Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End

by Tia Powell

Overview

The cultural and medical history of dementia and Alzheimer's disease by a leading psychiatrist and bioethicist who urges us to turn our focus from cure to care.

Despite being a physician and a bioethicist, Tia Powell wasn't prepared to address the challenges she faced when her grandmother, and then her mother, were diagnosed with dementia—not to mention confronting the hard truth that her own odds aren't great. In the U.S., 10,000 baby boomers turn 65 every day; by the time a person reaches 85, their chances of having dementia approach 50 percent. And the truth is, there is no cure, and none coming soon, despite the perpetual promises by pharmaceutical companies that they are just one more expensive study away from a pill. Dr. Powell's goal is to move the conversation away from an exclusive focus on cure to a genuine appreciation of care—what we can do for those who have dementia, and how to keep life meaningful and even joyful.

Reimagining Dementia is a moving combination of medicine and memoir, peeling back the untold history of dementia, from the story of Solomon Fuller, a black doctor whose research at the turn of the twentieth century anticipated important aspects of what we know about dementia today, to what has been gained and lost with the recent bonanza of funding for Alzheimer's at the expense of other forms of the disease. In demystifying dementia, Dr. Powell helps us understand it with clearer eyes, from the point of view of both physician and caregiver. Ultimately, she wants us all to know that dementia is not only about loss—it's also about the preservation of dignity and hope.

Product Details

ISBN-13:	9780735210905
Publisher:	Penguin Publishing Group
Publication date:	04/02/2019
Pages:	320
Sales rank:	777,846
Product dimensions:	5.90(w) x 9.10(h) x 1.40(d)

About the Author

Dr. Tia Powell is Director of the Montefiore Einstein Center for Bioethics and of the Einstein Cardozo Master of Science in Bioethics program. She is Professor of Epidemiology, Division of Bioethics, and Psychiatry. She has bioethics expertise in public policy, dementia, consultation, end of life care, decision-making capacity, bioethics education and the ethics of public health disasters. She served four years as Executive Director of the New York State Task Force on Life and the Law, which functions as New York State's bioethics commission. She has worked with the Institute of Medicine on many projects related to public health and ethics, and most recently served on the 2017 report on community approaches to address health inequities. She is a board certified psychiatrist and Fellow of the New York Academy of Medicine, the American Psychiatric Association and The Hastings Center.

Table of Contents

Chapter 1 De-'Men-Sha: An Introduction 1

Chapter 2 Invisible 19

Chapter 3 The Big House: Its Rise and Fall 37

Chapter 4 Exitus Letalis 49

Chapter 5 Darkness into Light 63

Chapter 6 Princesses and Presidents: Dementia Rebranded 83

Chapter 7 Dementia's Progress 107

Chapter 8 The Amyloid Hypothesis Falls Apart 127

Chapter 9 Money, Money, Money 159

Chapter 10 Laborers of Love 187

Chapter 11 Try a Little Tenderness 211

Chapter 12 A Good Ending 249

Acknowledgments 275

Notes 279

Index 299

Editorial Reviews

"Dementia Reimagined is a brave, sobering, and profoundly humane book about one of the most serious challenges we face both as individuals and as a society. As a physician and bioethicist with a family history of dementia herself, Powell excavates the little-known history of the condition, while persuasively arguing that we must supplement our efforts to develop a cure by building an infrastructure of compassionate care to ensure a decent quality of life for our beloved elders and our future selves."—Steve Silberman, New York Times bestselling author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity

“Dementia is the defining disease of our era. Powell invites us to imagine a brighter way forward. Dementia Reimagined succeeds on many levels—it is informative and insightful, historically illuminating, scientifically accurate, socially savvy and so well written. The result is utterly engaging.”—Ira Byock, MD, author of The Four Things That Matter Most and Dying Well, Founder & Chief Medical Director, Institute for Human Caring, Providence St. Joseph Health

“In this effective demystification of dementia and Alzheimer's disease, physician and bioethicist Powell reframes two debilitating cognitive disorders…. Throughout this insightful book, the author addresses the issues facing dementia victims and their caregivers with the kind of compassion and dignity everyone deserves at the end of life. A potent hybrid of medical history/journal and memoir.”—Kirkus Reviews

“Eye-opening…. a good start toward reimagining this devastating disease.”—Library Journal

