Listen About Additional ResourcesFrench Version Donate Myrna: It's so important that the general public realize that we have a neuron problem in our brain, and we're still people. We still need to be active. We still need to partake in our community. Allison: That's Myrna Norman. She's a person who was diagnosed with dementia 15 years ago, and she wants you to know that today she is thriving, in large part because she's supporting others with dementia. You'll meet Myrna in a moment. Jay: Welcome to Defy Dementia, a podcast for anyone who has a brain. It's all about living in ways that keep your brain healthy and reduce your risk of dementia. Because dementia is not predestined only by genetics. That can play a role, but there are other risk factors like fitness and diet, and they can be controlled through lifestyle changes. Allison: On today's show, we're talking about the risk factor of loneliness. Can feeling alone and isolated increase our risk of dementia? Most importantly, if so, what can we do to reduce that risk? Jay: I'm Jay Ingram. I'm a science author and broadcaster. I have both a personal and professional interest in dementia. Allison: And I'm Allison Sekuler, President and Chief Scientist at the Baycrest Academy for Research and Education, and the Centre for Aging + Brain Health Innovation. Jay: Join us as we defy dementia. Allison: Because you're never too young or too old to take care of your brain. Jay: Loneliness. It's the feeling of being alone. It can happen no matter how many people you know. You can be in a room full of people and still feel lonely. We're also talking about social isolation. That might sound like the same thing as loneliness, but it's a distinct term. Social isolation is a lack of connections with other people. But of course, loneliness and social isolation are closely related. Allison: And around the world, in large part because of the pandemic, loneliness is being officially recognized as a serious public health risk. In 2021, the Japanese government actually appointed its first minister of loneliness, giving him a mandate to combat social isolation. Jay: Then in 2023, the US Surgeon General declared loneliness an epidemic, asserting that being socially disconnected is as deadly as smoking 15 cigarettes a day. His report also said that chronic loneliness and social isolation can increase the risk of developing dementia by about 50% in older adults, even after controlling for demographics and health status. Those are odds no one would want to bet on. Allison: But the good news is that although loneliness is a dementia risk factor, that risk can be reduced by taking action. And that's something our first guest believes deeply. Jay: Myrna Norman is 74 years old. She lives in Maple Ridge, British Columbia. Fifteen years ago, she was diagnosed with frontotemporal dementia, a different dementia than Alzheimer's, but one with many of the same effects. That diagnosis would be devastating for anyone, and it was for Myrna. It left her shocked, isolated, and lonely, but she was able to find a pathway out. Myrna, welcome to Defy Dementia. Myrna: I'm just honoured to be here, and I hope we do defy dementia. Allison: Thanks so much. Myrna, can you think back to that diagnosis 15 years ago, and can you remember what that felt like, when you were told that you had frontotemporal dementia? Myrna: Oh my God, just like it was yesterday. That's one of the things I wish I could forget. I had been experiencing some really odd and unexplainable things happening to me. When I was driving, I would see vehicles going backwards instead of forwards. My windshield used to be covered with beautiful turquoise coloured blobs. It's weird. Intellectually, I knew they weren't there, but I couldn't see out the windshield very well to drive. And I used my windshield wipers. I knew that wouldn't help. So I went to the doctor. We ran some tests. My doctor asked us to sit down and he said to me, "Myrna, you have frontotemporal dementia. You have five to eight years to live. Do you have any questions?" That was my diagnosis, and that is not unusual. I was devastated. I fell into a deep despair. I spent about two solid weeks crying, trying to make a deal with the devil. Five years sounds pretty quick to me when I'm thinking about it, but in that five years, I then had to make so many decisions. And we sold our house. We just made all these drastic decisions where we lost money because of all this. I fell into a deep despair, that took me a long time. I cocooned myself in that period of time. So, I didn't even answer the phone. I didn't go out. I didn't care for myself as I should have been doing. It was just a complete shutdown of any social interaction. I just felt so full of despair. Allison: And was that despair just because you were told you had a disease, or was there more to it that was leading to that despair? Myrna: Because my diagnosis was very much the same as everyone else gets. They tell you you have a disease. They don't explain it. They tell you you have five to eight years to live. They don't explain it. They tell you to go home and get your affairs in order. So what does that leave you with, in terms of any