ome of the most valuable insights a person can receive when facing familial Alzheimer's disease (FAD) come from the stories within our community.
In this interview, we speak with Jetske van der Schaar, a public advocate and strong voice for FAD, even appearing on national television in the Netherlands to share her genetic status and break the stigma surrounding this disease.
In this interview, Lindsay, founder of Youngtimers, speaks with Jetske about:
Deciding to learn one’s genetic status
Sharing FAD genetic results with others (and the public)
Lesser-known impacts of the disease and genetic news
At the time of her interview, Jetske was a PhD student at Alzheimer’s Center Amsterdam, where she investigates medical ethical dilemmas in early stages of Alzheimer's disease. She regularly writes and speaks about hereditary dementia. She is also the author of Eeuwige Lente, which means eternal spring, a story about her life and struggle for hope, and the personal impact of FAD.
This conversation reflects the unique perspectives and experiences of Jetske van der Schaar as shared with us on December 9, 2021. Her story is her own, and it adds a valuable chapter to the diverse narratives within our Youngtimers community.
This transcript has been edited for clarity and readability. For the full interview, watch the video.
LINDSAY: Thanks you for being here today. When you shared your story at the DIAN conference in 2019, you received a standing ovation. I remember looking around and seeing everyone nodding their heads, clapping, many with tears in their eyes. There's something so powerful when you hear somebody put into words things that you feel. Thanks for having the strength and bravery to be a voice for so many in our community who can't speak.
Can you share some of your story with us?
JETSKE: The story I told at the conference was like a cry from the heart. I knew my grandfather when I was a kid, but he was already sick. He died very young when I was still a little girl. Afterward, I grew up similar to everybody else in my neighborhood.
Alzheimer's and dementia wasn't really a topic in our family until my uncle got sick. He was my mother's only brother, and my mom recognized the symptoms immediately. She had always known my grandfather's young illness was not normal. Back then, she had donated his brain for research. Even though this was not so long ago, we didn't know about genetic causes of Alzheimer's disease.
When her brother got sick with similar symptoms, she went looking for answers again.
It turned out it was a familial [Alzheimer’s disease] in our family, and she had a 50/50 chance of inheriting this gene. She was struggling with, ‘Do I want to find out my status or do I not want to find out?’ In the end, it turned out she didn't have to find out, because she also got ill when she was around 55 [years old].
[Editor’s note: Members of the Youngtimers community often refer to having “the gene.” Throughout this interview, when Jetske refers to “the gene”, she is meaning “a genetic mutation that causes familial Alzheimer’s disease.”] .
Jetske van der Schaar is a public advocate, a researcher, and a strong voice for familial Alzheimer’s disease.
When all of this was happening, it felt like we were the only family dealing with a parent who got sick at such a young age. I didn't know any other families dealing with these challenges, let alone a family dealing with the hereditary type [of Alzheimer’s disease]. So it felt like we were the exception, and I couldn't talk to anyone else about it.
In the end, after years, I got in touch with a support group for children of parents who had early onset dementia. Even there, there was no one with a familial cause. Even in this little group of exceptions, I was the exception. And it felt like we were invisible, unseen. We didn't matter, and it wasn't important.
LINDSAY: What inspired you to talk about your own genetic testing journey publically?
JETSKE: My only reference was this character from this television series called House. There was this character called Thirteens, and she was struggling with Huntington's and whether she was carrying this gene or not. That was my only reference.
We were scared to talk about this because we thought, well, if people know this runs in the family, will they want to hire us? Will they want to have relationships with us? Will they treat us differently as damaged goods or something? It felt like this giant scarlet letter A.
Years later, I visited the clinical geneticist, wondering whether I wanted to test and find out my own status. I asked, can we get in touch with anyone else who's dealing with this? Or with anyone who's been through this process? What is it like to find out your status? What's it like to live with it, if I do have the gene, or if I don't have the gene? And they told us, we can't tell you. We can't bring you in touch with anyone else due to privacy reasons.
