Would You Want to Know? A Family’s 50% Chance of Inheriting Dementia, with Robert Kolker

Would you want to know if you had a 50% chance of developing an inherited form of dementia?

In this episode of Causes or Cures, Dr. Eeks talks with #1 New York Times bestselling author Robert Kolker about his new book, The Vanishing Family: Love, Fate, and the Quest to End Dementia.

The book follows a Pennsylvania family across generations as they confront a rare inherited form of frontotemporal dementia (FTD) associated with a mutation involving tau. For family members, genetic testing can answer an extraordinary question: Did I inherit the mutation or not? But knowing the answer can affect virtually everything that follows—relationships, having children, plans for the future and how someone interprets changes in their own behavior. 

Eeks and Robert discuss the very different ways family members approached genetic testing; whether getting older without symptoms means you're in the clear; having children when there's a chance of passing on the mutation; and the unsettling way FTD can first appear as changes in personality, judgment and behavior rather than something obviously recognizable as neurological disease.

They also get into some of the bigger questions raised by the book: How much of who we are is our brain? Would you want the option to end your life before a degenerative disease changed who you were? Can lifestyle meaningfully alter the course of a strongly inherited dementia? And what can medicine actually offer someone who learns today that they carry one of these mutations?

Finally, they discuss why researchers are so interested in this family's rare form of FTD. The mutation affects tau, a protein also implicated in Alzheimer's disease, making families like this scientifically valuable for understanding how dementia develops and potentially how it might someday be prevented or treated. 

Robert Kolker is a contributing writer at The New York Times Magazine and the #1 New York Times bestselling author of Hidden Valley Road, which was an Oprah's Book Club selection and a New York Times Book Review Top 10 book of the year. He is also the author of Lost Girls. The Vanishing Family is published by Doubleday on September 29, 2026. 

The Vanishing Family — official publisher page

*Robert Kolker photo credit: Jeff Zorabedian

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SPEAKER_00 0:00

Welcome to the Causes or Cures Podcast, your gateway to understanding health and groundbreaking medical research in a fun and easy to understand way. With Dr. Eeks as your host, join us as we sit down with the world's leading doctors and scientists to unravel the mysteries of health. From practical tips on well-being to the latest breakthroughs in medical research, we cover it all. Don't forget to subscribe. Now, let's ignite our curiosity and together dive into today's episode.

SPEAKER_02 0:30

Imagine being told that you have a 50% chance of inheriting a genetic mutation that could cause dementia in middle age. There's a test that can tell you whether you carry it. Would you take it? Today's guest on causes or cures is Robert Colker, the number one New York Times bestselling author of Hidden Valley Road and Lost Girls. His new book, The Vanishing Family Love, Fate, and the Quest to End Dementia, follows a Pennsylvania family living with an inherited form of frontotemporal dementia, or FTD. Some members of the family choose genetic testing. Others decide they'd rather not know. And the mutation doesn't simply threaten memory. FTD can change behavior, judgment, personality, and relationships. Sometimes long before a family understands that what they're seeing is a disease. Robert and I talk about what it's like to live with that genetic coin flip, the decision to have children, whether knowing your future is actually better than not knowing, what neurological disease tells us about who we are, and why this one family's rare mutation could potentially help scientists understand dementia far beyond their family. Hey everyone, I'm Dr. Ekes, and this is Causes or Cures. Give me a few seconds while we connect to Robert. Alright, everyone, we are connecting with Bob Kooker, and we're gonna talk about his book, The Vanishing Family, which I just told him I finished yesterday because I had to get to the end of it. It's a very good book. But Bob, thank you for joining Causes or Cures. And I thought, could we start like could you introduce yourself to listeners who may not know who you are and how you got interested in writing a book about a family who had this mutation for frontal temporal dementia, FTD?

