is a marked difference, however, between the share of total hospitalization time consumed by rehabilitation and the nursing of patients on the one hand, and patients coming to hospital from a long-term care institution, on the other. Table 7.3 The function of the hospital in relation to the study population: proportion of episodes and share of total hospitalization time consumption during the last ten years before death (%) Share of episodes Short-term treatment Examination and treatment before further rehabilitation and care Examination and treatment of LTC patients Terminal care Total (N)

Share of hospitalization time consumption

51

46

17

34

21 11

8 11

100

99*

(910)

(910)

Note: *Because of rounding, percentages do not always add up to 100.

142 Courses of formal service use Five diagnoses dominated the hospitalizations: • • • • •

injuries: 20 per cent cardiovascular diseases: 13 per cent cancer: 10 per cent gastrointestinal diseases: 10 per cent ophthalmic diseases: 7 per cent

Discussion In the sections above it has been shown that hospital episodes constitute part of continuous patient flows in and out of hospital. The analysis demonstrates several important points of principle. First, it demonstrates the central function that the hospital plays in its service to old people during their last years of life. Not only is the hospital used frequently; it is also clearly the largest ‘junction’ in the consumer career. From here the roads are many and new, and no other service has such potentially broad contact with all others. This, in turn, means that what happens in the interaction – or lack of interaction – among other services in connection with a hospital stay must profoundly affect the way the whole system works. Second, the analysis described above shows that the hospital performs many and complex functions for elderly persons. Admission to hospital may be a part of many different careers: short-term treatment of acute disease among persons living at home, preliminary treatment of disease where there is need of rehabilitation, treatment prior to long-term nursing and care, acute treatment of residents in institutions for the aged, and terminal care. It has been known for many years that old people can be a problem for the capacity of the hospital system and patient flow because they occupy hospital beds while waiting to be accepted by another service (bedblocking). In Larvik, coverage in a long-term care institution was good during most of the study period, and it took, on average, only three weeks from application to admission. Even so, total waiting time accounts for a substantial share of the total duration of hospital stays. Patient flows in the nursing home Table 7.1 (see p. 134) also shows that the study population had many contacts with a nursing home prior to death. The nursing home in Larvik played a surprisingly dynamic role in the institutional career of the study population; the table shows a large number of transitions, both between the nursing home and the elderly person’s home and between the nursing home and the hospital. Direct transfers to and from an assisted living facility occurred less often. Figure 7.1 (see p. 138) illustrates that the

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nursing home occupied quite another position in the institutional career than the hospital did: its outcomes are – naturally enough – dominated by death. The role of the nursing home in the institutional careers of the study population can be illustrated in the same way as used for the hospital, by constructing patient flows. Admissions to a nursing home from an elderly person’s home The most common road to the nursing home led from an assisted living facility. Yet, as many as 39 per cent of all patients coming from their home returned home. In these cases the usual purpose of the stay in the nursing home was to give the primary caregiver some relief; in other cases the purpose was rehabilitation and treatment. The medical problems of this specific flow of patients consisted of a broad range of chronic illnesses, without any one of them dominating the picture. Admission to a nursing home from hospital A third of all nursing home episodes represent transfers from hospital, and 34 per cent of these patients returned home after a rehabilitation period lasting, on average, 58 days. They comprise the group referred to earlier as the hospital’s rehabilitation patients. A few of them were transferred from the hospital to an assisted living facility after they had completed rehabilitation; a few were readmitted to hospital, where they died. The other large group (60 per cent) admitted from the hospital are the patients who went from hospital to nursing home and remained there until they died. Admission to a nursing home from an assisted living facility Of all the nursing home episodes, 5 per cent were for patients admitted directly from an assisted living facility, and most of them remained in the nursing home until death. These are people who, in the course of their stay in the assisted living facility, began to require so much nursing care that the institutions were no longer able to provide for them. They suffered from chronic diseases, particularly dementia or stroke. Some were admitted indirectly to the nursing home via the hospital, usually because of a fractured hip that required more comprehensive care. The nursing home sector’s main functions The two most important functions of the nursing home in relation to the study population are simply permanent care and temporary care (rehabilitation and respite). Even though, in sum, the temporary stays accounted

144 Courses of formal service use Table 7.4 Main medical reasons for need of care during nursing home episodes (%) Temporary stay Serious dementia Multiple disorders Injuries Stroke Cancer Heart failure Osteoarthritis Other conditions Total (N)

Permanent stay

All

10 11 15 7 4 7 7 39

20 18 9 11 6 4 4 28

16 15 12 10 5 5 5 32

100

100

100

(188)

(276)

(464)

for one-third of all nursing home episodes, they do not account for more than 3 per cent of the total duration of nursing home stays. From a resource perspective, the paramount function of the nursing home in the system of health services in Larvik – as everywhere else – was long-term, permanent care. The most common medical problems during the two kinds of nursing home episodes are distributed as shown in Table 7.4. The dynamic role of the nursing home for the study population during the last years of life is a typical period effect. The nursing home that was planned in the 1950s and opened in 1960 (see Chapter 2) was intended originally to be a place where people would live permanently. Use of the nursing home for temporary accommodation did not become a common occurrence until the 1970s. The admission rate (the number of admissions per year as a percentage of the number of possible places) increased from around 30 per cent per year before 1975 to more than 80 per cent per year in 1980. Since 1990, the percentage has remained steady at nearly 100 per cent, for there are currently as many admissions per year as there are places available. This situation is not unique to Larvik. There are certainly variations among municipalities, but the trend is typical for Norway’s nursing home sector (Romøren 1992). In a broader perspective, this use of nursing homes is uncommon in countries outside Scandinavia. Corresponding admission rates are found only in the US. In Canada, the Netherlands, and Australia, for instance, the nursing home is used mainly as a permanent place for the old and the chronically ill. Long-term treatment and rehabilitation normally takes place in the hospital sector, either in a geriatric department or in a department for the chronically ill (Havens et al. 1996).

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Individual careers •

• •

What picture is presented by the transitions between home and institutions and among different institutions, when the individual old person is tracked episode by episode, from the start of the institutional career until death? What institutional career is the most common in this study population? How many of our elderly people had no institutional career at all? Who were these elderly people? Is there any connection between different institutional careers and ADL careers, or between institutional career on the one hand and gender, age, family care, and use of home-based formal services on the other?

These questions are discussed in this section. Individual careers or trajectories can be classified on the basis of different criteria (Pavalko 1997). Below, the type and number of the different episodes are most important. I distinguish between four main careers: 1 2 3 4

No institutional careers: Careers in which the old person had never stayed in an institution (in the case of hospitals, ‘never’ was limited to the last ten years). Hospital careers: Careers in which the old person had one or more hospital episodes in the past ten years, but had never stayed in a nursing home or other long-term care institution. Nursing home careers: Careers in which the old person had one or more nursing home episodes. Assisted living facility careers: Careers where the old person stayed in a home/centre for the aged, but never in a nursing home.

Thus the distinction based on the type of institution, if any, was primary in the old person’s career – because people with different career patterns have crossed different thresholds. The usual reason for hospitalization is an illness that, according to current professional standards and at the decision of a physician, requires hospital treatment. Admission to a nursing home usually occurs because the old person requires supervision and nursing due to a chronic, serious, functional impairment, or an incurable disease or because long-term rehabilitation is necessary in order for the elderly person to regain health after an acute illness. The basic norms and decision-making criteria are more diffuse, and the decisions tend more to be the subject of negotiations among several partners: the elderly person, the family, and the health services. An application for a place in an assisted living facility is usually founded on less serious functional impairment or on the need to live in a communal

146 Courses of formal service use household. The old person’s wishes are usually the primary reason for this type of institutionalization. During the study period, however, the stay in the home or centre could last only as long as the old person’s need for care did not overtax the resources, competence, and objectives of this type of service. Individual careers – classification and distribution Each main group of careers includes many variants. The distribution of the number of stays, types of stay, and the interval between stays is large, as clearly illustrated by the following three cases. Mrs Nygaard was admitted to hospital seven times in a steady rhythm for hip fracture and eye disease during the years before her temporary admission to a nursing home for rehabilitation after a hip fracture. The month after this temporary stay she became a permanent resident of a nursing home for a short time before she died (nursing home career).

Mr Amundrød’s career was simpler than that of Mrs Nygaard. In the year before he died he had one brief period in hospital for a stomach complaint before dying of cardiac infarction six hours after his second hospital admission. These were his only institutional stays during his elder years (hospital career).

Mrs Hanevold shows a typical nursing home career without temporary breaks. Nine years before embarking on a permanent, five-year stay in a nursing home, she underwent a minor operation in hospital. Six months later she developed serious dementia, which was the reason for admission to the nursing home. I have chosen to differentiate the main division slightly, because the hospital careers and nursing careers – as defined above – can both be divided into two sub-groups: •

The hospital episodes are grouped into careers with only one stay and careers with several stays. In the case of the former, the patient is

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Table 7.5 Six institutional careers (%) Type of career

Women

Men

All

No institutional career

0

6

2

Hospital careers One stay More than one stay

15 6 9

31 9 22

20 7 13

Nursing home careers Nursing home careers with one permanent stay only

79 48

58 42

72 46

Nursing home careers with temporary stays as well (commuter careers)

31

16

26

7

5

6

(309)

(125)

(434)

Assisted living facility career (one permanent, long-term stay) (N)

•

admitted to hospital and dies there, or sometimes dies at home after the hospital stay. If the hospital career includes two or more hospitalizations, the patient dies in hospital on the last occasion (cf. Mr Amundrød) or at home after the last of two or more hospital episodes. The nursing home career can consist either of one permanent stay (cf. Mrs Hanevold) or of one or more temporary stays (cf. Mrs Nygaard). A permanent stay implies continual residence of long or short duration in a long-term institution – either in a nursing home only, or in combination with a stay in an assisted living facility that occurred immediately before. A nursing home career with temporary residence in such an institution usually ended – as in the case of Mrs Nygaard – in permanent residence in the nursing home. Sometimes, however, the old person died at home after a stay in hospital, or in hospital after first living at home for awhile after the period in the nursing home.

Table 7.5 shows how the six variants of the institutional careers are distributed in the study population. Men are clearly over-represented in the group with no institutional career and in the group with hospital careers. This gender difference can be attributed almost entirely to careers with several hospitalizations. The situation is exactly the opposite for nursing home careers; we found a larger proportion of these careers, particularly temporary stays, among women. Why does alternation between home and nursing home appear to be a female phenomenon, and the corresponding alternation between home and

148 Courses of formal service use hospital primarily a male phenomenon? What factors explain these and other differences? No institutional career Table 7.5 shows the percentage of people in six different institutional careers. In real numbers, seven individuals in the study population, all of them men, were without an institutional career. Two of them had been admitted to hospital for an acute, incidental illness 10 to 20 years before death; the other five had never been to a hospital or any other health institution during their lifetimes. Four had used the home help or the home nursing service. All seven died quite suddenly at home, most of them without warning. One suffered from serious dementia for a time before he died; another two had other less serious health problems. Functionally, however, six of the seven belonged to the category fairly healthy. Mr Håkestad had a minor operation 13 years before he died, but had no other health problems. When he became a widower, his daughter started to help him by cleaning the house and preparing his main meals. One of Mr Håkestad’s sisters and a daughter-in-law gave the daughter some relief from time to time. Mr Håkestad liked to manage for himself and did not want any ‘outsiders’ in his house, so he did not apply for home help. He died suddenly at home without any preceding illness.

Hospital careers There were others with hospital careers who died at home – 24 persons in all (6 per cent of the study population); 22 died suddenly, and only five after a short period of nursing. Rather more women than men with hospital careers were only hospitalized once. A larger percentage of men than women were admitted three times or more. The men’s hospital careers show a different rhythm than the women’s: there was usually a shorter interval between each hospital admission. Miss Gjertrud Skalleberg was a woman who lived with her unmarried sister, Miss Margrethe Skalleberg. Margrethe suffered from leg ulcers, but Gjertrud helped her, with strong support from the home nursing service. A tenant was responsible for doing the gardening and shovelling snow and the elderly women’s brother, their perma-

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nent chauffeur, contacted them often. Margrethe would not have a home helper. Miss Gjertrud Skalleberg was self-reliant until, at the age of 89, she suddenly became short of breath, weak, bedridden, and muddled. After two days she was admitted to hospital, developed symptoms of stroke and died nine days later. Functionally she belonged to the fairly healthy category.

