Dementia Dialogue; Season 3, Episode 34
Dementia Inclusive Choices for Exercise
Transcript of interview with Carol and Brian Johannesson and Dr Laura Middleton
David - Welcome to Dementia Dialogue and our interview with Carol and Brian Johannesson and Dr. Laura Middleton of the University of Waterloo.
Carol is the principal knowledge user and Laura, the principal investigator on a research project, Dementia Inclusive Choices for Exercise.
Let's listen in on our interview.
I'd like to thank you very much for joining the conversation about the Dementia Inclusive Choices for Exercise project.
Carol, you were just talking just as we were starting about your family. And I'm wondering if you might just let us know about the number of children you've got, grandchildren and a little bit about your family.
Carol - Well, we have four children and three sons and a daughter (last child) and seven grandchildren and two greats.
David - Carol, I'm wondering if you might describe to our listeners a little bit about your diagnosis and also one of the things that intrigued me was your participation in the Tai Chi program.
Carol - Well, I think it was just assumed automatically that I had Alzheimer's because for some reason it was agreed that my mother had Alzheimer's and my grandmother did and my great grandmother. I guess the background is because I expected it, because now I was the fourth generation of people who have had this problem. And we went to St. Mary's Hospital and the doctor promptly diagnosed me as having Alzheimer so I believe him.
And since then, I found other people. I know one person in particular who got the same diagnosis, who also does not have it. It's just in my case, they came to the conclusion that it was vascular dementia
David - In your own personal life, Carol, what kind of change would you say you're experiencing as a result of cognitive decline?
Carol - The biggest thing of all was not having a driver's license anymore because I was very independent and suddenly now everywhere I go, somebody has to drive me. That was the hard part.
David - Brian, I'm wondering from your perspective and maybe the perspective of your, you can't speak on behalf of your sons and your daughter, but you know, from your own perspective and from the family vantage point, how have you kind of experienced changes in Carol's life and her ability?
Brian - Well, because of Carol's mother, I knew what to look for. And all dementias are different but still I noticed enough of the symptoms were the same that I realized what was happening. And we just sat by and watched the whole thing unfold.
Sometimes I feel like King Canute. I consider the tide but I cannot stop it. All things keep rising around me. Very slowly, thank goodness.
David - When you moved to Waterloo, I understand that you took advantage of some Tai Chi program that was fairly close to you. I think maybe even across the street. I wonder if you might describe a little bit of your experience there and how you came to get involved in that program.
Carol - Well, I went across the street to the community center and said, “I'm looking for something to do”. And they told me all the things that I could do and I thought, “Tai Chi, that sounds interesting” so I got registered in that class. And that was a good twenty years ago I've been doing it and up until I broke my hip at the beginning of Covid, I was active and in various ways.
David - Were you back in your earlier life, in your middle years or younger years, were you like an active person?
Carol - Yeah, I walked a lot. We live on a sort of a big circle where you didn’t have to cross any streets and there’s woods in between the houses all around. I walked with one of my neighbors practically every morning. Sometimes I walked at lunchtime and sometimes I’d walk again before the kids came home from school. I walked a lot.
David - I'm wondering, Laura, if you might describe some of the main components of the project. And I'm especially interested in the idea of inclusivity and how that particular terminology ends up in the title of your project. So it's obviously a main component of the overall activity.
Laura - Absolutely. The DICE project or the Dementia Inclusive Choices for Exercise Projects has the aim of improving access to physical activity programs and supports amongst people living with dementia. And early on we realized that you couldn't do this just by dementia specific programs because people have all sorts of different abilities, they have all sorts of different interests, and we don't want to restrict them to a single program, even if that program is fantastic. Programs like Minds in Motion that we've all worked on or participated in.
So the goal was to make the physical activity centers and programs that are in that the people's communities and make them inclusive of people living with dementia so that you don't have to go to the one specialized program, you can access the one that's just down the block, the community center, as Carol was talking about, across the street from her building. We want people to be able to access all of those.
