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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
Redefining Dementia: The Power of Narrative Care and Storytelling
Have you ever stopped to wonder about the power of the stories we tell ourselves? What if there was a way to redefine the narrative around dementia, not as a decline, but as a journey of discovery? That's what we're exploring today with our distinguished guest, Dr. Bill Randall, a retired professor of gerontology, author, and passionate advocate for narrative care. Together, we delve deep into the profound impact of stories on our identity, health, relationships, and ultimately, our wisdom as we age.
There's much more to narrative care than meets the eye. It's not just about reminiscing; it's about keeping an individual's story alive, even when memory starts to fade. We'll discuss the role of narrative care in medical treatment, often serving as an alternative to medication, and the narrative challenges that might surface in later life. We also talk about tangible steps to support someone in care and how narrative can build resilience not only for individuals living with dementia but also for those caring for them.
We'll also be exploring how narrative care can create more meaningful interactions with people living with dementia. We discuss the importance of creating a sense of understanding and comfort, focusing on the person, not their condition. So, join us as we redefine dementia through the power of stories and narratives. This is not just a conversation about dementia, but about life, memory, and the stories that make us who we are.
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. 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.
Speaker 2: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.
Speaker 3:We are so pleased to welcome our dear friend, dr Bill Randall, to the Redefining Dementia podcast. Bill is a recently retired professor of gerontology at St Thomas University in Fredericton, new Brunswick, canada. He has over 60 publications to his credit on topics related to narrative reminiscence and aging and has written articles for journals in the fields of gerontology, social work, education, healthcare and psychology. He's also the author, co-author or co-editor of 10 books. Bill is committed to furthering awareness of the importance of narrative care in a wide range of settings, from hospice to hospital, special care home to nursing home, and churches to communities.
Speaker 3:In today's episode, we focus on the multifaceted topic of narrative care and why this approach is at the core of person-centered caregiving. Bill shares how stories impact our identity, relationships, health and wisdom throughout the continuum of life and how one's story is not over after the diagnosis of dementia. Bill also shares practical ways to implement narrative in our daily lives and discusses how story can be a positive intervention during the dementia journey. Settle in with us as we reimagine the story of aging and transform it from a narrative of decline to a narrative of discovery. For links to resources or ideas mentioned in this episode and for Bill's full bio and contact details. Please refer to our show notes.
Speaker 2:Welcome Bill.
Speaker 4:Thank you so.
Speaker 2:I have you here.
Speaker 4:Nice to be here.
Speaker 2:Thank you so much. I think we could probably do I don't know how many episodes of our podcast with you, but we're really excited to be reconnecting with you, and especially on the topic of kind of the theme of narrative and narrative care in relation to individuals who are walking some type of journey with dementia, and so maybe I'll just kind of kick it off with the question of we know this about you, but maybe you could just give us a little bit of a background for our listeners in terms of how you became interested in the field of narrative gerontology, yeah, and actually more specifically, if you feel like it, relating to how does that topic relate to the experience of a person who is walking a journey with dementia?
Speaker 4:Well, let me start with that, daphne, and that is that. You know I've been an academic for the last 25 or so years. Before that I was a parish minister, so I did have some experience with people who were walking the dementia journey. But I wanted to make a disclaimer straight away for us today, and that is that you know neither one of my parents my dad lived to 98. My mother is still living at 101. Neither of them, thank goodness, have been dealing with dementia some forgetfulness and so, but not dementia per se, and I'm not a frontline practitioner like you and others in your circle are. So so my first hand experience with Alzheimer's disease and other forms of dementia is a is, admittedly, rather limited. That said, I think that the narrative perspective on aging, or narrative gerontology, does have some things to say that can be of use and perhaps have encouragement to people living with dementia or caring for them. Living with dementia or caring for people living with dementia.
