Jason Karlawish on the science and history of Alzheimer’s

The the co-director of the Penn Memory Center outlines the medical, social, and ethical challenges that surround Alzheimer’s disease.

Jason Karlawish is a professor of medicine, medical ethics and health policy, and neurology, and a widely sought speaker on issues such as informed consent, voting rights, and financial protections for people living with dementia. Among his titles: senior fellow of the Leonard Davis Institute of Health Economics and the Penn Center for Public Health Initiatives, fellow of Penn’s Institute on Aging, director of the Penn Program on Precision Medicine for the Brain, and co-associate director of Penn’s Alzheimer’s Disease Core Center.

Jason Karlawish
Image: Candace diCarlo

Karlawish describes himself as both a physician and a writer. “Science is fragile,” says Karlawish, reflecting on the complex story he tells in his 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.”

“It’s powerful, but it’s incredibly fragile,” he says. The narrative weaves back and forth in time to describe how Alzheimer’s disease was discovered, forgotten, rediscovered, and elevated to a crisis. Karlawish writes about how politics and history framed, influenced, and diverted the scientific research agenda.

Issues of autonomy and self-determination are a major theme of Karlawish’s research. He has done pathbreaking work on caregiving, capacity assessment, and voting rights for people living with dementia. In 2015, he introduced the concept of “whealthcare,” calling for financial institutions to identify and protect customers with cognitive impairment from fraud, missed payments, and other potential mishaps.

“Several years ago, I realized that I’m fully alive because of Alzheimer’s disease,” Karlawish says. “The triumph of self-determination for all adults has allowed me to live as I am. In the case of being gay, it’s about simply living one’s life as one determines it. In the case of Alzheimer’s disease, we see how painful it is to lose that self-determination.” In both instances, he says, “caring relationships” are an important part of the equation.

“I had a rough time in medical school because medical school, especially then, was a trade school.” When he expressed an interest in ethics, he was told “there was not a career to be had in that space.” During the bioethics fellowship, he moonlighted at a chronic ventilator unit, which raised ethical conundrums of its own. “These people were alive, but chronically ill and dependent on the care of others, both human care and machine care,” he recalls. “And I became fascinated with [the question of], ‘Why did this happen to them?’”

Before the early 20th century, Karlawish writes, the medical profession regarded “senile dementia” as an unfortunate consequence of normal aging, to be endured rather than cured. “As the twentieth century ended, the disease of the century remained a crisis without a national plan to address it,” he writes.

One of Karlawish’s arguments in “The Problem of Alzheimer’s” is that second-wave feminism, by expanding women’s career options, made the problem of Alzheimer’s more visible and more pressing. “One way you could address the Alzheimer’s crisis is if you created a permanent labor class of implicit caregivers whose job is to just take care of these older adults who are forgetful,” he says, referring to the prospect of women leaving the labor market to provide unpaid home care. In that case, he says, dementia would once again disappear from the public sphere, though the suffering it caused would remain.

With medicine still largely helpless, Alzheimer’s care entails an array of social, psychological, and environmental interventions that Medicare mostly won’t reimburse and that aren’t routinely available, Karlawish writes.

This story is by Julia M. Klein. Read more at The Pennsylvania Gazette.