“With candor and humor, Tia Powell examines all aspects of dementia: its history, treatment, and most importantly, how to care for people as they struggle to maintain dignity and autonomy. I recommend this book to anyone with a family or friend with dementia.”—Laurie G. Jacobs, MD, President, American Geriatrics Society and Chair of Medicine at Hackensack Meridian School of Medicine at Seton Hall

“Essential reading for anyone who cares for or about a person with dementia, treats a person with dementia, or is concerned about their own risk of dementia. Powell skillfully traces the sometimes surprising, often tragic, history of this disease and explains the current state of science and medicine and how they interact with advocacy and public policy. This book gives us a vision for what a meaningful life with dementia can look like.”—Carol Levine, Director, Families and Health Care Project, United Hospital Fund; author of Navigating Your Later Years for Dummies

“For all us baby boomers and our children joking about senior moments, it turns out that a lot of people living with dementia are actually having a hell of a good time. Read this book. Accepting what is and making the best of it requires a little planning, but the payoff in joy in the moment is huge.”—Diane E. Meier, MD, Director, Center to Advance Palliative Care

“Beautiful and powerful. Dr. Powell has somehow achieved that magical and difficult balancing act of being both informative and deeply personal at the same time. So many people will be touched deeply by this book, and many will think very hard (and much more knowledgeably) about what they want, for themselves or their family member, when faced with dementia. It will go to the top of my list of books I recommend to families when they ask me what to read, and I will plead that my colleagues to read it, too.”—Henry L. Paulson, MD, PhD, Lucile Groff Professor of Neurology for Alzheimer's Disease and Related Disorders in the Department of Neurology, University of Michigan

From the Publisher

2019-02-03

A patient-focused perspective on two highly complex and stigmatized brain diseases.

In this effective demystification of dementia and Alzheimer's disease, physician and bioethicist Powell (Psychiatry and Bioethics/Albert Einstein Coll. of Medicine) reframes two debilitating cognitive disorders. She recounts her medical school years studying brain pathology, a field that has been drastically revised and improved over the decades, though definitive disease cures remain elusive. Her illuminating history of Alzheimer's disease and its legacy of treatments and policies features the German psychiatrist who identified the malady and Solomon Fuller, a black pathologist who contributed groundbreaking brain-mapping dementia studies in the early 20th century. Deinstitutionalization and assisted living facility costs refocused government attention back onto mental illness and the elderly, rebranding it as a priority just as Ronald Reagan was diagnosed with Alzheimer's in 1994. Powell smoothly moves through the advent of palliative drugs and the much-argued hypotheses of amyloid plaque accumulation as well as the debate over preventative PET scans. There is progress being made, she observes, and optimistic statistics show the numbers of older people with dementia decreasing, yet the stakes and costs remain high to find a cure. Powell profiles a geriatrician who discusses the ethical, emotional, and financial dilemmas facing loved ones of dementia patients, and she looks at the caregiving decisions that plague families. As someone who regularly participates in research studies, the author holds a great personal (and congenital) stake in her subject matter. Her "medical training," she writes, "never prepared me to address the challenges of dementia that I faced as a daughter and granddaughter," and her warm advice to readers on effective dementia care is useful and proactively delivered. In a touching conclusion, Powell discusses her imagined requests at the final stages of her life when feeding tubes and emergency room visits are forbidden in favor of daily pain management. Throughout this insightful book, the author addresses the issues facing dementia victims and their caregivers with the kind of compassion and dignity everyone deserves at the end of life.

A potent hybrid of medical history/journal and memoir.

Kirkus Reviews

02/01/2019

According to Powell (psychiatry & bioethics, Albert Einstein Coll. of Medicine, NY), 10,000 U.S. baby boomers turn 65 every day. By the time they reach 85, their chances of having dementia approach 50 percent. Here, the author traces in detail the history of our cultural response to the disease—from putting people "in jail, in workhouses, in shackles, and in mental institutions"—as well as medical understandings of the disease. Powell's mother and grandmother both had dementia, and the author foresees it in her own future. Unfortunately, she doesn't see a cure coming any time soon and feels what's needed is a concentration on care: "what we can do for those who have dementia, and how to keep life meaningful and even joyful." VERDICT While her history of treatment and research is eye-opening, Powell's vision of "building a life of joy and dignity from beginning to end" is not as specific as most concerned readers would hope. Still, it's a good start toward reimagining this devastating disease.—Marcia G. Welsh, Dartmouth Coll. Lib., Hanover, NH

Library Journal

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