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The Vanishing Family: Love, Fate, and the Quest to End Dementia
Not yet published
Expected 29 Sep 26From the #1 New York Times bestselling author of Hidden Valley Road comes the heart-wrenching journey of a family facing a tragic genetic destiny, set against the scientific search for hope for all of us who fear losing our selves to dementia
In the idyllic American town of Pleasant Hills, Pennsylvania, 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Barb was home to see their beautiful, still-young mother fall under a gothic spell, changed into someone they don’t withdrawn, neglectful, uncaring.
Thus begins The Vanishing Family, journalist Robert Kolker’s stunning follow-up to Hidden Valley Road (“Deeply compassionate and chilling”, Washington Post). The family, we learn, has a gene mutation for dementia, but with a special 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. And there is a 50/50 chance that it will happen to their children, too.
Kolker follows the family over years as they realize that what happened to their mother is happening to first one, then two, three, four, and more begin to change. The Vanishing Family unfolds like a heartbreaking thriller, as the siblings struggle to cope with terrifying fates. Sue, the black sheep of the family, finds a calling in caring for the others. And Barb sets out to find a cure. She learns that their mutation for a rare form of FTD (frontotemporal dementia) might help scientists understand and cure all dementia, including the scourge of Alzheimer’s disease.
Moving, intimate, hopeful, redemptive— The Vanishing Family is a medical detective story about an unforgettable family that speaks to all of us who wonder how our own stories will end.
In the idyllic American town of Pleasant Hills, Pennsylvania, 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Barb was home to see their beautiful, still-young mother fall under a gothic spell, changed into someone they don’t withdrawn, neglectful, uncaring.
Thus begins The Vanishing Family, journalist Robert Kolker’s stunning follow-up to Hidden Valley Road (“Deeply compassionate and chilling”, Washington Post). The family, we learn, has a gene mutation for dementia, but with a special 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. And there is a 50/50 chance that it will happen to their children, too.
Kolker follows the family over years as they realize that what happened to their mother is happening to first one, then two, three, four, and more begin to change. The Vanishing Family unfolds like a heartbreaking thriller, as the siblings struggle to cope with terrifying fates. Sue, the black sheep of the family, finds a calling in caring for the others. And Barb sets out to find a cure. She learns that their mutation for a rare form of FTD (frontotemporal dementia) might help scientists understand and cure all dementia, including the scourge of Alzheimer’s disease.
Moving, intimate, hopeful, redemptive— The Vanishing Family is a medical detective story about an unforgettable family that speaks to all of us who wonder how our own stories will end.
368 pages, Hardcover
Expected publication September 29, 2026
About the author
Robert Kolker
3 books1,073 followersI'm the author of Hidden Valley Road: Inside the Mind of an American Family (Doubleday, 2020) and Lost Girls: An American Mystery (Harper, 2013). My latest book, The Vanishing Family: Love, Fate, and the Quest to End Dementia, is on sale 9/29/26.
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June 7, 2026Very excited to read Kolker's latest, which takes on dementia where his last book (Hidden Valley Road: Inside the Mind of an American Family) featured a family afflicted by schizophrenia. Perhaps if I review this one on my channel, I can be spared a repeat of last time and NOT get verbally accosted by one of the subjects of the book in my comments section.
The stories I have after over a decade on YouTube, I swear. 😶
Click here to hear more about this book and my other anticipated releases of the upcoming quarter over on my Booktube channel, abookolive!
The stories I have after over a decade on YouTube, I swear. 😶
Click here to hear more about this book and my other anticipated releases of the upcoming quarter over on my Booktube channel, abookolive!
Review of advance copy received from NetGalley
The Vanishing Family by Robert Kolker is a remarkable and deeply affecting work of narrative nonfiction that chronicles the lives of a family with nine children whose mother carried a rare genetic variant of frontotemporal dementia (FTD), a devastating neurodegenerative disease that gave each child a fifty-percent chance of inheriting the mutation. Kolker deftly weaves together scientific inquiry, medical history, and intimate family portraiture, rendering complex neurological research accessible without sacrificing its nuance or significance.
One of the book’s greatest strengths lies in its exploration of how FTD gradually transforms the very essence of a person. Unlike diseases that primarily erode memory, frontotemporal dementia often attacks the regions of the brain responsible for judgment, impulse control, empathy, and social behavior. As Kolker follows the lives of the affected siblings, readers witness the unsettling and heartbreaking process by which familiar personalities begin to disappear. Loving spouses become emotionally distant; responsible adults engage in reckless behavior; once-compassionate individuals lose the capacity to understand the feelings of those around them. The disease does not simply alter cognition—it reshapes identity itself, creating the painful sensation that family members are living with someone who is simultaneously present and absent.
Kolker offers a profoundly human lens into the emotional wreckage these personality changes leave behind. Relationships fracture under the strain of inexplicable behaviors, marriages are tested, and siblings grapple with the anguish of watching one another slowly become strangers. The uncertainty surrounding who may be next to develop symptoms casts a shadow over every life decision, making the burden of genetic inheritance almost as cruel as the disease itself.
Yet amid the sorrow, the book is also a testament to resilience, loyalty, and familial devotion. The unwavering support that family members extend to one another is both moving and admirable. Their commitment to caregiving, advocacy, and participation in research reflects a quiet courage that permeates the narrative and provides moments of hope within an otherwise tragic story.