Mr Hem was a childless widower who looked upon his nephew, Sverre, as his son. Sverre said that they had a good relationship – that his uncle was ‘a good chap, wanted to be independent, and never complained’. He had a home helper; in addition the nephew went to town with him about twice a week to shop. Mr Hem had developed slight diabetes, had impaired vision, and sometimes fell down. He was also incontinent at times, but dealt with this problem himself. A few months before he died he was admitted to hospital for a cancer operation. The operation was successful and he felt well. Later, however, he became listless, had steadily more back pain, lost his appetite, and lost weight. His nephew looked after him. Three days after the old man became bedridden, he was admitted to hospital again. He died there two weeks later. He also belonged to the category fairly healthy.

Nursing home careers I have defined two groups of nursing home careers; the first comprises cases of permanent residence in a nursing home, the second comprises cases of temporary residence – the commuters. Mrs Reinemo is a typical example of a person with several nursing home stays. Her career was quite complex and can be described as follows: her home (with home help, plus a short period of home nursing) → nursing home (three weeks, rehabilitation after a fall injury at home) → hospital (back injury, three weeks) → her home (one-and-a-half years) →

150 Courses of formal service use hospital (two months, hip replacement) → nursing home (two years, with two stays in hospital: reoperation of the hip prosthesis, hip fracture) → death.

In Mrs Allum’s case, the course of the formal caregiving and of functional impairment were as follows. Between 70 and 80 years of age she developed osteoarthritis and diabetes, and often had a urinary infection. At the age of 87, because of the osteoarthritis, she required help with one or two ADL functions (ADL-1) for four years. Her daughter, Ingrid, helped her. The two injuries occurred about halfway through this period. When she had a hip replacement at the age of 91, she became incontinent and temporarily disorientated and was permanently in need of help with four ADL functions (ADL-2). She was therefore transferred from the hospital to the nursing home. This worsened ADL status lasted for one-and-a-half-years; she then became weaker and bedridden and needed help with all ADL functions (ADL-3). She was admitted to hospital for investigation, and was shown to have a disease from which she died a few weeks later. Her ADL career was of the severely dependent type.

Mrs Vestrum had only one stay in a nursing home, lasting for fourand-a-half years. Her sister-in-law, Dagmar, was her primary caregiver. She also had home help. Gradually, however, because of cognitive impairment, she found it difficult to manage. In the first place, she received help with her personal hygiene (ADL-1). The year after, when she was 86, she was found lying on the floor at home after a fall; the doctor suspected a fractured vertebra, and she was admitted to hospital and later transferred to the nursing home. After her fall she needed help with four ADL functions (ADL-2). By the time she had been in the nursing home for one-and-a-half years she had developed serious dementia. Two years later she needed help with all ADL functions (ADL-3), a state that lasted for a year. Then she fell out of bed and broke her hip, was operated on in hospital, and died in the nursing home nine days later. Functionally she belongs to the group serious dementia.

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Mrs Reinemo was hospitalized four times, Mrs Vestrum twice. These cases are fairly representative of the two groups with nursing home careers. Mrs Reinemo is also typical in terms of number of nursing home stays. The same applies to the final course of her institutional career: three years after her first stay in the nursing home, she returned there for good. For persons with this type of career, the average number of nursing home stays was 2.4, with a range from one to ten, and 86 per cent finally returned to the nursing home to remain there until they died. For those with temporary stays in a nursing home, the average duration of the nursing home career was 2.3–4.9 years for those who remained permanently. For persons with commuting nursing home careers, we found only a small gender difference in total duration of stay (2–4 years for women; 2.1 years for men). Among those who were admitted permanently, the nursing home career was much longer for women (5.5 years) than for men (3.3 years). Most of the people who were admitted to a nursing home temporarily had only two stays. All in all, 73 per cent of the temporary admissions were one-time events. The interval between stays, if there was more than one, was shorter for the men. In this study population, the average interval between each stay in the nursing home was six months to one year. Assisted living facility It was pointed out above that the residents of the assisted living facilities Alders Hvile and Bøkeskogen eldresenter often continued their career in a nursing home, having either been transferred there directly, or after a stay in Larvik hospital. Some others went to the assisted living facility after a stay in a nursing home. Only 25 had a ‘pure’ assisted living facility career; these were persons who never stayed in a nursing home, either before or after their stay in the assisted living facility. Mrs Bentsrød was nearly 80 years old and a widow when she started to dislike living alone in winter. She was slightly forgetful and had periods of back pain, but was otherwise active and independent. Her daughter, Gyda, her primary caregiver, visited her every week, but Mrs Bentsrød also had frequent contact with her other children. Mrs Bentsrød decided to apply for a place in Alders Hvile, where she knew most of the pensioners. She soon felt at home there, but often went to visit her children. Gyda looked after her clothes and did some shopping for her – ‘so everything was in order’, as Gyda said. When Mrs Bentsrød was in town one day she suffered a fracture that required an operation. In hospital she became severely confused, but the confusion passed, and she was discharged to Alders

152 Courses of formal service use Hvile. During the next three years she became increasingly troubled by osteoarthritis in her knees; and for the last six months suffered from anxiety. She did not need any more help than before, however. One day she was found dead in bed. She belonged to the ADL group fairly healthy.

On average, the assisted living facility career lasted 4.7 years. For persons with this type of career, the number of hospitalizations over the last ten years of their lives averaged 2.4 – somewhat higher than for persons with a nursing home career (2.1). Factors associated with different institutional careers What factors help to explain the variation in the institutional careers of the members of the study population? Could the variation be caused by differences in informal caregiving resources? Is the institutional career connected with the use of home-based services? Is the primary cause the pattern of functional impairment, or do some of these factors work simultaneously? In the following sections I examine the ways in which these factors influence the different types of institutional careers. The presentation is based on Table A.9 in Appendix A, showing how gender, age, ADL career, use of formal home care, living alone, and characteristics of NOP are distributed among the institutional career types. Hospital careers The majority of people with hospital careers belong to the fairly healthy category. Men are over-represented in the hospital careers group. The hospital careers group had only limited need of nursing for reasons of health. However, the table also shows that a larger percentage of this group had a spouse as a primary caregiver; that a smaller percentage than the average, therefore, lived alone; and that they died younger than persons in other groups. Table A.9 shows an association between hospital career and care by the spouse. It is probable that a larger proportion of those with a hospital career had a spouse as primary caregiver for the very reason that they died younger than the average for the study population, so more of their spouses were still alive to care for them. This part of the study population was also healthier than the other groups before death. The main cause of the hospital career, then, can probably be attributed less to a need for care and nursing than to the fact that the spouse is primary caregiver. No institutional career or hospital career in the Larvik study corresponds to the category of low consumers in North American studies of old

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people’s use of health services towards the end of life (see, for example, Roos et al. 1984). In contrast to studies from abroad, Larvik study data are also available for functional ability, use of home-based services, type of household, and caregiving resources. The main reason for the low institutional use was not that elderly persons were large consumers of home-based services or that they received substantial help from informal caregivers. Rather, in the Larvik study, low consumers of health services enjoyed relatively good health. Other institutional careers Women are over-represented in the nursing home career with commuting. In this career, there is a smaller than average share of fairly healthy persons, but in other respects the distribution of the ADL careers is about average. As regards household and primary caregiver, this group is no different from the rest. As expected, a large number of this group received both home help and home nursing. Extensive use of home-based services is usually a criterion for being able to return home after a hospital stay. These services also – in combination with relief arrangements for caregivers – keep people out of hospital longer (Romøren 1985). Nursing home careers with permanent residence are typical of persons with the degrees of functional impairment labelled serious dementia or severely dependent. For all other variables, this group lies approximately at the average, meaning that the main difference between those who lived temporarily in a nursing home and those who were admitted permanently is the extent and type of loss of function. Except for use of home-based services, the two groups were much the same in all other respects. Persons with assisted living facility careers are different from those with nursing home careers. A majority of elderly people in the first group was fairly healthy right up to the time they died. Many of them lived alone before institutionalization, and, for more than half, the primary caregiver was a son. Thus, the persons who applied for a place in Alders Hvile or Bøkeskogen eldresenter were relatively independent people who may have felt a bit lonely. Although we have no data to support this contention, it may also be that elderly people are more concerned with being a burden to their sons than to their daughters and did not want to burden their sons. Alternatively, they may not have been sure that their sons could give them the care they needed. I have pointed out before that, while men tend to be commuters between home and hospital towards the end of their lives, it is more common for women to alternate between home and nursing home. We can now see that the main reason for this gender deviation is a difference in health status, although it is probably also important that a large share of the men had a spouse to support them before, during, and after their hospital stays.

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The probability and duration of different kinds of institutionalization After having considered the dynamics of the use of the health services and how it leads to different health service careers, we shall now return to the first analysis in this chapter: the total use of each of the services prior to death. Taking another look at Table 7.1 (see p. 134), the following question is asked: •

What factors contribute to an explanation of variations in the probability of being admitted to one or more of the institutions before death, and to variations in the duration of the stay?

The probability of using a service is the most common measure applied in studies of old people’s use of the health services system. The duration of the use of services in old age has not been studied to the same extent. However, as mentioned at the beginning of this chapter, this aspect is equally important in terms of health policy and supply of resources. For example, information on the factors that help to explain variations in the duration of a hospital stay or nursing home stay is essential for understanding the total demand for these services. The few studies that have been published on the use of institutions have been limited by their narrow focus on socio-demographic explanatory variables – age, gender, marital status, and socio-economic status. As far as I know, no population-based study has yet been published on the duration of institutionalization towards the end of life, which also includes data on disability and resources of informal care and can indicate the relative importance of these factors. In the following pages, both the probability of institutionalization and the duration of the stay is considered, using the same design as at the beginning of the chapter: for each type of institution separately. However I limit the analysis here to hospital and nursing home use. The sociodemographic variables include: • • • •

gender age at death marital status (ever married/never married) socio-economic status (SES 1–3, see Chapter 4)

As a measure of disability, the typology from Chapter 5 is used: • • • •

serious dementia severely dependent frail fairly healthy

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Informal caregiving resources are characterized by: • •

whether or not the old person lived alone; and who was the primary caregiver (daughter, son, spouse, or ‘other’ [i.e. sister or brother, niece or nephew, other relative, or non-relative]).

The multivariate analyses presented below were conducted by means of logistic regression on the probability and Cox regression on the duration. The reader can find the details in Appendix A, Tables A.10–13. Hospital In this material, the probability of being admitted to hospital is influenced only by course of functional impairment and by age at death. None of the following variables – the old person’s age, socio-economic status, civil status, whether he or she lived alone, or who was the primary caregiver – was significantly related to the probability of one or more hospital admissions. In the analysis shown in Table A.10, the results have also been corrected for whether or not the old person had been in a nursing home. In some cases, treatment in a nursing home may have substituted for treatment in hospital. However, a stay in a nursing home does not in itself seem to affect the probability of being admitted to hospital. Hospital admission, disability, and age The effect of functional impairments is that the probability of hospitalization is greatest for the categories frail and fairly healthy, and then for the category severely dependent – all three categories seen in relation to serious dementia (the reference group). Furthermore, the probability of hospitalization is significantly higher for the age group 85–90, relative to both 80–85 and 90+. Thus this probability is ‘dome shaped’, with 85–90 years as the highest point. There are several possible explanations for these results. It appears that persons with serious dementia are not admitted to hospital towards the end of their lives as often as other groups are. Perhaps such persons have fewer serious illnesses than do persons in the other groups; perhaps such illnesses are not discovered as easily among persons in this group; perhaps doctors don’t give priority to hospital treatment in this group; or perhaps a larger share of this group reside in institutions offering services that can substitute for hospital treatment. There seems to be no logical reason why persons with serious dementia would have fewer serious illnesses than other old people do. It is reasonable to suppose, however, that such illnesses are sometimes not discovered or that treatment of these illnesses does not receive the same priority among persons with dementia as for people in the other groups. It is my clinical

