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

3.91  ·  Rating details ·  328 ratings  ·  64 reviews
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--no
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Hardcover, 320 pages
Published April 2nd 2019 by Avery Publishing Group
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Average rating 3.91  · 
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Keeley
Apr 15, 2019 rated it it was amazing
Absolutely fantastic. The perfect blend of sarcasm, sass and wit that I'm looking for when talking about the state of aging and care for older adults in the United States.

Dementia Reimagined covers the history of treatment of dementia in the United States and abroad in a way that I haven't come across in the many many books I've read on dementia. I love that she spoke about Dr Fuller, an African American research who came to a lot of the same conclusions about Alzheimer's that we are coming to
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Shirley Freeman
I'm really glad I read this - especially the second half. In the first half of the book, Powell outlines the history of the definitions/ treatment course/cultural understanding of dementia and Alzheimer's disease. She writes well and accessibly but while the history is good to understand, it was less compelling than the second half. The point of outlining the history of treatment is to support her argument that we need to divert resources from only focusing on cure to focusing on care. As baby b ...more
Bill Hurlbut
May 30, 2019 rated it liked it
As someone caring for a person with dementia, I hoped for a bit more from this book.

The bulk of the early part is a history of mental illness and its treatments, both medical and societal. This was familiar from other works on mental illness, with a few exceptions, including the notable story of Solomon Fuller.

Fuller’s research refuted many of the current hypotheses about the causes of Alzheimer’s and dementia. However, he was dismissed and ultimately forgotten, in the main because he was Afri
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Lynn
Author Dr. Tina Powell discusses dementia. She points out that costs won’t go down, they will go up no matter what. Care needs to be better and treatment will cost more. Forcing people to become poor to get care is not a good thing. Closing nursing homes and limiting care for people in their homes is a recipe for disaster similar to emptying psychiatric hospitals were with little community care. The US needs to think of a better way.
Elizabeth McInerney
Jun 16, 2019 rated it really liked it
A valuable read for anyone dealing with a loved one with dementia or Alzheimers, or for anyone contemplating a future with either of these conditions. The book starts off with a history of institutionalized care for the mentally ill, which many years ago, included elders with dementia. At first, I found myself frustrated with the inclusion of this and wanted the book to get on with today, but it became clear further on that the past informs the present.

Together, my husband and I have 3 parents
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Caroline
Aug 03, 2019 rated it it was amazing
This book is extremely informative about the history of treatment for mental illness, the place of dementia and Alzheimers in that history, the distinction between those two, and the story and status of the search for treatment. Powell is a psychiatrist and doctor who has a history of Alzheimers/dementia in her family and thus knows she has a good chance of also having it, so she investigated it thoroughly. She makes it very clear that everything we've done so far to try to resolve this problem ...more
Pam
Jul 25, 2019 rated it did not like it
So disappointing! Really nothing for those of us who are dealing with someone else's dementia and trying to find the way to treat them and give them joy and dignity to the end of their lives. First came a history of how dementia ws treated inthe past, either as simple aging or as madness (mental illlness) and confinement in mental institutions. Then she went right into how she wants to be treated if she has dementia. Totally unrealistic. Waste of my time. ...more
Evelyn
Nov 23, 2019 rated it really liked it
The author explores the way society has looked at dementia through the past centuries. She is a bioethicist with common sense who expects to herself get dementia because of her genetics.

She writes about her concerns related to our society’s failure to create a realistic national policy to provide and pay for dementia care. There is no pill to stave off or cure it.

The author states in Chapter 8, “Dementia creates a lot of anxiety, as do thoughts of aging in general. It doesn’t have to be that way
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Dan Ream
Nov 24, 2021 rated it it was amazing
Interesting book on the public perception of dementia versus reality, the unreality of amyloid reduction treatment as a cure, and the many types of dementia that are not Alzheimer’s disease. The later chapters are best, suggesting that we plan our lives to end in dementia and help shape in advance what those years may look like. Lots of music and ice cream for me, as those pleasures seem to endure well despite dementia.
Karen Shilvock-Cinefro
Written by a psychiatrist whose grandmother and mother were both diagnosed with dementia.
Along with some history of Dementia the focus is on supporting the thought of finding treatment but for society to stop missing the need to provide better care.
Valerie Mahaffey
Jul 04, 2021 rated it really liked it
Take away: keep a list of simple things that make u happy so u can draw from this list when u seem to have forgotten. Playlists, hobbies, movies, friends, everything. You have to have a plan for helping others care for your psyche when communicating becomes harder.
Carol
May 26, 2019 rated it really liked it
The first half of the book delves into the history and progression in recognizing Dementia. The second half goes more into detail on what dementia care can look like as well as the political part of research associated with Alzheimer’s disease. The last 3 chapters were the hardest for me to read. What does a good life with dementia look like. And what does a good ending of life with dementia look like.

