Patient Education for People with Parkinson's Disease and their Carers: A Manual

Patient Education for People with Parkinson’s Disease and their Carers

Patient Education for People with Parkinson’s Disease and their Carers A Manual

Edited by Marcia Smith Pasqualini and Gwenda Simons in association with the EduPark Consortium

Quality of Life and Management of Living Resources

Copyright © 2006

John Wiley & Sons Ltd, The Atrium, Southern Gate, Chichester, West Sussex PO19 8SQ, England Telephone (+44) 1243 779777

Email (for orders and customer service enquiries): [email protected] Visit our Home Page on www.wiley.com Session 2 Copyright © 2006 The University of Portsmouth. The symbols used throughout this text were produced by Martina Schradi (www.laborhochzwei.de). All Rights Reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, scanning or otherwise, except under the terms of the Copyright, Designs and Patents Act 1988 or under the terms of a licence issued by the Copyright Licensing Agency Ltd, 90 Tottenham Court Road, London W1T 4LP, UK, without the permission in writing of the Publisher. Requests to the Publisher should be addressed to the Permissions Department, John Wiley & Sons Ltd, The Atrium, Southern Gate, Chichester, West Sussex PO19 8SQ, England, or emailed to [email protected], or faxed to (+44) 1243 770620. Designations used by companies to distinguish their products are often claimed as trademarks. All brand names and product names used in this book are trade names, service marks, trademarks or registered trademarks of their respective owners. The Publisher is not associated with any product or vendor mentioned in this book. This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold on the understanding that the Publisher is not engaged in rendering professional services. If professional advice or other expert assistance is required, the services of a competent professional should be sought. Other Wiley Editorial Offices John Wiley & Sons Inc., 111 River Street, Hoboken, NJ 07030, USA Jossey-Bass, 989 Market Street, San Francisco, CA 94103-1741, USA Wiley-VCH Verlag GmbH, Boschstr. 12, D-69469 Weinheim, Germany John Wiley & Sons Australia Ltd, 42 McDougall Street, Milton, Queensland 4064, Australia John Wiley & Sons (Asia) Pte Ltd, 2 Clementi Loop #02-01, Jin Xing Distripark, Singapore 129809 John Wiley & Sons Canada Ltd, 6045 Freemont Blvd, Mississauga, ONT, L5R 4J3 Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books. Library of Congress Cataloging-in-Publication Data Patient education for people with Parkinson’s disease and their carers: a manual/edited by Marcia Smith Pasqualini and Gwenda Simons; in association with the EduPark Consortium. p. cm. Includes bibliographical references. ISBN-13: 978-0-470-02791-2 ISBN-10: 0-470-02791-6 1. Parkinson’s disease–Handbooks, manuals, etc. 2. Patient education–Handbooks, manuals, etc. I. Pasqualini, Marcia Smith. II. Simons, Gwenda. III. EduPark Consortium. [DNLM: 1. Parkinson Disease–Handbooks. 2. Patient Education–methods–Handbooks. 3. Caregivers–education–Handbooks. WL 39 P298 2006] RC382.P35 2006 616.8’33–dc22 2006022116 British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library ISBN-13 978-0-470-02791-2 ISBN-10 0-470-02791-6 Typeset in 10/12 pt Optima by Thomson Digital. Printed and bound in Great Britain by Antony Rowe, Chippenham, Wiltshire. This book is printed on acid-free paper responsibly manufactured from sustainable forestry in which at least two trees are planted for each one used for paper production.

Contents

About the Editors Preface Acknowledgements Contributors

vii ix xi xiii

Part I: Introduction to the EduPark Programme

1

Chapter 1: The nature of Parkinson’s disease and the need for a multifaceted patient education programme The EduPark Consortium

3

Chapter 2: Structure of the programme and guidelines for leaders The EduPark Consortium

13

Part II: Programme Sessions

25

Session 1: Information Pille Taba, Ülle Krikmann and Eve Kanarik

27

Session 2: Self-monitoring Gwenda Simons, Marcia Smith Pasqualini and Simon Thompson

47

Session 3: Pleasant activities Michael Macht, Heiner Ellgring, Christian Gerlich and Martina Schradi

71

Session 4: Stress management for people with PD and for carers Anu Lankinen, Vappu Viemerö and Anne Lehtonen

89

Session 5: Management of anxiety and depression (for people with PD) and the carer’s challenge (for carers) Àngels Bayés Rusiñol, Mari Cruz Crespo Maraver and Anna Prats París

147

Session 6: Social competence for people with PD and for carers Noëlle G. A. Spliethoff-Kamminga and Janny de Vreugd

191

Session 7: Social support Pio Enrico Ricci Bitti and Lorena Candini

235

Session 8: Review of the programme and a look forward Christian Gerlich, Michael Macht, Martina Schradi and Heiner Ellgring

253

v

Contents

Part III: The EduPark Programme: Final Thoughts

263

The EduPark programme: Final thoughts Marcia Smith Pasqualini and Gwenda Simons

265

Appendix: Assessment Scales References

269 271

vi

About the Editors

Dr Marcia Smith Pasqualini is a clinical and academic neuropsychologist, currently working as an associate professor at Avila University in Kansas City, Missouri, USA. She received her Bachelor of Science degree from Tulane University and her PhD from the University of Missouri-Columbia. Dr Smith Pasqualini’s primary area of research is the social neuroscience of emotion and facial expression. She was employed as a senior lecturer at the University of Portsmouth for nine years, and was the Principal Investigator for the United Kingdom for the EduPark project. Dr Gwenda Simons is a social psychologist, currently working as a research associate in the Department of Experimental Psychology at the University of Oxford. Dr Simons received her MA in social psychology from the University of Amsterdam, and her PhD from the University of Portsmouth. She has published research articles in the area of facial expression and emotion, with a particular interest in people with Parkinson’s disease. Dr Simons worked as a research associate at the University of Portsmouth for the EduPark project.

vii

Preface

In 2002, the Commission of the European Union (EU) agreed to fund a research project entitled “Patient Education in Parkinson’s Disease” (QLK6-2002-02674 EduPark), which ran for two-and-a-half years. The result of these efforts was the design and implementation of an eight-session group education programme for people with Parkinson’s disease (PD) and their carers, developed within a European consortium. This consortium comprised research centres in Germany, Spain, Finland, Italy, The Netherlands, Estonia and the United Kingdom. In addition to dealing with the motor symptoms of PD, many people with PD struggle with psychological and social effects of the disease. In fact, people at every stage of PD can be faced with problems such as depression, anxiety, stressful social interactions, and difficulties communicating, all of which can disrupt their lives. The ultimate goal of the consortium, therefore, was to empower people with PD and their carers to improve their own quality of life. The programme was designed to complement the medical treatment that most people with PD already receive. Although the important function of education programmes in reducing the impact of chronic diseases on health-related quality of life is widely acknowledged, we found no comprehensive patient education programmes available specifically for people with PD. In addition, we recognised in the early stages of programme development that people living with and/or caring for people with PD face their own unique challenges when trying to cope with the effects of the disease. These relatives/friends/carers are often the primary sources of practical and emotional support for the person with PD, and we therefore decided to design a parallel education programme just for them. Professionals from many different disciplines were involved in the development of the education programme, including psychologists, specialised nurses, rehabilitation managers, general physicians, and neurologists. These professionals came from a variety of settings, including universities, self-help organisations, rehabilitation centres and hospitals. As a result, the development of the programme was itself a complex but highly rewarding European enterprise. It was not only interdisciplinary but also required taking into account diverse cultural backgrounds and variable health and social care conditions. We appreciated the strong support of the institutions involved, not the least of which was the EU, whose representatives helped us deal with complicated administrative and bureaucratic matters with much patience, keeping us true to our goal and to our timetable. The productive group spirit of the EduPark Consortium was supported by several “roundtable” meetings. We started with a “kick-off meeting” during the spring of 2003, in Würzburg, Germany, followed by workshops in Turku, Finland; Bertinoro/Bologna, Italy; Portsmouth, United Kingdom; Barcelona, Spain; and Leiden, The Netherlands. All the consortium members attended these meetings. We also held monthly email conferences, which were very helpful for resolving minor problems, alerting everyone to the latest news and changes and keeping our team spirit high. The strong dedication of all partners within the consortium to complete the task in a professional manner, together with the rewarding feedback from the people with PD and carers who participated in the programme, more than compensated for the difficulties associated with such an undertaking. ix

Preface

Empirical studies have shown that development of an effective patient education programme generally requires a systematic development process, a formative evaluation during the programme’s initial implementation, and a summative evaluation (Van Driel & Keijsers, 1997). During the funding period of the EduPark project, the first two of these steps were accomplished, in three major stages: (1) basic development; (2) application and evaluation; (3) revision and final development. During the basic development stage, a first draft of the education programme was completed by the consortium of experts, with input and feedback from people with PD and carers. A modified Delphi technique was used. First, seven key components were identified and defined: (1) the ability to find information that was needed; (2) self-monitoring; (3) health empowerment through an increase in pleasant activities; (4) stress management; (5) management of anxiety and depression; (6) social competence, and (7) social support. Outlines of proposed subject areas for these seven key components were then prepared separately for people with PD and for carers, followed by development of more detailed contents for each session. Various approaches were used, including presenting information about PD and its effects on various aspects of daily life, teaching participants practical skills and helping participants to apply their knowledge toward self-management of the disease. The sessions were then finalised and a draft version of each session was prepared in English. Each draft was then translated into German, Spanish, Finnish, Italian, Dutch, and Estonian and the contents were adapted to local conditions as needed. During the application and evaluation stage, the standardised education programme was presented to groups of people with PD and their carers in the seven participating countries, with ongoing evaluation of its practicality and effectiveness. The results of these first trials informed our efforts during the revision phase, during which systematic collection of feasibility data continued. Participants were asked about the appropriateness of the learning objectives, the clarity of the content of the programme sessions and the overall quality of the programme. Moreover, participants completed standardised questionnaires related to quality of life. The group leaders made minor revisions of the instructions and materials as needed, and provided feedback to the consortium about their experiences. More substantive adaptations to session contents were made during the final development stage, with the agreement of all partners. This development process resulted in a programme that can be adapted to many different cultural backgrounds. We hope that you will find it useful for providing the psychological and social support that so many people with PD and their carers have indicated they need, empowering them to improve their quality of life and to deal with the effects of PD in the best way they can. Marcia Smith Pasqualini Gwenda Simons

The sessions, including handouts, are available free online to purchasers of the manual. Visit www.wiley.com/go/parkinsonsdisease to find out how to access and download the sessions.

x

Acknowledgements

This manual would not have been possible without the financial and practical support of the EU, as well as from people and institutions in each of the seven partner countries in the consortium. In the United Kingdom, we are grateful for the input and support from members of the local branches of the Parkinson’s Disease Society (PDS) in Fareham and Portsmouth, and in particular Valerie and John Rossiter, who have encouraged our research and education efforts over a period of several years. We would also like to specifically thank the people with PD and their partners in the greater Portsmouth area who volunteered to take part in our sessions and to provide us with valuable feedback. Staff Nurse Ceri Rayner from the Trevor Howell Day Hospital in Portsmouth helped us develop and adapt the education programme for use in the United Kingdom, led several of the groups when the programme was first implemented, and provided helpful feedback in the writing and editing of this manual. Thank you, Ceri! We would also like to thank administrators and staff at the Trevor Howell Day Hospital, and the East Hampshire Primary Care Trust, for their assistance in implementing the programme and providing us with a suitable location in which to conduct the sessions. Dr Simon Thompson participated in the organisation and administration of the EduPark grant and contributed to the development of the programme materials. We appreciate the help of Monja Knoll and Craig Steer, students at the University of Portsmouth, who assisted in the implementation of the programme. Finally, this project could not have been completed without the continued support of the University of Portsmouth, and in particular the Head of the Department of Psychology, Dr Vasudevi Reddy.

xi

Contributors

Àngels Bayés Rusiñol Neurologist, Director of Unitat de Parkinson, Centro Médico TEKNON, Spain; Fundació de Neurocirurgia Funcional, Spain. Mari Cruz Crespo Maraver Clinical Psychologist, Unitat de Parkinson, Centro Médico TEKNON, Spain; Fundació de Neurocirurgia Funcional, Spain; Hospital St Joan de Déu de Manresa, Spain. Lorena Candini Researcher, Department of Psychology, University of Bologna, Italy. Heiner Ellgring Professor of Psychology, Department of Psychology, University of Würzburg, Germany. Christian Gerlich Research Coordinator, Department of Psychology, University of Würzburg, Germany. Eve Kanarik Psychologist, Department of Rehabilitation, Tartu University Clinics, Estonia. Ülle Krikmann Neurologist, Department of Neurology and Neurosurgery, University of Tartu, Estonia. Anu Lankinen Psychologist, Finnish Parkinson’s Disease Association, Finland. Anne Lehtonen Rehabilitation Manager, Finnish Parkinson’s Disease Association, Finland. Michael Macht Professor of Psychology, Department of Psychology, University of Würzburg, Germany. Anna Prats París Neuropsychologist, Unitat de Parkinson, Centro Médico TEKNON, Spain; Fundació de Neurocirurgia Funcional, Spain. Pio Enrico Ricci Bitti Professor of Psychology, Department of Psychology, University of Bologna, Italy. Martina Schradi Researcher, Department of Psychology, University of Würzburg, Germany. xiii

Contributors

Gwenda Simons1 Research Associate, Department of Psychology, University of Portsmouth, United Kingdom. Marcia Smith Pasqualini2 Senior Lecturer and Clinical Neuropsychologist, Department of Psychology, University of Portsmouth, United Kingdom. Noëlle G. A. Spliethoff-Kamminga Health Psychologist, Department of Neurology/Neuropsychology, Leiden University Medical Center, The Netherlands. Pille Taba Associate Professor of Neurology, Department of Neurology and Neurosurgery, University of Tartu, Estonia. Simon Thompson Specialist in Clinical Neuropsychology, Neuropsychology Assessment and Consultancy, Portsmouth, United Kingdom, and Principal Investigator (EduPark UK), formerly Visiting Professor of Clinical Neuropsychology, University of Portsmouth, United Kingdom. Vappu Viemerö Senior Lecturer, Åbo Akademi University, Department of Psychology, Finland. Janny de Vreugd3 Psychologist, Department of Neurology/Neuropsychology, Leiden University Medical Center, The Netherlands.

1

Current affiliation: Department of Experimental Psychology, University of Oxford, United Kingdom Current affiliation: School of Psychology, Avila University, Kansas City, USA 3 Current affiliation: Department of Psychology, University of Leiden, The Netherlands 2

xiv

PART I: INTRODUCTION TO PROGRAMME

THE

EDUPARK

Chapter 1: The Nature of Parkinson’s Disease and the Need for a Multifaceted Patient Education Programme The EduPark Consortium

Patient Education for People with Parkinson's Disease and their Carers: A Manual. Edited by Marcia Smith Pasqualini and Gwenda Simons. Copyright © 2006 John Wiley & Sons, Ltd.

The Nature of Parkinson’s Disease

Introduction Parkinson’s disease (PD) presents a variety of challenges for those living with this chronic neurological disorder. The aim of the EduPark patient education programme described in this manual is to empower people with PD and the people who live with and/or care for them (hereafter referred to as “carers”) to deal with these challenges. The Charter for People with PD, launched in London on 11 April 1997 by the European Parkinson’s Disease Association, stated that people affected by PD have the right to take part in managing the illness, as well as the right to be supported in the management of their disease by expert personnel knowledgeable about PD. The EduPark Consortium has developed a programme incorporating these ideas, integrating the work of interdisciplinary teams based in seven European countries. In this manual you will find the essential education materials and guidance you will need to conduct this standardised, eight-session “patient education” programme in a group format, for people with PD and for their carers. The working definition for patient education in PD used by the EduPark Consortium was: “A systematic and professional approach to support patients and carers by teaching knowledge and skills in order to improve their quality of life, complementing medical treatment.” Beneficial effects of patient education for other diseases are documented in several metaanalyses (e.g. Padgett, Mumford, Hynes & Carter 1988; Di Fabio, 1995; Meyer & Mark, 1995; Brown, 1996; Devine, 1996; Maier-Riehle & Härter, 1996; for a second stage meta-analysis cf. Cooper, Booth, Fear & Gill, 2001). Patient education programmes typically have three major goals: (a) to teach factual knowledge about the condition and encourage attitude change, (b) to teach practical skills, and (c) to help patients integrate knowledge and skills in order to improve self-management of their disease (cf. Faller, 2001). A key element in the design of the EduPark programme was the application of psychological principles to help participants achieve these goals. In particular, participants learned to adapt their cognitions (thoughts) and behaviours to the changes in their lives brought about by the development of PD. Parkinson’s disease does not manifest itself as a single symptom but rather creates a great variety of symptoms – both physical and psychological – some of which are more pronounced than others, depending on the individual. Medical interventions, including pharmacotherapy and neurosurgery, greatly improve the outlook for people with PD, but are still only effective for some of the symptoms, some of the time. Thus, the need for patient education and non-medical psychosocial interventions is clear (Ellgring et al., 1990; Oertel & Ellgring, 1995; Mohr et al., 1996; Macht et al., 2005). Specifically: •

People with PD benefit from learning to manage the emotional and behavioural stresses of the disease and from learning to adjust in a positive way to life with the disease. • Developing and expanding social skills enables people with PD to communicate about their disease with others and to compensate for reduced emotional expression. • Carers benefit from learning to manage their own experience of distress related to PD, and from acquiring/enhancing social skills to improve interactions with the person they care for. The EduPark programme was developed around these three domains of psychosocial interventions, following the European Union’s Quality of Life and Management of Living Resources research framework. This framework adopted the bio-psycho-social model from 5

Patient Education for People with PD and their Carers Health condition (disorder or disease)

Body Functions & Structure

Activity

Environmental Factors

Participation

Personal Factors

Health Condition: Parkinson’s Disease

Body Structure - Brain

Body Function - Movement-related Functions - Mental Functions - Others (Vegetative Functions e.g., bladder, skin)

Activity Mobility Self-Care Domestic Life Communication General Demands (Handling Stress)

Education

Participation Interpersonal Interactions and Relationships Work and Employment Community Life Recreation / Leisure

Environmental Factors

Personal Factors

Support and Relationships

Age Gender Lifestyle Habits

- Family (Partner) - Friends, colleagues - Strangers - Health professionals

Figure 1.1 Outline of the bio-psycho-social model and its application to PD (the shaded areas indicate those factors that the education programme is designed to target)

the International Classification of Functioning, Disabilities, and Health (ICF), as set by the World Health Organization (WHO, 2000). Figure 1.1 shows the bio-psycho-social model, as well as how the manifestation of PD can be characterised according to the ICF. Firstly, PD is associated with impairments of the body, specifically, neuronal degeneration leading to dopamine depletion. These changes give rise to impairment of body functions, primarily those of movement, but also including other physical and psychological functions. The EduPark programme was designed to improve participants’ ability to cope with these symptoms and problems. Secondly, people with PD generally experience limitations in activity, primarily related to their movement symptoms, such as problems with mobility, self-care and communication abilities. Because stressful situations appear to increase the likelihood that people with PD 6

The Nature of Parkinson’s Disease

will experience difficulties in all of these areas, stress management was incorporated into the programme. Thirdly, people with PD experience restrictions in their participation in everyday life. For example, people with PD who are still employed may experience social and performance restrictions in relation to their jobs that are unlike problems they may have had in the past. Therefore, learning alternative ways of dealing with such issues, such as improving selfassertion skills, is another target of the programme. Fourthly, environmental factors, especially features of the social environment, play a crucial role in PD and the way people deal with it. The carer is often, or often becomes, the primary partner for social interaction during the course of the disease and therefore plays a vital role in the social network of the person with PD. The programme thus addresses the needs and problems of carers as well as those of people with PD. The fifth element of the model includes personal factors such as age, gender and lifestyle. These factors have a strong influence on how PD affects each individual and the way the person and the environment (including the carer) deal with the PD. In the remainder of this introductory chapter, we provide additional details about the nature of physical and psychological manifestations of PD, together with information on the incidence, diagnosis and treatment of PD, and a brief description of psychosocial interventions.

Epidemiology James Parkinson first described the symptoms of PD in his “Essay on the Shaking Palsy” in 1817. The most common form of PD and Parkinson-related disorders is referred to as “idiopathic”, meaning that it has no known cause. Parkinson’s disease is usually described as a slowly progressive neurodegenerative disorder occurring in later life (over 65 years of age), although it is also seen in younger people, with 10 % of cases observed in people under the age of 50. It is one of the most common neurodegenerative diseases throughout the world, with about four million people diagnosed worldwide. In epidemiological surveys, the ageadjusted prevalence rates range from 18 to 207 per 100,000 people, and the annual incidence rates vary from 4.5 to 21 per 100,000 person years. Throughout Europe, 1.6 of every 1,000 people over the age of 65 are currently affected by PD and the incidence is expected to rise as the percentage of older people within the population increases. Parkinson’s disease is observed in all countries, all ethnic groups and all socio-economic classes. Demographic factors such as age, gender and race appear to influence the risk of developing PD, however. Due to the advanced age of many patients, the disease lasts on average between 10 and 20 years although younger patients will live with the disease for much longer.

Neuropathology Parkinson’s disease is characterised by a loss of pigmented neurons, most prominently in the substantia nigra and locus coeruleus. The loss of these nerve cells, which produce the neurotransmitter dopamine, results in a dopamine deficiency. Although the cause of neuronal degeneration is unknown, many researchers now believe that PD may result from the interaction of several factors including genetic predisposition and exogenous toxins. 7

Patient Education for People with PD and their Carers

Motor symptoms and other clinical features The cardinal features of PD are tremor, rigidity, bradykinesia/akinesia (slowness and difficulty in initiating and executing movements) and postural reflex impairment. Parkinsonian tremor, the dominant feature for many people with PD, is worse at rest and is often unilateral. Bradykinesia is generally the most disabling motor symptom of PD. Cogwheel rigidity causes muscular stiffness. Impaired postural reflexes and “freezing” (sudden inability to move) appear in advanced PD, and may cause loss of balance and falls (Sudre, Jacquement, Uldry & Perneger, 1999). Motor impairments can affect many activities of daily living, such as eating, drinking and self-care. Typical clinical features also include loss of associated movements, facial hypomimia (lack of facial expression), lack of gestures, speech disturbances and reduced vocal prosody, gait disturbances, sleep disturbances, sexual dysfunction and autonomic dysfunction (Cohen & Lazarus, 1979; Engel, 1980; Smith & Nicassio, 1995; Martinez-Martin, 1998; De Rijk et al., 1999; Ellgring, 1999). The rate and degree of these impairments vary considerably between and within individuals and can fluctuate considerably in short periods of time. In addition, perceptual and cognitive deficits including visuo-cognitive impairment and bradyphrenia (slowness of thinking), have been recognised as possible non-motor manifestations of PD, while dementia can be found in a smaller percentage of people with PD.

Diagnosis and clinical course Parkinson’s disease usually begins insidiously and the first symptoms may be non-specific: fatigue, malaise or personality changes may appear before the first motor signs. Difficulties with handwriting, or the inability to undertake repetitive sequential tasks such as cleaning the teeth, winding a watch, doing up buttons or manipulating spoons may be the sole complaints for many months. Another possible first indication of PD can be depression, which can predate the physical features. The disease develops progressively and causes increasing disability over the years. A firm diagnosis of PD can usually be given if at least two major symptoms are present. However, diagnosis can sometimes be difficult, particularly early in the disease when the symptoms and signs may be subtle. The most common conditions misdiagnosed as PD are essential tremor, atypical neurodegenerative parkinsonian disorders early in their disease course (including progressive supranuclear palsy, multiple system atrophy, corticobasal degeneration, and dementia with Lewy bodies), secondary forms of parkinsonism caused by neuroleptics and other antidopaminergic agents, strokes in the nigrostriatal system, or other subcortical or frontal pathologies. The diagnostic criteria for disorders sharing the clinical signs of deficient nigrostriatal dopamine function have been substantially refined in recent years. After the diagnosis of PD has been made, important questions about disease management arise. Decisions require an open discussion of prognosis, options for treatment, and the personal philosophy of those with PD and their carers. Even though a cure has not yet been found, life expectancy is now close to normal and the main issue is how to maintain the best possible quality of life.

Medical treatment The primary medical treatment for PD is pharmacological and includes drugs designed to slow disease progression, as well as drugs to treat motor and non-motor symptoms and complications 8

The Nature of Parkinson’s Disease

(levodopa, dopamine agonists, selegiline, amantadine, COMT-inhibitors and anticholinergics). Treatment of PD is complex due to the progressive nature of the disease and the side effects associated with therapeutic interventions. Although levodopa is the most effective antiparkinsonian drug and can often provide benefit throughout the entire course of the disease, it can also cause long-term difficulties, including motor complications (dyskinesias and on-off fluctuations) and psychiatric side effects (hallucinations and confusion). Recent advances have identified non-dopaminergic transmitter systems as potential therapeutic targets in PD. Surgical interventions, such as pallidotomy, pallidal stimulation, or subthalamic nucleus stimulation, may be indicated for patients with advanced disease and motor complications. Thalamotomy and thalamic deep-brain stimulation are sometimes recommended for patients whose tremor is insufficiently controlled by medications.

Psychological aspects of PD Parkinson’s disease is characterised by an interaction of biological, psychological and social factors, all of which can impact the quality of life for people with PD. Many people with PD experience emotional problems such as depression, lack of motivation, social anxiety and difficulty coping with stress. Psychological stress in PD can arise from various sources. Stress related to physical symptoms is the most evident, as a loss of voluntary control over movement can provoke negative emotional states such as anger, fear and frustration. In addition, the relentless nature of symptoms means that there may rarely be a moment when a person with PD can forget the disease, whether he or she is alone or in the presence of friends. Stress can also arise from threats to self-image, as important personal goals may no longer be achievable due to limitations caused by the disease. Maintaining a positive self-image can become especially difficult when normal activities at work and at home are affected. Keeping an emotional equilibrium may require actively looking for positive experiences and positive activities. A psychological increase in symptoms refers to the fact that minor stressors may often lead to an immediate increase in trembling, immobility or other PD-related symptoms. There are very few diseases where the interaction between psychological factors and the intensity of symptoms is so immediate and intense. Uncontrollable fluctuations in the efficacy of medication and in the occurrence of symptoms are a further major concern to people with PD. These fluctuations can occur when least expected. Moreover, relatives, friends and other people in the social environment may sometimes receive the false impression that the person with PD is simply unwilling to do things within his or her capability because he or she can be functioning fine one minute but need help with simple tasks the next. Symptoms of PD can also be influenced by expectations about the effectiveness of a certain treatment, as was shown by McRae, Diem, Vo, O’Brien & Seeberger (2000) in the case of a neural transplantation study. Observed changes in motor symptoms one year after foetal transplant surgery were dependent not on whether the patients had actually undergone transplant surgery (versus placebo surgery) but rather on whether or not they believed they had received the real transplantation. This was true for self-ratings by the patients as well as for staff ratings. This study illustrates the power of psychological factors over PD symptoms, which can work in both directions – positive as well as negative. Many of the symptoms of PD have a social presence, meaning that these symptoms are visible and can occur in public, unlike “private” diseases such as diabetes. Motor symptoms 9

Patient Education for People with PD and their Carers

can elicit immediate reactions from observers. Although the sensation of being observed can be based on real behaviour of people in the social environment, people with PD may also feel that they are being observed even when they are not. The person with PD may start to be treated “differently” in his or her social environment and may become overwhelmed or anxious in a group of people. Thus, social anxiety can be regarded as one of the secondary symptoms that can develop in PD as an indirect consequence of the motor symptoms. Interpersonal interactions may also be disrupted by slowed cognitive functioning (Sanes, 1985). Frequently, a dissociation between feelings (the subjective experience of emotions) and facial and vocal expression can occur in PD, with the potential to further disrupt social interactions. People with PD may be experiencing the same intensity of emotions as before but may no longer be able to express those feelings appropriately. This dissociation can give the false impression that people with PD are not interested or involved in interactions. Relatives may complain that they cannot tell whether the person with PD is happy or angry because of the lack of expression in voice, body and face. From this deficit, communication problems between individuals with PD, their relatives, and medical staff can arise (Pentland, Pitcairn, Gray & Riddle, 1987; Simons, Smith Pasqualini, Reddy & Wood, 2004). Preserving satisfying relationships may become difficult if friends are put off by new and challenging situations. On the other hand, those friends who stay may become even more valued and important.

Coping with PD In general, any illness can result in problems that require new ways of coping (Cohen & Lazarus, 1979), as well as tolerating and adjusting to negative events and realities. Changing difficult environmental conditions may be necessary – for example, reducing workload, adapting living quarters or choosing easy-to-wear clothes. Parkinson’s disease is progressive so people typically experience different phases as the disease advances. Each of these phases requires specific coping strategies. In the first phase, often prior to receiving the diagnosis of PD, the need for information predominates. During this phase there is often uncertainty about the meaning of bodily sensations and motor difficulties. Although receiving a diagnosis of PD can be a major shock, many people report that having the diagnosis confirmed and receiving clear information provide some relief from the uncertainty experienced earlier on. Following diagnosis, intense fluctuations in emotions may occur, including feelings of denial, hope and despair. A major task at this point is to restructure and reassess one’s personal situation. Distancing (detaching oneself from the stressful situation, for instance, by not thinking about it) can sometimes be helpful. Psychological reassurance and social support are very important at this stage. During the early phases, medication is often effective in providing good symptom relief (“drug honeymoon”). This is the most encouraging stage in the course of PD. Many people report entering a new and different phase of life in which they engage in rational problem solving, adjusting their schedules and actively enjoying leisure activities. Others, however, may withdraw socially, fearing negative evaluations by others when symptoms appear. When medication starts losing effectiveness, resulting in worsening symptoms as well as increasing side effects, disappointment may set in. During this phase, those people who confront and then accept the situation without denying the worsening of symptoms do best. They look for alternative activities and hobbies and work to maintain social contacts. On the 10

The Nature of Parkinson’s Disease

other hand, those people who in this stage engage in cognitive avoidance strategies such as “wishful thinking” may delay making adaptive changes. As PD symptoms continue to progress, additional means of compensating for impairments may be needed. The severity of physical symptoms is a major factor in determining how much compensation is possible but individuals with similar physical impairments differ greatly in functional ability. Coping abilities through all stages of PD may be enhanced through psychosocial interventions. In particular, established cognitive-behavioural intervention strategies, including systematic relaxation training, cognitive restructuring, situational behavioural analysis and training in social skills, can be adapted to address the problems of people with PD. Several of these techniques are included in the EduPark programme.

Special needs of PD carers Psychological support is needed not only for the benefit of the person with PD but also for the benefit of relatives/friends/carers. Many people with PD live with and/or are cared for by family members at home, who are often about the same age as the patients. As part of the general decrease in activities for people with PD, social activities and relationships may be reduced or even lost for the person with PD and the carer. The carer is at high risk for suffering from emotional distress and for encountering problems interacting with the person with PD. The demands of caring for and/or living with a person with PD can easily exceed family members’ coping mechanisms and affect the psychological, social and physical wellbeing of everyone involved. Carers need a systematic source of information about the disease and may benefit from learning ways to cope with difficult situations encountered while caring for and living with a person with PD. Successful prevention of physical and psychological overload in carers may be achieved through the introduction of psychosocial support designed especially for them. Thus, in addition to the need to improve the management of the illness for people with PD, there is an equally pressing need to promote healthy and independent ageing for the carer despite the presence of the disabling disease of the spouse.

A multidisciplinary, patient/carer-centred approach To provide optimal care for people with PD and their carers, many different healthcare professionals must work together, including the person with PD and the carer as key members of the treatment team. Rather than working to suppress individual symptoms, the aim of multidisciplinary management of the disease is to improve quality of life in all areas. The introduction of psychosocial treatment into the healthcare of PD offers significant prospects for maintaining or increasing patients’ and carers’ activities and participation in social life.

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Chapter 2: Structure of the Programme and Guidelines for Leaders The EduPark Consortium

Patient Education for People with Parkinson's Disease and their Carers: A Manual. Edited by Marcia Smith Pasqualini and Gwenda Simons. Copyright © 2006 John Wiley & Sons, Ltd.

Structure of the Programme

In this chapter we explain the basic structure and key components of the EduPark programme and provide practical guidelines and tips about how to lead groups. The EduPark patient education programme is designed to be carried out in 8 sessions, each 90 minutes long, with separate groups for people with PD and for carers. Professional or trained volunteer group leaders, who have had experience using the instructions and materials in this manual, should conduct the sessions. As already described, people with PD are affected by psychosocial as well as physical symptoms (Ellgring et al., 1990; Peto, Jenkinson, Fitzpatrick & Greenhall, 1995; Mohr et al., 1996; Damiano, Snyder, Strausser & Willian, 1999; Karlsen, Tandberg, Arsland & Larsen, 2000; Schrag, Jahanshahi & Quinn, 2000; Chrischilles, Rubenstein, Voelker, Wallace & Rodnitzky, 2002; Spliethoff-Kamminga, Zwinderman, Springer & Roos, 2003a, 2003b). Within the psychosocial domain, two major clusters of difficulties have been identified: those related to psychological distress, and those related to social impact (Macht et al., 2005). For this reason, key components of the education programme address both of these types of psychosocial problems. For example, sessions in which participants learn about stress management and management of depression and anxiety target psychological impact, whereas sessions about social competence and social support target social impact. Techniques for finding information about PD, promoting healthy behaviour by increasing pleasant activities and selfmonitoring are included in order to enhance basic self-management skills. Many aspects of the programme are derived from principles of cognitive-behavioural therapy, with the idea that changing unhelpful thoughts and behaviours can improve quality of life. The programme is not only for people with PD, however; it is also for their carers – a population whose unique needs are often overlooked. Therefore, separate content is provided for several of the sessions (for example, how to keep caring from becoming a “burden”) in order to address their needs.

Structure of the programme The programme comprises seven key components: 1.

Information. The Information key component provides basic information about PD, as well as how to obtain additional information. It includes an overview of the entire programme. 2. Self-Monitoring. Self-Monitoring is taught as a basic skill to be used throughout the programme. Although PD symptoms may vary tremendously and thus often appear to be unpredictable, people with PD can learn to record information about external and internal events that may reveal links with their physical and emotional states. Similarly, carers can learn how care-related events may be linked to their own emotional experiences. 3. Pleasant Activities. The Pleasant Activities component directs attention to positive aspects of wellbeing, and how wellbeing can be improved through an increase in pleasant activities. 4. Stress Management. Stress Management training enables participants to learn how to identify potential stressors and cope with stress. This training is important for people with PD, because physical symptoms may be exacerbated by stressful situations. It is also important for carers, who often face an exponential increase in potential stressors themselves. 15

Patient Education for People with PD and their Carers

5.

Anxiety and Depression/The Carer’s Challenge. The goal of the Anxiety and Depression component is to educate participants about the importance of cognitions in managing feelings of depression and anxiety. For carers, this key component deals specifically with the “carer’s challenge” – how to manage caring responsibilities so that they do not become a burden. 6. Social Competence. The main objective of the Social Competence key component is to teach participants how to deal with difficult social situations, such as telling other people about the disease or being seen in public. 7. Social Support. The final key component addresses the importance of Social Support for people with PD and for carers. Various ways to seek social support actively are discussed.

The complete education programme covers these components plus a final summary session, for a total of eight sessions. Figure 2.1 shows the structure of the programme, the key components, and the corresponding sessions. Although one key component forms the basis of each specific session, essential elements of each component are continued in the next session, as indicated by the different shades in the figure. The programme may be modified, so that individual components are given more or less attention. Specific contents of the sessions are described in detail within the chapters of the manual.

You’re the leader! Throughout the rest of this chapter, and the rest of the manual, we will refer to “you” as the group leader in order to simplify the written instructions. (If you’re not the leader, no problem – we hope you will still find the information helpful.)

Education programme for people with PD Session 1

Session 2

Session 3

Session 4

Session 5

Session 6

Session 7

Session 8

Information

SelfMonitoring

Pleasant Activities

Stress Management

Anxiety and Depression

Social Competence

Social Support

Summary

Education programme for carers Session 1

Session 2

Session 3

Session 4

Session 5

Session 6

Session 7

Session 8

Information

SelfMonitoring

Pleasant Activities

Stress Management

Carer’s Challenge

Social Competence

Social Support

Summary

Figure 2.1 The different sessions of the EduPark education programme

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Structure of the Programme

Elements within a session As can be seen in Figure 2.2, each session has the same structure: 1.

