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Redefining Dementia
resources and helpful life experiences, the podcast will look to connect with the audience to provide helpful and meaningful takeaways.
Redefining Dementia
Anne-Marie Stoneburgh: Making a Good Day Great
What does it really mean to make a good day great for someone living with dementia?
In this thoughtful and inspiring episode, Anne-Marie Stoneburgh brings over 35 years of experience in geriatric care to the conversation. As an educator, consultant, and advocate for person-centred care, she shares practical strategies that honour the unique identity, preferences, and strengths of each person.
Through real-life stories and gentle wisdom, Anne-Marie shows how small, intentional choices — from the language we use to the way we adapt daily routines — can create moments of dignity, connection, and joy. Whether it’s supporting someone to continue a familiar hobby or adjusting an activity to reflect changing abilities, her approach is rooted in respect and responsiveness.
We explore topics like communication, environment setup, and the delicate balance between supporting someone and encouraging their independence. Anne-Marie’s mantra, “The more you do for me, the more you steal from me,” offers a powerful reminder about the importance of autonomy in care.
Whether you’re a care partner at home, a professional in a care setting, or simply someone who wants to show up more meaningfully for a loved one, this episode offers valuable insight into how thoughtful adjustments can truly transform the caregiving experience — one moment at a time.
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About our Hosts:
https://www.personcentreduniverse.com/about/
Welcome to Season 2 of Redefining Dementia. I'm Jana Jones and I am thrilled to be joined by my co-hosts, daphne Noonan and Ashley King for another season of fresh conversations, new insights and valuable tips on navigating dementia care.
Speaker 2:Hi, I'm Daphne. This season, we're diving even deeper into topics that matter, from caregiver resilience to meaningful engagement. Plus, we'll have a fantastic lineup of experts to share their wisdom.
Speaker 3:And I'm Ashley At Person Centred Universe. We help you provide person-centered dementia care at home, work or in your community. Through this podcast, our goal is really to strive toward a better world for those affected by dementia by sharing resources and insights from experts around the world.
Speaker 1:We are also introducing a new format this season with rotating co-hosts. You'll hear from each of us as we take turns leading discussions with incredible guests, some familiar faces and some exciting new voices.
Speaker 2:So, before we begin, just a special note the information that we share in this podcast is for educational purposes only. If you or someone you know is experiencing symptoms of dementia, we'd encourage you to seek medical advice from a qualified healthcare professional.
Speaker 3:So don't forget to hit that subscribe button and join us every other Thursday as we explore the many dimensions of dementia care. One conversation at a time.
Speaker 1:Welcome back to Redefining Dementia, the podcast where we explore the stories, ideas and innovations that are reshaping how we understand and support people living with dementia. I'm Jana Jones, and today we are excited to share a conversation with someone whose compassion and deep experience shine through in everything she does. Whose compassion and deep experience shine through in everything she does, anne-marie Stoneberg is a champion of person-centered care, with more than 35 years of experience supporting older adults across the full spectrum of aging. Through her work as a professor at George Brown College and the founder of her consulting company Two Steps Ahead, anne-marie has guided students, care partners and professionals in creating care that is respectful, empowering and deeply rooted in the unique stories and strengths of each individual.
Speaker 1:In this episode, we explore what it really means to make a good day great for someone living with dementia, whether that's adapting a familiar hobby to meet changing abilities, building a daily rhythm that feels safe and empowering, or simply noticing the small, meaningful details that bring joy and dignity to everyday life. Anne-marie also shares practical communication tips, the power of language and how we can gently advocate for the preferences and independence of the people we love and care for. It's a conversation filled with both heart and insight and I can't wait for you to hear it. So grab a coffee, settle in and enjoy this thoughtful conversation with the incredible Anne-Marie Stoneberg.
Speaker 4:Hi, welcome Anne-Marie. Thank you, Daphne. Wonderful to be here.
Speaker 2:I'm so excited and we. It's always my favorite. I mean, podcast interviews are always my favorite, but I always find it extra special when I get to interview someone who has been a mentor in my life. So thank you for being here. You're one of those people so excited.
Speaker 4:Thank you, Daphne. I'm thrilled to be here.
