Katie: My husband and I were married when we were 22 years old, and it was during my pregnancy with our son Noah that Mike started to have changes. He was getting in trouble at work. He was more distant from friends. He was having trouble with reading and writing. Jay: That's Katie Brandt. She was a caregiver to two loved ones living with dementia at the same time. She came out of that experience with hard-won wisdom on how to look after loved ones, and also how to look after yourself. In a few moments, she'll share that with us. Allison: Welcome to Defy Dementia, the podcast for anyone who has a brain. Jay: Defy Dementia is all about living in ways that keep your brain healthy and reduce your risk of dementia because dementia is not predestined by our genes. Yes, our genes can play a role, but lifestyle risk factors like hearing loss, lack of exercise, or air pollution can also factor in big time. Allison: And scientists are saying that if we make healthy changes to those lifestyle risk factors, we could reduce dementia cases worldwide by at least 40%. Jay: Today on the show something that should be a big deal for that aging population. Caregiver risk! There's good evidence that caregivers, those of us who look after family and friends living with dementia or other chronic diseases, face a hugely elevated risk of developing dementia themselves. Allison: So today, we've got expert insights on the how and why of caregiver risk and stage advice on how we can reduce that risk. Jay: I'm Jay Ingram. I'm a science writer and broadcaster. And I've been writing and speaking about dementia for more than a quarter-century. Allison: And I'm Allison Sekuler, president and chief scientist at the Baycrest Academy for Research and Education, and the Centre for Aging and Brain Health Innovation. Jay: Join us as we Defy Dementia because you're never too young or too old to take care of your brain. Allison: Former US First Lady Rosalynn Carter died at age 96 in 2023. And one of her many accomplishments over her long life was setting up an institute to study and promote caregiving. And she bequeathed a famously thoughtful quote about the importance of caregiving. Jay: Rosalynn Carter said, "There are only four kinds of people in the world. Those that have been caregivers, those that are caregivers. Those who will be caregivers, and those who will need caregivers." Allison: And just to drive home her point, according to the Canadian Center for Caregiving Excellence, one in four Canadians currently identifies as a caregiver, and one in two will be caregivers at some point in their lives. Jay: Today, we're diving deep on the dementia risk faced by caregivers. It's a topic that we truly think deserves everyone's attention. Allison: Absolutely. During the making of this podcast series, people have been telling us that we should do an episode on caregiver risk. And so, here we are. Jay: Later on, Defy Dementia, today our guest will be Katie Brandt. Not only does Katie have an amazing and inspiring personal story about love and caregiving. She is a world authority on how caregivers can survive and even thrive. Allison: But first, what exactly is caregiver risk and how does it impact our brains? Jay: Our first guest is an expert on just that. Dr. Ho Yu is a neurobiologist and associate professor in the Department of Pharmacology at the University of Toronto. He's interested in caregiving, but his main research is investigating why brain cells fail to clear out the accumulation of toxic proteins found in diseases like Alzheimer's. Dr. Yu also studies lifestyle risk factors for dementia. And he's especially keen to learn more about how risk factors impact people with Asian heritage. So, he is one of the researchers taking part in the Asian Cohort for Alzheimer's disease study. Ho Yu joins us from Toronto. Dr. Yu, welcome to Defy Dementia. Dr. Ho: Thank you, Jay for having me here. Jay: It's our pleasure. Now, as we heard earlier, many of us are or will be caregivers and many of us know or will know caregivers. To what extent do you think should we all be worried about dementia risk for caregivers? Dr. Ho: It's a very good question, and I think we have to consider the cross spectrum of caregivers caring for people with dementia. The most alarming statistic that we have is that spouses of people with dementia are at six times greater risk of developing dementia themselves than someone who is not caring for someone with dementia. Jay: That's an incredible number. Dr. Ho: It is, it is. And I think it's really important to recognize that on the spectrum of it, I'm going to compare it to a genetic risk of Alzheimer's disease, apolipoprotein E, and this is the major risk factor, genetic risk factor for developing a later onset of Alzheimer's disease. And that statistic of six times greater is up to two times more than what you will see in people with apoE4, that variant that can influence Alzheimer's disease. So, we're looking at a lived experience that can have quite an immense impact on the caregiver when it comes to developing Alzheimer's disease. Allison: So, the gene is increasing your risk by about a