Listen About Additional ResourcesFrench Version Donate Laurie: My brain was muddled and I was calling it mental fatigue. I would get home from work, my husband would look me in the eye and he'd say, "Yeah. Yep, you're toast. You've spent too much time trying to listen today and trying to understand." Jay: That's Laurie Harris. She's a British Columbian with a compelling life story about how partial deafness has impacted her life and her brain. You'll meet Laurie in a moment. Allison: Welcome to Defy Dementia, a podcast for anyone who has a brain. It's all about living in a way that keeps your brain healthy and reduces your risk of dementia. Jay: On today's show, we're talking about sensory loss and its relationship to dementia. Can diminished vision or hearing increase the risk of dementia? More important, if so, what can you do to reduce that risk? Allison: 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: I'm Jay Ingram. I'm a science author and broadcaster. I have both a personal and professional interest in dementia. Allison: Defy Dementia brings you news you can use to lower your chances of dementia or possibly slow its progress if you have a diagnosis. Jay: That's because dementia is not predestined by genetics. Yeah, genetics can play a role, but it's generally much less significant than most people think. There are many other risk factors such as fitness, diet, sleep, social life, and there are actions you can take that can reduce those risks. Allison: That's because you're never too young or too old to take care of your brain. What is dementia? Dementia is a loss of cognitive functioning, like thinking, remembering, and reasoning, when that loss interferes with a person's daily life and activities. The severity ranges from the mildest stage, where it's just beginning to affect a person's functioning to the most severe stage where the person must depend completely on others for basic activities like feeding themselves. Jay: Dementia's actually a general term, not a specific disorder. Alzheimer's is one kind of dementia, by far the most common, but there are others like frontotemporal dementia, Lewy body dementia, and vascular dementia. In each of those cases, there's a gradual breakdown of nerve cells, neurons, and the connections among them. Over time, the brain gradually loses the abilities that Allison just mentioned, thinking, remembering, and reasoning. Allison: Now it's projected that worldwide, by the year 2050, there will be at least 150 million people with dementia, including a million in Canada alone. But as we mentioned before, dementia is not just in our genes. In fact, the genetic variants that cause dementia have been identified in a relatively small number of people. Just because your grandma or grandpa had dementia doesn't mean you'll get it. Jay: That's right. There are many other risk factors. Some of them raise the risk as much or more than genes do, and some risk factors can be controlled but others can't, like you can't control your age as much as you'd like to. That's the greatest risk for dementia. Allison: That's right. But according to the report commissioned by the medical journal called The Lancet, there are at least a dozen modifiable risk factors that account for at least 40% of dementia cases. That means that, theoretically, some of our risk for dementia can be reduced by lifestyle changes. Jay: Defy Dementia is all about identifying those risk factors for dementia and understanding how you can take action to lower those risks. Each episode will focus on a different risk factor like diet or fitness, and some of those risk factors might surprise you. Expect the unexpected. We'll be talking to experts studying each risk factor for dementia to share the science with you in a way that's easy to digest. Allison: You'll also meet a wide range of older adults with empowering stories of how they've navigated living with those risk factors, reduced their risk, or even lived with a dementia diagnosis, all while living life to its fullest. Jay: Stay tuned as we bring you the science, share stories and practical tips on how to live a healthier life, and together, defy dementia. Now, let's get to the show. Allison: Laurie Harris learned that she was hard of hearing when she was a child. She was diagnosed at age six and began to wear hearing aids at age 24. She's 58 now and lives in British Columbia where her job is finding nonmedical help for seniors so they can live at home longer. Jay: Laurie hasn't been diagnosed with dementia, nor does she know her risk, but she is bent on beating those odds. Welcome to Defy Dementia, Laurie. Laurie: Thank you so much. It's a pleasure to be here. Jay: It's a pleasure to have you too. When you were younger, Laurie, how did you adapt to hearing loss? Laurie: I think my family had to adapt more than I did. As I was younger, I didn't really have a lot of awareness of my hearing loss because I was still hearing and functioning in the world. Looking back on that now and in conversations with family, I'm hearing the stories, but it really was more about them learning how to adapt