While I found The Vanishing Family somewhat less compelling than Kolker’s extraordinary earlier work, Hidden Valley Road, I was nonetheless completely absorbed by this account. The family’s struggle is emotionally devastating, and Kolker succeeds in making readers feel the weight of a genetic fate that hangs over every generation. The book also serves as a powerful reminder of the importance of sustained medical research. At a time when scientific funding faces increasing pressures, the story underscores how urgently families confronting diseases like FTD depend upon continued investment in research, treatment, and hope. By the final page, one is left not only saddened by the immense burden borne by this family, but also inspired by their determination to confront an illness that threatens to erase the very traits that make us who we are.
Thank you to NetGalley and the publisher for an ARC in return for an honest review
One of the book’s greatest strengths lies in its exploration of how FTD gradually transforms the very essence of a person. Unlike diseases that primarily erode memory, frontotemporal dementia often attacks the regions of the brain responsible for judgment, impulse control, empathy, and social behavior. As Kolker follows the lives of the affected siblings, readers witness the unsettling and heartbreaking process by which familiar personalities begin to disappear. Loving spouses become emotionally distant; responsible adults engage in reckless behavior; once-compassionate individuals lose the capacity to understand the feelings of those around them. The disease does not simply alter cognition—it reshapes identity itself, creating the painful sensation that family members are living with someone who is simultaneously present and absent.
Kolker offers a profoundly human lens into the emotional wreckage these personality changes leave behind. Relationships fracture under the strain of inexplicable behaviors, marriages are tested, and siblings grapple with the anguish of watching one another slowly become strangers. The uncertainty surrounding who may be next to develop symptoms casts a shadow over every life decision, making the burden of genetic inheritance almost as cruel as the disease itself.
Yet amid the sorrow, the book is also a testament to resilience, loyalty, and familial devotion. The unwavering support that family members extend to one another is both moving and admirable. Their commitment to caregiving, advocacy, and participation in research reflects a quiet courage that permeates the narrative and provides moments of hope within an otherwise tragic story.
While I found The Vanishing Family somewhat less compelling than Kolker’s extraordinary earlier work, Hidden Valley Road, I was nonetheless completely absorbed by this account. The family’s struggle is emotionally devastating, and Kolker succeeds in making readers feel the weight of a genetic fate that hangs over every generation. The book also serves as a powerful reminder of the importance of sustained medical research. At a time when scientific funding faces increasing pressures, the story underscores how urgently families confronting diseases like FTD depend upon continued investment in research, treatment, and hope. By the final page, one is left not only saddened by the immense burden borne by this family, but also inspired by their determination to confront an illness that threatens to erase the very traits that make us who we are.
Thank you to NetGalley and the publisher for an ARC in return for an honest review
Review of advance copy received from NetGalley
This book touched me and made me reflect on human nature and the meaning of family in ways I did not anticipate. I chose to read it because dementia impacted my grandmother and five of her sisters. I didn’t know what frontal temporal dementia was but surely it had to be similar. Not at all! FTD impacts a person early in life and it leaves every descendent with a 50% chance of inheriting the condition, which leads to change in behavior, personality and language.
The book, so well written by Robert Kolker (I very much enjoyed his book Hidden Valley Road), follows a family of nine siblings who are confronted with this disease. Very early on we realize the mother of the nine suffered from a condition (beyond the breast cancer she ignored) that led to her death at age 62. The siblings, spouses and offspring live normal lives, until they don’t.
Robert Kolker does a fantastic job of explaining the science behind the brain, personality and then the decline of the person. The reader is given insight into the relevance of aging and the loss of personality. We follow the understanding of how a brain works, or doesn’t work, and how “better understanding the mind - a bridge between neurology and psychiatry and philosophy” can impact our futures. The focus is on frontal temporal dementia but Kolker also leads us through the research into rare diseases that are understudied and underfunded.
All the science is intertwined with the family (no last name given) as they navigate their exposure to and understanding of FTD. Each sibling is different, not only in that some have the inherited gene, some do not, and some never get tested. The feelings and emotions that the reader develops with the family is extraordinary. You feel for them as they, some better than others, deal with the diagnosis of a beloved sibling, or their own diagnosis.
Then, and this is the part that really opened my heart and mind, there are the children. When your parent has a genetic disease and you know you have a 50% chance of also having it, at what point in your life do you get tested? And if tested, can you handle the results? Do you get married? Do you have children? Do you pay huge sums of money for selective embryo transfer? I was profoundly touched by the individuals that shared with the author, their openness, their vulnerability.
I chose this book to be educated about dementia. What I got from this book was the deep and complex human emotions of how to handle, or not, a diagnosis of early onset dementia, and how to, or not, plan for what is to come. I am in awe of the humans Mr. Kolker so vividly depicted in this deeply moving book.
I received an advanced reader copy from NetGalley but all opinions are mine alone.
The book, so well written by Robert Kolker (I very much enjoyed his book Hidden Valley Road), follows a family of nine siblings who are confronted with this disease. Very early on we realize the mother of the nine suffered from a condition (beyond the breast cancer she ignored) that led to her death at age 62. The siblings, spouses and offspring live normal lives, until they don’t.
Robert Kolker does a fantastic job of explaining the science behind the brain, personality and then the decline of the person. The reader is given insight into the relevance of aging and the loss of personality. We follow the understanding of how a brain works, or doesn’t work, and how “better understanding the mind - a bridge between neurology and psychiatry and philosophy” can impact our futures. The focus is on frontal temporal dementia but Kolker also leads us through the research into rare diseases that are understudied and underfunded.
