Forget Memory Creating Better Lives for People with Dementia
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Forget Memory This page intentionally left blank Forget Memory Creating Better Lives for People with Dementia ANNE DAVIS BASTING The Johns Hopkins University Press Baltimore © The Johns Hopkins University Press All rights reserved. Published Printed in the United States of America on acid-free paper The Johns Hopkins University Press North Charles Street Baltimore, Maryland - www.press.jhu.edu Library of Congress Cataloging-in-Publication Data Basting, Anne Davis, – Forget memory : creating better lives for people with dementia / Anne Davis Basting. p. ; cm. Includes bibliographical references and index. ISBN-: ---- (hardcover : alk. paper) ISBN-: ---X (hardcover : alk. paper) ISBN-: ---- (pbk. : alk. paper) ISBN-: --- (pbk. : alk. paper) . Dementia. Memory disorders in old age. I. Title. [DNLM: . Dementia—psychology—Personal Narratives. Quality of Life—Personal Narratives. WT Bf ] RC.B .Ј—dc 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 -- or [email protected]. The Johns Hopkins University Press uses environmentally friendly book materials, including recycled text paper that is composed of at least percent post-consumer waste, whenever possible. All of our book papers are acid-free, and our jackets and covers are printed on paper with recycled content. 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 part one: understanding our fears about dementia What Is (and Isn’t) Memory? How a Better Understanding of Memory Might Ease Our Fears about Its Loss The Danger of Stories: How Stereotypes and the Stigma of Aging and Dementia Can Hurt Us part two: the stories we tell about dementia in popular culture Memory Loss in the Mainstream: Tightly Told Tragedies of Dementia with Science as Hero Tightly Told Tragedies of Dementia: Then versus Now Not So Tightly Tragic: Stories That Imagine Something More Not Tragic at All: Stories about Memory Loss without the Old All of the Above: Denny Crane as the Clown of Dementia viii Contents part three: moving through fear: stories about dementia that inspire hope StoryCorps and the Memory Loss Initiative Memory Bridge To Whom I May Concern TimeSlips Creative Storytelling Project Songwriting Works Dance: “Respect” and “Sea of Heartbreak” The Visual Arts Duplex Planet: The Art of Conversation The Photography of Wing Young Huie Autobiographies by People with Dementia Conclusion: How and Why to Move through Our Fears about Dementia Appendixes A Program Description and Contact Information B Recipes from Chapter C Images and Stories of Dementia D Timeline of Stories and Events in the Recent History of Dementia Notes Index Preface The ideas and stories you’ll encounter in these pages emerged from my experiences over the last 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 x Preface and courage to try ideas outside her expertise are a daily inspiration. Jed Levine. He’s one of the people who just gets why the arts work. Jim Her- rington. He has photographed the Rolling Stones, Cormac McCarthy, and Roger and Rocille McConnell. The field of aging is lucky to have him. Rick Moody. He presses the acceleration pedal on any idea. Tom Fritsch. His patience and insightful readings of draft versions of this book made it all possible. Roger and Rocille McConnell. I’m deeply grateful for their trust and inspiration. And, finally, a heartfelt thanks to all my partners, philanthropic, academic, and community based, who are open to my crazy ideas. Wendy Harris. Thank you for helping make it all happen with such grace. Forget Memory This page intentionally left blank Introduction Dementia Is Hard, but It Needn’t Be This Hard Roger and Rocille McConnell sat uncomfortably in the doctor’s office. They knew something was wrong with Roger. They were afraid to hear it named, but they wanted an answer—and to know if there was some- thing they could do about it. They are doing kind of people. Roger is an active member of county committees, and Rocille is deeply involved in her synagogue’s efforts to promote social justice. So they made the ap- pointment and opened themselves to bad news. Theirs was not an ideal encounter with the medical establishment. “I was not happy . because after he told us,” says Rocille with a clear edge of anger in her voice, “the psychiatrist walked out. He said, ‘My nurse will bring you a packet.’ Well, the next day I told him how I felt. I said, ‘I can’t believe you people deal this way.’” Roger tumbled into depression. Alice lives in a nursing home. She has little awareness of the last years of her life. When her husband, Bob, visits, she recognizes him as someone she cares for. But when Bob steps back into the elevator, he is wiped clean from her consciousness. For years, Alice and Bob took long walks together. In the nursing home, Alice finds a new friend, a man who walks with her down the hallways, often arm in arm. One day, when Bob visits, he sees Alice and her walking companion strolling down the hall together and becomes irate. “I can’t believe you allowed this to happen!” he yells at the staff, insisting that they separate them. Staff members put a care plan into effect to keep the two apart, and Alice’s spirits clearly suffer. Gil cares for Victoria at home. He talks glowingly of their long life together, of raising children, bowling in leagues, ballroom dancing, and going to movies. They were a couple rich with friends. Even with Vic deep in dementia, they dance around the living room when Lawrence Welk comes on the television. Only now, Gil and Vic are alone. Their friends stopped visiting years ago. Gil says he can understand it, can Roger and Rocille McConnell, 2006. Photo by www.jimherrington.com. understand that people feel awkward around them. But the depth of his loneliness is palpable. He lies awake at night thinking about it. On an individual level, the physical and psychological challenges of dementia can knock the wind out of you. Whether the diagnosis is yours, your spouse’s, your friend’s, or your parent’s, when dementia comes into your life it can seem to deprive you of every last ounce of your strength. On a societal level, the financial and practical challenges of providing care for someone with an illness that can last up to years may well leave us with few resources to pay for anything else. Certainly, the sto- ries we read about dementia in newspapers, books, and magazines and that we hear about in films and on television and radio ring the alarm, pointing to the catastrophe that will strike when the members of the baby boom generation reach their mid-s. It is possible that dementia might affect more than half of them—estimates of the numbers of people who will develop dementia by range from to million. This book emerges from a single basic question: to what extent do our Introduction Victoria, 2007. Photo by Wing Young Huie. fears about dementia and aging contribute to the tragic conditions of liv- ing with dementia and the catastrophic economic story of dementia? We all eagerly await a “cure”—if such a thing is possible.