work with me than it was about my fitting into the world. Jay: Did they persuade you to start using hearing aids? Laurie: No, they did not. They had nothing to do with it. The funny thing is I was just in university at the time, living with two girlfriends, we had been walking to the grocery store together. One of them asked a question, I answered grapefruit and peanut butter. The two of them looked at me like I was a Martian. I said, "Oh, I'm guessing I just answered the wrong question." They said, "Yes." To this day, I have no idea what they actually asked, but it was at that point when I realized that I was really becoming somewhat dysfunctional in life, that I made that choice myself. After taking a fair lot of harassing from those girlfriends about, "We wear glasses, Laurie, because our eyes are bad. Therefore, you should wear hearing aids because your hearing is poor." Allison: Once you got the hearing aids, how did they help you? Laurie: Oh, dear Lord. Just tremendously, it's changed my life and now I can't function without them. I literally don't hear anything without them, but it has just allowed me to participate in life. Obviously, it's allowed me to maintain relationships and have a career. I'd be sunk without them. Allison: Is it just about the loudness, it makes it louder, or is there something else that it helps with? Laurie: No, actually the loudness can be a flaw at times. Your brain has to learn how to overcome that. The loudness, it's about directionality as much as it is about volume, all of the pieces. Just helping me to put together all the sounds and the context and figure it out. Allison: Was there a learning process then? It sounds like you had to learn how to, not just hear that there were sounds coming in, but how they fit together. Laurie: Yeah, that's a learning process that goes along with hearing loss in general. We all hear through body language. We all read lips to a certain extent. We all understand conversation based on context. When the hearing piece of it starts to disappear, you rely more on those other modalities. You rely more on lip-reading, on body language, on the context of the conversation. If someone changes the topic immediately, your brain's scrambling to try and figure out where you've gone. It has been a learning process. Jay: When did you actually make the connection between hearing loss and how your brain was functioning? Laurie: Mid-thirties when I found this really cool audiologist who really helped me to understand what exactly was going on. He was the one who really explained to me about all the modalities of conversation and how we adapt when one of them is gone. I was probably 30 when I really became aware of it. When I hit 50 and things started going downhill a little bit, that's when I really started to notice it affecting day-to-day life in a big way. Jay: Can you give me an example of how it was affecting your daily life at that point? Laurie: It's interesting that I had had a concussion about 12 years ago. When I hit 50 eight years ago, all of a sudden, I felt like that again. I knew that I didn't have concussion again, but my brain was muddled and I was calling it mental fatigue. I would get home from work, my husband would look me in the eye and he'd say, "Yeah. Yep, you're toast. You've spent too much time trying to listen today and trying to understand." It's about trying to piece together all of the noise and the context and figure out what's actually being said. All of which takes so much energy from our brain that, at the end of the day, there just isn't always much left for the rest of the day. That leads it to all sorts of problems. Allison: I mean, this mental effort that you're talking about, how did you become aware that the hearing loss and that mental effort were risk factors for dementia? Laurie: I read that somewhere that linked the two. I just thought, "Oh, dear Lord. I can understand entirely how and why that happens and I'm at risk." Allison: When you think about other people who... For you, the hearing loss, you knew you had it from a young age, but for others, it may be coming on gradually. I think a lot of people know vision loss. Everyone, we start wearing glasses, we're around 40, but not everyone knows the hearing also is changing gradually over time. For you, is there any difference you think because you already had been living with the hearing loss that it made you more aware of this mental fatigue or this cognitive load that other people might not be aware of? Laurie: Very definitely. I think I had become very familiar with the idea of mental fatigue. I didn't learn that it was, in fact, called cognitive load until it may have been an easier process for me because I've been living with the hearing loss all my life, and I've learned to thrive really with hearing loss until a little bit more recently. But others, both of my parents and my husband, have just recently started wearing hearing aids, so in their 70s and 80s. I don't think, barring their experience with me, I don't know that they would have clicked into the whole cognitive load piece of it. Jay: Audiologists claim that it takes about seven years from the time you first become aware that you might have hearing loss till the time you actually get your hearing checked. Laurie, what advice would you have for people who are in that seven-year period where they might be aware that they have some hearing loss, but as yet, they haven't done anything about it? Laurie: Just do it. I underline that with the knowledge that the cost behind hearing aids is prohibitive. In a lot of cases, it can be incredibly expensive. But get into the audiologist, get a test, get a baseline on file, if nothing else, so that when you feel like maybe next year you've lost a little bit more, you can go back in and get tested in and you'll have some really good data on whether or not you have actually lost more hearing, or if there might be something else going on. Allison: It's amazing. You sound like such a glass half full kind of person. I'm wondering, are there still any difficulties that you're dealing with with partial deafness and the cognitive load? Laurie: I'm going to have to ask you to repeat that because I didn't get it. Welcome to my life. Allison: You seem like a glass half full person. We're wondering if there still might be any difficulties in dealing with partial deafness and cognitive load? Laurie: Oh, absolutely. I always take great pride in the fact that I wear rose colored glasses. I choose to look at life very positively that way because otherwise I would just be in tears. It's just difficult, but you just have to keep at it. Jay: Yeah, it is difficult. But Laurie, you're a great example of how to deal with it when it happens to you. Thanks very much for joining us. Laurie: Well, thank you so much for having me. It's been fun. Allison: Laurie Harris is a 58-year old who's living with hearing loss. Our next guest has been listening to Laurie's story. Jay: Dr. Walter Wittich is an Associate Professor at the School of Optometry at the University of Montreal. Walter studies the rehabilitation of older adults who have combined vision and hearing loss, and he has a personal stake in this story. He and his husband are caregivers for Walter's mother-in-law. She has vascular dementia and Alzheimer's. Allison: Walter, great to have you here. Walter: Thank you so much for having me here. This is a wonderful time to spend with you today. Allison: When you were listening to Laurie speak, what struck you about her experience? Walter: I think the key word to hold onto is the word effort. I think that we use the word effort in every day. It has different meanings, but it basically means something's hard and you need to think about it, or you work harder to get to what it is you want. In the context of sensory impairment, whether that is hearing impairment or also visual impairment, the rules are, more or less, the same. You have to work harder to get access to what you are interested in. Effort will interfere. Effort is our barrier, and that is what we need to overcome. Jay: Walter, we should point out again that Laurie has not been diagnosed with dementia, doesn't even know her risk for it. But the picture she painted, as you know, was becoming mentally exhausted by decoding the world around her while being hard of hearing. To what extent is she describing a known risk factor for dementia? Walter: Hearing impairment has been identified as the largest, potentially modifiable risk factor for dementia, especially if this hearing impairment is present in mid or late life, that it will influence and put us at risk for the development of dementia later on. Now, what I cannot say is that this is causal. We don't yet have sufficient evidence to say that this hearing loss causes dementia later on, but they are related. There are some links here that we're currently studying. The good news is that I sometimes see this a little bit in the context of if you would do exercise, you want to get ready for... You want to build up muscle now, so if you lose a bit later, you're already ahead of the game. The more you can get yourself ready, and this is in this case for example, I'm very excited that she's so actively engaging in life, in use of assistive technologies. These are all proactive steps to get herself ready for life in the presence of a sensory loss. With that in mind, she might very well be completely fine and age completely normally. It's just a bit more effort. Allison: More effort. You talked about hearing causing more effort when you've got hearing loss. What can you tell us about vision loss? Is there a similar kind an issue that people face there? Walter: In hearing, it's obvious that you would have to put in more effort into listening. In vision, the effort often goes into reading. You now have to suddenly invest more time, energy, or techniques into magnifying something. It may become sometimes difficult. It's like if things look similarly, and so suddenly the effort goes into decoding a visual signal, but the problem in accessing the content is the same as it would be in hearing. Allison: Are they interacting, the vision and the hearing? Walter: I would