All the science is intertwined with the family (no last name given) as they navigate their exposure to and understanding of FTD. Each sibling is different, not only in that some have the inherited gene, some do not, and some never get tested. The feelings and emotions that the reader develops with the family is extraordinary. You feel for them as they, some better than others, deal with the diagnosis of a beloved sibling, or their own diagnosis.
Then, and this is the part that really opened my heart and mind, there are the children. When your parent has a genetic disease and you know you have a 50% chance of also having it, at what point in your life do you get tested? And if tested, can you handle the results? Do you get married? Do you have children? Do you pay huge sums of money for selective embryo transfer? I was profoundly touched by the individuals that shared with the author, their openness, their vulnerability.
I chose this book to be educated about dementia. What I got from this book was the deep and complex human emotions of how to handle, or not, a diagnosis of early onset dementia, and how to, or not, plan for what is to come. I am in awe of the humans Mr. Kolker so vividly depicted in this deeply moving book.
I received an advanced reader copy from NetGalley but all opinions are mine alone.
Review of advance copy received from NetGalley
Robert Kolker's "Hidden Valley Road" was one of the best medical nonfiction books I've yet to read, so I jumped at the chance for an early peek into his newest work. True to form, "The Vanishing Family" examines one debilitating disorder - frontotemporal dementia (FTD) - and its lifelong impacts on one family.
Centered in this piece are the family started by father Ollie and mother Jean, who settle into the typical storyline of the American Dream in a suburban neighborhood in Pleasantville, Pennsylvania to raise their 9 children. From the eldest child and daughter, Kathy, to the youngest (and unexpected) child Barb, they appear to have their lives set for them - until Jean begins displaying unexpected changes in behavior and personality, beginning to drink and smoke excessively and showing no response to her family's actions, including her husband's extramarital affair, and the family slowly starts to crumble. It isn't until her children begin to show similar symptoms in their middle age that the family is able to uncover the truth - they have frontotemporal dementia, a brain disorder that is eventually linked to a genetic mutation that is passed down hereditarily.
Kolker does an incredible job as medical journalist, not only laying out the underlying science and medical history and breakthroughs related to FTD, but also in painting the dynamic of the family and the individual personalities and characters. The extent of research, tracing the lineages, amassing the stories and anecdotes, and describing each member is no small feat, and I appreciated how he devoted significant time in the backstories and descriptions of each person. We come to see how the siblings, many of whom are high-achieving and ambitious, come to deal with the disease in their own ways, and how their relationships with each other impact what happens in the years to come - to which siblings eventually become caregivers, which ones detach themselves from the family completely, and which ones become champions for the cause, lobbying scientists and pharmaceutical companies to devote resources towards finding a cure. It is inspiring but also depressing, and certainly leads to larger questions: How can you love someone who transforms into someone completely else? How much of one's identity is attributed to who they are before or after a disease? And what is someone willing to sacrifice to provide the care and resources necessary for someone they no longer recognize?
One of the best reads of the year for me so far, and one that I would recommend to anyone when "The Vanishing Family" is published in September 2026!
Centered in this piece are the family started by father Ollie and mother Jean, who settle into the typical storyline of the American Dream in a suburban neighborhood in Pleasantville, Pennsylvania to raise their 9 children. From the eldest child and daughter, Kathy, to the youngest (and unexpected) child Barb, they appear to have their lives set for them - until Jean begins displaying unexpected changes in behavior and personality, beginning to drink and smoke excessively and showing no response to her family's actions, including her husband's extramarital affair, and the family slowly starts to crumble. It isn't until her children begin to show similar symptoms in their middle age that the family is able to uncover the truth - they have frontotemporal dementia, a brain disorder that is eventually linked to a genetic mutation that is passed down hereditarily.
Kolker does an incredible job as medical journalist, not only laying out the underlying science and medical history and breakthroughs related to FTD, but also in painting the dynamic of the family and the individual personalities and characters. The extent of research, tracing the lineages, amassing the stories and anecdotes, and describing each member is no small feat, and I appreciated how he devoted significant time in the backstories and descriptions of each person. We come to see how the siblings, many of whom are high-achieving and ambitious, come to deal with the disease in their own ways, and how their relationships with each other impact what happens in the years to come - to which siblings eventually become caregivers, which ones detach themselves from the family completely, and which ones become champions for the cause, lobbying scientists and pharmaceutical companies to devote resources towards finding a cure. It is inspiring but also depressing, and certainly leads to larger questions: How can you love someone who transforms into someone completely else? How much of one's identity is attributed to who they are before or after a disease? And what is someone willing to sacrifice to provide the care and resources necessary for someone they no longer recognize?
One of the best reads of the year for me so far, and one that I would recommend to anyone when "The Vanishing Family" is published in September 2026!
Review of advance copy received from NetGalley
I think this book honestly wrecked me in a really quiet, lingering way.
As someone who has had multiple family members go through dementia and Alzheimer’s, this didn’t feel like just a book I was reading, but it felt way too familiar. Almost uncomfortably so. The way Kolker describes the slow loss of self, the personality changes, the confusion… I’ve seen that up close. And reading it laid out like this brought all of that back in a way I wasn’t fully prepared for.