It's so isolating to feel like you are the only one struggling with it. I thought it must be my fault that I find it so hard to deal with it. There must be something wrong that I can't find a better way to live with it, and to go on with this. All this loneliness, and feeling awkward, and not knowing how to relate to this is not necessary. It's an unnecessary burden that we can take away.
Because when you do meet other people dealing with the same challenges, it doesn't change the disease, but it does make you feel like, okay, I'm not the only one. You're not alone anymore. And that was the reason why I wanted to share my story. Even though I was scared. I thought, perhaps I share my story at this conference and they all say, ‘no, it's totally different for me.’ But, it was like a cry from my heart, to find out if anyone else recognized this because it was my need to find similar souls, and to share this, and to find out how we can help each other to deal with this.”
That’s my main motivation to share my story. Because even now, when I give a lecture somewhere, after everything is finished someone from the back approaches me when I'm on my way out, and says, ‘Can I ask you something? I'm struggling with this, too, and I don't know who else to talk to.’
I think there are many more people like us out there who don't know where to find their answers and their help and their support. We cannot cure the disease yet, but we can do something about this isolation. And I think that that's one of the things that drives me.”
LINDSAY: A lot of big things have happened in your life. You told your story on the biggest stage, national TV. You also have written a book. And you shifted your career; you're now an Alzheimer's researcher.
What led you down this path of advocacy and research?
JETSKE: Yeah. The disease has changed a lot in my life. Some things for worse, and some other things for better.
At first, when I found out my own genetic status, I didn't tell anyone, because who I told was the only control that I had left over this disease. So I thought, I'm not ready to share it yet, because then, it's out of my control. Also, I didn't want to burden my family because my father was taking care of my mom, and that was weighing hard on him. My mom was still alive. She wouldn't understand, but she would feel the emotion. I also have a brother and a sister, and I didn't want my decision and my outcome to influence them.
“We cannot cure the disease yet, but we can do something about this isolation. ”
I thought, ‘it's not like I'm never going to tell them, but I'm not going to tell them now.’ It was, we thought, our last Christmas with my mom around that time. So I didn't tell. And because I didn't tell my family, I didn't tell my friends. So I didn't tell anyone.
But I thought, ‘Well, perhaps I can do something with this information.’ So I went on looking for information on the internet. I was trying to get in touch with neurologists and professors. After a very long search, I found this professor at Alzheimer's Center Amsterdam. He was like the first person in my life who said, ‘Oh, this is very interesting, and I know a lot about this disease.’
He had all the answers that no one had ever been able to give me, and then some. He said, ‘There's this DIAN study and you can take part in it, perhaps.’
[Editor’s note: DIAN stands for Dominantly Inherited Alzheimer's Network. It’s an international research partnership of leading scientists who are studying familial Alzheimer’s disease. Learn more about participating in research.]
But we didn't have DIAN in the Netherlands, because we didn't think there were enough families to participate. Most studies have an age of 55 or even older, so I didn't qualify for anything else. I thought, ‘Well, I have to get into this DIAN study.’
I found out there's this huge dilemma. Because for research, people like us are very valuable… they know we'll get sick, they know when we'll get sick, and it's a perfect opportunity to study the course of the disease and to try to stop it before we become symptomatic.
But on the other hand, families don't know about this research. I had to try so hard to find out this information, so I thought there must be more people not knowing about this who are desperate to do something.
So I was harassing everyone I knew, this professor in Amsterdam, and then people at DIAN. We have to be more vocal about this. We have to reach those people because I think the families are there and the research is there, but the researchers don't know where the families are and the families don't know about this research. So we have to break this.
After some time, this professor was invited for a Dutch television live talk show, Prime Time. And he said, ‘I'm going to talk about familial Alzheimer's disease. Are you willing to come with me?’
I was like, ‘no no, I'm not going to do that. How can I be on television and talk about this and say, this runs in my family, without answering the immediate question whether I carry this gene, too?’
But I knew somewhere deep down that I was going to do it. Because my grandfather and my uncle and my mom weren't able to tell their story. And I thought, it would have been great if someone else had done it, but if I'm asked to do this now, then perhaps I should.
I was very, very scared. I thought about everything that could go wrong. Nobody wants to hire me for work anymore. My friends will find it awkward to be with me.