think so, yes, especially when they can help each other. Audiovisual speech perception, for example, is something that I used to have to explain and now I don't, because all I have to do is say, "Remember when you were all wearing masks?" The moment we removed this visual information of being able to see somebody's lips, or their smile, or just some wink of the eye that gave us an idea that this was ironic, all of that suddenly disappeared behind masks and we didn't have access to the visual item of understanding speech. Now that this is more intuitive for people, it also became more intuitive. Why? As we get older, vision and hearing play an important role together to give us access to the world around us. They support each other. The moment one of them gets weaker, usually the other one just works a little harder, and so you're fine. But the moment they are both somehow affected, you're approaching what I call a perceptual cliff. At some point, it's just not going to work anymore. That is really when people start living with dual sensory loss and need to compensate in completely new ways. Jay: Walter, you mentioned that hearing loss is rated as one of the most important risks for dementia. Is the evidence, whether it's correlation and causation, is the evidence not as strong for vision? Walter: The evidence is there, but there is actually simply less research for us to make the same strength of an argument. There is a team at John Hopkins that has actually replicated this original model that was done to include visual measures as well. It turns out, if you actually have large enough data sets and you include vision and the analysis, it does emerge as an additional risk factor, however, not as large as hearing. Hearing still carries more. What I am really curious, in times to come, is whether there is an interaction between vision and hearing. We do not yet have a lot of data that can actually tell us that when they arrive together, they multiply. But there is some intuition in here that we say that this is indeed the case. Allison: If there is some link between sensory loss, whether it's hearing or vision, and a risk for dementia, not necessarily causation, but some sort of correlation, is there anything that people can do to improve their senses that might minimize that risk? Walter: Our battle against our modifiable risk factors is a complicated one. Life is complex. It turns out things all interact with each other. Nothing exists alone. If you look at the different theories that we have, is that it could very well be that the vision, and the hearing, and the cognitive decline are all caused by the same thing. It may just be aging. There may be some biological factor underneath. The best advice here is to stay as young as possible for as long as possible. It could very well be that there is a causal relationship, that is currently being studied, and whether this type of sensory deprivation actually is what keeps your brain from being stimulated inactive. One theory that I very much subscribe through is the social modifiers. It turns out that you can develop a sensory loss, and it is that sensory loss that makes you socially less active. We do know that being socially less active is a precursor of cognitive changes as well. Suddenly, it looks like it is your social isolation that is so dangerous, but that was actually originally caused by a sensory loss. When we speak in the context of rehabilitation, which is of course my world, especially in aging, we have the great advantage that people don't just go blind and deaf. You are losing a little bit of vision, you're losing a little bit of hearing, and within rehabilitation, there's much we can do in order to strengthen your ability to use what is still there to the best of your ability. Jay: I have a speculative perhaps off the wall question. If you take somebody like Helen Keller who was both blind and deaf, would she have been at a greater risk for dementia having lost or never having had those senses? Walter: This is an excellent point. I have a blind colleague who actually asked exactly that question at a vision conference a while ago, because people were going on and on about how dangerous it is that if you develop a vision impairment, you won't be able to do this, that, and the other thing. She stood up at the microphone and said, "Well, I'm blind and I'm able to do it." Something here isn't working. I'm returning to our initial idea of effort. I think that if you have lived your life with sight and hearing, you need to invest effort into the change that is occurring into your life. If you look at somebody who has congenital impairments, they simply develop a different way of doing things. They may also not necessarily have the same perception of effort because it's always been like this. They're operating within that framework of possibility. If they would now develop a third impairment that would make it more effortful for them, for example, developing some neuropathy, if you are used to using braille, that is then more comparable. Allison: People who develop hearing loss or develop