SPEAKER_01 2:32

Sure, I'm happy to. I'm very happy to be uh talking to you today. Thanks a lot for having me on. I'm a career journalist and nonfiction author, writing for years for New York magazine, and this is my third nonfiction book. More recently, I've been at the New York Times magazine. And over time, the stories I've been writing have been kind of research-heavy stories that that are narrative, that tell the story of people going through difficult situations. I was never the guy who wrote about, you know, the mayor or the president or a movie star. I was writing about ordinary people who were caught up in something extraordinary. And quite often I was writing about their entire families, and I keep drifting back to the family subject over and over again. My last book, uh Hidden Valley Road, was about schizophrenia. And the family that's featured in the Vanishing Family actually read that book and contacted me. They said that they had uh inherited a genetic mutation where everybody in their generation, all nine siblings, were born with a 50-50 chance of getting early onset dementia and there was no cure. And, you know, such an awful situation, I couldn't imagine it, and it kind of took my breath away. But it was what they said next that that really got me wondering about the scientific part of it, because they said that unlike schizophrenia, which is extraordinarily extraordinarily complex, and or Parkinson's or Alzheimer's, which are also very complicated conditions, they know exactly what the cause of their disease is. It's a single genetic mutation. And that kind of stopped me cold because I had just spent years writing about schizophrenia and trying, you know, to make sense of all the competing theories about what might cause it, and seeing that there was no answer just yet. And I said, wait a minute, you guys know the answer? And they said, Yes. And I said, So you could look at it on a slide or on a computer screen, like this is what this is the mutation that's causing the illness. And they said, Yes. And I said, but aren't we living in the age of CRISPR or genetic editing? Uh, can't um, can't someone zap this mutation and can't we be can't you guys be cured by lunchtime tomorrow? What's going on here? And they said, we would like to know the same thing. And I said to my editors, what this is a story about what it's like to like to be living in the front lines of the genetic editing revolution. Who gets to be first to benefit from these miracle cures that for 10 years now we've been saying since CRISPR became a thing, that we're going to cure everything? Well, who gets to be first? Who who decides where to put the resources? Is it a bureaucratic decision, a political decision, a medical decision? Is it about money? And my editors came back and said, but what's it like to actually emotionally be a member of this family? And that brought me back to my what I've been doing my whole career, which is writing about human beings going through difficult situations. And this situation, it again, it took my breath away. Each of them had the opportunity to take a test that was like looking into a crystal ball. Each of them could tell their medical future. They at an earlier age would know, but if by their 40s, they would start to lose elements of their personality. And that became really the story of the book. The book reads like a family story with deep dives into each person in the family and how they react to the same set of circumstances. Everybody has a different answer to the crystal ball question. Everybody deals with it differently. You spend the book wondering when they'll get be diagnosed, what decisions they will make, what hope there is for a cure, and lastly, what this has to say about all dementias, including and especially Alzheimer's, because this family's illness could provide a backdoor toward coming up with really vital treatments for Alzheimer's if only people paid attention.

SPEAKER_02 6:19

Yeah. So let's get back to that because it is like a genetic coin flip. It's like you have a 50% chance. And as you go through the book, you have like it's almost like you have anxiety for the person, like, oh my god, they're gonna find out, or they they're putting it off. You know, and you start with the kids and then you talk about their kids even going through the same decision. So I have to ask, you know, as a reader, I tried to put myself in their shoes, and I'm like, what would I do? So I was curious, as you, you know, wrote the book and were talking to the family members, what would you do? Would you want to know? Would you take the test if you were in a similar situation?

SPEAKER_01 6:54

It's a really good question. I think my initial impulse was that I want all the information all the time. You know, I I I'm a reporter, I want information. So I would want to know immediately. But then as I got to know each individual member of this family and learned all their stories, I I saw how everybody's answer had a real rationale. Like nobody was, nobody was out of their mind. They all had good reasons for knowing or not knowing. And I I guess the way that I would put it is this let's say you had grown up with one of your parents having this condition and them not being diagnosed with it. And so as a teenager, you watched your mother slowly change and lose vital aspects of her personality, become more impulsive, uh, be more compulsive, become more apathetic, stop caring about the people she loved, and nobody knew what to do about it. They thought it was depression, or maybe they thought it was uh alcoholism, but it wasn't diagnosed as dementia because this particular kind of dementia isn't doesn't affect memory first, the way that Alzheimer's does. And and let's say that was the worst possible time of your life, and and and you made it through only out of by luck. And then a few years go by, and then suddenly in your 20s, you learn that you can take a test that will tell you if you're gonna have it too. You may want a few years of of grace, like you might want you know to spend some time actually having a life and not thinking about the future. You might want to avoid having that decision. And then that let's say a few more years go by and you have children of your own who you conceived and gave birth to before the diagnosis. So you didn't know about the coin flip before you had the kids. And let's say uh you realize that if you learned about your genetic future, about your your future, then that would suddenly color the lives of your kids and that your kids would suddenly be going through the same thing that you went through as a kid. History would be repeating, only it wouldn't be happening to you, it would be happening to them. That's a nightmare, another nightmare that you might not want to possibly engage with until the last possible moment. And so, you know, you delay the message the situation a little bit longer until you want to know, until finally you're ready and you want to know the truth. But in in those intervening years, ten years have gone by, let's say, and you've spent ten years trying not to think about it. But of course, you can never not think about it. It's always on your mind. You wake up in the morning and you can't find your car keys. Is this the beginning of the end? You know, you get into an argument with someone at a party. Is your personality changing? There is no way not to think about this. And so the toll it takes on all of them is really quite considerable. But I'm I'm concerned listeners might think this is a downer of a book. It's very, very sad, but there's also amazing hope in it. The the the devotion that family members have toward one another, the things they do for one another when the chips are down is just inspiring. And of course the medical progress that's now being made is also inspiring.