The one thing I hadn't considered was the enormous positive impact that it had. Many people had seen it, and many families came forward and said, we also have this in our family, and we also want to join research. There were more than enough to start DIAN in the Netherlands.
Also, it made the whole subject discussable. So it's easier to talk about it now. People have seen it on television and they have had the chance to to think about it and then to approach this subject.
After all these years, I have somehow learned to talk about this a little bit. Where I was very scared of stigma and isolation and that people would let me down, the exact opposite happened. There was this massive outpouring of support, lasting support for families like ours. So that was - Wow! Unexpected result.
LINDSAY: You know, it's really incredible. You were like, it'd be great if somebody else did it, but there is nobody else. That takes so much strength and bravery. So thank you.
JETSKE: I think it's also sort of desperation. I didn't know what else to do. I didn't have any other opportunity to do something about this. By this time, I had asked all these doctors and asked all these people, and searched everything online. I didn't know what else to do. This was my last resort. So I thought, ‘Okay, I'd rather do things that I regret than not do things at all.’ So, okay, let's go for it.
LINDSAY: So you received all these letters and flowers, and you had all of this community now, all of a sudden.
Was that the reason you decided to write a book, and start research in Alzheimer's disease? How did you make those decisions?
Jetske’s book, Eeuwige Lente, was published on November 1, 2020. It is written in Dutch.
JETSKE: Yeah. Well, I'd written a book before, and when my mom got sick, I knew I wanted to write about this. I realized we were in this very unique position and something was happening to us. I knew it was different from what was happening to other people, and it was different from sporadic or late onset [Alzheimer’s] disease, which is not to say one is worse or better than the other, but it's different.
We ran into unique challenges and troubles. I thought it was worthwhile to share this, so other people would understand better what was happening to us. Other people may recognize themselves in it, perhaps, or learn something from it, because from all those challenges that the disease throws at us, we also learn a lot.
I thought, there's a story here, and I think it's a story that needs to be told. When you're in research, it's about statistics and tables and figures. But a story can be much more powerful. And if people can identify with the person, it can have an enormous effect. Once people realize I'm not so very different from you, I could have been you… I think that's when you start to connect. And people feel, this is about all of us, and it should matter to all of us. I believe that's a powerful way to bring about change. So I thought, I want to share it.
And in a way, it's also a tribute to my mom and my father and the way we grew up. It's a testament of who my parents were, but also who I am. I felt it was important to write that down.
LINDSAY: The FAD community often struggles with this big question: to test or not to test. How did you know you were ready to find out your mutation status? And having gone through it, knowing what you know, what would you tell others?
JETSKE: It's difficult because ultimately, it is a very difficult decision and a very personal decision.
So I want to stress that I don't give advice. I don't think we should do it, I don't think we shouldn't do it. I do think it should be an informed and deliberate decision.
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And I think that's one of the struggles, because you don't know what is on the other side of testing, and there's so little information available from people who have gone through all of this.
At first when this decision was on the table, we had a very short conversation saying, ‘Why in the world would you want to know if there is nothing you can do to stop this disease?’ Immediately, my mom and my brother and sister and my father said, ‘Well, no, of course we don't want to know.’
But then, my mom got sick and Alzheimer's came into our life. And, when I was looking at my mom, I was wondering, ‘I have your blue eyes. What else did I get from you?’ I know that doesn't influence my chances of having this gene, but it did influence me. I was wondering, is this my own life that's playing before my eyes?
At some point it felt like my life, my future, was this road that was splitting in two tracks. One was going towards happily ever after. And the other way was this short and awful dead end road. I found it very, very difficult to deal with that, because it's a 50/50 chance.
It's very difficult to navigate your life like that. There are so many tiny moments in the day that you feel when this comes up. When you go to a concert and you have to decide, am I going to wear earplugs to protect my ears? I immediately thought, ‘Will I need my ears? Will I get old enough to get trouble from this?’ Or when you're thinking about starting a family, or even at work, when you're in a meeting about pensions? I was wondering, ‘Will I need it?’ And it was in all those tiny moments in every day that the question was on the table.
