One family's struggle with early dementia may lead us to a cure

Key Points:

• Robert Kolker’s new book, “The Vanishing Family: Love, Fate and the Quest to End Dementia,” chronicles three generations of a family affected by a rare genetic mutation causing early-onset frontotemporal dementia (FTD), highlighting the limits of healthy living in preventing some forms of cognitive decline.
• The family discovered a mutation on chromosome 17, V337M, linked to inherited FTD, which gives offspring a 50% chance of inheriting the disease, raising difficult decisions about genetic testing and confronting inevitable dementia.
• Kolker intertwines the family’s personal story with the evolving medical understanding of dementia, emphasizing how diseases like FTD can inform Alzheimer’s research, particularly regarding tau protein abnormalities.
• The book underscores the need for increased testing and awareness of rare dementias, as current diagnoses are often missed, and advocates for more research and drug development targeting tau and genetic mutations.
• “The Vanishing Family” is both an intimate family narrative and an informative exploration of dementia science, illustrating the human impact of these diseases and the hope for future treatments through patient participation in research.