156 Courses of formal service use experience that cancer is sometimes not discovered in this group of patients or is discovered much too late for treatment to be helpful. It is not surprising to find that the older the elderly person, the less likely he or she is to be admitted to hospital. The reasons may follow the same pattern as for persons with serious dementia: illnesses may remain undiscovered in persons over the age of 90 or such persons may not be as readily admitted to hospital for acute treatment. There may also be a selective effect: persons who reach the age of 90 years or more may have more robust health, in terms of acute, serious illnesses, than do those who die younger. Finally, it is my experience that some of the very oldest persons refuse to be admitted to hospital if they become seriously ill. Factors associated with the duration of hospital stays Table A.11 demonstrates the relationship between duration of hospital admissions on the one hand, and socio-demographic variables, ADL career, and caregiving situation on the other. For the first time in this study we find an effect of socio-economic status: persons with the highest socioeconomic status who were admitted to hospital spent a significantly longer time in the institution than did elderly people in the other groups. If we look at the types of ADL careers experienced by the old people, we also find a distinction between persons with serious dementia and persons in the other three groups. The total duration of hospital stays was longer for the fairly healthy, the frail, and the severely dependent than for persons with serious dementia. Nursing home residents also spent a significantly longer time in hospital than others did. The old person’s gender, civil status, whether he or she lived alone or not, or relationship with the primary caregiver did not, however, seem to affect the duration of hospital stay(s). How can these results be explained? In retrospect, we find that, in general, having been a nursing home resident does not ‘save’ a person days in hospital. Saved days and short hospital stays while resident in the nursing home are not enough to compensate for the time spent in hospital before admission to the nursing home. People with serious dementia may spend less time in hospital relative to persons in the other ADL careers simply because they have fewer hospitalizations (1.6 on average, as opposed to 2.1 and 2.4 for the others). The duration per stay is about the same, however. I assume that total duration of hospital stays is shorter for those with serious dementia than for the other groups because people with dementia receive lower priority in diagnosis and treatment. Why do persons belonging to SES-1 (engineers, health personnel, teachers, vicars, and the cream of business and industry or their spouses), when admitted to hospital, spend a longer time there than do persons in other socio-economic groups? Do they negotiate for a longer stay? Are they admitted more often? The data are not detailed enough to tell us if

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there is any medical difference between SES-1 and the other two groups. What has been established, however, is that the members of this group are admitted to hospital more often than others (2.7 times versus 2.1), but that each separate stay does not last longer. Thus, it is primarily the threshold for admission to hospital that is lower for persons in SES-1. The threshold for discharge is the same as for others. How can we explain the importance of age? Innumerable studies have shown that the number of bed days in hospital increases steadily for age groups over 60, but stops increasing or even decreases among the very oldest (see, for example, Paulsen et al. 1999: 32). In the Larvik study a telling explanation is the dramatic drop in the number of admissions towards the end of life, the older the person is at time of death. For persons dying between 80 and 85, the average number of admissions to hospital during the last ten years of life was 2.6, as opposed to 2.3 for persons dying between the ages of 85 and 90 and 1.8 for the very oldest group. The duration of the separate stays was the same for all age groups. I have suggested above that different professional attitudes towards acute, serious illness among the very oldest group, a possible selection effect, and the attitudes of the old people themselves, may all help to explain the differences in the probability of admission to hospital with increasing age. This hypothesis is supported by the age-specific figures for the number of admissions. The explanation of the importance of age for the total duration of hospital stays can probably be found in similar arguments. Nursing home Turning to the use of the nursing home, Table A.2 in Appendix A shows that the type of functional career and the relationship with the primary caregiver both had a significant effect on the probability of entering a nursing home. The chance of ending up in a nursing home is considerably lower for the fairly healthy than for those with serious dementia. The probability is also low for the frail compared with the serious dementia group, but there is no significant difference between the groups severely dependent and serious dementia. All these results are as expected. One might wonder, however, why persons who ended their lives in a fairly healthy state were admitted to a nursing home in the first place. As we saw in Chapter 6, this group was not free from health problems. Mr Skogen is a good example. Although he belonged to the category fairly healthy, he had had a short stay in Larvik Nursing Home. In fact, 34 of the 128 fairly healthy members of the population (27 per cent) had been admitted to a nursing home – many for rehabilitation – and, as we shall see, most of the stays were of short duration. Gender, age at death, socio-economic status, marital status, and living status (alone or with others) had no significant effect on the probability of

158 Courses of formal service use being admitted to a nursing home. What did have an effect was EP’s primary caregiver. If the primary caregiver was the spouse, all else being equal, it was less likely that the old person would be admitted to hospital than if the primary caregiver was a daughter, a son, or someone else. Thus, I can now say with a large degree of certainty that husbands and wives helped to keep their partners out of nursing homes (see also Montgomery and Kosloski 1994). Separate analyses of women and men show no effect for gender: when the spouse is the primary caregiver, it is the content of the care rather than the duration that appears to keep EP out of a nursing home. Spouses more frequently give personal care than do any other primary caregivers. Duration of nursing home stays As shown in Table A.13, the factors of greatest importance for the variations in the total time spent in a nursing home are age, socio-economic status, and ADL career. None of the other variables – gender, marital status, type of household, or relationship of primary caregiver – seems to have an independent effect. As expected, a very old age at time of death leads to a longer stay, or stays, in the nursing home. As for disability career, frail and fairly healthy persons, as one might expect, spend a shorter time in a nursing home compared with persons in the categories severely dependent and serious dementia. Somewhat surprisingly – but just as we found for the duration of hospital stays – persons in SES-1 spend a longer time in a nursing home, compared with persons in socio-economic groups SES-2 and SES-3. It is not that people from SES-1 are admitted more often to nursing homes, so they must have a lower threshold for admission and/or a higher threshold for discharge. Discussion It is striking how differences in informal caregiving resources – as defined and investigated here – have only limited effect on the use of institutions. The analyses presented above do not imply that the caregiving resources were not important, but that type of functional impairment, age, and socioeconomic status were more important. Marital status has been considered as a socio-demographic variable in these analyses, but this variable also indirectly describes caregiving resources. The unmarried members of the population had two caregiving disadvantages: they had no children, and they lacked both a spouse and a spouse’s family as part of their potential network. However, this lack of potential caregiving resources appears to have no effect on the probability of being institutionalized. This is surprising and interesting, contrary to common sense, and contrary to what gerontologists have tended to say about the childless elderly.

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Age at death is, among other things, an indicator of ageing; therefore it can also be reckoned as a ‘need factor’, in line with functional impairment. In this perspective, the need factor is of marked importance in the analyses presented here, in complete agreement with the main result presented in the large bulk of research literature on the use of health services in old age (see Wan 1989; Wolinsky 1990; Rubenstein and Nasr 1996; Linden et al. 1997). Socio-economic status is an indirect measure of social resources. Even though informal caregiving resources have little effect on the use of institutions, other types of resources are important. Whether we are examining institutionalization in a hospital, nursing home, or assisted living facility, who you are is more important than who takes care of you, and members of SES-1 are more likely than other members of their cohorts to utilize these formal resources. Education is, of course, a resource possessed to a much greater extent by members of SES-1 than by others. Perhaps their education helped them (or their advocating children, likely to be SES-1s themselves) to express their needs, understand how the system of services could be used, communicate with health personnel, and more easily make their voices heard? Was it more difficult to say ‘No’ to the head of a school, a physician’s wife, or a prominent businessman in the town, than to a retired whaler, a sawmill employee, or the wife of one of these people? In normative terms, these figures clearly indicate an unequal distribution of public benefits. On the other hand, one cannot fail to be impressed by the ability of the welfare system to include the high and the low, the rich and the poor simultaneously. In the nursing home, the old alcoholics did not have the sunniest rooms or the best view, but they ended their lives in the same institution as the rest of the town’s inhabitants who needed care. Perhaps it is unrealistic to expect that social status should have no effect on the distribution of health system resources, for it seems to affect every other facet of our lives. Based on the above analysis, we can say that those with dementia and the very old lack the necessary resources to obtain access to hospitals. With the reservation that the picture may contain an element of the person’s own wishes, it is obvious that, for both these groups, the threshold for receiving hospital treatment is higher than for others. Whether this phenomenon reflects rational use of resources or an unfair distribution of welfare benefits depends on one’s point of view. Whatever the case, the results give food for thought. This analysis has provided a more detailed study of the knowledge presented in Chapter 6: the duration of in-home care and the length of institutional stay(s) are not necessarily related. Daughters provide in-home care longer than sons do, but the total time that parents spend in an institution is the same in both cases. In this chapter we have seen that, even if caregiving by the spouse is of shorter duration than is caregiving by sons or daughters, it does not lead to a longer nursing home stay.

160 Courses of formal service use It has been clearly shown, however, that the content of informal care may affect the use of institutions. I have interpreted this result to mean that old people who are able to receive support from their spouses are admitted to nursing homes less often than others because the caregiving provided by the spouse more often includes personal care. Also, as in the case of sons and daughters, the care provided by husbands is comparable to the care provided by wives. The results of the multivariate analysis show that gender differences, as reported at the beginning of this chapter (Table 7.1, p. 134), are an expression of other, underlying differences. Women live longer and suffer more disabilities than men do, which seems to be the principal explanation for the finding that women are more likely than men to be admitted to nursing homes and to spend longer there when first admitted. It is reasonable to assume that the same factors apply to gender differences in the use of home-based services (see Table 7.2, p. 135).

Conclusion In this study, the analysis of the use of the welfare services in old age focuses on courses or careers, on the probability of the old people being admitted to an institution, and on the duration of the stay(s). Yet the result is the same as in much other research: in the end it is the overall need – in the sense of age and functional impairment – that is most important. That is a fortunate statement to be able to make of any health care system. In this chapter, by focusing on the total course of the institutional caregiving career, I have established a perspective showing that the use of institutions is part of various processes, and that these processes follow different courses of development. A hospital stay or a nursing home stay is not an abstract unit of investigation, but an event that occurs within a larger course of events. These courses include different situations, and also differ in composition, rhythm, and duration. This assertion is more than an analytical issue; it has political implications, not the least of which is the old people’s use of the hospital. There is probably much to gain by developing better tools and a more carefully prepared practice for dealing with the actual process of which hospitalization is a part. This analysis has not only shown the complexity of this challenge, but also the potential gains – gains to the health system, to our overall social system, and to the individuals who are living the last years of their long lives.

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8

Looking back and summing up

The background for the Larvik study was a wish to understand ageing and care of the aged as a process and a course of development. The objective was to obtain a picture of this process in three areas during the last years of life: disability, family care, and use of health services. In this respect, the study has shown that the process of ageing follows different paths, or trajectories. The primary factors that drive the three types of trajectories and create the main characteristics of the various states, their duration, transitions, and sequence, are the changes that occur in the old person’s health and level of physical functioning. These changes, in their turn, create different courses of disability or ADL careers. The type of careers that elderly people follow is primarily determined by one of two possible courses: • •

developing chronic illness like dementia, arthritis, or disability after injury or stroke; or escaping chronic illness throughout most of their old age, then being stricken by an acute, mortal disease that brings life to an end while the person is still independent.

The courses of family care are more complex, partly because these careers last longer and partly because they are more changeable in content and in location of the caregiving (at home or in various institutions). As regards content, practical help and contact are the dominating elements of informal or family care. Personal care is a form of help that the primary caregiver seldom provides for any length of time – at least in this study population, which I have no reason to believe is atypical. The caregiving career usually consists of different phases that can be characterized as steps, and formal and informal care are closely interwoven, both ‘horizontally’ (simultaneously) and ‘vertically’ (consecutively). There are certain differences in the content and duration of care and in the consequences for the old people’s use of institutions for the aged, depending on the relationship between the elderly person and the primary caregiver. Even so, similarities are greater than differences, and this is

162 Looking back and summing up also the case across gender. When husbands or sons assume the role of a primary caregiver, they give contact, practical help, and personal care that are fully comparable to those of wives or daughters. In fact the main difference is that those who have a husband or wife as a primary caregiver have a somewhat reduced probability of entering a nursing home, compared to those who have a son or a daughter as their primary caregiver. The total duration of nursing home stays before death, however, is the same for all these groups. The course of the use of health services has a simple basic structure, at least when – as in this study – it is based on the use of institutions. Four different courses were observed, with one, the nursing home career, completely dominating the field. The likelihood of entering this career was high. Similarly, the probability of ending life without any form of institutional career was extremely small. Though the situation is affected both by socio-economic resources and family caregiving, it is variations in the need for help that essentially determine which course this career takes.

Men and women The effect of gender on the end of life in extremely old age is the most thorough, systematic, and significant of all factors explored in the Larvik study. The gender differences demonstrated in this study can be illustrated by a figure presenting a synopsis of the careers in the three different areas. Figure 8.1 symbolizes the end of the life course for men and women in the Larvik study. The figure represents average values for the duration of: • • • •

the different ADL limitations; total duration of stay in a nursing home or assisted living facility; use of home-based services; and family (informal) care – regardless of type – at home and in an institution.

