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The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It
Part case studies, part meditation on the past, present and future of the disease, The Problem of Alzheimer's traces Alzheimer’s from its beginnings to its recognition as a crisis. While it is an account of decades of missed opportunities and our health care systems’ failures to take action, it tells the story of the biomedical breakthroughs that may allow Alzheimer’s to finally be prevented and treated by medicine and also presents an argument for how we can live with dementia: the ways patients can reclaim their autonomy and redefine their sense of self, how families can support their loved ones, and the innovative reforms we can make as a society that would give caregivers and patients better quality of life.
The Problem of Alzheimer's takes us inside laboratories, patients' homes, caregivers’ support groups, progressive care communities, and Jason Karlawish's own practice at the Penn Memory Center.
The Problem of Alzheimer's takes us inside laboratories, patients' homes, caregivers’ support groups, progressive care communities, and Jason Karlawish's own practice at the Penn Memory Center.
336 pages, Hardcover
First published February 23, 2021
144 people are currently reading
2254 people want to read
About the author
Jason Karlawish
6 books22 followersJason Karlawish is a Professor of Medicine and Medical Ethics at the University of Pennsylvania. He studied medicine at Northwestern University and trained in internal medicine and geriatric medicine at Johns Hopkins University and the University of Chicago.
He cares for patients at the Penn Memory Center. His research focuses on issues in bioethics. With support from the National Institutes of Health, the Robert Wood Johnson Foundation and the Greenwall Foundation, he has investigated the development of Alzheimer’s disease treatments and diagnostics, informed consent, quality of life, research and treatment decision making, and voting by persons with cognitive impairment and residents of long term care facilities. He has been an international proponent of mobile polling, a method of bringing the vote to long term care facilities that minimizes fraud and maximizes voter rights. He is a winner of the Lancet's Wakley Prize. In 2010, in a widely publicized essay in the Journal of the American Medical Association, he introduced the concept of “desktop medicine,” a theory of medicine that recognizes how risk and its numerical representations are transforming medicine, medical care, and health.
Karlawish wrote Open Wound: The Tragic Obsession of Dr. William Beaumont in part to upend the convention of the scientist as a dispassionate expert who lives above the social and political order of her times. Open Wound, a novel based on true events along the 19th century American frontier, tells how emotion and passion together with social and political pressures slowly corrupt the scientist’s character and ethics, a corruption that drives Dr. Beaumont to increasingly desperate acts. Tragically, he destroys what he most desires, the immortality of fame.
Karlawish has disseminated his work in peer reviewed publications and chapters in leading textbooks of medicine and bioethics, testimony to the Senate Select Committee on Aging and the Department of Health and Human Services Subcommittee on the Inclusion of Individuals with Impaired Decision-making in Research, and collaborations with the American Bar Association, American Association of Retired Persons, the Department of Housing and Urban Development, the State of Vermont, the U.S. Election Assistance Commission, and the U.S. Government Accountability Office. He is a member of the Board of Directors of the Greenwall Foundation.
He cares for patients at the Penn Memory Center. His research focuses on issues in bioethics. With support from the National Institutes of Health, the Robert Wood Johnson Foundation and the Greenwall Foundation, he has investigated the development of Alzheimer’s disease treatments and diagnostics, informed consent, quality of life, research and treatment decision making, and voting by persons with cognitive impairment and residents of long term care facilities. He has been an international proponent of mobile polling, a method of bringing the vote to long term care facilities that minimizes fraud and maximizes voter rights. He is a winner of the Lancet's Wakley Prize. In 2010, in a widely publicized essay in the Journal of the American Medical Association, he introduced the concept of “desktop medicine,” a theory of medicine that recognizes how risk and its numerical representations are transforming medicine, medical care, and health.
Karlawish wrote Open Wound: The Tragic Obsession of Dr. William Beaumont in part to upend the convention of the scientist as a dispassionate expert who lives above the social and political order of her times. Open Wound, a novel based on true events along the 19th century American frontier, tells how emotion and passion together with social and political pressures slowly corrupt the scientist’s character and ethics, a corruption that drives Dr. Beaumont to increasingly desperate acts. Tragically, he destroys what he most desires, the immortality of fame.
Karlawish has disseminated his work in peer reviewed publications and chapters in leading textbooks of medicine and bioethics, testimony to the Senate Select Committee on Aging and the Department of Health and Human Services Subcommittee on the Inclusion of Individuals with Impaired Decision-making in Research, and collaborations with the American Bar Association, American Association of Retired Persons, the Department of Housing and Urban Development, the State of Vermont, the U.S. Election Assistance Commission, and the U.S. Government Accountability Office. He is a member of the Board of Directors of the Greenwall Foundation.
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Displaying 1 - 30 of 78 reviews
October 28, 2021
Quite simply, this is the best book about Alzheimer's disease I have read, and I have read most of them. I am a retired neurologist with early-stage Alzheimer's disease, so I have experience with the disease from two points of view: a neurologist who cared for many patients with Alzheimer's during my career and now a person living with early Alzheimer's. I have written about my experiences in a memoir (with Teresa Barker) called A Tattoo on my Brain: A Neurologist's Personal Battle against Alzheimer's Disease, but I am afraid my book does not compare to the tour de force of Dr. Karlawish. His book is comprehensive yet accessible, covering the history, politics, and controversies surrounding the disease. It is thorough and it is compassionate. I recommend it to anyone who wants to understand this disease.
June 7, 2021
In the past 30 years, it seems to me that Alzheimer's disease has overtaken cancer as the most-feared disease in the modern world. In this excellent book, Jason Karlawish, an Alzheimer's specialist, explains how Alzheimer's disease, first described over a century ago, has become such a threat. Although Alzheimer's right now seems much more challenging to diagnose and treat than does cancer, Karlawish has some suggestions for future approaches, if we can bring enough resources to bear.
The book is divided into four main parts. Part one deals mainly with the diagnosis of Alzheimer's disease. Until relatively recently, Alzheimer's could only be diagnosed after the patient's death, by examining slices of the person's brain under a microscope for abnormalities called "plaques" and "tangles". Now, scientists have found ways to see plaques in living brains using MRI machines, but their techniques are expensive and require very specialized equipment.
Part two of the book deals with the history of Alzheimer's. Plaques and tangles were first described by Alois Alzheimer in Germany in 1906. Two world wars and Germany's reputation interrupted and cast doubt on the credibility of the work of many German researchers, Alzheimer among them. His papers and reports were unread for decades. In the post-war years, however, as the population grew and began living longer, the once-rare Alzheimer's disease began showing up more frequently. It also became clear that Alzheimer's was a real disease, a disorder of the brain, and not simply something to be expected as one aged. By the late 1970s and early 1980s, doctors were beginning to sound the alarm about it, and relatives of Alzheimer's sufferers were beginning to organize into mutual support groups, which eventually merged to become the Alzheimer's Association.
Part three looks at treatment options. There have been many attempts to develop medications that can treat or prevent Alzheimer's, but no drug has been effective enough to warrant widespread use. So if we can't treat the disease, how do we best care for those with Alzheimer's? This is one of the most interesting sections. Karlawish looks at various forms of care and support options and explains why the U.S. medical system does not fund personal care. He makes a strong case for what he calls "social insurance", where we all contribute to a fund that would provide for Alzheimer's patients as their disease progresses and as they need increasingly intensive levels of around-the-clock care.
The book's final part examines some of the ethical issues around Alzheimer's and each person's rights to dignity and respect. Caregivers or doctors will eventually have to make decisions on a patient's behalf, and we need to have strong guidelines around how these decisions are made and how the patient's wishes, if we can tell what those wishes are, are to be respected.
There is some good news in the book. Overall, it appears that the incidence of all types of dementia, including Alzheimer's, is declining. It is thought that improved health care, particularly early in life, is leading to healthier, older brains. At the level of government funding agencies, at least in the U.S., there seems to be a growing awareness that Alzheimer's deserves special attention, as cancer and heart disease do.