vision loss over time as opposed to the Helen Keller's of the world, what can those people do to reduce their risk for dementia that's related to sensory loss? Is getting a hearing aid or getting your glasses repaired or fixed or upgraded, is something like that going to be helpful for people? Walter: There are, again, multiple answers to this that are all very exciting. I think that one thing we all have to do, as a population of people, is that here we are, wearing glasses, and it is completely normal to us. It is, however, yet not socially equally accepted to wear hearing aids. Not that I'm saying hearing aids are the solution to everything, but there is stigma involved in some of this. I think it's a social dimension that we need to address as a group, as a species. Instead of judging each other, we should really be looking out for each other. I think the introduction of certain assistive technologies, devices, tools, and techniques can help us remain functional even if the presence of a sensory impairment is changing your life, but there is technology that can help you. The second approach to this is that there are environmental and behavioral changes we can engage in. Some of them are very simple. If you communicate with somebody who has some sort of a hearing loss, giving them the topic of orientation of your conversation at the beginning, it will orient them into a certain type of vocabulary. Suddenly, they know, "Oh, we're talking about that TV show. What was the name of the guy?" Now you're already looking for words and listening to things in that context. Allison: Or even things like putting on subtitles while you're watching TV. Walter: Even on a Zoom call, it is now freely included. When you're doing all of this remote work, the stigma pieces, maybe people may not ask for it. It's interesting that you also continuously have to come out a little bit, that you need this and you need that. In rehabilitation, we often talk about the fact that you need to depend on others in order to become more independent, and that is one of those. I depend on technology in order to regain a certain aspect of my own functional independence. For that, you need to speak up. Allison: Regardless of the stigma, if someone has hearing aids or glasses, visual aids, will that help them because it reduces the cognitive load, for example? Walter: Yeah. I think that, in the end, the goal of all of these interventions, adaptations, and even if they're just environmental changes, like reducing the noise in the room, it'll make things easier. The moment you have reduced effort, again, people are more willing to engage. They will get more out of it, and they will be cognitive, more stimulated by the experience. Jay: I have an experience with closed captioning because I wear hearing aids. Sometimes when you have captions on, you can convince yourself, "I can hear perfectly well what they're saying. Perfectly." Just with my hand, I cover the closed captions, and suddenly, it's murk. I can't even make it out. They're important. Walter: Yeah. Actually, it reminds me of an experience that I've had with my mother-in-law. Because she's francophone, we watch television at home in French. It is easier for her to be engaged with the material. But then I will turn on the French captions, because for me, it is easier to catch the words that I might be missing. When she moved in with us, I turned on those captions maybe after four or five days because I wasn't always there. It turned out that I realized once I turned on the captions, I could see a behavioral change in her, that she was now engaged differently with the material on the television. Because she wasn't just listening to the TV, she was not just watching it, she was reading the TV. Suddenly, these captions helped her overcome some of her age-related hearing loss, which at 92, of course, would be expected, and still helps her today engage with what's happening on the television. Jay: Thinking back to Laurie, Walter, what should we take from her? What lessons can we learn from her? Walter: Much like Allison was mentioning before, she is a glass half full person, and that is the best way to go through life. I think that no matter what challenges have appeared or are to come for her or for any of us, there is something you can do. There is a solution just around the corner. You have to be resilient, at times, to find it. This may not always be obvious, but we've been around long enough to know a lot of things about sensory and cognitive changes. We just need to push forward and find the thing you need that lets you live the best life you can live. Allison: That's terrific. You mentioned your mother-in-law as well. I'm wondering, you've got so much knowledge about aging, about hearing, vision, dementia, when you and your husband are looking after your mother-in-law who has vascular dementia and Alzheimer's, how does that expert knowledge come into care or does it at all? Walter: This is a beautiful question. It's a very difficult one to answer because there are two voices in my head. The thing is that our lives are full