At some point, I realized that it was not 50/50 in my head. Somehow this balance shifted, and I was preparing more for the bad outcome than for the good. After years and many conversations with my partner, I realized perhaps I have more to gain than to lose. Because if I don't have the gene, I don't have to worry about it. If I don't have it, I can't pass it on. It's all gone and good. And if I do have it, perhaps then I can focus my thoughts and my worries and my energy into doing something about it.
“At some point, I realized that it was not 50/50 in my head. Somehow this balance shifted, and I was preparing more for the bad outcome than for the good. ”
I don't know when you're ready. I don't know if you're ever ready. But I do think it's not the question of whether you want to know or not. Because in the end, you will find out. I think the better question is, do you want to know?
For me, it was this point in time that I realized I have more to gain than to lose. And, if I do carry the gene, I can try to do something with that. Even though I can't cure it yet, I can make decisions and shift my priorities and try to do something with that.
It was devastating to hear the news. It was awful. And it's like an open wound that never heals, that is changing over time. And, even now, I'm not entirely sure what I know and what I feel about it, because it changes. The raw experience of those first days and years, they transition into something different. Now the pain is sometimes different and the worries are different, and I'm sure in a couple of years time, it will be different.
But I also think there's such a thing as growth, and we are much more resilient than we think we are. And we can find a way through all of this, as horrible and as awful as it is to know what lies ahead, and however devastating this knowledge is on bad days, it also reminds me… death is what gives meaning to life, and what makes it so valuable. Sometimes, I think the disease reminds me that I have to enjoy today, because I don't know about tomorrow, and no one knows about tomorrow.
It's not to say, ‘Oh, look at this silver lining.’ But I do think there's two sides to it. Sometimes it helps me to make choices and prioritize. And sometimes it's to say, ‘I'm not going to do this. I don't have eternity. I'm not going to waste my time on that.’ I feel like I reach those decisions much faster now. That's not to say that I can't get worked up if someone didn't put the garbage out. Those little things are always there, and sometimes I get lost in it, and a week, a month has flown by and I feel like, okay, ‘what did I do with my time?’
But every now and then, it does put me back with my feet on the ground and makes me also incredibly grateful for the life that I have, and the time that I have. And all the joy and love and wealth in many ways that I have in it. That's the other side. There’s a reminder.
It puts a pressure on life to live it, and to make something of it, and to make it worthwhile, and to do the things that you want to do, even if you are too scared to do them, because that's better than not doing it at all.
Jetske has found that knowing her FAD genetic status makes her grateful for her life, and the time she has.
LINDSAY: What have you learned about sharing genetic news with others?
JETSKE: There's many things that I didn't realize before testing, because I thought the big question is, do you want to know or don't you want to know? And that's what I tried to prepare for, as good as I could do that. But what I didn't realize is that the other question, do you want others to know?
One of the reasons it's so difficult to talk about this is once you say there's a familial disease in our family, the first thing people say is, ‘oh, okay, and do you have the gene?’
Before I got tested, I could say honestly, I don't know. But after I had been tested, I still got this question–sometimes in the middle of the street, or at a party, or the most inappropriate places. Then I had this choice. Do I tell something that is very, very, very personal, to someone that's not so close to me? Or do I lie? That's a horrible decision. It took me some time. After that, I realized the best strategy is to say, ‘Well, would you want to know?’ And then the whole conversation diverges. And that was my way out.
Now that it's out in the open, pretty much everybody knows it. Sometimes it's still difficult, because when I meet someone new or I don't know whether they know, and there's always this awkward moment where they say they know, or where I think they know and they don't know, or I have to tell them. At some point it comes up, because it's also the reason I made some big choices in my life.
LINDSAY: You've said that once you know your status, it almost becomes a burden. Keeping a secret and wanting to grant people space to live their life, but also wanting to confront the disease and have their support, so there can be a real struggle there.
What advice do you have for others who are considering whether to talk to friends and family about their genetic results?
