What would you do if you had a 50 percent chance of developing a devastating genetic form of dementia—and you could take a test to find out whether you carried the mutation?
In this episode, Journalist and Bestselling Author Robert Kolker joins me to talk about his newest book The Vanishing Family, Love, Fate and the Quest to End Dementia and the extraordinary family at the center of his story.
The family lives with an inherited form of frontotemporal dementia (FTD), a disease that can dramatically alter personality and behavior while leaving memory relatively intact in the early stages. Their experience raises enormous questions—not only about dementia and medical research, but about identity, family, parenting, caregiving, and how we choose to live when we cannot know what the future holds.
In this conversation, we explore:
- Why Bob Kolker became fascinated with this family's story
- The family's rare genetic form of frontotemporal dementia
- What it means to face a 50 percent chance of inheriting a disease-causing mutation
- The agonizing decision of whether—or whether not—to undergo genetic testing
- Why some family members chose to know their genetic status while others chose not to
- How the younger generation faces questions about marriage, children, IVF, and genetic risk
- Why frontotemporal dementia can look so different from the dementia most people associate with Alzheimer’s
- How personality, behavior, and social awareness can change while memory remains intact
- The question of whether a person with advanced dementia has truly “vanished”
- What Bob learned about the personalities and skills that can make someone an effective caregiver
- Why caregiving can become isolating—and why caregivers may need far more support
- The challenge of developing treatments for rare diseases when there aren't enough patients to make traditional drug development financially attractive
- Why rare genetic diseases may offer important clues for understanding more common neurological diseases
- The emerging scientific interest in tau and its potential connection to future dementia treatments
- The complicated question of whether having more genetic information actually gives us more control
- And what Bob learned from this family about living in the present and spending our energy on what really matters
One of the most powerful ideas in our conversation is that dementia isn't necessarily an on/off switch—and that a person doesn't simply “vanish” when their memory or personality changes. Bob talks about the possibility of recognizing the person who remains, even amid profound neurological change.
He also reflects on how the experience changed his own life: he plans less, lives more in the present, and tries not to waste energy on things that ultimately don't matter.
About Bob Kolker
Bob Kolker is an award-winning journalist and author whose work often explores families confronting extraordinary circumstances. In this conversation, he brings together deeply reported family stories with questions about genetics, neuroscience, dementia, caregiving, and the future of medical research.
Resource: Robertkolker.com
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