with things. Being a care provider is another level, where you are invested oftentimes above and beyond the energy that you have to then to just be curious. I try to find these places where I can bond with my mother-in-law and benefit, for example, from communication strategies. I know how to do that. I know how to get her attention. I know how to engage so she can hear and see me. But I have to balance this with the realities of being at home, living a life, and getting things done. The things that I have said that people often resonate with is that if as you live life with a sensory and a cognitive impairment, the best way to protect yourself is to be physically engaged, socially engaged, and mentally engaged. These three things all depend on your sensory abilities. If you don't see and hear well, these three become harder. Well, these three things are the things that protect you the most. If I have any suggestion for people out there, is to simply treat their senses well and care for them in order to remain physically, mentally, and socially engaged in life. Jay: Walter, aside from everything we've talked about, the fact that you are there with your mother-in-law and she has dementia, we all know that's a very difficult thing. Do you have a way of viewing it or looking at it? Walter: For me, the experience of watching somebody live with progressive cognitive decline, the image that I often use is the way you would see an advertisement or a poster in a shop window that is in the sun. Over time, over months, over years, it fades away. You can still see, there's some blue and some beige. You can tell what the image maybe was with a mountain or a tree or a house, but it's not the same crisp and vibrant colorful image that it used to be. This is what's happening, watching my mother-in-law fade into the background. I think that the word that is best describing this experience is to watch somebody fade away. Like I said, we come back to this idea of resilience. You have to see the other half of this glass that is full, the time that you are spending with this person, what there is in it for me to learn, for my husband to learn, and for experiencing the end of somebody's life, which is just as rich as the rest of it. Allison: It's so beautiful to hear, your thoughts, and it is clear you are such a loving caregiver with your husband for your mother-in-law. I think part of it comes from the reflection that even if you're not seeing that vibrant picture anymore, you know it's there. You know that she still is the same person, even if she can't express it that same way. It's really beautiful to hear you talking about the care that you have for her. Walter: Absolute pleasure doing this interview with you. This is really a wonderful experience. Thank you so much. Jay: Dr. Walter Wittich is an Associate Professor at the School of Optometry at the University of Montreal. Allison, the impression I get from both Laurie and Walter is that it's your whole environment. We're talking about census, specifically hearing and vision, but it's really your environment that you're living in and how to maximize your understanding of what's going on that seems to be important. Allison: Yeah, and that when you do have hearing loss or vision loss, the world around you just becomes much more difficult to interpret. It's that extra effort. It's not necessarily the vision loss or hearing loss itself that's the problem, but it's the effort that you have to expend to be able to understand the world around you. That's so critical. I thought it was also really important to note that both of our guests highlighted the fact that you should be aware of what your sensory abilities are. If you see some decline or you're worried about it, take action. Get a hearing aid, get your prescription fixed, wear glasses, because that will help with that cognitive effort. Jay: If you'd like to check your hearing, we have a free online hearing test. You can do it at home. It's on the Baycrest website. We're going to post a link to it in our show notes. Allison: I've actually used it and I've had my whole family use it. It's easy and it's fun. It's not a substitute for an appointment with an audiologist, but it can alert you to hearing loss that you didn't know about. Jay: To learn more about the Defy Dementia podcast, videos, and infographics, please visit us at defydementia.org. Allison: Our podcast production team is Rosanne Aleong, Monique Cheng, Sylvain Dubroqua. Our chase producer is Ben Schaub, production is by PodText, music by Steve Dodd, and cover art by Amanda Forbis and Wendy Tilby. Jay: A special thanks to the Public Health Agency of Canada who funded this podcast. The views expressed here do not necessarily represent the views of the Public Health Agency of Canada. Allison: We'd also love your support for our podcast, so hit that subscribe button on Apple Podcasts, or YouTube, or wherever you get your pods. I'm Allison Sekuler. Jay: I'm Jay Ingram. Join us for the next episode of Defy Dementia, where we'll learn about how loneliness impacts the brain and what you can do about it.