Self Management of Chronic Disease: Alzheimer’s Disease

159 Pages·2009·4.34 MB·English

by  Sabine Bährer-Kohler Dr.

Sabine Bährer-Kohler (Ed.)
Self Management of Chronic Disease
Alzheimer’s Disease
Sabine Bährer-Kohler (Ed.)
Self Management
of Chronic Disease
Alzheimer’s Disease
With 13 Figures and 13 Tables
123
Dr. Sabine Bährer-Kohler
Postfach 3244, 4002 Basel
SWITZERLAND
ISBN 978-3-642-00325-7 Springer Medizin Verlag Heidelberg
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V
Preface
This book will support an issue as important as self-management of chronic diseases, espe-
cially AD, in finding its way into the daily life of patients and their caregivers as well as into
treatment worldwide. It is written for healthcare professionals, aging researchers/scientists,
patients with Alzheimer’s disease and their caregivers, managers of eldercare facilities, public
health authorities, umbrella organisations of Alzheimer associations, Alzheimer associations,
health care administrators, health economists and government officials.
It is my pleasant duty to thank Merz Pharma (Schweiz) AG in Allschwil-Switzerland to
purchase 40 copies of the book.
To finish this book, a long and sometimes arduous path had to be traveled. Now that it
is over, I feel profoundly thankful towards all authors for participating in this project, par-
ticularly Eva Krebs-Roubicek, MD for her contribution, the three models on the cover of
this book; and especially to Julie and Jean-Luc for their great understanding and loving as-
sistance.
Sabine Bährer-Kohler, Editor of the book
VII
Foreword
Alzheimer’s disease is one of those diseases which is steadily increasing worldwide. Treating
Alzheimer’s disease is able to modify its course but does not yet cure it. Alzheimer’s disease is
an enormous challenge not only for the afflicted person but also for the relatives.
Many publications over recent years have described various topics related to Alzheimer’s
disease and means of coping with the condition. Coping concerns the way of dealing with the
disease by relatives as well as by the afflicted person. Coping strategies can be considered as a
part of self-management, as understood by the authors and editor of this book.
The topic of self-management has been described and introduced to the public by several
authors in many different countries, for example by Prof. Lorig and her co-workers in the con-
text of chronic diseases. In some of these publications training courses for self-management
of chronic disease are described, as they are offered by different institutions. Only seldom
these publications address Alzheimer’s disease. This lack might be due to different reasons,
for instance, directly related to the disease itself, as a consequence of cognitive decline. An-
other reason could be the doubt that a demented person could manage the disease, and if so,
for how long and in which form? It is also questionable whether a relative can take over the
role of an expert during the course of Alzheimer’s disease.
The aim of self-management in chronic disease is to improve coping mechanisms. It con-
cerns self-determination as well as acceptance byythe environment, and includes all questions,
problems and active adaptation to changing needs. It means also that during this difficult
phase of life one should not just let go, but actively and endurably pursue own interests, man-
age the activities of daily life and the emergency situations.
Prof. Lorig has clearly documented that a chronic disease is manageable. Training courses
concerning self-management in chronic disease can help towards this aim, to cope in a struc-
tured and informed way.
This book contains articles describing the work of authors from different professional
backgrounds and different countries. The book begins with basic information about self-
management, ageing and dementia. Further chapters are concerned with aspects of working
with relatives and other caregivers in their care for demented persons. The authors discuss
background thoughts as well as end-of-life care. They focus on worldwide used training pro-
grams for chronic disease in general, and particular self-management programs for patients
suffering from the Alzheimer’s disease and their relatives. The book does not avoid another
important aspect, the economic situation and applicability of the presented programs. Imple-
mentation of such programs will be only possible, if aspects of efficacy and of economic ef-
ficiency are considered.
One can only wish that the topic of self-management, with the help of this book, will find
its way into day-to-day clinical practice of caring for patients suffering from Alzheimer’s dis-
ease and their relatives.