Speaker 2:So we're going to just jump right in because we have lots of questions and I'm sure we're going to have lots of really good discussions from our questions. So I'll start by just asking you, you know, a question around a concept that you've really, I guess, made a bit of a mantra or like a common perspective that you talk about with your students and in your work, trying to improve quality of life for older adults, and so it's the concept of making a good day great for people living with dementia. So what does that look like in practice and why is it so important?
Speaker 4:oh, such a great question. And, um, you're right. I come up with these little you know taglines or mantras and I say to students always as well, find your mantra and use it as you go out into professional practice good day great. Let's look, for the starter, at things such as boredom, loneliness and lack of success. Those are three components for me that I think are of great concern in dementia care and, quite simply, as humans, we are doers. Bottom line is people living with dementia A do not do enough. Whatever that doing is Adaptations for success for a given activity are not made and we are not really including our person, our loved one, in activities that are of interest to them. That meets their needs, skills and changing abilities as brain changes. So when I look at, making a good day great means to me that we really need to know our person, we need to know their likes, what's important to them, little personal touches that enhance feelings of self-esteem and confidence for them.
Speaker 4:So it's almost like a you know, you can call it a cheat sheet if you will, and it can be used in a variety of different settings In long-term care. I have my students working on an assignment where they're working with a resident one-to-one to find out what some of those really really important things are that you and I might not see as important. So an example I have, actually of my mom because I certainly made one for my mom when she was living in long-term care and that was that she simply always had to have her lipstick on and her nails done. And you know what for you and I hearing that and for many people thinking, okay, well, big deal, but that was so important for her because it made a good day, great. So by making sure that those who are caring for her know that and that they're either able to say, mary, I've got your lipstick here, would you like some assistance, or would you like to put it on? Or if, in her brain change which did eventually happen to my mom, it was put on for her, but it didn't matter because those were part of her past and they're part of her present now.
Speaker 4:So so it's almost like what could we do just to enhance that feeling of belonging, feeling of self-esteem for our residents, and it could be something as simple as please make sure my blinds are up in the morning. I want to see outside first thing. How simple. Because, on the flip side, what that does is it might negate a reaction to their environment, because that is a trigger to the environment that we have control over changing.
Speaker 4:So what I like to think about is, if you can make a good day great, is there five things that you can learn about your loved one? Or, again, a resident in long-term care? That's going to make it A day for them, but guess what? A better day for you as the care partner. And that's the piece I think we often miss. We are wanting to to do things and we want to make things better, but we're not making it better for ourselves. And we can do that if we work closely with what are the interest, skills, needs, abilities, what brings our person pleasure, joy and increases that self-esteem here I go on a sidebar already, but, um, this is an important one.
Speaker 2:It's it's like reframing, like I love, first of all, when you say the five things, because that's really practical right and those and it's it's little things right. So there are of, there's a place for organized, you know, leisure and things like that. They're all you know in facilitating someone to be able to continue hobbies and things that they did. But those little things are equally as important, like how does the person like their tea or their coffee, or putting the blinds up, or do they like to hit snooze three times before they get out of bed, or things like that. And I think that sometimes we focus a lot on the other end of it, which is like that kind of organized, facilitated things where maybe not in the context of finding a balance of the little things too, that really, when added all up in the sum of a day, can make a huge difference if it's routine things right that we often overlook.
Speaker 1:Yeah, I love that. And then, on the flip side, I know that there are care partners right now at home spending the day with their loved one who's living with dementia who are struggling really to know how to fill their day in a meaningful way. So, annemarie, what advice would you give for helping those individuals structure the day at home for their loved one living with dementia in a way that brings both routine and joy?
Speaker 4:Great question and I think you hit the nail on the head, jana. You said meaningful, so let's zoom out on that a little bit, because that's what it's important. Meaningful to who? Who is this meaningful to and what does that mean? So who is your person right? So who is your person? It's always person first, so let's know that person, get to know that. Know, I'm going to put it right out there. This is hard work. This is hard work.