Karlawish writes well, enlivening his points with personal anecdotes from his own clinical experience and from the many doctors and scientists he's worked with.
Alzheimer's is frightening because it robs us of what makes us ourselves: our minds. Karlawish isn't guaranteeing any solutions to the problem of Alzheimer's, but he is offering some avenues to explore in detection, diagnosis, treatment, and care. We need only the government support and social will to take them.
The book is divided into four main parts. Part one deals mainly with the diagnosis of Alzheimer's disease. Until relatively recently, Alzheimer's could only be diagnosed after the patient's death, by examining slices of the person's brain under a microscope for abnormalities called "plaques" and "tangles". Now, scientists have found ways to see plaques in living brains using MRI machines, but their techniques are expensive and require very specialized equipment.
Part two of the book deals with the history of Alzheimer's. Plaques and tangles were first described by Alois Alzheimer in Germany in 1906. Two world wars and Germany's reputation interrupted and cast doubt on the credibility of the work of many German researchers, Alzheimer among them. His papers and reports were unread for decades. In the post-war years, however, as the population grew and began living longer, the once-rare Alzheimer's disease began showing up more frequently. It also became clear that Alzheimer's was a real disease, a disorder of the brain, and not simply something to be expected as one aged. By the late 1970s and early 1980s, doctors were beginning to sound the alarm about it, and relatives of Alzheimer's sufferers were beginning to organize into mutual support groups, which eventually merged to become the Alzheimer's Association.
Part three looks at treatment options. There have been many attempts to develop medications that can treat or prevent Alzheimer's, but no drug has been effective enough to warrant widespread use. So if we can't treat the disease, how do we best care for those with Alzheimer's? This is one of the most interesting sections. Karlawish looks at various forms of care and support options and explains why the U.S. medical system does not fund personal care. He makes a strong case for what he calls "social insurance", where we all contribute to a fund that would provide for Alzheimer's patients as their disease progresses and as they need increasingly intensive levels of around-the-clock care.
The book's final part examines some of the ethical issues around Alzheimer's and each person's rights to dignity and respect. Caregivers or doctors will eventually have to make decisions on a patient's behalf, and we need to have strong guidelines around how these decisions are made and how the patient's wishes, if we can tell what those wishes are, are to be respected.
There is some good news in the book. Overall, it appears that the incidence of all types of dementia, including Alzheimer's, is declining. It is thought that improved health care, particularly early in life, is leading to healthier, older brains. At the level of government funding agencies, at least in the U.S., there seems to be a growing awareness that Alzheimer's deserves special attention, as cancer and heart disease do.
Karlawish writes well, enlivening his points with personal anecdotes from his own clinical experience and from the many doctors and scientists he's worked with.
Alzheimer's is frightening because it robs us of what makes us ourselves: our minds. Karlawish isn't guaranteeing any solutions to the problem of Alzheimer's, but he is offering some avenues to explore in detection, diagnosis, treatment, and care. We need only the government support and social will to take them.
April 30, 2021
The Problem of Alzheimer's~~
The title should've told me the 2020 book wasn't a happy one about solutions to Alzheimer's Disease. The Problem of Alzheimer's explains in rather horrific detail how the brain disease was discovered and, well, recognized, in the midst of last century. It's been mistaken for senility caused by aging and denied or ignored. U.S. Presidents, starting with George H.W. Bush, defunded the project to find a cure for tt until Barack Obama took it up.
It's a heavy book filled with doctors who learned how to diagnose it, but not how to treat it or even how to describe what their families as caregivers could do to help their loved ones.
This disease keeps killing more and more people around the world, but the book focuses on the U..S. Response, or lack thereof. My adoptive mother suffered and died from it. I saw her struggle to speak, then remember simple words and how to play a game we always enjoyed. You would think my older brother would've included her many framed jigsaw puzzles at her funeral. They were beautiful and the last creative thing she did before the disease, triggered by mini-strokes, took over. But no.
The one hopeful note I found in the book is that AD is detected earlier so treatment can be started earlier, but I didn't read of how omega-3 fatty acids should be taken. Only that head injuries, mini-strokes, and syphilis can cause it, as well as the beta amyloid plaques and tau tangles.
Today I signed up for a free, twelve-day video series about working doctors treating their AD patients with natural, integrative solutions. I'll let you know about it or sign up yourself from the post on my Facebook page. I think people living with the tragedy, especially the caregivers, will want to trudge through this depressing book.
The title should've told me the 2020 book wasn't a happy one about solutions to Alzheimer's Disease. The Problem of Alzheimer's explains in rather horrific detail how the brain disease was discovered and, well, recognized, in the midst of last century. It's been mistaken for senility caused by aging and denied or ignored. U.S. Presidents, starting with George H.W. Bush, defunded the project to find a cure for tt until Barack Obama took it up.
It's a heavy book filled with doctors who learned how to diagnose it, but not how to treat it or even how to describe what their families as caregivers could do to help their loved ones.
This disease keeps killing more and more people around the world, but the book focuses on the U..S. Response, or lack thereof. My adoptive mother suffered and died from it. I saw her struggle to speak, then remember simple words and how to play a game we always enjoyed. You would think my older brother would've included her many framed jigsaw puzzles at her funeral. They were beautiful and the last creative thing she did before the disease, triggered by mini-strokes, took over. But no.
The one hopeful note I found in the book is that AD is detected earlier so treatment can be started earlier, but I didn't read of how omega-3 fatty acids should be taken. Only that head injuries, mini-strokes, and syphilis can cause it, as well as the beta amyloid plaques and tau tangles.
Today I signed up for a free, twelve-day video series about working doctors treating their AD patients with natural, integrative solutions. I'll let you know about it or sign up yourself from the post on my Facebook page. I think people living with the tragedy, especially the caregivers, will want to trudge through this depressing book.
August 18, 2021
Fairly comprehensive and well-researched book on Alzheimers. Informative, but a bit depressing.
August 6, 2022
Soooo much to unpack here but these are the main points:
1. I really enjoyed learning about the history of Alzheimer’s and dementia diagnoses, this was something that I never learned in nursing school but probably would have been useful to know
2. There needs to be a full upheaval in the way we care for Alzheimer’s patients and caregivers. The facilities we have right now just aren’t cutting it
3. I wish I could do better for my patients with Alzheimer’s and dementia
4. I listened to the audiobook version of the book and in the last chapter it was a different narrator and that was really annoying 😂
1. I really enjoyed learning about the history of Alzheimer’s and dementia diagnoses, this was something that I never learned in nursing school but probably would have been useful to know
2. There needs to be a full upheaval in the way we care for Alzheimer’s patients and caregivers. The facilities we have right now just aren’t cutting it
3. I wish I could do better for my patients with Alzheimer’s and dementia
4. I listened to the audiobook version of the book and in the last chapter it was a different narrator and that was really annoying 😂
March 6, 2021
A very detailed and informative book on the history of Alzheimer's disease, with disappointingly few takeaways for moving forward. The book opens with the modern history of Alzheimer's starting in the 1980s up through around 2013, as the medical establishment begins to reassess Alzheimer's as a major cause of senile dementia and begins to make some breakthroughs for diagnosing the disease while a patient is still alive. Then, though, it takes a curious detour back to Alois Alzheimer himself and the earliest history of the disease (and its subsequent fall out of the spotlight). The book's narrative momentum suffers here. It seems like it would have made more sense to tell the history of Alzheimer's treatments linearly; as it is, the first part is a story of scientific progress and achievement (with setbacks, both medical and political, along the way), and then the second part feels like a storyteller pausing in the middle of the action to give an exhaustive backstory of a minor character. Yes, Alois Alzheimer and his contemporaries were major figures in the initial descriptions of the disease that bears his name. But the first part of the book already established that the disease was not a major target of study or medical attention and understanding, and by that point we don't really need to know exactly why. I found myself impatiently skimming sections talking about economic conditions in inter-war Germany, anxious to get back to the more interesting stuff about ongoing breakthroughs in Alzheimer's care.