Prof. Dr. Franz Müller-Spahn
IX
Table of Content
1 Chronic Disease and Self-Management Complications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .32
– Aspects of Cost Efficiency and Current Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .32
Policies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .33
Sabine Bährer-Kohler, Eva Krebs-Roubicek References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .33
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .2 3.2 Dementia. State of the Art – Cognitive,
Chronic Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .2 Behavioural and Psychopathological
Chronic Disease Worldwide . . . . . . . . . . . . . . . . . . . . .2 Symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .34
Diabetes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .4 Main Features of the Dementia Syndrome . . . . .34
Cardiovascular Disease . . . . . . . . . . . . . . . . . . . . . . . . .5 Common Cognitive Symptoms . . . . . . . . . . . . . . . .35
Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5 Impairment in Intellectual Functioning and
Alzheimer’s Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . .5 Disturbances in Executive Functioning . . . . . . . . .37
Self-Management of Chronic Disease . . . . . . . . . . .5 Physical and Neurologic Problems Related
Aspects of New Approaches Towards with Behavior in Dementia . . . . . . . . . . . . . . . . . . . .38
Self-Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .7 Behavioral and Psychopathologic Symptoms
Benefits of Self-Management . . . . . . . . . . . . . . . . . . .8 of Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .38
Cost of Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .9 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .40
Current Legislation and Policies . . . . . . . . . . . . . . . .10
Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11 4 Alzheimer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .43
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .12 Jerzy Leszek, Andrzej Kiejna,
Ulrich Michael Hemmeter, Ulrich Kropiunigg
2 Aspects of Aging . . . . . . . . . . . . . . . . . . . . . . . . .15 4.1 Alzheimer’s Disease – A Global Disease
Nicoleta Tătaru, Urs Kalbermatten Report . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .44
2.1 General Aspects . . . . . . . . . . . . . . . . . . . . . . . . .16 History . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .44
Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .16 Alzheimer’s Disease (AD) . . . . . . . . . . . . . . . . . . . . . .44
Normal, Active and Successful Aging . . . . . . . . . .16 Expected Cases . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .44
Morbid Aging and Mental Health . . . . . . . . . . . . . .17 Socioeconomic Factors . . . . . . . . . . . . . . . . . . . . . . . .45
Ageism, Elder Abuse and Stigma . . . . . . . . . . . . . .18 Epidemiology of Dementia in Poland . . . . . . . . . .46
Mature Mind and an Optimistic View References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .46
of Aging. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .19 4.2 S tate of the Art – Treatment of
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .20 Cognitive, Behavioral and Psycho-
2.2 Consequences for Dementia . . . . . . . . . . . . .20 pathological Symptoms of Alzheimer’s
Defining Old Age as a Phase of Life . . . . . . . . . . . .20 Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .47
Life Design . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .21 Pharmacotherapy of Alzheimer’s Disease . . . . . .48
Action Theory and Self-Organization . . . . . . . . . . .22 Nonpharmacological Therapy . . . . . . . . . . . . . . . . .53
Interaction and Dementia . . . . . . . . . . . . . . . . . . . . .23 Interventions for Behavioral and Psychological
A Wide View in Analysis and Promotion . . . . . . . .26 Symptoms (BPSD) . . . . . . . . . . . . . . . . . . . . . . . . . . . . .53
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .26 Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .55
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .55
3 Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .29 4.3 An Alternative Description:
Ilkin Icelli, Ignat Petrov Alzheimer’s Disease as a Biographical
3.1 Mild Cognitive Impairment . . . . . . . . . . . . . . .30 Phenomenon . . . . . . . . . . . . . . . . . . . . . . . . . . . .57
Historical Background and Definition . . . . . . . . . .30 The Medium is the Message . . . . . . . . . . . . . . . . . . .57
Causes and Risk Factors . . . . . . . . . . . . . . . . . . . . . . .30 Unintended Disclosures . . . . . . . . . . . . . . . . . . . . . . .58
Symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .31 Compensation and the Fragile Self . . . . . . . . . . . .60
Diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .31 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .65
X Table of Content