Speaker 4:We know that in caring for our loved ones who have brain change, this is not easy. There's loss, there's grief, there's sadness, there's anger, all of that rolled into, you know, a nice, neat little envelope. So it's not easy. I totally hear that. But how about we again think about meaning? Tell me, tell me about mom. So, as a care partner at home with you, know, a husband, a wife, a mom, a dad, what's important to mom? Knowing that, who was mom? And I'm just picking on mom because I think about my own mom quite affectionately when I'm chatting with you. But who was mom? What was important to mom? Who knows the most about mom? It's you. Who knows the most about my beautiful husband or wife? It's me. I know most about my husband. So I want to share that with you so that we can think about what would make a meaningful day for him. I know his habits, I know his, you know his quirks, if you will. So what does that look like and how do we incorporate that?
Speaker 4:So here's an example for you that I did with my mom. So my mom was a bookkeeper in our early years and she had a really sharp mind and she was a whiz with numbers. And so what I found when she was living at home with my dad who, by the way, was not a very good care partner I don't mean that in any kind of malice, he just didn't have the equipment or the capacity to put this in play. I did so. I was so happy to be able to jump in and let him see that if we did this we could actually have a different day right. So again, back to can we make a good day? Great.
Speaker 4:So what I found, again at a value village, was an old calculating machine that had the tape in it that you know, for many people that might just be completely over their heads, but that's what I remember from my mom. She would sit in the in the office and she would you know, click her little calculator. So I found one for her in the office. And she, would, you know, click her little calculator, so I found one for her in the early days of her dementia journey. She would sit and add up the numbers on receipts that I collected so simple, and I would keep them in a box labeled receipts for mom. And then as her brain changed, so did the activity and that's the key, so did activity. We made changes to the activity and I taught my dad how to do that. So then we would keep receipts and she could no longer use the calculator from 1972, but she certainly could put them in an envelope. So into the envelope they went while my dad was doing the banking so again meaningful at a time when he needed to have something for mom to do that gave her purpose, while he was doing something that needed to be done because it was his task. And then, when the envelope didn't work anymore because that was too small in terms of pincer grip and hand-eye coordination, she still wanted to have that activity. So we changed it up and it became a box. She just put the receipts in a box, so it was putting the receipts in, taking the receipts out, putting the paperclip on, putting the paperclip off, and you know what, For many people you, the three of us not included why would you want to do that?
Speaker 4:That just sounds so silly and so simple. Yes, key, ding, ding, ding. Silly and so simple. Yes, key, ding, ding, ding. That's the point. I've gone back and I've looked at who mom was in the past and I'm working with mom in her present and again, heartbreaking as that is, this is her present and I want to make sure I find that balance and give that structure to my dad so that his care partner, journey and stress can be reduced just a little bit. So that's one example of how we would set up my mom's day and in setting up her day we were making his day easier. So you know, make time to save time. You got to put the work in the beginning to set some of these little tidbits up, but in the long run it was my dad I was trying to provide the relief for.
Speaker 1:I don't want to take you too much off the beaten path on this question or down a different road that you weren't prepared to go down. But I'm thinking also of those care partners who they know how to make a good day great. They have their day structured, they have it down to a bit of a science and have implemented so many great examples, like you just gave. But now they've come to the point where they are about to entrust their person's day to people in care once their loved one enters care. But do you have any tips for those family and friend care providers to help transfer that knowledge of what makes a good day great for their loved one who may be now entering a care situation?
Speaker 4:Yeah, for sure, and I always like to say that when we meet a family, when we meet a community of providers in a long-term care environment, for example, when they come to our home we're meeting a family in crisis or meeting a family in chaos, and how we define and measure chaos and crisis is irrelevant. It is, that's what it is. So there's just so much that's happening when that family comes to our door and there's so much that we don't know about that family that they have been living with, dealing with, coping with, celebrating and challenging both before they darkened our door. So again, for me, it's about advocating for your person to say this is what's important to my person, and again, it's finding that team in that long-term care home who are willing and ready and able to provide that person first resident, first experience, because that's what we say we do. And it's about knowing who is this person. How can I share with you what's important to my mom, to my uncle, to my husband, and then being able to say to you know, whether it's the rec team and the nurse team, I think it's a collaborative team. If you do this and if this is included as part of dad's day, you're going to see a different response from him. That's going to I keep coming back to this that's going to make your day easier, Make your day easier. So again back to really having those authentic conversations.