Unfortunately, the book doesn't really have that much to offer on that front either, in the end. Part of that is just a terrible byproduct of Alzheimer's research at this time. It's not cured; there's no magical treatment; this is not a story of how we "beat" a disease, and there's not going to be a triumphant climax. But I was hoping for some more concrete good news on either a therapeutic strategy for Alzheimer's writ large or actionable advice for dealing with Alzheimer's disease in loved ones or in yourself. Maybe I expected too much of the book, but my expectations were a little disappointed.
If you want to know, in sometimes overly-exhaustive detail, the history of Alzheimer's and the medical techniques used to diagnose it (if not exactly treat it, yet), then read this book. It certainly provides that in spades, and has a good amount of thought-provoking and interesting asides (such as the discussion of whether to follow a pre-Alzheimer's person's living will or trust the person that occasionally surfaces from the dementia, even when their wishes disagree, or the anecdotes about different methods that have been used to alleviate people's disorientation). Just, maybe read Part 2 before Part 1.
Unfortunately, the book doesn't really have that much to offer on that front either, in the end. Part of that is just a terrible byproduct of Alzheimer's research at this time. It's not cured; there's no magical treatment; this is not a story of how we "beat" a disease, and there's not going to be a triumphant climax. But I was hoping for some more concrete good news on either a therapeutic strategy for Alzheimer's writ large or actionable advice for dealing with Alzheimer's disease in loved ones or in yourself. Maybe I expected too much of the book, but my expectations were a little disappointed.
If you want to know, in sometimes overly-exhaustive detail, the history of Alzheimer's and the medical techniques used to diagnose it (if not exactly treat it, yet), then read this book. It certainly provides that in spades, and has a good amount of thought-provoking and interesting asides (such as the discussion of whether to follow a pre-Alzheimer's person's living will or trust the person that occasionally surfaces from the dementia, even when their wishes disagree, or the anecdotes about different methods that have been used to alleviate people's disorientation). Just, maybe read Part 2 before Part 1.
May 13, 2021
As a physician and also a caregiver for my two parents who both have Alzheimer’s disease, I picked up this book hoping to learn some practical things about the disease. It was eery how many of the stories mirrored our family’s story. While many may find the detailed history of the disease more than they care to ascertain-I read from the perspective of both a physician and a caregiver and soaked it all in. I appreciated the focus on the caregiver and I rejoiced to hear an expert remark about the lack of attention from the healthcare system given to ‘living’ with Alzheimer’s. The book doesn’t try to provide all the answers, but paints an incredibly vivid picture of the desperate, disconnected landscape of cognitive dysfunction in our healthcare system and culture, overall. I think every healthcare administrator should read this book!
March 17, 2021
"The Problem of Alzheimer's" is the first book I have finished reading in 2021, and I have to say I started this year off right. It was a shock that this was the first book as I am not someone who reads medical-based non-fiction often. I don't remember what I expected it to be – maybe more slow-paced with that typical all-knowing doctor tone. However, the book is a real story - a compelling and comprehensive one that works to untangle a modern-day medical crisis.
Karlawish is an intelligent individual who has personal and professional knowledge, but he doesn't overplay his words. He talks straight. His openness and honesty are rarely seen in the non-fiction genre.
I don't think there's anyone who wouldn't benefit from reading this book.
Karlawish is an intelligent individual who has personal and professional knowledge, but he doesn't overplay his words. He talks straight. His openness and honesty are rarely seen in the non-fiction genre.
I don't think there's anyone who wouldn't benefit from reading this book.
November 9, 2021
I read this hoping to have a better grasp on this disease, what it was what causes it and ways to treat it. Hoping it would tell me advances and advice.
It did, but in the most round about and convoluted way. I wanted to read this like a book a chapter at a time. But the organization was so confusing.
This book is part science, and though the order is confusing, I do feel a better grasp on the disease and it’s causes and the state of treatment
But it spends a lot of time with political motivations that are entirely for the Democratic Party.
It did, but in the most round about and convoluted way. I wanted to read this like a book a chapter at a time. But the organization was so confusing.
This book is part science, and though the order is confusing, I do feel a better grasp on the disease and it’s causes and the state of treatment
But it spends a lot of time with political motivations that are entirely for the Democratic Party.
September 15, 2023
I received this book in exchange for an honest review.
The Problem of Alzheimer’s by Dr. Karlawish is a great read for anyone interested in the history and development of the diagnosis of Alzheimer’s disease. Dr. Karlawish has the gifted ability to make a historical recount sound suspenseful. Something I really appreciated about this book was the frequent examples of real patients to keep the reader invested and to explain the author’s main points. This book was very well organized with fluid transitions, and it offered a nice balance between fact and commentary.
Overall, the book is written for a general audience, but some knowledge on this topic will be helpful when reading, as this is a very scientific and political piece by nature. That being said, the author does a nice job explaining some key terms, and the book is rather comprehensive. Even if the reader has no background knowledge, they will still be able to follow the storyline as it has a very easy-to-follow narrative voice.
Overall, definitely recommend this read to anyone looking to learn more about what living with Alzheimer’s disease—both as a patient and caregiver—looks like. Thank you, Dr. Karlawish, for the opportunity to read and share my thoughts on your book.
The Problem of Alzheimer’s by Dr. Karlawish is a great read for anyone interested in the history and development of the diagnosis of Alzheimer’s disease. Dr. Karlawish has the gifted ability to make a historical recount sound suspenseful. Something I really appreciated about this book was the frequent examples of real patients to keep the reader invested and to explain the author’s main points. This book was very well organized with fluid transitions, and it offered a nice balance between fact and commentary.
Overall, the book is written for a general audience, but some knowledge on this topic will be helpful when reading, as this is a very scientific and political piece by nature. That being said, the author does a nice job explaining some key terms, and the book is rather comprehensive. Even if the reader has no background knowledge, they will still be able to follow the storyline as it has a very easy-to-follow narrative voice.
Overall, definitely recommend this read to anyone looking to learn more about what living with Alzheimer’s disease—both as a patient and caregiver—looks like. Thank you, Dr. Karlawish, for the opportunity to read and share my thoughts on your book.
January 4, 2022
Excellent source of the story of Alzheimer’s disease. This book covers so much political, biological, and psychological information it is almost overwhelming. To have all this information in one volume is helpful yet I almost felt like it should’ve divided into several volumes and more information covered in each topic. I have always felt that individuals with Alzheimer’s disease are still themselves inside only limited most of the time to function as they had. The final chapter in my mind confirms this and a continued need to find treatment options and quality loving care till the end is greatly needed.
June 23, 2024
This one had everything!!
- Mike Weiner (!)
- ADNI politics 😈
- ADNI’s limitations (WACK sample??)
- The politicization of AD
- Anti-socialism / red scare and conservatives in medicine 1%’d the NIH budget stifling research for decades
- Definition of AD controversy 😈
- Lisa Barnes !!!
- Discrimination causes cognitive decline !
- Anti-AD robot agenda
- People are scared of dementia mostly because of the way we treat old people
- Ethics of dementia care
Get Torke/Fowler to introduce me to this dude
- Mike Weiner (!)
- ADNI politics 😈
- ADNI’s limitations (WACK sample??)
- The politicization of AD
- Anti-socialism / red scare and conservatives in medicine 1%’d the NIH budget stifling research for decades
- Definition of AD controversy 😈
- Lisa Barnes !!!
- Discrimination causes cognitive decline !
- Anti-AD robot agenda
- People are scared of dementia mostly because of the way we treat old people
- Ethics of dementia care
Get Torke/Fowler to introduce me to this dude
October 25, 2023
The Problem of Alzheimer's is a comprehensive and empathetic exploration of the disease's history, political challenges, and scientific progress, offering valuable insights for a wide range of readers.
Alzheimer’s disease poses a major challenge to modern medicine and healthcare fields. Despite substantial efforts and resources invested in finding effective treatments, there is still no cure in sight. This has created an urgent situation for both the medical community and society as a whole, affecting many individuals and families.