factor of three? Dr. Ho: Correct. Allison: And this lifestyle factor of just being a caregiver, that's increasing your risk by a factor of six, is that what you're saying? Dr. Ho: That's correct. Yes. Allison: Wow. Why do you think the brains of caregivers are at an elevated risk of developing dementia? It's not contagious, right? So, what's causing this? Dr. Ho: That's correct. And I should actually also reflect that caregivers are not just necessarily spouses. They are representative of multiple generations in families and in communities. And we have to kind of examine what's going on with the caregivers. What's going on in terms of their bodies, their experiences, as well as what's going on in their brains. So, a caregiver will experience more isolation. There's a lot more impact on an individual because they feel that they are the sole support system for someone who's living with dementia or Alzheimer's disease. And that social isolation can be quite impactful. There have been studies that show that you can lose about 10 to 20% of the brain region that's involved with thinking - the hippocampus - over time when you have social isolation. So that's going to cause a loss in terms of your capacity to retain memories. Social isolation also can cause a lot of events like depression, which is a major risk factor for Alzheimer's disease. And moreover, just the ability to have these social interactions is a calming effect. So, caregivers potentially have higher stress levels. And we know that stress itself well, we kind of think about stress as being kind of the body type of thing. We know that cortisol is one way to detect it. But this is really an impactful thing because what that might do what some of the stress factors might do is actually kind of diminish the number of brain cells called neurons that are involved in thinking. So, when you kind of build in this whole system, you're kind of creating an environment that's really not conducive for learning and memory in an individual. And for the functioning of the brain cells, especially those that are related to memory. Allison: Yeah. And some of the other risk factors that we've talked about, would include exercise and nutrition and sleep. Are caregivers being affected by those? And are their brains being affected in the same way as we've discussed in our other episodes? Dr. Ho: Absolutely. And reflecting upon that, that's becomes a much more global aspect of some of the stress factors that individuals might have that predispose them to developing Alzheimer's disease and is as much so in the caregivers. We can take sleep, for example, when you are living with someone with dementia there's a bit more unpredictability. And so, that need to constantly be alert by a caregiver also weighs down heavily on your ability to get to a good sleep. And this is actually some of the research that we're doing. Losing that sleep impairs your ability to concentrate, to retain memories. And really on a biological level, we see that there's more of this garbage buildup of these toxic proteins that are related to Alzheimer's disease. Allison: Right. And nutrition and exercise, how would those be affected? Dr. Ho: Exercise is one of these risk factors that kind of is important for heart and lung function. So, if you're not exercising, you're really not getting that oxygen to your brain cells. So, more sedentary, less mobile activity can increase your risks of obesity, diabetes. Exercise is really important. And again, it's difficult to kind of pinpoint all of them, but it's a confluence of many things going on in the individual. Jay: We know that you're interested in the molecular events involved in the brain and dementia. Would you think you'd see the same sort of buildup of toxic proteins in caregivers' brains that are at risk for dementia as you do in the patients themselves? Dr. Ho: If we take a look back at that six-fold increase in developing dementia in caregivers, I don't know if there's really been a really good study that can say. “hey, we're starting to grasp some of these biomarkers, some of these things that we can kind of detect in blood or in your brain”. I think this is something that's really important. What we should be challenged as a society to do is to say, can we look at these risk factors? Can we look at stress as a risk factor and say, should we be trying to do earlier detection, especially in a vulnerable population like caregivers? Jay: We're going to be discussing caregiving a little later in this episode, but a big part of your work is studying dementia risk in people of Asian heritage living in North America. Why is that? Why is that an interest of yours? Dr. Ho: So, myself being ethnically and ancestrally Chinese, it always fascinated me that a lot of the clinical research that goes on, a lot of the people who are involved in working in research are typically Caucasian, non-Hispanic whites in the US where I spent a lot of my formative research career. And so, this represents a lost opportunity. We know globally, Alzheimer's is pervasive across all countries. And in fact, actually about, I think, 2/3 of potentially