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

by Robert Kolker

A family’s story alongside the search for answers about dementia

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AlbakiReads Editorial

A family’s story alongside the search for answers about dementia

Robert Kolker’s account connects the experience of a Pennsylvania family with a rare inherited form of frontotemporal dementia to the broader scientific effort to understand the disease. Across nine siblings, the family’s history raises questions about inheritance, caregiving, and how dementia can alter a person’s identity and relationships. The narrative also follows Barb’s search for a cure and traces research into whether this family’s genetic mutation could inform prevention or treatment efforts. Together, these strands frame dementia as both a personal family crisis and a subject of medical investigation.

Good fit for readers who enjoy

  • Readers interested in family-centered narrative nonfiction about dementia and caregiving
  • Readers interested in genetics and the scientific search for dementia treatments
  • Readers drawn to biographies and medical subject matter

Themes

Family and inheritanceDementia and identityCaregivingMedical research

Based on publisher information and book metadata.

Book overview

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home to see their beautiful, still-young mother fall under a gothic spell, changing into someone she didn't recognize: withdrawn, neglectful, uncaring.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.
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