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

by Tia Powell

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.

Genres: Nonfiction, Health, Medicine, Psychology, Science, History, Medical

320 pages, Kindle Edition

Published April 2, 2019

Reviews

[Keeley · Rating 5 out of 5]

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 now but was basically completely ignored in his time - probably due to racism. Dr. Powell tackles some of the difficult issues that those living with dementia and their families end up facing like is downsizing really a better option, but how can you age in place while also affording medical care while also doing what is best for the person while also acknowledging autonomy? And what happens when an older adult develops dementia and becomes violent? How do long term care facilities handle sexual relationships between older adults when one person has dementia (spoiler alert, they don't handle it well even when neither has dementia).

Dementia Reimagined very quickly jumped to the top of my "favorite books on dementia" list. I've already recommended it to everyone I work with in aging and will continue to do so until they've all read it.

Highly recommend.

[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 boomers age, and live longer, a large fraction of us will get some form of dementia. How can that best be managed both culturally and individually. Powell advocates a proactive approach - from preparing a playlist of favorite songs now to be used when dementia rears it's ugly head to thinking about what brings joy and how to do those things at a less cognitively challenging level. Do you love to read? Think about having children's books around to enjoy. Powell offers practical advice and doesn't shy away from raising the issues of sex, driving and money-handling as dementia progresses. I also appreciated her straight-forward chapter about what it's like and how to best prepare for dying from dementia. Powell offers no easy answers but much food for thought.

[Bill Hurlbut · Rating 3 out of 5]

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 African-American.

The middle portion of the book is a repetitive middle that needed more editing than it apparently received.

The last third of the book is the most useful, suggesting ways to face a diagnosis of dementia. Here Powell offers an approach that is most helpful before or early in the illness. It is less helpful for someone caring for a person with dementia, though I do find her focus on caring that seeks to ensure comfort very helpful.

Anyone who has someone close who is descending into dementia or Alzheimer’s may find bits of useful information here.

[Pam · Rating 1 out of 5]

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.

[Lynn · Rating 4 out of 5]

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 · Rating 4 out of 5]

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 currently living with dementia or Alzheimers. The details presented in this book paint an accurate portrait of our experiences. The author presents an update into Alzheimers research and an explanation for why progress towards a cure has been so slow.

I listened to the audio version of this book. The first and last chapters are read by the author, with the middle chapters read by someone else. I intensly disliked hearing the author read her book, as she way over dramatized her points. I had such a problem with this that I wondered if I could actually get through the audio version, but stuck with it because I had paid for it! Luckily, unexpected relief came when another voice took over.

The book is well written and thoughtful. Overall, I enjoyed it and would recommend it to anyone.

[Abby · Rating 4 out of 5]

i love reading books for capstone!!!

[Caroline · Rating 5 out of 5]

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 has been focused on finding a cure, and no attention has been paid to how to do better care - which is sort of a waste, because after 50 years or more of research, there is no cure and our ability to do the care is really bad. It seems that half of baby boomers will have dementia and will need care because there is no cure. Her answer to this is to stop pouring billions into searching for a cure and put some resources toward improving care, because care is what's going to be needed for millions and millions of people now and over the next 20 years. Public policy's institutions-yes/institutions-no shlllyshally has been based entirely on the need to reduce what's spent on this problem - as is everything in the United States, it seems - everyone wants everything including good care for themselves, but nobody wants to give any money toward it.
She is particularly clear and eloquent on the situations of the people she profiles, and the difficult flex point when they are no longer safe at home either for themselves or for the people around them. She is not starry-eyed about the aging-in-place concept - she totally agrees that a nursing home is the best place for a lot of people, and makes it clear that nursing homes have improved by orders of magnitude in the past 40 years. She finally spends some pages thinking about what proper dementia care should look like - what caregivers and institutions should strive for and what they should not waste time on - and what she wants when she is ready to receive such care. She makes the point that some people are much better in a good institutional setting, because there is activity and society and other people.
Because my mother refused to leave her home until she reached the point of not being able to stay there, she was basically completely alone for 12 years after my father died, and this was fine with her as she didn't like people. This is deadly for the human brain. I don't want to travel that road myself when, as is likely, this illness comes upon me. I hope I know the right time to move even though I love my house, and I do like people... Like the woman said, whom I saw on TV, who is 92 and holds the senior record for various track running distances, JUST KEEP MOVING.

