Reviewed by Tucker Coombe
The Vanishing Family: Love, Fate, and the Quest to End Dementia
by Robert Kolker
Quercus
October 2026, 368 pages, Paperback, ISBN-13: 978-1529438574
The Vanishing Family: Love, Fate, and the Quest to End Dementia describes a family affected by a “confoundedly rare,” genetically linked brain disease called frontotemporal dementia, or FTD. Unlike Alzheimer’s disease, FTD affects its victims “in the prime of life,” often in their forties. Children of those with FTD have a fifty percent chance of inheriting the disease: five of Jean’s children would succumb to the dementia and, unknowingly, would pass it on to their own sons and daughters.
Progress toward an FTD cure, Kolker shows, has been agonizingly slow. Historically, dementia research has focused on Alzheimer’s disease, which affects some fifty-five million people worldwide. As well, this particular dementia –– even within a close-knit and attentive family –– often eludes detection. “What happens with FTD is so unlike what’s commonly thought of as dementia that it’s quite often mistaken for something else, like depression or schizophrenia,” the author writes. In this family, “[t]he symptoms were subtle at first –– missed appointments, an uncharacteristic aloofness, an end to deep conversations. Slowly, impulse control and emotional depth became things of the past.”
The Vanishing Family is absorbing and suspenseful. Kolker writes with the incisive quality of a skilled journalist but with a compassion reminiscent of a close family friend.
Part of what distinguishes this work from other medical sagas of neurodegenerative disorders is the author’s deft depiction of family members, with particular focus on the bonds between Jean’s children. Barb, for example –– long before the onset of her mother’s FTD symptoms –– perceived herself as “the blond, adorable little good-luck charm of eight older brothers and sisters[,] … most of [whom] seemed like rock stars,” Kolker writes. Early on, we feel invested in the lives and well-being of these siblings. The author identifies each by their first name but uses pseudonyms for their children. He never reveals the family’s last name.
Kolker uses the observations of siblings, spouses, and children to describe the dementia’s progression through the family. One of the ironies of FTD, he notes, is that “those who have it are so unselfconscious that they seem to suffer less than the loved ones around them, watching them change.” In one vivid depiction after the next, Kolker shows the frustration inherent in trying to protect those who cannot recognize their own illness. He also demonstrates how denial –– and a desperate wish for a return to normalcy –– impedes diagnosis: too often, when a mother begins neglecting her children, the culprit is assumed to be a failing marriage or simple exhaustion.
It was Jenny who first noticed “something off” about her older sister Christy –– a bright, ambitious pharmaceutical executive who by her mid-thirties was living comfortably in New Jersey with her husband, two young children, and a nanny. When Christy lost her job –– for reasons unspecified –– she neither searched for a new position nor busied herself with volunteer activities. She paid scant attention to her children and barely noticed as her husband drifted away, then filed for divorce. She was unconcerned when a pipe burst, leaving the household without running water. Before long, Christy’s children were removed from her care following allegations of neglect. That winter, police stopped by the house for a wellness check following a blizzard. There, amidst piles of dirty laundry and counters covered in moldy, maggot-y food, sat Christy. “Her hair was ratty and tangled, her clothes [were] in tatters[,]” and she appeared “oblivious to the storm and everything around her,” writes Kolker.
The author narrates much of the story through the eyes of Barb, the first to connect the dots as sibling after sibling began exhibiting strange behaviors. Here, Kolker describes one such moment of realization: “[Barb] stared at the woman in front of her –– a sister, once a friend and role model and compatriot –– and started spinning out scenarios. Mary was only in her forties. This was only going in one direction. And if it was happening to her, it could happen to any of them.” Spurred by panic and a newfound sense of purpose, Barb shared the plight of her family with researchers in the medical community.
Some of the book’s most affecting scenes describe children left in the care of an affected, but undiagnosed, parent. For many readers, these depictions bring to mind Kolker’s highly acclaimed work, Hidden Valley Road: Inside the Mind of an American Family (2020). This earlier book, a searing account of a family genetically predisposed to schizophrenia, tells of children who were routinely subjected to horrific acts of violence, including sexual violation, at the hands of their mentally ill brothers.
Barb and her siblings, by contrast, demonstrate an enduring devotion to one another. Sue, in a spontaneous and momentous act of generosity, moves in with Christy upon learning of her sister’s condition –– and never leaves. Kolker writes: “After nearly thirty years, Sue and Christy’s life together felt almost collaborative, completely enmeshed, like one life lived for each other.” Christy, unable to talk, feed herself, or manage her own hygiene, was content to spend much of her day watching television. In the evening the sisters would take a slow walk through the neighborhood, Christy occasionally wandering into the homes of neighbors. Now in an advanced state of dementia, she appeared “unfailingly sunny and bright,” the author writes, and greeted visitors with a grin and a nose-to-nose touch.
Before a cure for FTD can be found, Kolker writes, a certain critical mass of FTD patients must be identified. But testing for the disease is a fraught issue: “’People don’t want to test for it because there’s no hope,’ [Barb] said. ‘But there’s no hope because people don’t test for it,’” Kolker writes. Barb herself found it almost unbearable to learn whether she carried the tell-tale FTD mutation. She waited a decade before being tested. Afterward, for a full year, she refused to open her mail and learn her diagnosis.
About the reviewer: Tucker Coombe writes about memoir and nature from Cincinnati, Ohio and Chatham, Massachusetts. Her work has been published in Brevity, The Rumpus, and Los Angeles Review of Books. In her spare time she trains dogs, keeps bees, and gardens with a focus on native plants and wildlife.