SPEAKER_02 9:53

I agree. I mean, I was yeah, it's heartbreaking, but it's also I agree. It's also very hopeful. And like what the family's doing in terms of rallying scientists and getting people interested and um just continuing to go get checked up at like the mayo clinic or if they're still doing it, it's just like wow, they're like contributing a lot to science just by doing that. I did want to ask you when it came to the siblings and and and the children taking this test. And you know, you talk about people once they kind of get over a certain age and they're doing good, like Sue, for example, or just not a character in the book or a person in the book, and it's like, okay, we have no symptoms, and some people decided not to get a test. And I was curious, is that a solid assumption? Like if you make it past a certain uh time frame, you don't have to worry about having this mutation. I'm just curious because I'm not sure of how like, you know, FTD works. You know, I'm sure there's variations in symptoms and that kind of thing. But it's a is it a fair assumption? Like, okay, we didn't get it, now we're in our 60s and 70s. Ah, don't need to get a test because I'm still doing okay.

SPEAKER_01 10:58

Daniel, thank you for the chance to talk about this side of things. I think listeners here who who know about the science of dementia know that there is no single one dementia and there's no single one FTD, and that they're all based on different possible mutations, and that they um are quite often sporadic. Sometimes they're not even inherited. But in this particular family's case, they have an inherited mutation where they have that coin flip. However, while there is no cure at the moment, and while that coin flip is real, nobody really knows the level of penetrance, you know, the the the age of onset. It looks, you know, if you let's if I were 28 and I tested positive for this mutation, I would know that if there's not a cure sometime in my 40s or 50s that I would start changing. But you don't know anything exact. And who knows, maybe someone like Sue, who you mentioned, who never gets tested and then is now in her 70s and just assumes she doesn't have it, maybe, maybe she doesn't have it. Or maybe one day she'll be 90 and she'll pass away and they'll examine her brain and they'll see that she had a low level of penetrance of it all the entire time and that people just never noticed. There's so much we don't know. And I think that's one of the things that got me really animated as I was researching this book. It's that we you see a lot of headlines about dementia and Alzheimer's, and I think they, in the aggregate, unintentionally give people the impression that we know more about these conditions than we really do. People talk about plaques entangles and about the beta-amyloid protein and the chow protein. We know that those exist in the brain samples of people who have died from what we call Alzheimer's, but we don't know what they do. We don't know where they come from, we don't know how to stop them. And we don't know if it's a good idea to stop them. What if it's something upstream from that that is causing the aggregation of these proteins? And and that the proteins will just come back anyway. There's so much we don't know, and so much we're doing is based on assumptions, based on assumptions, based on inferences. And that's how science works, obviously. You test hypotheses, but but we're all we're all in a gray area on this issue.

SPEAKER_02 13:12

Well, as as I was reading that in your book, it reminded me I had a neuroscientist come on and he talked about how Alzheimer's can sort of be like an umbrella term almost, and you know, you there could be vascular issues contributing to you know the loss of cognitive function and memory. And to your point, it's like, wow, there's a lot we just don't know about.

SPEAKER_01 13:33

It's true. Yeah, absolutely. Alzheimer's is a diagnosis. It's not a you can't look under a microscope and say, yep, that's that that looks just like Alzheimer's. All you can do is say this there are symptoms here that are consistent with the diagnosis we call Alzheimer's. Right. And so um that inference alone is probably right, but sometimes not right. And who knows, maybe a generation from now, Alzheimer's will change into in its diagnosis, and there'll be Alzheimer's A and Alzheimer's B and Alzheimer's C with different causes and treatments. Maybe we'll have more nuance on the situation. Or maybe we'll skip that step and there'll be individualized medicine for everyone, where it doesn't matter what your diagnosis is because we're doing such a granular, nuanced analysis of your genetic makeup that we know how to treat you and your thing, which is different from everybody else's thing.

