Myrna: I remember trying to make bread and I was putting flour in and then I lost count, so I dumped it all out, started again. And as I'm trying to do this, I am swearing at myself and I'm calling myself all kinds of negative words because of the association that dementia is something other than a neurological disorder. The scarlet letter it brings to mind. A scarlet D perhaps instead of an A. Allison: That's Myrna Norman. She's faced stigma because she's living with dementia. But as you'll hear, despite that, she is flourishing and she's on a mission to bust that stigma. Jay: Welcome to Defy Dementia, the podcast for anyone who has a brain. Allison: 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. Genetics can play a role, but lifestyle risk factors, such as exposure to air pollution and lack of exercise, are also very important. Jay: 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%. Allison: And today on the show, stigma busting, we are exploring how stigma impacts people living with dementia and what we can do to stop it. Jay: I'm Jay Ingram. I'm a science journalist. 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 Center 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: The word stigma literally means a mark of disgrace or, more broadly, it refers to "negative attitudes, beliefs, or behaviors about a group of people because of their situation in life". Jay: Today on Defy Dementia, you'll meet people living with dementia who've experienced stigma up close and personal. They'll share some ideas on how all of us can tackle it head on for the benefit of people living with dementia and for society as a whole. Allison: And later on the show, you'll meet expert and advocate Jim Mann. According to the Alzheimer Society of Canada, Jim has been acknowledged as perhaps the single most influential person in Canada for reducing the stigma of dementia. Jay: But first, a personal story about thriving in the face of stigma. Allison: Myrna Norman is 75 years old. She lives in Maple Ridge, British Columbia and she is no stranger to many of our listeners. She was our guest on the second episode of Defy Dementia, which was all about how being social is super important for brain health. 15 years ago, she was diagnosed with frontotemporal dementia and now her diagnosis is mild cognitive impairment. That original diagnosis left her feeling deeply isolated and stigmatized, but she was able to dig herself out of it to break free of her cocoon. And since then, she's helped many others do the same through the dementia support group that she founded in her community. Myrna, thank you so much for helping us defy dementia. Myrna: Oh, Allison. It's hard to express my thanks for offering this opportunity to talk about dementia. Thank you again. Allison: So great to have you. Where do you think stigma comes from? Myrna: I think stigma comes mostly from two things, from fear and from ignorance. And I hate to use the word ignorant, but lack of education. We don't know enough about dementia, like we didn't used to know about cancer or other diseases. Jay: Yeah, I agree with that. There is some reeducation that's necessary, but Myrna, after you were diagnosed with frontotemporal dementia, what did your experience of stigma feel like? Myrna: Oh my God, it was devastating to me. My soul ached. I thought I had lost all value and that everybody saw me as somebody that didn't have any ability to live a good life and to be a person who could provide some positives for my community, my country. So I found myself for a period of time self-stigmatizing. So I would try to bake something. I remember trying to make bread and I was putting flour in and then I lost count so I dumped it all out, started again. And as I'm trying to do this, I am swearing at myself and I'm calling myself all kinds of negative words because of the association that dementia is something other than a neurological disorder. The scarlet letter it brings to mind. A scarlet D perhaps instead of an A. And it's totally stunting to our growth, how we want to be, how we want to be seen, and what we can do. Jay: Could you share with us, Myrna, a few stories about your experience of stigma when people said or did things that affected you? Myrna: Certainly. So, at some point, I think just after I had a very small stroke about five years in, I was going to the hospital for therapies and I was in this particular group for quite a long time. And the numbers of people in the group would change as to how their abilities increased and they were improved, I should say. So we would take turns counting out the exercise, hands over head, one, two, three, et cetera. And at one point, it was my turn to do that. And I guess when I was doing my numbers, I didn't do it correctly and I wasn't aware that I didn't do it correctly. And the gentleman was standing next to me said, "What's the matter with you? Have you got dementia or something?" I can still feel that feeling today, although it was about five years ago, it was absolutely crushing. And I left and I never returned to the hospital to do those exercises ever again, even though I was asked repeatedly. They phoned me, they cajoled me, but I just couldn't face that stigma again. And that really puts you back in terms of reaching out for the life I wanted to live. And then just a couple of years ago, my husband and I were invited to go to a cottage on a lake for three or four days to just spend family time. And whilst we were there, the lady of the home kept following me, but it's important to understand she was in my personal space, so I could literally feel her breathing on the back of my neck. It was awful, awful, awful. We were sleeping not inside the house. Whenever I had to go up to the house to use the washroom, she followed me. And at some point, I