all cases of dementia are in Asia. And this is not really reflected in a lot of the clinical research, and in a lot of the clinical trials, and in a lot of the prevention types of things. We know that different groups might also have different risk factors and different sociocultural influences that might make them more vulnerable. And finally, with the Asian Cohort for Alzheimer's Disease study or ACAD. It's really illuminating how the disparity, not just participation in research, but access to medical care and information is lacking. And so, something that I’ve been very passionate about is working with underrepresented populations, not just Asians, but also other groups that don't get access to healthcare or brain health information. And this has become one of the programs that I do, in the community, is how do we better the communication levels? How do we inform people so that while not everyone has dementia now, we can hopefully try to reduce the risks based on our current knowledge. [13:20] Allison: And of course, there are caregivers in every culture, but the approach to caregiving might differ in different cultures. So are there cultural factors that could impact the dementia risk of Asian caregivers in North America that might be different from say, Caucasian caregivers? Dr. Ho: Absolutely. And I think social, cultural influences are very important in how we address some of these types of issues. Stereotypical, and it still is fairly pervasive, is that older generations tend to be autonomous. They tend to be the, “I don't want to trouble you generation”. And often that means that they become that one person who is going to take care of another person who is also feeling that they're autonomous. And this actually means that sometimes the resources and the availability to access those resources isn't being taken advantage of. Another aspect of the scenarios is that the diversity in terms of education and ability to speak English in Canada can also impair or impact one's trajectory. So. Access to care often is in English. And access to information often is in English. And this is a gap that we're trying to fill. Some of the work that we do is to bridge that information to people who are healthy. We've encountered a lot of caregivers who are concerned about their spouse. But I've also wanted to tell them that they should also be taking care of themselves because their health is also impacted. And if they, as a caregiver, are impacted, that lessens their ability to support the loved one with dementia. Jay: Dr. Yu, our next guest, Katie Brandt, will have some tips on caregiver risk, but you did say “take care of yourself”. Is that the main piece of advice you'd like to send out to everyone? Dr. Ho: I think it is. And it's learning. Understanding some of these risk factors that can potentially impact one's trajectory or one's risks factors of Alzheimer's disease. Things like exercise, things like social isolation, depression. And understanding that those are potential risk factors for dementia for themselves. And seeking the resources they can to make sure that they don't become meshed in those risk factors themselves and becoming more vulnerable to developing dementia. [16:04] Allison: It's almost like when you're on an airplane and they say “if you have to use the mask, you put it on yourself first before you put it on someone else”. Like take care of yourself first, so you can take care of someone else. Is that a good summary? Dr. Ho: Absolutely. And I think often a care partner does not see themselves as being the vulnerable person when it comes to it. There is a more pressing need. So they often forget that their own needs need to be looked after. Stress, isolation, their own diets are really critical in helping them also live healthy. Allison: Dr. Yu, thank you so much. It was really interesting hearing about all of this and thank you for joining us. Dr. Ho: My pleasure. And thank you very much for inviting me. Allison: Dr. Ho Yu is a neurobiologist and associate professor of pharmacology at the University of Toronto, and he joined us from Toronto. Jay: Our next guest is Katie Brandt. We will let her tell you the story of how she became a caregiver. But what you need to know about Katie is that being a caregiver led her to a very public life where she is supporting other caregivers and people living with dementia. Katie shares what she's learned firsthand and serves as a clinician, support group leader, educator, advocate, and public speaker. She also has a full-time job as the director of caregiver support services and public relations for the Massachusetts General Hospital Frontotemporal Disorders Unit. And she's also a citizen scientist who has co-authored research papers with top-flight dementia researchers. Katie Brandt joins us from Portsmouth, Rhode Island. Katie, welcome to Defy Dementia. Katie: Thank you, Jay. I am so happy to be here. Jay: We want to hear, Katie, about your caregiver experience, but first, do you have any thoughts coming out of what Dr. Ho Yu was saying? Katie: It was sobering. And also, in line with what I've seen for caregivers who are