In response to this urgent issue, this review examines a compelling book that tackles the puzzle of Alzheimer’s disease head-on. The book in question, titled The Problem of Alzheimer’s, takes a deep dive into this crisis, providing readers with an insightful and empathetic exploration of a disease that has long resisted a definitive solution.
Author’s background
Jason Karlawish is a medical practitioner and author who specialises in exploring subjects that bridge the fields of bioethics, ageing, and neuroscience.
He is the author of the book Open Wound: The Tragic Obsession of Dr. William Beaumont, and his articles have been featured in publications such as The New York Times, The Washington Post, Forbes, and the Philadelphia Inquirer. Additionally, he holds the position of Professor in Medicine, Medical Ethics and Health Policy, as well as Neurology, at the University of Pennsylvania.
What is the book about?
The Problem of Alzheimer’s by Jason Karlawish is a thought-provoking book that delves into the multifaceted challenges posed by Alzheimer’s disease. The book is structured into four parts, each addressing a distinct aspect of this pressing issue, including:
• Challenges in translating diagnoses to patients and families
• Healthcare system implications
• The 20th century perspective on Alzheimer’s
• Tragedy of concealment and lack of treatment
• Opportunities to address the Alzheimer’s crisis
• Scientific advances in Alzheimer’s care
• Early diagnosis and treatment breakthroughs
Overall, The Problem of Alzheimer’s challenges readers to understand the disease’s complex history, the potential for medical advancements, and the necessity of a broader societal response to tackle Alzheimer’s disease effectively. It sheds light on the far-reaching impact of the condition and calls for a concerted effort to address this pressing issue.
Three key takeaways from The Problem of Alzheimer’s
1. Alzheimer’s disease prevalence and recognition
The book sheds light on how Alzheimer’s disease transitioned from being a seemingly rare condition to a widespread crisis. Part of this shift is attributed to an increase in cases due to longer lifespans, as people used to succumb to other diseases before developing Alzheimer’s. Additionally, for a long time, Alzheimer’s was not recognised as a distinct disease; instead, it was dismissed as senility or old age. The breakthrough made by Dr. Alois Alzheimer in identifying physical brain abnormalities associated with the disease was a pivotal moment in acknowledging it as a legitimate medical condition.
2. Politics and funding challenges
Politics played a significant role in the Alzheimer’s crisis. Despite the rise of Alzheimer’s associations to raise awareness and advocate for research funding, there were political hurdles. Congress traditionally allocated funds for medical research but resisted addressing ‘diseases of the month.’ Additionally, the post-Cold War era in the United States saw opposition to anything that resembled socialism, including comprehensive long-term care for Alzheimer’s patients. This lack of political will left families grappling with the financial burdens of Alzheimer’s care.
3. Alzheimer’s treatment challenges
Alzheimer’s has proven resistant to a quick-fix treatment, and the book discusses the history of scientific efforts to combat the disease. Researchers discovered amyloid and developed brain scans to detect it, explored genetic testing, and pursued immunotherapy drugs, but these developments led to mixed results and, in some cases, disappointment. While some drugs provide limited relief, there is still no cure. The book suggests that living well with Alzheimer’s largely involves supportive care, focusing on safety and engagement, including technologies to locate wandering individuals and creating opportunities for socialisation and stimulation.
Strengths and weaknesses, according to readers’ reviews
Strengths:
• Provides a thorough yet accessible exploration of Alzheimer’s disease, making it a valuable resource for readers of all backgrounds.
• Approaches Alzheimer’s with empathy, considering the experiences of both patients and caregivers, particularly addressing the challenges caregivers face.
• Effectively exposes the healthcare system’s shortcomings in Alzheimer’s care, sparking discussions about the need for improvements in patient support.
Weaknesses:
• The book’s structure and organisation are convoluted, making it difficult for readers to follow the content as intended, hindering the learning experience.
Best quotes from The Problem of Alzheimer’s
“The lack of sustained and steady access to these resources was one reason why Alzheimer’s disease remained stuck as the unusual disease of the cerebral cortex that he presented after lunch at the 1906 meeting in Tübingen. Other factors were at work as well. One of them was present the very afternoon after Alzheimer stepped away from the lectern: Sigmund Freud’s psychodynamic theory of mental illness.”
“There are very few of these doctors or other health care professionals committed to diagnose and treat persons with mild cognitive impairment or dementia. The reasons why include the stigma of dementia (laypeople often lean away from me when I tell them what I do). They also include the nature of the doctoring. Diagnosis is interesting. Treatment is satisfying. Alzheimer’s disease doctors however don’t have the armamentarium of treatments that cardiologists and oncologists have. Which leads to the crux of the problem: money.”
Final takeaway
The Problem of Alzheimer’s by Jason Karlawish offers a comprehensive and compassionate exploration of Alzheimer’s disease. Karlawish’s unique perspective as a medical practitioner and his empathetic approach to both patients and caregivers add depth to the narrative. The book effectively highlights the shortcomings of the healthcare system in Alzheimer’s care, igniting discussions on necessary improvements.
Overall, this book serves as a valuable resource for those looking to grasp the multifaceted challenges posed by Alzheimer’s and the need for a broader societal response to address this pressing issue. It is recommended for healthcare professionals, caregivers, and anyone interested in the Alzheimer’s crisis.
Alzheimer’s disease poses a major challenge to modern medicine and healthcare fields. Despite substantial efforts and resources invested in finding effective treatments, there is still no cure in sight. This has created an urgent situation for both the medical community and society as a whole, affecting many individuals and families.
In response to this urgent issue, this review examines a compelling book that tackles the puzzle of Alzheimer’s disease head-on. The book in question, titled The Problem of Alzheimer’s, takes a deep dive into this crisis, providing readers with an insightful and empathetic exploration of a disease that has long resisted a definitive solution.
Author’s background
Jason Karlawish is a medical practitioner and author who specialises in exploring subjects that bridge the fields of bioethics, ageing, and neuroscience.
He is the author of the book Open Wound: The Tragic Obsession of Dr. William Beaumont, and his articles have been featured in publications such as The New York Times, The Washington Post, Forbes, and the Philadelphia Inquirer. Additionally, he holds the position of Professor in Medicine, Medical Ethics and Health Policy, as well as Neurology, at the University of Pennsylvania.
What is the book about?
The Problem of Alzheimer’s by Jason Karlawish is a thought-provoking book that delves into the multifaceted challenges posed by Alzheimer’s disease. The book is structured into four parts, each addressing a distinct aspect of this pressing issue, including:
• Challenges in translating diagnoses to patients and families
• Healthcare system implications
• The 20th century perspective on Alzheimer’s
• Tragedy of concealment and lack of treatment
• Opportunities to address the Alzheimer’s crisis
• Scientific advances in Alzheimer’s care
• Early diagnosis and treatment breakthroughs
Overall, The Problem of Alzheimer’s challenges readers to understand the disease’s complex history, the potential for medical advancements, and the necessity of a broader societal response to tackle Alzheimer’s disease effectively. It sheds light on the far-reaching impact of the condition and calls for a concerted effort to address this pressing issue.
Three key takeaways from The Problem of Alzheimer’s
1. Alzheimer’s disease prevalence and recognition
The book sheds light on how Alzheimer’s disease transitioned from being a seemingly rare condition to a widespread crisis. Part of this shift is attributed to an increase in cases due to longer lifespans, as people used to succumb to other diseases before developing Alzheimer’s. Additionally, for a long time, Alzheimer’s was not recognised as a distinct disease; instead, it was dismissed as senility or old age. The breakthrough made by Dr. Alois Alzheimer in identifying physical brain abnormalities associated with the disease was a pivotal moment in acknowledging it as a legitimate medical condition.
2. Politics and funding challenges
Politics played a significant role in the Alzheimer’s crisis. Despite the rise of Alzheimer’s associations to raise awareness and advocate for research funding, there were political hurdles. Congress traditionally allocated funds for medical research but resisted addressing ‘diseases of the month.’ Additionally, the post-Cold War era in the United States saw opposition to anything that resembled socialism, including comprehensive long-term care for Alzheimer’s patients. This lack of political will left families grappling with the financial burdens of Alzheimer’s care.
