A Family's Struggle with Frontotemporal Dementia Highlights Genetic Risks

An American family is navigating the profound heartbreak of frontotemporal dementia (FTD), a less commonly known form of dementia that affects personality and behavior, as detailed in Robert Kolker's book, 'The Vanishing Family.' The disease typically strikes in middle age, leading to a loss of ability to maintain employment, care for children, manage household tasks, and attend to personal hygiene.

A specific genetic mutation places Barb's family members at a 50/50 risk of developing FTD. Barb's mother, Jean, was affected by the disease, and one of her sisters, Christy, began showing symptoms in her 30s. By her 40s, Christy's personality had significantly changed. Two other sisters, Jenny and Mary, along with their brother, would also later develop FTD.

The manifestations of the disease ranged from darkly comedic to deeply distressing. In one instance, Christy's daughter brought a boyfriend home, and Christy fabricated a story about David Hasselhoff impregnating her daughter. In a more severe episode, police responding to a welfare check found Christy alone in a home filled with unsanitary conditions.

Due to its rarity, FTD does not attract the same level of pharmaceutical research interest as Alzheimer's disease. Research has focused on developing genetic tests to identify who carries the mutation. Barb grappled with the decision to take the test, ultimately discovering she does not carry the gene. The narrative explores the difficult dichotomy of either possessing the genetic predisposition or witnessing loved ones succumb to the disease.

Kolker's work is described as a sensitive and humane chronicle of a family confronting a cruel fate.