A Personal Guide to Living with Progressive Memory Loss PDF
Preview A Personal Guide to Living with Progressive Memory Loss
A Personal Guide to Living with Progressive Memory Loss of related interest Dancing with Dementia My Story of Living Positively with Dementia Christine Bryden ISBN 978 1 84310 332 5 Alzheimer A Journey Together Federica Caracciolo Foreword by Luisa Bartorelli ISBN 978 1 84310 408 7 Involving Families in Care Homes A Relationship-Centred Approach to Dementia Care Bob Woods, John Keady and Diane Seddon Bradford Dementia Group Good Practice Guides ISBN 978 1 84310 229 8 Person-Centred Dementia Care Making Services Better Dawn Brooker Bradford Dementia Group Good Practice Guides ISBN 978 1 84310 337 0 Ethical Issues in Dementia Care Making Difficult Decisions Julian C. Hughes and Clive Baldwin Bradford Dementia Group Good Practice Guides ISBN 978 1 84310 357 8 Evaluation in Dementia Care Edited by Anthea Innes and Louise McCabe ISBN 978 1 84310 429 2 Design for Nature in Dementia Care Garuth Chalfont Bradford Dementia Group Good Practice Guides ISBN 978 1 84310 571 8 A Personal Guide to Living with Progressive Memory Loss Sandy Burgener and Prudence Twigg Jessica Kingsley Publishers London and Philadelphia First published in 2007 by Jessica Kingsley Publishers 116 Pentonville Road London N1 9JB, UK and 400 Market Street, Suite 400 Philadelphia, PA 19106, USA www.jkp.com Copyright © Sandy Burgener and Prudence Twigg 2007 All rights reserved. No part of this publication may be reproduced in any material form (including photocopying or storing it in any medium by electronic means and whether or not transiently or incidentally to some other use of this publication) without the written permission of the copyright owner except in accordance with the provisions of the Copyright, Designs and Patents Act 1988 or under the terms of a licence issued by the Copyright Licensing Agency Ltd, Saffron House, 6-10 Kirby Street, London EC1N 8TS. Applications for the copyright owner’s written permission to reproduce any part of this publication should be addressed to the publisher. Warning: The doing of an unauthorised act in relation to a copyright work may result in both a civil claim for damages and criminal prosecution. Library of Congress Cataloging in Publication Data Burgener, Sandy, 1947- A personal guide to living with progressive memory loss / Sandy Burgener and Prudence Twigg. p. cm. Includes bibliographical references and index. ISBN 978-1-84310-863-4 (pbk. : alk. paper) 1. Memory disorders--Prevention-- Popular works. I. Twigg, Prudence, 1956- II. Title. RC394.M46B87 2007 616.8'3--dc22 2007015427 British Library Cataloguing in Publication Data A CIP catalogue record for this book is available from the British Library ISBN 978 1 84310 863 4 ISBN pdf eBook 978 1 84642 719 0 Printed and bound in the United States by Thomson-Shore, Inc. This book is dedicated to Michelle—one of the finest people we know. After one support group meeting, Michelle, diagnosed with Alzheimer’s disease in her late fifties, asked if we had any books she could read to help her learn about her disease. Michelle described how she had been trying to read the books her husband had been reading, but had given up reading them. Michelle did not give up reading the other books because they were too hard for her to under- stand. She gave up reading them because they were just “too depressing.” Michelle, you have always inspired me. Michelle, this book is for you and the many other brave people with memory loss who have touched our lives. May it be uplifting to each of you. As we have said for years in our support groups, you are all truly the bravest people we know. Acknowledgements This book is written to honor the hundreds of people with progressive memory loss whom we have met in our clinical practice, research, and support groups over the past 20 years. We are especially grateful to the 96 families that took part in our study of quality of life in memory loss, with some families being in the study for as long as four years. Each person has contributed to our under- standing of the needs of these individuals. Each person is represented in this book. We wish we could list each of you by name, as you have each helped shape how we approach the care of people with memory loss. We have become better listeners, clinicians, researchers, advocates, and support group leaders because of our time and conversations with each of you. We want to acknowledge the support and love of our family and friends, especially our children and husbands. We could not undertake such an impor- tant project without the support of the people closest to us. Thank you for your patience, love, and encouragement. Contents Introduction 9 Chapter 1 What Progressive Memory Loss Means to You: Claiming the Diagnosis 11 Chapter 2 Maintaining Personhood 24 Chapter 3 Maintaining Important Roles in Your Life 38 Chapter 4 Understanding the Stigma of Progressive Memory Loss: Managing Your Responses to the Behaviors of Others 58 Chapter 5 Communicating with Others 71 Chapter 6 Staying Active and Functional 87 Chapter 7 Staying Physically Healthy: Managing Physical Illnesses, Medications, and Self-Care Needs 101 Chapter 8 Staying Mentally Healthy: Managing Memory Loss and Impaired Thinking 121 Chapter 9 Finding Hope 139 REFERENCES 147 BIBLIOGRAPHY 148 INDEX 153
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