What really got me was the love in this family. It’s devastating, but it’s also what drives everything. They’re not just dealing with illness; they’re actively searching for answers, for a cure, for anything that could stop what they’re watching happen over and over again. That kind of devotion, that refusal to just accept it, is honestly what makes the book so hard and so meaningful at the same time.
And then there’s that horrifying realization that what happened to their mother starts showing up in the siblings too. That part is genuinely terrifying. Because I don’t have to imagine that fear... I already carry it. That constant wondering in the back of your mind, like is this going to be me someday? Is there anything I can do? Or is it just waiting?
That’s what makes this book so heavy. It’s not distant or clinical but it feels immediate. Like I am watching something unfold in real time that I already know too well.
But even with how devastating it is, there’s something really important underneath all of it. The science, the research, the decades of trying to understand this disease are what REALLY matters. And this family’s story shows exactly why it matters so much. If there’s even a chance that studying something like this can lead to answers for dementia or Alzheimer’s in general, then it has to be pursued. There’s a fragile kind of hope in that, even when everything else feels really bleak.
This book is heartbreaking, but it also feels necessary. It is definitely going to stay with me. And for anyone who has lived even a small version of this kind of loss, it hits even deeper than you expect it to.
Thank you to NetGalley, Robert Kolker, and Doubleday for the eARC of this book.
As someone who has had multiple family members go through dementia and Alzheimer’s, this didn’t feel like just a book I was reading, but it felt way too familiar. Almost uncomfortably so. The way Kolker describes the slow loss of self, the personality changes, the confusion… I’ve seen that up close. And reading it laid out like this brought all of that back in a way I wasn’t fully prepared for.
What really got me was the love in this family. It’s devastating, but it’s also what drives everything. They’re not just dealing with illness; they’re actively searching for answers, for a cure, for anything that could stop what they’re watching happen over and over again. That kind of devotion, that refusal to just accept it, is honestly what makes the book so hard and so meaningful at the same time.
And then there’s that horrifying realization that what happened to their mother starts showing up in the siblings too. That part is genuinely terrifying. Because I don’t have to imagine that fear... I already carry it. That constant wondering in the back of your mind, like is this going to be me someday? Is there anything I can do? Or is it just waiting?
That’s what makes this book so heavy. It’s not distant or clinical but it feels immediate. Like I am watching something unfold in real time that I already know too well.
But even with how devastating it is, there’s something really important underneath all of it. The science, the research, the decades of trying to understand this disease are what REALLY matters. And this family’s story shows exactly why it matters so much. If there’s even a chance that studying something like this can lead to answers for dementia or Alzheimer’s in general, then it has to be pursued. There’s a fragile kind of hope in that, even when everything else feels really bleak.
This book is heartbreaking, but it also feels necessary. It is definitely going to stay with me. And for anyone who has lived even a small version of this kind of loss, it hits even deeper than you expect it to.
Thank you to NetGalley, Robert Kolker, and Doubleday for the eARC of this book.
Review of advance copy received from NetGalley
I really enjoyed Hidden Valley Road and was looking forward to reading this one, since in a previous life I worked in regulatory health policy at a pharmaceutical company and was part of an Alzheimer's disease drug development program. While all dementia is not the same, of course, it did spark a life-long interest in the way the brain can deteriorate and I was curious to see Kolker's attentions turned to this topic.
While I found the concept interesting, I must confess that I felt like I was reading HVR again albeit with a different familial disease focus this time around. That's not a bad thing necessarily - I can appreciate that large families with genetic disease will likely have at least some similarities in the way those diseases affect family dynamics - but it did feel repetitive and like I had read aspects of the story before. The interplay between parents and siblings and the dysfunction that arose from that just didn't hold my attention the same way this time.
Oddly enough, neither did the science - which really surprised me. While I didn't have the same "been there before" feeling in this aspect of the book, it just didn't grab my attention the way the schizophrenia research did in the earlier book. I'm not sure why that is...
I felt like I might have just encountered the two books too closely together in time, so double-checked when I finished HVR. Turns out that was six years ago, so perhaps this isn't about proximity in time and is about the way the stories tied together in my mind. Regardless, I enjoyed this one well enough but didn't find it as compelling as the earlier read.
Thanks to NetGalley and the publisher for my obligation-free review copy.
While I found the concept interesting, I must confess that I felt like I was reading HVR again albeit with a different familial disease focus this time around. That's not a bad thing necessarily - I can appreciate that large families with genetic disease will likely have at least some similarities in the way those diseases affect family dynamics - but it did feel repetitive and like I had read aspects of the story before. The interplay between parents and siblings and the dysfunction that arose from that just didn't hold my attention the same way this time.
Oddly enough, neither did the science - which really surprised me. While I didn't have the same "been there before" feeling in this aspect of the book, it just didn't grab my attention the way the schizophrenia research did in the earlier book. I'm not sure why that is...
I felt like I might have just encountered the two books too closely together in time, so double-checked when I finished HVR. Turns out that was six years ago, so perhaps this isn't about proximity in time and is about the way the stories tied together in my mind. Regardless, I enjoyed this one well enough but didn't find it as compelling as the earlier read.
Thanks to NetGalley and the publisher for my obligation-free review copy.