I think it is a good book. I need more details of how a dementia person looks like and how to
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Al
Jun 30, 2019 rated it it was amazing
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. ...more
Kenny Freundlich
Jul 13, 2019 rated it really liked it
An exceptionally good book. An important subject, a lot of history of the diagnosis and treatment of what we currently call dementia, and way more humor than you'd ever expect. Tia Powell even includes her own playlist (Earth Wind & Fire, Aretha, Louis Jourdan, Sonny Rollins, etc.) to soothe her if she develops dementia in future decades.

I did not expect writing this good.
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Cherie
Oct 16, 2019 rated it liked it
Shelves: 2019
Poignant, good read. Not an easy read - loads to think about, dwell upon and even get angry about. Read if you want to broaden your mind.
David  Cook
Jan 06, 2020 rated it really liked it  ·  review of another edition
Shelves: history, health, law
I saw this when I was browsing the online catalog of my local library. I thought it might be about strategies to prevent dementia. I have no family history but recently have watched two men I have known for 3 decades fall into the fog of dementia and is so heart breaking. I have joked with my boys that if this ever starts to befall me that they are to take me skiing on the best bluebird powder day right after a major dump and to look the other way when I duck the rope only to be buried in a mass ...more
Mark
Jun 17, 2019 rated it liked it
I heard an interesting interview between Terry Gross and Tia Powell on NPR, which prompted me to purchase this book. My mother has dementia, and I am always looking for books and articles which help me understand it more - specifically, when it comes to care-taking, dealing on a regular basis with a loved one who has dementia, and specific plans for care that ensure that they are safe, happy, and secure as they battle this terrible illness.