Speaker 4:And you know, one thing I like to say is tell me about mom, Tell me about mom before mom came here. So you get that information and we're realizing that mom had, you know, obviously a full life. Maybe mom was a homemaker, Maybe mom was an accountant, Maybe mom was a scientist. Who knows what mom was? But the point is, I need to know that information so that I can then, as the care partner now taking some of that care from you, not in a bad way and hopefully in a way to relieve you. I still want to make sure I know your person and that your person's being honored for who they are and what is important to them. And again, we can make some really simple in my world, although it's not inferences. So, for example, maybe mom or dad or cousin was a plumber or worked in construction. I need to know that because they might want to walk around, they might want to lift things, they might want to sort things. So if I can have that information, things, they might want to sort things. So if I can have that information, if I'm good at my job, I'm then going to be able to put in place things to help your loved one have a day that's meaningful and maybe turn that good day into a great day.
Speaker 4:If we know for a fact that you know and I think about my husband in this case he's so routine. He is such a routine individual and I love him for that. He's so organized and routine. His day isn't starting without having that coffee. I don't matter what you want to do with him, Until that coffee is given to him. That's not happening, and I don't give it to him. He makes it himself.
Speaker 4:I'm thinking by fast forward to a long term care experience for him. That's what's going to have to happen first for him. And here's the other thing about him he wakes up really early the 5.30 riser. So what are you going to do with that information, right? He's not staying in bed till seven or eight. That's just never going to happen.
Speaker 4:And if we put some of these restrictions, if you will, on our loved ones, we're setting up for failure right before we even start. So it's knowing who that person is and being able to meet them where they are and, as I said, if he can get his coffee and he's up and ready to roll at six o'clock, which he should be able to, because living in a long term care home is his home, this is his home. It's not home-like, it's home. So how do we create home for somebody who is moving into long-term care? I want that family that you've just described to me, Jana, to know that I'm going to do right by mom, right by dad, right by whoever, because you've given me tools and information that I can now create that picture for them.
Speaker 2:I'm going to all add it one step further back, I guess, in the process and again, having always have lots of ideas when I talk to you, amory, but it's, you know, even might be interesting for even us like I don't know, jana, in the show notes or something but to create a bit of a cheat sheet or something for listeners, audience members, people who are looking to actually help them, ask those questions, to assess everything you just said, before they actually decide on which home to move to, some kind of what you just provided is how to actually do it once you're there and to develop relationships and whatnot. But you could also use all of those same principles that you just talked about in terms of questions to ask when you're going in for the tour or walking around meeting with the staff, submitting your admission form, you know, request, application or whatever.
Speaker 4:Absolutely, and you know to your point who knows the person best. My person best. Well, it's me, it's my person. They know themselves best, but with brain change and dementia, I'm that advocate, I'm that voice now. So, yeah, why not? As you said? Here are, even again, five things. Here are five things that are of utmost importance that I'd like you to know about my person, and I think that's also changing the way we approach talking about dementia. Right, it's, it's. We have to remove that stigma that's there and we have to certainly increase our awareness of how can we, how do we advocate, how do we, how do we educate so that, here you go, here is what is going to be best for my loved one. You don't have to go trying to find it, I'm giving it to you.
Speaker 2:Yeah, no, I love that and I think I I mean, you've given already a few examples, really great examples, actually. So my next question was going to be breaking down, like, how can care partners break down daily activities into smaller tasks and chores and still create that purpose? You've given a lot of really great examples of that, but do you have any others that you come to mind of? Like just a practical example, like the one about your mom and the receipts was perfect, right, it was like continually adapting to meet where she is, and it's okay. If you don't, for sure, let's take a take a look at that.
Speaker 4:So again for me, a couple of things. We are by nature task driven people. We are doers, we have chores and we have tasks and that's really what we are, isn't it?
Speaker 4:like that's what we do. We're doing, we're doing a task right now. So, you know, as a family, journeys with brain change and that person with brain change specifically innately is still an opportunity and a need to do things. I need to do things. You know, this is my home. I need to do things within my home because I always have within my home, because I always have Our job.
