The Vanishing Family
Love, Fate, and the Quest to End Dementia
-
- Pre-Order
-
- Expected Sep 29, 2026
-
- $15.99
Publisher Description
From the #1 New York Times bestselling author of Hidden Valley Road comes the heart-wrenching journey of a family facing an unthinkable destiny, whose flawed genetic code might hold the long-sought key to a cure for dementia.
In the idyllic American town of Pleasant Hills, Pennsylvania, there lived a family with nine siblings, the youngest a girl named Barb. As the older children headed off to college and started their lives, only Barb was home to see their beautiful, still-young mother fall under a gothic spell, changing into someone she didn’t recognize: withdrawn, neglectful, uncaring. Thus begins The Vanishing Family, journalist Robert Kolker’s superb follow-up to Hidden Valley Road (“Deeply compassionate and chilling,” wrote The Washington Post). This family, we learn, has a genetic mutation that causes dementia, but with an especially cruel twist. As early as their forties, formerly loving parents and hard-driving executives will lose their jobs, have affairs, take up drinking—shed all inhibitions and sense of responsibility—and become people their families hardly know. Their former personalities seem to vanish—and there is a fifty-fifty chance that it will happen to their children, too.
The Vanishing Family unfolds like a heartbreaking thriller as the siblings begin to realize that what happened to their mother is happening to them: first one, then two, three, four, and more begin to change. Sue, in search of a calling, finds her place in caring for the others. Barb sets out to find a cure. Alongside their story, Kolker weaves in the dramatic scientific fight against dementia; after decades of blind alleys, this this family’s rare form of FTD (frontotemporal dementia) might lead to a breakthrough in the prevention and treatment of all dementia—including the scourge of Alzheimer’s disease. Moving, intimate, unexpectedly hopeful and redemptive, The Vanishing Family is an enthralling narrative about one family’s fate, and a medical detective story that speaks to all of us who fear losing ourselves at the end.
PUBLISHERS WEEKLY
Journalist Kolker (Hidden Valley Road) delivers a moving account of one Pennsylvania family's struggle with a rare inherited form of frontotemporal dementia, a devastating neurodegenerative disorder that gradually erodes personality, judgment, and language. Nine siblings watched as their mother, Jean (the family's last name is withheld), once put-together and responsible, became depressed and an alcoholic in her 40s, neglecting to care for the younger kids still at home. Several of the siblings grew up and faced a similar fate—formerly hardworking executives and present parents shed their sense of responsibility, lost jobs, had affairs, and drank. Eventually, the family discovered the source of the problem: a genetic mutation that has a 50% chance of being passed on to one's children. In addition to showing how the youngest daughter, Barb, and her family grapple with the emotional and physical toll of the illness and its implication for future generations, Kolker chronicles the emergence of frontotemporal dementia research and how tools like gene-editing and IVF genetic screening offer new hope to families like Barb's. Throughout, Kolker skillfully translates complex neuroscience into accessible prose and balances scientific discovery with intimate family drama. His compassionate reporting illuminates the ethical dilemmas surrounding predictive genetic testing while underscoring the profound impact of neurodegenerative disease on patients and their loved ones. It's a powerful examination of inheritance, resilience, and the human cost of medical uncertainty.