Overview. Each session starts with an overview, during which you (the group leader) briefly describe the agenda for the session. 2. Homework discussion. During this part of the session, participants discuss the previous session’s homework, which is used to reinforce application of the material between sessions. You can address any questions or problems participants encountered when completing the homework. 3. Active Information. Active Information refers to the idea that participants are asked to become actively involved in the exploration of the topic, rather than simply to sit back and listen to a lecture. You can begin this part of the session by asking participants openended questions, with the goal of increasing the motivation and interest of the group as well as helping you to assess participants’ current beliefs and level of understanding. The contents included in the manual under Active Information are meant to be used as a

Elements of a session

Overview

Orientation by the group leader

Homework discussion

Participants discuss homework from the previous session

Active Information

Information about this component (refer to preparatory activities)

Exercises

Exercises and homework to practise skills and apply knowledge learnt in the current

Homework

session

Appetiser

Activities to be done at home to prepare for the next session

Materials

Figure 2.2 Overview of the elements of a typical EduPark session

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Patient Education for People with PD and their Carers

guide. However, it is important for you to adapt this information to the level of knowledge and capabilities of the participants. In general, simple and easily understood language should be used. If technical words cannot be avoided, their meaning should be carefully explained. As a visual aid for participants, key points of this section can be presented using a flip chart, blackboard, whiteboard, overhead transparencies, slides or a multimedia projector (hereafter, we will primarily refer to a “flip chart”, which was the usual medium used by the consortium). The manual contains guidelines and illustrative examples that can be presented to the group visually or verbally (for example, by having participants volunteer to read examples). You can decide whether or not to use visual supports, depending on the resources available and your own experience in using this type of material. After new information is presented, it is often useful to ask participants if they have understood the material, and to elicit their opinions, noting their comments on the flip chart. Such a discussion can be useful for addressing concerns of group members. 4. Exercise. The Exercise is a practical task related to the session topic. The goal of each exercise is to help participants apply the information they have just heard about and discussed during the Active Information part of the session. Exercises are designed to facilitate active participation and interactions between group members. You are responsible for eliciting the participation of all members of the group, to whatever degree individuals feel comfortable. An additional aim of the exercises is to encourage reflection and discussion of the session topics. In our experience, most groups engage in lively discussions and your primary role is to encourage and moderate the debate. The exercises help participants learn how their own experiences relate to the session topic. Through mutual support and peer learning, they learn to generate new solutions to their problems, supporting the objective of broadening knowledge and encouraging healthy attitudes and behaviour. If an alternative or additional exercise is needed, one possibility is for participants to engage in small group discussions of questions that were raised previously in the session. Groups of three or four people write down their opinions, comments or suggestions (with help if they have difficulty writing) and present them to the rest of the group for discussion. You can note their comments on a flip chart, helping to summarise and synthesise the information. 5. Homework. The aim of the Homework is to help participants apply the concepts explored during the session to their daily lives. You should encourage participants to do the homework, and reinforce their efforts. However, completion of the homework should not be considered compulsory. Some participants may comment that the situations presented in the homework are not applicable to their own lives at the present time. In these cases, the material can be presented as an aid for the future while emphasising that the situations and problems that are brought up may never occur. 6. Appetiser. Most sessions often end with an Appetiser, during which you preview the topic of the next session. For some sessions, participants are asked to prepare for the next session by performing a small task. For example, in preparation for the Self-Monitoring session they are asked to think about the times they have kept some form of diary.

Choosing options to fit the group It is important to adapt the sessions to fit the group’s capabilities and needs, taking into account factors such as speech and language ability, handwriting ability, capacity for introspection and 18

Structure of the Programme

cognitive level. Therefore, two different options are offered for Sessions 4, 5 and 6: a more advanced option that focuses on cognitive strategies (Option 1), and a more basic option that focuses on behavioural strategies (Option 2). Depending on the characteristics of the group, and time constraints, information and exercises from both options can be included. In addition, several of the sessions suggest smaller variations in procedure for particular aspects of the sessions, to better target participants’ needs. Assessment instruments Many different assessment instruments have been developed to assess physical and psychological functioning in people with PD and in carers. Several of these instruments were used during the development and preliminary evaluation of the EduPark Patient Education programme. (These scales are listed and described in the appendix.) We recommend that you use measures such as these to help you evaluate the effectiveness of the programme. In addition, an Evaluation Questionnaire is included as part of the last session (Session 8) as a means of eliciting standardised feedback from participants about the programme.

Practical recommendations for leading the group Here are some practical recommendations and hints to help you to organise the programme and to anticipate and deal with situations that may arise. The group leader The sessions of the education programme are interconnected so the group will usually run more smoothly if the same primary group leader is present for all of the sessions. For participants to achieve maximal benefit from the group, you should be sufficiently acquainted with the medical and psychological manifestations of PD to be able to address core issues. Basic information is contained in this manual, both in the introduction and within individual sessions. In addition, the reference section at the end of the manual should help you identify sources for further reading. If desired, outside professionals may be invited to participate in specific sessions, particularly when specialist knowledge may be useful. For example, a neurologist might be invited for the Information session to explain neurological changes that occur with PD, or a social worker might be invited for the Social Support session. The group will run much more smoothly if you first read through the entire manual to have a feel for the programme and then review the details of each session carefully. Once the group is about to commence you will want to pay particular attention to choosing which options (where available) are most appropriate for the types of participants you will have in each group.

Preparation⁄forming the groups Separate groups for carers. We strongly recommend running the programme separately for people with PD and carers. For this reason, separate session content has been 19

Patient Education for People with PD and their Carers

described for people with PD and for carers, although the content overlaps significantly. (Note that for Sessions 4, 5 and 6 the sessions are written entirely separately for people with PD and carers, whereas for other sessions differences are noted within the sessions.) In our experience, participants in both groups seem to benefit more if they are in a group with information geared towards their specific needs. Psychological considerations may play a role as well. For example, many carers may not be willing to talk about the effects of PD on themselves in front of the person who has PD; many people with PD may feel they cannot “keep up the pace” in a group that includes carers and so may choose to remain silent. People with PD often rely on their carers for transportation, so it can be useful to schedule the separate sessions for the same time period, if two leaders (and separate space) are available. If desired, joint “tea breaks” can be scheduled, allowing the participants in the two groups to interact socially. How big should the groups be? Groups for people with PD may need to be kept relatively small (three to seven people) as many of the session activities can take relatively longer to complete due to participants’ motor slowness. Having a small group will enable each person to participate fully. Carer groups, however, can usually be somewhat larger and still be effective. In some cases, it may be better to assign people with PD/carers into groups on the basis of severity of disease (for example, having a group only for people with newly diagnosed PD, or only with advanced PD), or on the basis of age. How often should you meet? We have found that meeting once per week suits most participants. However, the programme can be adapted for use with shorter time spans, if the programme needs to be completed more quickly. For example, if people must travel long distances to attend the group it is possible to hold sessions daily so that the programme can be completed within a week. In this case, you may want to simplify the homework assignments. Seating arrangement. Seating the participants in a semicircle promotes eye contact and encourages members of the group to participate. This arrangement may be modified depending on the specific activities planned for the session. Extra materials. You may find it helpful to provide extra materials, such as brochures about PD-related topics, for participants to bring home. Many participants appreciate such information, which they can share with friends and relatives who are not part of the group. In the United Kingdom, the Parkinson’s Disease Society has material available on many relevant topics. Group rules. During the first session, you may want to propose “group rules”, subject to the agreement of all participants, which can be written on a flip chart. Some suggested rules are: • Each participant should try to attend every session and to arrive on time so that the session can begin punctually. If a participant is unable to attend, or will need to arrive late or depart early, he or she should try to alert you in advance. • Mobile phones should be silent while the group is in session. • Confidentiality is important. When participants discuss living with PD they often bring up sensitive issues. Although each participant can choose how much to disclose, participants need to feel confident that any personal information they disclose will stay in the group. When talking about the programme to other people, participants

20

Structure of the Programme

can talk about what you as leader have said and what they have experienced personally, but they should not disclose personal information about any of the other participants. • The sessions are time limited so participants should try to keep their comments brief and to the point so that everyone has a chance to speak. • Only one participant should speak at a time. You should ensure that everybody has the time and opportunity to contribute to the discussions.

Creating a good atmosphere Relax! The sessions work best when the atmosphere is relaxed, with encouragement for each member to participate in his or her own way. You may want to spend a little extra time during the first session to create a congenial atmosphere, for example by giving the participants time to introduce themselves to one another, to express their reasons for participating and to describe their expectations. Encourage participation. You may find it useful to give some basic advice to the group, such as encouraging everyone to participate actively during the sessions and to listen attentively and empathetically when other participants are speaking. Describe the session as a time when people can freely express and share feelings, knowledge and opinions. Stress that there are no right or wrong answers: participants will have different opinions and experiences that are all equally valid. Take a break. Participants usually appreciate having time to chat about informal matters (personal questions, matters not related to the set topic) and this informal conversation can facilitate group cohesion. Depending on the group, this time could be upon arrival, midsession (for example, during a tea break), or at the end of the session. Summarise. Periodically summarise the information discussed so far, showing how different components within a session are connected and how different sessions relate to the overall goals of the programme. These summaries will help participants to stay motivated and on task. Adjust the focus/level. If particular topics or exercises are not appropriate for the group then adjust the focus and/or level. For example, some participants find that practical examples are most useful and comprehend more easily when discussing their own experiences rather than learning about theory. If a topic does not seem appropriate at all for a particular group (for example, carers with newly diagnosed partners discussing “burden of care” before they have experienced it) you can ask for or suggest a topic that might be more appropriate. For every session, you should try to adapt your tempo and language to those of the participants. Manage the time. The timing and duration of the sessions should ideally be the same for all sessions. We have found it helpful to ask participants to reserve two hours per session as it is better to have extra time than to run over. However, carer groups normally proceed at a faster pace, so a session length of 90 minutes might be adequate for them. You should normally stick to the time schedule whenever possible. If the participants are very talkative and want to share experiences that are not directly relevant to the current topic, encourage them to arrange an additional meeting outside of the normal programme time, in which they can talk freely about any topic they choose.

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Patient Education for People with PD and their Carers

Leading discussions If a participant is very talkative, interrupt in a friendly manner and say something like “although we would like to hear more, because of our tight schedule we better move on.” If a participant wanders completely away from the topic, ask the participant a question related to the day’s theme, or suggest that the person stay after the session to discuss the issue in more detail. If a participant asks too many questions, answer the questions very briefly and focus on where to find more information. If you do not know the answer, admit it openly, and offer suggestions about possible sources of information. If the question refers to a topic that will be covered in a later session, defer discussion until then. If a participant is very quiet, you can encourage participation with questions such as: • How does this sound to you? • Was that familiar to you? Was it something new? • Was there something that surprised you? • Do you have any examples of your own? You can reiterate that there are no right or wrong answers and that sharing of personal experiences is valuable. Some participants, however, simply prefer to listen, which is perfectly acceptable. Every now and then you may want to direct a question to them personally. If a participant questions the usefulness of the programme, listen carefully to why he or she is not satisfied, and indicate that the message has been heard. If the participant’s expectations are unrealistic you may need to emphasise that the education programme will not work miracles. The programme involves taking the time and effort to look at one’s own life from different perspectives and to try out new, quite small ways of doing things, or familiar but forgotten behaviours. We believe that the programme is useful and worth the effort but it is very much up to each individual how much he or she is willing to engage in the programme and therefore how much he or she is likely to benefit. If a participant clearly expects or needs something other than what the education programme can offer, try to provide information about other opportunities or assistance available. If a participant questions your competence, listen carefully to what the participant says, indicate that the message has been heard and thank him or her for the feedback. You can emphasise that the most valuable element of the programme is the interactions participants have with each other because they are the true experts on the disease and their situation. Your role is primarily to keep the sessions on track and to offer the opportunity for participants to discuss and learn something new. If you believe that the criticism is not justified, you may need to just accept that opinion and not let it interfere with the programme. If you believe that the criticism could be justified, however, take steps to improve the situation for the current group and think about what you could do differently in the future. In all cases, strive to maintain a friendly and professional attitude towards all participants, regardless of their opinions. Conducting the exercises If participants are reluctant to participate in certain exercises (for example, the role plays), don’t give up too easily. Although you need to be flexible, sometimes participants benefit 22

Structure of the Programme

most from doing things that they would not have chosen to do themselves if asked. You may need to repeat that there are no right or wrong ways of doing the exercises, and no specific skills required, whilst encouraging participants to at least try the exercises and reinforcing even small successes. Emphasise that the group is a secure environment in which to experiment, because everyone knows it is only an exercise. If the participants really are not willing to do something or if it does not work, try something else! You can be a role model, showing that not succeeding (or even not trying) is not the end of the world. Try to maintain a positive attitude and a sense of humour about your own mistakes.

Discussing homework If participants have not done their homework for a particular session, recognise any efforts they have made (for example, thinking about the last session’s topic, even if they didn’t write anything down). Encourage them to try it out the next time. If they say that they forgot to do the homework, suggest that they reserve a specific time during the week for thinking about the homework. Memory aids may also be useful: for example, leaving the homework sheet in a prominent place. Focus on participants who have completed the homework, asking them about their experiences.

Ending the programme Strive to end the programme in a warm and personal manner. For example, you could hand out symbolic “course diplomas”, encourage participants to exchange contact information (if appropriate), take a group photo, and maybe even plan a “reunion”! Do all you can to motivate the participants to continue to apply the information and skills learnt during the programme to their everyday lives. In addition, participants can provide valuable feedback at the end of the programme, with regard to both programme content and procedures. If possible, the feedback should be collected individually (on forms such as the feedback form included with Session 8, to be completed in the session or sent in later) as well as collectively (for example, as part of a group discussion).

Roadmap for using this manual Each session is described in its own chapter. When the content for people with PD and carers differs, little “bubbles” in the left-hand column indicate this. For Sessions 4, 5 and 6, however, the sessions are described entirely separately because the contents for carers and people with PD are so different. Each session starts with an overview, including a timeline to indicate roughly how much time we suggest spending on each section (assuming a 90-minute session). The session description tells you what to do in each particular part of a session. The separate sections are clearly indicated with specific symbols: 23

Patient Education for People with PD and their Carers

Discuss homework (previous session) Active information

Exercise

Homework

Appetiser (following session)

All materials used in a specific session (such as handouts and slides) are included at the end of each session description. The titles of handouts are written in bold. Words in italics within the session description indicate suggested text for you to say directly to the participants, although you are free to vary the text to fit the group and your own personal style.

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PART II: PROGRAMME SESSIONS

Session 1: Information Pille Taba, Ülle Krikmann and Eve Kanarik

Patient Education for People with Parkinson's Disease and their Carers: A Manual. Edited by Marcia Smith Pasqualini and Gwenda Simons. Copyright © 2006 John Wiley & Sons, Ltd.

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Session 1: Information

Session 1: Information Overview The overall aims of this session are for participants to learn about the programme and each other and to learn how to seek PD-related information. Participants meet one another, establish group rules and discuss expectations. Information on the EduPark programme is presented and the structure of the sessions is explained. Essential knowledge about PD is provided, and participants’ learning experiences are explored. Suggestions about how to find information are presented, and skills for asking questions are then practised within the session. This practice is continued at home.

Materials ❏ ❏ ❏ ❏

Schedule of the programme Slides and projector, with printouts of slides to use as handouts Relevant handouts Flip chart, markers, pens for participants Part

The group leaders and participants introduce themselves, group rules are established, and participants’ expectations are discussed. General information about the programme, objectives, key components and time schedule of the sessions, is given.

Up to 0:30’

Active Information Seeking information

Discussion about the need for information about PD. Suggestions for finding information. (Optional) Essential information: What is PD?

Up to 0:50’

Exercise Seeking information

Guided discussion: How to find information. How to overcome possible barriers. How to participate in decision making.

Up to 1:20’

Homework Seeking information

Option 1: Draft questions for a visit to professionals. Option 2: Use these questions when contacting or visiting a specialist.

Meeting each other/Overview 1

2

3

4

5

Contents

Appetiser Self-Monitoring

Up to 1:30’

Past experiences of keeping a diary/ journal.

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Patient Education for People with PD and their Carers

Part 1 Introduction to the Programme

0:30’

Goals: • To help participants become acquainted with each other. • To establish group rules. • To discuss participants’ expectations. • To provide general information about the programme, including objectives, key components and time schedule of the sessions.

Contents

Instructions

Self-introductions

Introduce yourself, and then ask the participants to introduce themselves briefly.

Group rules

Suggest rules for the group to follow (for example, switching off mobile phones, keeping personal information confidential, speaking briefly to allow time for others to speak, expressing opinions but not criticising others; see Chapter 2) and ask participants if they would like to adopt these rules. Enquire if there are any additional rules that participants think would be helpful.

Participants’ expectations

Ask participants about their expectations of the programme. Write these expectations on the flip chart and retain them until the end of the entire eight-session programme.

Information about the programme

Group leader: The education programme is based in part on the idea that people can improve the quality of their lives by changing the way they look at things. Research has shown that the way people think about the situation they are in and their ability to deal with it can affect their mood, their health, how much stress they experience and even how well their medications work. Therefore, changing the way you look at things may empower you and increase your feelings of wellbeing, even though you have PD/are caring for someone with PD.

The purpose of the programme

Describe the purpose of the programme: • Acquiring knowledge. • Learning and enhancing skills. • For people with PD, integrating knowledge and skills for self-management of the disease in order to: (a) manage the emotional and behavioural stresses of the disease; and (b) improve the ability to communicate about PD.

Slide 1

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Session 1: Information

• For carers, integrating knowledge and skills in order to: (a) manage distressing consequences of PD; and (b) improve interactions with the person with PD. The components of the programme

Describe the components of the programme:

The structure of the session

Describe the structure of each session (you may want to write the name of each section on the flip chart as you go along):

Session 1: Information – learning about PD and about information searching techniques Session 2: Self-Monitoring – learning skills for self-monitoring and self-management Session 3: Pleasant Activities – learning skills to improve well-being through pleasant activities Session 4: Stress Management – learning skills for managing stress Session 5: Anxiety and Depression – learning skills for managing anxiety and depression/The Carer’s Challenge/To prevent the burden of care Session 6: Social Competence – improving the ability to communicate desires and needs to others Session 7: Social Support – learning how to ask for and give social support Session 8: Summary of the programme

1. Overview: Short description of the session 2. Homework discussion: Discussion of experiences with the homework given in the previous session 3. Active Information: Presentation of information that is essential for the present session 4. Exercise: Practice/discussion of skills that are essential for the present key component 5. Homework for next session: Description of exercises to be completed between sessions to practise skills, and to incorporate knowledge from the current session into daily life 6. Appetiser: A suggestion for something to think about in anticipation of the next topic

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Patient Education for People with PD and their Carers

Part 2 Active Information

0:30’ – 0:50’

Goals: • To discuss participants’ needs for information about PD. • To provide suggestions about how to search for information and how to deal with possible difficulties. • To present essential information about PD (optional).

Contents

Instructions

Information needs:

Ask participants about the kinds of information they have received about PD, problems they have had locating information they need and what additional information they would like, by asking questions such as the following:

Existing information?

What kinds of information have you received in the past?

Enough information?

Have you received enough information for your needs?

Sources of information?

What kinds of information sources have you used?

Problems?

What kinds of problems have you encountered in your search for information?

Additional information?

What kinds of additional information would you like to receive?

Flip Chart Advantages of being informed?

Write on the flip chart what additional information participants report they need. Discuss the advantages of being an informed patient/carer, including how the informed patient/carer can be: • an expert on the disease • a partner on the team • a competent participant in decision making • a person able to cope with the disease Write the main ideas on the flip chart.

Flip Chart

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Possible sources of information? Slide 2

Session 1: Information

Identify possible sources of information: • Face-to-face contact: doctors and other professionals, family and friends, other patients • Written material: books, leaflets, magazines, etc. • Audiovisual information: radio, TV, video, Internet, telephone support • Parkinson’s Disease Society or other support groups, which may provide information, contact with other people who have PD, entertainment, emotional support and social support Emphasise that not all information from different sources is correct information!

Useful sources of PD information

Hand out Useful Sources of PD Information in the United Kingdom, noting that this sheet can provide a good starting point when seeking information but that they will be able to add their own sources.

Guidelines for asking questions

What is the best way to ask for information? Here are some suggestions that may be helpful when asking for information: • prepare your questions before you ask (think about what you need to know) • try to formulate your questions to be as clear and brief as possible • write questions down on paper, in order of importance (most important first) • group questions by topics • write the answers down to make sure you don’t forget them Hand out Guidelines for Asking Questions.

Handouts

Useful Sources of PD Information in the United Kingdom Guidelines for Asking Questions

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Patient Education for People with PD and their Carers

Contents Information about PD:

What is the nature of PD?

How will symptoms change over time?

What is the cause of PD?

Does PD affect mental state?

Can PD be cured?

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Instructions (Optional) Present information according to participants’ needs and interests, stressing that this information is presented as a starting place, and that the focus of this session is on how to search for additional information rather than just answering questions in the session. Parkinson’s disease affects the part of the brain responsible for control of movement. The major clinical features of PD are shaking (resting tremor), slow movements (bradykinesia), stiffness of the arms and legs (rigidity), difficulty in initiating movements and balance problems (postural instability). Initial symptoms may be vague, such as feelings of fatigue or malaise. People with PD frequently experience the first motor signs in subtle ways, such as tremor on one side, mild instability or difficulty writing. It is a very individual condition and affects everyone differently. Symptoms vary from person to person and can change from day to day. Parkinson’s disease generally affects older people, but can also develop in younger people. It occurs throughout the world. Parkinson’s disease usually begins insidiously. Symptoms worsen over time, leading to difficulties with daily activities. With advanced PD, additional symptoms such as urinary and bowel problems, changes in mood, and problems with thinking may develop in addition to the primary motor symptoms. Parkinson’s disease can affect a person’s quality of life but is not life threatening. It develops differently in each individual so treatment is often different for different people. With medication, most people can lead normal lives for years. However, in a small number of people the symptoms can develop more rapidly. In PD there is a loss (or degeneration) of specific cells in the brain that produce dopamine, which is a chemical substance for transmitting nerve impulses, and is particularly important for movement. The main area affected is called the substantia nigra, which is a grey matter structure deep in the brain. The loss of dopamine-producing cells impairs the person’s ability to control movements. We still do not know why PD occurs although several risk factors for development of PD have been suggested. Current theories suggest that PD may result from a combination of genetic susceptibility and environmental toxins. People with PD may experience certain mental symptoms, such as problems with perception and memory, and feelings of depression. Feeling low is a common experience, and many people complain of fatigue. People with PD often experience stress, tension and anxiety. In addition, difficulties with relationships in the family and with social interactions may be experienced. There is no cure yet, but medication can greatly reduce the clinical symptoms.

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What types of medication are available?

How does PD medication work?

Are there sideeffects of the medication on mood and mental state?

What other treatment options are available?

Who should be involved in the care of people living with PD?

Slide 3

Session 1: Information

Almost all people with PD are treated with medication, which as already noted may enable them to lead normal lives for many years. The choice of medication depends on several factors, including age, clinical features, and severity of the disease, as well as accompanying disorders and their treatment. A combination of different medications is often required to provide the most effective symptom control. Because the symptoms of PD are caused by a loss of dopamine, treatment has focused on medication that increases dopamine in the brain: levodopa and dopamine agonists (drugs that act like dopamine). In addition, enzyme inhibitors (MAO-B inhibitors and COMT inhibitors) increase the effects of dopamine by reducing dopamine breakdown in the brain. Some drugs affect other neurotransmitter systems and have an indirect effect on the dopaminergic system (e.g., anticholinergics, amantadine). Although levodopa is the most effective antiparkinsonian drug and provides benefit throughout the entire course of the disease, it can cause long-term difficulties, including motor complications and psychiatric side effects. Long-term levodopa use can be associated with a reduction in symptom control, known as wearing off, and the development of involuntary movements called dyskinesias. Keeping a medication diary helps people manage the fluctuations that require special treatment strategies. The side effects of antiparkinsonian medication may include confusion or memory disturbance. With large doses, some people experience mood swings or hallucinations. Motor fluctuations are sometimes associated with other fluctuating phenomena such as problems with thinking or mood. For people with advanced disease and motor complications who show an inadequate response to medication, surgical intervention may be indicated, such as thalamotomy (used to treat tremor that is resistant to medication), pallidotomy (used to relieve severe involuntary movements), or deep brain stimulation (involves inserting a stimulator into specific areas of the brain to provide electrical impulses). People with PD require long-term monitoring and treatment. During the different stages of the disease, people with PD and carers will probably meet with different health care professionals for the management of different symptoms. These professionals may include a family doctor, specialist doctor, nurse, physiotherapist, occupational therapist, speech therapist, psychologist, dietician, and social worker. The members of the team may differ depending on the resources available. The person with PD and the caregiver are key members of this team. Physiotherapy, occupational therapy and speech therapy are important components in the management of daily activities. Psychosocial support can be helpful in coping with the emotional effects of PD.

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Part 3 Exercise: How to seek information

0:50’ – 1:20’

Goals: • To facilitate participants’ search for information, by suggesting ways to express questions and concerns, and by helping them to prepare a list of questions. • To discuss barriers that might arise when seeking information, and to suggest ideas about how to overcome them. • To discuss patients’ and carers’ roles in making decisions about the management of the disease in order to demonstrate that informed people with PD and carers are experts on their chronic disease and can participate as team members. Contents Step 1: Information search

Flip Chart

Examples

Instructions Ask the participants to describe problems or questions related to PD that they would like to discuss with a specialist. (If possible, use the questions participants asked in the Active Information section). Suggest to participants that they group the questions by topic, and list them in order of importance, ready to be presented to the family doctor, neurologist or other specialist during the next visit. Encourage participants to ask the questions they want to ask and not worry about appearing too bold. During the discussion, write information needs on the flip chart. Ask the participants to write and organise the questions by topic and importance on their Questions for Health Care Professionals sheet. (This is the type of sheet that they could present to professionals during their next visit.) Examples of questions for people in early stages of disease: • Why do I have PD? • Is PD hereditary? • Is it possible to treat PD? Examples of questions for people with advanced PD: • Is surgery a therapeutic option for me? • Can I expect any side effects from my new medication? • Does my diet influence the effectiveness of medication? Examples of questions for carers: • What does the future hold? • What kind of social support is there for people with PD and carers? • Where can I receive psychological support?

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Discussion

Session 1: Information

Discuss how to formulate brief questions in a clear way, and how to remember/retrieve information that is received. Use the handout Guidelines for Asking Questions. Please note: Do not discuss details of the answers to the questions; remain focused on how to ask questions.

Step 2: Managing barriers

Ask each person with PD to suggest barriers that might occur when searching for information, and then ask the group to discuss solutions for overcoming each of these problems. Ask participants about the difficulties they have experienced in the past when trying to gather information and how they managed the situation.

Examples

Possible examples are: • Lack of communication skills (in Session 6, these skills are discussed and practised in more detail) • Lack of interest in gathering information • Unwillingness of people with PD and/or carers to participate in decision making • Difficulty finding information • Mistrust of the doctor • Unwillingness of the person with PD to share their problems • Difficulty accepting help from support groups

Step 3: Decision making

Discuss patients’ and carers’ roles as key members of the treatment team. Acknowledge that there are different opinions about what the roles of people with PD and carers should be in the management of the disease. Stress, however, that many experts now believe that informed patients and carers are experts on the disease and should participate in decision making, especially for chronic diseases. You might want to discuss some or all of the following questions: • Who is an expert? • Who is responsible? • Who makes decisions?

Discussion

At the conclusion, ask participants to discuss their readiness to be a member of the management team. Questions for Health Care Professionals

Handout

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Patient Education for People with PD and their Carers

Part 4 Homework: List of Questions

1:20’ – 1:30’

Goal: • To help participants to seek information more effectively.

Contents

Instructions

Option 1: Draft a list of questions

Instruct participants to draft a new list of questions for a visit to a healthcare professional (using a new copy of the Questions for Healthcare Professionals handout), again grouping questions by relevant professional and topic and listing them in order of importance. They can include questions used in the exercise but add new ones. Tell participants that their lists will be reviewed during the next session, to help them make questions more clear and understandable, if needed.

Option 2: Use the list of questions

Ask participants to use these questions when visiting or contacting a professional. Tell participants that their experiences contacting professionals will be discussed in the next session. Questions for Health Care Professionals

Handout

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Session 1: Information

Part 5 Appetiser: Self-Monitoring Goal: • To help participants become more aware of their own experiences. Contents

Instructions

Experience of keeping a diary

Please think about whether at any time in the past you kept a diary and why you did or did not.

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Session 1: Information Materials ❏

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Schedule of the programme with dates of group meetings (prepared in advance by group leader) Slides/printouts of slides to hand out Useful Sources of PD Information in the United Kingdom – you may want to augment this handout with additional information about support groups, rehabilitation centres, specialists, etc., in your local area Guidelines for Asking Questions Questions for Health Care Professionals (two copies for each participant: one for the exercise, and one for the homework)

Session 1: Information

Useful Sources of PD Information in the United Kingdom Parkinson’s Disease Society (PDS) 215 Vauxhall Bridge Road London SW1V 1EJ National free phone help line: 0808 800 0303 Web site: http://www.parkinsons.org.uk The PDS has books, leaflets, information sheets, videotapes and DVDs on a wide variety of PD-related topics and will send an overview of available information sources upon request. Information for carers: Carer United Kingdom, England (national office) Ruth Pitter House, 20/25 Glasshouse Yard, London EC1A 4JT Tel: 020 7490 8818 Advice Line: 0808 808 7777 Email: [email protected] Additional useful websites: Special Parkinson’s Research Interest Group: http://spring.parkinsons.org.uk European Parkinson’s Disease Association: http://www.epda.eu.com Parkinson’s Disease Nurse Specialist Association: http://www.pdnsa.org.uk

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Guidelines for asking questions To obtain the information you need when asking questions, the following suggestions may be helpful: 1. Prepare your questions before you ask them (think about what you need to know). 2. Formulate questions to be as clear and brief as possible. 3. Write questions down in the order of importance (most important question first). 4. Group questions by topic. 5. Once you hear the answers, write them down to make sure you don’t forget them.

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Session 1: Information

Questions for Health Care Professionals (Exercise and Homework) List your questions in order of importance next to the professional you think is most likely to be able to answer the questions.

Professional

Questions

Family doctor

1. 2. 3. ..

Neurologist

1. 2. 3. ..

Nurse

..

Psychologist Social worker ……………….

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Session 1: Slide 1 Education programme for people with PD and their carers

Education Programme for People with PD and Their Carers

Information

Self-monitoring

Pleasant Activities Stress Management

Management of Anxiety/Depression Social Competence

WHY?

HOW DO I FEEL?

Understanding

WHAT I CAN DO?

Management

Better quality of life

Social Support

WITH WHOM?

Coping

Session 1:

Slide 2 Sources of information

Slide 2

SOURCES OF INFORMATION

• • • • • • • •

Discussion: faceto-face contact physician (GP neurologist, geriatrician, etc.) nurse psychologist physiotherapist social worker speech therapist family and friends other patients/carers

• • • • • • •

Written material books brochures folders leaflets newspapers magazines journals

• • • • • •

Audiovisual information radio TV video DVD telephone helpline internet

PD Society, support groups • conferences • meetings • information events • conversation • printed material • surveys • research studies

Session 1: Slide 3 Team management of Parkinson’s disease

Session 2: Self-Monitoring Gwenda Simons, Marcia Smith Pasqualini and Simon Thompson

Patient Education for People with Parkinson's Disease and their Carers: A Manual. Edited by Marcia Smith Pasqualini and Gwenda Simons. Copyright © 2006 John Wiley & Sons, Ltd. This session Copyright © 2006 University of Portsmouth

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Session 2: Self-Monitoring

Session 2: Self-Monitoring Overview The aim of the session is to help participants learn the techniques and skills necessary to selfmonitor. Participants receive information on self-monitoring (definition, benefits, importance of self-monitoring for people with PD and their carers). Self-monitoring is then explored and practised in a body awareness exercise. The practice of self-monitoring is continued at home (writing in a diary).

Materials ❏ ❏ ❏

Relevant handouts Flip chart, markers, pens for participants Slides and projector (optional)

Part

1

Discuss homework Information

Discussion of experiences with homework from Session 1 (Information)

Up to 0:30’

Active Information Self-monitoring

Definition: What is self-monitoring? Exploration of the different ways that people use self-monitoring Importance of self-monitoring for people with PD and their carers Guidelines: How you can learn to self-monitor

Up to 1:00’

Exercise Body awareness

Exploration of self-monitoring: Using self-monitoring to become aware of your own body, experiences, thoughts and emotions

Up to 1:15’

Homework Diary

Completing self-monitoring diaries daily and/or practising a Body Awareness exercise

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Contents

Appetiser Pleasant Activities

Bringing something pleasant (activity, event, experience or object) to the next session

Up to 1:30’

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Patient Education for People with PD and their Carers

Part 1 Discuss Homework: Information

0:30’

Goal: • To support the application of knowledge and skills from the previous session (Information) in everyday life.

Contents

Instructions

Discuss homework Information

Ask the participants to briefly describe their experiences with the homework given in the previous session (Session 1: Information), which consisted of compiling a list of questions for health care professionals (Option 1) and using the list to ask questions (Option 2).

Option 1

You can use the following questions to guide the discussion: • What were your experiences when compiling a list of questions for professionals? • Did you find this was a useful experience?

Option 2

• How did the person respond? • What kinds of difficulties did you encounter? • What did you do, or could you have done, to overcome these difficulties? If participants experienced problems, you can suggest ways they could be handled, such as: • Ask someone’s help in writing questions down/making phone calls. • Write questions down straight away so that you do not forget them. • Take your time to think through your problems and questions. • Use the handout Guidelines for Asking Questions for help.

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Session 2: Self-Monitoring

Part 2 Active Information: Self-Monitoring

0:30’ – 1:00’

Goals: • To understand what self-monitoring is, why it is important for subjective health and wellbeing, why it is important for people with PD and what the essential skills and techniques for self-monitoring are.

Contents

Instructions

Definition: What is selfmonitoring?

By self-monitoring we simply mean choosing to pay attention to something about yourself and your situation, and keeping track of it.

Examples from the group

Refer to the Appetiser given in Session 1:

Writing down experiences will make it easier to keep track of information and will enable you to see patterns. Some of you may already be doing a form of self-monitoring by keeping a daily diary or journal. Who has kept a diary or journal before? What is/was your reason for doing so, or for not doing so? Write examples from the group on a flip chart.

Flip Chart Example: Smoking

Provide an example of self-monitoring, such as: In an attempt to give up smoking, Mary makes a tick on a chart every time she smokes a cigarette. When she sees how many cigarettes she smokes each day, she starts by reducing the number of cigarettes she smokes and eventually gives up smoking completely. The act of making a note of each cigarette she smokes is a form of self-monitoring: she is paying attention to a certain behaviour (smoking) and keeping track of it.

Exploration: What types of experiences might you selfmonitor?

One type of experience you might choose to pay attention to is something that you are doing, such as how often you smoke a cigarette or wake up at night. A second type of experience you might choose to pay attention to is how you are feeling, for example noticing that you are particularly happy.

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Patient Education for People with PD and their Carers

A third type of experience you might choose to pay attention to is what you are thinking, for example noticing that you are telling yourself that you are doing a good job. Finally, a fourth type of experience you might choose to pay attention to is what is happening around you such as the fact that a family member needs your help. Importance: How can selfmonitoring be useful?

You will continue to use self-monitoring throughout the whole programme. For example, in one session you will be paying attention to a pleasant activity, something you are doing. In another session you will be thinking about a stressful situation, and paying attention to how you are feeling. There are two main reasons why people self-monitor: First, they may want to understand better what is happening. Just by understanding something they may be able to deal with it better. Second, they may want to change what is happening. For example, you might have a specific problem you are trying to deal with, such as trying to lose weight or to get more sleep. Monitoring your eating behaviour might cause you to think twice before you reach for the jar of biscuits; keeping track of the time you go to bed might help you to sleep better. Another possibility may be that you feel stuck in a rut, where every day seems the same and you feel that you are just going through the motions. By keeping track of what’s happening, you may be able to break away from the daily routine.

Examples for people with PD:

Although self-monitoring can be useful for anybody, it can be particularly helpful for people with PD. This is because PD can cause a variety of different problems and symptoms, many of which come and go at different times of the day or week. In addition, PD can produce longer term changes over time. The unpredictability of these problems can make them harder to deal with. Self-monitoring can help you learn to predict when these problems are likely to be better or worse, and may even help you change what you do to increase the amount of time you feel better.

1. Monitoring PD symptoms before going to the doctor

It can be useful to monitor your PD symptoms before going to the doctor. Often it is difficult to remember exactly how your symptoms are changing from day to day, let alone from hour to hour. Keeping track of your symptoms and how medications are affecting them may help your doctor to monitor and improve your medication schedule.

2. Monitoring your feelings

It may also be useful to monitor your feelings. Living with PD can be stressful at times. By keeping track of what factors or situations are present when you feel good, you may be able to increase them (for example, listening to your favourite music while having a bath, or going to the cinema with a friend).

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Examples for carers:

Session 2: Self-Monitoring

Although self-monitoring can be useful for anybody, it can be particularly helpful for people who care for someone with PD. This is because PD can seem very unpredictable. Here are some examples of the sorts of things that you as carers might want to keep track of:

1. Monitoring the times your care is needed the most

It can be helpful to monitor when your care is needed. Perhaps you feel that you’re needed around the clock. Keeping track of the times you actually need to be caring for the person with PD may show that there are periods when you are less likely to be needed, freeing up your time for other activities.

2. Monitoring your feelings

It may also be useful to monitor your feelings. Caring for someone you love can be stressful at times. By keeping track of what factors or situations are present when you feel good, you may be able to increase them (for example, listening to your favourite music while helping with the bath, or going to the cinema with a friend).

Examples from the group

Elicit examples from the group, and write them on the flip chart. Can anyone give another example? What are your own experiences? Any questions?

Flip Chart Guidelines: How can you learn to selfmonitor?

