Alzheimer's Disease: Policy and Practice Across Europe PDF
Preview Alzheimer's Disease: Policy and Practice Across Europe
ALZHEIMER'S DISEASE Policy and practice across Europe Edited by Morton Warner Sally Furnish Marcus Longley and Brian Lawlor Foreword by Silvia Queen of Sweden Radcliffe Medical Press Radcliffe Medical Press Ltd 18 Marcham Road Abingdon OxonOX14 1AA United Kingdom www.radcliflFe-oxford.coin The Radcliffe Medical Press electronic catalogue and online ordering facility. Direct sales to anywhere in the world. 2002 Morton Warner, Sally Furnish, Marcus Longley and Brian Lawlor 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 or otherwise without the prior permission of the copyright owner. British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library. ISBN 1 85775 416 6 Typeset by Aarontype Limited, Easton, Bristol Printed and bound by TJ International Ltd, Padstow, Cornwall Contents Foreword v About the contributors vii Acknowledgements ix 1 Alzheimer's disease: an introduction to the issues 1 Marcus Longley and Morton Warner 2 The national policy context across Europe 11 Marcus Longley and Morton Warner 3 Ethical and legal approaches to Alzheimer's disease 2 7 Dianne Gave 4 Carer burden: the difficulties and rewards of care-giving 61 Joanna Murray and David McDaid 5 Services for people with dementia and their carers 89 Sally Furnish 6 Clinical practice in dementia care 135 Brian Lawlor, Greg Swanwick and Margaret Kelleher 7 Developing support worker training programmes for Alzheimer's care provided at home 149 Christine Flori and Michel Aberlen 8 Disseminating information on Alzheimer's disease to European stakeholders 159 David McDaid, Jean Georges and Leen Meulenberg 9 Towards coherent policy and practice in Alzheimer's disease across the EU 175 Morton Warner and Sally Furnish Index 193 This page intentionally left blank Foreword Over the past ten years increasing attention has been given to the needs of patients suffering from dementia, their families and carers. Most important of all has been the general change of attitude to a more ana- lytical and positive approach, e.g. the demand for correct diagnosis, medication, treatment and housing. The aim is no longer cure but the prospect of living life to its fullest potential, even with the handicap of dementia. Quality of life has many dimensions. Physical, mental, social and spiritual suffering and pain can be hard to express if you are suffering from dementia. And still we have to endeavour to understand the com- plex problems of all the different faces of dementia. We have to tackle the problems of the family and of the care-givers. Any illness causes anxiety. The demented patient tends to be left alone. As a family, your burden is heavy when caring for a loved, demented close relative. There are more questions than answers, more pain and grief than comfort and support. The long period of the family's bereavement is a part of the terminal pain and mourning. Not only the family but also staff members may find themselves suffering from a feeling of helplessness and exhaustion. All the time you do your best and still you feel it is not sufficient. Alzheimer's disease, together with all other kinds of dementia, is very common all over the world. This book, containing reports from the 15 different countries of the European Union, will be a great help for all to improve conditions for sufferers as well as carers, in Europe and else- where. It gives rise to three hopes in my mind. My first hope is that all those in many fields of medicine who have in their care patients with incurable brain diseases will find this book valu- able and well worth reading. Advances and initiatives in the field of treatment are important to follow up and are now likely to come not only from the traditional university hospital setting but also from special units, teams or schools teaching what dementia is - how to diagnose it, how to give optimal care or how to stimulate important research. My next hope is that this book will make it easier to do so. Demented people are usually old, are less able to care for themselves and have more long-term problems than people suffering from most other diseases. Do we see their needs? Do we learn? Do we still remember 'to cure sometimes, to relieve often, to comfort always'? Patients are excellent teachers. They are both receiving and giving, they are both strong and weak. They are like you and me, human beings, only with more diverse vi Foreword needs and a new behaviour. Do we recognise the care-givers strain asso- ciated with the changed behaviour of their loved ones, their own feelings of loss and their new role in life? My final hope is that you will give every one of these patients, and their families, of your interest, knowledge, time and love. Only then can we dare to live with confidence to our very end. Silvia Queen of Sweden Drottningholm May 2001 About the contributors Michel Aberlen SEDI Paris Christine Flori SEDI Paris Sally Furnish Head of Clinical Psychology Mersey Care NHS Trust Rathbone Hospital, Liverpool Jean Georges Executive Director Alzheimer Europe, Luxembourg Dianne Gove Information Officer/Project Manager Alzheimer Europe, Luxembourg Margaret Kelleher Consultant in Old Age Psychiatry St Camillus Hospital, Limerick Brian Lawlor Consultant Psychiatrist St Patrick's and St James's Hospitals, Dublin Marcus Longley Senior Fellow and Associate Director Welsh Institute for Health and Social Care David McDaid Research Officer in LSE Health and Social Care London School of Economics and Political Science viii About the contributors Leen Meulenberg Scientific Collaborator Belgian Inter-university Center on Health Research and Action, Brussels Co-ordinator of the Mental Health Assessment Taskforce of WHO/EURO Joanna Murray Senior Lecturer in Mental Health and Ageing Institute of Psychiatry, King's College London Greg Swanwick Consultant Psychiatrist in the Psychiatry of Old Age South Western Area Health Board and Adelaide & Meath Hospital Morton Warner Professor of Health Policy and Strategy University of Glamorgan Director, Welsh Institute for Health and Social Care Acknowledgements The editors gratefully acknowledge the co-operation of the chapter authors in the developmental work, which was vital to the production of this book. In their turn, the authors pay tribute to their many colleagues throughout Europe who worked with them on the original research upon which the chapters are based. Particular thanks also go to Lisa Griffiths and Rosemary Scadden for their tireless efforts and good humour in pro- cessing the various drafts. Our request to Sylvia, Queen of Sweden, to write a foreword met with an instant response from one who had personal involvement with Alzheimer's disease. We thank her for this and the continuing interest she shows. All of the work reported and discussed here was funded by the Euro- pean Commission.
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