SPEAKER_02 14:27

Yeah. So another thing I kept thinking about as I read your book was the decision to have children when a mutation like this runs in your family. Obviously a super sensitive issue, but I'm curious, how did members of the family grapple with the question of whether to have children and potentially pass this on?

SPEAKER_01 14:46

The stunning thing about talking to such a large family is you get so much variation in the reactions. You have one person who gets a vasectomy because he says, forget it. You know, I don't even want to think about it. And you get someone else who tried IVF four times and it failed and then got pregnant naturally and just decided to roll the dice and keep and have the child. And then you have other people in the family who aren't happy with that person's decision and judge that person for it. Um, families, of course, disagree about all kinds of things. And so this decision is such a hot button, and everyone is so sensitive already about the illness that nobody wants to come out swinging against the other person. But people are different and have different ways of looking at this. You know, I think a lot about the member of this family who decided to have children anyway, and I think, you know, what it, you know, her rationales are quite interesting. She says, you know, anybody could get hit by a bus at any second. Anybody could have some sort of sporadic uh illness that comes up that nobody can account for or no one can predict with a crystal ball. But just because there is a chance that my kid might have something that changes them in middle age doesn't mean that something else won't happen to them at some other time. And I want, you know, and and why should that keep us from having a family? Why should we why should we be frozen in place on this issue? And I I frankly can see their point of view and understand where they're coming from. They also have decided to choose optimism. They've decided to believe that science will provide treatments for FTD sooner rather than later. And based on my reporting, they might be right.

SPEAKER_02 16:24

Yeah, I can't even imagine being faced with that dilemma, like just thinking about that. But it it it was definitely interesting to see how they all approached the question.

SPEAKER_01 16:36

I'll just add another beat to it in case listeners are saying, What? You gotta be kidding me. You know, this is a woman who grew up watching her mother completely disintegrate in front of her eyes. And now she knows that one day she's going to disintegrate too. And yet she's decided against all odds to have a child. Is that is that foolish or is that incredibly hopeful and optimistic? Is that is that choosing is that choosing life when when so much has already beaten you down in this life? And and uh I'm I'm fascinated by the decision she made.

SPEAKER_02 17:10

Yeah. So FTD can first appear as behavior rather than illness. Like you said, people start drinking, or maybe they'll have an affair, maybe they withdraw completely. There's a personality change. So did that make you wonder how many of us are out there interpreting neurological symptoms as someone's choice or character? And you know, maybe someone sees that happening in their own family, and it's not even on their maybe they're just cur, you know, like that person's being a jerk or something. But like, you know, you don't think about like, is there an underlying cause?

SPEAKER_01 17:43

Yeah, yeah, yeah. Ivan it's a great question. Even before uh we can talk about FTD specifically in a second, but we we live in an era now where some where every now and then a new neurodegenerative condition comes up that um, or perhaps they call you'd call it a mental illness, where people start to think, well, it's not my personality, it's my condition. Like it's I'm not a jerk, I just have bipolar too. You know, or uh, or no, I'm not a I'm not an oppositional person. I'm just socially tone deaf because I have mild autism. And everybody, of course, on TikTok is diagnosing everybody else now, anyway. You know, when I I'm in my late 50s, I grew up in the 80s, so so nobody ever talked about depression or anxiety at all. My kids were teenagers or teenagers now, they're all diagnosing each other all the time. Like you have PTSD, and you know, you have, you know, you are you have anxiety and you have depression. So there's a fluency now that that allows for people to think to to um pathologize everything and make everything scientific. And, you know, that sometimes it's not right, but sometimes it's not wrong. You know, you look at at the epidemic of mentally ill homelessness and um and addiction in in our society, the the revolving door of people who go from the streets to the jails to the hospitals to the streets and then back to the jails again. And how many of those people have severe mental illness and how many of them might have an actual brain disease, a neurodegenerative illness, something that is affecting their cognition or causing them to compulsively drink and self-medicate? What don't we know about these people? And the researchers that specialize in FTD, they ask this question all the time. They drive to work and they see a homeless person and they think, is that bad choices or is that a brain that's on that that's shorting out in some way? FTD is amazing in that sense because it really doesn't look like Alzheimer's. It's not like you start to forget names and places or your car keys. It's not like your cognition even necessarily is diminished. It's that your basic emotional processing is changed. So you can stop caring about things that you loved once, or you can start, you also become compulsive. So you just decide to have an affair because you've lost the ability to think about social consequences or embarrassment or shame. And it's misdiagnosed all the time. So people with FTD, there might be, I don't know, 60,000 confirmed cases in the United States, a very small number, but there might be many, many more times that number just because it's such a hopeless illness, and so little was known about it until recently that people haven't diagnosed it or they've misdiagnosed it as addiction or as depression, as mental illness. And you see that in the Vanishing Family. This family, everybody's been misdiagnosed at one time or another. Oh, it's not nothing's nothing's matter with her except her divorce. Yeah. She'll bounce back. She's a smart person. And then she doesn't bounce back.