The horizontal bands in the figure illustrate what can be referred to as ‘synthetic courses’. They are based on the group average for each state or stage in the use of services, and were not produced on the basis of all the individual careers collectively. I have emphasized many times throughout this book that by no means has every member of the study population experienced all types of ADL limitations, family care, or health services. However, this fact is not accounted for in the figure, which shows only the average duration of the various states with all the men and all the women considered as one group. The bands are constructed on the basis of the use of health services. The services are arranged consecutively in logical order. All the home-based services in the figure are placed before the institutional services, although

Looking back and summing up 163 80

81

82

83

84

85

86

Formal homecare 5.7 years

87

88

89

90 years

Institutional care 3.8 years Women L ns tio ita

lim e

m ho

lp he

g sin ur

AD

N

om

e

om

g in liv d te g sis sin As nur e

H

H

t’ en nd pe de ‘In

ty

li ci fa

Family care 5.0 + 3.8 years = 8.8 years Formal homecare 4.2 years

Institutional care 1.9 years Men L

AD

ns tio ita e y lim m lit ci fa g

d

sin

te

sis

ur

N

As

in

ho

liv

g

t’

en

lp

nd

he

pe

e

de

om

H

‘In

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Family care 3.4 + 1.9 years = 5.3 years

80

81

82

83

84

85

86

87

88

89

90 years

Figure 8.1 The last years of the life course.

this is not necessarily the case in reality. Also, use of the home nursing service is placed after use of the home help service, even though these services overlap for 43 per cent of the women and 30 per cent of the men. The figure does not include use of hospital services; 30 days would not account for more than a thin line from top to bottom of the band! The ADL limitations are ordered according to degree of seriousness. ADL-3 is placed nearest the end of life, and ADL-1 furthest away. It tends to look as though, in all the courses reflecting the use of services, each level of ADL impairment appears in sequence, which, in fact, is not the case. Given these precautions, the ‘bands’ illustrate several important points. Most conspicuous is that the band illustrating the course of service use is

164 Looking back and summing up much more compressed for the men than for the women. The men die younger but all their stages last for a shorter time. This situation has already been observed for each of the stages separately. Here the same phenomenon is seen for all stages collectively. If the goal is to reduce the time that old people are dependent on others, this study clearly says that this is a women’s issue – in a double sense. Far more women than men reach this stage of life, and when they do reach it, their need-for-help career is much more comprehensive and extended. Gender equality is far from being achieved in this area. As I see it, this is one of the most important and professionally challenging differences between men’s and women’s health.

The generalizable value of the Larvik study Given the main results described above, three questions arise: • • •

What is the course of health service utilization among younger old people – those under 80 years of age? To what degree are the results from Larvik representative of the rest of Norway? What about new cohorts of elderly?

Younger elderly Younger old people experience shorter periods of disability before death than the very oldest of the elderly do. This is not only popular knowledge; it has been confirmed empirically by Manton (1988), Guralnik (1991), and others. Thus there is certainly a larger proportion in the 70–80 group than in the 80+ group that end their lives as fairly healthy or frail. Fewer of the younger elderly will suffer from serious dementia or be severely dependent on help from others. I assume that the results of the disability analyses would show the same tendency, including the same gender differences, among the younger elderly as among the older elderly. The degree of seriousness and duration of the functional impairments, however, and particularly the ability to recover, would be different between the two groups. More of the younger elderly have a living spouse, who is the person most likely to be their primary caregiver. Therefore, sons and daughters are not as strongly represented as caregivers to the younger elderly. The proportion of primary caregivers with other relationships to the elderly person depends largely on the number of childless people in the group, which is more a cohort phenomenon than an age-related phenomenon. The higher proportion of spouses among the primary caregivers may lead to a larger proportion of personal care in the informal care received by the younger elderly.

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The use of services by younger old people will present a different profile than has been seen for the older group, with fewer and shorter stays in hospital and less use of long-term institutions. Results from the Larvik study cannot be applied universally to younger old persons. Many of the tendencies would likely be the same, but the degree of difference would be obvious, and this difference would increase with decreasing age. Larvik and Norway Can the results from this study tell us anything about the state of affairs in other parts of Norway? Chapter 2 includes an analysis of the system of services in Larvik as utilized by the study population. The main characteristics of this population are described in Chapter 4. In both cases, comparisons were made with different types of national averages. Local conditions in Larvik were shown to fall within the broad framework of the nationally typical characteristics applying when the data were collected. As for the generalization value of the analyses of ADL limitations, it is worth noting that, for the same cohorts, mortality was higher in Larvik than in the country as a whole. Therefore, it is difficult to say whether the duration of ADL impairment was shorter, longer, or equal to a hypothetical national average, for it depends on possible differences in life expectancy without disability. If non-impaired life were longer in other locations, the differences caused by lower mortality would be wholly or partly eliminated. If non-impaired lives were shorter in other places, the life expectancy without disability must, by definition, have been longer. I cannot find any theoretical reason to believe that the types of ADL limitations documented in Larvik would be appreciably different elsewhere. The family structure described here cannot be unique for the old people of Larvik, compared to their cohorts in the rest of Norway. A large number of single old people were to be found in this age group all over the country, despite a particularly large proportion in the towns. I therefore assume that the primary caregivers’ relationships with their elderly people and the primary caregivers’ caregiving functions in the study population are common for the period in question. It is unlikely that the families’ caregiving work would have been substantially affected by local culture and tradition or by variations among municipalities in the extent, organization, and workings of the system of services. Larvik does differ from many other Norwegian municipalities in several ways, however, because of its topography, the stability of its population, its larger proportion of working classes, and the organization of its health and social welfare services. Some municipalities are larger than the whole of Vestfold County, in which Larvik is located. Large parts of Norway have vastly different topographies, population densities, and climates. There is no

166 Looking back and summing up question of Larvik’s home nurse requiring a boat to visit patients, for instance, or of old people being snowed in during winter – situations which may occur in other parts of Norway. The population of Larvik was geographically stable both before and during the study period. There was some immigration to the municipality, but little emigration outside of the surrounding area. In many Norwegian municipalities the old people remain, while the younger generations move – often far away. The study population was to all intents and purposes a classic workingclass population. It contained only a couple of retired farmers and a small group of academics. This is not typical of Norway’s occupational variation, but I doubt that this composition has led to serious distortions of results. Only in the case of service utilization did socio-economic status have any effect. Probably, the most important distinguishing feature of Larvik’s health and social welfare service was a hospital in the centre of the town. It is common knowledge that the use of hospital services is in inverse proportion to the distance to the institution. Although hospital usage was higher in Larvik than in other nearby municipalities without hospitals, the difference was not dramatic (Otterstad 1987). It is difficult to know with certainty if Larvik’s special characteristics influenced the results of this study, but they are, in all probability, part of a broad pattern that applied to many Norwegian municipalities during the study period. In conclusion, I believe it reasonable to say that the findings of this study and the general picture of the results is fairly typical of Norway during the study period. It is further hoped that these results can be applied, albeit with some restrictions, to Nordic health systems in particular and to socialized health systems in general. New elderly Are the results of the Larvik study of general interest for the future? The analyses of disabilities will probably become less dated than will the analyses of family care, and especially the analyses of the use of health services. Although the bodies of new generations will also change, as bodies have historically done, these changes are taking place much, much more slowly than are changes in the social context. New birth cohorts will be less exposed to selection in the course of their lives. They have lived, to a greater degree than their forebears, with antibiotics and vaccines; they have enjoyed better work environments, experienced less physical toil, and receive steadily better health care. More of them will live to a great age, some with greater frailty and some with greater health. In which direction the balance between these groups will tip during different periods – whether there will be a compression of

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morbidity, whether it will remain unaltered, become extended, or fluctuate, is an open question (see the discussion in Chapter 5, pp. 53–4). The family structure that was typical of the study population has been undergoing change for some time. How will divorce, remarriage, and cohabitation affect family care in the future? How has the situation been affected by changes in women’s participation in the labour market in recent years? How will it be affected by the increasingly nurturing role that men have increasingly played in their families? It is difficult to conceive of any immediate changes in certain aspects of family care: that most old people will have someone to turn to, that the family can and will provide a great deal of practical help, and that this help will, in the main, be provided by women. The similarity of these conditions across countries (see Chapter 6, pp. 91–2) and the strong standards associated with this type of help, argue against rapid change. We have seen that the system of care for the elderly exemplified in Scandinavia leads to a distribution of work in which informal care and formal care are complementary. As long as this distribution remains, and as long as the financing of formal care is considered a public responsibility, there will be few strong pressures from outside towards changing the family caregiving effort. The system of services is changing rapidly, as are many aspects of medical practice and the ways in which hospitals and nursing homes are run. We have already seen a gradual deinstitutionalization of care of the elderly – a trend that will probably continue. Over time, the sum of the changes will cause period effects, and the description of the use of services presented here will soon become misleading. New cohorts will experience new and different types of services; in fact, this step has already begun to occur in Norway. However, in this connection it is important to distinguish between the functions of the services (for example, 24-hour care and the treatment of acute illness); and where, and the different ways in which, these functions are conducted. There may be fewer or more stays in hospital, but such stays will very probably be shorter. Sheltered housing and assisted living facilities will probably assume some of the functions that were earlier the responsibility of nursing homes. Some hospital functions may be transferred to the nursing home, while the hospital, on its part, will be able to offer old people treatment using new, advanced technologies in its outpatient and day wards. However, except for this use of new technologies in the treatment of the elderly, the situation seems to be more a matter of moving functions, rather than changing them fundamentally. Paradoxically, the best arguments in support of the generalization of the main results of this study do not come from similar Norwegian or Nordic studies, for they do not exist. As we have seen in Chapters 5 to 7, there are some studies from other European countries and from North America with comparable results to those of the Larvik study. These similarities

168 Looking back and summing up apply to the structure and duration of ADL limitations, the distribution and extent of help from the primary caregiver and others, withdrawal from caregiving because of role overload, total use of hospital and nursing home before death, and the relative importance of institutional factors. There are some deviations. The most obvious is the analysis of sons and daughters taking the role of primary caregivers. Here the results from Larvik deviate from most other studies by showing that, in their role as primary caregivers, the content and duration of the caregiving of sons is comparable to that of daughters. On the other hand, the Larvik study confirms the findings of other studies insofar as daughters are twice as likely as sons to assume the caregiving role. As regards our analyses of courses or careers, there are no comparable studies. However, for these analyses especially, what is important is the perspective – the models and ways of thinking – not the empirical details on the different states, transitions, and order of occurrence. All in all, I conclude that the main results from Larvik can be generalized to many other places in Norway – and, I would like to believe, elsewhere – and that some of the results will also be valid for new cohorts of very old Norwegians. The younger elderly, however, show a different distribution both of ADL limitations and use of services, and a different kind of family care than described for the study population.

Implications for policy and planning The most important consequence of this study for policy on care of the elderly and the planning of services is that it helps to correct the fundamental perception of care for the elderly. The approach to care of the elderly is often static, but it is, in reality, part of a dynamic process that develops over time. The results of the Larvik study have helped in the following ways to correct the picture on which policy on care of the elderly is based: •

•

As for functional loss, there is reason to assume that the majority of the age group with which this study is concerned will, sooner or later, require extensive help over a long period. This will probably not be the case for a distinct minority, but it is not for these people that caregiving services are planned. The rehabilitation of old people is important, and is usually effective in the case of minor complaints of short duration. When it comes to diseases that lead to serious functional impairment, however, the potential for improvement is probably limited, at least for persons over the age of 80. One must be careful not to base the care of the elderly on the ideology of rehabilitation only. If the goal is to reduce old people’s dependence on extensive help from others, it is necessary to improve the prevention, treatment, and rehabilitation of dementia, osteoarthritis, injuries, and stroke. This ideal demands the systematic development

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•

•

•

of programmes to stimulate all levels of health professionals to improve their competence and practice in these areas. As for family care, it is reasonable in a policy perspective to assume that most old people will have at least one relative to turn to for help. The help is usually stable, often provided over a long period, and usually takes the form of various types of practical support in everyday life. In the age group analysed in this study, it was primarily the offspring, and especially the daughters, who assumed the caregiving duties. However, there must be an unused potential for informal care among sons: more sons should share the caring work with their wives and sisters or accept primary responsibility. The study has shown that sons are perfectly capable of caregiving, and as changing gender roles free more and more men to experience their nurturing capabilities, it is likely that the family’s share of caregiving activities will slowly reach a more equal distribution. Given the family status of today’s Norwegians, there will not be as many unmarried and childless old people in the indefinite future as there were in the last decades. Paradoxically, in Larvik and in Norway as a whole, this trend does not greatly change the demand for services, because the unmarried and childless in this study also received extensive informal care and did not utilize formal services to a much greater extent than did those who were married with children. To determine if this situation exists in other countries is yet another area for future research. As for the use of services, the most important thing to be learned from this study is that, in terms of function, the hospital service should be looked upon as a part of care for the elderly, despite the fact that it does not formally play that role. The study has also shown that the tasks facing the hospital in its efforts to meet the needs of the elderly are complex and varied. It is important to improve the understanding of this complexity, and to develop better routines for contact between the persons concerned and the health services responsible for the care of old people before, during, and after their hospital stays.

