The Vanishing Family: Your Brain, Dementia, Genetic Risk and the Question...Would You Want to Know? With Robert Kolker
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 storyThe family's rare genetic form of frontotemporal dementiaWhat it means to face a 50 percent chance of inheriting a disease-causing mutationThe agonizing decision of whether—or whether not—to undergo genetic testingWhy some family members chose to know their genetic status while others chose not toHow the younger generation faces questions about marriage, children, IVF, and genetic riskWhy frontotemporal dementia can look so different from the dementia most people associate with Alzheimer’sHow personality, behavior, and social awareness can change while memory remains intactThe 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 caregiverWhy caregiving can become isolating—and why caregivers may need far more supportThe challenge of developing treatments for rare diseases when there aren't enough patients to make traditional drug development financially attractiveWhy rare genetic diseases may offer important clues for understanding more common neurological diseasesThe emerging scientific interest in tau and its potential connection to future dementia treatmentsThe complicated question of whether having more genetic information actually gives us more controlAnd what Bob learned from this family about living in the present and spending our energy on what really mattersOne 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 KolkerBob 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.comGratitude to our amazing sponsors: Quince, Berkeley Life, Vinted, Jones Road Beauty, Warby ParkerAs Always, Untangle is the podcast from Muse, the brain sensing headband. Go to choosemuse.com/untangle and use code untangle15 for your discount. NEW: NEW: You can pre-order the book The Questions That Make A Life, featuring the best of our Untangle guests, by Patricia Karpas.Now on Amazon: https://www.amazon.com/Questions-That-Make-Life-Required/dp/B0HHMFBGBM/ref=sr_1_1?crid=2F9Y0J4VRF3U8&dib=eyJ2IjoiMSJ9.2qyZZW4cR-h-puqXomsUaTW5uA5Zm9ujmTixdiGDQuUewL7FvO1YV046kntTG8CgUkaF43gkXOvS4-krFOirLok0pi5a3z5P0V-X_uY2OnkLyt6bk_NGiQVR5qUoXApJOTU9tmkfbuIJyxnjCibfA5TH7ALhs-oglpLW4ImtIFQp8OGDDRDFW1jgzuaHFbs7nWtY-i3qUihonew6L-3Kw6SqwpJpRN9XNxB7jUKsoFk.V7f6pO_BsTLEu8mBvm482Oak1nryHBXbj8ZYXBQe_Y4&dib_tag=se&keywords=the+questions+that+make+a+life&qid=1790960931&sprefix=the+questions+that+make+a+lif%2Caps%2C192&sr=8-1 See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
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