couldn't take it anymore. And I said, "Would you stop it? What are you following me for?" And she said, "Well, you've got dementia." And I was just absolutely crushed. By this time, I had dementia for 10 years. And I went down into the area that my husband and I were sleeping in and started to cry and pack up my belongings and my husband came running in and said, "What's going on?" And I told him. And then the man of the house came down and started yelling at me and I said, "What is it? What are you saying?" He said, "Well, you're crazy. We don't know what you're going to do. You've got dementia." So we continued to pack up. I'm even getting tears thinking about it. We packed up our stuff and we left the cabin. It was an eight-hour drive from our home. And it still is such a painful memory. Allison: Yeah. Myrna: And the point is, it doesn't have to be. I can still be the type of person I want to be. Of course, I'm going to have some problems. Of course, I'm going to need help. And there are benefits, I don't have to cook anymore. I don't thrive so I don't have to do the driving bit anymore. In every situation I think a person is involved in, there are some ways to overcome what you need. Jay: Myrna, your description of other people laying stigma on you sounds a bit to me like a phrase that people use a lot these days, gaslighting, where you're told untruths about yourself and you start to believe them. And that makes me wonder, do you have a sense of what the impact of stigma is on brain health of people who, like you, are living with dementia? Myrna: Oh, of course. The impact is so manyfold. It forces us to remain inside our little homes because we don't want to venture out and be hurt. It forces us to stop even looking for stimulation and doing things that we think might help us. We eventually get to quit even bothering because we're just going to not make it and it's going to be a horrible life and there's no point in even trying and, and, and. And that doesn't make for a happy life. Allison: Yeah. It was interesting, in the introduction I mentioned, you broke free of your cocoon, because in the last interview we had with you, that was one of the phrases you used that really stuck with me. What was it that changed your mind about stigma that enabled you to break free of your cocoon that enabled you to really flourish the way that you're flourishing today? Myrna: It was two things. The number one thing was my grandchildren. I had all daughters and then I had all these grandboys. And we used to spend a lot of time doing really boy things. And I just was loving spending time with them. And while I was in that period of cocooning, I was actually afraid. Because I didn't understand dementia, I was afraid that I could be harmful or I might say inappropriate things. And then I thought, "But look at all the time and the joy that you've spent with those kids and you don't want to give that up. They are your grandchildren. You are required in some way to enhance their lives." And so that was number one. And then number two, this lady named Dr. Gloria Praveen invited me to try art. I had never painted or written poetry or anything. I went. And guess what? I loved it. And I realized through doing those things, I'm a poet, I can write a book, I can paint a picture. And as long as those things make me happy, that's what's important. Allison: Amazing. Jay: Now, Myrna, there are many other people that are in roughly your situation that may not have grandboys to play with. What would you suggest to them to shed stigma? Myrna: If we don't experience our lives, if we spend our time in our rocking chair watching CNN, we're not going to allow our brains to develop more. We're not going to be able to learn new things. So my suggestion is three, good diet, exercise, but being social. I have people in our Purple Angel dementia support group who cannot speak. And you know what? We have the greatest understanding. I mean, it's just amazing. People just need to accept themselves and others as equals. Jay: And so we're reaching out to groups as you have would be one thing to do an important thing? Myrna: Yes, and try to keep up with some of the things you used to do. One thing that seniors often do for an activity is go to dinner with their friends or go and play cards with their friends. Don't stop doing those things that you enjoyed. We've actually, as a group of people living with dementia, have gone fishing. Imagine that. I really believe that more than anything else, it's remaining socially able. And one has to give of themselves to do that when we have a dementia diagnosis. And our care partners also need to encourage us to do that. Allison: Yeah. And so speaking of care partners, what advice would you have for care partners? What can they do to reduce stigmatizing people living with dementia? Myrna: Caregivers, I think, are trying so hard and it's such a tough job and there needs to be more support for care partners and they need to have time away, like respite care, all these things we need to do for care partners. But in terms of how care partners are relating with their loved ones, I know it sounds really silly, but compassion, and understanding, and maintaining the same way ... For instance, my husband talks to me in the same tone he did from 20 years ago. Just because I have dementia, he doesn't talk down to me. We still try to be an equal partnership. And equal partnerships have give and take. And that's probably my point is just to go easy. And there's also this other stigma when people are thinking they're doing a really good thing. And so they'll say, "Oh, no, dear, you go sit down. I'll do it," or "Let me take that from you." You shouldn't probably be having that. And in a grocery store, "I told you to come and stand by the cart." Things like that