3. Alzheimer’s treatment challenges
Alzheimer’s has proven resistant to a quick-fix treatment, and the book discusses the history of scientific efforts to combat the disease. Researchers discovered amyloid and developed brain scans to detect it, explored genetic testing, and pursued immunotherapy drugs, but these developments led to mixed results and, in some cases, disappointment. While some drugs provide limited relief, there is still no cure. The book suggests that living well with Alzheimer’s largely involves supportive care, focusing on safety and engagement, including technologies to locate wandering individuals and creating opportunities for socialisation and stimulation.
Strengths and weaknesses, according to readers’ reviews
Strengths:
• Provides a thorough yet accessible exploration of Alzheimer’s disease, making it a valuable resource for readers of all backgrounds.
• Approaches Alzheimer’s with empathy, considering the experiences of both patients and caregivers, particularly addressing the challenges caregivers face.
• Effectively exposes the healthcare system’s shortcomings in Alzheimer’s care, sparking discussions about the need for improvements in patient support.
Weaknesses:
• The book’s structure and organisation are convoluted, making it difficult for readers to follow the content as intended, hindering the learning experience.
Best quotes from The Problem of Alzheimer’s
“The lack of sustained and steady access to these resources was one reason why Alzheimer’s disease remained stuck as the unusual disease of the cerebral cortex that he presented after lunch at the 1906 meeting in Tübingen. Other factors were at work as well. One of them was present the very afternoon after Alzheimer stepped away from the lectern: Sigmund Freud’s psychodynamic theory of mental illness.”
“There are very few of these doctors or other health care professionals committed to diagnose and treat persons with mild cognitive impairment or dementia. The reasons why include the stigma of dementia (laypeople often lean away from me when I tell them what I do). They also include the nature of the doctoring. Diagnosis is interesting. Treatment is satisfying. Alzheimer’s disease doctors however don’t have the armamentarium of treatments that cardiologists and oncologists have. Which leads to the crux of the problem: money.”
Final takeaway
The Problem of Alzheimer’s by Jason Karlawish offers a comprehensive and compassionate exploration of Alzheimer’s disease. Karlawish’s unique perspective as a medical practitioner and his empathetic approach to both patients and caregivers add depth to the narrative. The book effectively highlights the shortcomings of the healthcare system in Alzheimer’s care, igniting discussions on necessary improvements.
Overall, this book serves as a valuable resource for those looking to grasp the multifaceted challenges posed by Alzheimer’s and the need for a broader societal response to address this pressing issue. It is recommended for healthcare professionals, caregivers, and anyone interested in the Alzheimer’s crisis.
June 15, 2021
I started reading this book because my father has been diagnosed with MCI, and has a history of alzheimers in his family. As an inquisitive person, I have been perplexed at how bad we have handled Alzheimer's as both a country and a culture even before my father's diagnosis, and this book gave context to my thoughts. It also helped prepare me (if anything really can) for what's to come, and I appreciate the fact that the author is still wrestling with the complexity of the disease himself. There isn't a nice cleanly packaged sanitized answer. I'm appreciative that the author wrote a thoroughly researched historical account of alzheimers - which helped me understand where we have been, but also included real life personal stories - which gave context to what's ahead. I feel like I have a few more tools in my belt to help with whatever bend this journey takes.
Read
June 17, 2023I saw this book at the library and read the subtitle: “How Science, Culture, and Politics Turned a Rare Disease into a Crisis, and What We Can Do About It.” I said to my husband, “How can Alzheimer’s be a rare disease, if everyone I know has it?” I exaggerate, of course, but indeed, a lot of people I know have it. My husband said, “I guess you’ll just have to read the book.” So I read the book.
There are multiple reasons why Alzheimer’s seemed to go from something rare to something seemingly everywhere. One is that there probably is more of it because people are living longer. People used to die of heart disease or infections before they got a chance to develop Alzheimer’s.
Another is that Alzheimer’s was always there, but was not recognized as a disease. It was just thought of as senility, something that happened to old people sometimes. Doctors simply ignored it, while they went around treating the diseases they knew how to treat.
Dr Alois Alzheimer, in pre WWI Germany, while working in state-run mental asylums, had the opportunity to observe patients over time, and had access to a pathology laboratory. He discovered that patients who presented with similar symptoms also had similar plaques and tangles in their brains on autopsy.
That was the discovery that there was something physical going on, that memory loss and loss of function were indeed a disease like any other disease. But two world wars interrupted his studies. The attention and resources of the whole world were elsewhere.
There’s another reason Alzheimer’s seemed to appear out of nowhere. In my lifetime a number of people formed Alzheimer’s associations to increase public awareness, and to lobby Congress to provide funding for research and treatment. The awareness part was a success. The funding part would be a struggle.
Here’s where politics comes in. For one thing, there was a long-standing tradition that Congress would allocate money for medical research in general, but not to “the disease of the month.” Also, in the aftermath of the Cold War, America was opposed to anything that smacked of communism, and that included socialism, and anything suggestive of socialism.
Alzheimer’s care, the years-long, hands-on support needed to keep patients safe, required a lot of money, so much money that families were being driven into poverty. There was a push to provide public moneys for long term care, but the political will was not there.
Alzheimer’s itself has proven to be a disease resistant to treatment. There have been no silver bullets, and probably won’t be. Jason Karlawish is himself a doctor who specializes in treating patients with Alzheimer’s and other dementias. Some of the best parts of the book are his relating of his personal experiences.
He also describes the history of the science, how researchers discovered amyloid, and the ability to stain for amyloid so brain scans could detect it, and the search for drugs to treat amyloid, and for genetic testing, and for immunotherapy drugs. All of these developments began with great excitement, and ended with some degree of disappointment. Some drugs help, but only a little bit. There is still no cure.
The subtitle ends by promising “What We Can Do About It.” I think that overpromises. If there is a solution to “The Problem of Alzheimer’s,” then I missed it. Karlawish’s suggestions for living well with Alzheimer’s are mostly about what might be called supportive care. His biggest recommendations are ways to keep patients both safe and engaged. Ensuring safety included technology to locate a wandering person. Providing engagement includes letting someone help cook dinner. Adult day care centers can provide socialization and stimulation.
It was an interesting book, but I felt it was somewhat scattered, as, just as happened in real life, it pursued paths that ultimately came to nothing, or to not much, and there is no real conclusion.
There are multiple reasons why Alzheimer’s seemed to go from something rare to something seemingly everywhere. One is that there probably is more of it because people are living longer. People used to die of heart disease or infections before they got a chance to develop Alzheimer’s.
Another is that Alzheimer’s was always there, but was not recognized as a disease. It was just thought of as senility, something that happened to old people sometimes. Doctors simply ignored it, while they went around treating the diseases they knew how to treat.
Dr Alois Alzheimer, in pre WWI Germany, while working in state-run mental asylums, had the opportunity to observe patients over time, and had access to a pathology laboratory. He discovered that patients who presented with similar symptoms also had similar plaques and tangles in their brains on autopsy.
That was the discovery that there was something physical going on, that memory loss and loss of function were indeed a disease like any other disease. But two world wars interrupted his studies. The attention and resources of the whole world were elsewhere.
There’s another reason Alzheimer’s seemed to appear out of nowhere. In my lifetime a number of people formed Alzheimer’s associations to increase public awareness, and to lobby Congress to provide funding for research and treatment. The awareness part was a success. The funding part would be a struggle.
Here’s where politics comes in. For one thing, there was a long-standing tradition that Congress would allocate money for medical research in general, but not to “the disease of the month.” Also, in the aftermath of the Cold War, America was opposed to anything that smacked of communism, and that included socialism, and anything suggestive of socialism.
Alzheimer’s care, the years-long, hands-on support needed to keep patients safe, required a lot of money, so much money that families were being driven into poverty. There was a push to provide public moneys for long term care, but the political will was not there.