While this book has much to recommend it by way of rese
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Robbin Miller
May 27, 2019 rated it really liked it
The author pointed out the concern on how the medical community focuces on the cure and not the care for people with chronic health conditions such as dementia which is the main topic of her book. I felt that I was very familiar with this issue as persons with disabilities have been and continue to fight for "the care" and not the "cure" in how the government pours more money into the latter and not the former. I have been an advocate for 20 plus years in promoting the independent living moment ...more
Laurah Francoeur
Aug 02, 2022 rated it it was amazing
My husband was diagnosed 3 years ago with dementia after he began to lose things. He would accuse someone of stealing, even in the night. He was on medication but his symptoms progressed to anger and short fuse over little things. This was a man who was soft spoken, slow to anger and gentle. It was such a change for us to try to manage a whole new way of living. He is 67, I'm 66 and I felt so stressed sometimes. I didn’t know what each day will start with. I retired in April that year and was wi ...more
Sue
Jul 05, 2019 rated it it was amazing
Ordering this after Powell’s interview on NPR’s “Fresh Air,” I expected a more easy-reading book. It’s not, but it’s worth the effort. Powell, who has noted the trend in her family and expects to have Alzheimer’s in old age, has provided a book that everyone with any interest in the subject should read. She gives us the history of dementia diagnosis and treatment, the truth about the pharmaceutical industry’s involvement, and the nitty-gritty about the financial thrashing most people experience ...more
Lorette
Jul 20, 2019 rated it really liked it
A treatise on dementia, and in depth documentation of the history of dementia and policy implications. Here is what I am looking for and this may be individual to me: trying to get the medical community to respond quickly, completely, holistically, compassionately, and informed to those with dementia and their caregivers- this seems to be the challenge from my experience. Powell says as much but I need some specifics: the different diagnostic characteristics of the various dementias; what are th ...more
Claire
Jun 17, 2019 rated it it was amazing
This outstanding examination of the state of dementia care and end stage decisions not only reviews the historical path of treatment for dementia, the current practices and personal experience, it makes an impassioned call for compassionate and affordable care for families. With an objective eye towards the ethical concerns for all involved Dr Powell presents the case for public health action. As a professional in the elder services field for 20 years with my own personal experience parental agi ...more
Peggy McCoy
Sep 03, 2019 rated it it was amazing
I learned so much from this book! The history was fascinating, though horrifying. The scientific battle over causes and "cures" is something not widely discussed. The author is wildly optimistic about living with dementia. I hope she is successful.
I recently admitted my husband to Memory Care, he has FTD. I didn't think I could keep him safe and meet his need for social interaction. His fellow demented residents are a very interesting mix of characters, some seem happy. The economics of coping w
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Darci
Jan 27, 2020 rated it liked it
I read this hoping for something positive to hold on to since my husband is on this dementia journey. The book was a good history lesson, but there were no words of hope. It was written to those who fear they will someday be diagnosed with dementia and gave instruction on how to best prepare for the end of life. It did let me know I had helped my husband put all needed documentation in place which gave me some comfort. If you fear dementia is in your future then this book will help guide you to ...more
Charles
Jul 08, 2020 rated it liked it
Yet another book that I will be reading, gulp, to the end of my life... Or maybe not! After all, if I am afflicted by dementia, as my mother was (she passed in Oct 2016), I certainly won't be able to read up on my affliction. This book is mostly historical background on the medical treatment and social awareness of dementia, so for the "quick read", I recommend the intro chapter and chapters 11 and 12, which provide information, respectively, on how to live "well" with dementia, and how to die " ...more
Sara
Oct 18, 2020 rated it really liked it
This book is well written by a physician with sufficient details on dementia including the research and progress made in the past century, some stories of patients with dementia, and guidances on how to deal with the condition including end-of-life. She uses her family history to share some of her own experiences, which I appreciated. However, there is one big gap in my opinion- she didn’t address early onset dementia adequately as almost all stories are of patients in their seventies and higher ...more
Ash
Jul 20, 2019 rated it liked it  ·  review of another edition
I imagine for someone who is entirely new to dementia, this book would be a 4 or 5 rating. For me, someone who has been exposed to it 15+ years now and who has read what I can to he the beat caregiver I can be, it was mostly redundant. The beginning chapters are a lot of history on how diseases were labeled and treated earlier in time in America and the last few chapters but a lot of good information but things I already knew/ or already do. I was hopeful this would have some new exciting and in ...more
Kathleen
Jul 27, 2019 rated it liked it
Really this should be 2.5 stars. I heard an interview with the author and was really interesting in learning more about how to respectfully care for loved ones with Dementia - my 92-year-old grandmother suffers from it and we are always trying to do the best for her. Unfortunately, it seemed like most of this book was about the history of the disease and how expensive it is to decline in our country. I did appreciate the last 2-3 chapters, which were more focused on caregiving and a “good” death ...more
Robin R.
Jan 03, 2020 rated it liked it
While offering an outstanding history of the study of dementia, or lack there of, this book left me feeling a little let down when it came to “building a life of joy and dignity from beginning to end”. I read it looking for new ways to understand a close family member’s recent dementia diagnosis and hopefully learn some coping tools to help navigate the journey. Unfortunately, with the exception of a new understanding of 100 years of insanity vs. dementia, I finished the book wondering about the ...more
Ann
Feb 29, 2020 rated it really liked it
Getting through the beginning was a little rough, recently I have read many books about the history of dementia. I will add the rest of the book was well worth the wait by filling the pages with very insightful and valuable information. I recommend "Dementia Reimagined" to everyone who has been diagnosed with dementia, caring for someone with dementia, working in a professional capacity with the growing number of people who have been diagnosed, and to the general public. Tia Powell MD offers exc ...more
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“A doctor might say, “There’s a chance your mother could recover from her pneumonia if we put her on the breathing tube and send her to the ICU.” A chance? That sounds great! A more accurate statement might be something like this: “We could put your mother in the ICU on a breathing tube. I don’t recommend that, because she will suffer, without likely benefit. The tube is so uncomfortable she will have to be sedated, so she can’t communicate with you. She may get restrained so she doesn’t pull out the tube. If she gets through this pneumonia, she will be weaker than before, and more likely to get sick again. This pneumonia signals she is in the final phase of dementia. I recommend that you consider hospice care and a do-not-hospitalize order, focusing on comfort care without the pain and trauma of repeated transfers as she grows weaker.” A family member will have a clearer picture of how this treatment fits into the larger scenario of old age, dementia, and frailty.” 0 likes
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