In order for self-monitoring to be useful, you need to do four things: Choose a specific experience. You need to choose a specific experience, behaviour or problem you want to monitor, depending on your goal. The experience should be as clear and specific as possible. People often think they should monitor only problems and negative experiences, as a means of finding solutions for them. However, keeping track of positive experiences, such as pleasant conversations you have, can sometimes be even more useful! Be aware. You must learn to be aware that the experience is occurring. For example, in order to keep track of when you feel content, or when you feel stressed, you first have to be able to recognise those feelings in yourself. Record your experiences. You need a way to help you keep track of your experiences, such as writing in a notebook. However, writing might not appeal to you or might not be feasible, even with help. In that case, you can try other methods, such as making a checklist that you tick when the experience occurs, speaking into a small tape recorder, or using a computer or a typewriter.

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Practise. Self-monitoring is a skill that is acquired through practice. The more you practise the easier and more useful it will become. For instance, the first week or so that you keep track of the effects of your medication you might find it cumbersome and you might forget to do it at times. As time goes by, however, and you start to see a pattern and to understand the medication’s effects, it may become more of a habit and easier to do. Discussion with the group

What do you think about these ideas? Is there anything you don’t understand? Can anyone think of other methods to keep track of your experiences? Information Sheet: Self-Monitoring

Handout

For extra support, you can present the information in this section on slides, or write the main points on the flip chart. The information is also included on the Information Sheet: SelfMonitoring.

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Session 2: Self-Monitoring

Part 3 Exercise: Body Awareness

1:00’ – 1:15’

Goals: • To help participants become more aware of their own bodies. • To show that self-monitoring does not necessarily mean keeping a written record. • To practise self-monitoring in a simple way. Contents

Instructions

Exercise: Body Awareness Note to group leader

This exercise induces a state of profound relaxation in many participants. If such a state is not desirable at this stage of the session the exercise can be moved to the end of the session. The exercise can be expanded to include more specific parts of the body if extra time is available.

Introduction

Self-monitoring is about being aware of your body, your feelings, experiences and behaviours. You can self-monitor any time, any place. To show you one way to become aware of how you are feeling, we will now do a body awareness exercise. Please sit in a comfortable position, and relax. (Pause . . .) The goal of this exercise is to become aware of feelings in your body. Many times people are tightening up their muscles or sitting in an awkward position without even being aware of it. By becoming more aware, you may be able to increase your feelings of relaxation and comfort.

Verbal Instructions

One of the best ways to do that is to notice your breathing. So to start, I would like you to direct your thoughts to your breathing. When you take a breath, think to yourself “in”. (Demonstrate by inhaling.) When you breathe out, think to yourself “out”. (Demonstrate by exhaling.) Now you try it. (Watch the participants breathe in and out a few times and then proceed.) Notice how fast you are breathing. If you are breathing fast, perhaps you can try to slow down, to breathe in a deeper way and relax . . . Do you notice a difference? (Pause . . .) Are you breathing through your mouth or your nose? Does it feel comfortable? Keep breathing, just relaxing and thinking “gently in, gently out”. (Pause . . .)

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Do you notice any changes in the muscles in your shoulders, or your arms? Are they starting to relax? . . . Are there any parts of your body that you feel are tenser than others? Let’s try to reduce tension using your breathing . . . Sometimes by just focusing on keeping your breathing slow and gentle, the muscles will relax . . . What about the muscles in your feet? Do they feel relaxed? Just keep breathing slowly and gently and allow those muscles to relax as well. Think about the muscles in your legs. Keep breathing gently in, and gently out. Think about the muscles in your face. Let them relax gently, too. How do the muscles in your forehead feel? Keep relaxing and be aware of those feelings. Think about the muscles around your eyes; are they relaxed? Keep breathing gently in, gently out. Direct your attention to your mouth. How do those muscles feel? Keep relaxing, gently breathing . . . (If desired, more muscles can be included.) Now direct your attention to the temperature of your body. Do you feel warm, or cold? Think about whether there are any parts of your body that feel warmer or cooler than others. Now focus your attention just on your hands. Do they feel warm or cold? Notice whether they feel the same or different than your legs and feet. Just let yourself become aware of how your body feels, while continuing to breathe gently and slowly. Keep relaxing, breathing gently, in, out, in, out . . . And now, for just a moment, direct your awareness to your thoughts. What are you thinking about right now? What is running through your mind? Are you saying something to yourself? What are the thoughts going through your mind? (Pause . . .) Now direct your attention to your feelings. Do you feel happy? Sad? Are you feeling anxious? Is it hard to give your feeling a name? Are you feeling several emotions at once? Simply observe, do not judge whether your feelings are right or wrong. (Pause . . .) Take a couple more deep breaths . . . try to move your feet, legs, back, chest, shoulders, arms, hands, neck and head . . . And gently open your eyes and have a look around you . . . Homework

If desired, you can suggest that participants continue to practise this exercise as additional or alternative homework (see Homework section).

Discussion with group

Follow the activity with a guided discussion, including discussion points such as the following: 1. How did that feel? 2. Was it easy to concentrate on the different parts of your body? 3. Which was easiest – paying attention to your body, your thoughts or your feelings?

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Session 2: Self-Monitoring

Part 4 Homework: Self-Monitoring in Everyday Life

1:15’ – 1:30’

Goal: • To help participants to incorporate self-monitoring into their daily routine. Contents

Instructions

Homework Option 1: Keeping a diary

Give each participant a Diary packet to take home, stressing that this method is just one way to self-monitor. (Note that diaries are different for patients and carers.) If participants feel that the diary is not appropriate for their needs, you can encourage them to adapt the diary so that it better suits them, or to use a different method of selfmonitoring (for example, a tape recorder). The homework for the next week is to target one single behaviour or experience. Ask participants to choose a behaviour or experience that is particularly relevant for them. You can give several examples, such as: level of energy level of tiredness amount of exercise ratings of happiness motor symptoms (for people with PD) time spent on none-caring activities (for carers) Ask participants to write the behaviour, experience or feeling they have chosen to monitor on page 3 of the Diary packet, where it says “Experience to be monitored”. Examine the Sample Diary together with the participants, and review the following instructions (the main points are also listed on the Instructions Sheet The diary can be used in various ways throughout the day. For example, you can: • Make an entry whenever a specific experience you are monitoring occurs, noting the time period during which it occurs. • Make a regular entry at specific times of the day. Even if the experience you are monitoring did not occur during the specified time, you make a note of that. • Monitor ongoing feelings or states during specific activities or at regular intervals. In order to keep track of the experience you can: • Use the rating scale by simply ticking a box whenever you make an entry. (Show example.)

Examples

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The left-hand “smiling” face should be used to indicate positive things such as high levels of energy, feeling good, doing something pleasant. The face without a mouth should be used to indicate average or neutral things, such as moderate levels of energy, feeling neither good nor bad, or doing something that is neither pleasant nor unpleasant. The “negative” face on the right hand side should be used to indicate more negative things such as low levels of energy, feeling bad or doing something unpleasant. • In addition (or instead), you can write down information in the column marked “Notes”. Give examples relevant to the experiences chosen by participants, for example, descriptions of what was happening, who was present, or what the person was thinking or feeling. You might suggest that participants develop shorthand codes for behaviours that occur repeatedly, for example, BF ⫽ “ate breakfast”. • (PD specific) You might want to note how your medication is working. A special column has been created in the diary for that purpose.

Exercise: Try out diary

Please try to fill in the diary for at least 2 days, and for the whole week if possible. We often find that you must use a self-monitoring tool for some time before you start to discover patterns in your behaviour or experiences. We will now practise filling in the diary. Please turn to page 3 of the Diary packet. You should have a blank diary sheet in front of you. It is now (say the actual time). Please write this time down under the heading “time” in the first available space. Now use the rating scale, or write something down, or do both, in order to record what is happening to you right now (or during the past hour or so) in relation to the experience/behaviour/feeling you are monitoring. Make sure that participants understand what they are supposed to be doing and provide help as needed.

Homework Option 2: Practise Body Awareness Exercise

If keeping a diary is not possible for a participant or group of participants, an alternate homework exercise is to practise the Body Awareness Exercise. Encourage participants to practise as often as possible, whenever they have a few minutes to spare. The Homework Reminder Sheet contains some hints and tips about how to do this.

Handouts

Diary packets (provide participants with enough empty diary sheets to last until the next session) Homework Reminder Sheet

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Session 2: Self-Monitoring

Part 5 Appetiser: Pleasant Activities Goal: • To help participants become aware of their own experiences with pleasurable activities, objects and events.

Contents

Instructions

Becoming aware of pleasant things in daily life

Please bring one pleasant activity, event, experience, or object from your own life to the next session. Provide a few examples, such as a certain piece of music, a picture, a story about something pleasant.

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Session 2: Self-Monitoring Materials ❏ ❏

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Information Sheet: Self-Monitoring Diary packet (Instructions, Sample Diary, template, Comments Sheet). Note: Make extra copies of the template as needed, e.g., one for each day between sessions for each participant. Diary packets are different for patients and carers. Homework Reminder Sheet

Session 2: Self-Monitoring

Information Sheet: Self-Monitoring What is self-monitoring? • •

Self-monitoring is choosing to pay attention to something about yourself and your situation, and keeping track of it. Writing down experiences will make it easier to keep track of information, and will enable you to see patterns.

What types of experiences might you self-monitor? • • • •

What you are doing How you are feeling What you are thinking What is happening around you

How can self-monitoring be useful? • To understand better what’s happening so you can deal with it better. • To help change what’s happening. How can you learn to self-monitor? 1. Choose a specific experience. You need to choose a specific experience, behaviour or problem you want to monitor, depending on your goal. 2. Be aware. You must first learn to be aware that the experience is occurring. 3. Record your experiences. You need a way to help you keep track of your experiences, such as writing in a notebook, making a checklist, speaking into a tape recorder, or using a computer or typewriter. (Although you can self-monitor without recording your experiences, it is generally helpful to record them.) 4. Practise. The more you practise, the easier and more useful self-monitoring will become.

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Patient Education for People with PD and their Carers

Diary packet for PD DIARY INSTRUCTIONS Time:





For each entry you make, please write down the time to which you are referring (e.g., 9 p.m.–10 p.m.) in the left-hand column. Use a new diary sheet for each day and fill in the date at the top. If you choose to fill in the diary for pre-specified times, you can prepare in advance a diary sheet with those times listed.

Rating Scales:


You can use the rating scales to monitor your behaviour/feelings/experience by putting a tick under the appropriate face.

Example: The experience I have chosen to monitor is my level of energy during the day. At 1 p.m., my levels of energy are way down. I therefore put a tick in the box below the negative face (see also the example on the Sample Diary).

✓


In general, the left-hand “smiling” face should be used to indicate positive things such as high levels of energy, feeling good, doing something pleasant. The face without a mouth should be used to indicate average or neutral things, such as moderate levels of energy, feeling neither good nor bad, or doing something that is neither pleasant nor unpleasant. The “negative” face on the right hand side should be used to indicate more negative things, such as low levels of energy, feeling bad, or doing something unpleasant.

Writing down information:








In addition to or instead of using the rating scales, you can write down information under the heading Notes, describing what you are doing, how you are feeling and the context you are in (e.g., where you are and with whom). If you are writing down information, you might want to use a shorthand code for behaviours you repeat every day, such as taking a shower or having breakfast (see Sample Diary). In addition, you can use the right hand column to keep track of your medication.

For next session’s discussion and review of self-monitoring, please reflect on the experience of keeping a diary. Some questions to think about are listed on the last page of the diary, with space to write your answers.

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Session 2: Self-Monitoring

SAMPLE DIARY Experience to be monitored: Level of energy Date: 12/12/06

Day: Mon/Tues/Wed/Thur/Fri/Sat/Sun

Time

Notes

Night

✓

8.30−9 am 9−10 am

✓ ✓

10−11 am

✓

1 pm

✓

1.35 pm 2−3 pm

Woke up 3 times during the night, felt very tired

Medication stopped working about 4:00 am

BF (= breakfast)

TM (took medication)

Read newspaper and relaxed

Medication started working

Had shower and got dressed. Real struggle and extremely tiring Medication started to wear off TM

✓ ✓

Medication

Slept for an hour, no longer tired afterwards

Medication started to work

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Patient Education for People with PD and their Carers

DIARY Experience to be monitored: Date: Time

(copy as many times as needed) 64

Day: Mon/Tues/Wed/Thur/Fri/Sat/Sun Notes

Medication

Session 2: Self-Monitoring

Diary Comments For next session’s discussion and review of the experience of self-monitoring, please reflect on the experience of keeping a diary by answering some or all of the questions listed below (either in writing, or just by thinking about the question).

•

Do you feel it was a useful exercise? Why/ why not?

•

Has it helped you in any way? How?

•

Do you think you would do it again in the future? If so, what experience would you monitor?

•

How might you modify the diary to suit your needs?

•

Any other reflections or information you think might be useful?

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Patient Education for People with PD and their Carers

Diary packet for carers DIARY INSTRUCTIONS Time:





For each entry you make, please write down the time to which you are referring (e.g., 9 p.m.–10 p.m.) in the left-hand column. Use a new diary sheet for each day and fill in the date at the top. If you choose to fill in the diary for pre-specified times, you can prepare in advance a diary sheet with those times listed.

Rating Scales:


You can use the rating scales to monitor your behaviour/feelings/experience by putting a tick in the box under the appropriate face.

Example: The experience I have chosen to monitor is my level of energy during the day. At 6 a.m. my levels of energy are way down. I therefore put a tick in the box underneath the negative face (see also the example on the Sample Diary).

✓


In general, the left-hand “smiling” face should be used to indicate positive things such as high levels of energy, feeling good, doing something pleasant. The face without a mouth should be used to indicate average or neutral things, such as moderate levels of energy, feeling neither good nor bad, or doing something neither pleasant nor unpleasant. The “negative” face on the right hand side should be used to indicate more negative things such as low levels of energy, feeling bad, or doing something unpleasant.

Writing down information:





In addition to or instead of using the rating scales, you can write down information under the heading notes, describing what you are doing, how you are feeling and the context you are in (e.g., where you are and with whom). If you are writing down information, you might want to use a shorthand code for behaviours you repeat every day, such as taking a shower or having breakfast (see Sample Diary).

For next session’s discussion and review of self-monitoring, please reflect on the experience of keeping a diary. Some questions to think about are listed on the last page of the diary, with space to write your answers.

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Session 2: Self-Monitoring

SAMPLE DIARY Experience to be monitored: Level of energy Date: 12/12/06

Day: Mon/Tues/Wed/Thur/Fri/Sat/Sun

Time

Notes

Night

✓

Woke up 3 times during the night to help husband, felt very tired

6 am

✓

Got out of bed at 6:00 still feeling very tired

7−8 am

✓

BF (= prepared and ate breakfast)

8.15−9.30 am

✓

Had shower and got dressed and helped husband with shower.

10.30 am

✓

Drank a cup of coffee and checked the post

1−2 pm

✓

L (= prepared and ate lunch)

3−5 pm

✓

Painting

5−5.30 pm

✓

Walked in the garden with husband

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Patient Education for People with PD and their Carers

DIARY Experience to be monitored: Date: Time

(copy as many times as needed) 68

Day: Mon/Tues/Wed/Thur/Fri/Sat/Sun Notes

Session 2: Self-Monitoring

Diary Comments For next session’s discussion and review of the experience of self-monitoring, please reflect on the experience of keeping a diary by answering some or all of the questions listed below (either in writing, or just by thinking about the question).

•

Do you feel it was a useful exercise? Why/why not?

•

Has it helped you in any way? How?

•

Do you think you would do it again in the future? If so, what experience would you monitor?

•

How might you modify the diary to suit your needs?

•

Any other reflections or information you think might be useful?

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Patient Education for People with PD and their Carers

Homework Reminder Sheet Self-Monitoring Homework To continue working with self-monitoring, you can do one or both of the following exercises during the time before the next session: 1. Keep track of a chosen behaviour or experience by using the Diary sheets. 2. Practise the Body Awareness exercise. Sit or lie in a comfortable position and ask yourself how specific parts of your body feel, paying particular attention to your breathing. At the end of your practice, notice how you are feeling and what you are thinking. Try to do this exercise whenever you have a little time for yourself, even if it is just for 5 minutes. Appetiser for next session (Pleasant Activities) During the next session we will be talking about Pleasant Activities. We will be discussing how pleasant activities may increase your sense of wellbeing. Please bring one pleasant activity, event, experience or object from your own life to the next session.

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Session 3: Pleasant Activities Michael Macht, Heiner Ellgring, Christian Gerlich and Martina Schradi

Patient Education for People with Parkinson's Disease and their Carers: A Manual. Edited by Marcia Smith Pasqualini and Gwenda Simons. Copyright © 2006 John Wiley & Sons, Ltd.

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Session 3: Pleasant Activities Overview Participants learn about pleasant activities, including the definition, characteristics, benefits and importance of pleasant activities for people with PD and their carers. Guidelines for performing pleasant activities are presented. Pleasant activities are explored and practised (wellbeing exercise). This practice is continued at home.

Materials ❏ ❏

Relevant handouts Flip chart, marker, pleasant objects

Part

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Discuss homework Self-monitoring

Discuss experiences keeping a diary and/or performing the body awareness exercise

Up to 0:30’

Active Information Pleasant activities

Definition: What are pleasant activities? Importance of pleasant activities for people with PD and their carers Guidelines: How can you find and enjoy a pleasant activity?

Up to 1:00’

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Exercise Pleasant activities

Wellbeing exercise: Exploring pleasant objects

Homework

Performing a new pleasant activity every day

4

5

Contents

Appetiser Stress Management

Observing your own behaviour in a stressful situation

Up to 1:20’

Up to 1:30’

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Part 1 Discuss Homework: Self-Monitoring

0:30’

Goal: • To support the application of knowledge and skills from the previous session (SelfMonitoring) in everyday life.

Contents

Instructions

Discuss homework Self-monitoring

Discuss the homework assigned during Session 2 (Self-Monitoring).

Option 1: Keeping a diary

Participants were asked to keep a diary, to reflect on their selfmonitoring experience and if possible to write down comments on the last page of the diary to answer questions such as: Do you feel it is a useful exercise? Has it helped you in any way? Would you do it in the future? How would you modify the diary template to suit your needs? Discuss participants’ experiences of using the diary, using the comments as a starting point. You can suggest ways to handle any problems that occurred.

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Note for group leader

Some participants might ask you to look at their diaries. You should stress that the diaries are for the participants themselves. However, you could give general feedback on the use of the diary and discuss any difficulties with the self-monitoring exercise either within the group context (as above) or in private.

Option 2: Body Awareness exercise

Participants were asked to practise the Body Awareness exercise at home. Ask participants to reflect on the experience and discuss any problems that occurred.

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Session 3: Pleasant Activities

Part 2 Active Information: Pleasant Activities

0:30’ – 1:00’

Goals: • To understand what pleasant activities are, why they are important for subjective wellbeing and health, why they are important for people with PD and what skills or resources are needed to perform them.

Contents

Instructions

Definition: What are pleasant activities?

To put it simply, a pleasant activity is any activity that elicits pleasant sensations and feelings. Pleasant activities are associated with an openness to appreciate and explore the world around you. Ordinary things can become pleasant: a summer breeze, a leaf dancing in the wind, a child playing. Most importantly, pleasant activities are associated with positive emotions, such as contentment and joy. Furthermore, pleasant activities are often performed without specific goals. In other words, people do them just for fun.

Examples from the group

Could you describe for the group some examples of pleasant activities you enjoy? Write examples on the flip chart.

Flip Chart Example: Cooking

Flip Chart

Provide an example, such as the following: John likes to cook. Last week he bought a recipe book and now he is using a recipe from this book to prepare a good meal for his family. He cooks with a passion, enjoying the act of cooking and the many sensory experiences associated with it − for example, the aroma of chopped parsley and garlic and the colours of the various ingredients he uses. Whilst preparing the food he experiences a feeling of joy. Write down the main points of these (or other) examples on the flip chart (e.g. “enjoying aromas and different colours, feeling of joy”).

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Benefits of pleasant activities

Flip Chart

Why are pleasant activities important for our subjective wellbeing? What do you think? Write down the main ideas on the flip chart, and then present the following information: Pleasant activities enrich people’s lives, making them more intense and meaningful. People who are not able to engage in pleasant activities often show symptoms of depression. A decrease in pleasant activities has been shown to contribute to depression. Increasing the number of pleasant activities you engage in may help you keep from feeling depressed.

Examples from the group

Has anybody had this kind of experience − where you didn’t engage in many pleasant activities and felt down or depressed?

Example: Sauna

During a period when Anna was depressed she seemed to have forgotten all the things she used to enjoy. She could not motivate herself to engage in activities that might lead to positive feelings, because every activity seemed too laborious. One Saturday afternoon a friend took her to the sauna. They had a good talk there and somehow she rediscovered a “good feeling within her body”. For the first time in weeks she felt relaxed.

Importance of pleasant activities for people with PD

Why is it important for people with PD to deliberately engage in pleasant activities? Ask participants for their ideas and then suggest the following reasons. Pleasant activities are important for people with PD. You might even say that it is essential for you to deliberately engage in more pleasant activities in order to cope with the illness because: (a) you may no longer be able to engage in your usual favourite activities because of PD symptoms, and must therefore find and practise new pleasant activities. (b) you could experience passivity, loneliness and a loss of control – conditions that can lead to a depressed mood and decreased motivation to perform pleasant activities.

Example: Reading

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During his off-periods, Stephen, a 70-year-old man with PD, was unable to walk. His movements were almost completely blocked and he was not able to go for his usual walk in the nearby wood. However, he found a way to adapt to the situation by searching for pleasant activities that he could do even during his off-periods. He read the newspaper and performed a relaxation exercise.

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Importance of pleasant activities for carers:

Session 3: Pleasant Activities

Why is it important for carers to deliberately engage in pleasant activities? Ask participants for their ideas. Sometimes it is impossible for carers to continue performing their favourite activities. However, it is important for your general wellbeing to engage in such activities and free up some time for yourself. Therefore, you may need to find new pleasant activities to fit your changing situation.

Example: Cinema

Sophie enjoyed seeing films at the cinema with her friends, but since her husband’s PD became worse, she felt she was unable to leave him alone. However, she adapted to this situation by watching DVDs at home, sometimes inviting her friends over to watch with her. She also still managed an occasional trip to the cinema by alternating caring duties with a friend from the support group who was in a similar situation.

Guidelines: How do you find and enjoy a pleasant activity?

Many people find that deliberately performing pleasant activities does not come naturally − they have to learn how to find and enjoy these activities. Here are some hints to help you learn how to do this. Hand out Guidelines for Engaging in Pleasant Activities. Go through handout with group, asking participants if they have any questions. Guidelines for Engaging in Pleasant Activities

Handout

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Patient Education for People with PD and their Carers

Part 3 Exercise: Enhancing Wellbeing/ Exploring Pleasant Objects

1:00’ – 1:20’

Goal: •

To apply information from the previous section by learning about a wide variety of pleasant things/events/activities and the sensory experiences they evoke.

Contents

Instructions

Exercise: Exploring something pleasant

The exercise proceeds in three steps: participants each describe their object; the group explores one of the objects, and participants identify pleasant activities that they can perform in everyday life.

Step 1: Description

In the appetiser presented during the previous session, participants were asked to bring something pleasant (activity, object, event) from their own lives. You now ask them to explain why they experience these “things” as pleasant. If necessary, prompt them to provide more detailed descriptions. Write down key features of pleasant activities on the flip chart (see examples).

Flip Chart

Pleasant Activity

Key Feature

Sitting in the garden on a summer day

Feeling a mild breeze on my skin

Reading a poem

Feeling as if someone really understands me

Eating a piece of chocolate Sweet taste melting on my tongue Step 2: Exploration

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Pick one of the “objects” (for example, an apple, an orange, a piece of wood, a piece of music) brought by one of the participants or yourself to explore with all the senses. Ask participants to freely report perceptions, sensations, associations and fantasies that are elicited by the object. For example, the fragrance of orange peels may be associated with pleasant memories of Christmas time during childhood. A chair may evoke memories from a beautiful voyage to the Far East two years before.

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Step 3: Selection

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Session 3: Pleasant Activities

Identify which pleasant activities participants want to engage in during the period before the next session. Hand out a Pleasant Activity Card and Pleasant Events Schedule to each participant. Ask participants to select three pleasant activities (using the Pleasant Events Schedule for inspiration, if needed), and to write them down on the card. Help participants to see that there are many possible pleasant activities that could be performed each day.

Handouts

Pleasant Activity Card Pleasant Events Schedule

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Patient Education for People with PD and their Carers

Part 4 Homework: Pleasant Activities

1:20’ – 1:30’

Goal: • To increase the frequency of pleasant activities and their impact on everyday life. Goal: Contents

Instructions

Homework: Pleasant activities

Continuing from the exercise (Step 3), in which participants were asked to write down three pleasant activities on the Pleasant Activity Card, participants are encouraged to engage in these activities as homework.

Option 1:

Each participant chooses one pleasant activity to perform daily until the next session.

Option 2:

Each participant chooses three or more pleasant activities and performs at least one of them each day until the next session. Participants are encouraged not only to perform these activities but also to increase their awareness of how pleasant the experience can be. For example, they may monitor the feelings and associations they experience. Use the Guidelines for Engaging in Pleasant Activities to support the homework. Use the Pleasant Events Schedule to show examples of pleasant activities, events and experiences. Use the Pleasant Activity Card to remind participants which pleasant activities they have chosen, and to enable them to write down how often they performed these activities.

Handouts

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Guidelines for Engaging in Pleasant Activities Pleasant Events Schedule Pleasant Activity Card

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Session 3: Pleasant Activities

Part 5 Appetiser: Stress Management • To help participants become aware of their experiences in stressful situations.

Contents Observe your behaviour in a stressful situation

Instructions In the next session, we will talk about everyday stress and stress management. Your appetiser for the next session is to observe in what kind of everyday situations you feel stressed. Please keep one specific situation in mind for the next session, and observe your feelings, thoughts and behaviours in this situation. Refer to the handout entitled Instructions for Appetiser: Session 4, which provides more detailed instructions. Separate handouts are available for people with PD and carers. Instructions for Appetiser: Session 4 (Common Stressors, PD and Carer Versions)

Handouts

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Patient Education for People with PD and their Carers

Session 3: Pleasant Activities Materials ❏ ❏ ❏ ❏

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Guidelines for Engaging in Pleasant Activities Pleasant Activity Card Pleasant Events Schedule Instructions for Appetiser for Session 4 (Stress Management): Common Stressors (PD and Carer versions) Group leader’s “pleasant object“

Session 3: Pleasant Activities

Guidelines for Engaging in Pleasant Activities Feelings of joy, happiness and pleasure do not always happen automatically but are more likely to be experienced if you learn how to identify and focus on pleasurable aspects of everyday objects and activities. Systematic practice can improve your ability to experience pleasure. The following hints may help you practise. 1. Allow yourself to experience pleasure. 2. Learn to know yourself. You are the only one who knows what feels good to you, what types of things you enjoy. 3. Allocate time for pleasant activities. If you are in a hurry, it may be more difficult to feel pleasure. 4. Concentrate and contemplate. Be open to stimuli in the environment. Being sensitive to external stimuli tends to increase the experience of pleasure. 5. Less is more. “Too much” of something does not increase pleasure; it may even have the opposite effect. 6. Practise regularly. It helps to deliberately practise pleasant activities on a regular basis – experiencing pleasure is something you can learn. 7. Search for pleasant experiences in everyday life. You do not need extraordinary conditions to experience pleasure.

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Patient Education for People with PD and their Carers

Pleasant Activity Card – A Pleasant Activity Every Day Use this card to support your engagement in pleasant activities. On the left column of the table are examples of activities that many people experience as pleasurable. In the empty boxes, you can add activities that you find pleasurable. Choose one or more pleasant activities that you would like to perform during the period before the next session, and enter these activities below (in the empty box in the left column). Your homework is to perform at least one of these activities every day. For each activity, mark with a tick (or circle) the day you performed the activity (right column). At the end of the week, you will be able to see how often you actually engaged in your chosen pleasant activities.

Days when activity was performed Pleasant activity Examples MON

TUE

WED

Going for a walk in the park

   MON

TUE

WED

Drinking tea with friends.

MON

TUE

WED

Fifteen minutes of doing nothing. MON



TUE

WED

THU

FRI

SAT

SUN

    

SAT

SUN

FRI

SAT

SUN

THU

FRI

SAT

SUN

THU

FRI

THU

My chosen pleasant activities 1.

MON

TUE

WED

THU

FRI

SAT

SUN

2.

MON

TUE

WED

THU

FRI

SAT

SUN

3.

MON

TUE

WED

THU

FRI

SAT

SUN

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Session 3: Pleasant Activities

Pleasant Events Schedule Read through the list and tick which activities might be pleasant for you. Use the list to inspire you to find your own pleasant activities. 1.

Being in the country

21.

2.

Talking about sports

22. Having a frank and open conversation

3.

Planning trips or vacations

23.

Singing in a group

4.

Buying things for myself

24.

Playing a musical instrument

5.

Being at the beach

25.

Acting

6.

Reading the scriptures or other sacred works

26.

Taking a nap

7.

Going to a sports event or watching it on TV

27.

Being with friends

8.

Reading stories, novels, poems or plays

28.

Taking a bath

29.

Being with my grandchildren Playing chess or checkers

9. Going to lectures or hearing speakers

Being with animals

10.

Driving skilfully

30.

11.

Breathing clean air

31. Gardening, landscaping or doing work around the house

12.

Boating (canoeing, kayaking, sailing, etc.)

32.

Dancing

13. Restoring antiques, refinishing furniture, etc.

33.

Sitting in the sun

14.

Watching TV

34.

Riding a motorcycle

15.

Talking to myself

35.

Just sitting and thinking

16.

Working in politics

36.

Talking about philosophy or religion

17. Working on machines (cars, motorcycles, etc.)

37.

Planning or organising

18.

Playing cards

38.

Listening to the sounds of nature

19.

Taking a shower

39.

Listening to the radio

20.

Woodworking, carpentry

40.

Having friends visit

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Patient Education for People with PD and their Carers

41.

Giving gifts

42. Watching the sky, clouds or a storm

65.

Walking barefoot

66.

Doing housework or laundry; cleaning

43.

Going on outings (to the park, a picnic or a barbecue, etc.)

67.

Listening to music

44.

Taking or looking at a photograph

68.

Hugging or kissing

45.

Giving a speech or lecture

69.

Sleeping late

46.

Being in the mountains

70.

Preparing a new or special food

47.

Eating good meals

71.

Watching people

48.

Being downtown

72.

Building or watching a fire

49.

Playing in a musical group

73.

Repairing things

50.

Hiking

74.

Cycling

51.

Going to a museum or exhibition

75. Writing letters, cards, notes or stories

52. Fishing

76.

Being with my husband or wife

77.

Going on field trips, nature walks, etc.

53.

Having daydreams

54.

Going to the cinema

78.

Taking a walk

55.

Cooking meals

79.

Sewing

56.

Going to a restaurant

80.

Cake decorating

57.

Seeing or smelling a flower or plant

81.

Beachcombing

58.

Getting up early in the morning

82.

Staying up late

59.

Visiting friends

83.

Being with my children

60.

Writing in a diary

84.

Travelling

61. Saying prayers

85. Attending a concert, opera or ballet

62.

Meditating or doing Yoga

86.

Going to a play

63.

Reading the newspaper

87.

Looking at the stars or moon

64.

Swimming

88.

Bingo

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Session 3: Pleasant Activities

Instructions for Appetiser: Session 4 (People with PD) Common Stressors for People with Parkinson’s Disease People with PD often experience stress in everyday situations that were not stressful in the past. Negative thoughts and feelings of discomfort associated with the situations can increase motor symptoms of the illness, such as tremor. Examples of such everyday situations are: -

paying with cash at a supermarket signing documents at a bank being in hectic surroundings or in a crowd being late eating in social situations using public transport needing to use the toilet whilst in public being observed or stared at being spoken to about symptoms of PD

These situations may be more stressful than before because problems associated with PD can affect coping ability. My recent stressful experience In what kinds of situations do you experience stress (discomfort, tension, irritability)? Choose one recent stressful experience and keep it in mind for the next session, which deals with stress and stress management. My stressful situation is: Observe your feelings, thoughts and behaviour in this situation.

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Instructions for Appetiser: Session 4 (Carers) Common Stressors for Carers of People with Parkinson’s Disease Living with and caring for a person with PD can affect your everyday life, resulting in changes that are often experienced as stressful. Examples of such situations are: -

-

waiting for the person with PD slowness of the partner/relative when you are in a hurry situations in which your own interests and the person with PD’s interests conflict (for example, you would like to go somewhere together but your partner wants to stay at home) the person with PD asks you to stay at home when you are about to leave to go somewhere alone needing to continually check that the person with PD takes her/his medicine

My recent stressful experience In what kinds of situations do you experience stress (discomfort, tension, irritability)? Choose one recent stressful experience and bear it in mind for the next session, which deals with stress and stress management. My stressful situation is: Observe your feelings, thoughts and behaviour in this situation. (Please note that for this Appetiser, we are referring to relatively brief stressful experiences. In Session 5 we will talk more generally about carers’ long-term challenges.)

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Session 4: Stress Management for People with PD and for Carers Anu Lankinen, Vappu Viemerö and Anne Lehtonen

Patient Education for People with Parkinson's Disease and their Carers: A Manual. Edited by Marcia Smith Pasqualini and Gwenda Simons. Copyright © 2006 John Wiley & Sons, Ltd.

Session 4: Stress Management

Because the content of this session differs significantly for carers and people with Parkinson’s disease (PD), separate descriptions are provided for each group. In addition, for both groups, each session has two different versions, designated Option 1 and Option 2. Option 1 is a “cognitive” option, which is recommended for most groups. This option focuses on how to use thoughts to reduce stress. Option 2 is a “behavioural” option, which is recommended for groups with participants who do not desire or are not able to work on a cognitive level. If time permits, both options may be followed.

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Patient Education for People with PD and their Carers

Session 4: Stress Management Overview Participants receive information about stress and stress management, and practise a specific method of stress management. This practice is continued at home.

Materials ❏ ❏ ❏ ❏

Relevant handouts Stress circles figure (for slides or handouts) Flip chart, markers, blank cards, pens for participants (Optional: relaxing music)

Part

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Discuss homework Pleasant activities

Discussion of experiences with pleasant activities

Active Information Stress management

Option 1: Stress and stress management – The role of your thoughts

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Contents

Option 2: Stress and stress management – Relaxation as a stress management method Exercise Stress management

Option 1: Learning alternative ways of thinking Option 2: Relaxation training

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Homework Stress management

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Observing changes of mood and causes of worry

Please note: Option 1 is the cognitive option; Option 2 is the behavioural option. 92

Up to 0:50’

Up to 1:15’

Option 1: Trying out alternative ways of thinking Option 2: Daily relaxation training

Appetiser Management of anxiety and depression

Up to 0:30’

Up to 1:30’

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Session 4: Stress Management

Part 1 Discuss Homework: Pleasant Activities

0:30’

Goal: • To support application of knowledge and skills from the previous session (Pleasant Activities) in everyday life.

Contents Discuss homework Pleasant activities

Instructions Ask participants to briefly describe their experiences performing pleasant activities since the last session. Encourage the participants to talk about problems that arose, such as: • External barriers, for example distraction by others or disturbances. • Internal barriers, for example lack of motivation or time. • Inappropriateness of chosen activity, for example the activity was not as pleasant as expected or was too difficult. Briefly discuss these problems with the group and invite other participants to suggest solutions. Some possible solutions that could be suggested include: • External barriers. Establish surroundings that allow you to perform pleasant activities more easily, for example, in your own room. Find a suitable time during the day to perform the pleasant activities without being disturbed. • Internal barriers. Consider the benefits of pleasant activities. Perform pleasant activities together with a partner. • Activity was not appropriate. Find more suitable pleasant activities by referring again to the Pleasant Events Schedule. Encourage participants to continue using this exercise.

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Part 2 Active Information (Option 1): Stress and Stress Management – The Role of Your Thoughts 0:30’ – 0:50’

Goals: • To understand what stress is and what components comprise it. • To understand why stress management is important for the wellbeing of people with PD. • To understand what you can do in order to cope better with everyday situations that are experienced as stressful. Contents Step 1: Appetiser discussion

Instructions Refer to the Instructions for Appetiser: Session 4 handout given out at the end of the previous session, which lists examples of common stressful situations. Ask participants to describe some of their own stressful experiences. Choose one of the participants’ examples, and use it when explaining the rest of the steps in this section. Use the same example for all steps, pointing out that the same principles apply to other examples as well.

Example

If no adequate examples are given by the participants, you can use your own, such as: A person with PD is standing at a checkout at a supermarket with many people in the queue behind her. She has difficulty getting the money out of her purse because her hands are shaking and she feels nervous. When choosing the example, be sure to take into account the characteristics of the specific group (such as stage of PD and age).

Note for group leader

If you are running short on time (for example, if the homework discussion has taken longer than anticipated) you can ask participants to pair up with a partner and tell each other about their stressful situations, instead of having every participant describe their stressful experiences to the whole group.

Step 2: What is stress?

Stress is a state in which we interpret a situation as demanding more of us than we are capable of managing, for instance if we think that we should do something better or more quickly than we are able to.

Example

At the supermarket checkout, you might think that the cashier or the other people in the queue think that you should hurry so that they don’t have to wait so long. You feel it is impossible for you to go that fast.