Final remarks: the fourth age The expression the fourth age originates from the English historian Peter Laslett’s well-known book A Fresh Map of Life: The Emergence of the Third Age (Laslett 1989). Laslett argues for the following division of the modern life course: • •

the first age (childhood and adolescence) – marked by dependence, socialization, and education; the second age (working life) – marked by maturity, independence, and social and family responsibilities;

170 Looking back and summing up • •

the third age (retirement and early old age) – with the possibility to realize a number of dreams and objectives; and the fourth age (old age in the real meaning of the term) – the age of new dependence and bodily failure.

Laslett shows that the third age now includes a large part of the population, lasts longer, and presents more possibilities for self-fulfilment than ever before. Material and cultural developments have implied that, in industrialized societies, the life course now contains a new, productive stage between working life and old age. The German gerontologist, Paul Baltes, has elaborated on Laslett’s terms (Baltes and Smith 1999). The basis of Baltes’ thinking is that the course of life in very old age shows an ‘architecture’ with biological and cultural deficiencies: the body breaks down to a degree for which our present social – including medical – resources are unable to compensate. The selection mechanisms that, throughout time, have passed on good health to one generation after another (biological evolution) are of little importance for health in old age. Although the need to compensate for this situation is increasing, our culture is still relatively unable to cope. In the third age – from about 60 to 80 years – culture and social forces in industrialized societies have been able to compensate for many of our inherent biological weaknesses. But then the proportion of our remaining days when we must live with frailties starts to accelerate rapidly. Baltes sheds light on this subject by using data from The Berlin Aging Study (see Baltes and Mayer 1999). Employing 23 indicators from geriatric, psychiatric, psychological, and sociological assessments and tests, Baltes and his colleagues performed a cluster analysis that categorized old people into four groups with good, medium, poor, and very poor functional ability – medically, psychologically, and socially. The 70–9 year group contained many with good and only a few with poor levels of functioning. Between the age of 80 and 90 the four functional groups are distributed equally. Among persons between 90 and 100 years of age, however, the picture is the direct opposite than it is for people 20 years younger: many (60 per cent) show very poor functional ability, and only a few (5 per cent) show a good level of functioning in the widest sense (Baltes and Smith 1999). Optimal human development becomes more and more difficult when life is stretched to its extreme biological limits. Baltes maintains that the development of the species and the individual collides, which leads him to postulate a fourth age. Almost universally, new qualitative deficiencies become the rule rather than the exception, compared with what is now the case in the third age. In Baltes’ eyes, understanding the fourth age – in our times, life after the age of 80 – is an important point of address for gerontological research.

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What do elderly people themselves think about life in the fourth age? In the Larvik study, the old people are silent. It is suitable, therefore, to conclude by referring to some of the studies in which the voices of the old people have been heard. Over a period of six years, Johnson and Barer (1997) studied 150 old people in San Francisco who were 85 years or older and who lived at home. The approach was anthropological and qualitative. The purpose was to find out why many people of great age, despite serious health problems, loss of friends and relatives, and other difficulties, continue to assess their health as good and say that they are satisfied with life. The answer lies in adaptation strategies, which apply in several areas, one of which is the organization of their everyday lives. An important strategy is simplification – on the physical, social, and psychological levels. On the physical dimension, furniture and fittings are changed to make it easier to move about and maintain them. Socially, old people may reduce the number of relationships in which they engage. And psychologically, the old person reduces the threat of physical, social, or mental loss by reinterpreting experiences, an adaptation mechanism that Staudinger et al. (1999) found in The Berlin Aging Study. On the basis of less complex data, the Norwegian geriatrician, Rø, comes to a conclusion that summarizes it well: ‘Old people value what they have’ (Rø 1983: 281). The pride of becoming very old, yet being able to manage one’s life to a greater or lesser extent, is a great source of satisfaction. Johnson and Barer speak of ‘the aura of survivorship’, and find that satisfaction with life – based on the average perception – in fact increased over time within their study sample. Bury and Holme (1991), in what is considered to be an almost nationally representative study of 260 persons over the age of 90 in England, found that, although some persons in this age group may be bored, feel lonely, and experience worries, the rule tends to be the opposite. The majority are satisfied with life, and look upon it with a calm mind. The things that have the most negative effect on the quality of life are poor health and functional impairment, especially impaired mobility. Margareth Bondevik talked with 221 persons between the ages of 80 and 105 in Bergen, Norway. Half of them lived at home and utilized homebased services; the other half lived in nursing homes (Bondevik 1997, 2001). Her purpose was to study loneliness in two different contexts. About one-third of the old people in both groups felt lonely at times, with loneliness measured in several different ways. Thus the feeling did not depend on where they lived, but on age and degree of independence: those over 90 years of age and those with the greatest ADL limitations felt less lonely compared with those between 80 and 90 years of age and those who were healthier – all else being equal. This result may seem surprising at first. Upon reflection, however, it is quite natural, and is evidence of both good adaptation strategies and a

172 Looking back and summing up process of development: with frailty comes the need for help; with this need, in almost all cases, comes help in some form or another; and with this help comes the increasing presence of other people. With the Larvik study, central aspects of life in the fourth age are documented for the first time with event oriented longitudinal data. As I review the results, I have difficulty supporting Paul Baltes’ categorical statement that the lives of the very old systematically demonstrate extensive and fundamental biological and cultural deficiencies. On the basis of Johnson and Barer’s, Bury and Holme’s, and Bondevik’s talks with old people, it can be asserted that their coping strategies are indeed quite effective. And is not coping also a product of culture? Even if biological weakness in the fourth age is great, I cannot believe it reasonable to call it a fundamental deficiency in the human species. To do so is to discount the last years of the elderly people of Larvik and of old people around the world. The Larvik study population lived for an average of 2.8 years with serious functional limitations. A long time. Yet, 2.8 years would not even comprise 3 per cent of the life of a 90-year-old – of the average old person in the Larvik study. Perhaps those who are living the last years of their long lives would consider it a fair trade. One may well turn the argument around and ask: ‘Isn’t that a small price to pay for so many years of living?’

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Appendix A

Table A.1 Coverage of formal eldercare, Larvik* and Norway, five-year intervals 1970–95: home nursing and home help 1970

1975

1980

1985

1990

1995

0.8 – –

1.7 1.3 76

2.1 1.4 67

2.5 1.3 52

3.6 1.6 44

3.4 – –

69.2 – –

94.7 175.0 185

138.0 200.0 145

129.9 194.9 150

125.5 187.9 158

120.0 – –

Home nursing (person-years per 100 80+ inhabitants) Norway Larvik Larvik/Norway (%) Home help (hours per 100 80+ inhabitants per year) Norway Larvik Larvik/Norway (%)

Source: Larvik Municipality Statistics; Daatland (1990); Sosial-og helsedepartementet (1995). Note: *Here Larvik is defined as the geographical extent of the area according to the municipal boundaries in 1970. After 1988, this area corresponds to the Central Zone.

174 Appendix A Table A.2 Coverage of various types of care measures for the elderly in Larvik* and Norway, five-year intervals 1970–95: institutional care 1970

1975

1980

1985

1990

1995

20.9 15.6 75

15.4 7.8 51

11.5 7.8 68

11.3 14.9 132

10.3 10.7 104

8.6 7.1 83

15.6 16.7 107

19.2 30.0 156

21.9 27.4 125

21.0 25.3 120

18.8 21.6 115

17.1 19.5 114

36.4 32.2 88

34.6 37.8 109

33.4 35.2 105

32.3 40.2 124

29.1 32.3 111

25.7 26.6 104

Assisted living facilities (no. of places per 100 80+ inhabitants) Norway Larvik Larvik/Norway (%) Nursing home (no. of places per 100 inhabitants 80+) Norway Larvik Larvik/Norway (%) Sum of institutional coverage Norway Larvik Larvik/Norway (%)

Source: Larvik Municipality Statistics; Daatland (1990); Sosial-og helsedepartementet (1995). Note: *Here Larvik is defined as the geographical extent of the area according to the municipal boundaries in 1970. After 1988, this area corresponds to the Central Zone.

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Table A.3 Distribution of the study population by birth cohort and gender Birth cohort

Age at study start

Women

Men

All

1897–1901 1892–6 1886–91 1880–85

79–84 85–9 90–5 96–101

186 89 28 6

(60%) (29%) (9%) (2%)

77 40 4 4

(62%) (32%) (3%) (3%)

263 129 32 10

(61%) (30%) (7%) (2%)

Total

79–101

309

(100%)

125

(100%)

434

(100%)

Table A.4 Next-of-kin who participated and next-of-kin who refused to be interviewed by family relationship to EP (%) Participated Spouse Son Daughter Daughter-in-law Son-in-law Nephew Niece Sister Brother Grandchild Others Total (N)

5.2 21.6 35.8 5.7 0.5 4.4 8.2 3.9 0.0 1.5 13.1 99.9 (388)

Refused 6.7 19.6 37.0 2.1 2.1 2.1 6.5 10.9 4.3 2.1 6.5 99.9 (46)

176 Appendix A Table A.5 The probability of experiencing four types of disability trajectories before death. Multinomial logistic regression model Trajectory Independent variable

Coefficient

p-value

95% CI

Serious dementia Age at death Man Never married SES-1 SES-2 SES-3 Constant term

0.047 0.142 –1.015 0.002 0.253 0.540 0.404 0.314 0.166 0.626 Reference category –0.614 0.098

–0.016 –1.657 –0.557 –0.383 –0.502

– 0.111 – –0.374 – 1.064 – 1.190 – 0.835

0.091 0.001 –0.971 0.000 0.334 0.349 0.435 0.211 –0.039 0.898 Reference category –0.371 0.252

0.036 –1.506 –0.366 –0.247 –0.628

– 0.145 – –0.436 – 1.035 – 1.116 – 0.551

–1.01

–

0.264

0.101 0.004 –0.667 0.059 0.41 0.350 0.239 0.613 0.446 0.223 Reference category –1.626 0.000

0.032 –1.356 –0.450 –0.686 –0.271

– – – – –

0.170 0.025 1.270 1.163 1.164

–1.340 –

0.112

Severely dependent Age at death Man Never married SES-1 SES-2 SES-3 Constant term Frail Age at death Man Never married SES-1 SES-2 SES-3 Constant term Fairly healthy

–2.477 – –0.774

Reference category

Note: Age is centred at 80 years; other ages are counted by their deviance from 80. Gender: Man = 1; Woman = 0. Marital history: Never married = 1; Ever married = 0.

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Table A.6 ADL careers among study participants with serious dementia No.

ADL stages

Number and % among elderly with dementia

No long-term ADL limitations before death 1 ADL-0 → ADL-3b → Death 2 ADL-0 → Death Total

Number and in % total study population

4 0

(5) (0)

87 (20) 39 (9)

4

(5)

126 (29)

7 4

(8) (5)

62 (14) 11 (3)

11

(13)

73 (17)

14

(16)

65 (15)

1

(1)

33

(37)

Via ADL-1 to death 3 4

ADL-0 → ADL-1 → ADL-3b → Death ADL-0 → ADL-1 → Death Total

Via ADL-1, to ADL-2, then ADL-3, then death 5 6 7 8

ADL-0 → ADL-1 → ADL-3b → Death ADL-0 → ADL-1 → Death ADL-0 → ADL-1 → ADL-3a → Death ADL-0 → ADL-1 → Death

ADL-2 → ADL-2 → ADL-2 → ADL-3a →

Total

4

(1)

60 (14)

8

(9)

56

(64)

20

(5)

5 2

(6) (2)

35 4

(8) (1)

5

(6)

18

(4)

12

(14)

149 (35)

Directly to ADL-2 before death 9 10 11

ADL-0 → ADL-2 → ADL-3b → Death ADL-0 → ADL-2 → Death ADL-0 → ADL-2 → ADL-3a → Death Total

57 (13)

Directly to ADL-3 before death 12 Total

ADL-0 → ADL-3a → Death

5

(6)

13

(3)

Total

5

(6)

13

(3)

88 (101*)

Note: *Because of rounding, percentages do not always add up to 100.