JETSKE: Yeah, I think that's also an incredibly difficult decision. Because this is a familial thing. And one of the challenges of talking about this is you can't just tell something about yourself. It's always something about your family, about your brothers, about your sisters, about your nieces and nephews and your parents. For me, that was also an important reason not to talk about it, because I didn't feel it was my place to share something about my family.
Within families, sentiments always differ. There's always one who wants to make it public. And there's always one who doesn't want to and who wants to keep it private. And those two things don't go together. You can't respect both. One has to yield.
I've been on both sides. Because for nearly three years, I hardly told anyone, I didn't tell my family and I only told a few friends. It's this very, very, very intimate thing. It feels like you're telling something that's much too personal. But on the other hand, it's something that defines me, whether I want to or not. It puts such an enormous stamp on everything I do.
When I didn't tell people, it felt like I was under this bell jar. People saw me, but I felt like they didn't really see me. They don't really know me. They don't really know what's going on in my mind, and why I make the decisions I make and why I do the things that I do. And they don't, they don't know me. It's very hard to have deep, meaningful relationships with people if there’s such a big part of your life they don't know about.
It took me three years to learn how to talk about this because it's so very, very sensitive. I remember the first times I told my peers that my mom had early onset Alzheimer's disease. There's this awkward pause, and people don't know what to say. They don't say anything at all, and never get back to the subject. Sometimes I wonder, did I actually tell them or was that just a dream? Or sometimes, people make these inappropriate remarks and say, ‘Oh yes, Alzheimer's, I know that. My grandmother had Alzheimer's when she was 98.’ And it's not the same thing. Sometimes, people point out the silver lining and they want to solve it or they want to give advice.
At first, whenever someone said something that I felt wasn't right, that was it. I couldn't go on. Then, I didn't say anything anymore, and it took me even longer to try another time and to try another time.
It's something that I've had to learn how to talk about–how to find the words, what words to use, how to say this, but also how to help other people deal with me, and how to find it in me to understand that they didn't understand me.
After a lot of talking and a lot of writing, I realize it's just difficult for me and it's awkward for me, and it's just as difficult and awkward for the other person. However much you want it to be different, it's up to us to help other people to deal with us.
I've learned to say, ‘Okay, this is a sensitive subject, This is the way I want you to deal with this.’ I tell them what I want and what I don't want. I always say, ‘You can ask me anything, and if it's over the line, then I will tell you and I won't answer your questions. It's okay. You can approach this subject anytime. And I will say if it's not a good time.’
“That's my way of dealing with it. By now, I think I've had every possible reaction, including people who deny the existence of such a gene or who say, ‘Well, it's not definite that you will get the disease.’ Or people who come and help you with cures or remedies and will say, ‘Oh, if you do this, or if you do that, you can turn the gene off, and everything will be alright’. Then there are people who say, ‘Well, don't worry, if I go outside, I can run under the bus, too, so it's not a big deal.’
It takes empathy for me as well, to realize it's their way of struggling with this. So there's two things you have to learn. One, how to talk about this, and two, how to understand how difficult it is for the people around me. Because I do think it's an interaction. And the difficulty of talking was just as much my difficulty as it was their difficulty. It's hard to learn that. The only way I think is to try to keep on trying. and I do think it does get better.
Before, when I thought of my future, it was like this little black forest, and I was scared to go in there. And even if I tried, I could do one step, two steps. And that was it. And I was running back because I couldn't go any further. But if you try and if you keep trying, you can shift your toe a little bit forward every time. You can get a little bit further before you're too scared and run back. And I think with talking about it, it's very similar. You just have to try and keep on trying. At some point it does get better.
And that's the same for the pain. I think you can learn to deal with it and you can, learn to navigate around the sharpest parts or the things that you don't want to touch. And every time, you can get a little bit closer. You can learn how to deal with this and also how to help other people deal with this. At least that's what it's like for me.
LINDSAY: Your analogy about the forest is spot on. Stepping into a dark black forest is really difficult, just like confronting the disease.
But maybe over time, you’re learning - okay, I need to bring a flashlight. And I need to bring a compass, I need to develop these tools that make it easier to be in this space. I think that's such great advice.