that people, I think, believe they're doing it for the best reasons, but it's important to put yourself into the feelings of the person that you're caring for and you wouldn't like that. Allison: So you mentioned before these forms of subtle stigma as you were just talking about. For many of us who have loved ones living with dementia, we often, as you mentioned, will finish their sentences or get up to help them with something. And where do we draw that line between helping someone and taking away their personhood? And is that line, do you think, the same for everyone? Myrna: Absolutely not. And I think once we all become educated about dementia and its many idiosyncrasies, we can just make our lives better. Allison: Yeah. Myrna: For instance, when I was first diagnosed, when my husband tried to help me complete my sentences, I would get so furious with him. So we communicated and I said to my husband, "When I need your help, I'm going to ask." And then you can help me from then on if that's what we need to do. But please now give me the opportunity to keep working my brain to see if I can come out with those words. Allison: Yeah. Myrna: It's difficult for both. Allison: Yeah. And in terms of society as a whole, what would you say society needs to do to reduce the stigma? Myrna: Yes, thanks, Allison. I think they need to educate themselves. There needs to be a whole cross section, I think, of education across all fields of humanity. I think one of the biggest steps is have people like me, and there's a whole ton of people like me, need to come out in the forefront. And the reason behind that is if I'm at a meeting and there might be 12 people living with dementia and 50 who are not, those 12 people will gravitate to me. It's like a sisterhood or a brotherhood. We find such joy in being with others like we are because, I'm looking for the word, there's no stigma attached between us. It's just a joy to be with each other. Allison: I think that that's great. The more that we can focus on people like you sharing their stories, I think that's really where we'll be able to make the biggest gains. Jay: I agree. But I would also say that we can't just depend on those people with dementia who are brave enough to come out and interact like Myrna does. But Myrna, it's 15 years since you were first diagnosed. You're a fantastic advocate public speaker and, as we know interviewee, but does stigma still weigh on you? Myrna: Yeah, but I don't allow it to hurt me. I think I feel as though I was hurt to the ultimate with family. And so I don't even allow it to go into my space anymore. That's my space. You think what you want. I don't know ... Humans have this great need to put everything into boxes. So I don't know if humanity can change that, but I think if people see enough people living well with dementia, they will make the attempt, especially if there's supports for people with dementia so they can see that you can still have a good time. Jay: Yep. Breaking down a lot of the myths, that would be a good start. Myrna, it's great to get to interview you for a second time. I mean, who knows? There may be another one, we don't know. But we really appreciate you coming on and sharing your wisdom with us. Thank you again for doing this. Myrna: Thank you very much for all you're doing to help so many people out there that are living in very sad lives. And I so appreciate what you guys are doing. And I have tears. So that'll be the end of the interview. Jay: Thank you. Myrna Norman is a dementia advocate and volunteer coordinator of the Purple Angels Ambassadors Dementia support group. She joined us from Maple Ridge, British Columbia. Our next guest is Jim Mann. He's been listening to Myrna and we should say that Jim knows Myrna quite well. They're both British Columbia-based dementia advocates. Before retiring, Jim worked in marketing and management consulting. At age 58, he was diagnosed with Alzheimer's. After that, Jim set out to fight stigma and promote public awareness of dementia. He became an advocate and has worked alongside scientists on dementia research studies. Among his many leadership positions, he's a member of the National Ministerial Advisory Board on Dementia and the advisory board at the Canadian Institutes of Health Research Institute of Aging. Recently, he also served as co-principal investigator on a stigma-busting resource called Flipping Stigma funded by CIHR. And there's one more thing you need to know about Jim. When he leaves his house, he wears a lanyard around his neck with a sign that says, "Please be patient, I have Alzheimer's disease." Jim Mann joins us from Surrey, British Columbia. Jim, welcome to Defy Dementia. Guest 2: Thank you very much. I'm pleased to be here. Jay: Jim, you know Myrna. But what struck you, particularly as you listened to her? Guest 2: How invasive stigma is to individuals and how everybody has their own story about stigma, Jay. The stories vary, but that name, stigma, is right there in big letters. Allison: Now, when you're going out in the public, you wear this sign that says, "Please be patient, I have Alzheimer's disease." Can you tell us what are you hoping to achieve in wearing that sign? Guest 2: I hope to achieve two things. The first one is to get me out of a difficult situation where I may be at a coffee counter and not remember why I'm there or what I'm supposed to be doing. And because I wear a lanyard, you know that people will read it. So I may be given a little bit more flexibility there, but I also wear it to try to show people that a person with dementia can pick out his own bananas or pick out his own apples and converse with someone else in the store. And that communicates a very strong message to people that I hope will lead to them telling others. I believe in that six degrees of