418 (97*)

178 Appendix A Table A.7 Total duration of informal in-home care; effect of different variables. Cox regression; N = 231 Variable EP’s gender EP’s age at death

Coefficient

Standard error

p-values

Odds ratio

0.20

0.16

0.22

1.2

–0.03

0.01

0.02

1.0

–0.07 –0.04 Reference category

0.19 0.21

0.71 0.84

1.1 1.0

0.15

0.37

1.1

0.19 0.28 0.17

0.02 0.02 0.00

1.6 1.9 1.8

EP’s socio-economic status SES-1 SES-2 SES-3 Whether EP lives alone

0.13

NOP’s relation to EP Spouse Son Daughter Other

0.44 0.65 0.56 Reference category

–2 Log likelihood = 2029.97 Note: Gender: Man = 1; Woman = 0. Whether EP lives alone: Yes = 1; No = 2. EP’s socioeconomic status and NOP’s relation to EP are analysed with the help of dummy variables. The model examines only the effect of two or more values of these variables, compared with one of the others – the reference category.

Appendix A 179 1111 2 3 4 5111 6 7 8 9 1011 1 2 3111 4 5 6 7 8 9 20111 1 2 3 4 5111 6 7 8 9 30111 1 2 3 4 5 6 7 8 9 40111 1 2 3 44 45111

Table A.8 Did it ever become too much for you? Logistic regression analysis; N = 285 Coefficient

Standard error

Primary loads Content of the caregiving phase Contact 1.44 0.47 Practical help 1.94 0.72 Personal care Reference category Whether NOP experienced an escalation phase

p-value

Odds ratio

0.00 0.01

4.20 6.93

1.67

0.34

0.00

0.19

Secondary loads Whether NOP had other caregiving responsibilities

0.75

0.34

0.03

0.47

NOP’s health Good Average Poor

1.24 0.38 2.22 0.61 Reference category

0.00 0.00

3.47 9.21

0.50 0.51 –0.10 0.51 Reference category

0.33 0.85

1.64 0.91

–1.12

0.01

0.33

–2.41 0.65 –1.94 0.73 Reference category –0.39 0.40

0.00 0.01

0.09 0.14

0.33

0.68

1.19

0.38

0.00

3.28

1.17

0.90

0.19

Occupational activity Full-time employed Part-time employed Not occupationally active Background factors NOP’s gender Modifying and amplifying factors Relationship between NOP and EP Good Average Poor Whether NOP was the sole caregiver Whether NOP and EP lived together Constant –2 log likelihood = 249.6

0.41

Note: If NOP experienced an escalation phase/If NOP had other caregiving responsibilities/ If NOP was the sole caregiver/If NOP lived with EP: Yes = 1; No = 0; Man = 1; Woman = 0.

Gender Man 47 Woman 53 Total 100 ADL career Seriously demented 6 Severely dependent 6 Frail 8 Fairly healthy 80 Total 100 Formal home care No 23 Home help 37 Home nursing 12 Home help and home nursing 28 Total 100 EP lives alone 39 NOP is Spouse 21 Son 15 Daughter 26 Others 38 Total Age at death (years) 87.4 (N) (83)

Hospital career

26 74 100 28 50 13 9 100 29 27 9 35 100 58 6 21 39 34 89.7 (201)

22 43 22 13 100 10 27 7 57 101 54 5 17 39 39 89.7 (116)

Permanent nursing home career

17 83 100

Nursing home commuter career

Table A.9 Institutional career by EP characteristics (%)

88.4 (27)

8 29 29 33

28 28 0 44 100 73

0 0 12 88 100

24 76 100

89.2 (427)

9 19 36 36

23 29 9 40 101 54

20 37 15 29 101

28 72 100

Assisted All living facility careers

(427) (96) (123) (37) (171) (334) (412) (36) (78) (148) (150)

p < 0.001

p < 0.05 p < 0.01

(434)

(434) (87) (156) (62) (122)

p < 0.001

p < 0.01

(427) (118) (309)

(N)

p < 0.001

pvalues

Appendix A 181 1111 2 3 4 5111 6 7 8 9 1011 1 2 3111 4 5 6 7 8 9 20111 1 2 3 4 5111 6 7 8 9 30111 1 2 3 4 5 6 7 8 9 40111 1 2 3 44 45111

Table A.10 The effect of socio-demographic variables, ADL career, informal caregiving resources, and use of nursing home on the probability of admission to hospital during the last ten years before death. Logistic regression model; N = 335 Coefficient

Standard error

p-value

Odds ratio

Gender

–0.18

0.42

0.67

0.83

Age at death 80–85 years 85–90 years 90 years

0.55 0.80 Reference

0.46 0.39

0.24 0.04

1.73 2.21

Socio-economic status SES-1 SES-2 SES-3

–0.05 0.38 Reference

0.45 0.43

0.91 0.37

0.95 1.47

0.58

0.57

1.39

0.98 1.31 1.28 Reference

0.41 0.62 0.61

0.02 0.04 0.04

2.67 3.69 3.61

–0.35

0.36

0.34

0.71

Primary caregiver Son Spouse Other Daughter

0.74 –0.15 0.41 Reference

0.54 0.67 0.45

0.17 0.83 0.36

2.09 0.86 1.51

Nursing home resident

–0.40

0.59

0.50

0.67

0.52

0.94

0.58

Socio-demographic variables

Marital status ADL career Severely dependent Frail Fairly healthy Serious dementia

0.33

Informal caregiving resources Lives with another person

Constant term

Note: Gender: Man = 1; Woman = 0. Civil status: Ever married = 1; Never married = 0. Household: Live with another person = 1; Live alone = 0. Nursing home resident: Yes = 1; No = 0.

182 Appendix A Table A.11 The effect of socio-demographic variables, ADL career, informal caregiving resources, and use of nursing home on the total duration of all hospital admissions during the last ten years before death. Cox regression model; N = 289 Coefficient

Standard error

p-value

Odds ratio

0.15

0.61

1.09

Socio-demographic variables Gender

0.08

Age at death 80–85 years 85–90 years 90 years

–0.82 –0.39 Reference

0.17 0.14

0.00 0.01

0.46 0.69

Socio-economic status SES-1 SES-2 SES-3

–0.48 –0.15 Reference

0.18 0.15

0.01 0.32

0.62 0.85

0.20

0.13

0.74

0.19 0.23 0.23

0.00 0.06 0.05

0.53 0.69 0.76

0.14

0.96

1.01

1.03 0.97 0.91

Marital status ADL career Severely dependent Frail Fairly healthy Serious dementia

0.30 –0.64 –0.42 –0.65 Reference

Informal caregiving resources Lives with another person

0.01

Primary caregiver Son Spouse Other Daughter

–0.03 –0.17 –0.13 Reference

0.17 0.25 0.17

0.86 0.48 0.44

Nursing home resident

–0.62

0.19

0.00

Note: Gender: Man = 1; Woman = 0. Civil status: Ever married = 1; Never married = 0. Household: Lives with another person = 1; Lives alone = 0. Nursing home resident: Yes = 1; No = 0.

Appendix A 183 1111 2 3 4 5111 6 7 8 9 1011 1 2 3111 4 5 6 7 8 9 20111 1 2 3 4 5111 6 7 8 9 30111 1 2 3 4 5 6 7 8 9 40111 1 2 3 44 45111

Table A.12 The effect of socio-demographic variables, ADL career and informal caregiving resources on the probability of being admitted to a nursing home before death. Logistic regression model; N = 335 Coefficient

Standard error

p-value

Odds ratio

0.41

0.92

1.04

Socio-demographic variables Gender

0.04

Age at death 80–85 years 85–90 years 90 years

–0.42 –0.33 Reference

0.48 0.43

0.38 0.44

0.65 0.72

Socio-economic status SES-1 SES-2 SES-3

–0.19 0.14 Reference

0.53 0.44

0.73 0.76

0.83 1.14

Marital status

–0.54

0.61

0.37

0.58

ADL career Severely dependent Frail Fairly healthy Serious dementia

0.26 –1.72 –4.18 Reference

0.77 0.73 0.67

0.73 0.02 0.00

1.30 0.18 0.02

–0.12

0.40

0.76

0.88

–0.71 –2.09 –0.82 Reference

0.54 0.72 0.51

0.19 0.00 0.11

0.49 0.12 0.44

Informal caregiving resources Lives with another person Primary caregiver Son Spouse Other Daughter Constant term

2.40

1.15

Note: Gender: Man = 1; Woman = 0. Marital status: Ever married = 1; Never married = 0. Household: Lives with another person = 1; Lives alone = 0.

184 Appendix A Table A.13 The effect of socio-demographic variables, ADL career and informal caregiving resources on the total duration of all stays in a nursing home prior to death. Cox regression model; N = 242 Coefficient

Standard error

p-value

Odds ratio

Gender

–0.20

0.17

0.23

0.82

Age at death 80–85 years 85–90 years 90 years

0.48 0.43 Reference

0.20 0.15

0.02 0.00

1.61 1.53

Socio-economic status SES-1 SES-2 SES-3

0.42 0.14 Reference

0.19 0.17

0.02 0.41

1.53 1.15

Marital status

–0.04

0.23

0.86

0.96

ADL career Severely dependent Frail Fairly healthy Serious dementia

0.03 0.69 1.26 Reference

0.17 0.23 0.26

0.84 0.00 0.00

1.03 2.00 3.53

0.14

0.16

1.23

0.34 0.32 0.32

0.41 0.60 0.36

0.83 0.75 0.64

Socio-demographic variables

Informal caregiving resources Lives with another person Primary caregiver Son Spouse Other Daughter

0.02

–0.18 –0.29 –0.44 Reference

Note: Gender: Man = 1; Woman = 0. Marital status: Ever married = 1; Never married = 0. Household: Lives with another person = 1; Lives alone = 0.

1111 2 3 4 5111 6 7 8 9 1011 1 2 3111 4 5 6 7 8 9 20111 1 2 3 4 5111 6 7 8 9 30111 1 2 3 4 5 6 7 8 9 40111 1 2 3 44 45111

Appendix B

Note: To protect the identity of the people involved, the following information has been deleted from the genogramme: age, place of residence, year of birth, year of death, and year of divorce, if applicable.

Office clerk

Electrician

Homemaker

Stationery engineer

Bank clerk

Restaurant Primary Kindergarten kitchen help school teacher teacher

Estate agent

Carpenter

Figure B.1 Genogramme for Case 351 in the study population.

Primary school teacher

Homemaker

IP/NOP

Homemaker

EP

Office clerk

Student

Student

Helping husband (in his small business)

Kindergarten teacher

Self-employed

Appendix B 187 1111 2 3 4 5111 6 7 8 9 1011 1 2 3111 4 5 6 7 8 9 20111 1 2 3 4 5111 6 7 8 9 30111 1 2 3 4 5 6 7 8 9 40111 1 2 3 44 45111

Interview guide Name of EP:

.............................................................................................................................

Date of birth of EP: Date

.............................................................................................................

...............................................................................................................................................

Time of interview

..................................................................................................................

Place of interview

.................................................................................................................

Telephone number of interviewed person (IP) Address of IP

.....................................................

...........................................................................................................................

......................................................................................................................................................

Who was interviewed Relationship to EP

..........................................................................................................

................................................................................................................

Any other supplementary information from ......................................................................................................................................................

Interviewer’s name ......................................................................................................................................................

Interviewer’s perception and assessment of the conversation: ...................................................................................................................................................... ...................................................................................................................................................... ......................................................................................................................................................

Begin by explaining the purpose of the survey and the purpose of this conversation. There are 5–6 main points you wish to talk about: • • • • •

EP’s life: health, occupation, interests, personality. Gain an overview of EP’s family situation. What EP’s health and need for care/help has been like in recent years. What consequences this has had for the family, who has helped with what. The use of the care/help system: hospital, nursing home, home nursing, home help, doctor.

