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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
Challenging the Narrative: A Conversation with Sonya Barsness on Aging, Dementia and the Power of Engagement
This episode promises an enlightening conversation with Sonya Barsnes, a revisionary gerontologist, advocating for a different perspective on aging and dementia. We'll explore the topics of social isolation, loneliness, and prescribed disengagement, and discuss the importance of meaningful engagement for those living with dementia.
We talk about the concept of 'prescribed disengagement', which illustrates how societal stigma and lack of awareness often lead to a withdrawal from the world post-diagnosis. We argue against this mindset and stress the need for accessible environments, education, and understanding for individuals with dementia. We also explore how life can still offer growth experiences for people with dementia.
Finally, we offer practical solutions for continued engagement in activities that spark joy. We emphasize the need for honest communication between patients and their loved ones and the importance of asking for and accepting help. We address the challenges of social isolation, and how with self-compassion and authenticity, individuals can find joy and purpose in their communities. Join us, as we redefine dementia together, advocating for a less stigmatized and more inclusive space for those affected.
Resources from this episode:
Flipping Stigma Tool Kit
Pathways to Wellbeing with Dementia: Manual of Help, Hope, and Inspiration
Please email Sonya at sonya@sbcgerontology.com so sign up to her newsletter
Sonya's LinkedIn
Sonya's Website
About our Hosts:
https://www.personcentreduniverse.com/about/
Welcome to Redefining Dementia. I'm Ashley King and I'm Daphne Noonan. Thank you for joining us. We are your co-hosts as well as the co-founders of Person Centered Universe, where we help you provide person-centered dementia care at home, at work or in your community.
Speaker 2:Through the Redefining Dementia podcast, we are striving toward a better world for those affected by dementia by sharing resources and insights from experts around the world when consuming resources or media about dementia, the focus is often on the challenges, stigma and fear that may accompany a diagnosis of dementia. This podcast seeks to shift that narrative to focus on and celebrate living well with dementia and what that means for caregivers, through the sharing of stories, resources and helpful life experiences. We hope to provide you with helpful and meaningful takeaways for your journey ahead.
Speaker 1:A special note before we begin. This information shared in this podcast is for educational purposes only. If you or someone you know is experiencing symptoms of dementia, we encourage you to seek medical advice from a qualified healthcare professional. We feel so fortunate to have Sonia Barsnes join us for this episode of Redefining Dementia. Sonia is a revisionary gerontologist with nearly 25 years of professional experience in aging. She views gerontology from an experiential, humanistic, critical, person-centered perspective. As a revisionist gerontologist, sonia believes we need to change the paradigm of aging and dementia.
Speaker 1:Sonia is the founder and owner of Sonia Barsnes Consulting, a multi-dimensional company that provides a variety of products and services to promote a different way of thinking about growing older and growing with dementia. Sonia's passion and vocation is changing the culture of aging so that we can age meaningfully in our communities, wherever we live and with whatever physical and cognitive challenges we face. Her mission is to create better ways of supporting each other as we grow older and grow with dementia. During her time with us, sonia addresses the topic of isolation, loneliness and prescribed disengagement. She speaks about the larger social issue of social disconnection and why it's important to create more connections between people of all ages. We also discuss what it means to grow with dementia and how a person living with dementia can meaningfully engage in community.
Speaker 1:As we navigate a meaningful discussion on how to move from can't to how, sonia also provides listeners with a multitude of practical resources. Please refer to today's show notes for Sonia's full bio and find links to the resources shared in this episode. Welcome, sonia, is so wonderful to have you on the podcast. So the first question that we want to ask and feel free to answer in with whatever half you wear, and probably all hats that you wear how would you like to change the paradigm of aging and dementia as it relates to loneliness and isolation.
Speaker 3:Thank you so much for having me. I'm so excited to be with you both and with the audience, so thank you. This is certainly a topic that's very near and dear to my heart. So there's two ways I sort of like to think about this, probably more than that actually, but I'll stay with the team for now.
Speaker 3:You know, I like to think about this topic of loneliness and isolation with people living with dementia and older adults in terms of social connection. So sometimes we talk about things like in terms of isolation and loneliness, right, I like to think about in social connection, and one of the reasons is because I worry that we have this cultural narrative of older people and people living with dementia that they're just lonely and isolated, you know, and we sort of box them into this space, right, that this is a social connection that happens to those people, and I worry that we sometimes don't take into consideration this bigger context of like a larger social issue of social disconnection, you know, and the reality is that people of all ages are socially connected and this is a social challenge I think we have right now. And so when I think about isolation and loneliness for older adults and for people living with dementia. I think of that. We have to think about this, of a larger context, and so the question that I like to ask is actually how do we create more connections between people of all ages? And you know, clearly there's so many benefits to multi generational, you know, interaction. But I just think in general, it's sort of normalizes this topic, because I do see a lot of things out there in the context of isolation and loneliness, that when we don't think about a larger context, I feel like we have a tendency to create band-aids, you know, for this situation that may not be really addressing the bigger issue. And so what examples are?