really sacrificing and giving up themselves. It's clear that their own health does suffer. And it also reminds me of something that I say often when I'm making presentations to clinicians. That the day that they diagnose a person living with Alzheimer's disease or related dementia, they're actually handing out a dual diagnosis. They have two patients sitting in front of them. Because the day that they diagnose someone with a progressive neurological disorder, they're also diagnosing a caregiver. Allison: So, Katie, how did you actually become a caregiver? Katie: It started as a love story, I always like to say. My husband and I were married when we were 22 years old, and it was during my pregnancy with our son Noah that Mike started to have changes. He was getting in trouble at work. He was more distant from friends. He was having trouble with reading and writing. So. I started taking him to the doctor. I remember I was holding Noah in the baby car seat, and I said to the doctor, "My husband is acting so weird, could he have a brain tumor?" And she was the first of eight medical and mental health professionals to misdiagnose him. It wasn't until I brought Mike to see the chief of cognitive neurology at Beth Israel in Boston, Massachusetts, where he was accurately diagnosed with behavioral variant frontal temporal dementia at the age of 29. Allison: And is it because maybe he was so young that it kept getting missed? Katie: Oh, absolutely. Frontal temporal dementia, especially behavioral variant where you have a lot of psychiatric behavioral symptoms such as impulsivity, lack of empathy. Really, maybe even hyperorality, impulsive spending. It's hard to say that those behaviors right off the bat are a sign of dementia. Oftentimes, they're categorized as a midlife crisis or depression. Allison: And there's more to the story, isn't there? Katie: Yes. So. Shockingly, four days after my husband's diagnosis, my mother passed away unexpectedly. And my father had been seeing doctors for memory issues. And 17 days after my mother's passing, my father was diagnosed with Alzheimer's disease at the age of 59. And so, at the age of 29, I found myself in charge of two adult men with progressive dementias. And my son was 1-year-old at the time. Jay: Dr. Ho Yu talked about not just how caregiving can increase dementia risk, but just how it affects your brain health and health in general. So, Katie, how were you doing in the months and years after you became a caregiver for more than one person? Katie: Yeah. So, it's tough for me to admit, but I wasn't doing very well at first. Because I sacrificed myself to meet the needs for everyone else. Just trying to learn how to step into this new role. I sacrificed my sleep. I left my job, which really created a lot of financial stressors. But of course then I could be fully present to care for the people who needed me. And I didn't have time for myself to cook nutritious meals. I lost weight towards the end of my husband's life. I even developed chronic hives that were deemed to be a reaction to stress. I found that I became very isolated. Because it was so hard for me to coordinate care for the people that I was taking care of so that I could go out and have some fun. And I realized that if I was going to be healthy, if I was going to be able to be a caregiver for the marathon of caregiving, I had to change. Jay: Are you describing what was a single sort of “aha” moment when you realized you had to change? Katie: My husband had been living with his diagnosis for about a year. And then he went into a skilled nursing facility for the last two years of his life. And it was during that last year that just everything about my health was starting to show. And I did keep up with seeing a counselor on a weekly or bi-weekly basis. And she was the one who said to me: "I know how dedicated you are to being a wonderful parent, but if you don't start doing things for yourself, you're not going to be able to show up for your son." So, she really clued me in that I had to take time for myself as a caregiver. It wasn't a luxury. It was required so that I could keep being an advocate. And that really catalyzed me to sign up at the YMCA to start taking exercise classes with a girlfriend. They provided free childcare. I got my dad into an Adult Day Healthcare program, and I really started to feel better. Allison: So, if you could go back and talk to yourself at the very beginning when you were diagnosed as being a caregiver, as you said, what would you have advised yourself to do differently? Katie: I would have said that there is no expectation that one single adult could meet all the needs of a person living with dementia. That in fact, both the person living with the diagnosis, and I, would do much better if we were integrated and connected with community resources. I think in the early days, I felt like it was something I had to hide and take care of at home and just shoulder the burden. Like figure it out myself. It was our family's responsibility. But now, I really believe that it's a community responsibility. And I have seen my dad thrive. First at an Adult Day