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Step 3: Stress and Parkinson’s Disease

Most people with PD say that the disease has lowered their stress threshold. You may have noticed that activities you used to be able to perform automatically now demand conscious concentration and effort. It is difficult to concentrate on several things at the same time. In addition, if your muscle movements are slower, you cannot perform as quickly as before, and therefore are likely to feel time pressure more acutely than in the past.

Example

Before the symptoms of PD appeared, you were probably able to do things like shopping quite automatically. For example, at the checkout, you might have chatted with the assistant whilst you put the shopping in your bag. Now that PD has affected your movements you may need to really concentrate on what you do. A minor disruption, such as an extra question from the shop assistant, might disturb your concentration. PD also challenges you with new stressors (mention some of the stressful situations discussed during the appetiser). For example, some people with PD find it disturbing when people notice their symptoms, such as tremor. To make it worse, PD symptoms tend to increase in situations that are experienced as stressful.

Step 4: Components of stress

We can divide a stressful experience into several components. 1. Situation: the circumstances in which you experience stress. 2. Thoughts: your interpretation of the situation and of your ability to cope with it. The thoughts can be seen as self-instructions, in other words, what you “say” to yourself in the situation. 3. Reactions: at three different levels: • emotional reactions (feelings of discomfort, tension, irritability, nervousness) • bodily reactions (muscle tension, worsening of PD symptoms) • behavioural reactions (how you act in the situation). The components of stress are interrelated. A particular situation itself is not inherently “stressful” because what is stressful for one person might not be for another. What is important is how you interpret the situation and what you say to yourself about it. If you think that the situation is too demanding and you can’t cope with it, your thinking influences your reactions at the level of muscle tension, PD symptoms and emotional reactions. These reactions feed back and influence your thoughts. This is called a negative stress circle. On the other hand, if you think that you’ll handle the situation even if it is challenging, your thoughts influence your reactions in a positive way, and the calm reactions of your body and feelings reinforce your thinking. These factors also influence your behaviour in the situation. This is called a positive stress circle.

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Patient Education for People with PD and their Carers

Draw a negative and a positive stress circle on a flip chart or other medium, or show a slide displaying the stress circles. (A model of the stress circles is included in the materials component of this session.) Present the following example, whilst pointing to the picture of the stress circles: Imagine that you are at the supermarket checkout. The cashier has just told you how much your shopping costs and you are about to pay. There are quite a few people behind you in the queue. This is the situation: You think: “Oh no, what a queue! The people behind me look angry and they seem to be in a hurry. I need to hurry up, but I can’t manage it.” This way of thinking leads you to feel nervous (emotional reaction). The tension in your muscles increases and your tremor worsens (bodily reaction). As a consequence, you drop your wallet (behavioural reaction) and the money is scattered on the floor. All of this reinforces your thought that you can’t handle the situation. This is an example of a negative stress circle. The same situation can be used to illustrate the effects of a positive stress circle: The situation is exactly the same: you are about to pay at the supermarket checkout. You could instead think: “Well, there’s quite a queue there but they will be able to wait a moment. I will do better if I take the time I need rather than trying to rush it. Let me first take a deep breath, and then I’ll get my money out. I’ll make it.” This way of thinking helps you feel calm/emotional no matter what the situation. You don’t experience increased muscle tension and your tremor remains at a normal level (bodily reaction). You can take the money out or ask the clerk to help you. Feeling relaxed in your mind and body, your calm thinking is reinforced. Even if someone in the queue is impatient, you don’t let it spoil your day. This is an example of a positive stress circle.

Flip Chart

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After presenting the example, divide the flip chart into three columns: Situation/Thought/Reactions. Further subdivide the “thought” column into two columns, with “old thought” in the first subcolumn and “alternative thought” in the second subcolumn. Similarly subdivide the “reactions” column, with “old reaction” in the first subcolumn and “alternative reaction” in the second subcolumn. Write down notes for the example as follows:

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Situation: at checkout, with a long queue behind Old thought: “I can’t manage this as fast as I should” Old reactions: tremor increases, feel nervous, difficulty getting money out Alternative thought: “I’ll take the time I need, I can manage this” Alternative reactions: tremor doesn’t increase, feel calm, able to finish the shopping

Step 5: Importance of stress management for people with PD

A little stress can have positive effects: many people say they perform at their best when they have a little pressure. Too much stress, however, is harmful for our health, and as already noted, with PD “too much” is reached much more easily. Chronic stress can lead to depression, burnout or physical illnesses. Learning to cope effectively with stress may help prevent these problems and increase our feelings of wellbeing. Some people try to eliminate stress by completely avoiding situations that they experience as stressful. However, avoiding situations often has more negative than positive consequences for your wellbeing. For example, social situations are often experienced as stressful, but at the same time they are often associated with many positive feelings and consequences, such as when you socialise with other people. Avoiding such situations leads to social isolation and increases negative feelings connected to the situation. Instead of avoiding such situations, you can instead learn ways to cope with them. Many situations cannot be avoided anyway, so you have to cope with them in one way or another. The old strategies you may have used in the past to manage stress may not be effective in the new situation, living with PD. Therefore, it is important to learn new strategies to handle the new situations.

Step 6: Alternative ways of thinking as a stress management method

There are many practical ways to prevent stress and cope with it, such as: • • •

planning daily activities in order to prevent overload finding alternative ways to do things including enough pleasant activities, rest and relaxation in your day

In this session, however, we are looking specifically at how you can break the negative stress circle and manage stress by the way you think about the stressful situation and your ability to cope with it. We’ll look at specific situations and talk about how you could change the automatic, stress-increasing thinking or inner speech into stress-reducing thinking.

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During the course of our lives, we all learn patterns of thinking and self-instruction in certain situations, so that our thoughts become almost automatic when we encounter those same situations in the future. To counteract this automatic way of thinking, you need to deliberately learn new thinking patterns. By observing your thoughts in situations in which you experience stress, you can learn to recognise stress-increasing thoughts and replace them with stress-reducing alternative thoughts. In today’s exercise we’ll try this out. Slides

If desired, whilst explaining the contents of “active information”, you can write out the main points on a flip chart, or show the main points on slides or another medium. Hand out Guidelines for Alternative Ways of Thinking in Stressful Situations. It summarises the important information about stress and provides practical instructions for using alternative ways of thinking in stressful situations. Guidelines for Alternative Ways of Thinking in Stressful Situations

Handout

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Part 2 Active Information (Option 2): Stress and Stress Management – Relaxation as a Stress 0:30’ – 0:50’ Management Method Goals: • To understand what relaxation is. • To understand the importance of relaxation as a means to prevent, manage and counteract the effects of stress. • To learn how to relax.

Contents Step 1: Appetiser discussion

Instructions Refer to the Instructions for Appetiser: Session 4 handout given at the end of the previous session, which lists examples of common stressful situations. Ask participants to share their own examples of stressful experiences. All people experience stress every now and then but people with PD often experience stress much more easily than before. Therefore, the total amount of stress often increases considerably. When there’s more stress there’s also more need to counteract its effects. That’s why we are talking today about relaxation.

Step 2: What is relaxation?

Relaxation can counteract the effects of stress. Relaxation affects both the body and mind. Physically, relaxation of muscles suggests feelings of lightness and the absence of tension. Psychologically, relaxation refers to feelings of calmness and the absence of feelings of hurry and anxiety. In everyday language, people can use the word relaxation for many kinds of activities, such as watching TV, walking calmly or engaging in their favourite hobbies. In that sense, relaxation is like a side effect of doing something you like and concentrating on things that are not stressful. Here, however, we are talking about relaxation as a specific skill. It is an active, purposeful method, with which we can concentrate on the feelings in our bodies.

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Step 3: Why is relaxation important for people with PD?

Patient Education for People with PD and their Carers

Most people with PD say that the disease has lowered their stress threshold. You may have noticed that activities you used to be able to perform automatically now demand conscious concentration and effort. It is difficult to concentrate on several things at the same time. In addition, if your muscle movements are slower, you cannot perform as quickly as before, and therefore are likely to feel time pressure more acutely than in the past. PD also challenges you with new stressors (mention some of the stressful situations discussed during the appetiser). For example, some people with PD find it disturbing when people notice their symptoms, such as tremor. To make it worse, PD symptoms tend to increase in situations that are experienced as stressful. Therefore, people with PD tend to experience quite a lot of stress in their day-to-day lives. Relaxation is one good way to reduce the effects of these stressors.

Step 4: How can you learn to relax?

Everybody can learn to relax. Relaxation, like any skill, requires regular practice. The more we practise the easier it is for us to become relaxed with little effort. In the beginning, it is helpful to have a calm setting for relaxation: a quiet place where you will not be disturbed for a while. Later you will be able to relax in noisier places and in shorter amounts of time. It is also helpful to reserve a specific time of the day that is only for you. You don’t necessarily need a lot of time in order to relax; even a few minutes’ relaxation can be helpful. If possible, however, it is even better if you have a bit more time, for example, at least 15 minutes. It is easier to reach a state of relaxation when you are not in a hurry. When you are beginning a relaxation exercise, start by getting into a comfortable position, either lying down or sitting in a comfortable chair. Breathing is a key to relaxation. The simplest way to relax is to concentrate on breathing out calmly, and letting your breath flow in and out at a calm pace. However, there are many different methods that can be used to relax. In the exercise section of today’s session we’ll try out a relaxation method that combines muscle relaxation, breath control and visual imagery. Hand out the Guidelines for Relaxation. This sheet summarises the most important points about relaxation and suggests practical instructions for relaxation training. Discuss the points on the handout and give participants an opportunity to ask questions. Guidelines for Relaxation

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Part 3 Exercise (Option 1): Learning Alternative 0:50’ – 1:15’ Ways of Thinking Goal: • To elaborate and apply the information from the previous section about how new ways of thinking can reduce stress. Contents

Instructions

Step 1: Generating alternative thoughts

From the stressful experiences that participants volunteered at the beginning of the session, choose one experience to use as a basis for the exercise.

Notes for group leader

In order to promote generalisation of the idea of alternative ways of thinking, it is better to use a different example from the one used throughout the Active Information section (e.g., paying at the cashier’s) even if someone has mentioned it. However, if you are running out of time and participants have not been able to come up with experiences you can just remind participants of this example. If you have extra time, you can write all of the participants’ Appetiser examples on the flip chart, dividing each of these examples into situation/thought/reaction.

Flip Chart

As before, after presenting the example, divide the flip chart into three columns: Situation/Thought/Reactions. Further subdivide the “thought” column into two columns, with “old thought” in the first subcolumn and “alternative thought” in the second subcolumn. Similarly subdivide the “reactions” column, with “old reaction” in the first subcolumn and “alternative reaction” in the second subcolumn. Ask participants for suggestions for alternative thoughts that could help to reduce stress in this specific situation. Write the suggestions under the “Alternative Thought” column on the flip chart. You can also give suggestions that are not mentioned by the participants (for example, the right to take your time; telling yourself to breathe deeply and calmly). Aim to generate at least as many alternatives as there are participants. Use the Guidelines for Alternative Ways of Thinking in Stressful Situations to help generate alternatives. 101

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Step 2: Expressing alternative ways of thinking

Patient Education for People with PD and their Carers

This exercise is conducted in “rounds”. Start with the participant whose stressful experience was picked and ask her/him to describe the situation and original stress-increasing thought. The participant sitting next to her/him then reads out one of the alternative thoughts from the flip chart. All participants and the group leader take turns reading an alternative thought, going around the room twice if possible. At the end, the person who experienced the stressful situation is asked to repeat aloud one of the alternative thoughts just expressed. If time allows, the exercise can be repeated with one or more of the other stressful experiences. Participants can remain seated throughout this exercise.

Note for group leader

If participants show resistance towards doing this exercise, or if you notice that the participants do not understand the basic idea of alternative ways of thinking, you can replace the exercise by a discussion of practical behavioural alternatives that could be used to manage the specific situation.

Step 3: Discussion

After the exercise, ask the person whose example has been used: • • • •

What was it like to hear the alternative thoughts said aloud? How did you feel when you said aloud the alternative thought yourself at the end, compared with the original stress-increasing thought? What consequences do you think the alternative thought would have for how you’d feel and behave in the situation? What other kinds of alternative thoughts could you use in the same situation?

Encourage other participants to share their thoughts about the exercise, too. Then suggest ways in which the same principle can be applied in real-life stressful situations, for example: When you recognise that you are having “stress-increasing thoughts”, you can purposely think and “talk” to yourself in a stress-reducing way. This has consequences for how you cope with the situation. Guidelines for Alternative Ways of Thinking in Stressful Situations Handout

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Part 3 Exercise (Option 2): Relaxation Training

0:50’ – 1:15’

Goals: • To elaborate and apply information presented in the previous section about relaxation training as a method of stress management.

Contents Step 1: Preparation

Instructions It is usually more effective for participants to perform the exercise lying down but, if that is not possible, they can perform the exercise sitting in a chair. If desired you can play restful music in the background. This exercise includes components from three different relaxation methods: muscle relaxation, breath control and visual imaging. In order to be able to relax, you must first be aware of the difference between tension and relaxation in your body. (Refer to the Body Awareness exercise in Session 2.) Please get into a comfortable position. Lean against the back of your chair (if sitting)/let your weight rest evenly on the floor (if lying down). Keep your legs a comfortable distance from each other. Let your feet lie on the floor in whatever way feels natural. Let your arms rest in a comfortable position, on the arm rests of the chair or on your thighs (if sitting)/on the floor (if lying down). Close your eyes and take a deep breath. Concentrate only on yourself. Tune everything else out. This room is starting to disappear, bit by bit, from your awareness. (Pause . . .) The voices around you are fading to the background. (Pause . . .) If distracting thoughts come to your mind, let them come and go away from your consciousness. Concentrate only on yourself, on your body, your breath. Let your breath flow in and out at its own pace. Notice that each time you exhale, you become more and more relaxed. Your body is feeling heavier, pressing against the chair/floor.

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Step 2: Muscle relaxation

We will relax our bodies by first tightening and then relaxing groups of muscles. We will go through each group of muscles twice: first tightening the group of muscles, then letting them relax. When tightening the muscles, try to use only those muscles that I ask you to tighten. Let the rest of your body remain relaxed.

Note for group leader

Talk faster when you instruct participants to tighten muscles and more slowly when you ask them to relax muscles. Have them tighten muscles for about 5 seconds each time. 1. Let’s start by concentrating on your right leg. Tighten the muscles in the leg by straightening the leg and bending the ankle. Feel the tension in the foot and the leg. Now let the muscles relax. Feel the difference between the tension in the muscles before, and the relaxation now. Tighten the muscles in the leg and foot one more time: straighten the leg and bend the ankle, hold . . . And relax again. Let the muscles in the leg and foot relax more and more. 2.

Concentrate now on your left leg. Tighten the muscles in your left leg by straightening the leg and bending the ankle. Hold that tightness and feel the tension in the foot and the leg. Now let the muscles relax. Observe the sensation of relaxation in the muscles. (Repeat tightening and relaxing.)

3. Now, concentrate on your bottom. Tighten those muscles, keep tightening them. Now, let those muscles relax. (Repeat tightening and relaxing.) 4.

Concentrate now on the muscles in your back. Straighten your back by pulling your shoulders back toward the backbone. Feel the tension in your back muscles. Now let your back muscles relax again. Stay relaxed and let the sensation of relaxation spread through your whole back. (Repeat tightening and relaxing.)

5. Direct your attention now to your abdominal muscles. Push the lower part of your back tightly (against the back of the chair/ against the floor) by tightening up your abdominal muscles. Hold the muscles tightly and feel the tension in your abdomen. Now let the abdominal muscles relax again. Observe the warm sensation of relaxation in your abdomen. (Repeat tightening and relaxing.)

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6.

Next, concentrate on your arms and hands. Tighten the arm muscles by straightening both arms and making fists with your hands. Hold the muscles tightly, and feel the tension in the arms and hands. Let your arms and hands relax again. Let your arms rest comfortably and feel the warmth of relaxation. Let the sensation of relaxation get deeper and deeper. (Repeat tightening and relaxing.)

7.

We will now move to the neck muscles. Tighten your neck by pushing the back of your head against the back of the chair/ against the floor and your chin towards your chest. Keep the neck muscles tightened. Now let them relax again. Feel the relaxation spread to your neck and your shoulders. (Repeat tightening and relaxing.)

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Direct your attention now to your face and forehead. Wrinkle up your forehead and face, keep the muscles tightened. Now let your forehead become smooth and relaxed again. As your forehead muscles relax, let your mind relax as well. (Repeat tightening and relaxing.) Now that we have gone through all of the major muscles in your body, you can concentrate on the sensation of relaxation in your body as a whole. Let yourself relax more and more deeply. (Longer pause.)

Step 3: Breath control

Now I’d like you to concentrate on your breathing. Direct your attention to how the air flows in and out, in and out. Breathe deeply a few times. Let the air flow into the lowest parts of your lungs. Let your breathing flow at its own pace again. Concentrate on your exhalation. Notice that each time you exhale, your body relaxes more and more. Feel the sensation of calmness spreading through your mind when you exhale. Just let the breath flow . . . (Pause.)

Step 4: Visual imagery

Let’s deepen the state of relaxation with the help of a mental picture. Imagine that you are in a place where you feel good. You could be at the seaside, in a forest, in a meadow in the sunshine, or in some other place which is especially important and safe for you, and in which you feel good. In your imagination, go to that place and imagine that you are lying or sitting in that place right now.

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Let this place become as vivid to you as possible. Is it warm or cold around you? What do you see? Do you see sky, trees, plants, animals, people? What do you hear? Do you hear voices from nature, animals, people or music? What sensations do you feel in your body? How do your hands feel? How about your skin, your face? What smells are in the air? What do you feel? Keep a clear image of this place in your mind. Observe your state of relaxation. Associate this place with the sensation of relaxation. During the next few minutes I will be quiet so that you can concentrate on relaxation (pause of about 2 minutes). This place will become a place you can always come back to when you want to relax. Step 5: Coming back

Now I would like for you to begin to prepare, little by little, to come back from this relaxing place of yours to the room we are in. Let the normal muscle tone flow back into your body. You can start by moving your hands a little. Stretch and shake other parts of your body too. Observe how each inhalation gives you renewed energy. Breathe in deeply a few times and open your eyes.

Step 6: Discussion

Ask the participants what their experiences were like. • How did you feel during this exercise? • Was it easy to concentrate? • Which of the three ways of relaxing (muscle relaxation, breath control or visual imagery) did you find the most effective?

This relaxation exercise is adapted from Psychologische Interventionen bei der ParkinsonErkrankung: Ein Behandlungsmanual by Michael Macht and Heiner Ellgring. Reproduced by permission of W. Kohlhammer GMBH.

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Part 4 Homework (Option 1): Trying Out Alternative Ways of Thinking

1:15’ – 1:30’

Goal: •

To learn to apply stress-reducing methods to daily life.

Contents

Instructions

Step 1: Choosing a stress-reducing thought

Ask each participant to choose one alternative, stress-reducing thought that fits either the example of a stressful situation that they brought to the session (Appetiser) or one of their other frequently experienced stressful situations. Although alternatives generated by the group in the previous exercise or examples from the Guidelines for Alternative Ways of Thinking in Stressful Situations can be used, emphasise that the most effective alternatives are often formulated by the person her/ himself. For this homework, one alternative thought is sufficient.

Step 2: Making a reminder card

Have each participant choose one blank (coloured) card, and write her/his chosen stress-reducing thought on the card. (You can write the thought for participants who have difficulty writing.)

Example

For example, if a participant finds it stressful to be at the supermarket checkout, she/he could write on the reminder card: “I have the right to take the time I need.” Encourage participants to share what they have written on their card with other participants (if time allows).

Step 3: Using the reminder card

Instruct participants to keep the reminder card with them (for example in their pocket, wallet or handbag), and ask them to try to identify situations that are stressful as they approach or occur. At those times, they should take out the reminder card and read what they have written for this situation. If it is not possible to take out the card in the situation, they can instead just think about the card and about the alternative thought they wrote down. Suggest that if participants do not spontaneously find themselves in the stressful situation for which they have written the card, they could deliberately expose themselves to that situation (for example, going to a supermarket, even if they normally do not do this often) during the period before the next session.

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Hand out Instructions for the Homework: Session 4 – Trying Out Alternative Ways of Thinking.

Handouts

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Instructions for the Homework: Session 4 – Trying Out Alternative Ways of Thinking Guidelines for Alternative Ways of Thinking in Stressful Situations

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Part 4 Homework (Option 2): Daily Relaxation Training

1:15’ – 1:30’

Goal: • To learn to apply relaxation training to daily life.

Contents

Instructions

Instructions for daily relaxation training

Ask participants to practise relaxing using the relaxation exercise every day.

Homework at basic level

Performing the relaxation exercise at the “basic” level requires 1−5 minutes per day.

Homework at advanced level

Performing the relaxation exercise at the “advanced” level requires 15 minutes per day. Hand out Instructions for the Homework: Session 4 – Daily Relaxation Training. Ask participants to think about which level of exercise they will be able to do and when and where they will best be able to complete the exercise. Have them write down the time of day on the homework sheet. Ask if anyone has any questions. Instructions for the Homework: Session 4 – Daily Relaxation Training

Handout

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Part 5 Appetiser: Management of Anxiety and Depression Goal: • To help participants become aware of changes in their mood.

Contents Observe your mood

Instructions During the coming days, try to observe changes in your mood. In addition, think about what kinds of things worry you. Hand out Instructions for the Appetiser: Session 5 Instructions for the Appetiser: Session 5

Handout

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Session 4: Stress Management Materials For both options: ❏

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Negative and positive stress circles (to be shown on OHP, printed as handout, or made into slides). Instructions for the Appetiser: Session 5

For Option 1 only: ❏ ❏ ❏

Guidelines for Alternative Ways of Thinking in Stressful Situations Examples of Stress-Increasing and Stress-Reducing Thoughts Instructions for Homework: Session 4 – Trying Out Stress-Reducing Thinking

For Option 2 only: ❏ ❏

Guidelines for Relaxation Instructions for Homework: Session 4 – Daily Relaxation Training

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Stress Circles

Negative stress circle THINKING: Stress-increasing thoughts

FEELINGS: Tension Irritability Anxiety

PARKINSON SYMPTOMS: Worsening of Parkinson symptoms

BODILY SENSATIONS: Bodily tension

Positive stress circle THINKING: Stress-reducing thoughts

PARKINSON SYMPTOMS: Improvement in Parkinson symptoms

FEELINGS: Calmness Confidence

BODILY SENSATIONS: Bodily relaxation

The stress circles are adapted from Psychologische Interventionen bei der Parkinson-Erkrankung: Ein Behandlungsmanual by Michael Macht and Heiner Ellgring. Reproduced by permission of W. Kohlhammer GMBH.

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Guidelines for Alternative Ways of Thinking in Stressful Situations When you feel stressed it is essential to make a distinction between: 1.

The situation in which you experience stress (for example, paying at the supermarket). 2. Your thoughts, self-instructions − in other words, what you silently say to yourself about the situation and your ability to cope with it (for example, “oh no, now I really have to hurry! I’ll never make it”). 3. Your reactions, such as bodily tension, worsening of PD symptoms, feelings of nervousness, avoidance behaviour. When you feel stressed, it is not a result of the situation itself but of your thoughts. In order to diminish feelings of stress, you must therefore change your way of thinking. In order to change your way of thinking, you must first become aware of it. By observing the way you “talk” to yourself in stressful situations you can become aware of your thoughts. The next step is to start changing your thoughts. When you catch yourself thinking in a stress-increasing way you can start to intentionally replace your stress-increasing thought with a stress-reducing thought. The table on the second page of this handout shows some examples of stress-increasing thoughts (left column) and stress-reducing alternatives (right column). You can use them as a model when formulating your own stress-reducing thoughts. Your way of thinking may seem almost automatic because you have probably thought that way for a long time. With systematic practice, however, you will find that it is possible to change your thoughts and reduce stress.

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Examples of Stress-Increasing and Stress-Reducing Thoughts

Stress-increasing thought:

Alternative, stress-reducing thought:

Oh no, my hands are shaking.

• Let them (my hands) shake. • It is OK to feel nervous. • I am breathing deeply and calmly.

I can’t do this.

• I can manage this. • I’ll do this as well as I can − that is good enough.

I can’t do this in time.

• I can take the time that I need. • There is time. • Even if I am late, it’s not the end of the world.

This is only getting worse.

•

I am doing fine.

People are staring at me.

• •

I don’t care about other people. I am concentrating on what I’m doing. Let them stare!

They must think I have a hangover.

• •

Let them think what they think! I know better. This is none of their business!

I must succeed.

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I must be fast so that I’m not in the way of those busy people.

•

It’s not so important, even if this doesn’t work perfectly. • Why must I? Does it really matter?

• There’s nothing I can do about it.

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They’ll have to wait. I have a right to take the time I need. Let them wait! Let me think about what I could do before jumping to conclusions.

Session 4: Stress Management

Guidelines for Relaxation Being able to relax is an important way to counteract the effects of stress. Relaxation is a skill that can be learned. Systematic practice can improve the ability to relax, even in difficult situations. The following hints may be helpful for such practice: 1 2 3 4 5 6 7 8

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Allow yourself to relax. Allocate time for relaxation. Reserve a specific time for relaxation, for example, 15 minutes every evening. Select a quiet place where you will not be disturbed. Close the door, switch off telephones and ask your family members not to disturb you. Get in a comfortable position. You can lie down or sit in a comfortable chair. Concentrate. Switch off your thoughts about the world around you, and direct your thoughts inwards. Breathe out calmly. If you have difficulty concentrating, direct your attention to your breathing. Practise regularly. The more you practise, the easier it will be to reach a state of relaxation. Find your own way of relaxing. Try out different relaxation methods: tightening and relaxing groups of muscles, listening to your breathing, imagining a peaceful scene. Try out different relaxation aids. If you like, you can put on relaxing music when doing relaxation exercises. You can also try out audiotapes/CDs designed to teach relaxation. Enjoy yourself!

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Instructions for Homework: Session 4 Trying out stress-reducing thinking (Option 1) Put the reminder card you made in this session in your pocket, wallet or handbag and keep it with you. When you are approaching a stressful situation, or when you are already in the situation, you can take out the card and read what you’ve written on it. If it is not possible to read the card in the situation, you can still think about what you wrote on it. If you do not find yourself in the stressful situation for which you planned the card (for instance, because you are in the habit of avoiding it), you could deliberately expose yourself to that situation in order to try out alternative thinking before the next session. Example: You wrote a stress-reducing thought for the situation in which you must pay at a supermarket cashier with a long queue behind you. Go to the supermarket. Before you go to the cashier, read the alternative thought on your card.

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Instructions for Homework: Session 4 Daily relaxation training (Option 2) Try to practise relaxation training every day until the next session. Decide first what time of the day you will do your daily relaxation exercise: Each day, I will relax at o’clock. Before doing the homework for the first time, reread the instructions on the handout Guidelines for Relaxation that you were given in the session. You may also want to have this homework sheet with you so that you can check what to do. You can choose between two homework levels. The basic level requires a minimum of one minute daily. The advanced level takes about 15 minutes daily and aims at a deeper state of relaxation. Homework at basic level: Take a 1−5 minute break from your obligations. (You don’t have to use a clock to keep track of the time.) Get in a comfortable position and switch off your everyday thoughts. Concentrate on listening to your breathing, focus on your exhalations. Let your breath flow at its own pace, and let yourself relax every time you exhale. Homework at advanced level: To do this homework you need about 15 minutes for yourself. 1.

Start by concentrating on your breathing. Notice that every time you exhale, you feel more and more relaxed. 2. Tighten and relax groups of muscles in the same way as we did in the session. Tighten the muscles first for about 5 seconds and then relax. Go through the following groups of muscles: – right leg – left leg – bottom – back – abdomen – arms and hands – neck – face and forehead 3. Repeat tightening and relaxing one more time. 4. Let yourself rest for a while. Concentrate on breathing out calmly again. If you like, you can think of your relaxing place: imagine that you are in your favourite place and that you feel relaxed. 5. To come back from the state of relaxation, start by inhaling deeply a few times. Become aware of the noises around you, move your legs and arms a bit. Concentrate on how it feels to breathe in deeply. Notice the renewed energy it brings you. Slowly open your eyes.

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Instructions for the Appetiser: Session 5 The topic of the next session is management of depression and anxiety. In preparation for this session, try to observe changes in your mood during the next few days. In addition, think about what kinds of things worry you.

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Session 4: Stress Management Overview Participants receive information about stress and stress management and practise a specific method of stress management. This practice is continued at home.

Materials ❏ ❏ ❏ ❏

Relevant handouts Stress circles figure (for slides or handouts) Flip chart, markers, blank cards, pens for participants (Optional: relaxing music)

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Discuss homework Pleasant activities

Discussion of experiences with pleasant activities

Active Information Stress management

Option 1: Stress and stress management – The role of your thoughts

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Contents

Option 2: Stress and stress management – Relaxation as a stress management method Exercise Stress management

Option 1: Learning alternative ways of thinking Option 2: Relaxation training

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Appetiser Carer’s Challenge

Up to 0:50’

Up to 1:15’

Option 1: Trying out alternative ways of thinking Option 2: Daily relaxation training

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Up to 0:30’

Observing feelings of anguish, sadness and nervousness.

Up to 1:30’

Please note: Option 1 is the cognitive option; Option 2 is the behavioural option. 119

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Part 1 Discuss Homework: Pleasant Activities

0:30’

Goal: • To support the application of knowledge and skills from the previous session (Pleasant Activities) in daily life.

Contents Discuss homework Pleasant activities

Instructions Ask participants to describe briefly their experiences performing pleasant activities since the last session. Encourage the participants to talk about problems that arose, such as: • External barriers, for example, distraction by others or disturbances • Internal barriers, for example, lack of motivation or time • Inappropriateness of chosen activity, for example, the activity was not as pleasant as expected or was too difficult Briefly discuss these problems with the group and invite other participants to suggest solutions. Some possible solutions that could be suggested include: • External barriers: Establish surroundings that allow you to perform pleasant activities more easily, for example, in your own room. Find a suitable time during the day to perform the pleasant activities without being disturbed. • Internal barriers: Consider the benefits of pleasant activities. Perform pleasant activities together with a partner. • Activity was not appropriate: Find more suitable pleasant activities by referring again to the Pleasant Events Schedule. Encourage participants to continue using this exercise.

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Part 2 Active Information (Option 1): Stress Management – The Role of Your Thoughts 0:30’ – 0:50’

Goals: • To understand what stress is and what components comprise it. • To understand why stress management is important for the wellbeing of carers of people with PD. • To understand what you can do in order to cope better with everyday situations that are experienced as stressful.

Contents Step 1: Appetiser discussion

Instructions Refer to the Instructions for Appetiser: Session 4 handout given at the end of the previous session, which lists examples of common stressful situations. Ask participants to describe some of their own stressful experiences. Choose one of the participants’ examples and use it when explaining the rest of the steps in this section. Use the same example for all steps, pointing out that the same principles apply to other examples as well.

Example

If no adequate examples are given by the participants you can use your own, such as: The carer is about to go to the neurologist with a person who has PD. They are running late and the person with PD is still slowly putting on clothes. When choosing the example, be sure to take into account the characteristics of the specific group (such as stage of PD and age of the person they care for).

Note for group leader

If you are running short on time (for example, if the homework discussion has taken longer than anticipated) you can ask participants to pair up with a partner and tell each other about their stressful situations, instead of having every participant describe their stressful experiences to the whole group.

Step 2: What is stress?

Stress is a state in which we interpret a situation as demanding more of us than we are capable of managing, for instance, if we think that we should do something better or more quickly than we are able to.

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Example

When going to the doctor with your partner/relative with PD you feel that you must arrive on time, but because of the slowness of the person with PD you see that it is impossible.

Step 3: Stress and caring for someone with PD

Caring for someone with PD requires you to confront new situations, such as those we discussed during the appetiser. Changes in the person with PD, such as slowness of movements and increasing dependence, can result in changes in your relationship and in your interaction with that person. You may often take over tasks and roles that used to be the responsibility of the person with PD.

Example

Before your partner/relative developed symptoms of PD, he or she was probably fairly independent, and able to do things such as taking care of doctor’s visits. Now you may be the one who has to keep a record of doctors’ visits and other schedules. This imposes an extra burden on you, in addition to other tasks that have become your responsibility. It may be a new thing for you to have to remind your partner/relative of when you need to leave. You may be the one who has to make sure that he or she starts to prepare early enough to make it on time. Even if your partner/relative is still independent and does not need your help, you might still have noticed that things take more time, which may lead you to feel stressed when you do things together.

Step 4: Components of stress

We can divide a stressful experience into several components. 1. Situation: the circumstances in which you experience stress. 2. Thoughts: your interpretation of the situation and of your ability to cope with it. The thoughts can be seen as self-instructions, in other words, what you “say” to yourself in the situation. 3. Reactions: at three different levels: • • •

emotional reactions (feelings of discomfort, tension, irritability, nervousness) bodily reactions (muscle tension, sweating) behavioural reactions (how you act in the situation).

The components of stress are interrelated. A particular situation itself is not inherently “stressful” because what is stressful for one person might not be for another. What is important is how you interpret the situation, and what you say to yourself about it. If you think that the situation is too demanding and you can’t cope with it, your thinking influences your reactions at the level of muscle tension, symptoms of anxiety and emotional reactions. These reactions feed back and influence your thoughts. This is called a negative stress circle.

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On the other hand, if you think that you’ll handle the situation even if it is challenging, your thoughts influence your reactions in a positive way, and the calm reactions of your body and feelings reinforce your thinking. These factors also influence your behaviour in the situation. This is called a positive stress circle.

Flip Chart Example

Draw a negative and a positive stress circle on a flip chart or other medium, or show a PowerPoint slide/OHP displaying the stress circles. (A model of the stress circles is included in the Materials section of this session.) Present the following example, whilst pointing to the picture of the stress circles: Imagine that your partner/relative has an appointment at the neurologist’s office in half an hour. You are still at home, and your partner/relative has not put on her/his coat yet. This is the situation. You think: “Oh no, we’re going to be late again. We’ve got to get there on time. We’re going to have to really hurry now.” This way of thinking leads to feelings of nervousness and pressure (emotional reaction). You hurry your partner/relative (behavioural reaction), who gets nervous, too. They start to tremble even more than usual, and take even more time than normal to put on their clothes. You accuse them of being too slow and they get upset because you don’t seem to understand their condition. As a result, you both feel bad and you do not speak to each other during the car ride to the neurologist’s office. This is an example of a negative stress circle. Exactly the same situation can also be used to illustrate the effects of a positive stress circle: The situation is exactly the same: your partner/relative has an appointment at the neurologist’s office in half an hour. You could think instead: “Oh, is it that late already? I hope we’ll get there on time, but if we don’t, it’s not the end of the world. That has happened before. I’ll take a deep breath first and we’ll just do the best we can.” This way of thinking helps you feel calm (emotional reactions) no matter what the situation. You leave your partner/relative to get dressed and help them when needed (behavioural reaction). You say something encouraging, and they dress without additional problems. On the car ride to the appointment, you have a conversation about the questions you would like to ask the neurologist. This is an example of a positive stress circle.

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Flip Chart

After presenting the example, divide the flip chart into three columns: Situation/Thought/Reactions. Further subdivide the “thought” column into two columns, with “old thought” in the first subcolumn and “alternative thought” in the second sub-column. Similarly sub-divide the “reactions” column, with “old reaction” in the first sub-column and “alternative reaction” in the second subcolumn. Write down notes from the example as follows:

Example

Situation: Doctor’s visit in 30 minutes, still at home. Old thought: “Oh no, we’ll be late again.” Old reactions: Angry at spouse, who starts to tremble even more. Alternative thought: “If we arrive late, it’s not the end of the world. We’ll just do the best we can.” Alternative reactions: Co-operation with spouse when putting on clothes, leaving for the doctor’s office in peace.

Step 5: Importance of stress management for carers of people with PD

A little stress can have positive effects: many people say they perform at their best when they have a little pressure. Too much stress, however, is harmful to your health. Chronic stress can lead to depression, burnout or physical illnesses. Learning to cope effectively with stress may help prevent these problems and increase your feelings of wellbeing.

Note for group leader

Tell the participants that these topics will be dealt with again in the following session (Carer’s Challenge). Mention that the emphasis in Session 5 will be the total burden of care, whereas today you will be dealing with specific situations that are part of that burden. Then continue. Some people try to eliminate stress by completely avoiding situations that they experience as stressful. However, avoiding situations often has more negative than positive consequences for your wellbeing. For example, social situations are often experienced as stressful, but at the same time they are often associated with many positive feelings and consequences, such as when you socialise with other people. Avoiding such situations leads to social isolation and increases negative feelings connected to the situation. Instead of avoiding such situations, you can instead learn ways to cope with them. Many situations cannot be avoided anyway, so you have to cope with them in one way or another. The old strategies you may have used in the past to manage stress may not be effective in the new situation, living with/helping a person who has PD. Therefore, it is important to learn new strategies to handle the new situations.