JETSKE: Yeah. And you'll be surprised what you find there, because that's also a thing I didn't realize. Because I told my status, there's also this other reaction: people tell me things.
Sharing this very personal thing about myself also deepens my connections to other people, even sometimes strangers or people that I hardly know. There are so many beautiful conversations that have started from this, and so many beautiful connections that I have formed. Just because you know each other better, you know something fundamental about each other.
If I tell something about me, someone else will say something too, and that bonds. It also makes for very meaningful and deep relationships. So, I think everything has two sides. Sometimes it's hard, but sometimes it's also beautiful.
LINDSAY: You said that it can be strange and scary for everybody to know what your greatest weakness is.
There's a tendency in the media to paint the darkest picture and describe people with familial Alzheimer's disease as helpless victims. What do you want people to know about this disease that doesn't often get heard or said?
JETSKE: This is perhaps the most difficult question. What people don't know about Alzheimer's disease or dementia is, while it is difficult and it is hard, I do think there's beauty in it as well. Some of the moments with my mom, some memories of my mom are when she was ill, and because everything was difficult, those small moments were so, so valuable. Even when she was sick, she taught me so much about the meaning of life and what is really important in life. When she lost who she was and what she could do, somehow she moved towards the essence of life and our relationship. It felt like all the clutter and unnecessary things were peeled away and somehow, what was left is what was left. Just connection and touching each other and laughing together.
I think in a way, the disease teaches us that about life as well. It's not about what type of car you buy, or if you wear the right clothes, or if you say the right things. It's those very essential moments. In addition, especially the familial kind of Alzheimer's disease, it throws a lot of challenges our way. But what we forget is how much we learn from that, and how resilient we become, and how strong the disease makes us. And, how that teaches us to deal with other stuff as well. So in that way, despite all the hardship, it also made me stronger and made me believe, ‘Okay, if I can overcome all of that and if I can live through that, then surely I can take on this little challenge today.’ So it also gives us strength.
“Sometimes, it feels like you’re let in on a secret about life. You know that it’s finite, and you know that you don’t have forever. ”
And sometimes, it feels like you're let in on a secret about life. You know that it's finite, and you know that you don't have forever. And you know that the future is not promised. It makes you cherish what you have, and enjoy what you have, and sometimes think, well, just leave everything. I'm gonna enjoy the feeling of the sun on my face today or even the rain. Sometimes I think, like, I can feel it now and I can live this. And even that is special.
LINDSAY: For those who want to get more involved, like you, what advice would you give them about pursuing deeper knowledge about the disease or getting more involved in research?
JETSKE: To be honest, I find it hard to answer that because I'm also struggling with how large or small I want this disease to be in my life, and how to find the balance. I want to do something meaningful with this, but also, I want sometimes for it to just not be there. And I also want to just be ME. In a lot of situations, I'm Jetske with the Alzheimer's gene, or Jetske the Alzheimer's researcher, or she's the Alzheimer's writer or all those other Alzheimer's hats that I sometimes wear. And it's difficult.
The only thing I think I can say is, reach out to people around you, to researchers in your country or physicians or if you're into art, perhaps art. Try to find a way to channel this energy. I've found that you can transform sadness and difficulty into something more beautiful. For me, writing a book was about that, to try to transform something that was painful and hard and turn that into a book that has beauty in it, and make it in a different shape that I can better deal with.
I think it's important to find something that suits you, whether it's activism or art or just anything else. And also, to check regularly with yourself about whether the balance is still right and sometimes, to say, well, it's been enough–for today, or for this month, or for this year. And to shift that, because I also think that’s something that's changing. It's a delicate balance, if anyone knows how to find it, I'd love to hear.
LINDSAY: Jetske,thank you so much for agreeing to talk to us today. This will be such an important resource for those in our community to hear from somebody who's on the other side, and who's doing all of these incredible things, and who gets it.
I'm so grateful for all that you're doing in this community. I hope we can continue our work together on making this a better place for people that have these early onset dementias, because I think there's a lot that we can do moving forward.
JETSKE: I totally agree. Thank you for doing this, for building this platform, and connecting people with each other, and offering all those support sessions, and doing all those interviews.