The Current - What’s it like to have dementia? This care centre can teach you

Episode Date: March 27, 2025

Burnout is a very real challenge faced by caregivers for aging folks. That’s why educators are finding innovative ways to help caregivers better understand the conditions their patients or loved ones are living with. As part of our ongoing series As We Age, Matt Galloway visits an aging education centre for himself — and test drives a dementia and frailty simulator.

I've been covering politics for 20 years and I can't remember a time like now when everything we thought we knew has been thrown in the air. From Trudeau's resignation to Trump's tariffs to a spring election during huge shifts in the polls. There's a lot at stake and power and politics is here to guide you through it. I'm David Cochran and on CBC's only political

daily I speak to the key players in this election. From the candidates to the analysts to the journalists on the campaign trail, you can find power and politics wherever you get your podcasts, including YouTube. This is a CBC Podcast. Hello, I'm Matt Galloway and this is the current podcast. Whether you are doing it professionally or for a loved one, being a caregiver

can often feel challenging and relentless. In our series, as we age, we are hearing from you about getting older and all the things that come with getting older. And often that means caring for an aging parent or spouse and how it can be a 24 seven job to help those who have become frail with age or are suffering from dementia. Marilyn Sunshine is 76 years old. She's the primary caregiver for her husband, Joe. He's 78 and he has Alzheimer's.

Marilyn, good morning. Morning. Tell me a little bit about, about Joe and what life was like when he was diagnosed with Alzheimer's. Um, well, Joe had a stroke in 2020. Subsequently, he had aphasia, which is loss of language mostly. He didn't have any physical disabilities. And after that, he did not improve. And we went to see a neurologist who diagnosed him with Alzheimer's not related to the stroke. So that's about two years ago and his condition is

gradually getting worse. Physically he's okay, he can manage to dress himself, feed himself, but his memory and loss of words is very frustrating for him. So I'm his permanent caregiver and I look after all his day-to-day things that need to be done. What is that like for you as a primary caregiver? Exhausting. Exhausting. Yes, it's a 24-7 job. As his memory gets worse, he forgets things and he constantly needs help. His hands are getting worse, he drops things, he forgets sometimes how to use a remote,

he forgets words. He just needs help constantly and I need to be around him most of the time just to help him out with things that he forgets. He has started more recently to say the reverse. He'll say it's cold outside when it's hot outside. He'll say no when he means yes. And it becomes very sometimes argumentative that did you mean yes or did you mean no? Sometimes he realizes he's saying the wrong word,

but often not. And it's just constant. Tell me more about the communication. You mentioned that the stroke left him with aphasia. What is it like beyond kind of confusing some words to communicate with each other? We sign language and I write things down. If after a couple of times

he doesn't understand what I'm saying, I write things down. His reading is very good. So if it's not working, sometimes I'll write things. I'll write yes, no, and he'll point to yes. Are you cold? I'll use hand motions. And we get through the day like that. What sort of changes have you seen in your life and have you had to make in your life

since all of this happened? Oh, it's become very isolating. Friends mostly don't understand this illness and it's very difficult for him socially to interact with a conversation with friends because if we're talking about something it takes him a while to pick up the conversation and in normal conversation people have moved on to the next thing while he's still trying to comprehend the first. So it's become isolating and people don't understand. I mean, some do, we have some very good friends,

but a lot of people have just gone by the wayside because that's how it is, I guess. And you had to move house as well, right? You're out of your house and into a condo now? We were in a two-story house. As Joe's mobility got worse, we could see that the stairs were becoming problematic. Before he had an accident, we decided that we should move to somewhere that was safer.

What kind of help do you get? I mean, does he is able to go to a day away program or things like that? He goes to a program at Baycrest twice a week that he really enjoys. He socializes with people there. And they really like him. He's a very sociable person. And sometimes he tells me about what he really enjoys. He socializes with people there, and they really like him. He's a very sociable person, and sometimes he tells me about what he's done. Sometimes he forgets as soon as he leaves there. It's good for him to not be sitting in front of the TV watching Netflix.

What other kind of support do you have? None. None? No. What about friends or family or anybody like that? You know what? Our kids are all busy with their own lives and on the weekends we do see them and they would be available if needed, but everyone's busy with their own lives, their own careers,

their own families and friends. None of them, nobody takes them out. Very rarely you will get in touch with a friend and go out for lunch with someone. It's just our world has become much smaller. This would not be what you had planned for your retirement. We had hoped to travel and, you know, see things and no, this is not, this was not the plan. How are you doing in all of this?