Speaker 3:We might make assumptions about why a person is isolated and therefore say, oh, this person wants a buddy, which could be a good solution, but it also could be that that person feels disconnected from society for other reasons and doesn't necessarily want to be in their house right, they want some, but they want to somehow be out in society contributing, you know. So I think we have to think about it in this bigger context and I think we also have to acknowledge that older people and people with dementia may feel isolated or disconnected because our society does not do a good job of helping them feel like they belong. You know. So I think that's a fundamental issue that we really cannot ignore and that we have a tendency to other you know, older people.
Speaker 3:We have a tendency to other people living with dementia and we do suggest that they don't belong. And we do this in many ways. You know, we do this just by the messages that we send through ageism and ableism, and those terms, you know, are very big terms of basically this discrimination of people who, based on their age or based on their abilities or disabilities, and so we sort of say, you know, those people may be belong over here and we may kind of not create spaces for them to belong in society. So of course they feel disconnected and just like very tangible examples are like the lack of accessibility in communities for people to even get around their community. So to me, like that's evidence that we do sometimes send messages that people don't belong and, you know, kind of, in some ways at least, don't facilitate social connection. You know.
Speaker 3:So those are, you know, I think, some issues and the reality too that people living with dementia in particular experience stigma. You know, they experience a feeling that they don't belong, that they shouldn't be socially connected, which, of course, is not right. But I think that just having this diagnosis causes people to feel, you know, somehow disengage from society, and it is very internalized, you know. So I certainly see a lot of people living with dementia self isolate. They don't believe that they can participate in things with, you know, others in the community, even within their own family. As we see it, right is that people sometimes feel like, oh, I don't want to go to that event because I feel embarrassed, you know, and people are talking too fast and there's too much going on. So I think we have to take that all into consideration.
Speaker 1:Thank you, sonia, and I think everything you've just said resonates. You know, I think for us we hear that a lot and I think it came through really profoundly with our colleagues when we were interviewing Jim Mann that not everyone wants to be in social events. Everybody wants family or friends to come to their house. So I guess the question that I would have is from what I understand, you have some, you're doing some work in the space of flipping stigma. Would you be able to speak to that a little bit?
Speaker 3:I learned about this toolkit flipping stigma. I think it was some time last year and I just really fell in love with it because it's a really it's a resource, a website resource that guides different audiences through what it means to have stigma when you're living with dementia, and I think it's really important for people living with dementia to understand what stigma means and how it affects them, and so I think it resonates that you know people experience this. It's for professionals to understand you know that people living with dementia experience stigma and for family members and friends of people living with dementia to understand what does this mean and what does it look like in reality and how are people living with dementia experiencing this. So it's a wonderful toolkit and so, yeah, we there's some projects I'm involved with and which we are using it in different ways, and I certainly share it as much as possible in my work working with people with dementia and working with those who support people living with dementia so that they can understand this.
Speaker 3:Really, I think, foundational idea that as soon as you have a diagnosis with dementia, you can start treating you differently, and that you know to understand that from the perspective of the person living with dementia and what that feels like and looks like and what it's like for people close to you to suddenly think that you can't do things. You know that. You know you should be protected at all costs. You know that. You know people sort of forget about these many elements of you, like I used to all the state of people living with dementia. Keep in mind that cognition is one part of a person right, and there's many parts of a person and we all vary in, you know, what we look like in all these different parts of who we are, but some, I think with the diagnosis of dementia, we sometimes forget that.
Speaker 3:So one of the reasons why I love that toolkit.
Speaker 2:Thank you. So I I we will definitely share that on for sure. The episode like this episode I'm probably on the episode with Jim Mann as well on the landing page, but we'll probably take a look at it ourselves and because it sounds like it's just a wonderful project. So I have a question. I guess I have a. I think you've already sort of unpacked this one term, but I think I'm going to ask a question about um, get you to explain something, and then I have a follow up question. So can you just describe for our audience what the term prescribed disengagement means?
Speaker 3:Yeah, so I I I will describe, I will explain it by giving credit to Kate Swaffer, who I think really came up with this term. Kate Swaffer is a person living with dementia and this idea that she put out there was that as soon as someone gets a diagnosis of dementia, they're almost prescribed or told to disengage from the world, you know. So she talks about how, when she was diagnosed that the messages she was getting from both the medical community as well as others was sort of to retreat. It was very focused on sort of the things that you can't do anymore, and so she felt like, rather than getting the message of, okay, you have this condition, these are things that you can do to move forward, it was more of a message of things are done, you know, life is over, and she talks about that that she feels like the message that she had gotten was basically like put your things in order, and I have heard that from many people living with dementia, and so that's my interpretation, and or you know, of her pointing this term prescribed disengagement.
