Table Of ContentA 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