Speaker 4:As I asked how I got started in narrative Gerontology, I think I grew up in a household where I was interested in drawn to stories. I had some sickness up and on as a kid, so I a lot of times I would be reading the Hardy boys, you know, and maybe I should have been reading my textbooks from school and I was, you know, as befits the you know a man or people of his generation in the maritime. She was a good storyteller and he could take the most innocuous every day event and turn it into a fun, riveting, interesting story. And I did listen to the ministry myself, as I mentioned, or about 10 or 11. He was a minister and I followed in his footsteps for about 10 or 11 years and in that role I did listen to lots of people's stories. I mean, that's how big part of how I think ministry is carried carried out. You try to get to know your people and that means listening to their stories. And so I decided to pull away from full time parish ministry and go back to university.
Speaker 4:I became fascinated with this concept of life as story, or the familiar phrase, the story of my life, and I started my studies and a dissertation to that topic sounds a little strange as a topic for research, but I kind of tried to unpack that, that idea, the story of my life, which is a phrase in English, which, which in English, in English at least, which we hear quite often and perhaps use fairly frequently, and what's in that way of speaking about life? In what sense is a life a story? And the result of my preliminary reflections was a thesis and then then a book called the stories we are, and it is quite a bit about how I see the relationship between the stories by which we understand our lives and who we are, our identity. There is a link, not always a super tight link, but a link between the stories that we recall about our lives. The stories by which we are, who we are, where we've come from, where we're going, are, for better for worse, tied up with who we actually are as people. You can't separate people from their stories. I guess that's the bottom line.
Speaker 4:Fortunately, as the universe would have it, I was able to meet Gary Kenyon, founder and, for many years, chair of the gerontology department at St Thomas University, and when I first met him, we're interested in something which was being called biographical aging, and they also had the term narrative gerontology. As you know and as your listeners would know, gerontology is a multidisciplinary field that has many different sort of focuses. There's bio gerontology, which looks at the biological dimensions of the aging process. There's social gerontology, psycho gerontology, religious gerontology, educational gerontology so what the heck? Let's have another sort of subfield. And so narrative gerontology is the one that I immediately became intrigued by, given my interest in stories and my and my dissertation on the stories we are. So Gary and I, from the get go, had a great connection and collaboration.
Speaker 4:We wrote a couple of books together, began meeting other people around the world who were also interested in the biographical as opposed to the biological aspects of the aging process and how our, how our stories change over time, from when we're children the stories that we entertain about who we are when we're kids to when we're teens, to when we're in our 20s, 30s, 40s, 50s, 60s and so forth. And I began to think of our own lives as novels that were in the midst of as author, coauthored, protagonist, narrator, editor, reader, kind of more or less at once. And it's a strange concept, but once you crawl inside of it it opens up a lot of intriguing possibilities for thinking about how we make our lives and how our lives change and unfold, very different from the biomedical approach to aging, which tends to look at aging as a problem or a set of problems to be solved or something that we should try to delay or defy or whatever, whereas I think looking at lives as unfolding stories gives you a different and potentially more positive insight into, into the changing process that we call aging. And I think that thinking about the narrative complexity of life, and of later life especially, it represents kind of a different starting point, a different paradigm to use that word for thinking about identity, thinking about development, for thinking about health, frailty, wisdom and also dementia, which is where I'm a newbie. Really you guys are the experts in this area. So I'll have a few things to say a little bit later about narrative and dementia, but I just wanted to give you a kind of a background of how I got interested in narrative gerontology initially.
Speaker 4:One other thing on that point a well-known narrative psychologist by the name of Dan McCadams talked about, and he's a developmental psychologist. So he thinks in terms of stages. He says, broadly speaking, you could think of a human life as going through three sort of stages. One is what he calls the pre-mythic stage, which we go through when we're kids and we're sort of gathering material, little stories here and there and so forth, but what will eventually become maybe central to our sense of identity, which we begin to work on fashion more consciously when we move into our adolescent years, that's when parents see their children starting to take authorship of their own lives. That could be a pretty uncomfortable time for many parents. And as we go, moving to our 20s, 30s, we have relationships, maybe have families, we develop careers, we change jobs, change marriages, whatever, and so forth. The plot, if you will, continually thickens.