Speaker 3:But I do see it in many different ways and it's on different levels. Like I see it in many ways, I don't think it's even intended to be harmful, but I think people are trying to figure out well, how do I support this person living with dementia? So they might say, like you know, hey, you know I don't think you should do that anymore because this could be a challenge to your safety, but that's a version of it. Right of telling someone that, now that you have this diagnosis, you should cut these things out of your life. And I have thoughts on that which you know. Certainly we can share of this idea of how we can move from can't to how, and how we can adapt some of the things that we do so you can still be a part of the things that are important to you.
Speaker 2:Yes, well that's, and there's so many examples as well that we've encountered clients that just align with that. So just such a it's a really wonderful term and I think you know what, on the broader picture of you know it's prescribed by others, by the medical community, by one, but then on the broader scale is because there's just so much general stigma out there and maybe a lack of awareness around dementia and like what it actually means to have, you know, have a diagnosis, and the disease trajectory is that we are like, I think people that we've been, we've spoken to, who have had a diagnosis of dementia, often also do that to themselves as well.
Speaker 3:right, because it's the influence on our like social constructs, kind of around by osmosis, and I think that's such a great point, because I think that is what happens, is it's like it's just told by others, but then it becomes so internalized and people really believe it. And you made me think of an example.
Speaker 3:There was a gentleman I was working with. He had just been diagnosed with dementia and he was a surfer and I remember one of the first times I met with him he said he was so upset and he said well, I can't surf anymore. And I said well, why? And he said well, I have dementia, I can't do that. And he's like I'm hearing from all these people that I just it's dangerous and I can't do these things. And we talked about it and he started to come up with ways that he could still possibly surf in a way that would make himself feel comfortable, make his wife feel comfortable, that he really right away went to that place, like you're saying, daphne, that he just kind of said I have to give these things up. And there was like a version of things that could happen very reasonably, where he still could go out and surf, and that was incredibly important to him and someone.
Speaker 2:I guess the irony of that too is like someone who's a surfer is probably pretty comfortable with risk. So being able to live, choose to live life with a certain element of risk or not, right Like? As opposed to being bubble wrapped and changing who you are Anyway, so true.
Speaker 1:And I have another question, but I just want to add as well we have a. We have a colleague another gym, a different gym who often says I'm relating it to sometimes how we treat the culture around long-term care and you walk through what we say is like the vestibule and you become a bingo loving person who goes to bed at eight o'clock you know, in the in the evening.
Speaker 1:And so how do we? Again, it's just because you're going into long-term care, just because you've been diagnosed, doesn't mean that the trajectory will one way and only one way. So how would you like to see communities, both starting to you know, shift that paradigm by engaging with people affected by dementia?
Speaker 3:Yeah. So this is such a great question because I do see it at that level. You know that this is, this is a community level effort, and so a couple of different things I've thought about is when I do think communities need to actively seek out information about dementia and more than just the medical explanation, you know. So I think communities, you know, need to consider, okay, who lives in our community, you know, and you know how do we support these people living in our community? So that might mean starting with education, so understanding what dementia means, but understanding also from the perspective of people living with dementia, so having people in one's community talk about what it's like to live with dementia and to explain their challenges. And I think that is a very real level of both the personal experience of living with dementia. But also like how do you navigate a community when you're living with dementia? You know. So you know it's difficult for me to get around. It's difficult. You know I worry about getting lost in this community and I'm not really sure you know how to handle that. So I think it's that's one part of it.
Speaker 3:I think it is looking at communities and thinking about how can these be accessible for all people, you know, for all people of different abilities, and I think, unfortunately, we sometimes have a tendency again, like based on what you were saying, actually with this like kind of long term care paradigm of that, the answer is just that I put people away.
Speaker 3:But how do we expand our thinking of that of creating communities that support people you know to be able to move around, live their life, do their thing and I know my friend, the colleague Amy Keoda, works on this space of trying to figure out how do you make dementia inclusive communities where the community itself really supports a person with dementia to live in the way that's important to them. So I do think communities have to think about these things. So it's almost like at a planning, like a city planning level, right, that people need to be thoughtful. I think dementia friends has done a really good job of this of creating kind of a normalization of the experience of dementia and that, rather than othering people to mention, thinking about them is so different than us that we need to think of each other as being a part of community together and how do we support each other, and so I really love that.
Speaker 3:I think it goes a little bit back to what we were beginning to say of this idea that different ages, different generations need to come together to support each other. So I think in some cases we have a tendency to separate people by age, by condition, and if we can think differently about this, by thinking of people living with dementia and older adults also as assets in our community, that it's just so much opportunity out there to be able to think about, how do we utilize the gifts of people living with dementia in our community? How do people living with dementia in our community want to interact with their community? I just I think it's such a great thought to consider how we can work together to address some of the challenges that we're all having at a social level, which is disconnection. But also it just feels like we don't know each other sometimes in our communities and by not knowing each other we don't really know our needs.
