Dementia reimagined : building a life of joy and dignity from beginning to end

Dementia reimagined Building a life of joy and dignity from beginning to end

Tia Powell

Book - 2019

"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 p...ill. 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"--

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Subjects
Dementia.
Dementia > Patients > Care.
Alzheimer's disease.
Alzheimer's disease > Patients > Care.
Published
New York : Avery, an imprint of Penguin Random House [2019]
Language
English
Main Author
Tia Powell (author)
Physical Description
310 pages ; 24 cm
Bibliography
Includes bibliographical references (pages [279]-298) and index.
ISBN
9780735210905
  • Chapter 1. De-'Men-Sha: An Introduction
  • Chapter 2. Invisible
  • Chapter 3. The Big House: Its Rise and Fall
  • Chapter 4. Exitus Letalis
  • Chapter 5. Darkness into Light
  • Chapter 6. Princesses and Presidents: Dementia Rebranded
  • Chapter 7. Dementia's Progress
  • Chapter 8. The Amyloid Hypothesis Falls Apart
  • Chapter 9. Money, Money, Money
  • Chapter 10. Laborers of Love
  • Chapter 11. Try a Little Tenderness
  • Chapter 12. A Good Ending
  • Acknowledgments
  • Notes
  • Index
Review by Booklist Review

Dementia will strike a third to one-half of Americans by the time they're 85. These statistics seem depressing, but Powell manages to give hope to families who want to improve their loved ones' quality of life. How can we make every remaining day a good day? she asks. Among other things, she suggests collecting a few moments of joy or even sorrow by making a nostalgic playlist. (Her own includes Earth, Wind & Fire's Let's Groove. ) Powell is a medical expert as director of the Montefiore Einstein Center for Bioethics and a professor of psychiatry at the Albert Einstein College of Medicine, but her knowledge also stems from her mother's and grandmother's dementia, which she bets she'll develop, too. Powell cites many well-known people with Alzheimer's, covers the history of the Alzheimer's Association and the National Institute on Aging. She notes that 99.6-percent of experimental drugs to treat Alzheimer's fail and convincingly argues that people should stop pinning hopes onto a magic pill. It's far better to concentrate on preserving dignity and offering empathic, affordable, flexible care.--Karen Springen Copyright 2019 Booklist

From Booklist, Copyright (c) American Library Association. Used with permission.
Review by Library Journal Review

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 © Copyright 2019. Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.

(c) Copyright Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.
Review by Kirkus Book Review

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. Copyright Kirkus Reviews, used with permission.

Copyright (c) Kirkus Reviews, used with permission.

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