Like I said, exhausted. It's constant. We went away on a vacation, not this past year, but the year before. And it was not relaxing for me because I always had to have my eyes in the back of my head to see what he was doing. He has a lot of anxiety. And he's better off, both of us think, in a skit at home where he has a regular schedule.

I don't mean to pry but I can imagine, I mean no one's trained for something like this as a family caregiver and you're thrust into it and it can be frustrating. There must be some really difficult moments. Absolutely. When Joe first came home from the hospital after he had the stroke, I wasn't trained for how to help him with his vocabulary or his cognitive senses. Yeah, it was very, very frustrating. Pete How do you find patients in those moments? Dr. Julie Bollinger Do I find it? I do my best. You know what, it's hour by hour and I just do my best. Sometimes I lose my patience and then I feel bad.

It's not his fault. He loses patience with himself. That's the reality of this illness and this situation and it's not gonna get better. And you can only do your best. Yeah. I mean, we wanted to talk to you in part because we're having these conversations

about getting older and the things that we don't really talk about because we're afraid to talk about them or we want to pretend that it's not going to happen to us or what have you. What has this made you think about when it comes to getting older and your own aging, for example? Yeah, that's one of my fears is that something happens to me and I can't look after him. I'm concerned more about what happens to me based on who's going to look after him and how he's going to be taken care of.

I've already told him sort of in a joking manner that if something happens to me, I need two months to train somebody for my job. Because he has, everybody has idiosyncrasies and things he likes and things he doesn't. And that always is in the back of my head. I said at the beginning that there are a lot of people who will hear themselves in your own story. What would you say to somebody who is in a similar situation to you?

Be very patient. I'd look after yourself. Are you looking after yourself? You know what? I have started. I've had some health issues, and I think a lot of them are related to the fact that four and a half years, almost five years, I have not looked after myself as much as I should. But I'm starting to look after myself more because I can see that my health is being

affected by his illness. I said to Joe one day, you had a stroke and I've aged 20 years. I'm really glad that you'd be willing to talk to us about this. As I said, there are a lot of people who will hear your story and hear themselves in that. I wish you the very best and I hope you do take care of yourself in the midst of all of this. That's important as well. Thank you. Thank you so much. Marilyn Sunshine is 76 years old. She's a primary caregiver for her husband, Joe.

Burnout and that daily challenge of being patient. I'm Zing Zing. And I'm Simon Jack. And together we host Good Bad Billionaire. The podcast exploring the lives of some of the world's richest people. In the new season, we're setting our sights on some big names. Yep, LeBron James and Martha Stewart to name just a few. And as always, Simon and I are trying to decide whether we think they're good, bad or just another billionaire. It's a very real experience for caregivers in the home and healthcare settings.

That's why there are efforts to try to find innovative ways to equip caregivers to better understand and help those they care for. Megan Adams is the manager of simulation and virtual learning at the Baycrests Centre for Education and Knowledge Exchange in Aging. That's in Toronto. I went up to Baycrest to try a couple of the training simulations they offer to caregivers. We're going to dress you up in what we call a frail aging suit. And it's going to make you feel about 30 years older.

It's going to make you move differently. It's going to make you change your senses a little bit. So the way that you experience the world around you feels different. Feels like what someone who is older and living with frailty will experience. We'll talk more about this after I do it, but what's the point of something like this? What are you trying to teach people and instill in people? Empathy, mostly. It's the idea of experiencing something that you will not have experienced.

The people we put in this are not frail older adults, so they get to embody an experience that's different from their own. And we hope that it changes the way that they approach and interact with the people they work with. I'm going to feel 30 years older. Yeah. I don't know that I want to feel 30 years older. I'm happy with the age I am now.

Yeah. You know, well, if we're lucky, we all get to age and, uh, there's a difference between healthy aging and developing something like frailty where you have physical and physical and sensory limitations. It's hopefully not the future ill experience but it's what some people do experience. Suit me up. Okay let's go. Let's go. So the first thing we start with is this jumpsuit and the limbs are weighted so you'll feel this when you go to put it on. There's weights in the arms and in the legs. This is like this colorful orange and red jumpsuit.

If I get lost, you'll know where to find me. We won't lose you. No. This is heavy already. Yeah. It's not like putting on, not that I normally put on jumpsuits, but my clothes normally aren't weighted like this unless they're filled with stones or something like that. Well, it's the idea that as you get older and are less strong,

it's harder to move your arms and your legs. Okay, have a seat. These are restrictive bands. We're going to put them around your elbows and your knees to restrict your range of motion. Like you have arthritis and you're stiff all the time. Okay. I'll take that leg. Other one. We're going to do the same thing for your elbows. Okay.

