By Varshini Chellapilla
“Imagine a healthcare system incapable of diagnosing whether increasing numbers of older adults with weight loss, vague pains and anemia have cancer and, if they did, incapable of treating their cancer and caring for their common complications, such as pain and fatigue. That’s the problem for funding older adults with memory loss. The system is broken and a correction is needed to remedy this.”
An excerpt from Penn Memory Center (PMC) Co-Director Jason Karlawish’s new book “The Problem of Alzheimer’s: How Science, Culture and Politics Turned a Rare Disease Into a Crisis and What We Can Do About It,” the paragraph summarizes the roadblocks faced by people with Alzheimer’s disease and caregivers as they navigate the healthcare system, as identified by Dr. Karlawish.
On March 18, Dr. Karlawish read an excerpt from his book and answered questions about the revolutionary moments of Alzheimer’s disease history, the names of experimental Alzheimer’s drugs, and his personal evolution as a physician at a virtual launch event hosted by PMC to commemorate the release of the book.
Barbara Grosz, a Higgins Professor of Natural Sciences at Harvard University, served as co-host of the event. Her mother was a patient of Dr. Karlawish for nearly a decade, and since the first assessment, Dr. Grosz said that she learned about respect for autonomy and an understanding of her mother’s disease and needs through Dr. Karlawish.
In the United States, an estimated 6.2 million older adults have Alzheimer’s disease as of 2021, according to the Alzheimer’s Association. Additionally, over 11 million people provide unpaid care to loved ones living with Alzheimer’s disease and other related dementias.
Dementia was first associated with senility until, as Dr. Karlawish came to realize, Alois Alzheimer, Oskar Fischer and Max Bielschowsky discovered that what was called senility had similarities with the mysterious, rare, early-onset memory issues that they had been studying. It was a discovery akin to modern science and Dr. Karlawish described it as a “revelatory moment” in his own writing.
“As powerful science is, we also saw, in this past year, how fragile science is,” Dr. Karlawish said. “Namely when it is in the hands of society, culture, the politicians. And, that is what happened with Alzheimer’s disease.”
The history of research and care of Alzheimer’s disease has been molded by the political and cultural events of the twentieth and twenty-first centuries. Dr. Karlawish explained at the event how Germany’s drastically changing political landscape in the 1910s halted the work of the neuropathologists and clinicians studying the link between early discoveries of dementia and Alzheimer’s. In America, the dominance of Freudian theories joined later by lack of awareness of the disease contributed to the current crisis of Alzheimer’s.
A particular line that stood out to Dr. Grosz from the book made her think about the ways in which the healthcare system has not been designed to support the respect and care for older adults in the community — “Alzheimer’s disease is a disease of autonomy.”
“What makes this disease fully a disease is that it is an assault on our ability to live our lives as we, as individuals, want to,” Dr. Karlawish said. “And, it wasn’t until the late twentieth century that that value became widely respected. And I think that was the necessary cultural completion to make this a disease.”
Dr. Karlawish and Dr. Grosz also discussed the emphasis on maintaining a balance between care and cure of the disease in the book. In the early days of the advocacy organization Alzheimer’s Association, there was a struggle between improving care without losing focus on studying the disease, and finding a cure without emphasizing the raising of awareness.
“It would create this weird tension that still haunts the field,” Dr. Karlawish said. “I would argue, now, I think we’ve arrived. I think awareness has been raised. It is probably time to walk away from that conflict and, as I point out in the book, recognize how far we’ve come with recognizing that this is a problem, and it’s a disease, but it’s a complicated disease.”
For Dr. Grosz, the “scholar-like history” chronicled in the book — from the quiet signing of the National Alzheimer’s Project Act by President Obama to the stigma of dementia that pours into the lives of patients and loved ones — helped readers navigate the progression of research and care as it came to be in the twenty-first century. Dr. Karlawish spent countless hours reading the meeting minutes of the Alzheimer’s Association Board of Directors, looking through medical archives, and interviewing patients and caregivers for their own personal journeys.
“I have a very fond memory of — this is back when we used to travel and I was at one of the Alzheimer’s meetings in the evening — sitting at a bar at a hotel, reading these PDFs of the Alzheimer’s Association’s Board of Directors meticulously,” Dr. Karlawish said.
He also expounded on the use of technology in the care for people living with Alzheimer’s disease and the importance of supporting caregivers through necessary policies. Toward the end of the event, Dr. Karlawish answered questions from audience members about the different presentations of Alzheimer’s disease, public representation of dementia, and the effect of the pandemic on patients and caregivers.
“[The book] is amazing in its scope,” Dr. Grosz said. “A wonderful, wonderful tapestry, woven from many threads, interweaved stories, that gets you really a good picture of today’s Alzheimer’s problem. There’s history, there’s biography, there’s patient stories, there’s the quagmire we’re in. […] It serves this important foundational setting that imparts a broad understanding of what can help us to figure out what to do for friends and family with Alzheimer’s disease, and also tells us what we, as a society, needs to do.”
“The Problem of Alzheimer’s: How Science, Culture and Politics Turned a Rare Disease Into a Crisis and What We Can Do About It” was published on Feb. 23 and is now available to order on jasonkarlawish.com.