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Step 6: Alternative ways of thinking as a stress management method

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There are many practical ways to prevent stress and cope with it, such as: • • •

planning daily activities in order to prevent overload finding alternative ways to do things including enough pleasant activities, rest and relaxation in your day

In this session, however, we are looking specifically at how you can break the negative stress circle and manage stress by the way you think about the stressful situation and your ability to cope with it. We’ll look at specific situations and talk about how we could change the automatic, stress-increasing thinking or inner speech into stress-reducing thinking. During the course of our lives, we all learn patterns of thinking and self-instruction in certain situations, so that our thoughts become almost automatic when we encounter those same situations in the future. To counteract this automatic way of thinking, you need to deliberately learn new thinking patterns. By observing your thoughts in situations in which you experience stress, you can learn to recognise stress-increasing thoughts and replace them with stress-reducing alternative thoughts. In today’s exercise, we’ll try this out. Slides

If desired, whilst explaining the contents of Active Information, you can write out the main points on a flip chart, or show the main points on slides or another medium. Hand out Guidelines for Alternative Ways of Thinking in Stressful Situations. It summarises the important information about stress and provides practical instructions for using alternative ways of thinking in stressful situations. Guidelines for Alternative Ways of Thinking in Stressful Situations

Handout

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Part 2 Active Information (Option 2): Stress Management – Relaxation as a Stress Management Method 0:30’ – 0:50’

Goals: • To understand what relaxation is. • To understand the importance of relaxation as a means to prevent, manage and counteract the effects of stress. • To learn how to relax.

Contents Step 1: Appetiser discussion

Instructions Refer to the Instructions for Appetiser: Session 4 handout given at the end of the previous session, which lists examples of common stressful situations. Ask participants to share their own examples of stressful experiences. All people experience stress every now and then but caring for a person with PD often increases stressful experiences in daily life. Therefore, the total amount of stress often increases considerably. When there’s more stress, there’s also more need to counteract its effects. That’s why we are talking today about relaxation.

Step 2: What is relaxation?

Relaxation can counteract the effects of stress. Relaxation affects both the body and mind. Physically, relaxation of muscles suggests feelings of lightness and the absence of tension. Psychologically, relaxation refers to feelings of calmness and the absence of feelings of hurry and anxiety. In everyday language, people can use the word “relaxation” for many kinds of activities, such as watching TV, walking calmly or engaging in their favourite hobbies. In that sense, relaxation is like a side effect of doing something you like and concentrating on things that are not stressful. Here, however, we are talking about relaxation as a specific skill. It is an active, purposeful method, which we can concentrate on the feelings in our bodies.

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Step 3: Why is relaxation important for carers of people with PD?

Session 4: Stress Management

Caring for someone with PD means that you are confronted with new situations in daily life (mention some of those discussed in the appetiser). Changes in the person with PD, slowness of movement and increasing dependence, might result in changes in your relationship and in your interaction with your partner. You may need to take over tasks and roles that previously were the responsibility of the other person. When the disease progresses, you may need to aid the person with PD in many everyday activities, resulting in both physical and psychological burden. Even if your partner/relative is still independent and doesn’t need your help, you might have noticed that things take more time and you might feel stressed when you do things together. Too much stress is harmful to our health. Chronic stress can lead to depression, burnout or physical illnesses. In the next session, Carer’s Challenge, we’ll talk more about ways to deal with longer term burden, whereas today we’re talking about dealing with daily stressors. Relaxation is one good method for managing and counteracting the effects of daily stress.

Step 4: How can you learn to relax?

Everybody can learn to relax. Relaxation, like any skill, requires regular practice. The more we practise the easier it is for us to become relaxed with little effort. In the beginning, it is helpful to have a calm setting for relaxation: a quiet place where you will not be disturbed for a while. Later you will be able to relax in noisier places and in shorter amounts of time. It is also helpful to reserve a specific time of the day that is only for you. You don’t necessarily need a lot of time in order to relax; even a few minutes’ relaxation can be helpful. If possible, however, it is even better if you have a bit more time, for example, at least 15 minutes. It is easier to reach a state of relaxation when you are not in a hurry. When you are beginning a relaxation exercise, start by getting into a comfortable position, either lying down or sitting in a comfortable chair. Breathing is a key to relaxation. The simplest way to relax is to concentrate on breathing out calmly, and letting your breath flow in and out at a calm pace.

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However, there are many different methods that can be used to relax. In the exercise section of today’s session, we’ll try out a relaxation method that combines muscle relaxation, breath control, and visual imagery. Hand out the Guidelines for Relaxation. This sheet summarises the most important points about relaxation and suggests practical instructions for relaxation training. Discuss the points on the handout and give participants an opportunity to ask questions. Guidelines for Relaxation Handout

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Part 3 Exercise (Option 1): Learning Alternative 0:50’ – 1:15’ Ways of Thinking Goal: • To elaborate and apply the information from the previous section about how new ways of thinking can reduce stress.

Contents

Instructions

Step 1: Generating alternative thoughts

From the stressful experiences participants volunteered at the beginning of the session, choose one experience to use as a basis for the exercise.

Notes for group leader

In order to promote generalisation of the idea of alternative ways of thinking, it is better to use a different example than the one used throughout the Active Information section (e.g., going to the neurologist’s) even if someone has mentioned it. However, if you are running out of time and participants have not been able to come up with experiences you can just remind participants of this example. If you have extra time you can write all of the participants’ Appetiser examples on the flip chart, dividing each of these examples into situation/thought/reaction.

Flip Chart

As before, after presenting the following example, divide the flip chart into three columns: Situation/Thought/Reactions. Further subdivide the “thought” column into two columns, with “old thought” in the first subcolumn and “alternative thought” in the second subcolumn. Similarly subdivide the “reactions” column, with “old reaction” in the first sub-column and “alternative reaction” in the second subcolumn. Ask participants for suggestions for alternative thoughts that could help to reduce stress in this specific situation. Write the suggestions under the “Alternative Thought” column on the flip chart. You can also give suggestions that are not mentioned by the participants (for example, the right to take your time; telling yourself to breathe deeply and calmly). Aim to generate at least as many alternatives as there are participants. Use the Guidelines for Alternative Ways of Thinking in Stressful Situations to help generate alternatives.

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Step 2: Expressing alternative ways of thinking

Patient Education for People with PD and their Carers

This exercise is conducted in “rounds”. Start with the participant whose stressful experience was picked and ask her/him to describe the situation and original stress-increasing thought. The participant sitting next to her/him then reads out one of the alternative thoughts from the flip chart. All participants and the group leader take turns reading an alternative thought, going around the room twice if possible. At the end, the person who experienced the stressful situation is asked to repeat aloud one of the alternative thoughts just expressed. If time allows the exercise can be repeated with one of the other stressful experiences. Participants can remain seated throughout this exercise.

Note for group leader

If participants show resistance towards doing this exercise, or if you notice that the participants do not understand the basic idea of alternative ways of thinking, you can replace the exercise by a discussion of practical behavioural alternatives that could be used to manage the specific situation.

Step 3: Discussion

After the exercise, ask the person whose example has been used: • • • •

What was it like to hear the alternative thoughts said aloud? How did you feel when you said aloud the alternative thought yourself at the end, compared with the original stress-increasing thought? What consequences do you think the alternative thought would have for how you’d feel and behave in the situation? What other kinds of alternative thoughts could you use in the same situation?

Encourage other participants to share their thoughts about the exercise, too. Then suggest ways in which the same principle can be applied in real-life stressful situations, for example: When you recognise that you are having “stress-increasing thoughts”, you can purposely think and “talk” to yourself in a stress-reducing way. This has consequences for how you cope with the situation. Guidelines for Alternative Ways of Thinking in Stressful Situations Handout

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Part 3 Exercise (Option 2): Relaxation Training

0:50’ – 1:15’

Goals: • To elaborate and apply information presented in the previous section about relaxation training as a method of stress management.

Contents Step 1: Preparation

Instructions It is usually more effective for participants to perform the exercise lying down, but if that is not possible they can perform it sitting in a chair. If desired, you can play restful music in the background. This exercise includes components from three different relaxation methods: muscle relaxation, breath control and visual imaging. In order to be able to relax you must first be aware of the difference between tension and relaxation in your body. (Refer to the Body Awareness exercise in Session 2.) Please get into a comfortable position. Lean against the back of your chair (if sitting)/let your weight rest evenly on the floor (if lying down). Keep your legs a comfortable distance from each other. Let your feet lie on the floor in whatever way feels natural. Let your arms rest in a comfortable position on the arm rests of the chair or on your thighs (if sitting)/on the floor (if lying down). Close your eyes and take a deep breath. Concentrate only on yourself. Tune everything else out. This room is starting to disappear, bit by bit, from your awareness. (Pause . . .) The voices around you are fading to the background. (Pause . . .) If distracting thoughts come to your mind, let them come and go away from your consciousness. Concentrate only on yourself, on your body, your breath. Let your breath flow in and out at its own pace. Notice that each time you exhale, you become more and more relaxed. Your body is feeling heavier, pressing against the chair/floor.

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Step 2: Muscle relaxation

We will relax our bodies by first tightening and then relaxing groups of muscles. We will go through each group of muscles twice: first tightening the group of muscles, then letting them relax. When tightening the muscles, try to use only those muscles that I ask you to tighten. Let the rest of your body remain relaxed.

Note for group leader

Talk faster when you instruct participants to tighten muscles and more slowly when you ask them to relax muscles. Allow participants to tighten each group of muscles for about 5 seconds. 1. Let’s start by concentrating on your right leg. Tighten the muscles in the leg by straightening the leg and bending the ankle. Feel the tension in the foot and the leg. Now let the muscles relax. Feel the difference between the tension in the muscles before, and the relaxation now. Tighten the muscles in the leg and foot one more time: straighten the leg and bend the ankle, hold . . . And relax again. Let the muscles in the leg and foot relax more and more. 2.

Concentrate now on your left leg. Tighten the muscles in your left leg by straightening the leg and bending the ankle. Hold that tightness and feel the tension in the foot and the leg. Now let the muscles relax. Observe the sensation of relaxation in the muscles. (Repeat tightening and relaxing.)

3. Now concentrate on your bottom. Tighten those muscles. Keep tightening them. Now, let those muscles relax. (Repeat tightening and relaxing.) 4.

Concentrate now on the muscles in your back. Straighten your back by pulling your shoulders back toward the backbone. Feel the tension in your back muscles. Now let your back muscles relax again. Stay relaxed and let the sensation of relaxation spread through your whole back. (Repeat tightening and relaxing.)

5.

Direct your attention now to your abdominal muscles. Push the lower part of your back tightly (against the back of the chair/ against the floor) by tightening up your abdominal muscles. Hold the muscles tightly and feel the tension in your abdomen. Now let the abdominal muscles relax again. Observe the warm sensation of relaxation in your abdomen. (Repeat tightening and relaxing.)

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6. Next, concentrate on your arms and hands. Tighten the arm muscles by straightening both arms and making fists with your hands. Hold the muscles tightly and feel the tension in your arms and hands. Let your arms and hands relax again. Let your arms rest comfortably and feel the warmth of relaxation. Let the sensation of relaxation get deeper and deeper. (Repeat tightening and relaxing.) 7.

We will now move to the neck muscles. Tighten your neck by pushing the back of your head (against the back of the chair/ against the floor) and your chin towards your chest. Keep the neck muscles tightened. Now let them relax again. Feel the relaxation spread to your neck and your shoulders. (Repeat tightening and relaxing.)

8.

Direct your attention now to your face and forehead. Wrinkle up your forehead and face; keep the muscles tightened. Now let your forehead become smooth and relaxed again. As your forehead muscles relax, let your mind relax as well. (Repeat tightening and relaxing.) Now that we have gone through all of the major muscles in your body, you can concentrate on the sensation of relaxation in your body as a whole. Let yourself relax more and more deeply (longer pause.)

Step 3: Breath control

Now I’d like you to concentrate on your breathing. Direct your attention to how the air flows in and out, in and out. Breathe deeply a few times. Let the air flow into the lowest parts of your lungs. Let your breathing flow at its own pace again. Concentrate on your exhalation. Notice that each time you exhale, your body relaxes more and more. Feel the sensation of calmness spreading through your mind when you exhale. Just let the breath flow. . . (Pause. )

Step 4: Visual imagery

Let’s deepen the state of relaxation with the help of a mental picture. Imagine that you are in a place where you feel good. You could be at the seaside, in a forest, in a meadow in the sunshine, or in some other place that is especially important and safe for you and in which you feel good. In your imagination go to that place and imagine that you are lying or sitting in that place right now.

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Let this place become as vivid to you as possible. Is it warm or cold around you? What do you see? Do you see sky, trees, plants, animals, people? What do you hear? Do you hear voices from nature, animals, people, or music? What sensations do you feel in your body? How do your hands feel? How about your skin, your face? What smells are in the air? What do you feel? Keep a clear image of this place in your mind. Observe your state of relaxation. Associate this place with the sensation of relaxation. During the next few minutes I will be quiet so that you can concentrate on relaxation (pause for about 2 minutes.) This place will become a place you can always come back to when you want to relax. Step 5: Coming back

Now I would like you to begin to prepare, little by little, to come back from this relaxing place of yours to the room we are in. Let the normal muscle tone flow back into your body. You can start by moving your hands a little. Stretch and shake other parts of your body too. Observe how each inhalation gives you renewed energy. Breathe in deeply a few times and open your eyes.

Step 6: Discussion

Ask the participants what their experiences were like. • How did you feel during this exercise? • Was it easy to concentrate? • Which of the three ways of relaxing (muscle relaxation, breath control or visual imagery) did you find the most effective?

This relaxation exercise is adapted from Psychologische Interventionen bei der ParkinsonErkrankung: Ein Behandlungsmanual by Michael Macht and Heiner Ellgring. Reproduced by permission of W. Kohlhammer GMBH.

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Part 4 Homework (Option 1): Trying Out Alternative Ways of Thinking

1:15’ – 1:30’

Goals: •

To learn to apply stress-reducing methods to daily life. Contents

Instructions

Step 1: Choosing a stress-reducing thought

Ask each participant to choose one alternative, stress-reducing thought that fits either the example of a stressful situation that they brought to the session (appetiser), or one of their other frequently experienced stressful situations. Although alternatives generated by the group in the previous exercise or examples from the Guidelines for Alternative Ways of Thinking in Stressful Situations can be used, emphasise that the most effective alternatives are often formulated by the person herself/ himself. For this homework, one alternative thought is sufficient.

Step 2: Making a reminder card

Each participant should choose one blank (coloured) card and write her/his chosen stress-reducing thought on the card.

Example

For example, if a participant finds it stressful to leave late for doctors’ appointments because her partner is so slow, she could write on her card: “If we are late, it’s not the end of the world.” Encourage participants to share what they have written on their cards with other participants (if time allows).

Step 3: Using the reminder card

Instruct participants to keep the reminder card with them (for example in their pocket, wallet or handbag) and ask them to try to identify situations that are stressful as they approach or occur. At those times, they should take out the reminder card and read what they have written for this situation. If it is not possible to take out the card in the situation they can instead just think about the card, and about the alternative thought that they wrote down. Suggest that if participants do not spontaneously find themselves in the stressful situation for which they have written the card, they could deliberately expose themselves to that situation (for example, going to a supermarket with the person who has PD, even if they normally do not do this often) during the period before the next session.

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Hand out Instructions for Homework: Session 4 – Trying Out Stress-Reducing Thinking.

Handouts

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Instructions for the Homework: Session 4 – Trying Out StressReducing of Thinking Guidelines for Alternative Ways of Thinking in Stressful Situations

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Part 4 Homework (Option 2): Daily Relaxation Training

1:15’ – 1:30’

Goals: • To learn to apply relaxation training to daily life.

Contents

Instructions

Instructions for daily relaxation training

Ask participants to practise relaxing using the relaxation exercise every day.

Homework at basic level

Performing the relaxation exercise at the “basic” level requires 1−5 minutes per day.

Homework at advanced level

Performing the relaxation exercise at the “advanced” level requires 15 minutes per day. Hand out Instructions for the Homework: Session 4 – Daily Relaxation Training. Ask participants to think about which level of exercise they will be able to do and when and where they will best be able to complete the exercise. They should write down the time of day on the homework sheet. Ask if anyone has any questions. Instructions for the Homework: Session 4 – Daily Relaxation Training

Handout

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Part 5 Appetiser: Carer’s Challenge Goal: • To help participants become aware of changes in their mood.

Contents Observe your mood

Instructions During the coming days, try to observe whether you experience any feelings of anguish, sadness or nervousness. Hand out Instructions for the Appetiser: Session 5 Instructions for the Appetiser: Session 5

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Session 4: Stress Management Materials For both options: ❏

❏

Negative and positive stress circles (to be shown on OHP, printed as handout, or made into slides) Instructions for the Appetiser: Session 5

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Guidelines for Alternative Ways of Thinking in Stressful Situations Examples of Stress-Increasing and Stress-Reducing Thoughts Instructions for Homework: Session 4 – Trying Out Stress-Reducing Thinking

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Guidelines for Relaxation Instructions for Homework: Session 4 – Daily Relaxation Training

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Stress circles

Negative stress circle THINKING: Stress-increasing thoughts and self-instructions

BODILY SENSATIONS: Bodily tension

FEELINGS: Tension Irritability Anxiety

Positive stress circle THINKING: Stress-reducing thoughts and self-instructions

BODILY SENSATIONS: Bodily relaxation

FEELINGS: Calmness Confidence

The stress circles are adapted from Psychologische Interventionen bei der Parkinson-Erkrankung: Ein Behandlungsmanual by Michael Macht and Heiner Ellgring. Reproduced by permission of W. Kohlhammer GMBH.

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Guidelines for Alternative Ways of Thinking in Stressful Situations When you feel stressed, it is essential to make a distinction between: 1. The situation in which you experience stress (for example, leaving late for a visit to the doctor’s). 2. Your thoughts, self-instructions – in other words, what you silently say to yourself about the situation and your ability to cope with it (for example, “oh no, now we’ll never make it!”). 3. Your reactions, such as bodily tension, feelings of nervousness, avoidance behaviour. When you feel stressed, it is not a result of the situation itself, but of your thoughts. In order to diminish feelings of stress, you must therefore change your way of thinking. In order to change your way of thinking, you must first become aware of it. By observing the way you “talk” to yourself in stressful situations, you can become aware of your thoughts. The next step is to start changing your thoughts. When you catch yourself thinking in a stress-increasing way, you can start to intentionally replace your stress-increasing thought with a stress-reducing thought. The table on the second page of this handout shows some examples of stress-increasing thoughts (left column) and stress-reducing alternatives (right column). You can use them as a model when formulating your own stress-reducing thoughts. Your way of thinking may seem almost automatic because you have probably thought that way for a long time. With systematic practice, however, you will find that it is possible to change your thoughts and reduce stress.

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Examples of Stress-Increasing and Stress-Reducing Thoughts

Stress-increasing thought:

Alternative, stress-reducing thought:

I can’t do this.

• I can manage this. • I’ll do this as well as I can – that is good enough.

We’ll never manage to get there on time when she/he is so slow.

• • • •

We’ll take the time that we need. There is time. Even if we are late, that is not the end of the world. Let them wait!

I can’t bear this.

• I am doing fine.

I must sacrifice myself again.

• I have the right to think of my own needs too. • No! I don’t have to do it.

I must . . .

• I don’t have to . . . • I can also . . . • Would it be possible to . . .

I feel nervous.

• It is OK to feel nervous. • I can breathe deeply and calmly.

I must succeed.

•

There’s nothing I can do about it.

•

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It’s not so important, even if this doesn’t work perfectly. • Why must I? Does it really matter? Let me think about what I could do before jumping to conclusions.

Session 4: Stress Management

Guidelines for Relaxation Being able to relax is an important way to counteract the effects of stress. Relaxation is a skill that can be learned. Systematic practice can improve the ability to relax, even in difficult situations. The following hints may be helpful for such practice: 1. Allow yourself to relax. 2. Allocate time for relaxation. Reserve a specific time for relaxation, for example 15 minutes every evening. 3. Select a quiet place where you will not be disturbed. Close the door, switch off telephones and ask your family members not to disturb you. 4. Get in a comfortable position. You can lie down or sit in a comfortable chair. 5. Concentrate. Switch off your thoughts about the world around you, and direct your thoughts inwards. 6. Breathe out calmly. If you have difficulty concentrating, direct your attention to your breathing. 7. Practise regularly. The more you practise, the easier it will be to reach a state of relaxation. 8. Find your own way of relaxing. Try out different relaxation methods: tightening and relaxing groups of muscles, listening to your breathing, imagining a peaceful scene. 9. Try out different relaxation aids. If you like, you can put on relaxing music when doing relaxation exercises. You can also try out audiotapes/CDs designed to teach relaxation. 10. Enjoy yourself!

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Instructions for Homework: Session 4 Trying out Stress-Reducing Thinking (Option 1) Put the reminder card you made in this session in your pocket, wallet or handbag and keep it with you. When you are approaching a stressful situation, or when you are already in the situation, you can take out the card and read what you’ve written on it. If it is not possible to read the card in the situation, you can still think about what you wrote on it. If you do not find yourself in the stressful situation for which you planned the card (for instance, because you are in the habit of avoiding it), you could deliberately expose yourself to that situation in order to try out alternative thinking before the next session. Example: You wrote yourself a stress-reducing thought for the situation in which you and your partner are late leaving to go somewhere (for example, to visit somebody). Plan to go for the visit. Before you start to get ready read the alternative thought on your card.

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Instructions for Homework: Session 4 Daily Relaxation Training (Option 2) Try to practise relaxation training every day until the next session. Decide first what time of the day you will do your daily relaxation exercise: Each day, I will relax at o’clock. Before doing the homework for the first time, reread the instructions on the handout Guidelines for Relaxation that was given in the session. You may also want to have this homework sheet with you so that you can check what to do. You can choose between two homework levels. The basic level requires a minimum of one minute daily. The advanced level takes about 15 minutes daily and aims at a deeper state of relaxation. Homework at basic level: Take a 1−5 minute break from your obligations. (You don’t have to use a clock to keep track of the time.) Get in a comfortable position and switch off your everyday thoughts. Concentrate on listening to your breathing, focus on your exhalations. Let the breath flow at its own pace, and let yourself relax every time you exhale. Homework at advanced level: To do this homework you need about 15 minutes for yourself. 1.

Start by concentrating on your breathing. Notice that every time you exhale, you feel more and more relaxed. 2. Tighten and relax groups of muscles in the same way as we did in the session. Tighten the muscles first for about 5 seconds and then relax. Go through the following groups of muscles: – right leg – left leg – bottom – back – abdomen – arms and hands – neck – face and forehead 3. Repeat tightening and relaxing one more time. 4. Let yourself rest for a while. Concentrate on breathing out calmly again. If you like, you can think of your relaxing place: imagine that you are in your favourite place and that you feel relaxed. 5. To come back from the state of relaxation, start by inhaling deeply a few times. Become aware of the noises around you, move your legs and arms a bit. Concentrate on how it feels to breathe in deeply. Notice the renewed energy it brings you. Slowly open your eyes.

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Instructions for the Appetiser: Session 5 The topic of the next session is the Carer’s Challenge. In preparation for this session, try to observe whether you experience any feelings of anguish, sadness or nervousness during the next few days.

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Session 5: Management of Anxiety and Depression (for People with PD) and The Carer’s Challenge (for Carers) Àngels Bayés Rusiñol, Mari Cruz Crespo Maraver and Anna Prats París

Patient Education for People with Parkinson's Disease and their Carers: A Manual. Edited by Marcia Smith Pasqualini and Gwenda Simons. Copyright © 2006 John Wiley & Sons, Ltd.

Session 5: Anxiety and Depression

The content of this session differs significantly for carers and people with Parkinson’s disease (PD). The session content is therefore described in separate sections for each group.

People with PD In this session, people with PD learn how to distinguish between serious emotional problems (affective disorders) and normal reactions to the disease. They also receive information about the symptoms of anxiety and depression, ways to deal with these symptoms, and the relationship between emotional changes and PD. The focus in this session is on both anxiety and depression because they so frequently occur together in people with PD, although greater emphasis is given to depression.

Carers Carers learn about the possible impact of PD on the family and discuss psychosocial resources to help deal with these issues.

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Session 5: Management of Anxiety and Depression Overview During this session, participants learn about depression and anxiety, the relationship between these symptoms and PD and how to deal with them. Different types of thoughts and behaviours that are associated with emotional discomfort are explored in an exercise. This practice is continued at home.

Materials ❏ ❏

Relevant handouts Flip chart, markers Part

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Discuss homework Stress management Active Information Management of anxiety and depression

Exercise Increasing feelings of wellbeing Homework

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Appetiser Social Competence

Contents Option 1: Discuss experiences with recent stressful situations (Trying Out Alternative Ways of Thinking) Option 2: Discuss experiences practising the Daily Relaxation Training Definition: What are anxiety and depression? What is the difference between a serious disorder and a normal reaction to disease? Importance of understanding the nature, causes and treatment of anxiety and depression in PD Guidelines: List of practical suggestions for dealing with feelings of anxiety and sadness Option 1: Positive thoughts Option 2: Maintaining healthy activities Option 1: Thinking of a positive event Option 2: Maintaining healthy activities Noticing situations in which you would like to express your thoughts and feelings but do not have the confidence to do so

Up to 0:30’

Up to 0:50’

Up to 1:20’

Up to 1:30’

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Part 1 Discuss Homework: Stress Management

0:30’

Goal: • To support the application of knowledge and skills from the previous session (Stress Management) in everyday life.

Contents

Instructions

Discuss homework Stress Management

Ask the participants to describe briefly their experiences with the homework given in the previous session – trying out stressreducing ways of thinking in a real-life situation and using the reminder card made in the session.

Option 1: Trying out alternative ways of thinking

You could ask such questions as: • What did you write on your card in the last session? • Did you take out the card and read it, or simply think about it? What effect did it have? • Did you experience any problems doing the homework? Do you have any suggestions for how these problems could be solved? (Ask other group members for suggestions.) • Are there other stressful situations for which you would like to practise alternative ways of thinking? It is often easier for the participants to talk about their behaviours (what they did in a situation) than about their cognitions (what they thought). Participants often emphasise the behavioural solutions and strategies they use to deal with stressful situations. If this happens, try to help participants become aware of their stressreducing thoughts by asking specific questions about them while still paying attention to the practical solutions they used to deal with their problems. Encourage participants to continue observing and changing their ways of thinking in stressful situations in the future. Remind them that keeping a card handy is one good way to remember alternative thinking strategies, especially in the beginning. With time, the card will no longer be needed. Explain that the past session, current session and the next session (Stress Management, Management of Depression and Anxiety, and Social Competence) all draw on the idea of distinguishing between situation, thoughts and reactions.

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Option 2: Daily relaxation training

Patient Education for People with PD and their Carers

Ask the participants to briefly describe their experiences with the homework given in the previous session: practising daily relaxation. • When and where did you practise the relaxation exercise? • How did you arrange to have time for yourself? • What kinds of experiences did you have? How did you feel afterwards? • Did you have any problems doing the relaxation exercises? Do you have suggestions about how these problems could be solved? If participants found it difficult to relax you can suggest aids to relaxation, such as audiotapes/CDs with instructions. If participants say that they did not have time for relaxation, remind them that they need a minimum of only 1 minute and that relaxation has many positive effects. Encourage participants to continue to practise relaxation regularly. Through practice, relaxation becomes easier and easier. Refer to the current session’s theme (Management of Depression and Anxiety) and tell participants that relaxation can also be used to deal with feelings of anxiety and to help prevent depression. Additional methods will be discussed in the current session.

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Part 2 Active Information: Management of Anxiety and Depression

0:30’ – 0:50’

Goals: • To learn how to distinguish serious affective disorders from normal reactions to PD. • To understand the relationship between feelings of sadness and anxiety and PD and to learn what treatments are available.

Contents Examples from the group

Instructions To start the session, encourage the participants to discuss the following questions: • What are anxiety and sadness? • Why do we have these emotions? • When do feelings of anxiety and sadness become a problem?

Definition: What are anxiety and sadness?

Anxiety and sadness are emotional responses of our bodies to help us adapt to difficult situations. When a person is diagnosed as suffering from a neurological disease it is normal to feel sad or anxious. In fact, these are emotions that allow us to prepare for action, to face up to the situation through physiological changes in the body. Sometimes our emotional responses are too strong or go on longer than is necessary to help us face up to the problem. In this case, our reactions can be harmful, and can lead to problems.

Examples from the group

Flip Chart

Can anyone tell me what the most common reactions are when we feel anxious or sad for a long period of time, or when the anxiety or sadness is very intense? Write examples from the group on a flip chart. Check whether the following problems (see table) are included and add to the list any that are not mentioned by the participants.

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Examples Flip Chart

PHYSICAL headaches

PSYCHOLOGICAL grumpiness

high blood pressure

irritability

muscular tension

concentration difficulties

stomach upset

sadness

circulatory disorders

pessimism

sleep disorders

loss of self-esteem negative thoughts

Examples from the group

Can anybody think of negative thoughts that often accompany feelings of sadness or anxiety? Do these thoughts influence our behaviour? In what ways?

Flip Chart

Write examples from the group on a flip chart in two columns (“Negative thoughts” and “Changes in behaviour”). Some examples might be: NEGATIVE THOUGHTS

CHANGES IN BEHAVIOUR

I am useless

Stop doing things

Nothing that I can do will change my disease

Don’t follow the treatment correctly

I will no longer be able to go out with my friends

Refuse invitations to go out

I am going to end up in a wheelchair

Stay at home and stop going out

Everyone will realise that I’ve got Parkinson’s

Stay at home

The effect of the medicine will wear off and I won’t be able to move

Avoid being on my own

It is important to focus on the bidirectional relationship between negative thoughts and changes in behaviour – thoughts affect behaviours and behaviours affect thoughts. Highlight the importance of identifying negative thoughts. Examples from the group

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Ask each participant to briefly describe their mood during the past week (referring to the Appetiser given in the previous session).

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Distinguishing between feelings of anxiety/ sadness and affective disorders

Can anyone tell me how you can know if your feelings of anxiety are normal? How do you know if the sadness you feel is normal? Discuss participants’ opinions. Anxiety Anxiety is a normal emotion that we feel when faced with particular situations or thoughts. It is characterised by feelings of nervousness, tension and agitation, and may be accompanied by heart palpitations, sweating, trembling, or upset stomach. If these symptoms are long lasting or are so strong that they prevent you from leading a normal life, you should seek the advice of a professional. Sadness/Depression When certain difficult situations occur it is normal to feel sad. However, if this feeling of sadness persists, or is very intense, you might be suffering from a depressive disorder. Depression is a mood disorder that is characterised by some or all of the following symptoms: • feeling sad for most of the day • loss of interest in things, people and activities • loss of appetite • problems getting to sleep • tiredness • a feeling of uselessness • concentration problems • thoughts of wanting to die It is important to consult a professional if you experience several of these symptoms nearly every day. Keep in mind that although PD is not curable at the present time, most emotional problems that occur with it can be treated.

Examples

The first example is Mr Johnson. He didn’t know anything about PD when he was first diagnosed one year ago. He remembers that at first he was shocked when doctors told him that PD had no cure and that it would get worse over time. He spent the first few days crying, had trouble sleeping and was very irritable with his family. However, these problems gradually went away as the days went by and he read and learnt more about the disease. Now he thinks that PD affects people in different ways and that it is still possible to enjoy many things. Mrs Smith, on the other hand, stopped going out with her friends as soon as she was informed of the diagnosis of PD six months ago. She makes excuses to keep from seeing them or speaking with them on the telephone. She feels profoundly unhappy − she thinks that from now on everything will go badly for her, she has lost her appetite, she sleeps badly, she can’t concentrate on anything, and she is very worried about the future.

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Discuss these two examples, noting that Mr Johnson displays thoughts, behaviour and emotions that are characteristic of a normal reaction to the disease, whereas Mrs Smith shows significant signs of depression, and should seek professional treatment. Examples from the group

Can anyone tell me whether they think anxiety and depression are common in PD? If so, why are they so common? Discuss participants’ opinions.

Understanding the causes of anxiety and depression in PD

Research suggests that these emotional disorders are very common in PD when compared with other groups of people with similar levels of physical disability. It is currently thought that between 40 % and 50 % of people with PD are depressed, although different studies have found figures ranging between 4 % and 70 %. Research shows that anxiety and depression are strongly related to each other in PD. In other words, most people with PD who suffer from depression also suffer from anxiety.

Treatment of anxiety and depressive disorders

Examples from the group

Usually when people with PD have these emotional problems, they are regarded as reactions to the physical limitations of the disease. However, anxiety and depressive disorders may occur for different reasons: • because a person has not adapted to the changes produced by the PD • as a direct result of the biochemical changes that are characteristic of PD • a combination of these factors Can anxiety and depressive disorders be treated? If so, how? Discuss participants’ opinions. Although PD itself is not curable at the present time, these emotional disorders can be successfully treated in a high proportion of cases. Depression is the factor that has the greatest impact on the quality of life in PD, and can contribute to problems with thinking and memory. (Note that cognitive problems do not occur in everyone with PD.) Health professionals can recommend the most suitable treatment. There are several treatment options for depressive and anxiety disorders, including medication, psychological treatment, or a combination of different methods. Hand out Practical Suggestions for Dealing with Feelings of Anxiety and Sadness Go through and discuss the suggestions described in the guidelines. Encourage participants to propose other suggestions. Practical Suggestions for Dealing with Feelings of Anxiety and Sadness

Handout

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Part 3 Exercise: Learning to Cope with Negative Thoughts and Dysfunctional Feelings 0:50’ – 1:20’ Related to PD Goal: • To learn to apply information about anxiety and depression in daily life. Contents

Instructions

Notes for group leaders

It is important to adapt the practical exercises to the level of the participants, taking into account their ability to write, capacity for introspection, cognitive level and other factors. For this reason, two different exercises are presented: Option 1: Cognitive approach. Option 2: Behavioural approach (a practical style concentrating on behavioural strategies). If time allows, exercises from both approaches can be used in the session.

Option 1, Step 1: Exploring worries

Divide the group into two or three subgroups, and give each subgroup a worksheet (What Worries Me?) with the following question: “What worries me?“ Ask the subgroups to write down at least one comment from each participant for each question. Have a member of each subgroup read their comments to the larger group and ask all participants to discuss their experiences. For example, participants can discuss whether they share any of the worries described, whether they have had these concerns at any time since the onset of the disease and what other worries they may have.

Step 2: Identifying negative thoughts

We will now hear the story of a woman who has been affected by PD for several years. Through her testimony, she explains to us her experiences, feelings, attitudes and ways of behaving while faced with the disease.

Note to group leader

(Note: If available, you can instead show video excerpts of an actual interview with a person with PD, as long as the content is similar to the current transcript.) Read aloud the Transcript of an Interview with a Woman with PD. Depending on the group, the transcript can be given to the participants to read along. Did any of the woman’s comments surprise you? Discuss participants’ comments. 157

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Step 3: Generating positive thoughts about the present situation

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Explain the relationship between thoughts and emotions, reminding participants of the content of Session 4, Stress Management: Remember that situations themselves are not stressful (as explained in the previous session, Stress Management). Rather, how we interpret (think about) the situations is most important. It is particularly important to recognise automatic stress-increasing thoughts, and to try to think of alternative thoughts that may be more likely to reduce stress. Ask participants if they can identify with the examples given in the interview, and whether they have ever experienced similar negative thoughts. Explain that some negative thoughts form part of the process of adaptation to PD. Encourage participants to try to notice these thoughts when they occur and to counteract them by focusing on positive aspects − the things that are going well.

Flip Chart

Bring up negative thoughts that are frequently associated with PD, using examples from the interview. Then mention any positive thoughts the woman described. Finally, ask participants for additional positive thoughts that might help her. Write on the flip chart: • Woman’s negative thoughts • Woman’s positive thoughts • Other positive thoughts from the group Negative thought: I will have to be looked after and I will be a burden to others. Woman’s positive thought: I can’t spend all my time thinking about the bad things that could happen to me. Other positive thoughts that could help her (example): Perhaps it will not happen exactly like that. Worrying about all the problems that may or may not occur is not going to help me now. Ask participants for additional positive thoughts and write them on the flip chart. Negative thought: I am going to end up in a wheelchair. Woman’s positive thought: Maybe my disease will not progress in that way. Other positive thoughts that could help her (example): Whatever happens in the future, I will be able to deal with it then. Ask participants for additional positive thoughts, and write them on the flip chart.

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Flip Chart Option 2, Step 1: Exploring experiences and maintaining activities

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To finish off the exercise, ask the group to reflect upon the advantages and disadvantages of anticipating problems. Encourage them to generate positive thoughts about their present situation, focussing especially on how these thoughts may reduce discomfort and help them to adapt to life with PD. Divide the group into two or three subgroups, and give each subgroup the worksheet Changes in Activities Due to PD, asking them to think about these two questions: • What have I stopped doing as a result of the disease? • What have I started doing as a result of the disease? Ask the subgroups to write down at least one comment from each participant for each question. Have the participants read the comments to the group, whilst you write them down on the flip chart in two columns, “Stopped doing” and “Started doing.”

Flip Chart

Step 2: Additional examples

Ask participants to discuss the advantages and disadvantages of the changes described in each column. This exercise serves as an introduction to the idea that although PD represents a progressive change in lifestyle, it is important to keep engaging in activities as much as possible in order to avoid feelings of low self-esteem and to prevent depression. Remind participants about the relationship between mood and activity, referring back to the content of Session 3: Pleasant Activities. In a brainstorming session, encourage participants to suggest different types of healthy activities (physical, mental and social activities) that increase self-esteem and reduce feelings of sadness and anxiety, such as relaxing, engaging in social activities and maintaining social relationships. Write the healthy activity and the positive emotions associated with it on the flip chart, in two columns: • Activity (in the left column) • Pleasant emotions (in the right column).