SPEAKER_02 20:44

Did writing this and working with this family make you uh think differently, or did your view evolve about what makes a person who they are?

SPEAKER_01 20:53

Um It's a great it's a it it it I kept landing there over and over again. The Vanishing Family does end up including a discussion of what makes us who we are and what happens as we change. And yes, these people change drastically, but don't we all? You know, my my dad's about to turn 90. He was a very different guy when he was 40, very different guy. We all are going to change. And then illness changes us drastically, and it doesn't have to be a brain illness. Cancer changes us, autoimmune diseases change us, they change our outlook on life, they change our sense of what's possible. And then, of course, addiction and depression. That suddenly you you become a different person when you have a diagnosis like this. And so why do I I where this is where I landed? I landed on why do we put dementia in a box? Why is it like this crazy third rail of a disease that we decide, oh, well, God forbid I have that, because then I won't become myself anymore. The fact is, the self changes all the time, and that we're alarmed by how drastic dementia is, but we all have a vulnerability to change. We Are going to change if we are lucky enough to live that long. And maybe that helps us from making some really, really big mistakes about dementia. Maybe it keeps us from thinking about the people with dementia as people who have died before their actual physical death, or who it maybe it alleviates the sense of loss that we have, knowing that the person we understood to be our loved one is now so different. Maybe it's a way to sort of soothe us and let them know that let us all know that we're not so different from one another. We all are vulnerable to change.

SPEAKER_02 22:33

I wonder if it's about, you know, when the other person doesn't like recognize you or remember who you are. And is that more of like a personal insult? Obviously, one that's not intended, you know, than someone going through cancer or someone suffering from an autoimmune disease.

SPEAKER_01 22:51

Yes, it's a it's a shot in the heart and it and it and it's a huge challenge to overcome. The people who become caregivers to people with dementia have a very special set of skills that carry them through it. They're able to, there's research on this that I learned about. You know, they're they're able to seize on the positive aspects and and celebrate the small good things without being dragged down by the bad things. And then of course they can, they they're able to carve out time to cry about the bad things as well. But they um they have a capacity to compartmentalize that and regulate their emotional reactions that makes them different from a lot of a lot of us out there.

SPEAKER_02 23:29

Yeah. That was fascinating in your book to read about who became a caretaker, who said, I can't do this, this is too much, and also who had the capacity to accept care. Uh, because there were variations in that too. Some people were seemed more open to it, others just wanted to do their own thing.

SPEAKER_01 23:47

Yeah. Yeah. And while none of the people who develop severe FTD symptoms really believe that they are sick, they they do have different personalities. Some people are invariably sunny and bright and impulsive and compulsive and and hard to manage, but not and a little chaotic. Whereas other people are oppositional. They want it, they want to be independent. Leave me alone, don't bother me. And and that becomes extremely challenging for the people around them. The family in many ways stays together, but in other ways is pretty is of course shattered by this experience. And to be able to look at a whole family this way, I think offers readers a great, a great variety of information about how this can go down. Um to have a large family was was a an amazing opportunity for a book.

SPEAKER_02 24:36

Oh, yeah, yeah. So reading the book made me think about medical aid and dying. And I've had like a psychiatrist up in Canada came on the podcast to talk about that. It's a fascinating topic in itself. But you know, some of the people in your book were like, if I start to show symptoms, tell me, because then I want to kill myself. And I totally can see that. And it seems very logical that someone would feel that way. And I'm curious, what are your thoughts on that? And how knowing, finding out that you might you have a mutation and you're going to get this devastating disease, like, should you know, medical assistance and dying be on the table? Should someone have that choice?

SPEAKER_01 25:17

I hesitate to say it because it makes the book seem totally sad, but yes, the the idea of ending your life or euthanizing yourself comes up a lot in this book. But but the interesting thing to me is that um everybody who said they wanted it, the the ones who got sick, uh, you know, didn't weren't interested anymore. They're they're they're they're they're cheerful people. They're cheerful people with severe limitations that are incapacitated as people, but they aren't saying um I want my life to end. And and that's an interesting change that that they've experienced. And I've talked to to folks who study other conditions and they see that too. Like how you think you're gonna feel when something happens is different from how you feel when it happens quite often. So if I have cancer, I would just want to end it. And then you have cancer and your thinking changes. I it that that that's interesting to me.

