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

THE NEW YORK TIMES BOOK REVIEW EDITORS' CHOICE • 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.
“A gripping real-life horror story of dementia, love and grief. . . . Kolker displays his genius for the immersive detail.” —The New York Times Book Review
“Robert Kolker's new book is at once a tragedy, a mystery and a testament to a family's love.” —NPR
"With his breathtaking chronicle of a family with a rare form of dementia, Robert Kolker claims his title as the Ann Patchett of nonfiction family dramas." —BookPage (starred review)
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home to see their beautiful, still-young mother fall under a gothic spell, changing into someone she didn’t recognize: withdrawn, neglectful, uncaring.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 heartbreaking follow-up to his beloved Hidden Valley Road. 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 with dramatic intensity 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 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, 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.