And then we'll do this. This is going to go around your neck. Okay. And it's going to force you into kind of a forward head posture. Okay. You sometimes see older adults adopting. Not gonna let you move your neck the same way. So I can't really.

You can't really. Turn, lean back. Yeah. Okay, and then come on and stand up, but I'm gonna have you hunch over because we're gonna strap the, we're gonna simulate. Oh, so like I'm hunched over.

So these clips are gonna prevent me from kind of leaning back. Keep you there. And you're not gonna be able to... Don't try to stand up straight. I already don't like this. I know. Goggles.

We're gonna restrict your field of vision. Earplugs. One in each ear. It's actually hard to put these things in with all of this stuff I know already been done to me. I know. I guess that's kind of the point. It is, yeah. And then last but not least you get gloves. Okay. Because tactile acuity changes and you're less sensitive. Okay. I'll give you a cane. Alright, let's go for a walk. If you say so. Let's head down to the books over there.

Okay. Do I just go? Yeah, just go. Like, it's really, you can't see where you're going. You can't stand up. Like, everything is heavy and slow. And I mean, if I was to try and go faster, like, I don't feel safe going faster. Do you know what I mean?

Try and pick a book off the shelves. Try and pick something that you would want to read. Well, I can't see what I would want to read because I can't read any of the titles. I have no idea what I would be picking. And when you go to try and take the book, like your hands are all slippery and you can't grab anything and you're not sure whether you're going to drop the book.

I can't read anything that's in there. I don't know if that's the book that I actually want to read because I can't read it anyway. And what. I don't know if that's the book that I actually want to read because I can't read it anyway. And what if you were in line at the grocery store and I was behind you and I was like, you know, like trying to rush you a little bit. I couldn't move any faster. You would be stressed out because I can't see. My field of vision is super narrow and limited now. Everything in front of me is gauzy and like there's Vaseline that's been smeared on my face. But you also feel like the neck thing is actually really restrictive. Your head is pushed out and the weight on your body, like it's tiring.

Yeah, it is. You feel, that's hard to describe. You feel reduced in some ways. Yeah, I think that's a good way of describing it. And you can't experience the world. You don't see it, you don't feel it, you don't hear things the same way. When we do a workshop with it, we'll give you an activity.

So we'll say, okay, we're gonna pretend I'm a physio. So we'll pretend we have a physio class and I'll make you do 10 times sit to stand, or I'll make you throw and catch a ball. Sometimes we do things that are a little bit sneaky. So you would go over there and then we would stand here and have a conversation and you can't see us, you can't hear us. It makes you feel anxious. Yes. There's a real anxiety. Like one of the things about being, you don't realize how able-bodied

you are until you aren't, is that there are things that I can't, I mean I can't perceive certain things. I can hear you but it's kind of muffled. I can see you but it's again like really gauzy and you're kind of fainting off in the distance and there's other people around, but I don't know what's going on. And if I were to say to you, okay, come with me. We're gonna go over there, follow me.

And then I took off. And I'm trying to make sure that- I'm just walking my normal pace. Yeah, like I usually walk pretty quickly and this is about as fast as I can go right now. If I were to go any faster, I think I would fall. Yeah. Right? I would be worried that I would topple over and I might

step on, I don't know, it's beneath me. I can't really look around. So one of the things that you learn as you know someone who's going to work with older adults is it's a good idea to like walk here so you can set the pace and I'm at your elbow. Oh that's interesting. So you're just right at my elbow. I'm right at your elbow. You can't see me though which is not ideal. Yeah you move back there and I had no idea where you went. Yeah. Like you could have gone back to the other room or something like that. Yeah, I disappear from your field of view. Yeah.

This is really interesting. I mean, you see people get really emotional sometimes when they do this. Sometimes people get upset, they cry, or they... Because you feel something. Yeah, you do. You feel something that you wouldn't if I stood up in front of you and said, older people have different hearing and different vision and for LT, it looks like this. What's next?

Let's shake it off. What's next? I'm not gonna be like this forever? No, we'll give you a break. So once the suit is actually off, what's next is a different tool that they use to train caregivers. Megan Adams gives me a tablet.