Speaker 3:I mean, I'm thinking of like COVID was probably a great example of this right. We learned sometimes that we didn't always know the needs of our neighbors and the people in our community and people came together to support each other. So how do we look at things like that and just really trying to truly build a community where it is inclusive, where people honor each other and they don't see certain segments of a community as liabilities. So I mean I would love to be walking around my neighborhood and I see a person living with dementia hanging out in the coffee shop right, and the kids in the community know how to interact with a person living with dementia. They understand that I have to maybe talk slower or the types of questions that might be helpful to a conversation. So those are the things that I think about.
Speaker 2:Yeah, those are all so many things. So many different thoughts are going through my mind right now, but in particular, I guess, when you think about work that is done in other areas. So we've done a little bit of work in working with business, like a specific business community here in Atlanta, canada, around dementia-friendly businesses and whatnot, and what we've started to say, as we realize through that work, is that dementia-inclusive spaces or dementia-inclusive communities or businesses or whatnot are actually inclusive for everyone. Absolutely, right, absolutely. So it's a big topic. I'm going to switch gears just for a sec. I'm going to ask you can you expand for us on what it means to grow?
Speaker 3:with dementia, so I love using this term. So, as much as possible, when I'm talking about a person living with dementia or an older adult, I like to say a person growing older or a person growing with dementia. And language is important, as we know, and it's something I kind of started saying in the recent years, and I think one of the reasons why I like saying that is because to me, when we use the term grow, it suggests like a moving forward and a link through time and we're always growing and changing, each one of us. So to me it's an attempt to both show that people with dementia are continuing to grow and change and it's also an attempt to show that we all do this. So it's kind of like a normalizing these experiences that you could think about, not to get all academically, but from a life course perspective.
Speaker 3:We talk about gains and losses throughout life.
Speaker 3:I mean this is the way life is, I mean no matter what age you are, no matter what conditions you have, and even in positive psychology we do the same thing.
Speaker 3:We talk about the assets people have and we talk about strengths, but we also acknowledge that there are good and bad experiences throughout life and we grow through those experiences, both good and bad experiences, and I've had lots of people living with dementia talk to me about the gains that they've experienced through living with dementia and what it teaches them and how it's impacted in a positive way their relationship. So I think this term growing is important because it reflects all of that and I think I just like the idea of thinking about each of us being dynamic and ever evolving, regardless of what conditions we have. So that's a part of it and I also think because the narrative that we have at dementia is so deficit based and, like we were saying before, it assumes that people at dementia are done with their lives. So if we talk about people growing, I think that reminds us that people have a lot of living to do, they're continuing to live, and it combats this idea that people with dementia are done.
Speaker 3:And that's such a detrimental way of thinking about living with dementia, I think, for both people with dementia and for those around them.
Speaker 3:So I think it's helpful to reframe this idea of dementia as thinking about it as a growth experience.
Speaker 3:And also sometimes I see a lot with people living with dementia is we just focus on their past because we say, well, they can't be anything else anymore, so we just talk about who they were. But that's such a missed opportunity not to think about who somebody is now and who they want to be. And certainly it goes back to the messages we send people living with dementia that we hear things that say people with dementia are gone, this person's no longer here. And I think when we talk about growing with dementia, it again is a way of us saying, no, this person is definitely still here and they're going to continue to change, like every one of us does, but this person is still here. And so maybe it's a way of us honoring that person as a whole person, not just deficit based, but really understanding that a person with dementia has so much to give us and that we really have to just remind ourselves that we sometimes have to, I think, enable the opportunities for us to see the gifts that people with dementia have.
Speaker 1:Thank you for that, because it's so true. I think it aligns well that setting up a community and us as individuals, whether we're directly connected with someone living with dementia or not, having that more acute awareness of how we can be supportive is so key. And then I think on the other side, like just because someone's diagnosed with dementia doesn't mean that they're meaningful contributions, whether it be to society, to their newfound diagnosis, it doesn't mean that they can't continue to contribute and support others and their own communities. So what are some practical ways that you've experienced and with your expertise, that individuals who are affected by dementia could meaningfully engage with their community?
Speaker 3:Yeah. So I think what I would love to see is if there would be more opportunities like formalized opportunities for us to engage people living with dementia in volunteerism, for example, in civic kind of engagement, and I think this again goes back to. The community has to learn how to create these opportunities and make sure that they're being supportive and inclusive of people living with dementia.
Speaker 3:And I think that a person living with dementia also has a role in this.
Speaker 3:And first it starts with again kind of you know, come, yeah, in your as a person with dementia, recognizing that you have gifts, that you have things to offer. So really trying to get rid of that, thinking that I have nothing to offer anymore, I'm disengaged. And then when you're going out there in the community and offering your skills, your time, your assets, I think it's also recognizing that you may have to bring people along as a person living with dementia right. So you may have to express your needs as a person living with dementia in terms of how you would like people to communicate. So if you have communication challenges and, for example, it's difficult for you to be talking with someone if there's lots of things going on around you, you may have to be the person that is actually educating someone about that, you know, and saying like this is what I need. I think a person with dementia may have to provide education to a community about how this is affecting them and what the experience is like and the spelling myths, and have honest conversations about that. I think also, a person living with dementia, you know, may need to consider ways in which they do need to accept help, you know, in order to engage with a community. So, you know, if this is something, if I'm wanting to volunteer in a particular organization, I might need somebody to help me with certain things in order to be able to volunteer. So it doesn't mean that I can't volunteer with, you know, children in a school or whatever it may be, or at the animal shelter, but I may need some, you know, support from other people to be able to do that, whether it's transportation, getting there or, you know, maybe I need someone to, you know, remind me of things that I need to do. So I do think that, you know, in some ways it's it everyone's kind of sharing this responsibility, you know, for a person living with dementia to continue to be engaged in the community and that also includes the person living with dementia in terms of them, I guess, practicing how that they can communicate to people about what they need and what they would like to do and what they don't want to do, and things that they may have challenges with doing. So I think all of those are kind of important pieces.