Alzheimer’s itself has proven to be a disease resistant to treatment. There have been no silver bullets, and probably won’t be. Jason Karlawish is himself a doctor who specializes in treating patients with Alzheimer’s and other dementias. Some of the best parts of the book are his relating of his personal experiences.
He also describes the history of the science, how researchers discovered amyloid, and the ability to stain for amyloid so brain scans could detect it, and the search for drugs to treat amyloid, and for genetic testing, and for immunotherapy drugs. All of these developments began with great excitement, and ended with some degree of disappointment. Some drugs help, but only a little bit. There is still no cure.
The subtitle ends by promising “What We Can Do About It.” I think that overpromises. If there is a solution to “The Problem of Alzheimer’s,” then I missed it. Karlawish’s suggestions for living well with Alzheimer’s are mostly about what might be called supportive care. His biggest recommendations are ways to keep patients both safe and engaged. Ensuring safety included technology to locate a wandering person. Providing engagement includes letting someone help cook dinner. Adult day care centers can provide socialization and stimulation.
It was an interesting book, but I felt it was somewhat scattered, as, just as happened in real life, it pursued paths that ultimately came to nothing, or to not much, and there is no real conclusion.
March 16, 2023
I read this for a neuroscience book club I co-run. Comment if you want our book report :)
First of all, this book was not at all what I thought it would be about from the byline. I thought it was going to be arguing that Alzheimer's has been given way more attention than it deserves ("turned a disease into a crisis") and was actually not as big of a medical problem as it had been made out to be. I thought that would be quite a difficult position to argue. Anyway, that's not what the book is about at all. The author is instead contending that Alzheimer’s disease was once a rare disease, and then it became common, and then it turned into a crisis, in large part because of the lack of support for caregivers. The layout of the book is:
Part 1 explains what AD is and the enduring challenges of translating this complicated and nuanced diagnosis to patients, families, and health care systems.
Part 2 looks back over the 20th century and shows how science collided with politics/culture to keep the disease untreated and hidden.
Part 3 shows how we can address the crisis.
Part 4 is what we do next.
I enjoyed the portions regarding the science of AD. Specifically, the opposition against imaging amyloid (the garbage can) as a diagnostic tool, and how the tool was eventually developed. I was interested in Karlawish's descriptions of the current state of amyloid-clearing drugs in clinical trials.
From outside reading, I learned that the progression went something like this:
Two monoclonal antibodies were developed in 2014 to remove amyloid plaques from the brains of people with AD. Neither medication improved cognitive scores in patients with mild-to-moderate disease (MMSE 16–26), leading researchers to conclude that these medications may show benefit only when administered in the early stages of MCI and mild dementia. However, a later study regarding the effect of this class of medication in patients with few to no symptoms (MMSE 20–26) but a positive amyloid PET imaging result also failed to show a significant difference in cognitive outcomes between the study group and asymptomatic controls. The drugs do clear amyloid beta plaques in humans, with reductions of 5-6 fold over a year at the highest dose (aducanumab). One issue was that only 0.1% of the administered antibody penetrates the brain. The aducanumab trial only worked at 10 mg/kg. So now the trend is to administer high levels of all the antibodies. But still clear benefits have not emerged. Why is this? It could be because some of the drugs are targeting the wrong part of AB. The N-terminus seemed best to target since it’s often exposed in aggregates, but when some fragments (like AB42) coalesce, the N-terminus is not exposed. There's also a trend to start trials earlier, since the modest benefits that have been seen tend to be in patients at mild stages of the disease at the start of the trials. Some things that are in development are
-better secretase inhibitors (such as BACE-1 selective inhibitors)
-draining the plasma of amyloid to encourage drainage from the brain
-drugs targeting p-tau
Anyway, I liked the process-centric way in which the scientific portions of this book were presented, and it got me interested in looking up the answers to all the questions this narrative raised along the way. However, a lot of the book is about caregiver burden and the changing politics of funding for AD research (apparently there was a lot of resistance to national support for specific disease research as opposed to basic science? Still not clear to me why that was). I just wasn't that interested in most of the book because I'm not super interested in those topics.
Overall, would recommend this book to someone interested in the intersection of AD and society, but not to someone just interested in the science of the disease and its treatments.
First of all, this book was not at all what I thought it would be about from the byline. I thought it was going to be arguing that Alzheimer's has been given way more attention than it deserves ("turned a disease into a crisis") and was actually not as big of a medical problem as it had been made out to be. I thought that would be quite a difficult position to argue. Anyway, that's not what the book is about at all. The author is instead contending that Alzheimer’s disease was once a rare disease, and then it became common, and then it turned into a crisis, in large part because of the lack of support for caregivers. The layout of the book is:
Part 1 explains what AD is and the enduring challenges of translating this complicated and nuanced diagnosis to patients, families, and health care systems.
Part 2 looks back over the 20th century and shows how science collided with politics/culture to keep the disease untreated and hidden.
Part 3 shows how we can address the crisis.
Part 4 is what we do next.
I enjoyed the portions regarding the science of AD. Specifically, the opposition against imaging amyloid (the garbage can) as a diagnostic tool, and how the tool was eventually developed. I was interested in Karlawish's descriptions of the current state of amyloid-clearing drugs in clinical trials.
From outside reading, I learned that the progression went something like this:
Two monoclonal antibodies were developed in 2014 to remove amyloid plaques from the brains of people with AD. Neither medication improved cognitive scores in patients with mild-to-moderate disease (MMSE 16–26), leading researchers to conclude that these medications may show benefit only when administered in the early stages of MCI and mild dementia. However, a later study regarding the effect of this class of medication in patients with few to no symptoms (MMSE 20–26) but a positive amyloid PET imaging result also failed to show a significant difference in cognitive outcomes between the study group and asymptomatic controls. The drugs do clear amyloid beta plaques in humans, with reductions of 5-6 fold over a year at the highest dose (aducanumab). One issue was that only 0.1% of the administered antibody penetrates the brain. The aducanumab trial only worked at 10 mg/kg. So now the trend is to administer high levels of all the antibodies. But still clear benefits have not emerged. Why is this? It could be because some of the drugs are targeting the wrong part of AB. The N-terminus seemed best to target since it’s often exposed in aggregates, but when some fragments (like AB42) coalesce, the N-terminus is not exposed. There's also a trend to start trials earlier, since the modest benefits that have been seen tend to be in patients at mild stages of the disease at the start of the trials. Some things that are in development are
-better secretase inhibitors (such as BACE-1 selective inhibitors)
-draining the plasma of amyloid to encourage drainage from the brain
-drugs targeting p-tau
Anyway, I liked the process-centric way in which the scientific portions of this book were presented, and it got me interested in looking up the answers to all the questions this narrative raised along the way. However, a lot of the book is about caregiver burden and the changing politics of funding for AD research (apparently there was a lot of resistance to national support for specific disease research as opposed to basic science? Still not clear to me why that was). I just wasn't that interested in most of the book because I'm not super interested in those topics.
Overall, would recommend this book to someone interested in the intersection of AD and society, but not to someone just interested in the science of the disease and its treatments.
January 20, 2022
In The Problem of Alzheimer’s Disease Dr. Jason Karlawish, the co-director of the Penn Memory Center at the University of Pennsylvania School of Medicine in Philadelphia, provides a superb and comprehensive analysis of “the disease of the century”, from the standpoint of a clinician who routinely diagnoses and treats patients with all forms of dementia, including Alzheimer’s disease, who is also a physician researcher, bioethicist, and medical historian who has spent his career studying this dreaded and pervasive illness that has afflicted millions of people around the world, and adversely affected many other family members of the sufferers.