positivity? So, I took that despair and ran with it for a number of weeks. Actually in total, a year and a half, I would say. Jay: And Myrna, so you were cocooned as you say, and obviously your social life was dramatically reduced, but how did you emerge from the cocoon? Myrna: You know, obviously it took a long time. It took 18 months. I missed my grandchildren terribly, and of course my children. I wasn't clear on what was happening. Stigma plays a huge role. But for some reason, I remembered the people that had helped me out on my journey to that date, and I knew that I had to give back to society just a little bit of what they had given to me to help me grow into who I was. I initially contacted Alzheimer's Society, and somebody put me in touch with a support group for them, but that ended up... It didn't continue. And it was sitting at a table colouring with children's colouring books. And it wasn't what I needed and many of the other people needed. So I had heard about a group from England called “Purple Angels.” I found a venue that would give us a free room. And so, I ended up starting this group called “Purple Angels,” facilitated by somebody with dementia, and involving people with dementia, their caregivers, and the community. Because I believe it's a community involvement necessity to help us feel good about ourselves, to help us grow. We meet now six times a month. We spend about 15 or 20 minutes, maybe talk … doing some education. We do exercises. I think that we need to have coffee and really good cookies that the caregivers supply, and we just need to enjoy each other. And that's what I try and give. Jay: Really good cookies are always important. Myrna: Yes. Jay: Myrna, you're really active now, and you've organized a support group. And I know that you had a big event a couple of weeks ago, an event in the park. How did that go? Myrna: Oh my God, thank you for acknowledging and asking me about it. It was amazing. So we had about 24 people helping, and they were caregivers, and they were folks with dementia. And some of the folks with dementia are nonverbal. Everybody worked really hard to put this event on, and we did call it a celebration. It's so important that the general public realize that we have a neuron problem in our brain, and we're still people. We still need to be active. We still need to partake in our community. So bottom line is, it was wonderful. Allison: You talk about your description of what dementia is, and everyone's got an image of, “what is it like to live with dementia?” You've now had frontotemporal dementia for 15 years, which I should note is about 10 years longer than you were expected to be around. You seem pretty around right now. I'm wondering, when people find out that you are living with dementia, are they surprised? Myrna: Oh, for sure. I have the gift of gab, which many of us have. But people say to me, "Like, you seem so normal. What things can't you do?" And so I say, "Well, my husband's become a great cook, because I cannot cook anymore. I leave the stove on, I burn everything, and it's dangerous. To get into the tub, I have to fall in, because I don't have the same use of my legs and hips. My driver's license was taken away by my doctor about eight years ago. I don't do the banking. I can't do math. It's just impossible for me." So those are the things that have really affected my life. And I think I've been compensated by having this ability to explain my situation, and hopefully everybody can understand. And so, people in our group ask me often, "You don't really have dementia." And I tell them that I do, but I think that the most difficult part of having a dementia is social isolation. Loneliness, I think it's more harmful than not having hearing. It's more harmful than not eating well, because you literally just cocoon. The other thing is, I have these two men. One is non-verbal. One talks incessantly. I put the people together playing a game of X and O's, and these two gentlemen were across from each other, and neither one of them could really remember how to play the game. But I just left it, and I backed off. And they had a conversation for an hour. They literally conversed for an hour. How does that happen? Really, how does that happen? That happened because they had somebody care... The partners cared about each other, and therein came an expression of communication. Allison: And even just giving people the opportunity to be interacting, because you mentioned loneliness and people may not realize, but loneliness is a really significant risk factor for dementia. And we say it's the new heart disease. So the work that you're doing, just bringing people together, that seems so critical to combat that loneliness. Myrna: You know, it is, because there are no groups just for people living with dementia. There are lots of groups for caregivers. There are lots of groups for researchers, medical people, et cetera. But, there is very little to nothing for people like me. And without that support, the disease happens much more quickly. Jay: Myrna, I love that story you told about the two men playing X's and O's and having an hour-long conversation. But do you see lots of evidence like