Speaker 4:Then is, how do we take everyday chores and break them down into manageable steps, right? Or do we put together, and how do we put together an agenda for that to happen? And you know, there's a whole lot of things that come to mind for me. But the one thing that I think is so important and it just kind of, I think, feeds through everything that we've talked about, and again it comes to that education is the language we use is important, and you know one of the examples. What I mean for that is we need to set up people for success in whatever it is they do. So how do we rephrase and how do we, how do we change the language that we're using? And again, I've said this and I'll say it again, I get it. We are time constrained, we are tired, we are sad. All of those things are happening as we walk side by side with our loved one with dementia. But here's an example of how we could again change just the trajectory of that conversation, which is then related to tasks. So if you said to your loved one, Daphne, could you put the lettuce in the salad and the cucumbers in that bowl Right away?
Speaker 4:For me, the word could says that I might not be able to. You're actually kind of questioning me. Well, the way I feel right now and the fact that I don't seem to have a lot of success success and I'm not seeing anything around me that shows that I'm able to do any of the tasks I used to. When we say the word could, I think no, I don't think I can. Let's change it. Hey, Daphne, I could use your help if you're up to it. So I've kind of asked you for permission. I haven't said could you? And I haven't thrown something at you. I said hey, I could use your help. Are you up to it? Would you mind putting the lettuce and cucumbers in the salad bowl?
Speaker 4:Just changing that word could to would is so important, and I can't tell you how many times I've seen the difference in a person's reaction when we just change the wording. So now, let's back that out a bit, because that certainly is, you know, a task that you're in a person's reaction when we just change the wording. So now let's back that out a bit, because that certainly is a task that you're doing. You've got to get the salad ready and you've got to get the bowl ready and you got to chop the cucumber, but at the same time you've done that. So make time. To save time as you're working on I don't know, let's just say what I'm having for dinner. As you're marinating the pork tenderloin for Friday night's dinner, your loved one is now putting that salad together and you're both in the same spot together, versus and you know this, I've seen this.
Speaker 3:Hey, hey, hey, daphne no.
Speaker 4:Daphne come back. Don't, no, no, no, no, don't go out the back door. No, don't let the dog out, no, right. So again, making make time to save time means we've got to put that energy and that time in, but I really think it's about changing the way we use those words. And then thanks for helping. Wow, you made that really easy for me. I was really at a loss trying to figure out how I was going to make this Isle of Daphne and get the port going.
Speaker 2:Thank you so much. Would you like a tea? Yeah, and like what you said, you did just allude to it, but is the piece of. Would you mind helping you know? Would you mind helping me put the salad, the lettuce, the cucumbers in the bowl? But kind of bonus points if everything is there, because I think you said in one example, like the person looking around, and so if it's a different, if the lettuce is in the fridge and they have to go to the fridge and they have to get the knife or the, but if it's set out, like with the bowl there and you know the least amount of steps for their success, like wherever they are right, like so that it's setting them up for success, I guess in in those tasks.
Speaker 4:Absolutely. And and how many times do we hear and have you heard in your practice? And you know we do it ourselves and oh, I'll take care of it, Don't you worry, I've got it, I'll do it. How does that make us feel, when our self-esteem has now just been, you know, struck again. I already feel lack of success. I might not be able to articulate it to you in my brain change, but I'm certainly not feeling confident and I actually I could do what you just asked me to do, and then I wasn't doing it fast enough or I didn't respond quick enough. You know what? I'll just take it over, I'll do it, You're going to do it anyway. So does it matter if there's not as many cucumbers, because a few fell on the floor? Who cares? Your person that you love has been involved in a meaningful activity that brings them purpose and joy and gives them a feeling of being included.
Speaker 4:And you may have, because you don't even realize it mitigated a responsive reaction that was going to come, because you actually let it play out the way it was and the way it happened.
Speaker 2:I think of a lady from years ago probably could have a million of these stories but when I was working in a long-term care home and she used to love to help with setting up the tables, like in the dining room, and yeah, so the just thinking about adapting, like so, you know, in the beginning she used to, you know, you could give her the little cart with the fork and the knife and the napkins and all the different things, and and then over time we, we switched it so that she was putting the napkins out and then putting, you know, the aprons of like her dexterity. So it was just like, okay, putting the aprons at the place settings instead and like you're going around, because she would get mixed up, say, with the cutlery, right, but yeah, so just that continued adapt and she loved it. It was like her favorite thing yeah, it's interesting.
