Summary
The Problem of Alzheimer's by Jason Karlawish outlines a history of Alzheimer's research and the political and societal factors that have influenced the trajectory of progress in the disease. The subtitle makes it sound like Jason Karlawish believes that Alzheimer's is actually a rare disease, but this isn't true. Instead, the book is more focused on the question of why Alzheimer's disease, despite its prevalence, has not been considered a crisis until the past few decades - and why solutions to the crisis have been so slow after it was identified. Most of the chapters weave in and out of patient narratives, some historical perspective on how people thought about dementia and its science, and some of the debates especially around caretaking of those with Alzheimer's dementia - so I've done my best to try to reduce the chapters into important themes, but it might be biased by the themes that interest me - so just throwing that out there.
The first section of the book deals with the science and understanding about what Alzheimer's pathology is and introduces conceptual shifts in the science that have directed the course of Alzheimer's research.
Chapter 1 introduces a shift in thinking that led to the modern trajectory of Alzheimer's research and treatment, which began with a team of researchers in Rochester, Minnesota trying to count and track how many people had Alzheimer's disease in Olmsted County. This project eventually leads to discoveries that point to Alzheimer's pathology occurring before dementia - making it a more promising target for treatment.
Chapter 2 expands on the history of that project in Rochester, which drew on a longstanding medical record in Olmsted County - which had been in existence from 1907 and was still going in 1984. Bob Ivnik wanted to use the records to create norms for cognitive tests for individuals older than 74, which did not exist.
Chapter 3 introduces the concept of Mild Cognitive Impairment, which was the main important intellectual result of the study - which described individuals who presented with mild changes in memory and thinking, but also led to an increased risk of developing outright Alzheimer's dementia in the future.
Chapter 4 introduces Bill Klunk and Chet Mathis, who worked with the Swede Bengt Langstrom, to create a PET radiotracer that could bind to amyloid beta in the brain, which was the first major diagnostic tool for diagnosing Alzheimer's disease pre-mortem - it was invented in 2002.
Chapter 5 discusses biomarkers associated with Alzheimer's disease more generally, and discusses the sharp distinction between research on Alzheimer's and clinical care. Basically, while AD biomarkers are being developed, there is some concern about not having enough knowledge to explain a patients risk of developing dementia, but also there isn't an effective treatment for Alzheimer's pathology, so insurers aren't convinced that the tests are worth their cost or without risk of harm.
Chapter 6 talks about the researcher, Avid, who pushed hard for validating the PET scan by conducting a correlation study between imaging results and amyloid levels in postmortem brains.
Chapter 7 is the summary of part I, and also introduces the thesis for the next parts of the book - that the Alzheimer's crisis has been profoundly impacted by social features including world wars, economic recessions, fears of communism, and competing values about family dynamics.
The second section of the book takes a step back and teaches us the history of Alzheimer's disease. I would say, based on the title of the book, this section is really the meat of Karlawish's thesis. The section addresses the question of why, since we knew about Alzheimer's disease since the early 1900's, was it not heavily investigated and regarded as a crisis until quite recently (e.g. the 1980s).
Chapter 8 introduces the core themes of the section - that Alzheimer's disease shifted from being seen as a private family problem and natural feature of aging to a disease (which also explains somewhat why it wasn't really given much attention as a medical problem until that shift in perspective)- and that there is a rapidly increasing aging population in the world and the united states - so a lot more people are getting Alzheimer's at the same time that ideas about caretaking have dramatically changed.
Chapter 9 discusses how despite some early interest by researchers such as Oskar Fischer and Arnold Pick in describing the pathology of Alzheimer's - a current of pro-Freudian psychiatry and a suppression of research during world wars presented challenges to the continued research of Alzheimer's disease through most of the early 20th century.
Chapter 10 begins talking about some of the breaks in the clouds that were obscuring Alzheimer's research. Karlawish thinks that the success of certain other neurological drugs had a big impact in providing hope - pharmaceutical treatments for Parkinson's disease and antiepileptics in the 1960s and 1970s made people wonder if there could be similar things for dementia, which also led to the organization of advocacy groups.
Chapter 11 talks about the role of movements supporting gender rights in the 1970s in shifting expectations about caretaking. Smaller family sizes were becoming more normal as well as increased family dispersal, and so family-caretaking for elderly relatives was changing a lot.
Chapter 12 discusses the organization of the Alzheimer's Association by Jerry Stone, which formed in the late 1970's, and also introduced the ongoing political battles within the organization - present from its inception - about whether it should be about Alzheimer's or all dementias, and whether the focus should be on cure or caretaking.
Chapter 13 was all about Hilda Pridgeon, who was another major advocate for a national long-term care system in the late 1970s. The chapter discusses how Cold War fears about communism and socialism prevented progressive legislation for very expensive long-term care programs in the United States.
Chapter 14 discusses how the HIV/AIDS epidemic and cancer research took over as leading national medical concerns in the 1970s and 1980s, de-prioritizing Alzheimer's research. However, when President Ronald Reagan announced that he had Alzheimer's, there was a renewed national interest.