Speaker 4:He calls that the mythic stage, when we're kind of building this kind of this internalized myth, not as in untruth, but kind of a sort of a guiding story as to who we are and the latter part of life, which I'm not gonna say when it begins technically or chronologically.
Speaker 4:He says maybe we move into the post-mythic stage where we start to look back upon our life and maybe step back from the story that we kind of understood ourselves in terms of, begin to engage in some degree of life review and possibly, you know, are preparing for the final stages of life when we let our stories go. So I think I'll just end that there, Davie. That's kind of a long winded answer to your first question. One other quick thing before I is that I think as we age and as we, you know, our physical circumstances change and become more limited, there can be fewer and fewer opportunities for us and fewer and fewer listeners available to us to tell our story too and, in that respect, feel like ourselves again. And you know, that can happen in many institutions, where people are so busy attending to the physical needs of the residents that the narrative needs, if you will, can often go overlooked, and I think that can lead to something that I call narrative atrophy. Regardless of whether dementia is part of the equation or not, no, that was amazing, bill.
Speaker 2:You just brought me on a little journey all the way back to my initial interest in narrative gerontology myself, and I think it's probably bodes well for just for our audience as well to understand that both Ashley and I have actually shaped a very keen interest in this area of gerontology, large in part because of you and what you were saying at the beginning.
Speaker 2:I guess I kind of started on an unfair point, because asking you to answer that question of how to shape your you know what shaped your interest in the field of narrative gerontology is very much a loaded question.
Speaker 2:It's because it just reminded me of the fact that you and I have had many conversations over the last couple of decades that it's that idea, that it is a perspective or a worldview and that it's kind of like once we, once you, take that perspective of understanding that we are stories and that our understanding of the world and of our lives are shaped by story.
Speaker 2:You can't kind of unknow that, you can't be it. And it just reminded me of, you know, I guess, the and what I will and Ashley, I think, is probably dying to chime in here, but what I would love to you know chat about in a couple of minutes is just the concept of how that, then, that type of a perspective then, can lead to a more positive narrative for somebody who is diagnosed with dementia or someone who's caring for a loved one of dementia, which oftentimes the narrative around that type of a journey starts out as being quite negative. But I'll see what. Ashley, I'm sure you have lots of thoughts going on in your mind right now that all Absolutely, and so thank you again, bill.
Speaker 5:I think you've just reinvigorated why Daphne and I have both seen such value and, as Daphne said, really identified and worked to use the concept of narrative in the way that we work, and it's really helped shape us as professionals, and you know, another topic that you've talked about through the years is the concept of wisdom and just the wisdom that you have around narrative and narrative gerontology. You know, I think we're so excited for our listeners to be able to have you impart some of that wisdom, and then I know we'll talk about it. But I just I wanted to kind of connect a little bit as well around. You've talked about how, medically, you know, we think about the medical care of an individual, but so often we don't consider or don't recognize just how important that narrative care is, and so I just wanted to highlight that again that as storytellers and story receivers throughout our lives, you know that story isn't over just based on a diagnosis of dementia or another disease and, if anything, it's more important to dig deep into those stories.
Speaker 5:So, thank you.
Speaker 4:Well, yes, thanks for underscoring the concept of narrative care, which some of us, you included, have found a useful concept. I've heard variations on that from other people narrative and narrative, and narrative engagement, where we engage with one another in a mutually caring kind of way. Narrative care can maybe suggest that it's me caring for that poor person who can't do X, Y or Z, but I feel narratively cared for on a daily basis through the conversations I had with good friends who keep my story open I guess I could put it that way and then are often sort of helping me to discover new adventures. And one of the things that we narrative gerontologists have been playing around with, and I particularly have been writing about, is the narrative challenges, as well as the narrative developmental tasks, but the narrative challenges that we can face anyway in later life and that can maybe become recipes for a depressed mood and so forth, and so I think that's a good thing, and I think that's a good thing, and I think that's a good thing, and unfortunately maybe get treated with medication when perhaps what's would be better is a good dose, a good dose of narrative care, because narrative, one of the narrative challenges, is what's been called narrative foreclosure, and you know the sense that.