[Bookewyfe · Rating 4 out of 5]

I have been trying to read as much as I can about neurological conditions such as Alzheimer’s and Dementia. Volunteering in Hospice, and working a for few months in home health has taught me a lot. My father and step-mom both have Alzheimer’s, so these books are very helpful but it’s still hard. This book discusses some history of mental illness and its institutions, and stories of loved ones who have had these diseases. It discusses the problems with funding, visibility and compassion. It also discusses the ongoing search for a cure.

The author lays out her own plans should this happen to her, as it did her mother. Unfortunately, as of now, there is no medically assisted death available for Alzheimer’s and Dementia, given the requirements the diseases fail to meet along timelines and cognition. For me, that is what I would want; just to check out and call it a night, by any means within my availability. I don’t want to exist as a shell, the real me being lost forever. If you are looking for a book about caregiving, this isn’t it, though it is educational and worth reading.

[Evelyn · Rating 4 out of 5]

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. Take a walk. Spend time with those you love. Sing. Eat fruits. Pick up a new skill or hobby. There is no guarantee these things will slow dementia’s onset, but they are as good a bet as any. No matter what, they may increase your store of happiness along the way.“

The final chapter is definitely worth reading more than once!

[Dan Ream · Rating 5 out of 5]

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 · Rating 3 out of 5]

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 · Rating 4 out of 5]

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 · Rating 4 out of 5]

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 deal with it. She did give me some resources for future reading.

[Al · Rating 5 out of 5]

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.
This is a must read for those caring for people with dementia. Another excellent read is The 36 Hour Day.

[Darci · Rating 3 out of 5]

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 be organized. If you are supporting a loved one that is years into the journey, save yourself the sorrow of reading.

[Kathleen · Rating 3 out of 5]

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. I just wish there had been the main focus.

[Kenny Freundlich · Rating 4 out of 5]

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.

[Cherie · Rating 3 out of 5]

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 · Rating 4 out of 5]

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 massive avalanche. At least I will end very happy. I'm only half kidding of course.

The book has little to do with prevention, since at this time there is no prevention available, but with strategies for families to deal with the challenges. Tina Powell recounts her medical school years studying brain pathology, a field that has changed over the years. Though definitive disease cure does not exist at present, the author's illuminating history of Alzheimer’s disease and its legacy of treatments and policies is fascinating. She 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 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 care-giving 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 (see quote below). 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.

Quote:

“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.”

[Theresa · Rating 5 out of 5]

I listened to this book after returning from a trip to visit my mother, who is living with dementia and declining rapidly. I wanted to learn more about this brain illness as well as how I might help her.

The first section of the book, the longest, summarizes the ways society has seen dementia over the centuries, what the presumed causes have been, what we know now about the causes and the possibility of treatment. Discouragingly, author Tia Powell reports that anyone who is already at least 50 years old is unlikely to see a cure for dementia in our lifetimes. Medicine is not even close to being able to stop the disease.

This leads her to consider how we ought best to work with individuals who have or will develop dementia. It's a very personal question for Powell, whose mother and grandmother both developed dementia; she expects she is likely to develop it as well. She argues that we need to focus on quality of life issues: what things bring pleasure and comfort to patients? What living situations serve them well? The answers are not the same for each person, so it's worth considering the interests and life history of the person.

Powell is already thinking ahead to a time when her own mind might not work the way it does now. She has made a playlist of her favorite songs, because she knows how much music means to people with dementia. She has written down the pleasure she takes from walks and family and asked her family to give her as many positive experiences as possible.

This book has very much shaped my approach to thinking about my mother's illness. I can imagine that if she had terminal cancer, I would want to ensure we minimized her pain and maximized her opportunity to enjoy time with people and experiences that bring her joy. Instead, she has dementia. I would like to minimize the anxiety and outright fear she is experiencing, while taking her for many walks outdoors, playing music for her and encouraging her to play the piano, and giving her opportunities to interact with her children and with animals. I see how her face lights up with such experiences, and her tense body relaxes. She deserves to have more of that.