Speaker 3:I think, maybe very like, practically speaking, it's also as a person living with dementia thinking about what are the things that you like to do, what is it that you know gives you joy in starting from that place, instead of maybe like, oh, what is it? Can I do with my limitations? You know, I would say starting with, rather than like this deficit, thinking starting with actually what you would like to do and then working from there. So I have this idea, you know, this concept of moving from a can't to how, and I think, rather than again saying like I can't surf anymore, like we said, you know, thinking about all these different ways that I could surf, so I could find a surfing buddy, I can make sure that somebody is available if I need help. You know, while I'm not there surfing, I'm not doing it by myself.
Speaker 3:I mean, similarly, if you are a person that, for example, likes to walk, you know in your community that it's not so much that maybe you can't walk anymore.
Speaker 3:I mean, you may be concerned about losing your way and people around you may be concerned about you losing your way, but there's ways in which that you can address that.
Speaker 3:Maybe you do use a GPS system on your phone, maybe you have a walking buddy, maybe you walk with a dog, you know. So it's this idea of really thinking about how do you want to engage in your community and then how can you make it happen in a way that meets your needs and, you know, I think, addresses concerns that people might have, because I do think that we have to consider that. You know, if you're a person living with dementia, is it, you know, to share, to learn to share perspectives, right? So my perspective would be that I am, I'm really interested in walking around my neighborhood and that's what I want to do, and I'm not going to stop that, and maybe your spouse is like well, that's really concerning to me, you know. So it's kind of a conversation, you know, that needs to happen out of trust and mutual respect, and we can't be afraid to have those conversations, even though they may be very difficult.
Speaker 2:So many practical thoughts in the area it really does.
Speaker 2:And again, I'm thinking of so many different stories of that.
Speaker 2:And you know, that last example that you gave me made me think of I had two family members years ago that one of the individuals so my uncle was had a diagnosis of dementia and part of what was happening they were living in a large urban area and he loved to.
Speaker 2:He always got up early and walked, you know, or walked around the neighborhood and it was, you know, at that stage it was kind of a bit of a negotiation or they had to put some things in place where he would be queued to understand, let's say, if he got up at three in the morning, you know, to kind of realize that it was, it was a little bit too early to go for the walk and that they had, you know, made an agreement of like, okay, let's not go until 530 or six or something like, and just like. So then that conversation was the starting point. And you know, different days are harder than others maybe to hold those types of conversations, but at least you know if there are some some a little bit of structure around how to do those things, I guess can. Can be a little, make that journey a little easier.
Speaker 3:and yeah, I totally agree, daphne, and because the paradigm is the way it is and we think of things as deficits, we don't sometimes have these conversations because we don't even consider that people living with dementia can do these things right. So, as a result, we don't have great guidance to people about how to have these conversations. You know how to approach things, how to adapt, you know, to activities in a way that maybe is, you know, helping everyone and making everyone happy, and so I think it's a big area for us really to think about, you know, is what can, and saying that we, as like professionals in this field, you know, as well as family members, you know, how do we, how do we think about these things differently so that we can have these conversations that we can, you know, help people to continue to legalize that they want, you know, and focusing less on, like, managing people right, and you know, and focusing more on enabling people to live life well. And you know, as you're saying, that too, I was thinking. I know, you know it's so challenging for any of us to ask for help and accept help. I mean that's, I think, culturally. I think that's a challenge for us, but you know, but I also think it's just as humans, you know.
Speaker 3:But one thing I offer to people is, you know, consider this is that when you are asking someone for help, you are giving that person an opportunity for them to be human, you know. So you are actually helping them in some ways. You know, often people want to give help. They just don't know how. So if you're specific about what you need, it's very likely that you know someone may help you. And if they don't and if they don't they can't like, they'll also tell you that, and I think it's a mutual trust, like I trust that I like to say like to people living with dementia and their friends and family. You think of it as like a trust dance, you know that.
Speaker 3:I'm a person living with dementia and I trust you know that if I ask you for help and it's not something you can do, you're going to tell me as a family member or friend. I trust that a person with dementia is going to ask me for help if they need it, you know so it's another way of thinking about all of this is because this, I think a lot of things that we talking about are about relationship and you know, about building stronger relationships together to support each other in an equal way.