Healthcare program where they gave him real purpose and meaning to his days. When I then found a residential program, a memory care facility, it allowed dad to have peers. He even had a girlfriend. Yeah. And it allowed me to be the mom that I really wanted to be. Especially because after Mike passed away, Noah only had one parent. The wish to say at home is actually based in the fear of the unknown. Or maybe even in our old ideas about people being abandoned at nursing homes, right? They're not connected with their loved ones. Now, families can be fully integrated into their loved ones' lives in memory care, assisted living or in skilled nursing facilities. And in fact, it's such a gift for me because now I get to, when I go spend time with my dad, I'm his advocate and I'm his daughter. I don't have to be the one worrying about doing his laundry or managing his medications. Allison: And it's so nice to hear you talk about how not only do you have time for yourself, but your dad's actually happy there. So, he may have had an unknown about it, but now in the situation, I have a sense he wouldn't want it any other way. Katie: I think that if you asked dad, he probably wouldn't say that he wanted to live in a nursing home because he would think, "No. That's for old sick people." But I know for sure that he also wouldn't want me to give up my life in order to meet his needs. And the financial impact of me stepping away from my career is something that I will never fully recoup. It will have impacts to my ability to save for retirement and take care of myself in my own old age. Jay: Katie, I think the startling thing that people will hear on this podcast is the dramatic increased risk of dementia for caregivers. And I'm just wondering through your really extensive experience. Are there specific things that you would recommend for caregivers if they want to lower that risk of dementia? Katie: Absolutely. So, the number one thing that I recommend to caregivers is once they've received an accurate diagnosis for their loved one. So, if you have Alzheimer's disease or your love known has Alzheimer's disease, get connected with the local Alzheimer's association. If they have frontal temporal dementia, connect with The Association for Frontotemporal Degeneration. And join a support group. People say to me, "Well, I don't want to be in a support group 'cause I don't want to just talk about my feelings and cry in a circle." That's not what a support group is. A support group is about people recognizing what you're doing. People who you don't have to explain everything, and you'll be accepted and welcomed. And I think that that can be the first step to putting on this new identity of being a caregiver and then learning from seasoned caregivers. How do they still retain parts of their individual self and their old life? That's the first thing. And the second I would say, is to get connected with a mental health provider just for you. So that that person can coach you and be your advocate to make time for yourself. Allison: So, we mentioned earlier that a lot of us are going to end up being caregivers one way or another. And all of these sorts of tips that you're giving, do you recommend that those are things you wait until there's a diagnosis to start looking into those sorts of things? Or is there some way to get ready in advance to prepare yourself for what's going to be an ultimate rule for many of us in the end? Katie: Yeah. I think there's no way that I could have prepared myself for caring for my husband. I had never heard of FTD. I didn't know that people even get dementia in their 20s or 30s. But thinking now in my 40s, I have a lot of friends and family who their parents are starting to age. And I'll say things like, "Have you talked to your parents about the house that they're living in right now? What if they couldn't climb the stairs later?" or "Gee, your parents lives three hours away. What will happen if they need you to take them to medical appointments?" So sometimes just planting the seed can be a good opportunity for a discussion before you're in crisis. Allison: When people are listening to the podcast, they're often looking for one or two simple take home messages, things that they can do to protect themselves, decrease their risk of dementia. If you had one or two bits of advice summarizing some of the things you've talked about. What would those one or two things be for other caregivers to reduce their dementia risk? Katie: I would say if you're not caregiving yet, talk to the people in your life who you love and say, "What if something were to happen where I would need to be your caregiver? Can we talk about some of the ways that I might put help in place so that my health can be protected while I care for you?" And if you're already caregiving, reach out to your faith community, your local healthcare provider, friends and family, and build a team of people to help you care for your loved one so that you can protect your health while caregiving. It is not a failure to say that you need help, but in fact, an act of courage and love. Jay: You're a dynamic person, Katie. I