David – So when you when you say you want to make them inclusive, what are some of the elements that you're driving to try and increase that inclusivity?
Laura - So the early phase of the project was really understanding what were the barriers from the perspective of people living with dementia and their family care partners, but also from the perspectives of people providing programs, so exercise providers or exercise professionals.
So we did focus groups amongst them, and what we found out is that people don't know anything about dementia. They've kind of figured it out or they have a family member or they've encountered one or two people in their work. And sometimes that's the emergency room where people are upset. So their whole idea of dementia is from that lens, from that one experience.
So we knew that if they were going to be inclusive, we had to give them a more holistic understanding of what dementia was, the breadth of the symptoms that people might experience. Help them understand that dementia can actually be quite mild where you might not notice it if you're interacting with someone casually to have more severe symptoms as well.
So often people have this more kind of single view of what dementia is, which is often later in the dementia journey. And we wanted to help them understand that no, dementia is this huge spectrum of people who have the same experience as you and I, who have families and friends and activities that they enjoy. So part of supporting inclusivity was giving them the whole picture of what dementia can be.
We also have a second part that's really talking about the rights of people living with dementia to inclusion. You know that this isn't just a nice to do, but something they really should be doing, just in the same way that they think about including people of different physical abilities they should be thinking about including people of different cognitive abilities.
Now, that inclusivity has to consider all aspects of a person's ability and their experiences. And then we also have general tips on how you can do that. And we say in parts of it that some of the things that you do to be inclusive of people living with dementia are also things that would help include all sorts of different people. It's the way you place signs at a facility, it's the way you speak and communicate. A lot of the recommendations are good communication for everyone; getting one idea at a time, introducing yourself clearly, reinforcing points if needed, thinking about your environment, that the noise levels, what clutter there is, thinking about the placement of mirrors that can sometimes be confusing.
So those are the elements. Understanding dementia, understanding the rights of people living with dementia, and finally, some suggestions of how you can be inclusive. And part of that, I've talked about general approaches, but part of that that you emphasize as being centered on the person and their abilities and preferences because as we know, every person living with dementia has a different experience and slightly different symptoms, too.
So it's recognizing what that individual needs to be included, and sometimes it can be really subtle changes.
David - A couple of questions come to mind. The first is around receptivity. You mentioned the focus groups and then there's the findings from that. How receptive did you find exercise providers to the overall project or to the idea of inclusivity? Was there resistance or were they mostly keen once they kind of understood?
Laura – Now, the people we had involved were generally quite keen. And I think one, of course the people who participate in research around exercise and dementia are probably going to be more keen than the average person. It's a biased group, of course, but I think they were also people that understood, they were all people who are delivering exercise to a broadly defined older adult group, at least as part of their practice. And they all understood that they had people coming in that had some sort of memory impairment or changes in attention, whether they knew they had a diagnosis or not.
So they were making adjustments, but they were doing it by just figuring it out as they went. So they were trying to accommodate people, but they didn't have any background training or education to position them well to do that. So they just had to figure it out on their own. So they were keen to have something that would actually give them the background knowledge to make good decisions and not trying to wing it.
David - Okay, you sort of answered my second question a bit. It was around distinguishing dementia and normal aging. Because I think sometimes when we're advocating for dementia, we've also got the hurdle of normal aging to deal with plus then dementia. But in this case, your group of exercise providers and were experienced in supporting older people in exercise.
Laura - Yes. And I should say we require that at least as part of their practice, they work with older adults. But we had people anywhere from people delivering exercise as personal trainers in private exercise facilities to people in day programs to people at the YMCA, which has one of their aims is inclusion.
So we did have a broad range of people in these different places where the focus on including older adults may be greater or less and whose environment might be more or less inclusive as well.
Recognizing that each person is going to need different supports and so that any of the tips that we provide is really a menu of options that you will use depending on the person, and not all of these will apply.