Karlawish begins by noting a landmark 1976 editorial in the journal Archives of Neurology by Dr Robert Katzman, the chairman of the Department of Neurology at Albert Einstein College of Medicine, titled “The Prevalence and Malignancy of Alzheimer Disease,” which first sounded the alarm about the high prevalence of this underrecognized cause of morbidity and mortality in elderly Americans, a disease that he estimated to be the fourth or fifth most common cause of death in the United States. His commentary did not fall on deaf ears, as the National Institute of Aging, a new division within the National Institutes of Health, chose Alzheimer’s disease as its primary focus, bipartisan political support for this dreaded disease led to more funding and greater public attention on this malady, and researchers worked tirelessly to discover diagnostic techniques that would permit earlier and more definitive diagnoses, and uncover new medications targeted at the processes that caused the disease to progress. Forty five years have passed since Dr Katzman’s call to action, yet Alzheimer’s disease has neither been cured nor alleviated to an appreciable degree.
Part 1 of The Problem of Alzheimer’s describes what Alzheimer’s disease is, how it is diagnosed, and how it differs from other forms of dementia, such as Lewy body disease. The stages of the disease are characterized, the burden of moderate and severe Alzheimer’s on spouses, children and other family members is chronicled, and the astronomical cost of care is mentioned. The modern history of Alzheimer’s disease is recounted, with detailed descriptions of the researchers and clinicians whose studies were the most important in advancing knowledge about it. Part 2 recalls the early history of the disease, which was first described by the German psychiatrist Dr Alois Alzheimer in the first decade of the 20th century, based on a small number of patients he cared for, along with meticulous studies of biopsied and stained brain tissue after their deaths, which first demonstrated the plaques and tangles that are characteristic of this form of dementia. In Part 3, Dr Karlawish describes the sociopolitical barriers that prevent Alzheimer’s patients from receiving adequate and optimal care for the disease and its sequelae, and Part 4 serves as a second call to action, while acknowledging the limitations and barriers that must be overcome to give the best care for these patients, along with the great distance that must be bridged before a true cure is achieved.
The Problem of Alzheimer’s is written for a lay audience, yet it has enough detail to satisfy scientists, clinicians and policy makers who wish to understand more about the science behind the different medications and diagnostic modalities available for people with the disease. My mother has moderate Alzheimer’s disease and is followed by one of Dr Karlawish’s colleagues at the Penn Memory Center, so this book was both essential and very helpful, now that I have assumed the role of primary caregiver of Mom after my father’s recent death.
Karlawish begins by noting a landmark 1976 editorial in the journal Archives of Neurology by Dr Robert Katzman, the chairman of the Department of Neurology at Albert Einstein College of Medicine, titled “The Prevalence and Malignancy of Alzheimer Disease,” which first sounded the alarm about the high prevalence of this underrecognized cause of morbidity and mortality in elderly Americans, a disease that he estimated to be the fourth or fifth most common cause of death in the United States. His commentary did not fall on deaf ears, as the National Institute of Aging, a new division within the National Institutes of Health, chose Alzheimer’s disease as its primary focus, bipartisan political support for this dreaded disease led to more funding and greater public attention on this malady, and researchers worked tirelessly to discover diagnostic techniques that would permit earlier and more definitive diagnoses, and uncover new medications targeted at the processes that caused the disease to progress. Forty five years have passed since Dr Katzman’s call to action, yet Alzheimer’s disease has neither been cured nor alleviated to an appreciable degree.
Part 1 of The Problem of Alzheimer’s describes what Alzheimer’s disease is, how it is diagnosed, and how it differs from other forms of dementia, such as Lewy body disease. The stages of the disease are characterized, the burden of moderate and severe Alzheimer’s on spouses, children and other family members is chronicled, and the astronomical cost of care is mentioned. The modern history of Alzheimer’s disease is recounted, with detailed descriptions of the researchers and clinicians whose studies were the most important in advancing knowledge about it. Part 2 recalls the early history of the disease, which was first described by the German psychiatrist Dr Alois Alzheimer in the first decade of the 20th century, based on a small number of patients he cared for, along with meticulous studies of biopsied and stained brain tissue after their deaths, which first demonstrated the plaques and tangles that are characteristic of this form of dementia. In Part 3, Dr Karlawish describes the sociopolitical barriers that prevent Alzheimer’s patients from receiving adequate and optimal care for the disease and its sequelae, and Part 4 serves as a second call to action, while acknowledging the limitations and barriers that must be overcome to give the best care for these patients, along with the great distance that must be bridged before a true cure is achieved.
The Problem of Alzheimer’s is written for a lay audience, yet it has enough detail to satisfy scientists, clinicians and policy makers who wish to understand more about the science behind the different medications and diagnostic modalities available for people with the disease. My mother has moderate Alzheimer’s disease and is followed by one of Dr Karlawish’s colleagues at the Penn Memory Center, so this book was both essential and very helpful, now that I have assumed the role of primary caregiver of Mom after my father’s recent death.
March 7, 2021
THE PROBLEM OF ALZHEIMER'S by Jason Karlawish received starred reviews from Kirkus ("an outstanding primer") and Library Journal ("a must-read"). I have ordered a copy for our high school library since this is a high interest topic for many of our students. They are watching parents face tough choices with respect to care for grandparents as well as dealing with their own feelings of missing the grandparent they once knew and fear about the disease in general. Karlawish, University of Pennsylvania professor and co-director of Penn Memory Center, has subtitled his book "How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It." He divides the book into sections titled Alzheimer's Unbound; The Birth of Alzheimer's Disease; Living Well in the House of Alzheimer's, and A Humanitarian Problem. He reviews key points in the history of the disease (including founding of Alzheimer's Association in 1979 and scientific papers labeling it the "disease of the century" in 1981 and a 2009 report titled A National Alzheimer’s Strategic Plan), tracing "the story of how once upon a time, Alzheimer's was a rare disease, and then it became common, and then it turned into a crisis." As with climate change, scientists have been warning us about the physical, emotional, and economic impact of dementia as members of our society age, leading to questions of policy and government involvement. Karlawish describes scientific advances, opportunities in social, environmental, and psychological interventions for patients and caregivers, as he "explains why and what we have to do." This call to action is an extremely valuable resource written in an accessible manner, complete with notes, a glossary, selected bibliography, and helpful index.
July 12, 2021
The approval of Biogen’s Aducanumab has recently grabbed the headline because Alzheimer’s disease is a big problem. Dr. Jason Karlawish guided us through the tangles of dementia caused by Alzheimer’s, from the discovery, detection, to caring and the possible treatment of this disease that not only disables the patients but most times cripples the caregivers and family of the patients. Patients and family are crying for treatment, a cure, but apologetically and sadly, there may not be panacea but the combination of social, economic, medical, caring, technology etc. that are needed for the caring of these desperate patients. For an example, while reading this book, I was also reading the book, The New Breed by Kate Darling. Both authors had the same idea of robots and animals that can care for or provide comforting companion to people who are suffering from dementia.
Spoiler alert: there is deja vu of the approval of Aducanumab when you read the history of approvals of Alzheimer’s drugs previously. Many, hopefully not Aducanumab, are approved based on hope.
Spoiler alert: there is deja vu of the approval of Aducanumab when you read the history of approvals of Alzheimer’s drugs previously. Many, hopefully not Aducanumab, are approved based on hope.
This entire review has been hidden because of spoilers.
March 18, 2021
This is a "must read." Whether you have been impacted by Alzheimer's disease, concerned about your own future, or simply interested in learning more about the disease this book will grab your attention and never let go. The author tells a fascinating story about how we got to where we are today and the influences culture, society, and politics had on the science itself. He tells personal stories from his own clinic and weaves everything together to share a message that we can do better for each other. The book is more than a historical account of Alzheimer's disease, it is a call to action with proposed ideas on how we can improve the care for people with cognitive impairment and the caregivers who support them. As a Geriatrician, an educator, and a family member of someone affected by the disease, I recommend this book to patients, caregivers, health care providers, students, community members, and anyone invested in a better tomorrow.
May 5, 2021
If you are reading this book in hopes of reading about a cure, don't bother. There isn't one yet but the activists and scientist are working hard on it. But if you want to learn about the disease history and also hear about it from a doctor that focuses all of his attention on patients with dementia, this book is for you.