188 Appendix B A

From the life history

1 What sort of occupation did EP have during most of his/her adult life? NB: if EP is a woman and has been economically active, ask about full-time/part-time and what period of life this concerned. If EP is a widow: what sort of occupation did her husband have? If EP is a widower: what sort of occupation did his wife have? (NB: full- or part-time.) 2 How was EP’s health for most of his/her adult life? ‘Strong as an ox’? Long periods of illness? Often in hospital/at the doctor’s/took a lot of medicine? Psychiatric problems? If often sick: elicit the consequences for EP and any others/how this inhibited EP. 3 Has EP taken part in any associations or clubs/local politics/activities/ hobbies as an adult? 4a How would you characterize EP as a person? (Catchwords: pleased with life, harmonious, independent, extroverted, strong, kind, active, dependent, weak, anxious, stubborn, egotistical, irritable, dominating . . . .) 4b How do you think EP tackled being sick and in need of help in his/her old age? (Catchwords: strong-willed, determined, realistic, courageous, independent, took it well, wanted to cope him-/herself, became querulous, eccentric, dominating, fearful, complaining, gave up easily, demanding, would not admit to needing help . . . .) B

Overview of family situation

5 Draw a ‘family map’ (genogramme). Explain why you’re doing that. Say that there may be a number of details, but the purpose is to bring out different aspects of the contact the various family members have had with EP, both previous to and during EP’s final years. Outline what is known from before via other information, then things will go more easily. The following information must be included: •

EP him-/herself: year of birth, occupation.

•

Spouse (if EP is married/a widow/widower): year of birth, (year of death), when s/he was married, spouse’s occupation.

Appendix B 189 1111 2 3 4 5111 6 7 8 9 1011 1 2 3111 4 5 6 7 8 9 20111 1 2 3 4 5111 6 7 8 9 30111 1 2 3 4 5 6 7 8 9 40111 1 2 3 44 45111

•

EP’s children: year of birth (year of death), gender, where s/he lives (lived), marital status, occupation. (NB: degree of occupational activity, if and when s/he retired MUST be included for any primary caregiver (NOP)/spouse.) Spouse: children-in-law, year of birth/year of death, occupation. Remarriage if any, if someone has lost his/her spouse/been divorced.

•

EP’s grandchildren: year of birth, gender, where they live, occupation, marital status. For those grandchildren who are married: same information for spouse.

C

•

EP’s great-grandchildren: how many boys and girls in each marriage, present age.

•

EP’s siblings: how many in all, how many surviving now.

Family relationships

Sit with the chart in front of you. Say that you are going to talk about the relationships between these people, particularly contact and assistance, both from EP to others and from others to EP. 6 Were there/are there any of these people that EP was particularly closely tied to? Go from generation to generation: children/childrenin-law, grandchildren, great-grandchildren. In what way? 7 Were there/are there others outside the family who have been particularly close to EP in recent years/EP’s last years? 8 Who has EP seen most of in his/her latest years? 9 Where does/did EP usually celebrate Christmas in recent years? 10a It is not unusual for there to be problems between some family members. Are there any of these people that EP might have had a problematical relationship with? Point to the generations in order; concentrate particularly on EP’s children and children-in-law. In what way was it problematical?

190 Appendix B 10b Is there anyone here whom you have found problematical? How? 11 How would you describe the relationship between EP and you throughout the years? 12 Elderly people are not only recipients of help and care. It may also be the opposite case: that they give practical or financial help to others in the family. Would you say that EP gave some of this to you, to (other) children, grandchildren or great-grandchildren? Graded answers:

To a high degree To whom? When? How? To some degree Only to a small degree Never

13 Ask in particular whether EP babysat/helped with children for anyone. D EP’s function and dependence over the past years Use the graphic presentation in the card showing EP’s paths in the care system as your point of departure. Go from year to year. You are advised to use episodes of service use as ‘milestones’. But first: 14 When did you think that EP was starting to go downhill? 15 When has EP had problems over a lengthy period (>3 months) with: Ordinary housework

Dressing Moving Eating In and out of bed Personal hygiene (washing self and going to the toilet)

Anxious Depressed Very forgetful Unclear Aggressive (Specify)

Incontinence Urine Excretion (Specify)

1981

..........................

..........................

..........................

1982

..........................

..........................

.........................

. . .

Appendix B 191 1111 2 3 4 5111 6 7 8 9 1011 1 2 3111 4 5 6 7 8 9 20111 1 2 3 4 5111 6 7 8 9 30111 1 2 3 4 5 6 7 8 9 40111 1 2 3 44 45111

E

1983

..........................

..........................

.........................

1984

..........................

..........................

.........................

1985

..........................

..........................

.........................

1986

..........................

..........................

.........................

1987

..........................

..........................

.........................

1988

..........................

..........................

.........................

1989

..........................

..........................

.........................

1990

..........................

..........................

.........................

1991

..........................

..........................

.........................

1992

..........................

..........................

.........................

1993

..........................

..........................

.........................

1994

..........................

..........................

.........................

1995

..........................

..........................

.........................

1996

..........................

..........................

.........................

Later

..........................

..........................

.........................

Care responsibility and care course

16 When EP needed help and care from his/her family in old age, how did you divide care responsibility in the family? 17 How was (were) this (these) decision(s) made? 18 Was there any disagreement about how EP was to be helped or who was to help EP? 19 ‘The care course’. (Sit with the family chart before you, and ask: ‘What was the most important thing NN [used in Norwegian to designate whoever may be among a group of people – from the Latin nomen nescio] did for EP in EP’s final years?’ Indicate who did what (extent, e.g. number of times per day, per week, per month; content, e.g. housework, types of care, transport, contact, support, visits, etc.). When?

Extent

Content

Year

...............................................................

.....................................................................

Earlier

...............................................................

.....................................................................

1981

...............................................................

.....................................................................

1982

...............................................................

.....................................................................

1983

192 Appendix B

F

...............................................................

.....................................................................

1984

...............................................................

.....................................................................

1985

...............................................................

.....................................................................

1986

...............................................................

.....................................................................

1987

...............................................................

.....................................................................

1988

...............................................................

.....................................................................

1989

...............................................................

.....................................................................

1990

...............................................................

.....................................................................

1991

...............................................................

.....................................................................

1992

...............................................................

.....................................................................

1993

...............................................................

.....................................................................

1994

...............................................................

.....................................................................

1995

...............................................................

.....................................................................

1996

...............................................................

.....................................................................

Later

Consequences of care and limitation strategies

20 Consequences of care for interviewed person (IP) if IP = NOP: Positive consequences (feels good, variation, responds . . .)? Negative consequences, in three areas: • • •

well-being (felt tied down, tired, isolated, angry, nervous) given up (friends, time for self, working life) conflicts/strains in own family life?

21a What was it like to deal with EP in his/her final years? Easy How Difficult Mixed 21b Have you given more to EP than you have been given by EP? Yes

No

There is a balance

22 (If IP = NOP): Was it at any time too much for IP? Yes/No When was that? How was it too much?

Appendix B 193 1111 2 3 4 5111 6 7 8 9 1011 1 2 3111 4 5 6 7 8 9 20111 1 2 3 4 5111 6 7 8 9 30111 1 2 3 4 5 6 7 8 9 40111 1 2 3 44 45111

23 Did IP/NOP ever try to limit his/her care responsibility? Yes/No

If No: Why not?

How?

Got others to take part/support him/her

Sought formal/public help Pulled out Other Consequences: How did limitation work? Did EP resist?

Did EP accept it?

24a Is there anyone here (on the chart) who could/should have done more for EP in EP’s final years? Yes/No

Who?

How?

24b Has money (gifts, management of benefit, etc.) or the prospect of inheritance been linked to anything you have done for EP? G Joint household and moving house 25 Have you ever lived regularly with EP over a lengthy period of time as an adult? Yes/No

When?

Why?

26 Has it ever been discussed that IP should move in with EP or EP to IP? (NB: including previously, as newly-wed for example.) 27 How have attitudes been in your own family regarding the possibility of moving together (spouse, children)? (Ultimatum from anyone?) a

Previously

b

After EP had grown old

28 What has IP felt about this him-/herself? 29 Have there been temporary stays, nights spent at home of EP/IP or others? Yes/No

When?

Why?

At whose home, and by whom? 30 If there have been moves of EP → IP or IP → EP in recent years: Who took the initiative?

Who made the decision?

Were any conditions (e.g. concerning inheritance) linked to this move?

194 Appendix B 31 What has happened to the place where EP lived most of his/her adult life? 32 Could you imagine living with other parents/parents-in-law with whom things would have been different? H Relations with the care system – transitions and decisions Fill in as much as possible in advance. Think over what you are going to ask about. Have the card in front of you. For each service/each agency (33–9 below) that has been utilized, ask about A to C: A Admission: What happened? What did EP do? What did others do (considerations, disagreements, applications . . . )? B

Discharge: Considerations Who did and thought what? Applications Disagreements

C

During stays at institutions/user episode of home care: How was EP concerning the stay/home care? How well did the service work?

33 Home help 34 Social security housing 35 Home nursing (period 1–n) 36 Family doctor/GP 37 Hospital (stays 1–n) 38 Alders Hvile/Bøkeskogen eldresenter 39 Larvik Nursing Home (stays 1–n)

Appendix B 195 1111 2 3 4 5111 6 7 8 9 1011 1 2 3111 4 5 6 7 8 9 20111 1 2 3 4 5111 6 7 8 9 30111 1 2 3 4 5 6 7 8 9 40111 1 2 3 44 45111

For EPs who have had stays at long-term institutions (38–9) and if IP = NOP: 40 How is/was EP’s life in the long-term institution? 41 How is/was IP’s life when EP is/was in a long-term institution? 42 How do/did EP and IP get on with one another then? When EP died: 43 Who was present at the deathbed? I

Background information on IP

44 Occupation (NB: full-time/part-time/when; retirement. Also applies to spouse.) 45 Own health (if health problems, list type and years when this happened): Prior to caregiving period During caregiving period After caregiving period 46 Spouse’s health (if relevant): Prior to caregiving period During caregiving period After caregiving period 47 Are there other caregiving tasks that IP has had to assume (for other old people in the family, for children, spouse, children-in-law, grandchildren, great-grandchildren, siblings, etc.)? •

Before this one?

If Yes: When?

•

At same time as this one?

If Yes: When?

•

After this one?

If Yes: When?

48 Are there other caregiving tasks IP expects to have for any of these in the years to come?

196 Appendix B J

In conclusion

49 Anything IP would have done differently/wished different? 50 Anything important we have overlooked, or not talked about? 51 May we contact you again if there is anything we have missed or anything we are wondering about? (This could be a telephone call, a simple form or a new conversation.)

Appendix B 197 1111 2 3 4 5111 6 7 8 9 1011 1 2 3111 4 5 6 7 8 9 20111 1 2 3 4 5111 6 7 8 9 30111 1 2 3 4 5 6 7 8 9 40111 1 2 3 44 45111

Year Age

ADL level

Formal service use (1977) 4 hrs

1980

80

1981

81

Home help from 02/12/77

08/12/80–05/01/81 Hospital; fracture of the spine

ADL-0 1982

04/09/81–11/09/81 Eye clinic; uveitis 27/10/81–06/11/81 Eye clinic; keratitis

82

(Husband dies)

3 hrs 1983

26/08/82–02/09/82 Eye clinic; keratitis

83

22/06/83–27/06/83 Eye clinic; keratitis 17/07/83–21/07/83

1984

84

Oct

10/12/83–02/01/84 Hospital; hip fracture 02/01/84–27/01/84 Nursing home 27/01/84– Home nursing 10/02/84 Nursing home

ADL-2

ADL-3 July (one week)

07/09/84 Death from cerebral stroke

Figure B.2 Card for Mrs Nygaard: Case 62 in the study population.