And then some kind of core principles around optimizing communication, paying attention maybe a little bit more closely to understand how they're doing that day and what they need. Encouragement and getting people to challenge themselves still, as well as just being adaptable day-to-day. But we know that.
Carol is talking about this as well, that the encouragement and the support and the helping them to still improve and engage is one of the things that people value most actually from exercise providers.
David – Carol, when Laura has said the word encouragement, you gestured to reinforce that point. I wonder if you might speak a little bit about what you see as the value of encouragement in helping people with dementia participate in exercise programs.
Carol - I have a really short example of one that worked. In my whole life I'd never done a push-up. But Laura's colleague, Kayla, was one of the people that helped me when I took the exercise classes. She was one of the people standing cheering me on when I did my first and only push-up I've ever done in my whole life. She just kept that up until I got it done.
David - When we think of exercise and dementia, when those two words appear on most screens, it's mostly in terms of exercise as a prevention in terms of dementia. So it's aimed at forty-five year olds or fifty-five year olds as a way of preventing dementia. But here we're talking about exercise as a way of helping a person who's already diagnosed live a better life.
How do you find exercise has helped you with your quality of life after your diagnosis? What are the benefits that you derive from it?
Carol - That's where practically all my friends are, at exercise things. And so it's helped me to keep in touch with them by doing as much as I can.
Brian – And it’s the mental stimulation of being there, concentrating and doing things with your friends.
Carol - I'm fairly certain there are a lot of people once they get the diagnosis, figure, “Well this is the end of everything”. And I think some doctors maybe even think that.
Brian - And it all depends on the care partner. If the care partner doesn’t care then the whole thing comes apart.
David - I'm wondering, Laura, if you might be able to describe some of those competencies that you think are important for an exercise provider to possess as they approach their job.
Laura - I would say that someone who is going to be supportive of people living with dementia, is probably a good exercise provider broadly. I think characteristics that make someone good in this context are the same characteristics. It means that they look at the person and try to understand their abilities, their goals or priorities, their preferences, regardless of whether they are living with dementia or not. That there is someone who's going to pay attention and be adaptable to how the person is feeling, day-to-day. They may be feeling less energetic. They may be feeling frustrated. And that's the same for anyone, right?
Anyone can feel frustrated based on things that got in their way, getting ready or difficulty about finding a parking spot. And that's just going to change how they feel going into any given exercise session, whether again, whether they're living with dementia or not.
The encouragement is really key. It's not about the instructor, but about enabling the person, again, whether they're living with dementia or not, to succeed in the things that are important to them and to structure the program in a way that they can be successful. Again taking into account their preferences and goals.
And then just always being adaptable. I think the communication is probably the most learned skill that can help and inclusion, especially for people who have more challenges with language learning, too. And it's something, as I've said before, that I am still working on trying to communicate one message at a time, reinforcing, breaking down things into their parts where needed.
We're learning ways to use non-verbal communication as well, both in listening and watching for signs, as well as using that to communicate messages, are things that can be learned, but that are things that are going to help include people of various abilities, including people living with dementia.
But I think an important starting point is someone who is open and pays attention to the people they're working with and adapts based on their needs and preferences. And a good exercise professional will do that regardless of who they're working with. But maybe even more important here, where we know that your needs and abilities may change day-to-day and certainly over time. And so recognizing that the supports that you may give might have to change and be adaptable at the same time.
I think one of the things that resonates as well is recognizing that controlling the environment can also help inclusion. The level of music and noise, how the signs are arranged, the flooring even, that can help support inclusion. And that's one thing that people often don't realize is that you can alter the level of the music, the type of music that's played, for example, to support inclusion, and they often don't. I think because the sensory changes and perceptual changes in dementia often are well known, people often don't realize that how the environment is set up will really change the ability of a person living with dementia to participate.
And I think part of feeling safe, too is the exercise provider paying attention to them. The person living with dementia knowing that if they are doing something wrong or they are not able to monitor themselves, that there's another person there that’s going to see that and help them and correct them, is a big part of feeling safe.