Review of advance copy received from NetGalley
A compassionate and thorough look into the impact of a little known disease on a family of 9 brothers and sisters. Frontotemporal Dementia (FTD) is a devastating disease in many ways but two seem the most cruel to me…the patient has a 50/50 chance of passing it onto their children and psychologically changes start to appear in their 40’s. .Like other dementia-related diseases, FTD doesn’t impact the patient’s physical health so that he/she may live a normal life span but slowly descend into their own world for decades. They require care and supervision that is often provided by a loved one because long term institutional care is so expensive. Barb, the youngest child, is still living at home and has a first hand view into her mother’s profound personality changes She sees the same changes start to appear in 5 of her siblings as they age into their 40s and tries to find out what is really going on? How can so many of them follow the same behavior patterns and not have a disease that is diagnosable and genetic? In interspersed chapters, Kolker tells the fascinating detective story of how the advances of medicine once that last 100 years gains the technology to identify and test for the gene that causes the disease. But the real story is told through individual family members’ experiences and those of their loved ones as the patient’s behavior becomes unrecognizable and they start to do things that they would never have normally done They lose empathy and inhibitions and ultimately all contact with reality. This books turns the story of a complicated disease and dry science and makes is real and relatable.
June 25, 2026
Every bit as good as Hidden Valley Road. This follows a family of 8 siblings born between 1951 and 1966 - oh and a bonus baby 10 years later, for a total of 9 - as they navigate the effects of a rare genetic mutation in their family. While no last name is given, and some first names have been changed, their story is 100% true, and backed up by the author’s interviews with extended family, medical providers and relevant others.
The mutation is classified in the same area as dementia, but has its own unique characteristics, including age at onset and how (and how long) one can live and function after diagnosis. The author has researched the development of the disease over decades, along with the medical studies of its origins and potential for treating or eliminating it through new technologies.
Most of the book is very experience-based, describing how the various family members are affected by the discovery (or refusal to test for the discovery) of the mutation. But there’s enough actual hard science interspersed to remind you that you’re reading a non-fiction account of a family’s actual experiences with a very real genetic condition.
I thought this was a very informative and compassionate treatment of one family’s experiences with a rare genetic mutation, and found it very intriguing, yet tastefully presented. I hope it receives lots of love when it’s published in September.
The mutation is classified in the same area as dementia, but has its own unique characteristics, including age at onset and how (and how long) one can live and function after diagnosis. The author has researched the development of the disease over decades, along with the medical studies of its origins and potential for treating or eliminating it through new technologies.
Most of the book is very experience-based, describing how the various family members are affected by the discovery (or refusal to test for the discovery) of the mutation. But there’s enough actual hard science interspersed to remind you that you’re reading a non-fiction account of a family’s actual experiences with a very real genetic condition.
I thought this was a very informative and compassionate treatment of one family’s experiences with a rare genetic mutation, and found it very intriguing, yet tastefully presented. I hope it receives lots of love when it’s published in September.
Review of advance copy received from NetGalley
This a review of an advance reader copy from NetGalley.
I requested this book as my sister in law has dementia and I wanted to learn more about this disease. This book taught me so much more about life and who or what makes up a person.
This is a personal recounting of a family of 9 children whose mother has a rare form of dementia -FTD. You will learn what this disease is and how it impacts this family. You learn the stories of each of the children coming to terms with the decline of their mother, the slow learning what the disease was and whether or not to get tested.
Interspersed with this family’s story is a history of how the medical field first identified this particular disease. The painfully slow progress in researching this disease and where we stand today. It was fascinating to follow the research over the decades of neurological research which is not a sentence I thought I’d ever write.
Along the way I found myself reflecting on the way families can work together to support each other through very difficult situations. Who are you over a lifetime and if your behavior changes because of disease are you in fact the same person or a new person. The pain of deciding to know or not know if you are a carrier. Not only do these families have to deal with such an awful disease they have to deal with the uncertainty as to when and if they may start their own decline and if they would even realize their own decline.
I finished the book feeling hopeful for this family and the progress that is being made toward finding a cure.
I requested this book as my sister in law has dementia and I wanted to learn more about this disease. This book taught me so much more about life and who or what makes up a person.
This is a personal recounting of a family of 9 children whose mother has a rare form of dementia -FTD. You will learn what this disease is and how it impacts this family. You learn the stories of each of the children coming to terms with the decline of their mother, the slow learning what the disease was and whether or not to get tested.
Interspersed with this family’s story is a history of how the medical field first identified this particular disease. The painfully slow progress in researching this disease and where we stand today. It was fascinating to follow the research over the decades of neurological research which is not a sentence I thought I’d ever write.
Along the way I found myself reflecting on the way families can work together to support each other through very difficult situations. Who are you over a lifetime and if your behavior changes because of disease are you in fact the same person or a new person. The pain of deciding to know or not know if you are a carrier. Not only do these families have to deal with such an awful disease they have to deal with the uncertainty as to when and if they may start their own decline and if they would even realize their own decline.
I finished the book feeling hopeful for this family and the progress that is being made toward finding a cure.
Review of advance copy received from NetGalley
A large, typical American family is slowly replaced with unselfconscious, uninhibited strangers as those that remain look for a cure to their inherited plight.
Sound dramatic? Because it was. This is... cinematic. Emotionally charged. Devastating while also beautiful in that it shows the depths of familial love. This is Kolker's best work yet. I couldn't put it down.