separation. And I think that is also so very important to show some of the difficulties that one may get when they are living with dementia. Allison: Yeah, the reality of it really. Guest 2: That's right. Allison: Yeah. And you mentioned earlier that everyone's got their own stories, right? And are there stories that you experienced or stories you know about others that illustrate the stigma that you're trying to avoid in all the work that you're doing? Guest 2: Yes. And how long do we have on this podcast? Sure. I think that ... Well, I know of a fellow who was a long-time member of his golf club and he was just a font of information. Members would go to him all the time and ask about rules and he would always organize men's night and collect the money and set the program, et cetera. But the day after they learned of his dementia diagnosis, all that went away. No one ever went back to him about a rule or to seek any clarification of anything. And immediately, they took away what he did for men's night, don't worry about it, we'll do it. And that, to me, is such an illustration of the stereotype of dementia, which equals stigma, the stereotype of a person who was diagnosed and immediately no longer capable of doing anything. And personally, I was in emergency with my wife, very busy emergency room, and we were at one end and the nurse would come out and yell somebody's name and she always said, "Patient only." So she called my name and my wife and I stood up and halfway down to her, she called out again, "Patient only." And we got up to her and I said, "I have Alzheimer's. I need my wife to be with me." And the nurse looked me up and down and said, "Well, you look fine." And that was very stigmatizing. Allison: Yeah. Guest 2: Very offensive, too. And that, to me, is the stigma of dementia, which is really equals people looking at a person with dementia as one individual, as the stereotype of a person with dementia. That is someone who is frail, who is old, who automatically needs a wheelchair. And actually, I did see it with my mother's experience in independent living. She did have dementia as well. And on my way back home from downtown, I stopped off and thought I would catch her at the end of her lunch. So I went in and into the dining room and they always sat at the same table. And, in fact, there were four people at the table. One of them was not my mother. And I said, "Where is my mother?" And they pointed over to the corner table and said, "Oh, she's moved over to that table." And I guess they just got tired of the same stories or the same questions or something. So it was quite disturbing to see her just sitting in the corner. Allison: Yeah, it's heartbreaking actually, right when she needed that social interaction the most to be excluded. When we've been talking over the course of the show about different risk factors for dementia, like social isolation, like a lack of intellectual or physical activity like depression, how do you think stigma impacts these dementia risk factors? Guest 2: Well, when a person is diagnosed or even pre-diagnosis, stigma will impact them directly and significantly because they will have that stigma in mind. It's too scary that it is not something they want to tell people about. I shared a stage once with a couple who said that they had told friends and neighbors that he had had a series of small strokes rather than say that he had Alzheimer's, that he had dementia. And it struck me that there was that sense of embarrassment from having dementia. Allison: So are you thinking that stigma is actually keeping people from getting the diagnosis in the first place? Guest 2: I think it's fair to say that that will happen. And even if a person is given a diagnosis, some, like a person that came to our support group at one point, she initially got the diagnosis and went home and shut the door. She didn't even tell her daughter that she had been diagnosed. Only went out when she really had to. And so that's what stigma does. There's a word and it's gone from me, Allison, but it makes people withdraw and not encourage socialization. It just encourages loneliness. And that, to me, is the saddest part. Allison: Yeah. Jay: Jim, from everything you've said, even so far, it sounds to me like the responsibility for changing this does not fall on people that might have dementia, but on the rest of us. And the question is, how do we go about changing people's attitudes to reduce and hopefully eliminate this kind of stigma? Guest 2: I like to think being open to saying that you have a diagnosis of dementia. I think that people really benefit from hearing stories, from hearing from people who are living with dementia, because otherwise, it really is theoretical to people if they've never had any interaction with anyone living with dementia. And the real-life stories are what helped to diminish the myths and the stereotypes of dementia. But also, the project that was referenced in the introduction, the Flipping Stigma project that I was involved in, the members of what there was called an action group created a toolkit, the flippingstigma.com, that really did focus on stigma. And where the members of the action group, the people with dementia, are heard throughout the toolkit talking about their experiences or talking about how they dealt with an experience. And it's through those communication tools, through hearing from people that you are going to have an impact on stigma. But polling has suggested that Canadians are afraid of dementia, they're embarrassed by dementia. And so the more that we can talk about it, the more that we can do podcasts like this one, the better chance we have of reducing stigma in the wider community in Canada and hopefully around the world. Allison: When we were talking with Myrna, she mentioned subtle