Speaker 4:Well, I'm such and such an age. I can no longer do X, y or Z. My life is such, continues on, and so I think that's a good thing, and so I think that's a good thing, and so I think that's a good thing, and so I think that's a good thing. And so I'm not only in my own case. I feel like I'm always on the edge of some new adventures, so I'm, I'm, I'm eager To, you know, discuss ways that we can care for one another.
Speaker 2:In all kinds of contexts and help each other keep our stories Open and growing. So true. And you, I'm glad you brought up the concept of narrative engagement and I think that's a good thing. It's it's a great thing to do.
Speaker 2:I think that's a good thing to do, and so I'm going to talk about that in a little bit, and I'm going to talk about that in a little bit more detail In a little bit more detail, in a little bit more detail of ours, dr Michelle Grayson, in some work that's going on at St Thomas University right now, I believe, and I'm sure it's it's you know, something that's been being looked at by many.
Speaker 2:But certainly that topic and to your point of like it being the difference of engaging someone versus like imparting, like you know the way that you're doing it, and it relates it back to you know just the perspective of narrative and like taking on a world view of narrative, is engaging someone in a meaningful way in their story.
Speaker 2:And I just thought just brings me back, I guess, to underscore Really again the point of you know how can somebody who is caring for a loved one, or at home, or someone who's had a recent diagnosis of dementia and that's what I think is the biggest challenge, and I think that this is something that's been really, really, really important to me and I think that it's a big part of the narrative engagement relate and I think that oftentimes, as an individual who is advocating for themselves, or as a care partner who's caring for a loved one or a friend In the community, at home, it often it's a really important part of the narrative engagement, and I think that the practical observation that I've learned through my, you know, interactions with you and others over the years is that Taking that perspective or tapping into that engagement in the narrative people can do when they otherwise feel like they can't do anything.
Speaker 2:So it's a very positive you know, it's something tangible that you could do if you were trying to support a person in care, and it doesn't require a lot of money, it doesn't require, you know, a lot of coordination and you know with the system or different things, and it can be something that really enhances the journey.
Speaker 4:Yeah, and the journey is one that we make usually with other people in our lives and I like to talk about, you know, co-authoring, that our stories are co-authored in relationships, starting out, for sure, with our families.
Speaker 4:You know, I can't sort of think of my own story as Billy Randall without thinking of my father and my mother's story and the Randall family story and my sister's stories and the way that interacting with them in those early years of my life, you know, shaped my worldview, shaped my story of who I was, for better or for worse.
Speaker 4:I mean, oftentimes we go into therapy later in life because there are aspects of our inner stories that need to be worked on and need to be kind of brought out into the light, so forth.
Speaker 4:The co-authoring, you know, in terms of, you know, spouses caring for partners with dementia and so forth, that's one of the things that is particularly I'm sure you can speak this better than I particularly seemingly tragic and so forth, is that this person that you've been living with and building a story together with and you have so many we stories, you know, the partner who's moving into the world of dementia perhaps, is less able to share in those stories, Share in those stories or create new stories, and there's been some interesting stuff written and I haven't read it myself lately on narrative entanglement, to how our stories are entangled with one another in all kinds of ways and that in marriages and so forth a couple of relationships where one partner is dealing with dementia it puts in a sense more pressure perhaps on the caring partner to keep the we stories alive or to engage in what's been called narrative scaffolding.