SPEAKER_02 26:12

Yeah. Yeah, I I guess you never really know until you're like in the situation how you're gonna think about it. So this is one family with a rare genetic mutation, but studying families like this could help researchers understand dementia affecting millions of people. And you write about that in your book. And just because this is a science-y podcast, what makes this particular mutation so scientifically valuable?

SPEAKER_01 26:36

It's a captivating thing that really got me uh glued to this family and this subject the entire time I was working on the book. This family's variety of FTD involves a mutation of the MAPT gene, which produces the tau protein. Anyone who knows much about Alzheimer's knows that the tau protein is uh overproduced in Alzheimer's patients. But I think people who know about Alzheimer's also know that for many, many years, that this uh collection of tau in Alzheimer's patients was not considered to be a major player in the development of the disease. Instead, uh researchers have spent decades sort of putting all their eggs in a different basket. They've been studying the beta-amyloid protein. If you've heard about the plaques and tangles that are in the brains of Alzheimer's patients, the beta-amyloid protein are the plaques, the little blotches that are in the pictures of brain cells of people with Alzheimer's. And uh the tau protein are the tangles, these little thready things that are curly cues that are that are inside the brain cells. And so in the Vanishing Family, I tell the long story in between the family story of how science came to put all their chips on beta-amyloid and kind of leave Tau alone for years and years and years. It wasn't a necessarily a um deliberate decision. It wasn't people sitting in a smoke-filled room saying, let's just leave Tao out of it. But what happened was it was a little bit of groupthink and a little bit of practicality because um once once the mainstream science had started to point toward amyloid, anybody who wanted to build a career trying to cure Alzheimer's disease was only going to get a grant if they were studying amyloid. Anyone who decided to study Tao better have good arrangements made to keep their career going without big research grants or big pharmaceutical interests. You had to be a neuropathologist or a clinician of some sort. And so for decades, Tau is sort of left behind in the dust. But then something strange happens. The first thing is that people at Alzheimer's becomes wildly overdiagnosed, that there's a period in the 1980s where Alzheimer's disease and dementia become sort of interchangeable terms. And that if a person has dementia, a lot of doctors start to assume, well, it's Alzheimer's. But it isn't Alzheimer's quite a lot of the time. And then by the 90s, other dementias are identified: uh cortical basal degeneration, uh, PSP, um, of course, ALS has a is a close relative to this. And and quite often they have nothing to do with the beta amyloid protein and everything to do with the tau protein. Scientists call them tau apathies. And this family's FTD is a tau apathy. And we're now finally at a point where science is starting to pivot away from the amyloid protein because they see that it's not the whole story. We have these headline-making medicines that reduce uh the amount of amyloid in the brain, but they only reduce it by a little bit, and the this the disease seems to be slowing down, but it's certainly not a game changer. And some people choose to be optimistic about this and say the barn door is open, and now we're this is the beginning of the end of Alzheimer's. And other people are wildly disappointed. They said, wait a minute, we've been meeting 30, 40 years to medicate amyloid, and this is the best we can do. There's got to be something else. And so only in recent years has science turned and said, wait a minute, Tao, what are we doing? Why are we, why, why aren't we paying more attention to Tau? I went to a conference where hundreds of scientists were delivering and presenting their research on Tao. And um, that this is good news for families like the family and the vanishing family, but more to the point, it turns these families into very interesting potential test kitchens for coming up with a treatment that could help people with Alzheimer's. Let's say you wanted to knock out Tau with a drug. Wouldn't you want to test it on this family to see if it worked? And then if it worked, go after the Alzheimer's folks. Because if you go after the Alzheimer's folks, it's a complicated situation and it might not work for any number of reasons. And so to me, these families offer, these Tau families offer a backdoor, a secret passageway to try and find a potential uh treatment for Alzheimer's that could either complement what's happening with amyloid or surpass it. And and we're we're seeing progress on that front. There are a lot of Tau knockdown and knockout drugs that are in the pipeline by something like seven different pharma companies who are working on it now. And what I'm hopeful for is that families like this will start being able to qualify for testing for these drugs. And hopefully, hopefully five, 10 years from now, uh this sort of FTD will really be treatable.

SPEAKER_02 31:38

Aaron Powell What is available right now for someone who has this mutation? What is medically available, or is it just trying to get in a clinical trial for something?