This is a virtual tour of a long-term care home from the perspective of someone living with dementia. And so one of the things that can happen when people have dementia is they act in ways that are maybe not consistent with how they normally would. We call them responsive behaviors because the idea is they're unable to communicate that a need is not being met. This tours someone through a long-term care home. There's little hotspots that you can point to

and learn about things that might be interpreted differently by someone with dementia. This is a bit like wearing that suit that you don't know what you don't know, right? That something like this you might think, well, the TV is on. Why is somebody gonna be bothered by the TV or that painting seems fine to me,

but it might not be fine to other people. And the one that I use all the time is in the bathroom, there's a robe on the hook on the back of the door. Could a hanging robe be a potential trigger where you might think, well, it's just a rope. Presumably is a potential trigger. Jerry may confuse the robe with an actual person, which could cause stress because it's just hanging there. Yeah.

And if you're the caregiver and you're helping Jerry use the washroom, you're not going to understand that unless you think about it. So you're just going to see someone who's resisting the care that you're trying to provide. And you have no idea why. And they may not be able to explain to you why this is an issue. You just think it's a robe. Yeah. You might not even realize that that's the problem.

They're just not going through the door because they're scared that there's someone hiding behind it. So by understanding and thinking about what you could do about it, you move away from thinking this person is just being difficult to there's a need I don't understand and let's fix it. It's really interesting because again, it takes the onus away from the patient, from the resident, from the person who might have that issue and puts it back on you to try and figure out what's going on.

It's not like they don't have agency or that they can't be empowered, but it gives you kind of the control over what can I do to make the environment better. How can I help? Yeah. How can I help? Yeah. Yeah. That's great.

That's super interesting. Can I ask you some more questions just about how this all works? Sure. Thank you. So I just did all that stuff. Wore this heavy suit, couldn't see, couldn't walk. We talked a little bit about it before, but why is it important to have workshops like this with those sorts of things? We put those things under the umbrella of healthcare simulation. We're using tools, creating experiences that are close to real life as much as possible,

but are also in safer environments or less pressured environments. And it's an opportunity for people to learn skills and apply knowledge in a way that is safe. They're not doing something new for the first time in front of a patient or a resident. There's a lot of different tools we use in health professions education, but that's the value of simulation. What do you hope somebody would learn from wearing that suit? We tend to use it for empathy building, perspective.

I hope when people take it off, they think or they say, I feel differently. I think about things differently now than I did before I put that on. I had a sense of relief when I took it off as well. Do you know what I mean? Like I had a sense of feeling things that I, you know, restrictions that I didn't expect, but also getting those removed, felt like, okay, I'm back to myself in some ways.

Have you done this before? Have you worn it? Yep. What happened the first time you wore it? I didn't like it. Like I understand it and I understand the objective, but I don't like the way it makes me feel. What didn't you like about it?

I don't like the feeling restricted, much like you. Like I don't like feeling like not myself. But you also said, I mean it is you in some ways. You said that in some ways this is about how we'll feel when we're 30 years down the line. Maybe, yeah. Maybe. Yeah. It's designed to simulate frailty, which is not the universal experience of aging. Aging is different for every single person, but from a clinical sense, frailty is like a specific set of symptoms, and that's what we're trying to simulate.

And it makes me value how well I can move now and think about how I want to keep that into the future. Do you think about other people in your life who might be older and wonder? I mean, how we see people is one thing, but how they live and how they feel is something different. Absolutely. Who do you think about? I am very lucky. I have one, two, three, four living grandparents. Lucky you. Yeah. And I knew my great grandmother for a long, long time. So I think about them and

I think about how they're getting older and things are changing for them in ways that they don't like, they're not happy with. And how can those of us around them who are helping and caring for them, how can we preserve their dignity and their autonomy in some ways when in other ways they need more from us? But that's the other thing, like I didn't like it but they don't like it either. I would not like it if I were suddenly restricted in certain ways in future. Yeah. You talked about empathy a couple of times. Yep. Why that word? I mean there's perspective, that's one thing, but empathy is

something different. I think of empathy as like, you're not feeling bad for someone. You are understanding their experience, in this case, in a very visceral way. And you feel a little bit of what a frail older adult feels. Do you think in a healthcare setting where, I mean, it doesn't matter whether you're looking at elder care, senior care, whether you're looking at, you know, primary care, emergency departments, it feels like the system is being pulled in a million different directions all at the same time. What does that do to our ability to cultivate empathy? Makes it hard. It makes it really hard when you're being asked to do more with less.