Speaker 2:So, on that note, I'm actually going to ask another question more about, I guess, advice from your experience and your wealth of knowledge on all of these amazing, you know very, very poignant topics. But do you have any kind of key pieces of advice? You've given lots already, practical things, but for someone who is, say, maybe has had a diagnosis of dementia, is living with dementia or and or their care partner, someone that might be experiencing kind of a feeling of isolation, deep isolation, or loneliness, or prescribed disengagement, yeah, I think.
Speaker 3:I think I would first just say that the deficits that you are told that you have, or that the person that you're supporting is told they have, does not mean that you are worthless. So just starting from that and really letting that sink in, that you can give the people around you the opportunity to see you. And I think there are so many amazing people living with dementia that are advocates, not just, I mean in a policy going to you know, you know the government and lobbying for things, but in an everyday way of showing people what it's really like to live with dementia, like the reality of it, and dispelling myths. So I kind of say that first is like this could this is a role that you can have as a person living with dementia or supporting a person living with dementia to have is to help that person be seen in society and community. I think a lot of times the roadblocks are sometimes emotional. People are feeling like no one wants to know me. I'm, you know what do I have to give? I really feel like if we can kind of change that thinking, I think that's a good place to start.
Speaker 3:I think, again, it's kind of like thinking about what's important to you as a person living with dementia? What do you like to do? I mean, what's what kind of gives you joy? And I realize this question for many of us is difficult, regardless of what age we are, regardless of what condition that we may be experiencing, because, you know, maybe it's something that we don't I always think about and maybe for many of us we don't have the luxury of thinking about what do I like to do, what gives me joy? But to think about that? So maybe I love animals. I might seek out opportunities to engage with animals, and it doesn't even have to be in a volunteerism way. I know, personally I like to go to the dog park and I like to just watch the dogs run around and that gives me a lot of pleasure. And sometimes you end up talking to the people there and you talk about your respective dogs. So I think it's kind of starting with what's important to you and if you were to choose to engage in some other volunteer formal way, like I said before, it's kind of maybe helping those people along the way of understanding what your needs are as a person living with dementia, so that you can be your best self If you are a person living with dementia that doesn't necessarily want to be around tons of people or doesn't really want these deep relationships, that's fine too.
Speaker 3:You should be you If you would like to somehow be more engaged in your community, but not necessarily in a very traditionally social way. I think, to consider that, yeah, sometimes just walking around your neighborhood, being out there, is meaningful. I mean, you don't necessarily always have to be engaging with other people. It could just simply be that you're a part of this community in which you live in whatever way that makes sense to you. And another, I guess I would say, observation I have made is this idea of purpose, which is another way that I like to talk about this topic a social isolation and loneliness which is, I think, for many people I think people in general, many of us do not always want to be felt.
Speaker 3:We don't want to be feeling like we're always the receiver of help, of support. So we have, as human beings, we have a deep, fundamental need for purpose, meaning that we are providing something to society, that is something that's bigger than us. And so I think, in terms of someone living with dementia, to think about what gives you purpose, and that is very different from many different people, and so for some people it might mean that what I choose to do in terms of engaging is somehow contributing to others. I know I have family members and worked with many people with dementia who, for them, going to a center where people kind of play cards is just not their jam. That's not what they want to do. But if you say, well, this is something that we need you to do, maybe you can help us with this project or be a part of this event, a person might be more likely.
Speaker 3:And so I say that for people living with dementia that it's totally reasonable if you want to find opportunities for you to feel like you do belong in this community, that should be supporting you to seek out these opportunities for purpose, to show people that you have value and you can contribute, and that might be your way of engaging with people as offering something to other people and lots of people living with dementia I think I shouldn't say lots because it's not always available but I've worked with a lot of people living with dementia who find a lot of purpose just with interacting with other people living with dementia and they find a lot of purpose in helping each other through this journey, and so there's some great organizations, like in the US.
Speaker 3:We have an organization called the National Council of Dementia Mines and they bring together people living with dementia to socialize and share and educate other people. And we have Dementia Action Alliance, also in the US, which is another organization that brings people living with dementia together. So perhaps connect with people that you can mutually help each other out it made me think of.
Speaker 2:We had, as we've mentioned, we've had an open-ended conversation with our dear colleague, jim Mann from British Columbia, and he was talking about in terms of also just allowing giving oneself grace, I guess for lack of it. But is that some days will be harder than other, than just being able to say, if today is not a great day, like so, some days you may not feel like engaging or being, and it's again, it's no different than any of us, right? We all have good days and bad days and just being willing to take those as they come. I guess this was kind of a message and forgiving oneself, or not even forgiving, but giving yourself grace.
Speaker 3:I think it's such a great point and that is the reality, like you said, for any one of us. So we have to be kind ourselves. I mean, there is like an element of self-compassion to this right, and it made me think when you're saying that. And we should never feel like, oh, as a person of language, I should be this person, right, so I should be this like social butterfly that's out there, volunteering every day to be who you are and decide for yourself what it is that is important to you and what you want to do and there's no right or wrong way.
