Author: Robert Kolker
Year published: 2026
Category: Adult nonfiction
Pages: 368
Rating: 4.25 out of 5
Location: (my 2026 Google Reading map): USA (MO, PA, OR, CA, NJ, WA, CO)
Summary: From 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 ourselves 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?
Review: I read Koljer's Hidden Valley Road (link to my review) with my virtual book group and found it interesting, though disturbing. I assumed this book would be similar, and I was right. I cannot imagine learning that my family had a defective gene that meant I had a 50/50 chance of dementia hitting in my early 40s. As I watch my parents' friends vanishing with Alzheimers and dementia, this book seemed especially poignant and relevant for me.
What I find most interesting is how different each person's dementia is (whether they have FDT or some other version). The family members don't lose their memories. Instead, their personalities change; they regress in age; they lose their empathy; they live in denial; they overeat; and more.
I cannot imagine knowing (eventually) that I and all my siblings and their children might have this disease that would hit in the early or mid-forties. To get tested, wait for the results, and then know what's coming. Or being the spouse, waiting to find out if you are going to "lose" your wife or husband (or children). Especially since people with FDT live into their 80s and 90s, so they can have the difficult behavior for 40 years or more. A negative result would bring relief and guilt.
This book is so well researched for both the family's story (about two-thirds of the book) and the science of the brain and dementia (about one-third, woven throughout the family story).
Challenges for which this counts:
- Alphabet (Title)--V
- Literary Escapes--Missouri
- Nonfiction--Health
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