In his new book, “The Vanishing Family: Love, Fate and the Quest to End Dementia,” Robert Kolker chronicles three generations of a family grappling with just such a cruel reality.
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Kolker → end → reality
The author tells their dramatic story while also interweaving a broader one — how the medical understanding of dementia has progressed in fits and starts over the past 150 years and how, in the last decade, scientists have come to recognize that families like the one Kolker profiles may be key to finding a cure for all types of age-related brain impairment.
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Kolker → tell → impairment
The resulting book is an unlikely page-turner, a dual-track narrative by turns absorbing and wrenching, informative and inspiring.
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book → result → turns
It’s a worthy follow-up to Kolker’s 2020 best-selling “Hidden Valley Road: Inside the Mind of an American Family,” about the descent into schizophrenia of six members of the Galvin family, and the genetic origins of that terrifying disease.
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It → ’ → disease
In both books studying the science “was in the service of understanding the people, of walking in their footsteps,” Kolker told The Post.
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Kolker → study → Post
Contacted four years ago by members of this family (their last name is not provided for privacy reasons) the author agreed to do a deep dive into their history just as he did with the Galvins’.
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he → contact → Galvins
Barb, 50, is the anchoring figure in “The Vanishing Family.”
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Barb → anchor → Family
She was born the youngest of nine children of a prosperous couple, Ollie and Jean, who lived in the suburbs of Pittsburgh.
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who → bear → Pittsburgh
Still at home when her much-older siblings had left, Barb witnessed first-hand the breakdown of her parents’ marriage and the drastic changes in her mother.
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Barb → leave → mother
Once energetic and attentive, Jean, while still in her 50s, withdrew from the world and spent her days sitting in front of the television, smoking and drinking.
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Jean → withdraw → television
She hid from everyone the symptoms of breast cancer, and after she passed away from that disease at age 62, Barb and her siblings concluded that their mother’s unhealthy lifestyle brought about her death.
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lifestyle → hide → death
Six years later, when Barb was attending college, Christy, the second oldest in the family, and a successful executive with two children, underwent an eerily familiar transformation.
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Christy → attend → transformation
Her marriage ended, and Christy, then age 44, stopped taking care of herself.
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Christy → end → herself
She refused to make meals, acted strangely in social situations, could no longer handle her job.
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She → refuse → job
The situation reminded Barb of what had happened with her mother: Both women’s marriages had failed and they lost interest in life.
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they → remind → life
Was there some strain of melancholia that ran in the family?
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that → run → family
Barb’s next oldest sister, Jenny, pushed for a more definitive diagnosis.
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sister → push → diagnosis
Eventually, Christy was told she suffered from Pick’s disease, a form of frontotemporal dementia that occurs in people under age 65.
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that → tell → age
Most cases of Pick’s are “sporadic,” meaning not inherited.
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cases → mean → Pick
Nonetheless, in 2001, Jenny contacted an expert at the University of San Francisco where scientists were beginning to link certain genes to dementia.
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scientists → contact → dementia
She, Barb, Christy and another sister, Sue, who gave up her career to take care of Christy, submitted DNA samples.
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who → give → samples
After hearing nothing back from the lab, they assumed they were in the clear.
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they → hear → clear
As the author makes clear throughout the book, denial is a frequent response to mysterious medical events.
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denial → make → events
“Of course, there is a difference between failing to find a hereditary link to a rare disease and proving without doubt that the disease isn’t hereditary,” Kolker writes.
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Kolker → be → doubt
Four years later, Barb and her husband were living near Denver when they received an unexpected visit from her one of her older sisters, Mary, then 47.
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they → live → sisters
Mary couldn’t explain why she had come, did not extend everyday courtesies to Barb’s friends and family and spoke about her complicated profession in juvenile language.
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she → explain → language
“That weekend Barb saw it all — the same movie, playing again,” Kolker writes.
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Kolker → see → it
“The old Mary was disappearing, with nothing to replace her.”
For Barb that was the moment when she became convinced that Jean, Christy and Mary suffered from a genetic condition, and “we might all have it.
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we → disappear → it
In the suspenseful chapters that follow — which Kolker based on his lengthy interviews with numerous family members — Barb and her sisters piece together clues, including those offered by distant relatives, and consult experts.
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Barb → follow → experts
They eventually discover that a mutation on chromosome 17, V337M, which causes a rare form of early-onset FTD, runs in their family.
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which → discover → family
Offspring of those carrying the mutation have a 50/50 chance of inheriting it themselves.
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Offspring → carry → it
Everyone in the family thus has a choice: Should they take the test and learn if they will succumb to dementia while still in midlife?
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they → have → midlife
Thanks to Kolker’s intimate, empathetic writing, the fate of individual family members takes on great urgency.
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fate → take → urgency
The family pulls together to support and care for each other as the bad news unspools.
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news → pull → other
“I think every reader will naturally ask themselves if they had a crystal ball would they really want to know?” the author told the Post.
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author → think → Post
The scientific chapters of “The Vanishing Family” contain their own drama and poignancy.
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chapters → contain → drama
For most of history, dementia was considered a natural, generalized condition, evidence of a brain inevitably slowing down.
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brain → consider → history
Then, in the early 20th century, Dr. Alois Alzheimer identified unique brain abnormalities — amyloid plaques and neurofibrillary tangles of a protein called tau — present in the brain tissue of those who died with dementia.
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who → identify → dementia
By the 1970s Alzheimer’s was widely accepted as the leading cause of cognitive decline in the elderly, and many researchers fixated on the “amyloid cascade hypothesis” — the theory that the accumulation of plaque brought on the disease.
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accumulation → accept → disease
“It’s a story of group think, the kind that often happens in science,” Kolker explained to The Post.
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Kolker → ’ → Post
…and 9 more, not listed.
The Aporia