Speaker 4:Again, I don't have my mind wrapped around these concepts, but I do want to come back if I couldn't talk a little bit about one of the exercises that I've used with some of my students to sensitize them to a narrative perspective, and we can come back to the co-authoring in a couple relationships where one person has dementia a little later maybe.
Speaker 5:Well, Bill, that sets us up just perfectly, I think, for our next question. So would you be willing to walk us through a narrative exercise that someone could use at home?
Speaker 4:Well, I have an exercise that I have used with students and with people taking courses with me, who may or may not be, you know, in their 20s or whatever. So I think it's an exercise that can be interesting in anybody's life and that's simply. You know, I invite people and I have some questions that I put together in a kind of a discussion protocol. I invite people to think of think of your own life as a story, which might seem like a dumb thing to ask people to do, but actually in my experience, it's something that most people start to have fun with. For example, as if in this exercise you're invited to play with the metaphor of life, the story, by stepping back and thinking about your own life as a story. Then I say read and reflect on some of the questions that follow and in your learning journal, write your answers to a number of them. For example, one question could be what have been the main chapters of your story so far? It's central plot and subplots. In other words, I'm asking people to you know, intentionally play with what we call the elements of stories. You know that we all had to maybe refer to when we were writing book reports back in school days. You know the plot, the characters, the theme setting and so forth and you know I invite people to reflect on what have been the principal themes. Do you think the principal characters, major and minor, that have been part of your story thus far? I think just, and I've got a whole bunch of other questions like what scenes or experiences stand out as turning points? What title and subtitle would suit your story so far?
Speaker 4:Typically, in my experience, students and others have fun with this because it invites them to kind of step back from the life that they're immersed in and have a kind of an affectionate, playful, ironic detachment from the lives that they've been living thus far and to see kind of maybe the bigger picture, to identify certain recurring patterns or themes, and also not only stepping back but seeing where you'd like to make change and seeing how things that you're going through now, which seem sort of totalizing like this, is. This is everything that my life has boiled down to and learning to see them or having the opportunity to see them as just a chapter that all get through. I've had students as young as 19 right eloquently in their learning journals to me about how they found this seemingly simple exercise very empowering and enable them to find in themselves a sense of authorship or narrative agency, that you know there's stuff that they're going through and that seems so completely overwhelming at the time. But when you think and step out of things for a moment and think of your life as an unfolding story, with chapters and episodes, and you think of that horrific thing you're going through as just a chapter, then that there's something to be learned from or some growth that's taking place in the midst of that. It does give you a more, I think, more hopeful and more agentic perspective on your life that what you're living now is not the whole story.
Speaker 4:There will be other chapters, other episodes, and it also and this is this maybe ties into what people do in the world of narrative and it helps, I think, person to realize that maybe the story that I'm living or have been living, there's then certain things about that I would like to change. Well, maybe I can change Sometimes the stories that we, that we're living, which may have, you know, limitations to them, because we've inherited them from our families, from our communities, from our surrounding culture, but they're not necessarily our story, I know for me personally. I think I went through a phase in my mid-30s when I realized that the story that I had been living and so forth wasn't necessarily the whole story of who I was. And I did went through a period of I would call it re-storing and you know the result is I came to St Thomas and took up a whole different sort of career, although related to my previous career, no question.
Speaker 4:So, that simple exercise of thinking of your own life as a story and the people who are part of it spouses, partners, siblings, friends, acquaintances, random strangers as characters who come and go can afford you with a sense of I call it an affection, detachment from, and yet, at the same time, immersion in the likelihood. Does that make any sense at all?
Speaker 2:That was awesome, Bill, Thank you. No, you're. I'm just sitting here giggling to myself because it's like it's almost impossible for us to have a linear conversation when we're together and you've just given me so many other thoughts. And in relation to the practical application of this technique, or the narrative perspective for individuals who are we are supporting, maybe, who have dementia, but also that concept of it, you know it being, you know a subplot or a chapter Also, like we speak a lot about, you know how to, ways in which to build resiliency for care partners who are actually doing, you know, having on a role that has been oftentimes quite unexpectedly or, you know very much, not planned to be.