that? That people other than you, like the people that you are surrounding yourself with, are benefiting from that as well? Myrna: Oh, for sure. From a personal point of view, all the caregivers. We do things like, on July 25th, we're having Christmas in the park. So, not only is our group of 24 going to be there with a lit Christmas tree and presents and the whole deal, but everybody in the park will see this. And many of them will come over and say, "What are you guys doing?" We also will have a bocce game. So somebody else sitting in the park may come over and say, "Can I play?" It’s all about finding ways for people to communicate with each other. Because once we understand, the scariness goes away. With anything, right? Allison: If you think back to that diagnosis, you talked about cocooning. There's the stigma. That's really what you're talking about. When you have that diagnosis, there's stigma that's associated with a diagnosis of dementia. And so, it sounds as though you think that this kind of approach of not just bringing people together, but bringing them together with an audience, is a way of addressing that stigma. Is that your approach? Myrna: For sure. And I can't think of any other way to do it. Stigma is alive and well. And I'd love to say it's not growing, but it is. I've been stigmatized, and it hurts me to the soul. However, education and understanding are communicative ways for us to deal with issues. Like gay rights, like, I don't know, wearing glasses, like being an older white woman. All those kinds of things. If we talk about them, if we celebrate the differences by things like Christmas in the park, it makes all the difference in the world. Allison: Yeah. And if you were talking to somebody else who's just had a diagnosis, if you think back to 15 years ago what it was like for you, is there advice that you would give somebody who's trying to work their way through a diagnosis like that? Myrna: Yes. I would first of all tell them not to social isolate. That every day, it's important to get outdoors, and not on the concrete sidewalk, but in a little park. Every neighbourhood has a little park not far from them. We need to feel nature. Nature nurtures, and so let's use that. That's given to us free. And there are places that people with dementia can call, sometimes to no avail, but you have to keep trying. And I have a responsibility. This is my body, and this is my mind, and I need to be responsible with it, and not just waste it. Allison: I love that. Jay: That's a great attitude to have, Myrna. And how much of your ability to live a good life with dementia for as long as you have, do you think is due to the fact that your social life is as enriched as it is? Myrna: 100% actually… There's a period of time when I became very apathetic. And it was about three or four months ago. And it lasted three or four months, where I sort of came back into myself, and wasn't filled with joy, and I didn't want to participate. And it took a very long time for me to get out. It seemed like forever, but it was about three months. And everybody around me seemed to understand what was happening, and they kept me going. They would say, "We're going to do this. Come and do this. Come and do that." And I did those things, even though it took a long time to help. And then sometime later, I found out that that is just one of the parts of dementia, is falling into apathy. So being able then to understand why that happened to me helps me, in terms of, perhaps the next time when it happens, I'll know how to deal with it. Jay: Thank you very much for this, Myrna. You're really an outstanding example of what can be done in dealing with dementia. We really appreciate it. Myrna: Listen, I've been listening to you forever. And it's such an honour for me to be sitting at the same desk with you, so as to speak. Thank you, Mr. Ingram and Allison. Allison: Thank you so much. Jay: Thank you, Myrna. Myrna: Bye-bye. Allison: Myrna Norman is the Volunteer Coordinator of the Purple Angel Support Group in Maple Ridge, British Columbia. Our next guest has been listening to Myrna. Dr. Michelle Carlson is a professor of mental health at the Johns Hopkins University School of Public Health in Baltimore. She studies how lifestyle changes can help protect the brain, and lower the risk of dementia. She leads a research study called “Experience Core.” That's core, as in a group of people. In that research, older adults are placed in a volunteer program in local elementary schools, where they help children learn. Many of the older adults are socially isolated, or from disadvantaged neighbourhoods. Dr. Carlson is discovering that the benefits of social interaction are showing up in their brains. Jay: Welcome to Defy Dementia, Dr. Carlson. What struck you about Myrna's story? Michelle: Myrna was so impressive because she was able to identify how the stigma of dementia was affecting her own behavior. And she was able to understand how to counteract that through social engagement, and her sense of purpose in her community. And that sense of purpose is so important to us all as we grow from youth, to adulthood, to aging. And she did a beautiful job of addressing