Speaker 4:I think about it just in terms of my. You know my role as a, as a, as a recreation professional, if you will, and I've always been coordinating things. So for me that's a task. Right, it's a chore, it's a task, it's a. So I think about how would I help a family set up their home for success, and I think that's a really important piece, that, okay, let's take a look.
Speaker 4:This is going to be, for example, you know your cupboard to put things in for your loved one. We're going to organize things in this cupboard that are then going to be able for you to take out quite quickly, simply and seamlessly. You know whether it's, as I said, it's the exact, you know, my mom's receipt box, or maybe it's coupon cutting, or maybe it's folding the tea towels, maybe it's putting the socks and matching the socks, whatever it is. You know because you know your loved one best, but then we've got a place for it. So that, okay, I know.
Speaker 4:You know, maybe around four o'clock my loved one's going to just start to get a little bit anxious, and I can't figure out what that anxious is. I know that it's something to do with the environment. Can't figure it out because they can't tell me ah, I'm going to go pull out one of my activities that I've set up for them. Or, you know, back to one of our earlier questions, if you're receiving some respite which you most definitely need and you've got these activities ready to go for the person who's coming in to be with your loved one, well, here's my let's make a good day great card and here's five or six activities that are chores, that are tasks that are really important, that provide meaning, purpose and a sense of success for the person that I live with. You could do these with them, go for it, right, but again, it's having that organization and being prepared to say I do need help. We are having times during our day where it could be a better day, and here's some ideas of what that could look like.
Speaker 1:This conversation makes me think of something that you've said before, which I love so much, which is the more you do for me, the more you steal from me. So how can care partners strike the right balance between providing that support and also encouraging independence at the same time?
Speaker 4:no-transcript about it. In terms of my mom and my dad living together, it's, I believe, being cognizant to make changes as the person with brain change is changing. So to include them and then to make changes as you see, adaptations that need to be, because it's about ability. So what is the ability? And as the ability changes, we don't just say, okay, well, I guess can't do that anymore. Let's adapt the ability so that there is that opportunity to have a role in my own home, like I think about myself.
Speaker 4:For example, I'm a real this is silly, but I'm a real counter cleaner. I come by it naturally. I think I use it as an opportunity to reduce anxiety, if you want to hear the truth and my kids laugh at me and my husband laughs at me, but I, and my friends too, I need to clean the counter. I'm constantly cleaning it. It's not dirty, it's not, it's the my friends too. I need to clean the counter. I'm constantly cleaning it. It's not dirty, it's not, it's the cleanest counter you're ever going to see, because I'm cleaning it all the time. But it's really important to me to do that and I don't think it's because I think it's dirty. I think it reduces some of the anxiety I might be feeling that day. I actually do a lot of counter cleaning when I'm planning my lectures because it gets my creative juices flowing and going.
Speaker 4:So, again, trying to balance that right, I can just imagine my kids someday going oh mom, please stop that, you're in the way. Or, mom, move the counter's not dirty, let me do that. The minute someone would do that for me, I would just be beside myself. First, you've taken away something that's my autonomy. Secondly, I've just told you that that has some kind of an anxiety releasing component for me. Don't know why and why can't I do it. I thought I was doing it quite well. So to kind of go back, I hope, jana, to your ask it's. Let's zoom out here to see what is it that we are actually needing in that balance Right. So again, the right to risk as an opportunity. So if somebody is still able to use a knife or to use scissors rather than, oh well, mom can't, she can't, she can't cut the cucumber, she's got dementia.
Speaker 3:Let's evaluate that. What does that look like?
Speaker 4:right now. Yes, we're not looking two years down the road or two weeks down the road right now. What does that mean? You know, in scissors, for example, oh no, she couldn't possibly cut the coupon. She has dementia. No, the right to risk, I believe, is part of personhood. We should be able to do that assessment, to say no.
Speaker 4:And there's also really cool, awesome scissors that have nothing to do with and there's no way you're going to cut yourself right. So again, it's about finding that. Balance means that we, as the care partner, have to be willing to make changes ourself to the way we approach and to the way we interact with our loved one. It can't all be on our loved one. They've got enough going on. I know we do too, but it can't all be about them making changes. We have to make changes to the expectation we have within what we're going to do. That day.