I found this book interesting and devastating all at the same time. It is also very thought provoking, and somewhat terrifying. Would I want an amyloid scan? Would I want genetic testing for alzheimers genes? What do I want to change about my advanced directive after reading this book? There is some great info on the support systems available to caregivers of people with dementia.
I feel this is an important book and hope that in 10, 15, or 20 years he will write an anniversary edition that is updated with a cure or prevention!
I found this book interesting and devastating all at the same time. It is also very thought provoking, and somewhat terrifying. Would I want an amyloid scan? Would I want genetic testing for alzheimers genes? What do I want to change about my advanced directive after reading this book? There is some great info on the support systems available to caregivers of people with dementia.
I feel this is an important book and hope that in 10, 15, or 20 years he will write an anniversary edition that is updated with a cure or prevention!
March 17, 2025
Thorough book which is relatively up to date on the state of knowledge regarding Alzheimer's Disease, as well as the varied means of
managing
this
incurable
and horrible disease.
The thing that makes this book superior to many is the fact that it explains how scientific inquiry works, not only for understanding what causes Alzheimer's and what can be done medically, but also how mere procedural interventions in the ER/Notlazarett can reduce the morbidity of Alzheimer's, while, as of yet, there is nothing that can affect the mortality or the prognosis of the disease.
It is also good to see Dr. Karlawish emphasise that Alzheimer's is a disease not only of the person who has it, but also of that person's caregiver(s), if any, something that is often not acknowledged.
The thing that makes this book superior to many is the fact that it explains how scientific inquiry works, not only for understanding what causes Alzheimer's and what can be done medically, but also how mere procedural interventions in the ER/Notlazarett can reduce the morbidity of Alzheimer's, while, as of yet, there is nothing that can affect the mortality or the prognosis of the disease.
It is also good to see Dr. Karlawish emphasise that Alzheimer's is a disease not only of the person who has it, but also of that person's caregiver(s), if any, something that is often not acknowledged.
April 28, 2021
Have not finished this yet, but it is truly a wonderful book. I am very glad for the opportunity I had to enter and win this book in a giveaway! I learned so much about Alzheimer's that I did not know before and as an aspiring neurologist this was truly a delight. Karlawish goes into detail about Alzheimer's the thief of autonomy, and gives us the hard facts incorporating science, culture and politics all in one.
Highly recommend for anyone interested in the medical field! If you are an aspiring doctor,nurse, worker in the medical field or simply love learning about science,culture and politics; grab yourself a copy and you will not regret it!
Looking forward to more books from Karlawish!
Highly recommend for anyone interested in the medical field! If you are an aspiring doctor,nurse, worker in the medical field or simply love learning about science,culture and politics; grab yourself a copy and you will not regret it!
Looking forward to more books from Karlawish!
May 9, 2021
Dr Karlawish addresses a topic that overwhelms so many in today's society and he tells us why. He takes a 30,000 feet view of Alzheimer's but captures the human component.
His talent is as a writer who happens to be a doctor at Penn State Memory clinic. His experience brings an insight to this work that
Not a tale of one family rather a tale of one disease so misunderstood, underdiagnosed and devastating to families. He captures the issues with his humanistic approach and kindness.
This is a must read for everyone who works with elders whether they are healthy and well or ailing. Also for all those related to anyone aging. Yes, that is right all can learn from this well researched and timely book.
His talent is as a writer who happens to be a doctor at Penn State Memory clinic. His experience brings an insight to this work that
Not a tale of one family rather a tale of one disease so misunderstood, underdiagnosed and devastating to families. He captures the issues with his humanistic approach and kindness.
This is a must read for everyone who works with elders whether they are healthy and well or ailing. Also for all those related to anyone aging. Yes, that is right all can learn from this well researched and timely book.
August 18, 2021
I didn't care for this book. I was interested initially, reading about the discovery of AD, early diagnostic methods, etc, but for me it was just bogged down with info that I don't really need, eg how the US doesn't fund many aspects of testing and care, how expensive it is, how difficult it is in the US for tests/treatments etc to be recognized, things like that, although the suggestion of social insurance was interesting. I am a middle-class Canadian and my father has AD but his treatment (medication, home health aides, and now a long-term care home) is covered by his insurance and his pension. I guess I was looking more for something positive like what is new and coming for treatment and prevention. Or maybe I just wasn't in the mood for this.
January 8, 2022
This was an interesting book that details what we know about Alzheimer's and what we are trying to do about it. Some of the information I hadn't known and found interesting. The last part of the book is the most unsatisfying as his primary prescription is for people caring for those with Alzheimer's to continue to be present with them. He suggests ways of thinking about things but also discusses how very difficult it is to navigate particularly the late stages of Alzheimer's because it involves others trying to evaluate the quality of a person's life with little to no input from the person. This is a vexing question. But it is a useful book that I would recommend to anyone interested in thinking through the issues involved.
February 7, 2024
In a rather non-linear way, Dr. Karlawish covers the history of Alzheimer's: how the increase in lifespans led to doctors realizing that senility isn't just a normal part of aging, how Alois Alzheimer and other pioneers in the field were all but forgotten in the wake of WWI and the rise of psychoanalysis, how Alzheimer's Disease became nationally (and globally) recognized in the 1970s and 80s, all the recent discoveries, diagnostic tools, treatments, etc., and how the approach to treating people with Alzheimer's has changed. Honestly, it's a bit all over the place and beyond my interest and comprehension in all the sciencey/medical details. The parts I found most interesting were the case studies and examples from Dr. Karlawish's years of practicing elder care and specializing in Alzheimer's/cognitive impairment/senility.
I was searching for books on Alzheimer's and this one is new and shiny and highly rated. I think a general overview of the disease with case studies and a condensed version of the history would suit my needs better. (Although at this point, I've covered the history, so more of a What To Expect When Your Loved One Has Alzheimer's would be helpful. I want to say without all the gloom and doom of the pregnancy book whose title I'm parodying, but g&d is kind of inevitable with an incurable disease.) At any rate, book recommendations on this subject would be much appreciated.
I was searching for books on Alzheimer's and this one is new and shiny and highly rated. I think a general overview of the disease with case studies and a condensed version of the history would suit my needs better. (Although at this point, I've covered the history, so more of a What To Expect When Your Loved One Has Alzheimer's would be helpful. I want to say without all the gloom and doom of the pregnancy book whose title I'm parodying, but g&d is kind of inevitable with an incurable disease.) At any rate, book recommendations on this subject would be much appreciated.
May 28, 2021
This is an incredible account of the history of documenting Alzheimer’s Disease, the progression of research, and the failure of the United States to provide adequate funding and support for those with Alzheimer’s and their caregivers.
Stories of patients and families and the innovative (but not available in most locations) practices of care, and the heartbreaking consequences of the the disease are the strength and beauty of this book. From about page 207 to the conclusion was the most engrossing section for me.
Compassionate. Well-written. Educational. Heart wrenching. Highly recommended.
Stories of patients and families and the innovative (but not available in most locations) practices of care, and the heartbreaking consequences of the the disease are the strength and beauty of this book. From about page 207 to the conclusion was the most engrossing section for me.
Compassionate. Well-written. Educational. Heart wrenching. Highly recommended.
April 14, 2021
Unfortunately, almost all of us have dealt with the problem of dementia in our own families or know others who have. A diagnosis of Alzheimer's Disease is a terrifying proposition and still carries a great deal of stigma. It was fascinating to read the historical background of this disease, including the political roadblocks. I was most impressed with the author's concern for treating his patients with respect and dignity. Thanks to NetGalley and St. Martin's Press for the advance copy to read and review.
July 30, 2021
I heard Dr. Karlawish interviewed by Brene Brown on her podcast and was struck by his accessibility. Also, my mother has been diagnosed with MCI due to Alzheimer's, so I decided to read this book. I found the history of the disease interesting, and the diagnoses of Alzheimer's explained in a way I can follow and understand. It is clear Dr. Karlawish is passionate about understanding and explaining this horrible disease to the general public. I found the section on the humanitarian aspect of treating Alzheimer's most compassionate.
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