SPEAKER_01 31:50

There are support organizations available to them where they can they can continue to be researched and they can put their information into registries so that they can qualify for the first drug trials. And those first drug trials are coming soon, not maybe next year, or maybe even later this year. But it's slow. It's slow going. There is no treatment treatment, except perhaps um medication for ancillary effects, like maybe um maybe lithium, if a person's you know mood or behavior is just simply unmanageable. But there is no no treatment and no cure for FTD, which of course makes the crystal ball question that much more powerful for the family.

SPEAKER_02 32:34

Uh I'm gonna go back to I had a neuroscientist on the podcast who talked about exercise potentially mitigating some Alzheimer's risk, but he even he made a point to say that even in people with higher genetic susceptibility, it made a big, a significant difference. But I didn't get the same uh sense that lifestyle meaningfully changed the course of inherited FTD from reading your book. And so did your reporting and research leave you with the impression that genetics largely dominates here, or is there evidence that lifestyle or other modifiable factors can still influence when symptoms begin or how the disease progresses?

SPEAKER_01 33:13

I do think that lifestyle has an effect on when symptoms begin and how the disease progresses. I was skeptical at the beginning because I thought that um this was just doctors telling people to focus on stuff they could control to make everybody feel better. But there is data. There's data that shows that dementia symptoms can, the onset can be later and the progress can be different if you are eating right and exercising right. And that it's anecdotal with the vanishing family, but the earlier generation, this generation's mother who had the illness, she she ate badly and drank and smoked her entire life. And she died of, you know, she had acute, acute FTD symptoms, but only identifiable in retrospect. And but she died of cancer before long before FTD was really diagnosable. Meanwhile, one of you know their one of her daughters didn't really develop acute symptoms until her 50s, and not and not her 40s. So is that good news that she and she focused on her lifestyle. She went on you know hikes and walks every day, and she, of course, she ate a lot better than her mother. And now she's fully symptomatic, but maybe she gave herself 10 or 15 years of additional time. It's very possible.

SPEAKER_02 34:25

That's did the mother, the uh Jean did Jean was she she was never actually diagnosed.

SPEAKER_01 34:33

No, she died in 1990, and then a few years later, one daughter starts to develop behavior like her mother, and people wonder, oh, maybe they just get depressed the same way, or maybe they both are alcoholics the same way.

SPEAKER_02 34:46

Yeah.

SPEAKER_01 34:46

And then and then a few years after that, another daughter starts to display uh similar behavior, and that's when the family wakes up and says, Oh my god, we all might have this. This is inherited.

SPEAKER_02 34:58

Yeah.

SPEAKER_01 34:58

And they they fight for a diagnosis, and then it takes another, you know, many, many more years. They don't get a real diagnosis until 2008. That's how difficult and tricky this illness was and how misunderstood it was. So looking back, they see it's obvious that that Jean was the carrier and that she just didn't live long enough to for science to catch up to her diagnosis. And there are members of her family, an uncle, a grandfather, who also seem to have uh this sort of behavioral symptoms. So the inference is that it it was the whole family line from the mother.

SPEAKER_02 35:36

From the mom. Yeah, and but as and as you read your book, and you did a great job, like you don't know, you can't tell because she has other issues, like you know, the infidelity of her husband, and she's at home, and you're like, man, is she just bored? Is she just like a depressed housewife who feels like she can't assert herself and you don't really know, and like you can't tell, and then you know it's it's interesting. But she ends up obviously it comes from her, and you trace that out in the book, but um it just makes you think, like, yeah, I if I was living with her, I would never even have thought of that. I just sort of thought, like, circumstantial, like this is not a great time right now.

SPEAKER_01 36:11

Yeah, especially in the 80s, like that the whole community is kind of looking at her and saying, Whew, she's let herself go. She really needs she really needs to pull herself together. Yeah. Um, I did write the book, not not to make it a suspense book. I didn't want to exploit the these the situation here, but I did want to give readers a sense of what it was like to live in the moment and not know what the answer was about anything. I think that that was that's a useful thing that narrative nonfiction can do. It can help help you help you go places and be a part of things that you would never otherwise be in and see what ask yourself, what would I do? What would I do in this situation? Would I be like this sister, or would I be like would I be like this brother, or or would I be like their child who decided to do this in the next generation? Everybody gets to try their reactions on for size.

SPEAKER_02 37:00

Yeah, no, you do that very well. Excellent. Like I was really immersed in it, like trying to see, like, see, and I don't even know what I would do if I had the similar situation. It's it's interesting to ask yourself these questions. Last question I have for you. Obviously, you've done a lot of research, you've spent a lot of time with the family. Is there a question you still can't quite shake? Like, do you is there a question that you you still have after all of this that you'd want an answer for? Or something where you're just that doesn't sit quite right?