David - Carol, you might be able to, or Brian, either of you, describe from your understanding, your point of view how you think people with lived experience might have contributed to how the project unfolded.
Brian - Well, I think occasionally from time to time, the interviews are not a reality. Just some of the decisions, just because most of the people who are doing things in the project probably aren't as familiar with dementia as we are. So from time to time there may be some conflicting ideas, we like to mention to the project. Keep it on the rails.
David - Carol, do you have any thoughts along that line about what you or your fellow laypeople might contribute to the project?
Carol - Basically, I think the same thing. Unless people actually live with it or, as in Brian’s case live with it, you don't really know.
David – Laura, from your point of view as a researcher, what do you see as the important contribution that folks like Carol and Brian have to influencing the way you do your work and the goals of the project?
Laura - I think their contributions have been invaluable. As they say, they keep it grounded in what is important to people living with dementia. I think you've talked some about the benefits of exercise and what we see in clinical trials is exactly some of the things you've probed like functional abilities. We know those improve. And even care partners, the stress that care partners feel improve and the number of studies we see improvements in cognition or balance or mobility.
But in talking to people we know that really what's important is that social element and the connection with others and the encouragement and ability to succeed and things. That's what's important. And I think that is also what highlights that inclusion is important as opposed to just a structured exercise program. Because if it was just the exercise that was important, then maybe we could develop a home based exercise and you could get that physical movement. But inclusion and social engagement is the thing that people talk about most when you talk to them about their experiences in these exercise programs.
And so it leads to prioritization of that. I remember a number of different experiences that Carol and then Bill Heibein have brought up along the way. Certainly the importance of paying attention. That in terms of feeling safe and feeling like they are going to improve was one of the things Carol highlighted from her experiences that we need access to a wide variety of abilities. That some of the dementia specific programs weren’t inclusive of all people living with dementia because by nature, they had to include people of all abilities. But if you're healthier and more active, it's not necessarily going to work as well for you.
So those aspects were things that certainly came out from their guidance. Something even around sensory changes. That's still not well-developed in literature, especially a post diagnosis. There's again more attention to hearing playing a role as a risk factor for dementia.
David - Carol, I'm wondering if you have any key messages or thoughts you would like to people to take away from our discussion.
Carol - I think basically you're still you and you still have a lot of abilities and don't let people think that you can't do anything anymore.
David - And Brian, your thoughts?
Brian - I have several points. One, first of all, you must maintain a sense of humor about the situation. You can make jokes about the situation but you cannot make jokes about the suffering person that has dementia. That keeps the whole thing light and bearable.
You also must have a vast amount of patience because there's no point getting angry because tomorrow will be another day, and you’ll be exactly where you are today and nothing will have come of it.
The third thing is the caregiver must always remember that they are supposed to be the adult in the situation.
And the last and most important one of all is don't go down with the ship. Don't get so emotionally involved that you are no longer able to control the situation. That's probably the hardest part of all. I'm afraid that’ll have to do.
Laura - I would echo Carol and Brian's messages as most important. I think for people living with dementia, I'd say don't be afraid to share your diagnosis and ask for help.
Because you have a right to be supported. And it can be scary. But doing so sometimes has positive effects.
And to exercise providers, let go of preconceptions that they have with dementia and that a person living with dementia, if you treat them just like you would any other participate in your program. The same techniques will apply; pay attention and recognize them as individuals and the supports they might need and help them towards their goals in ways they prefer. We think that there might be a completely different way of doing things, but it's really the same principles that you'd have for working with any participant in the program.
They're a person with experiences and abilities, just like your other clients or participants.
David - Well, I just want to thank you very much again, it was a delightful conversation. The DICE Project has created some excellent resources and learning aids for both exercise providers and the public, including a home based exercise program for people living with dementia. You can access these resources at www.dementiaexercise.com
September is World Alzheimer's Month. This year's theme is diagnosis, an issue that is discussed in many of our episodes, especially in our series The System Journey.
You might want to listen to some of those episodes if you have not already heard them.
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