Handout

What Worries Me Changes in Activities Due to PD

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Part 4 Homework: Focusing on the Positive and Maintaining Healthy Activities 1:20 – 1:30’ Through Self-Reinforcement Goal: •

To apply to daily life the principles of increasing positive thoughts and maintaining activities.

Contents

Instructions

Homework Option 1: Thinking of a positive event

1. Thinking of a positive event.

Option 2: Maintaining a healthy activities

2. Maintaining healthy activities.

For the next session, ask each participant to think about a positive upcoming event or the memory of a positive event in the past and then to complete the Reminder Card: A Positive Event. Ask the participants to think of three or more healthy activities they would like to do during the time between sessions and to write them down on the Maintaining Healthy Activities worksheet. Explain that after they engage in each activity they should complete the second part of the worksheet by writing down any positive feelings they experienced. Remind participants to congratulate themselves for having attempted to carry out their objectives, whether or not they were successful. Option 1: Reminder Card: A Positive Event

Handouts

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Part 5 Appetiser: Social Competence

1:25’ − 1:30

Goal: • To help participants become aware of their experiences in situations in which they want to express their thoughts and feelings but do not have the confidence to do so.

Contents Observing your own behaviour in a social situation

Instructions Please make a note of situations in which you would like to express your thoughts and feelings but do not have the confidence to do so.

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Session 5: Management of Anxiety and Depression Materials ❏ ❏ ❏ ❏ ❏ ❏

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Practical Suggestions for Dealing with Feelings of Anxiety and Sadness What Worries Me? (worksheet for Option 1) Changes in Activities due to PD (worksheet for Option 2) Reminder Card: A Positive Event Maintaining Healthy Activities Transcript of an Interview with a Woman with PD

Session 5: Anxiety and Depression

Practical Suggestions for Dealing with Feelings of Anxiety and Sadness On this sheet are several practical suggestions that may help you to feel better. If you have additional suggestions, please add them to the bottom of the list.

1. Organise your time. Diaries and timetables are good tools to help you. We recommend that you reserve time during the day for yourself so that you can do specific activities without any hurry. 2. Engage in some form of physical exercise. Set aside time during the day to go for a stroll and enjoy the sun or practise gymnastic exercises specifically developed for people with PD. 3. Perform mental exercises. Exercising your mind is as important as exercising your body. Engage in activities such as word puzzles, crosswords or reading, every day. 4. Keep in contact with the world around you, by reading newspapers and magazines, watching or listening to the news, or surfing the internet. 5. Plan realistic objectives, step by step. 6. Engage in interesting activities. Look for activities that you enjoy and that make you feel good. You may want to develop new hobbies (such as listening to music, playing dominoes, playing card games, going to the cinema or painting). 7. Don’t worry if pleasurable daily activities take more time than before: if you are still physically able to do them, go ahead! 8. Follow a healthy diet. Healthy food means a healthy body and mind! 9. Do not overindulge in substances that can make you feel nervous, such as coffee, tea or alcohol. 10. Keep in touch with friends and family through visits, telephone calls, letters or emails. 11. Engage in activities that help you relax, such as meditation, yoga and having a massage. 12. Get enough sleep, but don’t overdo it. Try to sleep/rest for an adequate number of hours each night (minimum of approximately 7 hours per night but not more than 9 hours per night). 13. Plan activities that require little effort for your ‘off’ moments. 14. Avoid self-medication. Instead, talk to your doctor. 15. 16. 17. 18.

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Worksheet for Exercise Option 1, Step 1:

What Worries Me? Please write down at least one thing for each group member that worries him or her. Discuss it amongst yourselves before sharing the comments with the rest of the group

Worry 1:

Worry 2:

Worry 3:

Worry 4:

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Worksheet for Exercise Option 2, Step 2

Changes in Activities Due to PD Please write down at least one activity for each group member that he or she has stopped doing as a result of PD, and one activity that he or she has started doing. Discuss it amongst yourselves before sharing the comments with the rest of the group. Things that we have stopped doing as a result of the disease: •

•

•

Things that we have started doing as a result of the disease: •

•

•

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Reminder Card: A Positive Event Our emotional state is closely connected with our thoughts. We can improve how we feel by managing our thoughts. Thinking positively will help us to feel better. In order to increase positive thoughts, the task for the next session is to think about a positive event (upcoming or past) and your thoughts and feelings related to this event.

My positive event is ..................................................................................................... ...................................................................................................................................... and the positive thought is .......................................................................................... ...................................................................................................................................... ...................................................................................................................................... I feel ............................................................................................................................. ...................................................................................................................................... ......................................................................................................................................

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Maintaining Healthy Activities To increase feelings of wellbeing, we recommend that you engage in healthy activities (physical, mental and social activities). These activities can be pleasant, social or relaxing activities; activities related to work and daily living; therapeutic activities or activities related to self-care; activities that increase self-esteem and reduce feelings of sadness and anxiety. When we feel sad or distressed, we tend to think only about what we didn’t do well, or what we could have done better. We minimise the importance of what we did do even if it has taken great effort. For this reason it is essential to pay attention to what we do well and give it importance, and then to reward ourselves for our progress. This sheet is designed to help you engage in healthy activities and recognise what you do well! Here you have some examples from a woman with PD. After engaging in the activity described on the left side of the table, she wrote down her positive feelings (right side of the table).

Healthy Activity

Self-congratulations!

1. Call my friend.

It wasn’t as difficult as I had imagined. I really enjoyed chatting with Laura and she was also happy to hear my news. She suggested that we meet on Tuesday. I am happy that I accepted her invitation. We will have a good time.

2. Look at photos of my daughter’s wedding.

It had been a long time since I had looked at these photos. It was pleasant to remember such beautiful and meaningful days in my life, like a little journey into the past. On Friday I will look at them again together with my family. Perhaps we will have a laugh remembering some of the funny things that happened.

3. Practise a relaxation technique.

Although I sometimes think that relaxation doesn’t solve anything, it is true that when I finished the relaxation exercise I felt very calm and relaxed. You look at things in a different way when you are calm.

4. Have a massage.

I felt like a new person after my massage.

5. Dance with my husband.

At first I thought that I would feel a little awkward and l was nervous that people would be looking at me or that my legs would lock up, but once we started everything went well. For a few moments I forgot about everything and felt happy. If I feel well on Saturday I would like to go again.

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6. Talk to my doctor about medication.

Today I telephoned my doctor. She wasn’t able to talk but I was able to schedule an appointment for next week. I am glad that I decided to phone. She will help to clear up my questions.

Now choose three or more healthy activities that you would like to do this week, and write them down on the left side of the table below. After engaging in each of the activities, write down your positive feelings and congratulate yourself on the effort you made. Healthy Activity 1.

2.

3.

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Session 5: Anxiety and Depression

Transcript of an Interview with a Woman with PD Part 1 “I am a Parkinson’s sufferer. I have had the disease for 4 years. I was 60 years old when I was diagnosed. At first I was confused, then I was worried and later angry.” Part 2 “Suddenly I found that my legs became stuck. I was walking with short little steps and I was writing very badly. So I went to a doctor and he said to me that I might have Parkinson’s. Then I became very worried and I tried to find out more about the disease, although I had already heard about it. Later I felt sad and then I became very angry because I thought, ‘Look what an awful thing has happened to me.’ “I think that I haven’t got any choice in the matter, this has happened to me and there are worse things. I try to lead as normal a life as possible and I do my best to make sure that I’m always doing things so that I am not always thinking that I’ve got Parkinson’s, and so I can enjoy myself a little.” Part 3 “I knew quite a bit about Parkinson’s disease because I had a cousin who had gone through it and died. He couldn’t stop himself from drooling, he couldn’t walk, he was in a wheelchair, he could hardly talk. When they diagnosed me as having Parkinson’s disease I remembered how my cousin ended up and I thought, ‘Well, it’s your turn now, the same as him.’ You think to yourself, ‘What’s coming next? I will end up in a wheelchair, they will have to look after me.’ I would have liked to have been an ordinary old woman: to be able to look after myself and not to be a burden to others. These things aren’t very nice to think about. But I also think that I don’t need to worry, that I don’t know that I won’t die next year of a heart attack before getting to the wheelchair, or maybe my disease won’t evolve in that way and I won’t get to the stage of needing a wheelchair, maybe I’ll end in some other way and, in any case, I can’t spend all my time thinking about the bad things that could happen to me.”

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Patient Education for People with PD and their Carers

Session 5: The Carer’s Challenge Overview During this session, participants receive information about the possible impact of PD on family members and/or carers. Useful psychosocial resources are presented, together with examples and guidelines. Different ways in which attitudes and habits can protect the carer’s health are discussed. Coping strategies that can be used by carers are explored in an exercise and relaxing activities are discussed. This practice is continued between sessions at home.

Materials ❏ ❏ ❏

Relevant handouts Carers’ examples Flip chart, markers Part

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Discuss homework Stress management

Option 1: Discuss experiences with recent stressful situations (Trying Out Alternative Ways of Thinking) Option 2: Discuss experiences practising the Daily Relaxation Training.

Up to 0:30’

Active information Carer’s challenge

Definition: What is the carer’s challenge? What are possible problems with the carer’s own health, and changes in the carer’s own life, that can occur as a result of caring for someone with PD? Importance of recognising burnout Guidelines: How to help maintain the wellbeing of the carer

Up to 0:50’

Exercise

Increasing feelings of wellbeing: Preventing care-related health problems

Up to 1:20’

Homework

Task 1: Maintaining relaxing activities Task 2: Dealing with distressing situations

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Appetiser Social Competence

Noticing situations in which you want to express your thoughts and feelings but do not have the confidence to do so

Up to 1:30’

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Part 1 Discuss Homework: Stress Management

0:30’

Goal: • To support the application of knowledge and skills from the previous session (Stress Management) in everyday life.

Contents

Instructions

Discuss homework Stress management

Ask the participants to briefly describe their experiences with the homework given in the previous session: trying out stress-reducing ways of thinking in a real-life situation and using the reminder card made in the session.

Option 1: Trying out alternative ways of thinking

You could ask such question as: • What did you write on your card in the last session? • Did you take out the card and read it, or simply think about it? What effect did it have? • Did you experience any problems doing the homework? Do you have any suggestions about how these problems could be solved? (Ask other group members for suggestions.) • Are there other stressful situations for which you would like to practise alternative ways of thinking? It is often easier for the participants to talk about their behaviours (what they did in a situation) than about their cognitions (what they thought). Participants often emphasise the behavioural solutions and strategies they use to deal with stressful situations. If this happens, try to help participants become aware of their stress-reducing thoughts by asking specific questions about them while still paying attention to the practical solutions they used to deal with their problems. Encourage participants to continue observing and changing their ways of thinking in stressful situations in the future. Remind them that keeping a card handy is one good way to remember alternative thinking strategies, especially in the beginning. With time, the card will no longer be needed. Explain that the past session, current session and the next session (Stress Management, The Carer’s Challenge, and Social Competence) all draw on the idea of distinguishing between situation, thoughts and reactions.

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Ask the participants to briefly describe their experiences with the homework given in the previous session: practising daily relaxation. Option 2: Daily relaxation training

• When and where did you practise the relaxation exercise? • How did you arrange to have time for yourself? • What kinds of experiences did you have? How did you feel afterwards? • Did you have any problems doing the relaxation exercises? Do you have suggestions about how these problems could be solved? If participants found it difficult to relax, you can suggest aids to relaxation, such as audiotapes/CDs with instructions. If participants say that they did not have time for relaxation, remind them that they need a minimum of only 1 minute and that relaxation has many positive effects. Encourage participants to continue to practise relaxation regularly. Through practice, relaxation becomes easier and easier. Refer to the current session’s theme (The Carer’s Challenge) and tell participants that relaxation can also be used to deal with burden of care. Additional methods will be discussed in the current session

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Session 5: The Carer’s Challenge

Part 2 Active Information: The Carer’s Challenge

0:30’ – 0:50’

Goals: • To increase understanding of the possible impact of PD on the family and/or carer, by identifying medical and psychosocial factors that are related to the challenge of caring, and distinguishing negative effects due to this challenge from adaptive emotional responses. • To learn to recognise signs of burnout and how to take steps to maintain your wellbeing. Contents Examples from the group

Flip Chart

Instructions To start the session, encourage participants to discuss the following questions: • Have you noticed any problems with your own health as a consequence of caring for/living with a person with PD? • What changes have you noticed in your own life since the person developed PD? Write examples from the group on a flip chart. Parkinson’s disease is often accompanied by physical, emotional and economic problems that can affect the wellbeing of the family.

Carer’s challenge: Preventing the “burden of care”

Definition of the “burden of care”: The concept of the burden of care has been defined as the perception on the part of the carer that his/her health, social life and financial situation have been adversely affected as a result of living with a person with PD or his/her dedication to the care of a person with PD. The degree of burden on the carer is related to disease severity, to the number of hours devoted to caring, and to the presence of mental health problems in the person with PD. Other problems that might affect the person with PD that can add to the burden of care include sleeping disorders, depression, cognitive dysfunction and disordered thinking, all of which can make the carer feel uneasy. These problems can be more difficult to deal with than the motor symptoms of PD. The psychosocial impact of the disease on the carers is inversely related to the perception of social support: the lower the perceived social support, the greater the negative psychosocial impact.

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Each family member and family environment is different. For this reason, the burden experienced by the carer depends on the interrelationships amongst different medical and psychosocial factors (such as severity of PD, state of health, personality and coping style of the carer, coexistence of other important events, and economic resources). How can you distinguish adaptive emotional responses of the carer from negative effects of the burden of care? Encourage the participants to discuss this question, and write responses on a flip chart. Flip Chart

Recognising burnout

Answer: some negative emotions that you may experience are part of the normal adaptation to the disease (such as anger, guilt, sadness, fear) but if these emotions are maintained for a long period of time or at a high level of severity, they can interfere with your social and professional life, resulting in a state of “burnout.” It is important for you to learn to recognise your limits, to identify warning signs of burnout, and to ask for family, social and/or professional help. Hand out Guidelines for Recognising Signs of Burnout. Give the participants the opportunity to read the main points of the handout (or go through it together) and then discuss the warning signs of burnout. How can you cope with the effects of PD? What are your ideas?

Coping with the effects of the disease

There are many coping strategies that carers can use. Some of these strategies are recommended, but some are not. For example, a coping strategy that is not recommended is to become overinvolved with the disease (overprotecting the person with PD, devoting all of your time to the disease, blaming yourself when faced with problems). These attitudes can be accompanied by feelings of depression, worry and low self-esteem. They increase the risk of becoming overburdened and may also keep people with PD from being able to adapt to the disease themselves. Other coping strategies, shown on the handout, are more adaptive and are recommended. Hand out Suggestions for Maintaining the Wellbeing of the Carer Give the participants the opportunity to read the main points of the handout (or go through it together) and then discuss them.

Handouts

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Guidelines for Recognising Signs of Burnout Suggestions for Maintaining the Wellbeing of the Carer

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Session 5: The Carer’s Challenge

Part 3 Exercise: Preventing Caring-Related Health Problems

0:35’ − 1:05’

Goal: •

To explore strategies that carers can use to cope with PD. Contents

Instructions

Exercise: Acquiring healthier strategies for coping with PD

We will now hear the stories of three different people, each of whom has been living with someone with PD for several years. Experiences, feelings, attitudes and ways of coping with PD are explored in these interviews.

Notes to group leader

• If time is short, you can use only one or two of the interviews. • If available, you can instead show video excerpts of an actual interview with a carer of a person with PD, as long as the content is similar to the current transcript. Read aloud the Transcripts of Interviews with Carers. The transcript can be given to the participants as well to read along.

Step 1: Identifying attitudes and habits

Can you identify which attitudes potentially increase the carer’s risk of burden, and which attitudes may instead protect the carer’s health? Discuss participants’ comments. It is important to recognise that there is no such thing as the “perfect carer“. All carers have their own particular attitudes and habits that help them handle the disease, and these should be maintained. However, carers may also have other attitudes and habits that are potentially damaging. Learning how to identify these unhelpful attitudes is the first step in changing them. Did you identify with any of the people I read about? What things do you do or think about that help you to handle the effects of PD? Do you think that it would be helpful to change your way of coping with the disease in any way? Encourage participants to examine and consider modifying their coping style.

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Step 2: Learning to modify habits

In order to help prevent health problems as a result of living with/ caring for a person with PD, we recommend that you find time for yourself, and that you get enough rest, both mentally and physically.

Examples from the group

Encourage participants to continue to engage in activities that relax them. Help participants to “brainstorm” possible relaxing activities. You may want to remind them about what they learned in Session 3: Pleasant Activities. On the flip chart, write down examples of relaxing activities suggested by participants.

Is it difficult to find time for yourself? Which activities help you to rest, mentally and physically?

Flip Chart Step 3: Thinking about attitudes

It is important to recognise your own limits, to identify warning signs of burnout, and to allow family members, friends and professionals to help if necessary.

Examples from the group

Write down advantages and disadvantages of asking for help on the flip chart.

Why do we sometimes resist asking for help? What advantages and disadvantages are there in doing so?

Note that this subject will be dealt with in greater detail in Sessions 6 and 7.

Flip Chart

Handout

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Transcripts of Interview with Carers

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Session 5: The Carer’s Challenge

Part 4 Homework: Engaging in a Relaxing Activity and 1:05’ – 1:25’ Dealing with Distressing Situations Goals: • To increase carers’ ability to identify warning signs of burnout. • To promote strategies that will help carers cope with the effects of PD, and that will help prevent health problems.

Contents

Instructions

Homework Task 1: Maintaining relaxing activities

Relaxing activities can be helpful to carers. The first task for you to perform before the next session is to plan a relaxing activity and focus on your level of tension before and after doing that activity.

Homework Task 2: Dealing with distressing situations

The second task is to observe and record how you respond when faced with a potentially distressing situation.

Hand out the homework sheet entitled Maintaining Relaxing Activities. Go through the handout, ensuring that participants understand the task, and asking if they have any questions.

Hand out the homework sheets entitled Dealing with Distressing Situations, which includes an instructions/sample sheet and a worksheet. This chart will help you to observe what you do in distressing situations, and recognise ways you can cope. With the help of the chart, you can summarise the situation: the Antecedents (the situation, what was happening), your Behaviour (as well as thoughts and feelings), and the Consequences (how it ended). We will call this the ABC. Antecedents. Describe the situation as briefly and objectively as possible, as if you were observing the situation without direct involvement. The questions in the left-hand column may help you to describe the situation, What is happening? Where? With whom? For example: “My husband walked very slowly when we crossed the road.“ Write this information in Column 1 on your worksheet. 2. Behaviours. Observe how you responded to the situation. 1.

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In Column 2, reply to the question What did I think and feel? Try to answer the questions as truthfully as possible, without censoring your thoughts, and make particular note of whether your thoughts were “stress-increasing” thoughts or “stress-reducing” thoughts. For example: “I kept thinking that it will be even worse when the disease advances and that I won’t be able to put up with it. I felt very upset.” In Column 3, answer the question What did I do? Describe your observable behaviours in the situation. For example: ”I shouted at him!” 3. Consequences. In Column 4, briefly answer the question How was it resolved? For example: “Right after it happened, I felt guilty and cried.” In addition, describe whether this situation has enabled you to think of additional coping strategies that you could use to deal with the aftermath of this situation, or in the future, by answering the question How else can I deal with it now? For example: “This made me realise that I need to find time for myself” and “Sharing these feelings with members of the self-help group might make me feel better.” For more ideas, consult Suggestions for Maintaining the Wellbeing of the Carer. In Column 5, congratulate yourself on your efforts! If you did use an alternative coping strategy, write down the positive feelings that you experienced. Even if you did not, think about what you have learned from this situation. Answer the question: What positive consequences can I take from this experience? For example: “This is an experience I can learn from. I am glad I shared my feelings with others so that I will be able to cope better in the future. Nobody is perfect.” As explained in the previous session (Stress Management), situations themselves are not stressful. How we interpret the situations is essential. It is important to recognise automatic stress-increasing thoughts, and try to replace them with alternative thoughts about the specific situation, as was shown in the example.

Handout

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Maintaining Relaxing Activities Dealing with Distressing Situations

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Session 5: Anxiety and Depression

Part 5 Appetiser: Social Competence Goal: • To become aware of situations in which you want to express your thoughts and feelings but do not have the confidence to do so.

Contents Observing your own behaviour in a social situation

Instructions For the next session, please make a note of situations in which you want to express your thoughts and feelings but do not have the confidence to do so.

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Session 5: The Carer’s Challenge Materials ❏ ❏ ❏ ❏ ❏

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Guidelines for Recognising Signs of Burnout Suggestions for Maintaining the Wellbeing of the Carer Maintaining Relaxing Activities Dealing with Distressing Situations Transcripts of Interviews with Carers

Session 5: Anxiety and Depression

Guidelines for Recognising Signs of Burnout It is important for you to recognise your limits, to identify the warning signs of burnout, and to ask for family, social and/or professional help.

The following may be warning signs of distress: 1.

High level of concern about the future.

2.

Feelings of not having enough time for yourself.

3.

Feelings of being essential to the care of the person with PD.

4.

Feelings of lack of confidence and guilt due to the state of the person with PD.

5.

Loss of sense of humour and an increase in irritability.

6.

Decrease in interest in the “outside world”.

7.

Reduced participation in social and leisure activities.

8.

Excessive feelings of exhaustion.

9.

Feelings that you should be making more effort.

10.

An almost permanent feeling of loneliness.

11. 12. 13. 14.

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Suggestions for Maintaining the Wellbeing of the Carer In caring for a person with PD, try to avoid becoming overinvolved with the disease (overprotecting, devoting all your time to the disease, blaming yourself when faced with problems). These attitudes are often accompanied by feelings of depression, worry and low self-esteem. They may increase your risk of burnout, and ultimately may reduce the ability of the person with PD to deal with his/her disease. Below are suggestions for ways of coping with the disease: COPING WITH PARKINSON’S DISEASE 1.

Keep up with your social network.

2. Contact other people who are in a similar situation to share experiences and feelings. 3.

Find time for yourself.

4.

Take up some activity other than caring; get out of the house.

5.

Get enough sleep.

6.

Ask for help from family members, friends and professionals.

7.

Give yourself a reward for your efforts (for example, go for a massage).

8.

Learn from experience.

9.

Think about the things that are going well.

10. 11. 12. 13. 14.

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Deal with day-to-day issues rather than worrying about the future.

Session 5: Anxiety and Depression

Maintaining Relaxing Activities In order to prevent health problems as a result of looking after a person with PD, find time for yourself, and get enough rest (mental and physical). Common excuses NOT to take care of yourself are: “The important thing is that my partner is okay.” “It does not matter that I am tired.” “It would not be fair if I had a good time while my partner is not well.” “I’m not in the mood to do something fun.” It is important to set objectives − even very small ones − and to reward yourself for progress. Relaxing activities can be helpful for carers. In order to maintain your involvement in activities that relax you, the task for the next session is to plan a relaxing activity and to focus on your level of tension before and after engaging in the activity. To carry out the exercise: 1.

Describe the relaxing activity in the left-hand column (for example: go for a walk)

2.

In the second and third columns, write the date and the time that you will begin the activity (for example: “10 October, 5 p.m.”)

3.

Observe whether you feel tense or nervous. Imagine that you have a “tension barometer” that ranges from 0 to 10, where 0 means “I don’t feel any tension” and 10 means “I feel extremely tense”. Try to choose the number on the “tension barometer” that best represents your level of tension and nervousness at that moment. Now write this number in the fourth column.

4.

Do the relaxing activity that you have chosen.

5. At the end of the time period that you have set aside for your relaxing activity, observe your level of tension and nervousness again. Imagine the “tension barometer” that ranges from 0 to 10 (remember that 0 means “I don’t feel any tension” and 10 means “I feel extremely tense”). Choose the number on the “tension barometer” that best represents your level of tension and nervousness now, at this moment, and write it in the fifth column. 6.

In the last column there is a blank space for you to write down the positive feelings that you have felt. Remember that it is important to congratulate yourself for your efforts.

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ACTIVITY

DATE

TIME

LEVEL OF TENSION BEFORE (0 to 10)*

Taking a walk

10 Oct

5 p.m.

7

4

Although I sometimes think that taking a walk doesn’t solve anything, it is true that when I came back I felt very calm and relaxed. You look at things in a different way when you are calm. It is important to look after myself so that I can help others.

Playing with my grandson

12 Oct

12 noon

6

2

For a little while I forgot about the disease and I felt as if there are important things in life other than sickness.

LEVEL OF TENSION AFTERWARDS (0 to 10)*

*Level of tension: 0 = Not at all tense; 10 = Extremely tense

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SELFCONGRATULATIONS

Session 5: Anxiety and Depression

Dealing with Distressing Situations Instructions and Sample Sheet This chart helps you to recognise ways of coping with negative and distressing situations. It is also an exercise in learning how to handle difficult situations. When such a situation arises, try to remember to use the alternative coping strategies suggested in the session and on the handouts. Do not forget to congratulate yourself on your progress. 1.

A = Antecedents. Describe the situation (answering the questions in the first column on the left).

2.

B = Behaviours (and thoughts and feelings). Second column: Thoughts/Feelings. Observe what you were thinking and feeling (being sure to note any automatic negative thoughts). Summarise your thoughts without censoring them. Third column: Behaviours. Observe what you did, answering each of the questions in the third column.

3.

C = Consequences. Fourth column: What happened? Describe how the situation resolved, and whether this situation has enabled you to think of additional coping strategies for now or in the future (perhaps consulting the handout Suggestions for Maintaining the Wellbeing of the Carer). Fifth column: If you did use an alternative coping strategy, write down the positive feelings that you experienced. Even if you didn’t, think about what you have learned from this situation. Remember to congratulate yourself on your efforts!

On the next page is an example as a guide. Fill in your comments on the blank worksheet that follows.

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A: Antecedents 1 Situation

B: Behaviours (and Thoughts and Feelings) 2 Thoughts/Feelings

What was happening? Where? With whom?

What did I think and feel?

Example: My husband walked very slowly when we crossed the road.

4 Resolution

5 Congratulations!!

What did I do?

How was it resolved? How else can I deal with it now?

What positive consequences can I take from this experience?

Example:

Example:

Example:

Example:

I kept thinking that it will be even worse when the disease advances and that I won’t be able to put up with it. I felt very upset.

I shouted at him!

Right after it happened, I felt guilty and cried.

This is an experience I can learn from. I am glad I decided to share my feelings with others so that I will be able to cope better in the future. Nobody is perfect.

(Automatic stressincreasing inner speech, leading to feelings of distress.)

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3 Behaviours

C: Consequences

This made me realise that I need to find time for myself. Sharing these feelings with members of the self-help group might make me feel better.

(Alternative stress-reducing thought.)

Session 5: Anxiety and Depression

Dealing with Distressing Situations Worksheet

A: Antecedents 1 Situation What was happening? Where? With whom?

B: Behaviours (and Thoughts and Feelings) 2 Thoughts/Feelings

What did I think and feel?

3 Behaviours

What did I do?

C: Consequences 4 Resolution How was it resolved? How else can I deal with it now?

5 Congratulations!! What positive consequences can I take from this experience?

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Transcripts of Interviews with Carers Carer 1 My mother was diagnosed as having Parkinson’s disease about four years ago. I don’t live with her in the same house because I have my own family. I used to think of Parkinson’s disease as being something terrible. Now I still think that it is not a pleasant thing but perhaps because it is a slow disease, or because it is long, or perhaps because over time you start looking at it in a different way, I think that it’s a disease that you get used to and it becomes normal for you. You end up not remembering how things were before, and it lets you get on little by little from one day to the next. I think about the future and I would like to live close to her. I would like to live close to her so that I can come and go when I need to. Maybe it is selfish but I have young children and I don’t want to have to leave them to have to go and look after my mother far away. So I think that the most convenient thing to do in the future would be for me to go and live close to my mother so that I can help her without having to leave my children because although there are carers and people who help you, I think that it’s always appreciated more if they are members of your own family who are helping you. I want to make the time that she is well pleasant for her. I make the effort to go and have lunch at her house every day, go to see her every day and in this way I check up on her, make sure she has taken her pills, see how she feels . . . things that I am able to do at the moment because my children go to school. Diseases and problems normally unite you. They strengthen your bond with your family and the love and affection is multiplied because you show it more and you are more on top of everything that’s going on. Am I overloaded? No. For the moment I am able to separate my life from that of my parents. For the moment I am able to keep things apart. Perhaps in two or three years my ideas on this will be very different but for the moment I am able to go about my life and although I go and see my parents every day, these are things that you might do even if there wasn’t Parkinson’s disease in the middle of things. I think that the most important thing − the most important support that you can give − is your own love and affection, because I see that it is very depressing. I see how my mother doesn't want to go to certain places because she isn't able to eat well or because she isn't able to do up her shirt, or do basic things, and I think that if this happens to you, you must feel as if you have very bad luck because there are many things that you can't do or which you need to put a lot of effort into doing. When I imagine myself in her position I think that she must be very sad. So I think that you must give her love and affection, try and make her feel cared for because love and affection are the most important things. Carer 2 My husband is the person who is ill. His Parkinson’s disease started 9 years ago. We were both 50. We were living from day to day. I thought that the disease was going to remain stable or that it would progress ever so slowly. You’ve got to think that tomorrow is going to be the same as today or the same as yesterday. 188

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Right now he is really well. He can do everything for himself, he does lots of things and he seems great to me. I really hope that tomorrow he’s the way he is today. I haven’t stopped doing anything. I lead a normal life like I did before. I work, and I devote myself to my work. My husband is able to look after himself very well for everything. He goes out a lot, he drives and does a lot of sports and he hasn’t taken time away from the things that I do. Perhaps it is because I don’t think that something serious could happen to him but instead think that perhaps things will continue the way they’ve been until now, slowly and without becoming worse, that it will stay as it is. Today is the problem that I’ve got and whatever comes later on will come. I don’t think about the things that might happen, that he might not be able to care for himself. Rather I think that he is going to keep going. I don’t want to think about tomorrow, really. Perhaps those of us who are with him don’t understand what it is that he is going through and this annoys him a bit, and this is a problem for us, that we don’t understand that he has a disease. You can see this at mealtimes, which is when there is a little bit of tension. We have a young daughter and I think that she is the one who understands the problem least. I think that she finds the situation a little annoying and this in turn annoys my husband. Perhaps I am not as patient as I should be. My way of disconnecting is to fix myself up and to go out to work. I don’t get any help because we don’t need it − well, because he doesn't need it. For the moment I haven't asked for help. It's that I really don't need assistance. He can care for himself, and I only help him from time to time to get dressed or to tie his shoelaces, but very rarely. And this is only for very short moments, then his bad moment goes away and that's it, he's fine again. Sometimes I see that he has got a problem, for example, in putting on a jacket or something else and I look at him but ignore him. I want him to make an effort, and to be able to do it for himself. Carer 3 Hello, good afternoon. My name is Anna and I am 55 years old. My husband is 85 years old and has suffered from Parkinson’s disease for the last 10 years. In spite of the difference in age, my husband and I led a very active life: we went out a lot, we went on excursions, we went on trips, we went to the cinema a lot. When they diagnosed him as having the disease I couldn’t believe it. It seemed impossible to me that this could happen to us. At first I didn’t believe it; I thought that it was a joke. I had quite an important job in a company that I enjoyed a lot but I asked for leave of absence and I left it all to look after him. Now, if I had to do things over again, perhaps I wouldn’t do it because I don’t think that the care that I give him is better because I spend all the hours that I do with him rather than just a few. It is very hard to be with him all the time. On the other hand, if I had a separate professional life, I am sure that it would be much better when I arrived home. By this I don’t mean that I am not okay with him, but there are moments when I miss my professional life. Now I wouldn’t make the same decision. − Do you leave time for yourself? Do you keep up with your hobbies? Yes, but very little because I do practically everything with him. From time to time I try to get out with my friends or go shopping. 189

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What I do is I leave the same things prepared for the person who is going to be with him that we do when I am there, a crossword puzzle, a newspaper to read . . . but really there are very few times. I am almost always with him. I get help but I really think that the only person who can help him and that has to be at his side is me. So even though it is great that people help me, I am the one who has to be beside him constantly. You spend all the hours of the day with him, you are watching after him until it is time to go to bed. Your whole life. I get up at 7 a.m., I have a shower and I dress myself nicely. I try to look nice for him, not because I really feel like it sometimes, but I do it. I go to get the newspaper, the bread and I buy the things that I need. Then I return home and I help him to get up. In fact, he can do it himself if I watch him and help him with little things like doing up his buttons. He has breakfast and we begin reading the newspaper. We go out for awhile almost every day unless it’s raining a lot or the weather is bad. We go out even if it is just to take a walk around the block. Then we return, we turn on the television and I begin to prepare lunch and we eat. After lunch, he normally sleeps for a little while or we put the television on to see the news and we comment on them, although at this time of day he tends to fall asleep and, if the truth be told, so do I at times. After his nap, we listen to music, we read a book or we play dominoes. Sometimes we go to the cinema, but less and less often because it takes such a big effort because we have to go to a cinema where there aren’t any stairs. But both of us like to go so we try to keep it up. We also reminisce a lot about when we went on trips together. As for our relationship as a couple, not so much in the physical sense but in the sense of tenderness, of a caress, of a kiss, we still have that and we value it a lot. In fact if that part ended, he wouldn’t seem like my husband.

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Session 6: Social Competence for People with PD and for Carers Noëlle G. A. Spliethoff-Kamminga and Janny de Vreugd

Patient Education for People with Parkinson's Disease and their Carers: A Manual. Edited by Marcia Smith Pasqualini and Gwenda Simons. © 2006 John Wiley & Sons, Ltd.

Session 6: Social Competence

Because the content of this session differs significantly for carers and people with Parkinson’s disease (PD), the session content is described in separate sections for each group. In addition, each session can be carried out in two different ways, designated Option 1 and Option 2. Option 1 is a “cognitive” option, which is recommended for most groups. Option 2 is a “behavioural” option, which is recommended for groups with participants who have difficulty working on a cognitive level.

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Session 6: Social Competence Overview Participants are informed about different ways in which people can communicate with each other, and they discuss problems in communication that may occur with PD. The essential features of social competence are explained, and examples of helpful and unhelpful thoughts and their consequences are presented. Socially competent behaviour is explored and practised in an exercise. This practice is continued at home.

Materials ❏ ❏ ❏

Relevant handouts Script of conversation between a person with PD and a shop assistant (or DVD)1 Flip chart, markers, blank cards, pens for participants Part Discuss homework

1 Active Information Social competence

Option 1: Examples of ways to communicate; social competence; unhelpful and helpful thoughts Option 2: Examples of ways to communicate; social competence

Exercise Social competence Script of conversation illustrating PDrelated problems in communication

Option 1: The script is explored and possible solutions are discussed. Option 2: The script is explored, and socially competent behaviour is practised in a roleplay exercise

Homework

Option 1: Noting situations in which unhelpful thoughts contributed to a lack of socially competent behaviour Option 2: Telling someone that you have PD

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Discuss the experiences of: Option 1: Thinking of a positive event Option 2: Maintaining healthy activities

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Contents

Appetiser Social Support

Participants are asked to focus on the support they would like to receive from carers, family members, friends, neighbours and health care professionals

Up to 0:25’

Up to 0:55’

Up to 1:25’/ 1:20’

Up to 1:30’

A video clip of two actors acting out the script is available on DVD from Prof. Dr R. A. C. Roos, Department of Neurology K5Q, Leiden University Medical Center (LUMC). PO Box 9600, 2300 RC Leiden, The Netherlands, Telephone: 0031-(0)71-5262197, Fax: 0031-(0) 71-5248253 Email: [email protected]

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Part 1 Discuss Homework: Anxiety and Depression

0:25’

Goal: • To support the application of knowledge and skills from the previous session (Management of Anxiety and Depression) in everyday life.

Contents

Instructions

Discuss Homework

Ask the participants to briefly describe their experiences with the homework given in the previous session.

Option 1: Thinking about a positive event

Ask participants if they carried out the task of thinking about a positive event (present or past) by using the Reminder Card, and elicit comments about their experiences.

Option 2: Maintaining healthy activities

Ask participants if they engaged in a desired healthy activity and completed their worksheet, including noting positive feelings and congratulating themselves. Ask them to describe their experiences.

Note for group leader

Some participants may comment that the situations presented in the homework are not applicable to their own lives at the present time. In these cases the material can be presented as an aid for the future while emphasising that the situations and problems that are brought up may never occur.

If the participants report problems with the homework, you can suggest (and have other participants suggest) ways to handle these problems.

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Part 2 Active Information (Option 1): Social 0:25’ – 0:55’ Competence Goals: • To increase participants’ awareness that communication involves more than just language. • To help participants learn about socially competent behaviour and the importance of feeling free to express themselves. • To show participants how “helpful thoughts” can be used as a first step toward overcoming communication barriers. Contents Procedure

Instructions Discuss the appetiser (“make a note of situations in which you want to express your thoughts and feelings but do not have the confidence to do so”). Help participants learn about socially competent behaviour by presenting and discussing the following questions (steps): 1. What ways do you have to communicate with others? 2. How can people with PD make use of different ways of communicating to effectively send and receive messages? 3. Why is socially competent behaviour important? 4. How can you deal with barriers that keep you from expressing yourself?

