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.
Jason Karlawish writes STAT’s Neurotransmissions column
If you have Alzheimer’s disease, who will take part in your care?
“A reader — I’ll call him Jack — recently asked my thoughts on his plans to pursue treatment with lecanemab for his mild cognitive impairment caused by Alzheimer’s disease. So we set up a call to discuss what it is like to live beset by the threat of Alzheimer’s disease but also the promise of a treatment to slow it.
Jack’s account of his neurologist’s workup and the many steps from diagnosis to anti-amyloid therapy seemed in order. As we explored the details, however, something felt out of order. The problem wasn’t what I was hearing; it was what I wasn’t hearing.
A very important character was missing.
Jack, who is a documentary filmmaker, had pursued his diagnosis and treatment entirely alone — attending solo his new patient assessment and every single appointment, test, and infusion visit. At no point did his doctor either ask Jack or encourage him to bring in Jill, his partner of many years. (Jack and Jill are the fictional names of real people)
His story illustrates the need for a new ethic and practice for the care of people with Alzheimer’s disease and other diseases that cause dementia. A person diagnosed with these diseases, at any stage, needs someone. Doctors must become adept in leading a conversation that they will initiate with one simple, ethically important question: Who will take part in your care?
To fail to ask this question, I think, is a failure to deliver what ought to be the standard of care….”
Click on “READ THE LATEST COLUMN” and learn how this simple question inaugurates a revolution in ethics and practice.
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.