We follow nine siblings as they come of age, simultaneously finding out that their parents' marriage is less than perfect and their mother is mysteriously deteriorating. Even worse, they come to see these odd changes later amongst themselves as they welcome the next generation of potential victims to their familial curse. We face important ethical and emotional qualms — would you have kids if they were at a high risk of inheriting an early-onset dementia? How much of your life do you sacrifice to care for your loved ones? Would you want to know if your independence and sense of self had an expiration?
Excerpt w/out spoilers: She was left searching for flickers of self-awareness in them, any recognition that they were changing. And after so much time alone with them, she did find that, in certain rare moments, they would say as much: “Don’t you think I know there’s something wrong with me?” Haunting.
I received my copy from Netgalley.
Sound dramatic? Because it was. This is... cinematic. Emotionally charged. Devastating while also beautiful in that it shows the depths of familial love. This is Kolker's best work yet. I couldn't put it down.
We follow nine siblings as they come of age, simultaneously finding out that their parents' marriage is less than perfect and their mother is mysteriously deteriorating. Even worse, they come to see these odd changes later amongst themselves as they welcome the next generation of potential victims to their familial curse. We face important ethical and emotional qualms — would you have kids if they were at a high risk of inheriting an early-onset dementia? How much of your life do you sacrifice to care for your loved ones? Would you want to know if your independence and sense of self had an expiration?
Excerpt w/out spoilers: She was left searching for flickers of self-awareness in them, any recognition that they were changing. And after so much time alone with them, she did find that, in certain rare moments, they would say as much: “Don’t you think I know there’s something wrong with me?” Haunting.
I received my copy from Netgalley.
Review of advance copy received from NetGalley
Thank you to Doubleday and Netgalley for the ARC of this book. I read it in a day. Kolker writes non fiction in such a compelling way. I really empathized with Barb, the sister that is heavily discussed in the book. I appreciated learning about a rare form of dementia caused by a genetic mutation, known as FTD. I never knew about that before and the science behind it was fascinating, but at times, the alternating chapters of the family in the story and the discussion of dementia, the history of dementia research, and the scientific progress that has been made (or not made) in the field got a bit dry for me. I kept wanting to speed through to the parts about the family.
Kolker mentions Oliver Sacks at one point and I thought about all of his books, as he was a favorite of mine. Because Sacks was an actual scientist, I think he could get away with describing the more technical aspects of his cases. Though he tried to make it engaging, I think Kolker's strengths are really in telling the story of the family afflicted with the FTD gene mutation. I simply could not put the book down. I love Kolker's work and I will read anything he writes. I appreciated having access to this book early. It will be a purchase for our library for sure.
Kolker mentions Oliver Sacks at one point and I thought about all of his books, as he was a favorite of mine. Because Sacks was an actual scientist, I think he could get away with describing the more technical aspects of his cases. Though he tried to make it engaging, I think Kolker's strengths are really in telling the story of the family afflicted with the FTD gene mutation. I simply could not put the book down. I love Kolker's work and I will read anything he writes. I appreciated having access to this book early. It will be a purchase for our library for sure.
June 9, 2026
Robert Kolker weaves together an intimate portrait of a large Pennsylvania family with scientific inquiry surrounding the neuropsychology behind neurodegenerative disorders. The interspersing of scientific findings about inhibition, personality, and cognitive decline with the lifetime of a family trying to understand what they are suffering from allows the reader to form connections and a better understanding of frontotemporal dementia (FTD).
Kolker raises plenty of thought-provoking questions throughout the book including if you could find out whether you had a neurodegenerative disease, would you? If you chose yes and tested positive, would you share the results with your loved ones? Would you continue to live life as normal?
As I neared the end of the book, I began to wonder more about the family discussed. I went into this read with very little background knowledge on dementia and came out of it with a new understanding of the various diagnoses one can receive and the intricate human emotions that came with said diagnoses or caring for a loved one as they navigate their new normal.
Overall, an exceptionally written book that I’d highly recommend.
Kolker raises plenty of thought-provoking questions throughout the book including if you could find out whether you had a neurodegenerative disease, would you? If you chose yes and tested positive, would you share the results with your loved ones? Would you continue to live life as normal?
As I neared the end of the book, I began to wonder more about the family discussed. I went into this read with very little background knowledge on dementia and came out of it with a new understanding of the various diagnoses one can receive and the intricate human emotions that came with said diagnoses or caring for a loved one as they navigate their new normal.
Overall, an exceptionally written book that I’d highly recommend.
May 17, 2026
Thank you to NetGalley for providing me with this ARC! This was an interesting book about a family dealing with a devastating inherited form of dementia. The disease is rare, which makes it difficult to find patients to participate in research studies. Pharmaceutical companies have little interest in researching medication for such a small patient population, because it’s expensive and there is not enough profit to be made by doing so. The family the author wrote about is very large, so it was easier to document the path that the disease followed in each affected member. I literally could not put this book down. The writer fleshed out each family member and brought them all to life. I felt like I knew all of them. He handled this difficult topic with empathy and grace and even humor at times. The family members were brave and resilient in the face of incredible struggle. They just wouldn’t quit. I would highly recommend this book if you like medical mysteries and reading about amazing people.
Review of advance copy received from Edelweiss+
Wow, just wow. Robert Kolker, author of "Hidden Valley Road: Inside the Mind of an American Family" has done it again; he's written another book that everyone's going to be talking about. Where the subject of Hidden Valley Road was schizophrenia, this book is about familial dementia and the family who carries the gene mutation. A Pennsylvania family with nine children began to notice that the mother and one after another of the siblings began to lose their inhibitions and become withdrawn, angry and people the rest of the family didn't recognize.
