Jason Karlawish is a physician and writer.
He researches and writes about issues at the intersections of bioethics, aging, and the neurosciences. He is the author of The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It and the novel Open Wound: The Tragic Obsession of Dr. William Beaumont. His essays have been published in The Wall Street Journal, The New York Times, Forbes, The Hill, The Los Angeles Times, The Philadelphia Inquirer, STAT, and The Washington Post. His STAT column Neurotransmissions examines the vast problem of dementia. A Professor of Medicine, Medical Ethics and Health Policy, and Neurology at the University of Pennsylvania, he is co-Director of the Penn Memory Center, where he cares for patients, and executive producer of the Age of Aging, a podcast that examines how to live well with an aging brain. He lives in Philadelphia.
‘What will I do with the time I have left?’: What it’s like to find out you might develop Alzheimer’s
New biomarker tests are raising existential questions for people who don’t yet display any symptoms of dementia
In 1976, at the dawn of the modern Alzheimer’s era, the neurologist Robert Katzman, champion of efforts to extract Alzheimer’s from senility and “normal aging,” concluded his short essay “The Prevalence and malignancy of Alzheimer’s disease” with this notably qualified call to action:
“In focusing attention on the mortality associated with Alzheimer disease, our goal is not to find a way to prolong the life of severely demented persons, but rather to call attention to our belief that senile as well as presenile forms of Alzheimer are a single disease, a disease whose etiology must be determined, whose course must be aborted, and ultimately a disease to be prevented.”
Now, some 50 years later, advances in biomarker-based diagnostics and therapies may have us at the dawn of his goal. His concern about prolonging the lifespan of a person living with severe stage dementia was prescient. People living in the vanguard of prevention — biomarker-positive and taking a drug that might delay time to dementia — share his concern about mortality.
Survival is an ambiguous good. What people fear isn’t the end of life, the demise of the animated body, but the demise of the mind. They think about their future: how to spend the time and money they have, and who to spend it with. The challenge for medicine and society, therefore, is how we can help them maintain quality of mind..….
The ACED tool
Why have thousands of psychologists, physicians, caregivers and social workers from all over the world requested a copy of the ACED? Because they know that to promote the well-being and dignity of a person with marginal capacity, the person needs an assessment of the capacity for everyday decisionmaking.