Speaker 2:Now they're finding themselves in a role where they're caregiving for someone or assisting someone in their journey with dementia. So the idea of also utilizing that as a concept for helping those individuals with self care is what just came to mind when you gave that example, in addition to, you know, helping someone also who has had a diagnosis of dementia, for sure, I just taken off my shelf the last couple of days and started to read properly a book that was sent to me as a gerontology prof by the publisher, probably familiar with the book.
Speaker 4:It's called the long hello memory my mother and me, written by a woman named Kathy Borey. The other book that I've just taken off my shelf which I have read and actually reviewed is from my friend and fellow narrative person, mark Freeman, who's a prof down in Worcester, massachusetts, who wrote a lot, who has written a lot about his relationship, his journey with his mother who had dementia I'm not sure which type, but he talks about in this book which is entitled Do I Look at you with Love question mark reimagining the story of dementia. It's quite a profound, very personal book and also academically very solid too because it looks at the different stages of his journey with his mother, you know, from the early days to the final days. And the fact that he can he can subtitle a book reimagining the story of dementia, because maybe we have certain stories that we put on aging and on dementia itself, like there's you alluded earlier somebody did to the kind of the overarching narrative of decline which is floating around in the air out there in society as to what aging itself is, regardless of whether dementia is part of the equation and aging is a downer. You know, the life is for the young people and so forth.
Speaker 4:Ads are about anti aging products and so forth that help us defy or delay the inevitable process of aging. But we need to reimagine, I think, aging in general from narrative of decline to, I would call, narrative of discovery, and I've been writing quite a bit about that these days, thinking quite a bit about this these days, in conjunction with the idea of aging as adventure and the fact that someone like Mark Freeman, and then to a lesser extent then, kathy Borey, can talk about positive aside to the journey in dementia. With dementia I mean Bode's well, the biomedical model, which is wonderful, and we've, we've, we've developed so many wonderful interventions for various diseases and so forth it doesn't necessarily help us when it comes to a situation like dementia. I don't think.
Speaker 2:No, I would agree, I would agree with that. I think again it's about. I mean, the title of our podcast is redefining dementia, so it's that's our goal, right is to help people to understand the possibilities within this albeit unplanned journey for most people. But that there are still possibilities is, you know, something we feel very strongly about, as opposed to it being kind of the end of end of something. Oh, I wanted to segue and this will probably just make you chuckle but thinking just a bit more of a practical, a practical question for listeners.
Speaker 2:I know, again, I've shared with you lots over the years of different, I guess, sort of hurdles or things that have happened in the actual practical application. So I'm thinking about now, let's say, a care partner who's at home, maybe caring for a spouse or for a mom or a dad, or alternately it might be you know, someone who's providing home care in the home and might want to kind of dip their toe into, you know, some type of narrative engagement with someone. So one I guess I would wonder if you have any just like quick little thoughts on where someone might go to dip their toe in, or and or alternately. This is the part where you'll chuckle oftentimes what happens, especially with certain cohorts who are, you know, 80 plus. They're from generations where it was considered often frivolous to kind of talk about oneself, or you know thinking about my life, or you know kind of navel gazing or whatnot. So what are some thoughts that you might have in terms of things that could be done to overcome that type of perspective if you're trying to dip your toe in, let's say, into narrative care or narrative engagement with someone?
Speaker 4:Well, if I were, for example, if I were a person working in the sort of institution where my mother lives, which is a retirement home, you know actually that institution doesn't have these, but many nowadays do shadow boxes or window boxes I guess they're called outside the doors of particular residents, which give a person walking into that person's room residents room for the first time a kind of a bird's eye view of important aspects of that residents life. You know metals, for example, that they have a military background, photographs of family, you know a picture that they painted once or whatever, something to give you a clue, to equip you, therefore, with a question, a kind of an open-ended question, that that you might then begin a conversation with the resident as you do whatever tasks you're required to do. As you carry those tasks out. I've benefited from some of the work done in the Netherlands.