After much testing and fighting for answers they are told that they carry a rare form of FTD (frontotemporal dementia). Sadly they also learn that there is a fifty-fifty chance that their children might inherit the gene, but they also learn that their family might hold the key to a cure for dementia and FTD. Put this on your to be read list! Book clubs will have much to discuss.
*I read an advance copy and was not compensated.
After much testing and fighting for answers they are told that they carry a rare form of FTD (frontotemporal dementia). Sadly they also learn that there is a fifty-fifty chance that their children might inherit the gene, but they also learn that their family might hold the key to a cure for dementia and FTD. Put this on your to be read list! Book clubs will have much to discuss.
*I read an advance copy and was not compensated.
Review of advance copy received from NetGalley
I really didn't know what to expect from this book. I was intrigued because I had read the authors other work, Hidden Valley Road. This book follows the exact same formula.
Taking the family members and following them through whether or not they developed the FTD.
At times it was heart breaking, times it was scary...waiting for the results of the tests.
However, the story isnt over. The next generation is learning about their genes. Maybe there will be new gene therapy or some kind of advancement in medicine.
This book was not the emotional roller coaster ride that Hidden Valley road was. I didn't feel as connected to this family as I had the previous book.
The author seemed to focus only on Barb and the other siblings were second squad.
Overall, a good read of the FTD and a family's reckoning with it.
Thank you to Netgalley and the publisher for the ARC in exchange for this honest review.
Taking the family members and following them through whether or not they developed the FTD.
At times it was heart breaking, times it was scary...waiting for the results of the tests.
However, the story isnt over. The next generation is learning about their genes. Maybe there will be new gene therapy or some kind of advancement in medicine.
This book was not the emotional roller coaster ride that Hidden Valley road was. I didn't feel as connected to this family as I had the previous book.
The author seemed to focus only on Barb and the other siblings were second squad.
Overall, a good read of the FTD and a family's reckoning with it.
Thank you to Netgalley and the publisher for the ARC in exchange for this honest review.
Review of advance copy received from NetGalley
As someone who had a late family member with dementia, I decided to read this in order to understand the disease.
The Vanishing Family is a harrowing book about the impact of a family’s rare form of frontotemporal dementia. It was a heartbreaking but informative read. I liked that it considerately combined science, history, and family narrative to disclose the story of a mother and nine of her children who inherited a genetic mutation. It’s well-written and researched. I also appreciated that there is some glimmer of hope on the horizon despite such a devastating story.
Overall, this is a great but sad book. If you enjoyed Robert Kolker’s last book, it will be right up your alley. If you’re new to the author, I highly recommend it if you are interested in genetics or expanding your knowledge about dementia.
Thank you NetGalley and Doubleday Books for the ARC(advanced reader copy) in return for an honest review.
The Vanishing Family is a harrowing book about the impact of a family’s rare form of frontotemporal dementia. It was a heartbreaking but informative read. I liked that it considerately combined science, history, and family narrative to disclose the story of a mother and nine of her children who inherited a genetic mutation. It’s well-written and researched. I also appreciated that there is some glimmer of hope on the horizon despite such a devastating story.
Overall, this is a great but sad book. If you enjoyed Robert Kolker’s last book, it will be right up your alley. If you’re new to the author, I highly recommend it if you are interested in genetics or expanding your knowledge about dementia.
Thank you NetGalley and Doubleday Books for the ARC(advanced reader copy) in return for an honest review.
Review of advance copy
This book was astounding! As a nurse that works daily with families who have loved ones with dementia or Alzheimer’s this book shed even more light into the various sub groups of dementia. Just the story of a family with 9 children who have a 50% change of inheriting this form of dementia was fascinating. The writer was able to capture so much of how each sibling was so different from each other given the same diagnosis. It was also high lighted how difficult it can be to manage the care of someone with this illness but also the love of a sibling to devote their entire life to care for another loved one. I hope that funding for research to continues so that there may be a possible cure in the future to prevent any families to have to go through and watch their loved ones lose themselves physically and mentally.
Review of advance copy received from NetGalley
This is a powerful and deeply human account of frontotemporal dementia, a disease that strips away personality during the prime of life.
The author tells Barb’s story with striking honesty, revealing the ripple effects across generations of her family, where each child lives with the weight of a 50% chance of inheriting the condition. What elevates this book is Barb’s response to that reality. Instead of retreating, she transforms fear into purpose: championing genetic testing, driving awareness, and advocating for progress toward treatment and prevention.
Woven throughout is a clear and compelling look at the science behind the disease, particularly the genetic mutation at its core, offering hope that one day there could be a cure.
The author tells Barb’s story with striking honesty, revealing the ripple effects across generations of her family, where each child lives with the weight of a 50% chance of inheriting the condition. What elevates this book is Barb’s response to that reality. Instead of retreating, she transforms fear into purpose: championing genetic testing, driving awareness, and advocating for progress toward treatment and prevention.
Woven throughout is a clear and compelling look at the science behind the disease, particularly the genetic mutation at its core, offering hope that one day there could be a cure.