Speaker 2:Yeah, even something simple as like oh, I have so many examples coming to mind but if you always had a coffee, you know, and the coffee shop at a certain time of day, but maybe it's about changing that because it shop at a certain time of day, but maybe it's about changing that because it's not the right time of day anymore, or you know, and so that you can keep going for the coffee, but maybe you have to go earlier in the day instead of a two in the afternoon, or all kinds of different things. Maybe, you know, maybe you had supper. You always ate supper at eight o'clock. Well, maybe, maybe, maybe got to do six o'clock, or you know.
Speaker 4:Yeah, it's being prepared to lean into flexibility, and I think that's. You know, we have to almost in a way, get out of our own way sometimes, and my students say I like to use the word zoom out far too much, but I really mean zoom out and look down at a parking lot and parking lot yourself and see, okay, what, how am I contributing you know, certainly, on meaning and well, well intended to the fact that this day isn't balanced Right. So, again, some things we could think about is having cue cards or cards. Are we using simple words? Are we breaking down a task?
Speaker 4:I think about it even for myself, daphne and Jana, you know I always catapult myself forward into, you know, requiring more care, and we'll certainly talk about the statistics that say I certainly might need that down the road, but I'm not a person who reads things.
Speaker 4:I like to see things. So I'm not the person who's going to ever read the instruction manual. As an example, my husband will read every single word and then he'll go back and read it again and then he'll write down, key or underline. I will never open an instruction manual and look at it. I will, however, flip to the back of the instruction manual and look at what the picture looks like. I want to see what that finished picture is and then I can start to put the pieces together. So you know we have a big joke if we're building something, he's reading it. I've already built it and there's a few pieces missing but it works. So again, it's leaning into those strengths and letting go and being prepared and giving yourself permission to let go of the things that don't really need to be changed or really don't matter in the full scheme of this day.
Speaker 2:Yeah, amazing. I could totally listen to you all day and also this conversation has made me think of like 17 reasons why we need to have you come back on the podcast again. So we always have one last question that we we try to end with Anne-Marie and we ask all of our guests this last question, so I'm excited to ask it to you. So what is your hope for the future of people who are affected by dementia?
Speaker 4:Oh, my goodness, I'd like to just back that question out and just change it. That my hope is there's no dementia, but being realistic and being prepared and being open-minded to the fact that is not anywhere in our near future, given the numbers. I first off, you and I know that we need to change the way we think about dementia and I think we've we've kind of touched on that quite you know, briefly, with some examples. How do we think about it needs to change for a variety of reasons, which would take a whole podcast, but you know, you and I know it's an umbrella term that covers more than 50 and probably more being, you know, found and recognized and diagnosed every day of conditions that cause symptoms of dementia. I was just recently looking at a report out of Alzheimer's Canada that's called the Many Faces of Dementia 2024. And this number scared me, which really again does feed into hope, which I will get to that you know the number of people living in Canada and you too know this. This is what you do, your expertise, are you ready for this? It's expected to increase by 187%. This, this is your, this is what you do, your expertise, are you ready for this is expect to increase by 187 percent that wasn't 18 percent, that wasn't 17, that was 187 percent between 2020 and 2050.
Speaker 4:2050 is 25 years away and whenever I see stats and math is never my strong point I always add my age. So, 25 years from now, at 58, I'm still here, but the chances that I have brain change is extremely high. More than 1.7 million Canadians will have and be living with dementia by 2050. You, both of you, obviously, you know this. This is why you're doing what you do and thank God you are. But this means that every family and every group of friends are going to be providing care to more than 440,000 people under the age of 65, if we pull that apart. So now we're looking at early onset dementia. So you and I, we get these numbers because this is what we do every day. We're looking at them.
Speaker 4:So what's my hope? That we have better awareness and advocacy for dementia. Everyone who develops dementia has a different and an evolving personal opportunity within that dementia world. We are all individual personalities and we have individual healthcare needs. When you've met one person with dementia, you've met one person with dementia, right? So how do we capitalize? How do we incorporate that person? First, individual care, and then you start looking at the number we're talking about over a million people for people living with brain change is tailored to the unique needs and the diverse experiences that they are absolutely facing. We haven't even thought about and included in the statistic. And again, math isn't my strong point, but I'm certainly able to dive in the multicultural components of our country and diving deeper into thinking about how does dementia show up? Gender differences, cultural differences, ethnic differences, what does that look like? So for sure I'm a big fan that we need and my hope is for advocacy.