It's hard because it requires that you step back and you think about an experience that's different than what you're having in the moment. So we have to be intentional about giving people opportunities to do that, to step back from the constant day-to-day rush and connect with why they're in the careers that they're in. People are in healthcare because they value caring and working and helping other people. It's a helping profession. We try to be intentional about giving people opportunity to reconnect with that.

Mad Fientist If we don't have that, I mean, we're sitting here in this office and you can see people going by. People are out for walks. People might be caregivers are pushing somebody in a wheelchair, what have you. If you were always thinking, I have somebody else that I have to see and what time is it and I need to because we have other people that we have other people, what happens to that care if that empathy isn't there? Yeah, it changes it. And we've done a lot of work with, we call it relationship-centered care. And there's a model of care that we're pioneering and an education experience to help staff adopt that type of model where you value the relationships between staff members and between

residents and family members and everybody involved in a particular community. That becomes the priority rather than did you complete your checklist for the day. And it's challenging. It's a shift for people to move in that direction. But we're finding that as we help them learn to work in that way, it changes all kinds of things. It changes the resident experience, the family member experience, staff feel better about the work that they're doing. There's a lot of value in kind of trying to steer away from a checklist. That sounds like a big change. I mean, we talk about systems changing in health care, but that sounds like a big change. I mean, that's money, that's people, that's time, but it's also a value kind of proposition, right? What do we value in health care? And what do we

value in care? And the care has got to be empathy-based. That seems like a fundamental shift in some ways. It is. And that's possible? It is possible. It's happening over at the terraces. Yeah. Yeah. Who benefits the most, do you think, from this kind of experience?

Is it the resident? Is it the caregiver? Is it the family member? Who do you think gets the most from something like that? I think it's everybody. Ultimately, my goal in the work that I do is improve the care that's provided at the bedside. That's outcomes for patients and residents and families.

When you think about the patient or the resident, the care that's provided at that interface, that impacts everybody. So ultimately, my goal is the person receiving care. But if we improve the outcomes and the experience for that person, everybody else is going to benefit too. And people feel better about the care that they're giving and your family members presumably will feel better about the care that their loved one is receiving as well. Yes.

And the people who are family caregivers, the people who are providing care along with all of the other things in their life, they feel better too. We alleviate some of the burden on them. Most people are not going to have the opportunity to come and do this. It's fun and interesting. Fun maybe isn't the right word, but it is. There's something that is out of your normal experience in doing something. Not everyone's going to have the chance to put that suit on and feel 30 years older. For people who don't have that chance, what do you want them to think about to try to get to that place of empathy? That's what I mean for the caregivers who are, as you said, home caregivers, other people

who are in this, if you can't imagine yourself in somebody else's shoes, what's that first step do you think? I think you need to listen. It's easier said than done because you become a caregiver usually in times of crisis, not necessarily a healthcare provider or a professional caregiver, but a family caregiver usually takes on that role in times of crisis and they're working under pressure, lots of stress, lots of unknowns. I think if it helps to have an opportunity to step back and think about, you know, the person that you're caring for and what you know about them and trying to remember all of those things.

But that allowing a caregiver to have the time and the space and the opportunity to do that is a resource issue. There has to be some respite. There has to be some support in place. I think it goes back to what we were saying is care improves when we can prioritize the relationships that caregivers have with the people that they're looking after. And to listen to what those people are going through as well. Yeah.

And we talk about it in professional settings. Learn about the person. Learn about their history and the things that they like. Because they are still a person. They're a person with dementia, but they're a person and they have preferences and histories and families and wonderful rich life stories. And if you can connect with that, you connect with the person that's still there. What do you get out of this work?

I love the work that I do. It's really rewarding to work with healthcare professionals who are so dedicated and who are working so hard because everyone in the system is these days. The ultimate goal of my work is to make things better for the people receiving care. And I think that's something that I feel is really important. So it's personally rewarding too. Thanks for doing this.

I really appreciate it. This is, I mean, again, unless you have a time machine, you don't get to go ahead 30 years and experience what life might be like. It was really quite something. I didn't know what to expect and it was a lot. Thank you very much. Thank you for coming.

Megan Adams is the manager of simulation and virtual learning at Baycrest Centre for Education and Knowledge Exchange and Aging that's in Toronto. We will continue our series as we age over the next few weeks. We're talking about getting older and what that means for all of us. We're working on a range of stories, including about

solo aging, divorce in later years, facing money troubles, finding the humor in growing old. If you want to share your own experience with us about getting older, you can email us. TheCurrent at cbc.ca. For more CBC podcasts, go to cbc.ca slash podcasts.