SPEAKER_01 37:28

I'm very dissatisfied with with the medical infrastructure and the and the governmental structures, lack of focus on rare diseases. Like if you took all the rare diseases together, the the people who suffer from them in this country, it's as many as suffer from cancer. It's um it's such a tremendous demographic. And yet we we don't seem to have the ability to do precision medicine for these illnesses. I just heard yesterday about a drug that became available that could save lives, but the drug the pharmaceutical company dropped the drug because there aren't enough patients to benefit from it. Imagine being one of those people and knowing that the a drug exists that could help you, but that nobody's going to make it. There are a lot of um unforced errors, I think, in our system. And of course, in many ways, our system is the greatest in the world. It it you know MMR vaccines became real largely because of a healthy government-funded or government-supported but private sector uh collaboration. But there are huge blind spots that really annoy me.

SPEAKER_02 38:35

Do you think that we can change that in a meaningful way? Uh or if it's just like, hey, this drug's not going to make us any money and we're just can't, we're not gonna put the investment there.

SPEAKER_01 38:47

There are some funds and charities that focus on what are called orphaned drugs, that that drugs that are that that are exist and are proven, but that nobody's making, but that could help people. So those those funds could be strengthened. That would be helpful. And then there's a there are piecemeal efforts, there are various legislative efforts to try to support research that may not be immediately lead to it, may not lead to a blockbuster drug in the next three or four years, but it's still it could plant the seeds for something that helps millions of people in 10 or 15 years. It's the short-sightedness that bugs me. CRISPR's a great example. The headlines about CRISPR were about 10 years ago, what, like 2015, something like that. And suddenly there was a feeding frenzy and a million startups and billions or maybe trillions of dollars going into businesses for CRISPR cures. And then there were so few few core cures or few treatments over the next five or 10 years that one by one all of these startups went out of business. And and it just you just want to like kick yourself because you the potential is still there. It's just that the timeline in the industry is for five years before profitability. Nobody the these days VCs don't want 10 years before profitability. And so that that is that's annoying and frustrating.

SPEAKER_02 40:02

Yeah. Well, we won't solve that on this podcast, but that'd be nice. This is great. And the book is available to the public sometime in September?

SPEAKER_01 40:12

September 29th. September 29th is on sale date.

SPEAKER_02 40:15

Okay, great. And it'll be on Amazon and everywhere, I guess, the books are sold.

SPEAKER_01 40:20

Yes, everywhere.

SPEAKER_02 40:21

All right. Well, I I encourage everyone to read it. It it was a a really great read. What are you working on now? Uh are you writing more or researching?

SPEAKER_01 40:30

Yeah, I'm still writing about families. Um one possible magazine story involving parents who are in jail because of stuff they did to their kids. And then another story, and then a possible book idea about family uh family estrangements. So I'm I'm curious. Continue to write this about uh families.

SPEAKER_02 40:49

Awesome. That's it's it's a great niche. It's it's very interesting from a public health and medical perspective, too. Um just to see it line up. But well, thank you, Bob, for coming on. I appreciate it. And uh good luck with uh the book launch and everything. I'm sure it'll be successful.

SPEAKER_01 41:04

Thank you, Doctor. I agree, great talking to you.

SPEAKER_02 41:06

Yeah. Okay, take care. Thanks.

SPEAKER_01 41:08

Okay, bye-bye.

SPEAKER_02 41:10

Bye. All right, everyone. So, what'd you think? I personally love the book. And I think what stayed with me most is that it's not really, well, it is a book about dementia, but for me, it's about what people do when they're given the possibility of knowing something about their future, something that could be potentially devastating, that most of us never get to know. Like, would you want to know? Once again, Robert Koulker's new book is The Vanishing Family: Love, Fate, and the Quest to End Dementia. The link to buy the book is in the show notes. I really encourage it. It's a good book. It kept me hooked. Uh, and if you enjoy this conversation, follow Causes or Cures wherever you're listening. If you like Public Health is Weird or WTF Health News, subscribe to my newsletter or my YouTube. Um, I just told a story about rabies on my YouTube. Uh yeah, from my kitchen, uh, that you guys might really like. So check it out. And now it's time for the closing quote. This is from Albert Einstein. Uh I never think of the future. It comes soon enough. Uh I'm Eeks. Thanks for being here. I'll see you next time. Goodbye for now.