that, and working with others to help them engage. Allison: And Myrna talked about feeling like she was living in a cocoon. She was lonely. She was socially isolated. We're wondering what you can tell us about the impact of loneliness and social isolation on the brain, and how it impacts the risk of dementia. Michelle: I love the term cocooning, and it suggests that individuals are trying to protect themselves. But at the same time, it turns out that they might be taking away what they most need, when they need it most. Meaning that, when an individual is reaching the age of risk for dementia, such as the type that Myrna had, and has, that's when they most need intellectual and social and physical engagement. The irony is that, oftentimes we reach that age where they're retired, where their family members, children, et cetera, may have moved out of the neighbourhood, out of their town, that sort of thing. So the idea of cocooning, which is such a great word, is that it's really reducing exercise in parts of the brain that need to be exercised, especially as we get older, to help reduce our risk for dementia. And those parts of the brain include the frontal lobes, which are the front of our brain, above our nose. And a region called the hippocampus, that connects directly with the frontal lobes to help us remember and engage with others. Allison: And how do those link to loneliness and social isolation? Michelle: It's important, when we're engaging with others, we always have to remember what we're doing from moment to moment, and update and really understand what that person's needs are. And that requires memory that's really led by the hippocampus. And also the ability to empathize and understand the other person's needs. That takes a lot of brain power that's capitalized on by the front of the brain. And humans are uniquely wired for that purpose. Just like a muscle, you have to keep exercising those areas. Jay: Can you give us a sketch of your Experience Core study, and what revelations have come out of it? Michelle: Yes. The Experience Core is an ongoing program that brings together children in elementary schools in greatest need, for help with learning to read. And the importance of learning to read is that once you learn to read in grades K through 3, then you read to learn. And so your trajectory of education, academic success is really altered permanently. We have a number of older adults in communities across the country who are socially isolated, who would like to help, but they don't know how to do so. They don't have the means by which to know how to reach out. So what we did is we brought these two groups together, by engaging older adults in their communities, and asking them to help children in need, by giving them the skills to help with literacy, and to help with library support. And to help with behavior, just asking children how they're feeling and giving them an ear to listen to in a supportive environment, within the school systems. And in doing so, we created a win-win. We not only helped children who needed a little bit more help, and the teachers who appreciated that help, but we also understood that there are aging adults living in communities who needed purpose, and they needed the social engagement in a safe setting. And we gave them the tools to do that in teams. And then we evaluated that effect on both the children and on the older adults, to see if we were actually having an impact, a win-win, if you will. Initially, we thought that the benefits were going to be more focused on mobility. We thought that people who were living in urban communities were going to benefit more from the movement, getting out of bed, going to schools, driving and walking to schools, walking up and down stairs in elementary schools, getting in and out of little chairs, sitting in the classrooms. So initially we focused on that. Jay: And what did you find about the older adults? Michelle: What we learned is that, not only did we help improve their cognition, their memory, and their attention, but in subsequent work, we found that we also, in fact, did improve efficiency and the ability to think and plan. And we showed that they were showing improvements in the parts of the brain, the frontal lobes. The hippocampus was happier and plumper. So we were delighted. We did not expect to see such wonderful results. Jay: Now you say you didn't expect those results, and I think many people would be astonished to think that volunteering at an elementary school will actually affect the structure and function of your brain. Michelle: You're right. I think the same. But I was motivated by one of our volunteers, who told me that being a volunteer had removed the cobwebs from her brain. And she challenged me. I said, "You know what? We're going to try test that." And in doing so, she showed me that we could demonstrate, using brain imaging, that in fact it was kind of true. That when you exercise your brain, your brain is a lot like a muscle. You just can't let certain regions go. They need to be continually engaged. And I think that one of the challenges with social isolation, which leads to loneliness, is that we need to better appreciate