[Mikayla Ruggles · Rating 4 out of 5]

My grandmother has been diagnosed with dementia for about two and a half years now. About 8 months ago my grandfather, her husband, had a stroke and was shortly after also diagnosed with dementia. Much has happened in that time, but my immediate family has gone through a lot, attempting to determine what is best for them in this new, and final, stage of life. I work at a public library and, while shelving some other non-fiction books, this caught my eye because the topic is very fresh to my mind. I had not done any research into "good dementia books" or whether or not Mrs. Powell was someone learned on the topic, but I can say that I feel both of those things are true. Though this book took me a while to read, I am a slow reader, especially non-fiction, it was full of really thoughtful insight as well as facts and information that helped me to learn so much about an elusive and tough topic. My grandparents were the inspiration to pick this up, and I can see implementing some of her knowledge to their current stage, but more than that it ended up being something I think was really important, for my future self, to read. Mrs. Powell's approach gave me information I would have never known I should have and a perspective that I suspect is not all that common in the world of dementia and geriatrics at this time. Whether it's my mom, myself, my siblings, or my future husband who ends up with the reality of a dementia diagnosis I feel just a little bit more prepared and courageous in the face of it. Very much worth the read, whether dementia is currently in your life or not. More than likely, it eventually will be.

[Mark · Rating 3 out of 5]

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 research - and I found I really enjoyed Powell's very warm and knowledgeable "voice" throughout - it doesn't offer much of what I was seeking out, sadly. The subtitle - "Building a Life of Joy and Dignity from Beginning to End" is really quite a bit of a misnomer. A majority of the book traces the gradual discovery of dementia as a mental illness in the shadow of Alzheimer's (which frequently seems to garner more PR/publicity, etc.), and includes the results and comparisons of various scientific tests to root out the causes of dementia and its differences from Alzheimer's. While I understand the importance of this information, it just didn't interest me, especially "where I am at" right now with the escalating condition of my mother's disease. I'm sad that it didn't appeal to me on the whole, or offer me any new answers I was so anxiously seeking, as I bought a copy of this book and am not likely to consult it again. It's well-written, but not particularly insightful when it comes to tips for care-taking and helping your loved one living with dementia.

[Robbin Miller · Rating 4 out of 5]

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 for individuals with disabilities. It was predicted by advocates that this movement would affect the baby boomers as they aged and/or have been diagnosed with dementia.

It was nice to see the author promote the need for the "care" and not the "cure" as it is true that the current medications to cure dementia are ineffective.

I liked the way the author stated on how she would want things to be for her when and if she gets dementia later in life. I agree that having activities that promote emotions with memory are more effective than having cognitive tasks in nursing homes for people with dementia.

I would recommend that using language that says "people with disabilies" and not "disabled people" is the proper way to address this community.

[Laurah Francoeur · Rating 5 out of 5]

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 with him 24/7. I have been researching for a while now, and I think this has helped. Have you ever come across Health herbs clinic Dementia HERBAL FORMULA (just google it). It is a smashing one of a kind product for reversing Dementia completely.4 months into treatment he has improved dramatically. the disease is totally under control. No case of dementia, particularly the hallucination, weakness, and his mood swings. visit their website healthherbsclinic .com I Just wanted to share for people suffering from this horrible disease

[Sue · Rating 5 out of 5]

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 with this and all forms of dementia. She tells us about the progression of the disease and what it’s really like, both for the patient and the caregiver, and suggests ways to keep living a good life for as long as possible. She writes at length about the most taboo topic, that this is a fatal disease and we have choices to make about how we want to go. I hope Powell never experiences dementia, but she is ready if she does. Highly recommended.

[Lorette · Rating 4 out of 5]

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 the hallmarks for assisted living, driving, etc., what is the typical course or progression, what recommendations do we need from doctors?

And I think it needs to be said: SO MUCH of caregiving falls on women, with substantial outcomes: diminished savings and earnings from scaling back on work duties, trying to balance family needs, the disjointed nature of medical intervention (do I need to go to 8 appointments in a month? Is there a better way?).

There is a lot to say and much unsaid.

[Liz · Rating 2 out of 5]

UK readers: see https://www.protectstudy.org.uk/ if you’re interested in taking part in dementia research.
This was a very American book E.g. the talk of how care is funded wasn’t relevant to me. That said, I was interested to read that America had come up with the idea of what we here call ‘Care in the Community’ in the 1960s and it hadn’t seemed to work there (fraud, underestimation of costs, little community support etc.) so I wonder why the UK government expected it to work here.
I skipped a lot of the discussions on the drug trials because these became repetitive, so I only became really interested when the book discussed case studies, then talked about what problems demented people have and how they could be solved. This part was good though I learnt very little. I found ’Contented Dementia’ by Oliver James more useful when coping with my father.

[Claire · Rating 5 out of 5]

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 aging, I am heartened to read this call for joy and dignity for our elders. Delivering care with no cure in sight should not be relegated to lowest rung of medical and public attention.

[Peggy McCoy · Rating 5 out of 5]

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 with this disease are overwhelming; just today, 2 residents were moving home because their long term care insurance has run out.