Flip Chart

Write answers to these questions on a flip chart.

Step 1: In what ways can you communicate with others?

People communicate in many different ways. In addition to the words you use, you can send a message through:

Example

Demonstrate the variety of messages that can be sent by saying this same sentence in different ways: “I would like a cup of tea”. For example, you could say this angrily, pounding your fist; you could say it in a pleasant voice, with a smile; or you could say it in a sad voice, speaking softly, with a slumping posture.

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• • • • • • •

Characteristics of your voice (pitch, volume) Ways you articulate the words Making sounds such as “hmmm” Your posture and distance from the other person Gestures Eye contact Touch

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Step 2a: How can people with PD make use of different ways of communicating?

Session 6: Social Competence

Explain possible problems with communication that can occur in PD (such as reduced facial expression, reduced prosody, soft voice and slurring of words). Ask the group how they might make use of different ways of communicating, and how they deal with problems they encounter. You can suggest trying other ways of communicating to compensate for reduced expressions (facial, voice, gestures, etc.), such as giving clear verbal messages.

Step 2b: How can you effectively send and receive messages using different channels of verbal and nonverbal behaviour?

If you have difficulty communicating, here are some suggestions that might be helpful: • Give your full attention. Show that you are paying attention by looking the other person in the eyes, sitting up straight, and saying “hmmm”. • Paraphrase (repeat the message in your own words). For instance when somebody says: “I feel awful”, you could repeat: “So you don’t feel well”. • Ask directly what the person means when you’re not sure. For instance, when the doctor says: “Tremor increases in stressful situations”, you could say: “You mean the shaking gets worse when I am emotional?” • Give verbal rewards when your partner “opens up”, for instance by saying: “I’m glad you said that”. • Communicate your own feelings clearly, for instance, telling the other person “I love you”. (adapted from Schindler, Hahlweg & Revenstorf, 1984)

Step 3: Why is socially competent behaviour important?

It is important to feel free to express yourself in order to be able to: • Tell other people that you have PD. • Express positive and negative feelings. • Show initiative. • Defend your rights or to stop unwanted social interactions. • Stop insults and attacks.

Step 4: How can you deal with barriers blocking you from expressing yourself?

To be able to express yourself freely you may sometimes need to overcome unhelpful thoughts. This topic was addressed in Session 4 in relation to dealing with stress, and in Session 5 in relation to managing depression and anxiety. Now we’ll use the same strategy. We will look at unhelpful thoughts that could keep you from expressing yourself. Together we will try to change unhelpful thoughts into helpful thoughts. Hand out and discuss Examples of Unhelpful and Helpful Thoughts. Encourage participants to give additional examples. The appetiser can also be used as an additional example. Examples of Unhelpful and Helpful Thoughts

Handout 197

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Part 2 Active Information (Option 2): Social 0:25’ – 0:55’ Competence Goals: • To inform participants about the benefits of socially competent behaviour. • To increase participants’ awareness of the fact that communication involves more than just language. • To help participants learn about socially competent behaviour and the importance of feeling free to express themselves.

Contents Procedure

Instructions Discuss the Appetiser (“make a note of situations in which you want to express your thoughts and feelings but do not have the confidence to do so”). Help participants learn about socially competent behaviour by presenting and discussing the following questions (steps): 1. What ways do you have to communicate with others? 2. How can people with PD make use of different ways of communicating to effectively send and receive messages? 3. Why is socially competent behaviour important? 4. How can you deal with barriers that keep you from expressing yourself?

Flip Chart

Write answers to these questions on a flip chart.

Step 1: In what ways can you communicate with others?

People communicate in many different ways. In addition to the words you use, you can send a message through:

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Characteristics of your voice (pitch, volume) Ways you articulate the words Making sounds such as “hmmm” Your posture and distance from the other person Gestures Eye contact Touch

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Example

Session 6: Social Competence

Demonstrate the variety of messages that can be sent by saying this same sentence in different ways: “I would like a cup of tea.” For example, you could say this angrily, pounding your fist; you could say it in a pleasant voice, with a smile; or you could say it in a sad voice, speaking softly with a slumping posture.

Step 2a: How can people with PD make use of different ways of communicating?

Explain possible problems with communication that can occur in PD (such as reduced facial expression, soft voice and slurring of words). Ask the group how they might make use of different ways of communicating, and how they deal with problems they encounter.

Step 2b: How can you effectively send and receive messages using different channels of verbal and nonverbal behaviour?

If you have difficulty communicating, here are some suggestions that might be helpful:

You can suggest trying other ways of communicating to compensate for reduced expressions (facial, voice, gestures, etc.), such as giving clear verbal messages.

•

Give your full attention. Show that you are paying attention by looking the other person in the eyes, sitting up straight, and saying “hmmm”. • Paraphrase (repeat the message in your own words). For instance when somebody says: “I feel awful”, you could repeat: “So you don’t feel well”. • Ask directly what the person means when you’re not sure. For instance when the doctor says: “Tremor increases in stressful situations”, you could say: “You mean the shaking gets worse when I am emotional?” • Give verbal rewards when your partner “opens up”, for instance by saying: “I’m glad you said that”. • Communicate your own feelings clearly, for instance, telling the other person, “I love you”. (adapted from Schindler et al., 1984)

Step 3: Why is socially competent behaviour important?

It is important to feel free to express yourself in order to be able to: • Tell other people that you have PD. • Express positive and negative feelings. • Show initiative. • Defend your rights or to stop unwanted social interactions. • Stop insults and attacks. None.

Handout

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Part 3 Exercise (Option 1): Improving Social 0:55’ – 1:25’ Competence Goals: • To illustrate the information presented in the previous section with a script (or DVD) showing an example of PD-related problems in communication. • To help participants realise that they can choose to express themselves freely.

Contents Procedure

Instructions The exercise proceeds in three steps: 1. Introduction of the script 2. Presentation of the script 3. Exploration of the script

Note for group leader

If desired, you can ask two group members to read the parts of each of the people in the script (or have one group member read one part whilst you read the other part) rather than reading both parts yourself. If you prefer to show the conversation on the DVD (available separately − see footnote on p. 194), follow instructions described in Alternative B.

Step 1: Introduction

Alternative A: I am (or “group participants are”) going to read the script of a story about two people who are not communicating in a socially competent, functional way. Please try to identify what is going wrong in this situation. Alternative B: You are going to see a DVD showing two people who are not communicating in a socially competent, functional way. Please try to identify what is going wrong in this situation. The people in the scene are actually actors. Keep in mind that the acting is a bit “over the top” to make a point.

Step 2: Presentation of the script (or DVD)

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Alternative A: Read the script (or have participants read the script). Alternative B: Show the DVD, with sound.

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Step 3: Exploration of the conversation

Explore the conversation by asking participants to respond to the following questions.

Discussion

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What went wrong in the scene? (The person with PD is totally misunderstood.)

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Why did the shopkeeper get the wrong message? (Because of the inaccurately interpreted body language: shaking, speech, etc.)

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What kind of behaviour did the shopkeeper show in response? (Humiliating, uncooperative behaviour.)

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What thoughts might have helped the person with PD cope? (“This shopkeeper obviously has the wrong impression; he is young and inexperienced; I will inform him of his mistake.”)

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What could the person with PD have said in this situation? (“I can see that you think that I’m drunk, but the shaking is caused by a disease called Parkinson’s disease. Could you please be patient with me and assist me with packing the bottles into my bag?”)

•

What alternative ways of communicating could the person with PD have used? (To compensate for the speech problem, the person with PD could have instead written a note that describes his problem.)

(Note: if participants do not come up with the answers themselves, you can guide them towards appropriate responses.)

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Part 3 Exercise (Option 2): Improving Social 0:55’ – 1:25’ Competence Goals: • To illustrate the information presented in the previous section with a script (or DVD) showing an example of PD-related problems in communication. • To help participants realise that they can choose to express themselves freely if they so desire. • To prepare for real life situations through roleplaying.

Contents Procedure

Instructions The exercise proceeds in four steps: 1. Introduction of the script 2. Presentation of the script 3. Exploration of the script 4. Roleplay

Note for group leader

If desired, you can ask two group members to read the parts of each of the people in the script (or have one group member read one part whilst you read the other part), rather than reading both parts yourself. If you prefer to show the conversation on the DVD (available separately − see footnote on p. 194), follow instructions described in Alternative B.

Step 1: Introduction

Alternative A: I am (or “group participants are”) going to read the script of a story about two people who are not communicating in a socially competent, functional way. Please try to identify what is going wrong in this situation. Alternative B: You are going to see a DVD showing two people who are not communicating in a socially competent, functional way. Please try to identify what is going wrong in this situation. The people in the scene are actually actors. Keep in mind that the acting is a bit “over the top” to make a point.

Step 2: Presentation of the script (or DVD)

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Alternative A: Read the script (or have participants read the script). Alternative B: Show the DVD, with sound.

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Step 3: Exploration of the conversation

Explore the conversation by asking participants to respond to the following questions.

Discussion

•

(Note: if participants do not come up with the answers themselves, you can guide them towards appropriate responses.) What went wrong in the scene? (The person with PD is totally misunderstood.)

• Why did the shopkeeper get the wrong message? (Because of the inaccurately interpreted body language: shaking, speech, etc.) • What kind of behaviour did the shopkeeper show in response? (Humiliating, uncooperative behaviour.) • What could the person with PD have said in this situation? (“I can see that you think that I’m drunk but the shaking is caused by a disease called Parkinson’s disease. Could you please be patient with me and assist me with packing the bottles into my bag?”) • What alternative ways of communicating could the person with PD have used? (To compensate for the speech problem, the person with PD could have instead written a note that describes his problem.) Step 4: Role play

The goal of this role play is to give participants practice telling a stranger that they have PD. Ask one participant to play the role of a shopkeeper (or you can take that role), and ask another participant to be the shopper. Ask the rest of the group to try to be aware not only of the words the people are using but also the other ways the messages are being communicated, such as through facial expressions, gestures and tone of voice. As time allows, participants can take turns playing the different roles while observers give feedback about what worked and what did not.

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Part 4 Homework (Option 1): Social Competence

1:25’ – 1:30’

Goal: •

To increase socially competent behaviour in everyday life.

Contents Homework: Self-Report

Instructions Instruct participants about how to use the Self-Report Sheet: Unhelpful and Helpful Thoughts in Social Situations. Participants each choose one situation in which they were not able to express themselves (if they wish they can use the situation they described in the Appetiser). Participants then answer the following questions on the Self-Report Sheet: • What was the situation in which you were not able to express yourself? • What was the unhelpful thought? • What was the result? • What helpful thought could you have used? Remind participants that they can use the handout entitled Examples of Unhelpful and Helpful Thoughts to help complete the homework.

Handouts

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Self-Report Sheet: Unhelpful and Helpful Thoughts in Social Situations Examples of Unhelpful and Helpful Thoughts

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Part 4 Homework (Option 2): Social Competence

1:20’ – 1:30’

Goal: •

To increase socially competent behaviour in everyday life.

Contents Homework: Contemplation/ Telling another person about PD

Instructions For the next session, think about how you would tell someone that you have PD and about how PD affects you. If possible, write this information on the blank card. In addition, if an appropriate situation arises, actually tell someone about your PD. A blank card.

Handout

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Part 5 Appetiser: Social Support Goal: •

To become aware of the types of social support that are available.

Contents What kinds of social support would you like to receive?

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Instructions Please think about the kinds of social support you would like to receive, such as support from carers, family members, friends, neighbours or health care professionals.

Session 6: Social Competence

Session 6: Social Competence Materials • • • •

Examples of Unhelpful and Helpful Thoughts Script of conversation between a person with PD and a shop assistant (or DVD; see footnote on p. 194) Self-Report Sheet: Unhelpful and Helpful Thoughts in Social Situations Blank cards

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Examples of Unhelpful and Helpful Thoughts Systematic practice can improve your ability to change unhelpful thoughts into helpful thoughts. You can use the following examples for this practice. Situation: You are having a telephone conversation but the other person is talking too fast. You don’t understand what the person is saying. Unhelpful thought: Oh no, he’s talking too fast but if I ask him to slow down he’ll think I am stupid or something! Result: You don’t understand what he’s saying, and you feel confused. Helpful thought: He’s talking too fast, so I will ask him to slow down a little. Otherwise, I won’t understand what he’s trying to tell me. Result: You understand what he says and are able to participate in the conversation. Situation: You are standing in a bus. You are exhausted. There are no seats left. Unhelpful thought: What a cruel world! Nobody is offering me a seat. Result: You may have to stand up the whole trip. Helpful thought: I’ll tell that friendly looking person about my condition and ask her if she wouldn’t mind giving me her seat. Result: You are able to sit down (and perhaps have a nice conversation with the woman). Situation: You and your partner are in a hurry. To save time, your partner is helping you put on your coat. You don’t want anyone helping you to get dressed. Unhelpful thought: He is treating me like a child. I hate this! Result: You are upset. Helpful thought: He is trying to be helpful and is probably not aware of the fact that I’d rather do this myself. I will explain it to him. Result: You put the coat on by yourself and your partner allows you to do so in the future. Situation: You are paying the cashier. It is not your best day. There is a long queue behind you. The cashier is watching you closely and appears to be impatient. Unhelpful thought: She must think I’m a freak. I’ll try to do this as fast as possible and get the hell out of here. Result: The stress makes your tremor even worse. Helpful thought: She probably does not understand. I will explain my condition while I am paying her. Result: You can take your time, and the next time at least this cashier will understand.

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Social Competence Script (for People with PD) Setting: Liquor store Introduction: Mr Ginsberg is a person with Parkinson’s disease. The day after tomorrow he will celebrate his birthday. He is expecting friends and therefore he wants to buy some liquor. Because he feels rather well today he decided to do the shopping himself. But then look what happens . . .

Shopkeeper

Mr Ginsberg

(dusting the desk)

(entering shop)

S: Good morning! G: Morning. S: Can I help you? G: Eh … S: Well? (takes note out of shopping bag) S: Yes? G: Beer. S: Which kind? G: Lager please. S: How many? G: Twelve. S: Bottles? G: Yes, please. S: Anything else? G: Wine. S: White? G: No, red wine. S: This one’s a special price. Chilean. G: Beg your pardon? S: Chilean. G: Chilean? S: From Chile. G: I see. S: Special price. G: All right.

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S: How many? G:….. S: Pardon? G: Four. S: Four? G: No, two. S: Two bottles of Chilean wine. Anything else? G:……. S: Please, speak more clearly. I really can’t understand. (shaking) S: Well? G: Vodka. Two. S: Two bottles of vodka? G: Yes. S: Well, well... Anything else? G: No (telephone rings) S: Just a moment. Carver’s Liquor store, for all your strong drinks … Can I help you? G: (trying to put the bottles into the shopping bag) S: Yes of course, madam, but we deliver in the evening. And under £200 we charge £10 for delivery. S: All right. One moment. I’ll just get my diary. When would you like us to deliver? S: It’s late night shopping then. Can we deliver the day before? S: Fine. About eight? S: And what would you like to order? S: I’ll just add up . . . £200 even.

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S: All right madam. We’ll be at your door at eight the day after tomorrow. S: And thank you for ordering. Have a nice day. Bye bye . . . Well, well . . . S: (Tapping his fingers on the desk)

G: (trying to get some assistance)

S: Beg your pardon? S: Do you want me to put it in a bag? G: Yes, please. S: In this bag? G: Yes, please. S: All right then. G: How much is it? S: £24 please G: (Fumbling with his wallet, shaking badly) G: Sorry. S: Well, you can do with a drink. G: (Uttering noises) S: Beg your pardon? G: (Leaving shop without his liquor) S: Hey, what’s this then? Hey! S: Yes, well, perhaps it’s for the better. To leave it here.

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Self-Report Sheet Unhelpful and Helpful Thoughts in Social Situations Choose one situation in which you usually don’t express yourself. Write it on this sheet (Question 1). Your task, during this coming week, is to try to improve your ability to communicate your feelings in this specific situation, by examining how you can change unhelpful thoughts (Questions 2 & 3) into helpful thoughts (Question 4). 1.

What was the situation in which you were not able to express yourself?

....................................................................................................................................... ....................................................................................................................................... 2.

What was the unhelpful thought?

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What was the result?

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What helpful thought could you use instead?

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Session 6: Social Competence

Session 6: Social Competence Overview Participants are informed about different ways in which people can communicate with each other and discuss problems in communication that may occur with PD. The essential features of social competence are explained and examples of helpful and unhelpful thoughts and their consequences are presented. Socially competent behaviour is explored and practised in an exercise. This practice is continued at home.

Materials ❏ ❏ ❏

Relevant handouts Script of conversation between a man with PD and his spouse (or DVD)2 Flip chart, markers, blank cards, pens for participants Part Discuss homework

Discuss the experience of: Option 1: Engaging in a relaxing activity Option 2: Dealing with distressing situations

Up to 0:25’

Active information Social competence

Option 1: Examples of ways to communicate; social competence; unhelpful and helpful thoughts Option 2: Examples of ways to communicate; social competence

Up to 0:55’

Exercise Social competence

Option 1: The script is explored and possible solutions are discussed. Option 2: The script is explored and socially competent behaviour is practised in a role play exercise

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Contents

Appetiser Social Support

Option 1: Noting situations in which unhelpful thoughts contributed to a lack of socially competent behaviour Option 2: Telling someone about your partner’s PD and how it affects you Participants are asked to focus on the support they would like to receive from family members, friends, neighbours and healthcare professionals

Up to 1:25’/ 1:20’

Up to 1:30’

2 A video clip of two actors acting out the script is available on DVD from Prof. Dr R. A. C. Roos, Department of Neurology K5Q, Leiden University Medical Center (LUMC). PO Box 9600, 2300 RC Leiden, The Netherlands, Telephone: 0031-(0)71-5262197, Fax: 0031-(0) 71-5248253 Email: [email protected]

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Part 1 Discuss Homework: Carer’s Challenge

0:25’

Goal: • To support the application of knowledge and skills from the previous session (Carer’s Challenge) in everyday life.

Contents

Instructions

Discuss homework

Ask the participants to describe briefly their experiences with the homework given in the previous session.

Task 1: Engaging in a relaxing activity

Ask participants if they carried out the task of engaging in a relaxing activity, and elicit comments about their experiences.

Task 2: Dealing with distressing situations

Ask participants whether they filled in the chart Dealing with Distressing Situations and ask them to comment on their experiences.

Note for group leader

Some participants may comment that the situations presented in the homework are not applicable to their own lives at the present time. In these cases the material can be presented as an aid for the future while emphasising that the situations and problems that are brought up may never occur.

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If the participants report problems with the homework, you can suggest (and have other participants suggest) ways to handle these problems.

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Session 6: Social Competence

Part 2 Active Information (Option 1): Social 0:25’ – 0:55’ Competence Goals: • To increase participants’ awareness of the fact that communication involves more than just language. • To help participants learn about socially competent behaviour and the importance of feeling free to express themselves. • To show participants how “helpful thoughts” can be used as a first step toward overcoming communication barriers.

Contents Procedure

Instructions Discuss the Appetiser in the previous session (“make a note of situations in which you want to express your thoughts and feelings but do not have the confidence to do so”). Help participants learn about socially competent behaviour by presenting and discussing the following questions (steps): 1. What ways do you have to communicate with others? 2. How can people with PD make use of different ways of communicating to effectively send and receive messages? 3. Why is socially competent behaviour important? 4. How can you deal with barriers that keep you from expressing yourself? Write answers to these questions on a flip chart.

Flip Chart Step 1: In what ways can you communicate with others?

People communicate in many different ways. In addition to the words you use, you can send a message through: • Characteristics of your voice (pitch, volume) • Ways you articulate the words • Making sounds such as “hmmm” • Your posture and distance from the other person • Gestures • Eye contact • Touch

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Example

Demonstrate the variety of messages that can be sent by saying this same sentence in different ways: “I would like a cup of tea”. For example, you could say this angrily, pounding your fist; you could say it in a pleasant voice, with a smile; or you could say it in a sad voice, speaking softly with a slumping posture.

Step 2a: What do carers need to be aware of when communicating with others?

•

Step 2b: How can carers of people with PD make use of different ways of communicating?

Ask participants if they have noticed problems with communication. You can also describe problems that might occur and ask participants which, if any, of these problems they have encountered.

People are not mind readers; they need you to tell them what you are thinking. • Outsiders do not have a clear understanding of your situation, unless you tell them. • Communication patterns between you and your partner might change slowly, as the disease progresses, without you even noticing. • The person with PD has a right to know how you feel. Covering up your true feelings can increase the sense of isolation for both of you.

If participants have partners with reduced expression (for example, reduced facial expressions, lack of prosody in the voice, reduced gestures) you can discuss the need to ask their partner to explain their feelings verbally: Some people with PD are no longer able to express themselves in a nonverbal way. This does not mean that emotions (for instance, affection or humour) are not there. If you are not sure, you can ask your partner to express these emotions verbally.

Step 3: How can you effectively send and receive messages using different channels of verbal and nonverbal behaviour?

If you have difficulty communicating with a person with PD, here are some suggestions that might be helpful: • • •

• •

Give your full attention. Show that you are paying attention by looking the other person in the eyes, sitting up straight, and saying “hmmm”. Paraphrase (repeat the message in your own words). For instance when the person says: ‘I feel awful’, you could repeat: “So you don’t feel well”. Ask directly what the person means when you’re not sure. For instance when he or she says: “You can just go on without me”, you could say, “Do you really not want to go, or do you just need more time to get ready?” Give verbal rewards when your partner “opens up”, for instance by saying: “I’m glad you said that”. Communicate your own feelings clearly, for instance, telling the other person, “I love you”.

(adapted from Schindler et al., 1984)

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Step 4: Why is socially competent behaviour important?

It is important to feel free to express yourself in order to be able to:

Step 5: How can you deal with barriers blocking you from expressing yourself?

To be able to express yourself freely, you may sometimes need to overcome unhelpful thoughts. This topic was addressed in Session 4 in relation to dealing with stress, and in Session 5 in relation to dealing with the challenges of caring for a person with PD. Now we’ll use the same strategy.

• • • • •

Tell other people that your partner has PD and how this affects you. Express positive and negative feelings. Show initiative. Defend your rights or to stop unwanted social interactions. Stop insults and attacks.

We will look at unhelpful thoughts that could keep you from expressing yourself. Together we will try to change unhelpful thoughts into helpful thoughts. Hand out and discuss Examples of Unhelpful and Helpful Thoughts. Encourage participants to give additional examples. The Appetiser can also be used as an additional example. Examples of Unhelpful and Helpful Thoughts

Handout

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Part 2 Active Information (Option 2): Social Competence

0:25’ – 0:55’

Goals: • To inform participants about the benefits of socially competent behaviour. • To increase participants’ awareness of the fact that communication involves more than just language. • To help participants learn about socially competent behaviour and the importance of feeling free to express themselves.

Contents Procedure

Instructions Discuss the appetiser (“make a note of situations in which you want to express your thoughts and feelings but do not have the confidence to do so”). Help participants learn about socially competent behaviour by presenting and discussing the following questions (steps): 1. What ways do you have to communicate with others? 2. How can carers make use of different ways of communicating to effectively send and receive messages? 3. Why is socially competent behaviour important? 4. How can you deal with barriers that keep you from expressing yourself? Write answers to these questions on a flip chart.

Flip Chart Step 1: In what ways can you communicate with others?

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People communicate in many different ways. In addition to the words you use, you can send a message through: • • • • • • •

Characteristics of your voice (pitch, volume) Ways you articulate the words Making sounds such as “hmmm” Your posture and distance from the other person Gestures Eye contact Touch

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Example

Session 6: Social Competence

Demonstrate the variety of messages that can be sent by saying this same sentence in different ways: “I would like a cup of tea.” For example, you could say this angrily, pounding your fist; you could say it in a pleasant voice, with a smile; or you could say it in a sad voice, speaking softly with a slumping posture.

Step 2a: What do carers of people with PD have to be aware of when communicating with others?

• People are not mind readers; they need you to tell them what you are thinking. • Outsiders do not have a clear understanding of your situation unless you tell them. • Communication patterns between you and your partner might change slowly, as the disease progresses, without you even noticing. • The person with PD has a right to know how you feel. Covering up your true feelings can increase the sense of isolation for both of you.

Step 2b: How can carers of people with PD encourage their partners to make use of different ways of communicating?

Ask participants if they have noticed problems with communication. You can also describe problems that might occur and ask participants which, if any, of these problems they have encountered.

Step 2c: How can you effectively send and receive messages using different channels of verbal and nonverbal behaviour?

If you have difficulty communicating with a person with PD, here are some suggestions that might be helpful:

If participants have partners with reduced expression (for example, reduced facial expressions, lack of prosody in the voice, reduced gestures) you can discuss the need to ask their partner to explain their feelings verbally: Some people with PD are no longer able to express themselves in a nonverbal way. This does not mean that emotions (for instance, affection or humour) are not there. If you are not sure, you can ask your partner to express these emotions verbally.

• Give your full attention. Show that you are paying attention by looking the other person in the eyes, sitting up straight, and saying “hmmm”. • Paraphrase (repeat the message in your own words). For instance when the person says: “I feel awful”, you could repeat: “So you don’t feel well”. • Ask directly what the person means when you’re not sure. For instance when he or she says: “You can just go on without me”, you could say, “Do you really not want to go, or do you just need more time to get ready?” • Give verbal rewards when your partner “opens up”, for instance by saying: “I’m glad you said that”. • Communicate your own feelings clearly, for instance, telling the other person, ‘I love you’. (adapted from Schindler et al., 1984)

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Step 3: Why is socially competent behaviour important?

Patient Education for People with PD and their Carers

It is important to feel free to express yourself in order to be able: • • • • •

To tell other people that your partner has PD and how this affects you. To express positive and negative feelings. To show initiative. To defend your rights or to stop unwanted social interactions. To stop insults and attacks.

None. Handout

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Part 3 Exercise (Option 1): Improving Social 0:55’ – 1:25’ Competence Goals: • To illustrate the information presented in the previous section with a script (or DVD) showing an example of PD-related problems in communication. • To help participants realise that they can choose to express themselves freely.

Contents Procedure

Instructions The exercise proceeds in three steps: 1. Introduction of the script 2. Presentation of the script 3. Exploration of the script

Note for group leader

If desired, you can ask two group members to read the parts of each of the people in the script (or have one group member read one part whilst you read the other part), rather than reading both parts yourself. If you prefer to show the conversation on the DVD (available separately – see footnote 1 on p. 194), follow instructions described in Alternative B.

Step 1: Introduction

Alternative A: I am (or “group participants are”) going to read the script of a story about two people who are not communicating in a socially competent, functional way. Please try to identify what is going wrong in this situation. Alternative B: You are going to see a DVD showing two people who are not communicating in a socially competent, functional way. Please try to identify what is going wrong in this situation. The people in the scene are actually actors. Keep in mind that the acting is a bit “over the top” to make a point.

Step 2: Presentation of the script (or DVD)

Alternative A: Read the script (or have participants read the script). Alternative B: Show the DVD, with sound.

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Step 3: Exploration of the conversation

Explore the conversation by asking participants to respond to the following questions.

Discussion

• What went wrong in the scene? (The partner is kept from doing what she really wants to do.)

(Note: if participants do not come up with the answers themselves, you can guide them towards appropriate responses.)

• Why did both the partner’s friend and the person with PD get the wrong message? (The partner is not expressing her real feelings.) • What was everyone’s response? (Partner and partner’s friend: disappointment; Person with PD: confirmation of the partner’s role.) • What is a better way to communicate? (Be honest and give a clear message.) • What might have been a helpful thought? (“I really need some time off now in order to keep functioning. I have to be honest about that so I should tell him.”) • In what way could the partner have expressed herself in this situation? (She could have told her friend that she needed to discuss the issue with her husband and that she’d ring her back. She could have explained to her husband that she needed some time off in order to “reload”.) After discussing these questions, remind the participants about the importance of sharing their true feelings. The person with PD has a right to know how you feel. Covering up your feelings can increase the sense of isolation for both of you.

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Session 6: Social Competence

Part 3 Exercise (Option 2): Improving Social 0:55’ – 1:25’ Competence Goals: • To illustrate the information presented in the previous section with a script (or DVD) showing an example of PD-related problems in communication. • To help participants realise that they can choose to express themselves freely. • To prepare for real life situations through roleplaying.

Contents Procedure

Instructions The exercise proceeds in four steps: 1. Introduction of the script 2. Presentation of the script 3. Exploration of the script 4. Roleplay

Note for group leader

If desired, you can ask two group members to read the parts of each of the people in the script (or have one group member read one part whilst you read the other part), rather than reading both parts yourself. If you prefer to show the conversation on the DVD (available separately – see footnote on p. 194), follow instructions described in Alternative B.

Step 1: Introduction

Alternative A: I am (or “group participants are”) going to read the script of a story about two people who are not communicating in a socially competent, functional way. Please try to identify what is going wrong in this situation. Alternative B: You are going to see a DVD showing two people who are not communicating in a socially competent, functional way. Please try to identify what is going wrong in this situation. The people in the scene are actually actors. Keep in mind that the acting is a bit “over the top” to make a point.

Step 2: Presentation of the script (or DVD)

Alternative A: Read the script (or have participants read the script). Alternative B: Show the DVD, with sound.

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Step 3: Exploration of the conversation

Explore the conversation by asking participants to respond to the following questions.

Discussion

• What went wrong in the scene? (The partner is kept from doing what she really wants to do.)

(Note: if participants do not come up with the answers themselves, you can guide them towards appropriate responses.)

• Why did both the partner’s friend and the person with PD get the wrong message? (The partner is not expressing her real feelings.) • What was everyone’s response? (Partner and partner’s friend: disappointment; Person with PD: confirmation of the partner’s role.) • What is a better way to communicate? (Be honest and give a clear message.) • In what way could the partner have expressed herself in this situation? (She could have told her friend that she needed to discuss the issue with her husband and that she’d ring her back. She could have explained to her husband that she needed some time off in order to “reload”). After discussing these questions, remind the participants about the importance of sharing their true feelings. The person with PD has a right to know how you feel. Covering up your feelings can increase the sense of isolation for both of you. Step 4: Role play

The goal of this role play is to give participants practice telling another person that their partner has PD and how it affects them. Ask one participant to play the role of a neighbour (or you can take that role), and ask another participant to be a carer who speaks to the neighbour. Ask the rest of the group to try to be aware not only of the words the people are using but also the other ways the messages are being communicated, such as through facial expressions, gestures and tone of voice. As time allows, participants can take turns playing the different roles while observers give feedback about what worked and what did not.

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Part 4 Homework (Option 1): Social Competence

1:25’ – 1:30’

Goal: •

To increase socially competent behaviour in everyday life.

Contents Homework: Self-report

Instructions Instruct participants about how to use the Self-Report Sheet: Unhelpful and Helpful Thoughts in Social Situations Participants each choose one situation in which they were not able to express themselves (if they wish, they can use the situation they described in the Appetiser). Participants then answer the following questions on the Self-Report Sheet: • What was the situation in which you were not able to express yourself? • What was the unhelpful thought? • What was the result? • What helpful thought could you have used? Remind participants that they can use the handout entitled Examples of Unhelpful and Helpful Thoughts to help complete the homework.

Handouts

Self-Report Sheet: Unhelpful and Helpful Thoughts in Social Situations Examples of Unhelpful and Helpful Thoughts

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Part 4 Homework (Option 2): Social Competence

1:20’ – 1:30’

Goal: •

To increase socially competent behaviour in everyday life.

Contents

Instructions

Homework: Contemplation/ telling another person about your partner’s PD

For the next session, think about how you would tell someone that your partner has PD and about how his/her PD affects you. If possible, write this information on the blank card. In addition, if an appropriate situation arises, actually tell someone (a neighbour for example) about your partner’s PD. A blank card.

Handout

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Part 5 Appetiser: Social Support Goal: •

To become aware of the types of social support that are available.

Contents What kinds of social support would you like to receive?

Instructions Please think about the kinds of social support you would like to receive, such as support from family members, friends, neighbours or healthcare professionals.

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Session 6: Social Competence Materials • Examples of Unhelpful and Helpful Thoughts • Script of conversation between a man with PD and his spouse (or DVD;see footnote on p.194) • Self-Report Sheet: Unhelpful and Helpful Thoughts in Social Situations • Blank cards

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Examples of Unhelpful and Helpful Thoughts Systematic practice can improve your ability to change unhelpful thoughts into helpful thoughts. You can use the following examples for this practice. Situation: A friend asks you to go with her to the cinema. You really want to go but your partner asks you to stay at home. Unhelpful thought: My partner is sick so he needs me all the time. I will hurt him by telling him that I need a little time for myself. Result: You stay at home and feel miserable. Helpful thought: I need some time for myself occasionally in order to function. I will gently tell my partner so; he/she will be able to handle it. Result: You’ll have your “night off” and are better able to be there for your partner when you get back. Situation: Your adult children complain that you don’t visit them as much as you used to do. They don’t understand the situation. They only see your partner (the person with PD) at his/her best. Unhelpful thought: I won’t bother them with my problems because that would be betraying my partner. Result: They still don’t understand that the situation has worsened and you feel more isolated. Helpful thought: They won’t understand the situation unless I tell them, so I will tell them about the situation at home. Result: You no longer have to carry the load all by yourself. Situation: A good friend asks you how your partner is doing. You really feel the need to talk about your own problems. Unhelpful thought: I wish he had asked me how I am doing but of course I’m not the sick person, so I’ll tell him all about the troubles of my partner. Result: You are not able to express your feelings. Helpful thought: He cannot read my mind, so after I tell him about my partner, I will ask if he would mind my telling him about my own problems. Result: You are able to express your feelings.

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Social Competence Script (for carers) Setting: Lounge Introduction: Mr Ginsberg is man with PD who has not been feeling well for the last couple of weeks. Because of her husband’s illness, Mrs Ginsberg has not been out of the house for weeks. She definitely could do with some distraction. The phone rings . . . Mrs Ginsberg

Mr Ginsberg

(Reading paper) (Phone ringing)

(Reading book)

Mrs G: Hello? Mrs G: Hello Jane! Long time no see. Mrs G: Fine. How are you? Mrs G: And the children? Mr G: Who’s that? Mrs G: Well, on and off, you know. Mrs G: On and off. Mr G: Who’s that? Mrs G (to Mr G): Jane . . . Mrs G: Yes. It’s not getting any better. Mr G: Who? Mrs G: Jane Mr G: Ah. Mrs G: Right beside me. Mrs G: No, that’s all over now. Mrs G: No. We’re staying in. Nice and cosy. Mr G: What does she want? Mrs G: Yes. Of course I still do. Mrs G: Well no. Now that you mention it. Mrs G: Yes, that’s what they keep telling me. But they don’t see everything. 230

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Mr G: What does she want, then? Mrs G (to Mr G): Nothing. Just a chat. Mr G: Ah Mrs G: Yes. You’re right. Mrs G: Well, I don’t know . . . Mrs G: I wouldn’t mind . . . Mrs G: And have a drink afterwards . . . Mr G: What are you up to? Mrs G: Hold on . . . Mrs G (to Mr G): This is Jane. She’s going shopping. In the city. She is asking me to join her. Mr G: In the city? Mrs G: Hold on, Jane . . . Mrs G (to Mr G): Yes. Mr G: To do what? Mrs G (to Mr G): Well, to do some shopping, have a drink somewhere . . . Mr G: Ah. Mrs G: But, I don’t know . . . Mrs G: Maybe, it’s not the right time. I’ll ask. Just a moment . . . Mrs G (to Mr G): Do you think I should go? Mr G: I don’t know. Mrs G (to Mr G): Can I? Mr G: I don’t know. Mrs G (to Mr G): Maybe some other time? Mr G: Perhaps. Mrs G (to Mr G): You’d rather I’d stay? Mr G: Yes. Mrs G (to Mr G): Not feeling too well today, are you? Mr G: No. Mrs G (to Mr G): All right. Some other time then. Mr G: Yes. Mrs G: He’s not feeling too well today.

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Mrs G: No, then I’ll stay with him. Mrs G: Yes, I’m sorry too. Mrs G: Yes, all right. Mrs G: Yes. I’ll call. Mrs G: Yes. Promise. Mrs G: Bye. Thanks for calling! Mrs G: Bye. Mrs G (to Mr G): So, you’re not feeling too well today. Mr G: No . . . I think I’ll take a nap. Mrs G (to Mr G): All right . . . I’ll just read something.

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Self-Report Sheet Unhelpful and Helpful Thoughts in Social Situations Choose one situation in which you usually don’t express yourself. Write it on this sheet (Question 1). Your task during this coming week is to try to improve your ability to communicate your feelings in this specific situation, by examining how you can change unhelpful thoughts (Questions 2 & 3) into helpful thoughts (Question 4). 1.

What was the situation in which you were not able to express yourself?

....................................................................................................................................... ....................................................................................................................................... 2.

What was the unhelpful thought?

....................................................................................................................................... ....................................................................................................................................... 3.

What was the result?

....................................................................................................................................... ....................................................................................................................................... 4.

What helpful thought could you have had instead?

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Session 7: Social Support Pio Enrico Ricci Bitti and Lorena Candini

Patient Education for People with Parkinson's Disease and their Carers: A Manual. Edited by Marcia Smith Pasqualini and Gwenda Simons. Copyright © 2006 John Wiley & Sons, Ltd.

