Forget Memory: Creating Better Lives for People with Dementia

219 Pages·2009·2.16 MB·English

by  Anne Davis Basting

F o r g e t M e m o r y
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F o r g e t M e m o r y
Creating Better Lives for People
with Dementia
A N N E D A V I S B A S T I N G
The Johns Hopkins University Press
Baltimore
© 2009 The Johns Hopkins University Press
All rights reserved. Published 2009
Printed in the United States of America on acid-free paper
9 8 7 6 5 4 3 2 1
The Johns Hopkins University Press
2715 North Charles Street
Baltimore, Maryland 21218-4363
www.press.jhu.edu
Library of Congress Cataloging-in-Publication Data
Basting, Anne Davis, 1965–
Forget memory : creating better lives for people with dementia / Anne Davis
Basting.
p. ; cm.
Includes bibliographical references and index.
ISBN-13: 978-0-8018-9249-3 (hardcover : alk. paper)
ISBN-10: 0-8018-9249-X (hardcover : alk. paper)
ISBN-13: 978-0-8018-9250-9 (pbk. : alk. paper)
ISBN-10: 0-8018-9250-3 (pbk. : alk. paper)
1. Dementia. 2. Memory disorders in old age. I. Title.
[DNLM: 1. Dementia—psychology—Personal Narratives. 2. Quality of
Life—Personal Narratives. WT 155 B326f 2009]
RC521.B376 2009
616.8⬘3—dc22 2008037842
A catalog record for this book is available from the British Library.
Special discounts are available for bulk purchases of this book. For more information,
please contact Special Sales at 410-516-6936 or
To my memory—
Brad, Ben, Will, Tom, Sally, Ellen, Tom Jr., Seth, Susan,
Alice, Abe, Alice, Arthur, Grace, Bob, Jane, Eric, Mark,
Brenda, Harriet, David, Ken, Katherine, Elinor, Trey, Art,
Kelly, Jay, Kathy, Susan, John, Rick, Tom C., Gülgün,
David, Kate, Tim, Skip, Eric, Diane, Jim, Judy, Mark,
Manya, Howard, Stacy, Jasmine, Aims
and so many more
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Contents
Preface ix
Introduction: Dementia Is Hard, but It Needn’t
Be This Hard 1
part one: understanding our fears about
dementia 7
1 What Is (and Isn’t) Memory? How a Better Understanding
of Memory Might Ease Our Fears about Its Loss 13
2 The Danger of Stories: How Stereotypes and the Stigma of
Aging and Dementia Can Hurt Us 25
part two: the stories we tell about
dementia in popular culture 31
3 Memory Loss in the Mainstream: Tightly Told Tragedies of
Dementia with Science as Hero 35
4 Tightly Told Tragedies of Dementia: Then versus
Now 40
5 Not So Tightly Tragic: Stories That Imagine Something
More 46
6 Not Tragic at All: Stories about Memory Loss without the
Old 50
7 All of the Above: Denny Crane as the Clown of
Dementia 61
viii Contents
part three: moving through fear: stories
about dementia that inspire hope 67
8 StoryCorps and the Memory Loss Initiative 71
9 Memory Bridge 80
10 To Whom I May Concern 87
11 TimeSlips Creative Storytelling Project 94
12 Songwriting Works 104
13 Dance: “Respect” and “Sea of Heartbreak” 111
14 The Visual Arts 117
15 Duplex Planet: The Art of Conversation 127
16 The Photography of Wing Young Huie 134
17 Autobiographies by People with Dementia 145
Conclusion: How and Why to Move through Our
Fears about Dementia 155
Appendixes
A Program Description and Contact Information 169
B Recipes from Chapter 1 176
C Images and Stories of Dementia 178
D Timeline of Stories and Events in the Recent History of
Dementia 181
Notes 187
Index 201
Preface
The ideas and stories you’ll encounter in these pages emerged from my
experiences over the last 15 years working in the fields of the arts and
aging. During these years, I have been an artist, a teacher, a writer, and
the director of a center on aging. I hope that the stories and thoughts
collected here are of use to the broad range of people with whom I’ve
worked. My ideal reader is anyone invested in improving the lives of
people with dementia—from health care professionals and those study-
ing to become health care professionals, to families and friends of people
with dementia, to people with dementia themselves.
My heartfelt thanks go out to all those who shared the thoughts and
experiences that form the substance of much of this book. I want to
thank a few in particular whom I might not quote directly in these pages
but whose support has given me the courage to think outside the box.
Kathleen Woodward. Kathy’s advice, support, and thought-provoking
questions have kept me from falling between the academic cracks. Susan
McFadden. I treasure our lunches at a little family restaurant in Lomira,
Wisconsin, exactly halfway between our homes in Appleton and Mil-
waukee. Peter Whitehouse. Over lunches at anonymous restaurants in
anonymous conference hotels, Peter and I tumble into conversations
that blend medicine, media, art, history. Stephen Katz. He’s not just a so-
ciologist of aging; he’s also a jazz drummer and plays in a rock-and-roll
cover band. Rhonda Montgomery. When we both happen to be in the
office, we catch a few precious minutes together to talk about our latest
ideas. I’m thankful for the savvy model she’s provided of how to make
the system work for me. Robin Mayrl and all those at the Helen Bader
Foundation. This family foundation and their dedicated program offic-
ers supported me when all I had was an idea and some passion. I can’t
thank them enough for the risks they take in supporting some of the
edgiest work in dementia care. When the foundation sunsets, it’ll leave
an amazing legacy in the field of aging. Beth Meyer Arnold. Her vision