The Vanishing Family: Love, Fate and the Quest to End Dementia

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‘This is a triumph of reporting, and an absolutely compelling exploration of neuroscience and genetics. At its heart, though, it’s a poignant, heartfelt story about family and how love sustains even in the most difficult circumstances. Like Kolker’s other work, it is full of deep humanity. It’s a beautiful book’ Susan Orlean, bestselling author of The Orchid ThiefFrom the #1 New York Times bestselling author of Hidden Valley Road comes the heart-wrenching journey of a family facing a tragic genetic destiny, set against the scientific search for hope for all of us who fear losing our selves to dementia. None of us knows how our story will end, or what shape we will be in by the time the end comes. Here, however, is the story of a family filled with people who do know – or could know. Each family member has a 50-50 chance of inheriting a genetic mutation that causes frontotemporal dementia (FTD), a cruel disease that emerges in middle age. As more and more family members begin to show symptoms, The Vanishing Family offers an intimate exploration of the family’s emotional journeys and relationships, and the difficult decisions they face as they confront their genetic fate. Through first-rate reporting and compassionate storytelling, Kolker brings to life the experiences of those in the family who are afflicted by FTD and those who are not. Interwoven with this devastating narrative is the relentless search for a cure-and a glimmer of hope that FTD research could also help us understand more common forms of dementia like Alzheimer’s. The decision of whether to get tested for the genetic mutation looms over all members of the family, surfacing a haunting question: if you were going to lose yourself-in a year, or two, or ten-would you even want to know?The Vanishing Family is a powerful allegory for our anxieties about aging and the unknown, offering a roadmap through the unthinkable.