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Session 7: Social Support

Session 7: Social Support Overview A short brainstorming session is used to introduce a discussion about social support. Information is provided, followed by a roleplay (or discussion) in which a participant asks for or gives social support. As homework, participants are asked to collect information about sources of support and to practise (or just think about) eliciting social support.

Materials ❏ ❏ ❏

Relevant handouts Slides Flip chart, markers

Part Discuss homework Social competence

Discuss experiences with Option 1: Practising socially competent behaviours Option 2: Telling someone that you have/your partner has PD

Up to 0:30’

Active Information Brainstorming about social support

Definition: What is social support? Importance of social support for people with PD and their carers How to obtain social support from formal and informal networks

Up to 1:00’

Exercise and guided discussion Asking for and giving support

Role play/Discussion

Homework

Finding sources of support; asking for support

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Appetiser 5

Contents

Up to 1:20’

Reflecting about the EduPark programme

Up to 1:30’

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Part 1 Discuss Homework: Social Competence

0:30’

Goal: • To support the application of knowledge and skills from the previous session (Social Competence) in daily life. Contents

Instructions

Discuss homework

Ask participants to describe briefly their experiences with the homework from the previous session (practising social competence skills). Suggest ways to deal with any problems that arose.

Option 1: Self-Report Sheet

Participants were each asked to choose one situation in which they were not able to express themselves, and to write the answers to the following questions on the self-report sheet: • What was the situation in which you were not able to express yourself? • What was the unhelpful thought? • What was the result? • What helpful thought could you have had instead? Ask participants whether they had any problems using the Self-Report Sheet.

Option 2:

Participants were asked to think about how they would tell someone that they have PD, and about how PD affects them. If possible, they were to write this information on a card. In addition, if an appropriate situation arose, they were to actually tell someone about their PD. • Did you write a card? If not, do you want us to help you with that? • Did you tell anyone about your PD and if yes, how did he/she react? Participants were asked to think about how they would tell someone that their partner has PD and about how his/her PD affects them. If possible, they were to write this information on a card. In addition, if an appropriate situation arose, they were to actually tell someone about their partner’s PD. • Did you write a card? If not, do you want us to help you with that? • Did you tell anyone about your partner’s PD? If yes, how did he/she react?

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Part 2 Active Information: Brainstorming about Social Support

0:30’ – 1:00’

Goal: •

To understand what Social Support is, why it is important for people with PD and carers and how it can be found through formal and informal support networks.

Contents

Instructions

Note for group leader

If desired, you can use Slides A–F (see Materials) to support the presentation of Active Information.

Definition: What is Social Support?

Social Support is a source of help from your relationship network that may directly affect your psychological and physical wellbeing. There are many different sources of social support, such as: Formal Social Network – General Practitioners, Specialists, NHS, Care at home services (such as Meals on Wheels, home help), social workers, psychologists, respite care. Informal Social Network – Family members, friends, colleagues, neighbours, PD self-help groups/associations.

Importance of social support

Emotional support can enhance your feelings of self-esteem and help you maintain your unique identity. Practical support, including advice and information about healthprotective behaviours, and suggestions about additional resources, can help reduce your emotional and physical stress, while improving your overall network of support. Financial support provides economic benefits. People with PD: Social support can help you cope with the feelings of loneliness, depression, anxiety, low self-esteem and isolation that sometimes accompany the illness. Carers: Social support can help you cope with psychological and physical stress, and help you to maintain your own “space”, separate from the problems related to PD.

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How to get support from the formal network

To get support from the formal network:

How to get support from the informal network

To get support from the informal network:

Brainstorming

To start a discussion/brainstorming session, refer to the Appetiser given in the previous session (focusing on the support that participants would like to receive from their carers (for PD patients), family members, neighbours, associations, general practitioner etc.) and ask participants the following questions:

• Know what your rights are. • Know what organisations/systems are in place to provide information and support. • Play an active role in the social network (in other words, use the support and help offered). • Take part in social events, such as those organised by the Parkinson’s Disease Society. • Express your emotions. • Ask for help, whilst maintaining autonomy.

• What do you mean by social support? Can you give some examples? • To whom do you go to when you are in need? • Why is it important to ask for and to give help? Flip Chart

List examples of participants’ personal experiences on a flip chart. To further illustrate the concepts, draw a diagram of the social network of one or more participants on a flip chart, as illustrated below Casual and close Relationships (e.g. neighbours, friends, members of PD Society) Person with PD/Carer The most intimate relationships (e.g. wife/husband, son, daughter) Formal Relationships (e.g, manager, neurologist)

Figure 7.1 Example diagram of a social network.

At the end of the discussion, summarise the information generated, referring to the contents of the slides (see Materials for content of slides A, B, C, D, E and F). Whilst summarising the information, it0 may be helpful to refer to previous sessions, such as information from session 1 about formal social support. Slides A, B, C, D, E, F Handouts

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Part 3 Exercise: Role play/Discussion

1:00’ – 1:20’

Goal: • To develop and expand participants’ ability to identify and seek appropriate social support. Contents

Instructions Choose one of the following two options, based on which you believe is more appropriate for the group: A role play (Option A), or a discussion (Option B).

Option A: Role play

Role play: The group leader first asks the group to help come up with several typical situations that involve asking for help/giving support and involve both a person with PD and a carer (for example, for people with PD: asking for help in tying shoes, going to a doctor’s appointment; for carers: helping a person with PD to go to a meeting or to ask for information). You can also refer to the experiences participants mentioned during the Active Information component. The group then chooses one of these experiences to be acted by two volunteers, one who will play the part of a person with PD and one who will play the part of carer (even though in reality both are actually carers or both have PD). Stress the importance of acting the roles as naturally as possible. After the role play, ask the group to discuss the experience. To start the discussion, you might encourage both actors to share their experiences, asking questions such as: • How did you feel during the experience? • How did you feel when you played the role of someone with PD/a carer? • Did you experience any difficulties when you played the role of someone with PD/a carer? • What would you have wanted your partner to do or not do, say or not say? Encourage the rest of the participants to offer their impressions, asking questions such as: • What were you impressed by during the experience? • What would/wouldn’t you have done if you had played the role of someone with PD/a carer? • What is most important when asking for/giving support?

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Option B: Discussion

Discussion: Lead a discussion about how to ask for and receive social support from your partner. To start the discussion, encourage participants to share their personal experiences of times when they asked for their partner’s support. You can refer to the experiences participants reported during the Active Information component, and ask questions such as: • How did you feel about asking for/giving support? • What were your impressions while asking for/giving support? • Did you experience any difficulties when asking for/giving support? • What would/wouldn’t you have wanted your partner to say or do? • What is important when asking for/giving support?

After Option A/B

After the role play or discussion (either option), summarise the information, referring to the contents of slides G or H if possible (see Materials for content). Hand out Guidelines for Seeking Social Support (PD or carer version).

Seeking social support

How to receive support: • Ask for help only in case of real need, while maintaining your independence as much as possible • Learn to share your own experiences with others • Take an active part in self-help groups, sharing your experiences with the group • Focus on your own abilities • Learn whom to refer to for specific needs

Slide G optional Seeking/giving social support

Slide H optional

How to receive support: • Express and share your own emotions and feelings in intimate relationships • Find time for yourself (for example, going out without the person you care for) • Take care of your health • Take an active part in self-help groups • Learn whom to refer to for specific needs How to give support to the person you care for: • Let the person you care for freely express his/her emotions and needs • Give support to the person you care for in activities of daily living without taking over Guidelines for Seeking Social Support (people with PD/carers)

Handout

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Session 7: Social Support

Part 4 Homework: The Formal and Informal 1:20’ – 1:30’ Social Network Goal: • To increase participants’ awareness about social support while fostering their participation in their social network.

Contents Task A

Instructions Collecting information about the formal and informal social network: Ask participants to collect information about the formal and informal social network in their area and to describe it on the Social Support Questionnaire. As an easier alternative, participants can simply think about the formal and informal social network in their area.

Task B

Asking for social support: Ask participants to practise asking for social support, focusing on broadening or strengthening their social network. Ask them to then describe one of their experiences on the Asking for Support Questionnaire, explaining why it was important and how they felt. As an easier alternative, participants can simply think about their experiences of asking for social support, focusing on broadening or strengthening their social network. If possible they can then describe one of these experiences on the Asking for Support Questionnaire. Summarise the session, presenting Slides A, B, C, D, E, F, G or H again, if desired.

Handouts

Social Support Questionnaire Asking for Support Questionnaire

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Part 5 Appetiser: EduPark Education Programme Goal: • To increase participants’ awareness and understanding of their experiences throughout the EduPark Education Programme. Contents Reflect on your experiences during the EduPark programme

Instructions Ask participants to reflect on their experiences during the EduPark programme. Present the following questions (writing the questions on a flip chart if desired) and ask participants to consider their answers to these questions before the next session: 1.

Has my knowledge increased as a result of taking part in this programme? 2. Was it helpful to take part in the group? Why or why not? 3. Did I expect anything else from the experience? If so, what?

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Session 7: Social Support Materials ❏ ❏ ❏ ❏ ❏

Slides A–H Guidelines for Seeking Social Support (people with PD) – handout Guidelines for Seeking/Giving Social Support (carers) – handout Social Support Questionnaire Asking for Support Questionnaire

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Slides A–H (copy on appropriate medium) A. SOCIAL SUPPORT Social Support is a source of help from your relationship network that may directly affect your psychological and physical wellbeing. Social Network  Social Bond  Social Support

B. DIFFERENT KINDS OF SOCIAL SUPPORT 1) Formal Social Support (Formal Social Network)  General Practitioners  Specialists  Psychologists  NHS  Care at home services (Meals on Wheels, home help)  Social services  Social worker  Respite care 2) Informal Social Support (Informal Social Network)  Family Members  Friends  Colleagues  Neighbours  PD patient and carer associations

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Session 7: Social Support

C. IMPORTANCE OF SOCIAL SUPPORT Emotional Support (from friends, neighbours, colleagues, family members)  can enhance your feelings of self-esteem and help you maintain your unique identity Practical Support (from general practitioners, specialists, social workers, associations, care at home services, Patients’ Rights Associations)  can help reduce your emotional and physical stress  can improve your overall network of support Financial Support (through social workers or other agencies)  provides economic benefits

D. IMPORTANCE OF SOCIAL SUPPORT FOR PARKINSON’S DISEASE  For people with PD: social support can help you cope with the feelings of loneliness, depression, anxiety, low self-esteem and isolation that sometimes accompany the illness.  For carers: social support can help you cope with psychological and physical stress, and help you maintain your own “space”, separate from the problems related to PD.

E. HOW TO GET SUPPORT FROM THE FORMAL NETWORK  Know what your rights are  Know what organisations/systems are in place to provide information and support  Take an active part in the social network  Take part in social events

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F. HOW TO GET SUPPORT FROM THE INFORMAL NETWORK  Express your emotions  Ask for help whilst maintaining your autonomy

G. GUIDELINES FOR SEEKING SOCIAL SUPPORT – PEOPLE WITH PD How to receive support:  Ask for help only in case of real need while maintaining your independence as much as possible  Learn to share your own experiences with others  Take an active part in self-help groups, sharing your experiences with the group  Focus on your own abilities  Learn whom to refer to for specific needs

H. GUIDELINES FOR SEEKING/GIVING SOCIAL SUPPORT – CARERS How to receive support:  Express and share your own emotions and feelings in intimate relationships  Find time for yourself (for example, going out without the person you care for)  Take care of your health  Take an active part in self-help groups  Learn whom to refer to for specific needs How to give support to the person you care for:  Let the person you care for freely express his/her emotions and needs  Give support to the person you care for in activities of daily living without taking over

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Session 7: Social Support

Guidelines for Seeking Social Support: People with PD How to receive support: •

Ask for help only in case of real need, whilst maintaining your independence as much as possible

• Learn to share your own experiences with others • Take an active part in self-help groups, sharing your experiences with the group •

Focus on your own abilities

• Learn whom to refer to for specific needs

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Guidelines for Seeking/Giving Social Support: Carers How to receive support: •

Express and share your own emotions and feelings in intimate relationships

•

Find time for yourself (for example, going out without the person you care for)

•

Take care of your health

•

Take an active part in self-help groups

•

Learn to whom you can refer for specific needs

How to give support to the person you care for: •

Let the person you care for freely express his/her emotions and needs

•

Give support to the person you care for in activities of daily living without taking over

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Session 7: Social Support

Social Support Questionnaire Formal and Informal Social Network

Together with your partner/carer/friend, please collect information about the social network in your area and write it down. Formal social network: general practitioners, specialists, NHS, care at home services, social services, psychologists, social workers, respite care. Informal social network: family members, friends, colleagues, neighbours, PD associations ....................................................................................................................................... ....................................................................................................................................... ....................................................................................................................................... ....................................................................................................................................... ....................................................................................................................................... ....................................................................................................................................... ....................................................................................................................................... ....................................................................................................................................... ....................................................................................................................................... ....................................................................................................................................... .......................................................................................................................................

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Asking for Support Questionnaire Please put a cross in the appropriate boxes: From whom did you ask support?  Relative  Friend  Psychologist

 General practitioner  Neurologist  Partner  PD Association  Other ................................................

What did you ask for? ........................................................................................................ Did you find any difficulties in asking for help?

Yes



No



If yes, what kind of difficulties were they? ......................................................................................................... Did you overcome these difficulties?

Yes



No



Did you receive what you asked for?

Yes 

No



How did you feel after this experience? .........................................................................................................

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Session 8: Review of the Programme and a Look Forward Christian Gerlich, Michael Macht, Martina Schradi and Heiner Ellgring

Patient Education for People with Parkinson's Disease and their Carers: A Manual. Edited by Marcia Smith Pasqualini and Gwenda Simons. Copyright © 2006 John Wiley & Sons, Ltd.

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Session 8: Review of the Programme

Session 8: Review of the programme and a look forward Overview The education programme is reviewed and discussed. Participants compare the programme outcome with their expectations when they started the programme. The programme is concluded with a group exercise during which the participants share wishes and advice for the future with each other. Finally, they complete a programme evaluation questionnaire.

Materials ❏ ❏ ❏ ❏

Goals and expectations: Notes collected on flip chart during Sessions Postcard Flip chart, markers, pens for participants Evaluation Questionnaire

Part

1

Discuss homework Social support

Discuss experiences asking for (or simply thinking about) social support

Review of previous sessions

The seven sessions are reviewed and the main topics are summarised Participants discuss which information, skills and exercises were most important for them, and compare their expectations and achievements

2

3

Contents

Exercise A look forward

Writing a postcard: Advice, greetings and wishes from the other participants

Evaluation Questionnaire

Participants evaluate the programme by completing a questionnaire.

Up to 0:30’

Up to 1:00’

Up to 1:30’

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Part 1 Discuss Homework: Social Support

0:30’

Goal: • To support the application of knowledge and skills from the previous session (Social Support) in everyday life.

Contents

Instructions

Discuss homework: Social support

Discuss the homework assigned in Session 7 (Social Support). Ask each of the participants to describe briefly their experiences practising skills and using knowledge related to social support.

Task A: Collecting information about the social network

Participants collected information about the existing social network in their area and described it on the Social Support Questionnaire.

Task B: Asking for social support

Participants attempted to ask for social support, focusing on the importance of broadening or strengthening their social network. Using the Asking for Support Questionnaire, they were asked to describe why the support was important and how they felt.

As an easier alternative, participants simply thought about the social network available in their area.

As an easier alternative, participants simply thought about previous experiences of asking for social support and, if possible, described these experiences on the Asking for Support Questionnaire. Note for group leader

256

It may be very difficult for participants to ask for help. It is therefore important to focus on ways that relationships can be improved by asking for help. Ask participants to provide examples of times when asking for help improved their relationships.

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Session 8: Review of the Programme

Part 2 Review of Previous Sessions 0:30’ – 1:00’

Goal: • To reflect on experiences throughout the programme and to evaluate personal progress in relation to the programme contents.

Contents Looking back: Overview

Flip Chart

Instructions Present an overview of the programme and a brief summary of each session, writing down the main components on a flip chart. • Session 1: Information about PD and searching for information • Session 2: Self-monitoring your behaviour and wellbeing • Session 3: The importance of Pleasant Activities for maintaining health and wellbeing • Session 4: Skills to recognise and manage stress • Session 5: Anxiety and Depression/The Carer’s Challenge • Session 6: Increasing Social Competence • Session 7: Seeking Social Support

Which were the most important topics?

Start a discussion about the programme by asking the following questions:

Did I reach my goals?

Ask the participants to compare their expectations about the programme with the outcome they actually achieved.

• What was the highlight of the programme for you? • Is there any particular element of the programme that you think was most useful? • Did you experience any difficulties completing the programme? • Do you have any questions that still need to be answered?

• What did you expect at the beginning of the programme? • What do you feel you have achieved? Flip Chart

Help participants answer these questions by reviewing the flip chart notes from the first session.

Note for group leader

Be sure to bring the flip chart from Session 1 describing the expectations of participants!

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How can I transfer skills to daily life?

Continue the discussion by asking participants which techniques used during the programme they can remember. Review these techniques and provide examples, with the goal of helping participants to incorporate their knowledge and skills into their daily routine. Examples could include:

Examples

• Keeping a diary stressful situations • Writing and carrying reminder cards with helpful thoughts • Reading through the Pleasant Events Schedule to find new ideas for pleasant activities • Displaying the Guidelines for Seeking Social Support in a place where they will be reminded of them every day Suggest to participants that they may benefit from continuing to learn about specific techniques that they found helpful, such as stress management, cognitive training, relaxation exercises or assertiveness training. If possible, provide a list of local resources but stress that they are now better able to locate additional information on their own!

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Part 3 Exercises: Writing a Postcard Evaluation Questionnaire

1:00’ – 1:20’

Goals: • To strengthen “social networks” within the group and provide feedback about the programme. Contents Exercise: A look forward

Instructions To end the programme we would like to collect wishes, advice and greetings for each person in the group and write them down on a postcard. You can keep the postcard and have a look at it whenever you need a boost Ask participants to tell you their wishes, advice and greetings for each other, as you write these ideas on the postcards, separately for each participant.

Evaluation Questionnaire

If desired, ask participants to evaluate the education programme by completing the Evaluation Questionnaire. Evaluation Questionnaire Postcards

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Session 8: Review of the Programme and a Look Forward Materials ❏ ❏

Postcards Evaluation Questionnaire

Session 8: Review of the Programme

Evaluation Questionnaire Below are statements relevant to the education programme you have just completed. For each statement, please tick the box that best reflects your opinion. Disagree

Agree somewhat

Agree

1. I have received helpful information about Parkinson’s disease (PD) and the possible psychosocial and social problems related to PD. 2.

The exchange of experiences and ideas within the group was helpful.

3.

The information presented in the programme often confused me.

4.

I would have liked even more information to be presented.

5. Too much theoretical information was given during the programme. 6.

Much of the information was new to me.

7.

My understanding of PD and the problems associated with PD has improved.

8.

I believe that I can now deal better with problems related to PD.

9.

Too little practical information was given during the programme.

10.

I found some of the exercises too difficult.

11.

My understanding of the psychological effects of PD has improved.

12.

In general, the programme fulfilled my expectations.

13.

The programme was appropriate for me.

14.

I would participate in another programme of a similar nature if available.

15.

I would recommend this programme to other people.

(Questionnaire adapted from Macht & Elllgring, 2003.)

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PART III: THE EDUPARK PROGRAMME: FINAL THOUGHTS

The EduPark Programme: Final Thoughts Marcia Smith Pasqualini and Gwenda Simons

Patient Education for People with Parkinson's Disease and their Carers: A Manual. Edited by Marcia Smith Pasqualini and Gwenda Simons. Copyright © 2006 John Wiley & Sons, Ltd.

The EduPark Programme: Final Thoughts

Our discussions with participants throughout the development and application stages of the EduPark programme have brought us face-to-face with the reality of the unmet psychosocial needs of many people with PD and their carers in the United Kingdom and throughout Europe. We are hopeful, however, that with the publication of this manual, access to patient education will become more widely available to people who are looking for information and support as they try to understand and manage PD. Although PD education programmes are currently available in some areas of the United Kingdom, the focus is typically on specific physical aspects of the disease, such as improving mobility through physical therapy or enhancing articulation skills with speech therapy. The most ambitious multidisciplinary programme in the United Kingdom published to date (Trend, Kaye, Gage, Owen & Wade, 2002; Wade et al., 2003) similarly focused on physical rehabilitation, although the effects of the programme on psychological wellbeing were assessed. In contrast, the EduPark programme makes direct use of psychological principles of cognitive and behaviour change to increase self-efficacy and improve quality of life. One advantage of using a patient-education approach in efforts to achieve these goals is that many people who might not be receptive to learning about psychological principles through psychotherapy or counselling are often more willing to participate in a programme such as this. A critical aspect of the EduPark programme is its “person-centred” approach, with the patient and carer viewed as experts on the disease. Participants learn that through their own efforts they can improve the functioning of the larger family/medical/social system in which they participate. This aspect of the programme is particularly important with a progressive disease such as PD, as it is clear that what many people with PD and carers fear most is the loss of control over their own lives.

Ongoing evaluation of the programme As noted in the Preface, the systematic development and formative evaluation of the programme were completed during the funding period of the EduPark grant. On the basis of extended discussions with participants across all seven countries, the Consortium concluded that the programme was perceived as valuable and informative. Moreover, preliminary data from a pre-test post-test comparison of measures of wellbeing suggest that it has beneficial effects in the short term (Macht et al., 2006; Simons, Thompson & Smith Pasqualini, 2006). However, further validation of the usefulness and cost-effectiveness of the programme requires a summative evaluation, focusing on empirically derived outcome measures using a more controlled experimental design. We are hopeful that publication of this manual will encourage additional efforts by people outside of the Consortium to contribute to such an evaluation in order to document its effectiveness and to identify ways in which the programme could be expanded and improved. Another important factor that has yet to be addressed is whether immediate benefits of the EduPark programme can be sustained. Participants are encouraged in the final session of the programme to continue to use the techniques they have learnt. However, many of the skills, such as self-monitoring, relaxation training, and stress management, must be practised on a consistent basis to be most effective. Moreover, participants’ needs are likely to change over time as the disease progresses. Therefore, we believe that “booster” sessions may be useful to encourage continued use of strategies and to help participants adapt to their changing situations. Empirical validation of these proposals is needed. 267

Patient Education for People with PD and their Carers

Adaptability of the programme From its initial conception as a joint European enterprise, the EduPark programme was constructed in such a way that it can easily be adapted to local conditions. A version of the manual has been translated into six other languages (Spanish, German, Dutch, Italian, Finnish and Estonian) and it is our hope that the programme will also be available and implemented in countries other than those in the original consortium. The programme can also be specifically adapted to fit groups with particular needs, such as younger people with PD, those in early versus late states of the disease and inpatients in rehabilitation centres.

Application of the programme for other progressive neurological diseases There is no empirical support at this time for the applicability of the EduPark programme to other progressive neurological diseases such as Alzheimer’s disease or multiple sclerosis. It seems reasonable to assume, however, that many of the components of the programme will be applicable, although the focus of the topics may differ from disease to disease. Thus, for Alzheimer’s disease the situation of the carer may be more prominent and key components would need to be adapted accordingly. For multiple sclerosis, difficulties coping with stepwise changes in symptoms may be of primary concern to patients. Nevertheless, the structure of the sessions and many of the central topics appear to be relevant for other chronic diseases.

Please send us your feedback! We would very much like to receive feedback about your experiences in leading this programme, in whole or in part. In the materials for Session 8 you will find an evaluation questionnaire that can be used to assess participants’ perceptions of the programme content and the way it was conducted. We would appreciate hearing about your results from this questionnaire and any other measures if you are willing to share them. Any enquiries, comments, suggestions or research collaboration requests can be sent to the editors (or to any of the EduPark Consortium contributors) in care of John Wiley & Sons Ltd, or by going to the Wiley website at http://www.wiley.com/go/parkinsonsdisease. In conclusion, we would like to thank again the people with PD and their carers who have taught us so much about living life with PD. Their hopes and concerns inspired and informed the EduPark programme, which we hope will in turn inspire you.

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Appendix: Assessment Scales

The following assessment scales were used in the development of the EduPark Patient Education programme: • The Unified Parkinson’s Disease Rating Scale (UPDRS) (Fahn, Elton & Members of the UPDRS Development Committee, 1987) uses a standard combination of measures and ratings to describe the symptom severity of a person with PD. The UPDRS includes the Hoehn & Yahr Scale, which allows the disease to be categorised into one of five stages. The UPDRS also includes the Schwab-England Activities of Daily Living scale (ADL), which assesses dependency on others for routine daily activities on a scale from 0 (fully dependent) to 100 (fully independent). • The Parkinson’s Disease Questionnaire-39 (PDQ-39) (Jenkinson, Fitzpatrick & Peto, 1998; Peto, Jenkinson & Fitzpatrick, 1998) contains 39 items pertaining to frequency of PD-related problems. • The Questionnaire on Psychosocial Problems in PD covers psychosocial problems related to PD. Two versions are available: one for patients (BELA-P-k) and one for carers (BELA-A-k) (Spliethoff-Kamminga, 2003a, 2003b). • The EuroQuol (EQ-5D) (Brooks, 1996) is a measure of health status, and comprises five groups of health-related statements as well as a visual analogue scale assessing present health status. • The Self-rating Depression Scale (SDS) (Zung, 1965) provides information on physical as well as psychological aspects of depression. • The Visual Analogue Scale (VAS) measures subjective wellbeing. A mark on a 10 cm line is made according to the general physical or psychological wellbeing of a person at a specific moment in time. This simple scale can be used to assess wellbeing before and after a training session to evaluate the effects of treatment.

Patient Education for People with Parkinson's Disease and their Carers: A Manual. Edited by Marcia Smith Pasqualini and Gwenda Simons. Copyright © 2006 John Wiley & Sons, Ltd.

References

Brooks, R. (1996). EuroQoL: the current state of play. Health Policy, 37 (1), 53–72. Chrischilles, E. A., Rubenstein, L. M., Voelker, M. D., Wallace, R. B. & Rodnitzky, R. L. (2002). Linking clinical variables to health-related quality of life in Parkinson’s disease. Parkinsonism and Related Disorders, 8, 199–209. Brown, S. A. (1990). Studies of educational intervention and outcomes in diabetic adults: a metaanalysis revisited. Patient Education and Counselling, 16 (3), 189–215. Cohen, F. & Lazarus, R. S. (1979). Coping with the stresses of illness. In G. Stone, F. Cohen, N. E. Adler (Eds), Health psychology – a handbook (pp. 217–254). San Francisco, CA: Jossey-Bass. Cooper, H., Booth, K., Fear, S. & Gill, G. (2001). Chronic disease patient education: lessons from metaanalysis. Patient Education and Counseling, 44, 107–117. Damiano, A. M., Snyder, C., Strausser, B. & Willian, M. K. (1999). A review of health-related qualityof-life concepts and measures for Parkinson’s disease. Quality of Life Research, 8, 235–243. De Rijk, M. C. et al. (1997). Prevalence of parkinsonism and Parkinson’s Disease in Europe (1997). The EUROPARKINSON Collaborative Study. European Community Concerted Action on the Epidemiology of Parkinson’s Disease. Journal of Neurology, Neurosurgery and Psychiatry, 62, 10–15. Devine, E. C. (1996). Meta-analysis of the effects of psychoeducational care in adults with asthma. Research in Nursing and Health, 19, 367–376. Di Fabio, R. P. (1995). Efficacy of comprehensive rehabilitation programs and back school for patients with low back pain: a meta-analysis. Physical Therapy, 75, 865–878. Ellgring, H. (1993). Fragebogen für Parkinson-Patienten: Wie informiere ich andere über meine Parkinson-Erkrankung? [Questionnaire for Parkinson patients: how do I inform others about my Parkinson’s Disease?]. Würzburg, Germany. Ellgring, H. et al. (1990). Psychosocial problems of Parkinson patients: approaches to assessment and treatment. In M. B. Streifler, A. D. Korczyn, E. Melamed, M. B. H. Youdim (Eds), Advances in neurology: Parkinson’s disease: anatomy, pathology, and treatment (pp. 349–353). New York: Raven Press. Engel, G. L. (1980). The clinical application of the biopsychosocial model. American Journal of Psychiatry, 137, 535–544. Fahn, S., Elton, R. L. & Members of the UPDRS Development Committee (1987). Unified Parkinson’s Disease Rating Scale. In S. Fahn, C. D. Marsden, D. B. Calne & M. Goldstein (Eds), Recent Development in Parkinson’s Disease, volume 2 (pp. 153–163). Florham Park, NJ: Macmillan Health Care Information. Faller, H. (2001). Patientenschulung: Konzepte und Evaluation [Patient education: Concepts and evaluation]. Praxis klinische Verhaltensmedizin und Rehabilitation, 54, 97–106. Folstein, M. F., Folstein, S. E. & McHugh, P. R. (1975). Mini Mental State: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189–198. Jenkinson, C., Fitzpatrick, R. & Peto, V. (1998). The Parkinson’s Disease Questionnaire: User manual for the PDQ-39, PDQ-8 and PDQ Summary Index. Oxford, UK: Health Services Research Unit, Department of Public Health, University of Oxford. Karlsen, K. H., Tandberg, E., Arsland, D. & Larsen, J. P. (2000). Health related quality of life in Parkinson’s disease: a prospective longitudinal study. Journal of Neurosurgery and Psychiatry, 69, 584– 589. Macht, M. & Ellgring, H. (2003). Psychologische Interventionen bei der Parkinson Erkrankung [Psychological interventions for Parkinson’s Disease]. Stuttgart, Germany: Kohlhammer GmbH. Macht, M. et al. (2006). Patient education in Parkinson’s disease: formative evaluation of a standardised programme in seven European countries. Manuscript under review.

References

Macht, M., Schwarz, R. & Ellgring, H. (2005). Patterns of psychological problems in Parkinson’s disease. Acta Neurologica Scandinavica, 111, 95–101. Maier-Riehle, B. & Härter, M. (1996). Die Effektivität von Rückenschulen aus empirischer Sicht – Eine Metaanalyse [The efficiency of back schools from an empirical viewpoint – a meta-analysis]. Zeitschrift für Gesundheitspsychologie, 4, 197–219. Martinez-Martin, P. (1998). An introduction to the concept of “quality of life in Parkinson’s disease” Journal of Neurology, 245, 2–6. McRae, C., Diem, G., Vo, A., O’Brien, C. & Seeberger, L. (2000). Schwab and England: standardization of administration. Movement Disorders, 15 (2), 335–336. Meyer, T. J. & Mark, M. M. (1995). Effects of psychosocial interventions with adult cancer patients: a meta-analysis of randomized experiments. Health Psychology, 14, 101–108. Mohr, B. et al. (1996). Behavioral treatment of Parkinson’s disease leads to improvement of motor skills and to tremor reduction. Behavior Therapy, 27, 235–255. Oertel, W. H., & Ellgring, H. (1995). Parkinson’s disease – medical education and psychosocial aspects. Patient Education and Counseling, 26, 71–79. Padgett, D., Mumford, E., Hynes, M. & Carter, R. (1988). Metaanalysis of the effects of educational and psychosocial interventions on management of diabetes mellitus. Journal of Clinical Epidemiology, 41, 1007–1030. Pentland, B., Pitcairn, T. K., Gray, J. M., & Riddle, W. J. R. (1987). The effects of reduced expression in Parkinson’s disease on impression formation by health professionals. Clinical Rehabilitation, 1, 307–313. Peto, V., Jenkinson, C. & Fitzpatrick. R. (1998). PDQ-39: A review of the development, validation and application of a Parkinson’s disease quality of life questionnaire and its associated measures. Journal of Neurology, 245, 10–14. Peto, V., Jenkinson, C., Fitzpatrick, R. & Greenhall, R. (1995). The development and validation of a short measure of functioning and well-being for individuals with Parkinson’s disease. Quality of Life Research, 4, 241–248. Sanes, J. N. (1985). Information processing deficits in Parkinson’s disease during movement. Neuropsychologia, 23, 381–392. Schrag, A., Jahanshahi, M. & Quinn, N. (2000). How does Parkinson’s Disease affect quality of life? A comparison with quality of life in the general population. Movement Disorders, 15 (6), 1112–1118. Shindler, L., Hahlweg, K. & Revenstorf, D. (1984). Effects of behavioral marital therapy on couples’ communication and problem solving skills. Journal of Consulting and Clinical Psychology, 52, 553– 566. Simons, G., Smith Pasqualini, M. C., Reddy, V. & Wood, J. (2004). Emotional facial expressivity in people with Parkinson’s disease. Journal of the International Neuropsychological Society, 10, 521– 535. Simons, G., Thompson, S. B. N. & Smith Pasqualini, M. C. (in press). An innovative education programme for people with Parkinson’s disease and their carers. Parkinsonism and Related Disorders. Smith, T. W. & Nicassio, P. M. (1995). Psychological practice: clinical application of the biospsychosocial model. In P. M. Nicassio & T. W. Smith (Eds), Managing chronic illness: a biopsychosocial perspective. Washington DC: American Psychological Association. Spliethoff-Kamminga, N. G. A., Zwinderman, A. H., Springer, M. P. & Roos, R. A. C. (2003a). Psychosocial problems in Parkinson’s disease: evaluation of a disease-specific questionnaire. Movement Disorders, 18 (5), 503–509. Spliethoff-Kamminga, N. G. A., Zwinderman, A. H., Springer, M. P. & Roos, R. A. C. (2003b). A disease-specific psychosocial questionnaire for Parkinson’s disease caregivers. Journal of Neurology 250, 1162–1168. Sudre, P., Jacquement, S., Uldry, C. & Perneger, T. V. (1999). Objectives, methods and content of patient education programmes for adults with asthma: systematic review of studies published between 1979 and 1998. Thorax, 54, 681–687.

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References

Trend, P., Kaye, J., Gage, H., Owen, C. & Wade, D. (2002). Short-term effectiveness of intensive multidisciplinary rehabilitation for people with Parkinson’s disease and their carers. Clinical Rehabilitation, 16, 717–725. Van Driel, W. G. & Keijsers, J. F. E. M. (1997). An instrument for reviewing the effectiveness of health education and health promotion. Patient Education and Counseling, 30, 7–17. Wade, D. T., Gage, H., Owen, C., Trend, P., Grossmith, C., Kaye, J. (2003). Multidisciplinary rehabilitation for people with Parkinson’s disease: a randomised controlled study. Journal of Neurology, Neurosurgery, and Psychiatry, 74, 158–162. WHO (2000). International Classification of Functioning, Disability and Health. http://www3.who.int/ icf/icftemplate.cfm. Zung, W. W. K. (1965). A self-rating depression scale. Archives of General Psychiatry, 12, 63–70.

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References

Source list for individual sessions Session 1: Information • Information in this session is based principally on sources cited in Chapter 1.

Session 2: Self-Monitoring •

Macht, M. & Ellgring, H. (2003). Psychologische Interventionen bei der Parkinson-Erkrankung. Stuttgart: Kohlhammer GmbH.

Session 3: Pleasant Activities •

Macht, M. & Ellgring, H. (2003). Psychologische Interventionen bei der Parkinson-Erkrankung. Stuttgart: Kohlhammer GmbH. • Lewinsohn, P. M. & Libet, J. (1972). Pleasant events activity schedules and depression. Journal of Abnormal Psychology, 79, 291–295.

Session 4: Stress Management •

Macht, M. & Ellgring, H. (2003). Psychologische Interventionen bei der Parkinson-Erkrankung. Stuttgart: Kohlhammer GmbH. • Assadi, A. & Skansén, J. (2000). Stresshandboken. Lär dig förstå och hantera din stress. Lund: Studentlitteratur. • Kataja, J. (2003). Rentoutuminen ja voimavarat. Helsinki: Edita. • Katajainen, A., Lipponen, K. & Litovaara, A. (2003). Voimavarat käyttöön. Helsinki: Duodecim.

Session 5: Anxiety and Depression/The Carer’s Challenge • Bayés, A. (2000). Tratamiento integral de la persona afectada por la enfermedad de Parkinson. Barcelona: Ed Fundació Guttmann. • Bayés, A. (2003). La enfermedad de Parkinson – cuidando al cuidador. Madrid: Ed Acción Médica, SA. • Crespo, M. C. & Bayés, A. (2004). Enfermedad de Parkinson: ‘Problemas psicológicos en la EP’. Consejos y estrategias para enfermos y cuidadores. Barcelona: Ed Bristol-Myers Squibb. • Vallejo Ruiloba, J. & Gastó Ferrer, C. (2000). Trastornos afectivos. Ansiedad y depresión. 29. Edición. Barcelona: Ed. Masson SA.

Session 6: Social Competence •

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Macht, M. & Ellgring, H. (2003). Psychologische Interventionen bei der Parkinson-Erkrankung. Stuttgart: Kohlhammer GmbH.

References

• Schindler, L., Hahlweg, K. & Revenstorf, D. (1984). Effects of behavioral marital therapy on couples’ communication and problem-solving skills. Journal of Consulting and Clinical Psychology, 52 (4), 553–566.

Session 8: Summary •

Macht, M. & Ellgring, H. (2003). Psychologische Interventionen bei der Parkinson-Erkrankung. Stuttgart: Kohlhammer GmbH.

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