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 it’s like to live with cognitively unimpaired Alzheimer’s disease
Being diagnosed with ‘pre-clinical’ Alzheimer’s feels awfully clinical, people say
What is it like to have asymptomatic Alzheimer’s disease?
The answer’s obvious, isn’t it? It is like nothing. It’s a silly question, really. How could living without symptoms — the vexing troubles with concentration, word finding, recalling new facts, the loss of a mental map — be an experience of something?
Like most short and simple answers, particularly when the subject is Alzheimer’s, the obvious answer’s wrong.
For several years I’ve studied the experiences of people living with what someday may be called asymptomatic or cognitively unimpaired Alzheimer’s disease. Much of this work involved talking to people who have neither dementia nor mild cognitive impairment (MCI), but they do have evidence of Alzheimer’s disease pathology. I focused on people who learned their amyloid PET scan shows “elevated amyloid.” My research colleagues call them “biomarker positive” and categorize them as having “pre-clinical Alzheimer’s disease.”
I’m not ready to diagnose and label them as patients. Not quite because I’m waiting on the results of my colleagues’ studies, whose results could both validate this new stage of Alzheimer’s disease and discover a treatment for that stage (I’ll say more about these studies later).
The key discovery my colleagues and I have made is that though these people may be asymptomatic, they do have a disease experience. Though they aren’t ill, compared to before they learned their amyloid biomarker result, they feel different. These feelings are animated by changes in how they interpret memory lapses, ponder present and future options, and relate to other people, especially family, friends, and co-workers.
As one woman who learned she had elevated amyloid explained to me, “It’s less about medical than about my personality. A colonoscopy isn’t going to change who I am. This is my brain involved.”
This is the first of two essays on what life is like living at biomarker-defined risk of dementia.….
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.