5 Caregivers Care with Alzheimer’s Disease, Barriers to Use of Self-Management Tools
Prevention of Caregivers Burn-Out . . . . . . . .67 in Nigeria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .95
Aleksandra Milićević-Kalašić Recommendations and Conclusions . . . . . . . . . . .96
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .68 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .97
Patient/Caregiver Dyad . . . . . . . . . . . . . . . . . . . . . . . .68
Caregiver Burden and Consequences . . . . . . . . . .68 8 Self-Management . . . . . . . . . . . . . . . . . . . . . . . .99
Gender Differences in the Experience of Alexander Kurz, Cathy Greenblat,
Burden. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .69 Francoise Guillo-Ben Arous, K. Jacob Roy
Prevention of Caregivers’ Burn-out . . . . . . . . . . . . .69 8.1 Self-Management of Patients with
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .70 Alzheimer’s Disease . . . . . . . . . . . . . . . . . . . . 100
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 100
6 Psychological Aspects of Promotion Prerequisites of Self-Management in Patients
of Self-Management . . . . . . . . . . . . . . . . . . . . .73 with AD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 100
Dorothee Karl Goals of Self-Management in People
Self-Perception and Self-Concept . . . . . . . . . . . . . .74 with AD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .101
Motivation and Stereotyping . . . . . . . . . . . . . . . . . .75 Components of Self-Management in
Approaches to Improve Self-Management . . . . .76 People with AD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .77 Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103
7 Self-Management Programs . . . . . . . . . . . . . .79 8.2 Self-Management of Patients – Another
Sabine Bährer-Kohler, Eva Krebs-Roubicek, Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . 105
Olusola T. Ephraim-Oluwanuga Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 105
7.1 Management and Self-Management Photos and Commentary . . . . . . . . . . . . . . . . . . . . 106
Programs for Chronic Disease – Tools, Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 111
Transformation and Promotion . . . . . . . . . 80
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .80 9 End-of-life Care for Patients with
Models . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .80 Alzheimer’s Disease . . . . . . . . . . . . . . . . . . . . .113
Self-Management Programs . . . . . . . . . . . . . . . . . . .81 Jenny T. van der Steen, Luc Deliens
Tools/Scales for the Examination of Specific Challenges and Opportunities
Self-Management and Self-Care . . . . . . . . . . . . . . .86 in End-of-Life Care for Patients with
Aspects of the Transformation of Alzheimer’s Disease . . . . . . . . . . . . . . . . . . . . . . . . . 114
Self-Management and Chronic Disease . . . . . . . .86 What is Palliative Care? . . . . . . . . . . . . . . . . . . . . . . 114
Aspects of Promotion of Self-Management Palliative Care in Dementia . . . . . . . . . . . . . . . . . . 115
in Chronic Disease . . . . . . . . . . . . . . . . . . . . . . . . . . . .88 What is Known About Dying With
Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .88 Dementia and How Advanced Is Palliative
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .89 Care in Dementia Patients? . . . . . . . . . . . . . . . . . . 116
7.2 Tools of Self-Management and Their Over-Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 116
Application in Low-Resource Treatment Under-Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . 116
Settings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .91 Recent Developments in Palliative
Nigeria as an Example of a Low-Resource Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 117
Setting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .92 Effectiveness of Treatments and Other
What Self-Management Methods are Interventions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 117
Available in Nigeria?. . . . . . . . . . . . . . . . . . . . . . . . . . .92 Self-Management at the End of Life With
Alzheimer’s Dementia in Nigeria . . . . . . . . . . . . . . .92 Dementia: Advance Care-Planning . . . . . . . . . . . 118
Self-Management Tools and Alzheimer’s Principles of Advance Care-Planning . . . . . . . . . 118
Disease in Nigeria . . . . . . . . . . . . . . . . . . . . . . . . . . . . .93 Dementia Patients’ Involvement in
Potential Benefits of Use of Self-Management Decision-Making . . . . . . . . . . . . . . . . . . . . . . . . . . . . 118
Tools in Low-Resource Settings . . . . . . . . . . . . . . . .94 Advance Care-Planning in Dementia . . . . . . . . . 118
XI
Table of Content
Advance Care-Planning in Dementia: 11 Financial Benefits of Self-Management . . .141
Is It Helpful?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 119 Julia Hintermann
Anticipating Problems in Dementia . . . . . . . . . . 119 Present and Future Challenges . . . . . . . . . . . . . . 142
