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
“As a dementia specialist, I think of my work as that of a writer. To diagnose a patient, I write the story of their problems, embellished with an exam, tests of cognition, and brain scans that show that organ’s structure and function. If this story nicely matches the textbook description of a disease that causes dementia, it’s a diagnostic story, what doctors call “a classic case.”
Barbara was one of my classic cases of the “amnestic variant” of dementia caused by Alzheimer’s disease. Classic because at her new-patient visit with me at the Penn Memory Center, her and her daughter’s vivid stories nicely matched how Alzheimer’s typically unfolds, beginning with annoying problems with memory. She repeated questions and accounts of recent events (that’s the amnestic part — forgot the answer, forgot she already told you) and later developed problems with multitasking. She was no longer able to organize the household finances. Preparing a meal was a challenge. Her brain MRI showed notable loss of tissue in the medial temporal lobes, regions of the brain wherein the seahorse-shaped hippocampi nestle, a brain structure critical to forming new memories.
Notably, even her classic case was inflected with uncertainty. She had “probable Alzheimer’s disease.” It was probable because I couldn’t tell her and her daughter with certainty that Alzheimer’s was the cause of her dementia. Rather gruesomely, only after her death, when a pathologist examined her brain, could I see the disease.
Diagnostic biomarker tests are beginning to cast out this uncertainty. What’s notable is how they are also changing how patients and caregivers talk about living with their disease. Their stories are deep, personal reflections about what it is like to know the disease in their brain. These different feelings add up to different illness experiences. Over time, I think, those many experiences will change how cultures talk about dementia. To speak like a critic, they’ll deconstruct dementia.
Note that I described Barbara in the past tense: She “was one of my classic cases” of dementia caused by Alzheimer’s. “Was” not because she died (as I write this, she enjoys playing classical music on the piano and the company of her children and grandchildren). “Was” because a few months ago, I undiagnosed her of Alzheimer’s disease.…..”
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The ACED tool
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