stigma. Do you know any good rules of thumb to help people who are well-meaning avoid engaging in that kind of stigma? Guest 2: I think number one would be talk to the individual. Don't ignore them. I mean, talk to them. Number one, thinking of what you had just said about Myrna, some people with dementia like getting hints, if you will, from others that, "Oh, is this what you're looking for? Is this the word?", et cetera. But some others don't because it'll put them right off. I don't like getting a hint because I have lost my whole train of thought that way. But the biggest thing is that assumption, that immediate assumption of incapability. You go from, "I can do it one day," to, "Oh, we'll do it." Allison: Yeah. It's interesting because I think that if you see somebody in a wheelchair, people have been taught, don't make an assumption about what they can or cannot do. You might ask them, if they seem to be stuck somewhere, "Would you like help?" But don't just assume that you should be pushing their wheelchair. Guest 2: That's right. Allison: But for some reason, that same logic hasn't made it into the Alzheimer's and dementia space. Guest 2: No. And in a lot of ways, I think, Allison, it's because having dementia is an invisible disability. Like that nurse said, I mean, looking at me, she said, "Well, you look fine." Allison: Yeah. Guest 2: Well, sure, I look fine. Jay: Yeah, you look pretty good now. Guest 2: Thank you. Jay: I've got a bit of an unusual question, but I'm going to throw it out to you anyway. One thing that is missing from most conversations about Alzheimer's is humor because it's a serious subject, and yet the most disarming things in a conversation are humor. Do you think there's any room for that as we go forward to try and reduce stigma? Guest 2: Oh, Jay, there's always room for humor. And humor can often, there's this word, make people more comfortable. And you laugh at yourself. You laugh at, "What happened?" I haven't done it yet, but put the house keys in the freezer or whatever. Well, you laugh at it because, I mean, throughout a day, you'd be beating yourself up an awful lot if you don't laugh and you disarm people by laughter, by making some of your life experiences funny. Certainly, I try. Allison: That's great advice, I think, for everybody. Now, since your diagnosis in 2007, you've driven research, you've spoken to and inspired thousands and thousands of people. And I'm wondering, to what extent do you think that we are making progress in busting this stigma of dementia? Guest 2: Without benefit of doing research and so on, I do like to think we are making progress, Allison. I do feel that in the last number of years, there is more and more mention of dementia in media. There is more people are talking about it because we do have to change the conversation. Allison: Jim, you've helped us today start changing that conversation and I just want to say thank you so much for joining us and for everything that you do. Guest 2: Thank you very much, Allison. I appreciate that. Jay: Yes. Thank you, Jim. Guest 2: Thank you, Jay. Allison: Jim Mann is a dementia advocate, researcher, author, and volunteer. The stigma-busting resource that Jim mentioned was Flipping Stigma and you can find it at flippingstigma.com, and we'll include that link in the show notes. Jim joined us from Surrey, British Columbia. Jay: Allison, those two people, Myrna and Jim, are so impressive and they make me realize in a way that maybe I never realized before, that dementia is a very, very broad term. And there are some people that struggle and then there are some people like them that triumph. And once you know that, I don't see why it isn't necessary incumbent on all of us to assume the best about somebody that's living with dementia and engage them. And no matter what results, it's an act that I think we should all participate in. And it's crucial realizing that that there are people like them, it's going to help reduce the stigma. Allison: Yeah, there's a saying, you've met one person with dementia, then you've met one person with dementia because everybody is different. And I thought when Jim was talking about how we can address some of these issues of really the subtle sorts of stigma, what he said was talk to the person, find out what it is that they want, what they need, and recognize really their humanity. Jay: To find out more about how you can reduce the risk of dementia or slow its progression, please visit us at defydementia.org. Allison: There, you can check out other episodes of the podcast as well as our videos, infographics, and other resources. Jay: Our podcast production team is Rosanne Aleong, Helen Chen, and Sylvain Dubroqua. Our chase producer is Ben Schaub. Production is by PodTechs. Music by Steve Dodd. Our cover art is by Amanda Forbus and Wendy Tilby. Allison: And a big thank you to the people who advised us on this episode, Dr. Deborah O'Connor at the University of British Columbia and Alzheimer's advocate, Lynn Jackson. Jay: We'd also like to thank the funders of this podcast, the Center for Aging and Brain Health Innovation and Baycrest. Allison: And we really appreciate your support, too. So hit that subscribe button for Defy Dementia on Spotify, Apple Podcasts, or wherever you get your pods. And please don't forget to leave a like, a comment, or maybe even a five-star review. Jay: Next time on Defy Dementia, we will have the latest brand-new list of risk factors for dementia. The hugely influential international commission of scientists that determines risk factors for dementia is about to come out with new additions to their list. We'll speak to the commission's lead scientist and explore what is a person to do when confronted with so many risk factors. 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.