Self-Management at the End of Life With Family Caregivers – the World’s Largest
Dementia: Family Caregiver Issues . . . . . . . . . . . 119 Care Service . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 143
Communication and Decision-Making Family Member Self-Management . . . . . . . . . . . 144
with Family Caregivers . . . . . . . . . . . . . . . . . . . . . . 119 Efficiency of Programmes to Support Patient
Grief and Bereavement . . . . . . . . . . . . . . . . . . . . . . 120 Autonomy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 145
Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 120 Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 147
Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . 120 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 148
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 120
Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . .151
10 Self-Management of Caregivers. . . . . . . . . .125 Sabine Bährer-Kohler
Yung-Jen Yang, Marja Saarenheimo,
Ulla Eloniemi-Sulkava, Kaisu Pitkälä Subject Index . . . . . . . . . . . . . . . . . . . . . . . . . . .153
10.1 Self-Management Approaches of
Caregivers in Dementia-Caring . . . . . . . . 126
Roles of Caregivers and the Needs of the
Patients with Dementia . . . . . . . . . . . . . . . . . . . . . 126
Needs of Caregivers: Propagations and
Limits . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 126
General Principles . . . . . . . . . . . . . . . . . . . . . . . . . . . 127
The Initiation of Self-Management for
Dementia Caring . . . . . . . . . . . . . . . . . . . . . . . . . . . . 127
Self-Management Approaches Across the
Stages of Dementia . . . . . . . . . . . . . . . . . . . . . . . . . 128
Approaches at the Mild stage of
Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 129
Approaches at the Moderate Stage of
Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 129
Approaches at the Advanced Stage of
Dementia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 130
Preventive Approaches for Psychiatric
Illness of Caregivers . . . . . . . . . . . . . . . . . . . . . . . . . 131
Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 131
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 131
10.2 Enhancing Empowerment and
Self-Management in Elderly Families
with Dementia . . . . . . . . . . . . . . . . . . . . . . . 132
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 132
Concepts Related to Self-Management
and How They Affect Care-giving Families . . . 133
How to Support Self-Management in Elderly
Care-giving Families with Dementia . . . . . . . . . 137
Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 138
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 138
XIII
List of Contributors
Editor: Greenblat, Cathy Professor Kiejna, Andrzej Prof. Dr
Bährer-Kohler, Sabine Dr. Emerita of Sociology, Department of Psychiatry
holder of a Doctorate in Social Rutgers University Wroclaw Medical University
Science (rer.soc). – University of 122, Boulevard Carnot Wybrzeże Ludwika Pasteura 10
Tübingen, a Diploma in Education 06300 Nice 50-367 Wroclaw
– University of Education – Frei- FRANCE POLAND
burg, and a Diploma in Social
Work and Social Education – Guillo-Ben Arous, Francoise MD Krebs-Roubicek, Eva MD
Protestant University of 110 Bleecker Street 26D Praxis für Psychiatrie Rehalp
Applied Sciences – Berlin. New York, NY 10012 Forchstr. 364
Address: Postfach 3244, 4002 Basel, USA 8008 Zürich
SWITZERLAND SWITZERLAND
E-mail: Hemmeter, Ulrich MD, PhD
[email protected] Kantonale Psychiatrische Dienste Kropiunigg, Ulrich Prof. Dr.
St.Gallen, Sektor Nord Institut für Medizinische
Deliens, Luc Prof. Dr. 9500 Wil / SG Psychologie
Professor of Public Health and SWITZERLAND Zentrum für Public Health der
Palliative Care Medizinischen Universität Wien
VU University Medical Center, Hintermann, Julia Lic. Severingasse 9
EMGO Institute for Health and Care Finkelerweg 62 1090 Wien
Research, 4144 Arlesheim AUSTRIA
& Vrije Universiteit Brussel, SWITZERLAND
End-of-life Care Research Group Kurz, Aleksander Prof. Dr.
Van der Boechorststraat 7 Icelli, Ilkin Prof. Dr. Department of Psychiatry and
1081 BT Amsterdam Atatürk Caddesi 288 Güneş Apt. Psychotherapy
THE NETHERLANDS Daire 2 Klinikum rechts der Isar
Alsancak 35220 Technische Universität München
Eloniemi-Sulkava, Ulla PhD, Izmir (TUM)
MHSc, R.N. TURKEY Möhlstr. 26
The Central Union for the Welfare 81675 München
of the Aged Kalbermatten, Urs Prof. Dr. GERMANY
Malmin kauppatie 26 Berner Fachhochschule
00700 Helsinki Hallerstr. 8 Leszek, Jerzy Prof. Dr.
FINLAND 3001 Bern Department of Psychiatry
SWITZERLAND Wroclaw Medical University
Ephraim-Oluwanuga, Olusola T. Pasteura 10
Dr. MBBS, MSc, FWACP Karl, Dorothee Priv.-Doz. Dr. 50-367 Wroclaw
Consultant Psychiatrist Seckenheimerstr. 63 POLAND
National Hospital 68165 Mannheim
Abuja GERMANY Milićević Kalašić, Aleksandra
NIGERIA PhD, MD
Trnska 7
11000 Belgrade
SERBIA