Speaker 3:You don't have to be anything that society is going to tell you to be. Just be yourself. But don't think that, just because you have this diagnosis, that you don't have a place in this world, because that is not true.
Speaker 1:And so I think this segues us very nicely into our final question what is your hope for the future for people affected by dementia?
Speaker 3:We have so many dreams. I have great hopes for the future for people living with dementia, and I'll first just say that I think one of the most profound changes we've had in dementia and progress has been the voices of people living with dementia sharing their experiences and being willing to, I think, challenge the field about what it actually means to live with dementia. So I think what that has done is it has helped us understand that, although different types of dementia or medical diagnoses, the experience of living with dementia is not a medical experience. It's a life experience, and so one of the dreams I have is that, you know, we will continue to see dementia as more than medical. We'll continue to see people living with dementia as more than their diagnosis, and I think that this happens in very real ways right now, in which we have a tendency to see everything about a person living with dementia in the medical space. So everything this person needs should be in a medical kind of system, and my dream would be that we take that out of the medical system and we recognize that there's many different ways in which we can support people living with dementia that are not medical. You know, sometimes when I I'm definitely in that space.
Speaker 3:I'm not a medical person and I live in a not medical space, but it's very interesting because when I talk about supporting people living with dementia, there's lots of assumptions that what I do is medical and that it should be medical and it should be like in a health system or a doctor's office. And I have even been so boldest to say that I feel like we should consider how much we can take out of the medical office in terms of the experience living with dementia. You know, there's some things that obviously need to happen in a medical space, but the reality is that most of the support a person living with dementia gets is not from their medical doctor, you know, or at least the potential is not, you know. It's from the community, it's from other organizations. So that, to me, is one of the biggest hopes I have is that we reconceptualize what it means to support a living with dementia as definitely more than medical and very multi-dimensional, and so maybe, looking at it from a broader well-being perspective that we're thinking about. You know all the different elements that are important to each one of us, and how do we support a person living with dementia. So wouldn't it be amazing, you know if a person gets these diagnoses and they're sort of as like a plan, a living plan, you know. That's kind of like. These are all the different things that are important, you know.
Speaker 3:And so what are the supports out there, what are the adaptations? You know, how can you move forward as a person living with dementia to be able to live your life? And increasingly there are some great resources out there which I should mention too is so dementia actionally. And space in the US has a great new resource called Pathways to Well-Being with Dementia and it's a kind of a guide. It's called a manual of help, hope and inspiration. So it sort of is like this multi-dimensional. And the University of Nevada, reno, has also a new guide and I don't recall the name of it, but it's sort of like a quote unquote a disease management approach to dementia, where it's this idea of holistically looking at how you can move forward with a diagnosis of dementia by kind of taking care of the whole person. So to me, that is my hope. My biggest hope is that we can really see this as being bigger than just medical.
Speaker 2:That is our shared dream. Yeah, I would say.
Speaker 1:you know we're so closely aligned with that, it's so important to see it in so many other spaces. You know the social prescribing I'm hearing that term a lot lately and it's so important.
Speaker 3:It is so important and I think you know there's some really cool stuff going out there, as I'm sure you all are aware of too is. You know people are trying different models, you know, of approaching dementia in health systems, like palliative models, and you know these different types of, I think, really important ways of thinking about dementia and I'm so appreciative of them. And I would just add to that that all of those things do not still have to happen in a health system. You know they can happen in the community at large, and that's the challenge I guess I have, for people is thinking about you know, like what are the other supports that we can design for people living with dementia in the community?
Speaker 3:So, whatever type of entity you may be out there in the world, you know, like thinking about that, as a person living with dementia, you know how would you like your community to be designed to support you. You know what is it out there that you would like to have. I think these are the conversations that we need to be having. As a person, as a family member, you know what's helpful, and I think we know some of the basic answers to these questions, I mean, but I think there's a lot that we don't know because we are really confined to this idea of thinking of dementia as just medical, so we tend to just think of medical answers, you know, when we ask this question, where maybe we could think more broadly about living, and what is it that would support a person with dementia to live, you know, not just to manage their condition.
Speaker 2:So I was just going to actually say, not to put you on the spot, but we're going to share all of your, of course, your information with our listeners. When you know, with the page for the podcast, but do you have any, you know, upcoming like really neat, any cool initiatives that you for your community? Yeah?
Speaker 3:thanks for asking. I actually this is one of the spaces in which I would love to hear from some of your listeners is so I'm creating what they call a digital health app, which, you know, this is the language that is out there, but basically it's like a website or an application that a person could go to, and this is what I'm when I'm developing is something that is for people living with dementia and those who care for them, or M or cognitive impairment, or maybe you don't have a diagnosis, but someone that you know is concerned about their cognitive challenges for them to go to this and to learn how to navigate these cognitive changes in a way that's hopeful, that is based on strengths your strengths as a person living with dementia and uses like, like positive psychology ideas to live with these conditions. You know so there's so many ways that we haven't yet thought about dementia in terms of thinking about resilience and strength and assets, and I would. I'm creating something that people could use to be able to move forward with this in a very practical way. So some of the things that, like, we talked about today, but other tools and ways of connecting with each other.