think that's pretty obvious. And you've also had really extreme caregiver challenges. Did they play a role in changing you into the person you are today or were you always like this? Katie: Being a caregiver has definitely changed me. I say often that I feel incredibly lucky. I was so well-loved by my parents and my husband. And I feel that I have been able to share that love with my son, to be the parent that I know my parents and my husband would've wanted me to be. Love has been the gas in my tank for my own family, but also for the caregivers that I work with because I see the caregivers that are suffering so much are the ones who love their family members. And they think if they sacrifice themselves, it will make the disease easier for their loved one. But it doesn't. Really, pulling in more people to help you care for your loved one allows you to do the precious thing that only you can do, which is to hold your loved one's hand, to reminisce with them, to love them the way an adult child, a spouse, a friend can. And I don't know. I think that these pieces have been inside of me, and it really has been a privilege to be a part of this community and raise my voice for others. Allison: Thanks so much. I think it was wonderful for you to share the story with us, and we really appreciate it. And you said, love is the gas in your tank. It's clear you got a lot of that love. So, thank you so much for this conversation. Jay: Yes, thanks. Katie: Thank you both. Allison: Katie Brandt is a public speaker, counselor, educator, and advocate for people living with dementia and their caregivers. She joined us from Portsmouth, Rhode Island. So, Jay, a lot of really interesting and important information from our guests. What is your main take home from all of this? Jay: Well, I guess there's more than one, but if I had to start, I would say when Katie talked about the importance of preserving your own mental health in the face of the stress of being a caregiver. How important is that even though people feel they have to devote all their resources to the person they're caring for. And that part of that is to involve the community around you, not just to prepare for caregiving, but in the midst of it. It's helpful to have other resources to bring to your side so that you don't have to do it all by yourself. What did you think about all this? Allison: Yeah. Well, I thought just the idea that being a caregiver for someone can increase your risk of dementia by up to a factor up to six times. That's a pretty stunning number. And I think that one of the things that was really important to think about is that it's not contagious. Obviously, that's not why the risk is coming in. But when you are a caregiver, there are so many different things, ways in which it impacts your life. So, basically, all of the different kinds of risk factors that we have been talking about over the series, they're all impacted. And then that's going to basically add up. And because many of us will be caregivers at some point in our lives, I thought that the notion that we should start the conversations about what we can do for others and for ourselves as early as possible, even before diagnosis if possible. I thought that was a really important message as well. Jay: There are so many important messages from both our guests. To find out more about how you can reduce the risk of dementia or slow its progression, please visit us at defy dementia (dot) org. Allison: There you can check out other episodes of the podcast as well as our videos, infographics, and additional resources. Jay: Our podcast production team is Rosanne Aleong, Monique Cheng, Sylvain Dubroqua. Our chase producer is Ben Schaub. Production is by PodTech, music by Steve Dodd, and our cover art is by Amanda Forbis and Wendy Tilby. Allison: And there is a huge behind the scenes team here at Baycrest who've also had a major hand in making the show. Meaghan Adams, Sophie Boisvert-Hearn, Faith Boutcher, Kimberly Krezonoski, Natalie Leventhal, Larissa McKetton, Suzanne Pede, Shusmita Rashid, Adriana Shnall, and the Leap Community here at Baycrest, Jay: We're also sending out some special thanks to experts who have provided invaluable advice to us Dr. Nicole Anderson of the Baycrest Academy for Research and Education, and the University of Toronto St. George. Dr. Mary Chiu of the Ontario Shores Centre for Mental Health Sciences in Whitby, Ontario. Dr. Miia Kivipelto of the Karolinska Institute in Stockholm. And Dr. Kathy Pichora-Fuller of the University of Toronto Mississauga. Allison: And of course, a big thank you to the funder of the podcast series, the Public Health Agency of Canada. Please note that the views expressed here do not necessarily represent the views of the Public Health Agency of Canada. Jay: And your support is greatly appreciated. So please hit the subscribe button for Defy Dementia on Spotify, Apple Podcasts, Google Podcasts, or wherever you get your podcasts. I'm Jay Ingram. Allison: And I'm Allison Sekuler. Thank you for listening to Defy Dementia. And don't ever forget you're never too young or too old to take care of your brain.