Speaker 4:Challenging the stigma of dementia is just the top of my list. You know people living with dementia and their care. Their care partners need consistent and reliable support. They need to feel that they matter. Their giving and care partnering is a lonely journey, as we know. I certainly did it. My mom and dad it was. You know the sandwich generation and you're trying to manage children and manage older adults that you love and manage a job and try to at least feel like you're providing and contributing to society. I never thought of it as a sandwich generation. I never thought that I was sandwiched. I thought of it as a vice grip. It was absolutely a vice grip. And I think back now to some of those really, really full dark days. I don't know how I did my job. I don't even know what I said to my students. I would love to go back and ask them did I actually make sense.
Speaker 4:Hope for me also means that we support each other more. We lean in and we are. You know, hey, I hear you, I see you. If 1.7 million Canadians in less than 25 years are walking this walk, we have to do that together and we have to reduce that stigma.
Speaker 4:When I first started working right out of university and I probably might have already shared this with you, daphne, because it really stuck with me, so you know, aging myself or putting my number on my age, the late 80s there was three words you didn't use. Just they were. They were the 3D words that were just, you know, taboo Dementia. We didn't talk about dementia. Death, goodness, let's not talk about death, although last last time I checked, it's all going to happen to every single one of us. It's not an if, it's a when. And depression. We aren't talking about these three d's because they don't exist.
Speaker 4:Let's fast forward now to 2024. Here we are on 21st of march, sorry, 2021st of March in 2025. I told you I wasn't a mathematician. These three words are so much a part of our not only our vocabulary, they're a part of our mental wellness. They're a part of our mental health. They're a part of us working together to be better together for those that we love. So I don't know if that's answered my question about hope, but we need to be all in all in in understanding, advocating, supporting each other as we journey with what's going to be changing, and we don't even know what those changes are yet in terms of dementia care and brain change, because it's changing daily.
Speaker 2:Amazing. No, that's a very great answer and I can assure you that you did make sense in those years. Oh good, thank you. Yeah, thank you 1 million times over for being here, and it's just always such a pleasure to talk to you. I feel like we're sitting, not together together, we're in physically, geographical different locations, but it feels like we're just having a coffee with an old friend and I think, janna, at this point you feel the same way. So, yeah, thank you.
Speaker 4:I love what you just said, daphne and that, just to me, is the epitome of what we've just talked about. You're not alone. You are not alone on this journey. You're just having a coffee with a friend. How do, how do we? How do we make that come to life? How do we ignite that in people, in our policymakers, in our health care systems, so that that is what's happening? You are not alone. I do see you. I do we see, hear and are feeling for each other, and we, you know, yeah, we're having a coffee with a friend and we make that part of our, of our journey, as we care for people, as we support people with, with brain change.
Speaker 2:Yeah, I agree. Any last thoughts Jana.
Speaker 1:Just reiterating that it has been so lovely to chat with you again and have a virtual coffee or tea with you this afternoon and, uh, not going to say goodbye, because I think we should just say see you on the next time you join us, because we definitely need to have you back.
Speaker 4:If you'll consider it, I will bring my virtual coffee cup every time you call me. Thank you so much for for including me I. I have absolutely loved my virtual time with both of you today. Thank you.
Speaker 1:Thank you for joining us for this episode of the Redefining Dementia podcast. We hope the insights shared today leave you feeling empowered and connected, no matter where you are on the dementia journey, whether you are living with dementia or you are a care partner, a professional or an advocate. Together, we can continue shifting the conversation.
Speaker 3:This season. We're grateful for the opportunity to bring you new voices and perspectives. As always, we strive to offer practical tips and heartfelt stories that resonate with your experience.
Speaker 2:A huge thank you to our incredible guests who generously share their time and knowledge with us, and to everyone behind the scenes. Our music is written and produced by Scott Holmes, and this podcast was produced by Jana Jones. Be sure to subscribe so you don't miss our upcoming episodes. And, as always, let's keep redefining dementia together.