Speaker 3:So I'm working on that and what I would love is to have people living with dementia give me feedback and, if I can kind of pick their brains. I would love that is to be able to, you know, have their voices, and I'm sort of pulling together like an advisory group of people living with dementia. That not something that we would meet all the time or would be very, you know, I hopefully not a burden on anyone's time, but just so I could reach out to you occasionally and kind of ask them questions and guide me in developing this. So that's something that's happening but I'm really excited about excited about that too.
Speaker 2:Yeah to have you back on the podcast when it's ready to go. Tell everybody about it. Absolutely, I'd love that.
Speaker 1:So we just want to say thank you again. It was incredible and we're so lucky to have had you join us today and and you've brought so much insight, so much experience and so much expertise to the podcast.
Speaker 3:But thank you, oh gosh thank you, guys, and thank you for inviting me, and this has been such an amazing opportunity and I am just so in awe of the work that you do, so I'm just so grateful that an organization like you and individuals like you exist. So thank you for that.
Speaker 2:After reviewing this episode with Sonya Barsness, the word enthusiasm comes immediately to mind. Just pure, genuine enthusiasm for creating a better lived experience for individuals who are impacted by dementia. Sonya is simply a lovely individual and she has focused her passion on positive advocacy in the dementia space. We talked about many large topics in society as it relates to advocacy for and by individuals who are walking a journey with dementia. These included how to combat social isolation. In this period of the show, sonya shared her perspective, which was quite positive, a positive perspective of framing the question instead, as how do we create more social connections between people of all ages? And then we also talked about the idea of prescribed disengagement how often individuals with dementia internalize the stigma from outside sources, such as the medical community, workplaces and social networks, etc. And then they begin to retreat after a diagnosis. Sonya provided encouragement for someone who may be experiencing this to instead begin to think of ways of how one might move from can't to how, and that means really looking at how someone with dementia can continue to do the things that are most meaningful to them, that bring them purpose, even if it may mean that we have to make adjustments along the way. She gave many suggestions for individuals who are impacted by dementia to begin to advocate for themselves or for a loved one. She touched on the importance of communicating, asking for help, focusing on relationship building and starting from a place of where do you find your purpose, as a jumping off point for an individual living with dementia to begin to engage in their community. Sonya shared a few examples of very practical tools and resources that could help someone living with dementia and their care partners to advocate and live well. We will share the links to these resources in our show notes for this episode. Specifically, we'd like to share the links to a couple of different things she referenced, so the Flipping Stigma Toolkit, which was created through research funded in Canada by the Canadian Institutes of Health Research, and then we will share the links to the pathways to well-being with dementia toolkit, which was developed by the Dementia Action Alliance in the United States. Additionally, sonya has asked that we share her email sonia at sbcjarentologycom and to let our listeners know that they can email her if interested in signing up for her newsletter for and by people living with dementia. We'll also share her email in the show notes as well.
Speaker 2:Considering the range of broad topics that we discussed in this episode. We want to acknowledge that for some of our listeners, the idea of advocacy and living well with dementia can feel quite overwhelming to even think about. We understand that for some it can be difficult some days to simply keep putting one foot in front of the other, let alone consider where to start in terms of advocating for yourself or for a loved one. We hope that some of the strategies and tools shared by Sonya can be helpful to begin to understand what advocacy and living well with dementia means to you uniquely.
Speaker 2:It also occurred to me that for individuals who are navigating a diagnosis of dementia for themselves or helping a close friend or family member, this episode would be a wonderful option to share with people in your life as a first step to help to begin building a positive support system and advocating for a better lived experience along the journey. Hearing Sonya's positive perspective and enthusiasm might just be what is needed to ignite a passion for someone in your life to help and tangible ways that they can begin to do so If you need a bit of encouragement to take that first step. I would love to conclude with a quote that Sonya shared when we discussed the importance of asking for help. She said, when we ask people for help, we are actually allowing the person we are asking for the opportunity to be human. We want to say thank you so much to Sonya for spending a bit of time with us. We truly enjoyed entering into conversation with her and learning about all the wonderful work she's doing.
Speaker 1:Thank you for listening to this episode of the Redefining Dementia Podcast. We hope that you have found this information helpful and inspiring. No matter where you find yourself in the dementia journey Whether you are a person living with dementia, a healthcare professional, family and friend care provider, or an ally we aspire to shift the narrative and redefine what dementia means to you.
Speaker 2:This podcast was made possible by the New Horizons for Seniors program. Our music is written and produced by Scott Holmes, the podcast was produced by Janna Jones, and we'd like to offer a very special thanks to our affiliates at Lifelong Inspiration and, of course, to our amazingly talented and knowledgeable guests who gave of their time to share their expertise with us.