References

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1111 2 3 4 5111 6 7 8 9 1011 1 2 3111 4 5 6 7 8 9 20111 1 2 3 4 5111 6 7 8 9 30111 1 2 3 4 5 6 7 8 9 40111 1 2 3 44 45111

Index

Numbers in italics indicate pages containing figures and tables. ‘abdication’ hyphothesis 107, 111, 118 active life expectancy (ALE) 54 Activities of Daily Living indexes see ADL indexes ADL careers 61, 65, 81, 161, 181–4; fairly healthy 71, 75–6, 148, 149, 152–3, 155–8, 164; frail 70, 155–8, 164, 176; serious dementia 33, 36, 62, 72–5, 150, 153, 156–8, 164, 176–7; severely dependent 70, 71, 72, 150, 153, 155–8, 164, 176; typology of 69–70, 71, 72–6; with/without improvement 66–7, 68–9; see also ADL functions/limitations; caregiving careers; case histories ADL functions/limitations 30–2, 36, 56, 58–9, 60–1, 69, 150, 165; and diseases 76–7, 78, 79–80; durations 4, 60, 61–5, 72, 77, 78, 79–80, 163, 172; transitions between 65, 69; see also ADL careers; disability ADL indexes 30–1, 80–1 age 164–5, 166–8; adaptation to 171–2; and caregiving careers 85, 92; at death 42–3, 72, 159, 181–4; and dementia 73, 74, 75; first–fourth 169–72; and hospital admission 155–6, 157; studies into 5 Alders Hvile 16, 18, 19, 20, 102, 134, 151, 153 ALE see active life expectancy Allum, Mrs 150 Alzheimer’s disease see dementia Amundrød, Mr 146 Applegate, J.S. 107 Aske, Mrs 64–5, 70, 122

Åsrum, Mr 113–14, 122 assisted living facilities 16, 19, 20, 134, 140, 143, 145, 147, 151–2, 153, 167 Bakkane, Mrs 38, 62, 70, 75, 94, 122 Baltes, P. 170, 172 Barer, B.M. 81, 171 bed-blocking 142 Bengtson, V. 107 Bentsrød, Mrs 151–2 Berlin Aging Study 170, 171 birth cohorts 6, 25–6, 58, 59–60, 166–7 Bøkeskogen eldresenter 20, 102, 134, 151 Bondevik, M. 171 Bortz, W.M. 55, 69 Branch, L.G. 69 Bury, M. 171 caregivers see primary caregivers; secondary caregivers caregiving activities: contact 34–5, 36, 39, 94, 96, 97, 98, 103; personal care 29, 30–2, 34–6, 38, 39, 94, 96, 97, 98, 99, 100, 103–4, 111; practical help 34–5, 36, 38, 94, 96, 97, 98, 99, 100, 111–12 caregiving careers 2–3, 33–7, 82–3, 91–2, 104, 105, 106–9, 161–2; accumulation of responsibilities 122–4; duration 37, 97, 99, 100–1, 110, 114, 115, 117, 178; escalation phase 93–4, 96, 99, 100, 105, 109–10, 111; institution phase 55, 94–5, 96, 101–2, 103, 104, 105, 116,

208 Index 117, 130 n. 1, 159–60, 180; main support phase 93, 95, 96, 97, 98, 105, 109, 110; transitions 37, 38, 93–4, 97, 98, 99, 104, 105; see also ADL careers; primary caregivers case histories 23, 24, 38–9, 62–5, 68, 86–8, 112–13, 115–16, 123–4, 146, 148–52, 197; see also ADL careers; Larvik study change see period effects; transitions Chappell, N. 107 childlessness 45, 85, 86–7, 158, 169 children 45–6; see also primary caregivers, daughters/sons cohort effects 58 cohorts see birth cohorts commuting see nursing homes ‘complex states’ 77, 78, 80 compression of morbidity 53–4, 166–7 contact see caregiving activities courses see ADL careers; caregiving careers Crimmins, E. 55 cross-over of mortality 43 data collection 22; death certificates 26, 51; interviews 27–8, 119, 175, 187–96; register card design 27–8, 197; register data 26; statistics 28 death 4, 31; age at 42–3, 72, 159, 181–4; causes of 48, 50, 50–1, 54; certificates 26, 51 degree of coverage 21 dementia 32–3, 38, 70, 77, 78, 80; and caregiving role 82; and hospitalization 155–6; incidence/ prevalence 73, 74, 75; serious 33, 36, 62, 72–5, 176–7 demographics: Larvik 12–18, 25, 41, 43–4, 165–7; Norway 8–10, 41, 42, 43, 44, 45, 51, 167; see also birth cohorts; Larvik study, population Diagnostic and Statistical Manual of Mental Disorders see DSM III criteria disability: courses of 2, 53–6, 59, 176; definitions and measures 29–33; and diseases 76–7, 78, 79–80; and hospital admission 155–7; life expectancy with/without 54–5, 58, 59–60, 61; long-term 29–30, 36–7, 75; models/terminology of 56–7; prevalence 54, 73, 74, 75; see also ADL functions/limitations

diseases 32, 55; acquired/congenital 56; and ADL states 76–7, 78, 79–80; and dementia 155–6; leading to hospitalization 142; leading to nursing home care 144; need for improved treatment 168–9 divorce 52 n. 1 DSM-III criteria 32–3, 36, 73 emotional support see caregiving activities, contact environmental factors 57–8 escalation phase see caregiving careers, escalation phase Eurodem study 73, 74 event oriented studies 5, 22, 26 extra-individual factors 57, 58 fairly healthy category see ADL careers family care see informal care family structure 43–7 first age 169 formal care 18–21, 26, 100, 131–2, 133, 137, 147, 154, 163, 173, 174, 180; careers of use 132–60; duration 132, 134–5, 137, 140, 154, 156–7, 158; in escalation phase 100; in main support phase 98–9; trajectories of 3; see also assisted living facilities; home-based services; hospitalization; nursing homes fourth age 169–72 frail category see ADL careers Fries, J. 53–4 functions/limitations see ADL functions/limitations Gao, S. 75 gender differences 41, 45–50, 50–1, 181–4; in ADL careers 66, 68, 71–2, 79, 81, 109, 162, 163, 164; in caregiving careers 85–6; in institutional stays 134, 135–7, 147–8, 151, 153, 160; in life expectancy 42, 43, 59, 60–1; in marital status 44; of primary caregivers 82, 83, 89, 90, 101, 106–7, 108, 109, 110, 111, 112–13, 114, 115–16, 117, 118, 125–6, 127–8, 129, 153, 168, 169 generations see birth cohorts genogrammes 186 gerontology 4–5, 34, 53–4, 81, 82, 110, 126–7, 129, 170 Gui, Mrs 87, 88

Index 1111 2 3 4 5111 6 7 8 9 1011 1 2 3111 4 5 6 7 8 9 20111 1 2 3 4 5111 6 7 8 9 30111 1 2 3 4 5 6 7 8 9 40111 1 2 3 44 45111

Guralnik, J. 56 Gusland, Miss 88 Hagestad, G.O. 3, 45 Håkestad, Mr 148 Hanevold, Mrs 146 Havens, B. 5 healthy life expectancy (HLE) 54 Hem, Mr 149 hip fracture see injuries HLE see healthy life expectancy Holhjem, Miss 123–4 Holme, A. 171 home based services 18–19, 21, 98–9, 100, 135, 136, 153 home help/nursing see home based services Hospitalet 15 hospitalization 97–8, 181, 182, 132, 133, 134, 136, 139–40, 141, 142, 143, 145, 146, 147, 148–9, 152–3, 155–7, 166, 167, 169 hospitals 15, 21 IADL functions/limitations 31–2, 36 ICD-9/10 32–3, 50 impairment see disability, models of Implementation Team 20–1 incidence 73; of dementia 75 industry see occupations informal care 34, 82–3, 92–3, 181–4; duration 101, 178; and institutional care 159–60; trajectories of 2–3; see also caregiving careers; primary caregivers; secondary caregivers injuries 77, 78, 80 institutional care see formal care institution phase see caregiving careers, institution phase Instrumental Activities of Daily Living see IADL functions/limitations International Classification of Diseases see ICD-9/10 interviews 27–8, 119, 175; guide 187–96 intra-individual factors 57–8 Istre, Mrs 123 Jette, A.M. 30, 56, 57 Johnson, C. 81, 171 Kamo, Y. 107 Kaplan-Meier curves 42, 43 Katz, S. 30

209

Kaupang, Mrs 86–7 Kaye, L.W. 107 Kildea, D. 73–4 Ku, L. 69 Kvelde, Mr 87, 88 Larvik: demographics 12–18, 25, 41, 43–4, 165–7; geography 10, 11, 12; history 10, 11, 13–18; hospitals 15, 21; housing problems 14, 46; occupations 11, 13, 15, 47, 48, 49; welfare 14–15, 16–17, 18–21, 167; see also Norway Larvik Nursing Home 17, 19–20 Larvik study: data collection 26–8, 77, 132–3; definitions and measures 29–40; generalization 165–6, 167–8; limitations 6–7; population 6, 12–18, 25–6, 41–52, 55, 59–60, 73, 166–7, 175; research design 22, 26, 55–6; theme and purpose 2–6, 55; see also case histories Laslett, P. 169–70 Lauve, Miss 87, 88 Lewis, J. 82 life courses 3–5, 25; first–fourth ages 169–72 life expectancy 42, 54, 72; gender differences 42, 43, 59, 60–1; with/without disabilities 54–5, 58, 59–60, 61 living arrangements 46, 47 loneliness 171–2 longitudinal research designs 4–5, 22 Lunde, Mrs 116 Lysebo, Mrs 118, 121 main support phase see caregiving careers, main support phase Manton, K.G. 164 Manvik, Mrs 112, 113, 122 marital status 43, 44, 52 n. 1, 72, 158, 181–4; as determinant of occupation 47–8, 50 Melau, Mrs 115 Meredith, B. 82 Merrill, D. 82 Montgomery, R.J.V. 107 morbidity 53–4, 166–7 Mors subita see death, causes of mortality rates 42–3, 48 Nagi, S.Z. 56 NOPs see primary caregivers

210 Index Nordhus, I.H. 119, 126, 127 Norway 8, 9, 10, 13–14; compared with Larvik study 165–6; demographics 8–10, 41, 42, 43, 44, 45, 51, 167; Oslo dementia data 73, 74; welfare 19, 21, 118, 167; see also Larvik nursing homes 134, 136–7, 139, 140, 142–3, 144, 145, 147, 149–51, 153, 156, 157–8, 162, 167, 183, 184; commuting 149, 151, 153; Larvik Nursing Home 17, 19–20 Nygaard, Mrs 22, 23, 24, 38, 94, 146, 197 occupations 11, 13, 15, 47, 48, 49 Olshansky, S.J. 55 osteoarthritis 77, 78, 80 overload see primary caregivers, and health parental status 44–6 Pearlin, L.I. 82, 102, 119, 120, 121, 122, 126–7 period effects 58, 80, 136 Perls, T.T. 75 personal care see caregiving activities personal factors 57–8 practical help see caregiving activities prevalence 54; of dementia 73, 74, 75 primary caregiver pairs 39, 90, 109 primary caregivers 34–5, 37, 38, 39, 83, 84, 85–88, 89, 90, 91–2, 97, 98, 99, 152, 158, 162, 164, 165, 169, 181, 182, 183, 184; daughters/sons 82, 83, 101, 106–7, 108, 109, 110, 111, 112–13, 114, 115, 116, 117, 118, 153, 168, 169; and escalation phase 109–10, 111; and health 118–19, 120, 121–9, 179; and institution phase 103–4, 116, 117; interviews with 27, 119; and main support phase 109, 110; non-relatives 86–7, 88; see also caregiving careers reciprocity see caregiving activities, contact Reinemo, Mrs 149–50, 151 Rest Home for the Elderly see Alders Hvile risk factors 57 Ritchie, K. 73

Rø, O.C. 171 role overload see primary caregivers, and health second age 169 secondary caregivers 34, 90, 92; and primary caregiver’s gender 89 semi-care 82, 96 sequences see transitions severely dependent category see ADL careers Skalleberg, Miss 148–9 Skallist, Mrs 112–13, 122 Skogen, Mr 38–9, 63, 65, 69, 70, 76, 93, 103, 122, 157 socio-economic status 49, 72, 159, 166, 176, 178, 181–4; and hospitalization 156–7; and nursing home stays 158 state spaces 4 states see ADL functions/limitations Steinsholt, Mrs 68 Stone, R. 34 stress see primary caregivers, and health strokes 77, 78, 80 study population see Larvik study, population suicide see death, causes of Sundström, G. 81 supplementary care see caregiving careers, institution phase survival curves see Kaplan-Meier curves Tanum, Mr 39, 63, 76 third age 170 trajectories see ADL careers; caregiving careers transitions 4, 42, 56; between home and institutions 132, 137, 138, 139–44, 145–52; in caregiving 37, 38, 91, 92, 93–5, 97, 98, 99, 104, 105; see also ADL careers Vestrum, Mrs 150 waiting times see transitions Wærness, K.: caregiving typology 33 wartime 13–14, 16 welfare: Larvik 14–15, 16–17, 18–21, 167; Norway 19, 21, 118, 167 widows and widowers 43–4, 48 Wilkins, R. 55