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Forget Memory: Creating Better Lives for People with Dementia PDF

219 Pages·2009·2.16 MB·English
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F o r g e t M e m o r y This page intentionally left blank 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 This page intentionally left blank 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

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