Review of advance copy received from NetGalley
I’ve always been fascinated with minds. I was a nurse for about 35 years. In nursing school our semester on mental health was one of my favorites. The parts of this book about the family and how FTD overtook the brains of the mother and the majority of her nine children and some of her grandchildren was very interesting. It was hard for me to get through the technical stuff and I understand why it needed to be included in the book but it was classroom like. It’s a sad story but one of resilience and love. Thank you to NetGalley and the publisher for allowing me to read an advance copy for my honest review.
Review of advance copy received from Publisher
This was such a hard read because it strikes fear into just about everyone. Not only does this deal with dementia, but it strikes the person young and it's genetic. Here, there is a family of 9 siblings and their kids and parents. And at times, it's just heartbreaking as to what they are going through and as they decide to make intensely personal decisions. Kolker depicts this family and their love and devotion and now, activism with personality and hope.
I received an arc from the publisher but all opinions are my own.
I received an arc from the publisher but all opinions are my own.
Review of advance copy received from Netgalley
Three and a half stars rounded up to four. This book follows a family with nine children, whose mother had a 50/50 shot of passing down a mutation of early onset dementia. Unlike Alzheimer's, this dementia showed up in people as early as their forties. Out of the nine children, five had it, and some passed it on to their own children. The book explores research in looking for a cure.
I don't normally read non fiction, but this book caught my attention. It was a little dry in some areas, but for the most part, I found it to be interesting.
I don't normally read non fiction, but this book caught my attention. It was a little dry in some areas, but for the most part, I found it to be interesting.
Review of advance copy received from NetGalley
This was such an enthralling read! This case was so fascinating to read about and the writing was spectacularly done. You were really drawn into each family member's personal experience and thoughts. This was such a thoroughly-researched book, but didn't feel tedious or long at all, it was woven together so naturally and you kept wanting to follow along with the family, along with important advances in the science. I can't wait for Kolker's next book!!
Thank you very much NetGalley and Doubleday publishers for this free ARC; my opinions are fully my own.
Thank you very much NetGalley and Doubleday publishers for this free ARC; my opinions are fully my own.
Review of advance copy received from NetGalley
This is a heartbreaking story of a family who has a hereditary disease. Family members tell their personal stories dealing with Frontotemporal Dementia. The disease is passed from their mother. The scary part is who will inherit it and who will not. Some do not want to know. The family members who get it don't believe they have it. Their behavior and personality changes. It's a long road before they find out about FLD. You should read this book if you want to learn about this disease. I would like to thank NetGalley for an advanced copy of this book to read.
April 27, 2026
Another fantastic look at a family with an interesting health narrative by Robert Kolker. This time surrounding dementia (FTD). Similarly to his other book, the story involves a whole family who searches for answer first on their mom and then each other. It is definitely a must read and should be added to your list once it’s comes out!
I received a free advanced copy of this book through NetGalley in exchange for an honest review.
I received a free advanced copy of this book through NetGalley in exchange for an honest review.
Review of advance copy received from NetGalley
I received a free copy of, The Vanishing Family, by Robert Kolker, from the publisher and Netgalley in exchange for an honest review. Barb is the baby of the family with eight older siblings. Barb finds out her family has a gene mutation for dementia. Wow what a read, I cant imagine if I was faced with having to find out if I had a disease like FTD. This is a heavy read but a good read, sad at times.
Review of advance copy received from NetGalley
I received an advanced reader copy of the book. That does not affect my review in any way.
This was a tough book to get through. Not a fun topic. My heart goes out to this family and all others affected with neurological diseases.
I had not heard of this particular disease before so it was quite eye opening. A little hard to get through the scientific portions but was still informative. Their is a lot that I was not aware of.
This was a tough book to get through. Not a fun topic. My heart goes out to this family and all others affected with neurological diseases.
I had not heard of this particular disease before so it was quite eye opening. A little hard to get through the scientific portions but was still informative. Their is a lot that I was not aware of.
Review of advance copy received from Netgalley
Wow, I have never read a non-fiction book that was as much of a page-turner as this one! The story of this family, the questions and dilemmas that their situation raises, and just the pure mystery story of figuring out what's happening, are all riveting. Definitely recommended, especially as dementias and similar brain disorders are on the rise globally.
Review of advance copy received from NetGalley
Robert Kolker's Hidden Valley Road is one of my favorite books, a rare 5 star from me, so I was very excited to read his latest book The Vanishing Family. Once again he delivers a compelling, heartbreaking account of a devastating illness and the enormous impact on one family.
(While I appreciated the thorough research, some of the research and technical medical details slowed the pace of the book and at times seemed repetitive.)
Highly recommend The Vanishing Family.
4.5 stars
#RobertKolker #TheVanishingFamily
(While I appreciated the thorough research, some of the research and technical medical details slowed the pace of the book and at times seemed repetitive.)
Highly recommend The Vanishing Family.
4.5 stars
#RobertKolker #TheVanishingFamily
May 13, 2026
A fascinating look at the heartbreaking slow decline that is brought on by the absolutely devastating multidimensional and still not completely understood disease that is dementia
Review of advance copy received from Publisher
I was lucky enough to read an early copy of this slam-dunk follow up to Hidden Valley Road. The Vanishing Family follows another very unfortunate family as they discover that many of them have inherited the gene for a rare form of early onset dementia. Between his two books and Who is the Bad Art Friend?, Kolker continues to prove that he is one of the great journalists of our time. This book is deftly written, deeply sad, gut wrenchingly life-affirming, and a deliciously satisfying scientific read, to boot.
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