Chapter 15 discusses the first FDA approved medications for Alzheimer's, which brought hope, but were largely ineffective. They act by boosting cognitive function and memory for a short period of time, but don't target any of the pathology of the disease. A main theme of this chapter was also the tension between care and cure - for instance, behavioral interventions are much more effective for treating some of the negative aspects of Alzheimer's disease, but obviously don't target the pathology at all - so there are arguments about where research funding and resources should be allocated.
Part III is all about coping with Alzheimer's disease in the absence of treatments.
Chapter 16 is about how many people who suffer from Alzheimer's disease are neglected - the disease is often ignored on death certificates - and is a general call-to-arms to doing better in providing care and education for caretakers, rather than just focusing on finding a cure.
Chapter 17 talks about how the Affordable Care Act has impacted the care of people with Alzheimer's, which has allowed reimbursements for the creation of care plans with physicians that eases some of the financial burden of caretaking and supports caretaker education.
Chapter 18 highlights a story about the Geriatric Fracture Program which helps integrate information across physicians and other health professionals to improve patient outcomes in hospitals for the elderly, mainly by pretty straightforward interventions regarding information exchange.
Chapter 19 introduces Jeff Kaye, here at OHSU, and his more holistic approach to dementia, which tries to consider social and psychological influences in biomedicine and focus on functional outcomes. He has been promoting integrating lots of technology to track many aspects of a patient's life to get a broader idea of real-life function, and not depend so much on self-report or caretaker report.
Chapter 20 discusses the challenge of patient dignity and assessing issues like consent and the rights of self-determination.
Chapter 21 talks about a change to the unwritten rule of Congress of not doing disease-specific research funding to a new national plan specifically addressing Alzheimer's, which has result in millions of dollars pouring in for Alzheimer's specific research.
Chapter 22 talks about the complexity of Alzheimer's disease pathology and where the research stands. It brings up the heterogeneity of the disease pathology and rehashes Karlawish's perspective that much more focus needs to be put on better prevention through lifestyle factors and care, rather than just a research focus on a cure.
Finally, the last section of the book is "A Humanitarian Problem" and digs into the ethics surrounding human dignity and fairness around the treatment and care of Alzheimer's disease.
Chapter 23 talks about the correlation between social and economic disparities that impact the risk of Alzheimer's disease and dementia.
Chapter 24 brings up the ethical questions around how a diagnosis of Alzheimer's disease through early detection might affect someone's life. How would a diagnosis affect the stigma against someone such as how they were treated at work or in their families?
Chapter 25 discusses ethics around care. Should toys or robots be used for caretaking? How much should patients be deceived in pursuit of their comfort and positive emotional state.
Chapter 26 discusses other kinds of stigmas around caretaking for Alzheimer's and the particular difficulty around it. For instance, many caretakers and patients form extramarital relationships during the course of the disease.
Chapter 27 focuses on the difficult topic of the right-to-life, euthanasia, and consent issues around people with dementia. For instance, if someone says that they would not like to be kept alive if they can't recognize their family, but then when they reach that level of dementia, they express wanting to live, which directive should have more weight? Should people be allowed to be euthanized, even if the prognosis is that they may live for several more years? There was this weird bit about how some patients are stopped being fed, rather than just euthanized, which struck me as cruel.
Discussion questions:
Right now, long-term care is the most expensive part of Alzheimer's disease, but is not covered by Medicare. Even so, in 2020, 155 billion was spent on Alzheimer's care, which is projected to grow to be about 1/3 of Medicare spending (584 billion) by 2050 (a growth of 278%).
National spending on long-term care is significantly more costly (although a lot of these costs are covered by Medicaid after elderly people are impoverished). What do you think is the best way to address this crisis through national policy on care?
Who should determine the significance of if a drug is helpfulor not? How do you determine if a drug with a small effect is worth it or not? How do you determine if a drug with a small effect is worth it? Drug cost goes into determination of approval of drugs in many countries - should this also be true in the United States?
In determining the ethics around euthanasia, should directives from the past or the present be weighed more strongly in cases of dementia. For example, if someone asks to be euthanized at the point when they can no longer recognize their family, but then suggests that they do not want to die at that point, how should that case be handled?
It was alarming to me when the book brought up bringing in helpers into Alzheimer's care facilities to help people with dementia to vote, but that led me to think about voting rights more generally, like if most people know enough about issues for an educated vote? Do I? Do you think that people with dementia should be allowed to vote? Why or why not, and at what point, if any, should the right be taken away?
Scamming adults with dementia is somewhat common. What can be done to ameliorate that risk without removing someone's independence?
I feel like I would be a lot more comfortable with court orders and doctors able to remove someone's freedoms and independence if it was easier to get it back somehow. What do you think should be the threshold for those types of decisions - like whether a child wants to get help managing the finances of their parent with dementia but the person with dementia doesn't want that.
Would you want to know if you were likely to get dementia in the next 5-10 years? Who would you tell?
I was surprised by the unwillingness of so many people to divorce their spouses with Alzheimer's even though they could financially save a lot of their combined wealth. Why do you think this is? Would you do that?