that it's just like physical exercise. It needs to be maintained. Allison: It's so interesting that just these sorts of interactions with the kids change the structure of the brain. And do you think there's something special about that intergenerational kind of volunteering? Or would any kind of volunteering do the same? Or is there magic to working with the kids? Michelle: Yes, I do believe there is magic. I believe that the magic is that we don't fully appreciate the power of intergenerational engagement. And I saw it in real time. I saw the benefits. I saw how children light up, and they expect to see that volunteer every day in the school. And they come to school to see that volunteer. So actually, we had benefits in the children, because attendance was higher. And so, not only were they benefiting from the interaction with the volunteers, and the children were attending school more often, and so we did not expect it. And we also didn't expect that volunteers would be so excited to see the children, in a way that just doesn't capture the teacher/student relationship. Allison: And the other thing that's so beautiful about this intergenerational volunteering program you set up is that it normalizes aging for young people, right? So it's a way of potentially reducing stigma. Is that another way of thinking about it? Michelle: Absolutely. And that really gets back to Myrna. Myrna made such an important point that there is a stigma associated with dementia. But that stigma also applies to aging and what we call ageism. And I think that we have to better appreciate that with age comes wisdom, and that that wisdom is valuable. It's a natural resource that we need to capitalize upon much more than we do. And I think the children saw it immediately. Once they were exposed to these volunteers, they saw it. And once the volunteers were with the children, they said, "Oh, I have value. I'm kind of important to these children." Allison: Amazing. Jay: So Michelle, your Experience Core results I think are actually really dramatic. But of course there are many older adults that don't have access to that kind of program. They're more on their own than the adults in your program. Have you suggestions or recommendations for people who are listening to this, who would like to be involved in a similar sort of activity? Michelle: I think the most important thing is to understand that, like, Myrna was a social instigator. She helped others identify... We need more social instigators, and that can come from other adults in the community. It can come from us. But there are ways in which individuals who are socially isolated or need social stimulation may need someone to tell them how valuable they are. And that could come in small ways, such as having a pet, or being asked by local pet shelters to foster an animal, where it requires you, with purpose, to help another individual. And in this case, perhaps it could be a dog, where you could easily match the needs of the pet with the individual's need to be purposeful and engaged. And in that process, you start low and you say, "Just take care of this pet." And in the process of doing so, they walk the dog. Walking the dog means going outside. Going outside means being around other people. Maybe you get engaged with other foster care dog walkers. And I think that's really important that we start with small goals in the community. And we do so by letting people know they have value. And we help them, give them the tools and the education. Allison: And you mentioned community. And not everyone can be a Myrna. We all want to be like little mini-Myrnas if we can, I think. Society as a whole is going to play a really important role. What can we do, all of us together, society as a whole, to do better with this issue of loneliness and isolation? Michelle: Such an important question. And that will take a village. It does require thinking at the level of the infrastructures in our communities. And one way to think about that is, with Experience Core, we relied upon the school. It's a safe structure. It's in every community. It's accessible to neighbourhoods with low income, moderate income, and high income. So it's an equalizer. And similarly, we can think about how that school could be purposed for other reasons. So for example, you could set up pickleball tournaments in the gym after school. And you could repurpose. And I think, if we could just think more creatively about how to use our infrastructures to promote people of all ages, it may not be as hard as we think it is. And this idea that individuals of all ages do better when they interact amongst each other, rather than saying, “Kids are in kids' places. Parks are only for kids, and schools are only for kids,” and that “seniors’ centres are only for older adults.” It may be that we're doing a disservice by using seniors’ centres only for adults as well. Jay: Well, Michelle, we think that your work is extraordinary, impressive, important. I'm sure I could add several more adjectives. Thanks. Michelle: I'll take them. Jay: Thanks very much for joining us today. Michelle: Thank you so much. Thank you. Jay: Dr. Michelle Carlson is a professor of mental