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

In Dementia Reimagined, psychiatrist and bioethicist Tia Powell lays bare the woefully inadequate state of care for the millions of people living today with Alzheimer’s and related dementias. Many are shuttled callously through the healthcare system, resulting in needless agony, confusion and pain. Their caregivers, usually family, have their lives upended and savings drained and are more likely than their peers to suffer from depression and other illnesses. If this is news to you, that’s because the only time dementia ever seems to be in the news is when some pharmaceutical company puts out a press release about their “promising new drug” that might alleviate Alzheimer’s. “Stop pinning your hopes on a magic pill,” writes Powell, pointing out that 99.6 percent of all clinical trials for dementia treatments have failed. She argues that resources are much more urgently needed to improve the care of the estimated 6 million Americans already living with dementia. A lively, often entertaining and very informed book.

I always recommend this book to families wanting to learn more about dementia. I'm a professional caregiver and though there are countless books available on how to be the best at caregiving, which is important, we are fortunate to have this book to teach us the backstory. When was Alzheimer's first diagnosed, how was it treated, how did we care for people in the early years, why is it taking so long to find a cure, what does the future look like, how has care improved? This is an excellent book, I highly recommend it.

Powell takes a careful look at what one might almost call the Alzheimer's Disease research industry, deflating -- really, disemboweling -- many of the still common and lauded paths to finding something really effective by way of cure or prevention. She's also a very good writer, putting things often enough in amusing terms. Only major weakness is the last section(s) regarding actions that a person can take to avoid living into the severe years that many want to avoid.

This isn’t a book on how to fight against dementia, but how to face inevitable challenges and change with courage and compassion.

I bought this book hoping to find guidance in caretaking for a dementia patient, so I had little interest in the portion of the book pertaining to the history of Alzheimer's. However, the last chapter 12 - A Good Ending - is worth the price of the book in its discussion of expensive, ineffectual life support measures frequently inflicted upon us. Dr. Powell has an strong bias here, favoring comfort measures at life's end. Those of you who want every conceivable measure taken to preserve your life will not agree with her bias. I fault her in not giving more guidance in the selection of assisted living facilities. On p. 271 she says "Look at how people live. Can they sleep and wake on their own schedule, or do they get roused rudely out of bed as in jail? Can they eat when they want, or will they miss breakfast if they don't get up on the facility's schedule?" I think it would be difficult to find a place that would serve you waffles at 3PM, but she provides little guidance on how to find a flexible facility: "A detailed analysis would take a book, but there are some helpful ones on the topic." The footnote she provides refers to a book about which one Amazon reviewer said, "I wish Span (the author) had found at least two seniors who anticipated their eventual decline - to see their future self vs. their current self - and made a rational, healthy and supportive change." These are the kind of people reading Dr. Powell's book. IMHO, Powell should have provided a detailed checklist as to how to go about finding the kind of facility she advocates, or provided a good reference for such guidance.

Dr. Powell's experience with dementia goes beyond what she has seen in her office as a psychiatrist and into the personal since her mother and grandmother both had dementia. This gives her a unique perspective on treating the disease. As she points out, dementia is fatal and cannot be cured. Slowed down a bit perhaps but not cured. So, how to we take care of people with the disease? By enabling them to live as full and joy filled life as we can help them to do. Her thoughts follow along with Dr. Atul Gawande's as he expresses them in Being Mortal. Both of these authors point toward the value of palliative care in caring for fatal diseases. And toward the value of the love and support of members of the patient's families and friends.

Well written and researched, informative, and surprisingly humorous for such a downbeat subject. A must read for anyone coping with a family member with Alzheimer's.

This book is a warm and carefully written history of dementia. It was a helpful read for me while my wife was dying of Alzheimers because it gave me a better perspective on the disease.