Would You Want to Know? A Family’s 50% Chance of Inheriting Dementia, with Robert Kolker
Would you want to know if you had a 50% chance of developing an inherited form of dementia?
In this episode of Causes or Cures, Dr. Eeks talks with #1 New York Times bestselling author Robert Kolker about his new book, The Vanishing Family: Love, Fate, and the Quest to End Dementia.
The book follows a Pennsylvania family across generations as they confront a rare inherited form of frontotemporal dementia (FTD) associated with a mutation involving tau. For family members, genetic testing can answer an extraordinary question: Did I inherit the mutation or not? But knowing the answer can affect virtually everything that follows—relationships, having children, plans for the future and how someone interprets changes in their own behavior.
Eeks and Robert discuss the very different ways family members approached genetic testing; whether getting older without symptoms means you're in the clear; having children when there's a chance of passing on the mutation; and the unsettling way FTD can first appear as changes in personality, judgment and behavior rather than something obviously recognizable as neurological disease.
They also get into some of the bigger questions raised by the book: How much of who we are is our brain? Would you want the option to end your life before a degenerative disease changed who you were? Can lifestyle meaningfully alter the course of a strongly inherited dementia? And what can medicine actually offer someone who learns today that they carry one of these mutations?
Finally, they discuss why researchers are so interested in this family's rare form of FTD. The mutation affects tau, a protein also implicated in Alzheimer's disease, making families like this scientifically valuable for understanding how dementia develops and potentially how it might someday be prevented or treated.
Robert Kolker is a contributing writer at The New York Times Magazine and the #1 New York Times bestselling author of Hidden Valley Road, which was an Oprah's Book Club selection and a New York Times Book Review Top 10 book of the year. He is also the author of Lost Girls. The Vanishing Family is published by Doubleday on September 29, 2026.
The Vanishing Family — official publisher page
*Robert Kolker photo credit: Jeff Zorabedian
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