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March 02, 2021

The Problem of Alzheimer’s – How Science, Culture, and Politics Turned a Rare Disease Into a Crisis and What We Can Do About It, by Dr. Jason Karlawish

Reviewed by David Godfrey, Senior Attorney, ABA Commission on Law and Aging
Now Available!

Now Available!

The Problem of Alzheimer’s – How Science, Culture, And Politics Turned a Rare Disease Into A Crisis And What We Can Do About It, by Dr. Jason Karlawish

The PDF in which this article appears can be dowloaded here: Bifocal Vol. 42 Issue 4.

Listen to a brief interview with the author. 

“The Problem of Alzheimer’s” is the most enlightening book about Alzheimer’s that I have ever read.  The book explores Alzheimer’s, the leading cause of dementia in older adults, from the first reported case in the early 1900’s, to current medical research and state of the art medical and personal care treatment for persons living with dementia and their families. Alzheimer’s touches the lives of virtually everyone one of us. We are all either related to someone, work with someone, or are friends with someone who either is a person living with dementia or is a caregiver of a person with dementia.   

The author, Dr. Jason Karlawish, is a professor of medicine, medical ethics and health policy, and neurology at the University of Pennsylvania and Co-director of the Penn Memory Center. He has spent much of the last 20 years working with persons with Alzheimer’s, including being a part of cutting-edge clinical trials on diagnosis and treatment of Alzheimer’s. He also serves as a Commissioner on the ABA Commission on Law and Aging. Dr. Karlawish has collaborated with the Commission on our landmark series of handbooks on understanding and assessing capacity, and on our work on voting rights for persons with diminished capacity. 

My interest in working with older adults, took root as a family caregiver for a grandfather with dementia in the 1970s. An essay by Dr. Robert Katzman titled, “The Prevalence and Malignancy of Alzheimer’s Disease: A Major Killer”, was published in 1976 in the “Archives of Neurology”, reigniting interest in scientific research into the cause of Alzheimer’s, just months before my grandfather died with Alzheimer’s. The book explores how World War I interrupted scientific research into the medical causes of Alzheimer’s and how the rise of Fascism, World War II and Freudian Psychology delayed research into the science of Alzheimer’s for decades.  The state-of-the-art research at the start of World War I was pretty much the state-of-the-art research when my grandfather became progressively forgetful, and confused in the 1970’s.  The book explores the progress of understanding brain science over the past 40 years, with a heavy emphasis on the amazing research of the past 20 years. 

Alzheimer’s disease is characterized by changes in the structure of the brain, known as plaques and tangles, and resulting atrophy of brain cells, that often result in dementia, a decline in cognition including executive function – decision making, and memory. The book clearly describes the cause-and-effect relationship between the disease Alzheimer’s, and the effect being dementia.  One of the mysteries is the outliers, people with plaques and tangles indicating the presence of Alzheimer’s disease – that do not have a measurable dementia.  This demonstrates a clear distinction between the disease of Alzheimer’s, and the often-resulting effect of dementia. This book focusses on Alzheimer’s and briefly talks about other causes of dementia.  If we can prevent, treat, or cure Alzheimer’s we can improve the lives of millions of older adults and their caregivers. 

The book explores developments in diagnosing Alzheimer’s in very understandable terms.  For example, the book explains how characteristic plaques were identified over 100 year ago, but until recently the only way to verify the presence of them in a person’s brain was to examine samples taken from the person’s brain.  With no effective treatment, the risk of a brain biopsy on a living person was not justified. For a century, the only definitive diagnosis of Alzheimer’s occurred after death.  Developments over the past 20 years have changed this. With MRI and special marker chemicals, it is now possible to identify Alzheimer’s in a living person.  Dr. Karlawish explores the ethical issues of disclosing a diagnosis in absence of a viable treatment or cure. 

The book details clinical trials of diagnostic tools and treatments.  In a very understandable way, the book explains what drugs have been tried, how the drugs were hoped to work, and what the outcome has been.  Dr. Karlawish has been a part of many of the clinical trials and he knows or collaborates with most of the researchers in Alzheimer’s, giving him a very first person – center-of-the-storm perspective on research and testing. 

The book is very well written.  It is a balance of science and story-telling that brings what could be dry content to life. The content paints a very real picture of the history leading us to today, and the current picture of diagnosis and treatment. 

One of the things that sets this book apart is the author’s background in medical ethics and health policy. The book explores the emotional, social, and financial impact of Alzheimer’s on the person and their family.  With currently very limited medical treatment for most persons with Alzheimer’s, Dr. Karlawish talks about social treatments, care plans, family engagement, and state of the art memory care programs.  His background in ethics frames his discussion of the harmless deceptions caregivers often engage in to ease the distress of a person living with Alzheimer’s.   

The book explores the origins of the Alzheimer’s Association, the inherent stresses between seeking funding for caregiving, and research for prevention, treatment, or cure for Alzheimer’s.  Funding for both research and care are huge needs, and the book chronicles the success and failure of efforts to obtain needed funding and discusses the ongoing need for funding.  

Underlying the book is a humanist, ethics perspective of treating every person with respect.  Programs like the Penn Memory center provide compassionate diagnosis and care options for the person living with dementia and their family members.  While research continues, we must foster quality of care and quality of life for persons with dementia and their caregivers. The thoughtfulness of the approach of Dr. Karlawish and his colleagues, is why people wait six months for an appointment to see them. 

I recommend this book for anyone who wants to more fully understand Alzheimer’s.  The book not only looks at current state of the art care and treatment options, it also explores the political and social history of how we got to the point we are at, and takes a glimpse into what we might see in the future.  Published by the St. Martin’s Press division of Macmillan, the book was released February 23rd, 2021, and is available from booksellers everywhere, in both hardcover and e-book.  How good is it?  This review was done from an e-book copy and I have a hard cover on order. I need this one on my reference shelf – I hope you find that you do also.  

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