health at the Johns Hopkins University School of Public Health in Baltimore, Maryland. Allison, boy, those are two pretty amazing guests. I would say the thing that really struck me about Michelle Carlson's work is that, not only were the people in her Experience Core study doing better, but they actually were developing new brain tissue, at seniors' ages. That's pretty incredible. Allison: Yeah. And there's some evidence that suggests that having these happier, plumper hippocampus and different brain regions, you can grow those in some ways by the social interaction, but you might also be shrinking some of those brain regions if you have lack of social interaction, and are feeling lonely and isolated. So the brain is really an amazing thing. And how it responds to these social interactions, it makes sense that this would be a risk factor, wouldn't it? Jay: Yes. And the point you made that the interaction with children, the intergenerational aspect is important too, really impressed me. Allison: Yeah. And I think just in general, these sorts of social interactions, whether it’s working with kids, whether it's working with people living with dementia, there are a lot of additional kinds of elements that come along with it. So there's the joy and the discovery that you get in working with children. Or it could be the exercise that you have when you're playing bocce ball with a group of people living with dementia. So there's social interaction, but it always seems to be coming with these additional benefits, doesn't it? Jay: Yeah. All those disparate things are contributing in a good way. And both Myrna and Michelle believe that volunteering is one avenue out of loneliness or social isolation. But that, to me, can be a very deep hole that's hard to dig yourself out of, no matter what age you are. Allison: Yeah. And if you or someone you know is in that situation, it's really important, I think, to start with small steps first. Jay: Yeah. Small steps like relearning how to say “hello.” Now, even that can be daunting. But if you start with the familiar, and that could be people, family, friends, or places and situations that you know, try to reach out to them, maybe occasionally at first, but then a little more frequently and regularly. Allison: Yeah. And instead of sending an email or text to someone, try picking up the phone and speaking to them directly, and then maybe work your way up to seeing that person in person. Jay: Now, that is a radical suggestion. Although, instead of doing everything online, which can be incredibly frustrating, go to the store, go to the bank, and interact with the people there. Allison: You can progressively and gradually work your way up to being more open, meeting new people and going to new places. And then you can experience new situations. Jay: And then you can build on that. So when you're feeling more open, take part in some group activities. Maybe fostering animals as Michelle suggested, or volunteering in your community. Allison: Yeah. The key really is to take it gradually and progressively, isn't it? And it might not be easy, but the health benefits for your brain are well worth it. And we'll have additional resources on our show notes and our website, defydementia.org. Jay: And just before we go today, we have an update about the previous episode of Defy Dementia. That episode explored how sensory loss, such as hearing loss, is a major risk factor for dementia. And our message was, get your eyes and hearing checked. Get glasses or hearing aids if you need them, because sensory loss increases the workload on your brain, and that in turn increases your risk of dementia. Well, since we put out that episode, a major new study has come out from Johns Hopkins University, and it underlines that message. The study looked at the impact of hearing aid use on older adults. A subgroup of people in that study were given hearing aids, and used them for three years. Among that group, the rate of cognitive decline was cut by 48%. In other words, loss of brain function was cut almost in half. The take home message, now more than ever, it pays to lend an ear to the scientific evidence, and get a hearing aid. Allison: To learn more about the Defy Dementia podcast, videos, and infographics, please visit us at defydementia.org. Jay: Our podcast production team is Rosanne Aleong, Monique Cheng, Sylvain Dubroqua. And our chase producer is Ben Schaub. Production is by PodTechs, music by Steve Dodd, and cover art by Amanda Forbis and Wendy Tilby. Allison: We'd like to say a big thank you to the Public Health Agency of Canada, who funded this podcast. Note that the views expressed here do not necessarily represent the views of the Public Health Agency of Canada. Jay: We'd also appreciate your support for our podcast. So please click on that subscribe button on Spotify, Apple Podcasts, Google Podcasts, or wherever you get your pods. I'm Jay Ingram. Allison: And I'm Allison Sekuler. Join us for the next episode of Defy Dementia. We'll talk about how specific brain nurturing activities, what the experts call “cognitive engagement,” can help reduce the risk of dementia, or even slow it down if you already have a diagnosis.