Speaker 4:There's a psychologist whom actually Gary Kenyon and I visited at a large retirement nursing home in the Hague and she wrote a wonderful chapter in the same book that your chapter appears, daphne, about the celebrating our stories program. She writes about, you know, the importance of asking the right kinds of questions for people with dementia, not typically sort of straight on what, when, where kinds of questions, but more open-ended questions, not you know what's that? Or when, when did you do that? Or you know where was that that you live, because those questions for someone moving into cognitive impairment could be quite frustrating and embarrassing and because they don't necessarily have that accurate recall that that's being called for by such questions. So questions like you know, how do you feel about this? What are your thoughts on this? Or I'm thinking of the work of Ann Basting. She coins the phrase beautiful questions.
Speaker 2:Oh, I love that.
Speaker 4:And she's. She's a master and an artist and in that kind of thing. But asking questions that that, that accept that the person, that they, that they have cognitive loss in terms of dates and facts and figures about their life, they're still. They're still a person, they're still a story there. This is the. The person with dementia has has a different way of connecting to who they are or and maybe is compromised in terms of their ability to communicate their story or stories to, to, to the rest of us, that's. That's not necessarily the problem of the resident as much as it is of us, who have certain unquestioned expectations as to what a good story is or should be. And so for a, for a partner, for example, who's, who's hoping with someone in the early stages of dementia can be understandably very frustrating when that partner doesn't remember specific things about their life or about the, the, the relationship that they've enjoyed with their partner and so forth. But if we could I mean Clive Baldwin, colleague at St Thomas University, has written quite persuasively about we need to have a different understanding of what stories are and different. We need to bring different sort of assumptions to what constitutes a life story and not be so hung up on has to be chronological, has to be consistent, has to be factually true and so forth. That, and maybe for me the key is, would be and I think I go back to my ministry days, if that's okay to refer to those I remember visiting a woman in rural Saskatchewan in a hospital. She wasn't technically on the list of members for the church that I was serving, but she was a Lutheran and somebody said that she doesn't have a Lutheran pastor, so could you visit her? So I went into her room in the hospital and I'm not sure. She was probably in her late 80s, but she was in a quite a sorry state and I didn't know what was going on. She was, she was lying in her bed, obviously had some physical concerns that brought her to the hospital as well. But she said oh, the, the, the, the, the horses are out of the barn, I don't know what, what to do, and Jack's not going to be back yet and so forth. And I realized quite quickly that she was somewhere back in her past, maybe when she was a young mom, and they did have horses and cows and so forth, but the horses had got out and the world that she was in on that particular afternoon, in that quiet hospital room, was a world that was quite chaotic and so forth. So I decided that, you know, I could say, you know, mrs Jacobs, you know it's November 1981 and you're in the hospital. I could have called her back to quote unquote reality, but I decided to crawl inside of her realities best I could, and you know so, okay, well, you know where the, the, the horses, might have gone. Maybe I can help you. And so she had a kind of a conversation, as I recall, where, where we sort of things out and it ended up calming her down with quite an unusual experience and I'm sure it's it's right in the you know the textbooks for dementia and dementia care, but it was my, it was an eye opening experience.
Speaker 4:The other person, also in Saskatchewan, she had been a powerhouse person, a feminist educator. She was an NDP candidate, you know, had a family and they had a farm and so forth, but she developed some form of dementia and I remember visiting with her at the nursing home in that community and as I walked in, it would be not uncommon for her to be standing at the door with a big smile on her face. I'm not sure if she knew who I was, that didn't really matter. But she's, ah, life's quite a journey, isn't it? And I thought, well, what a wonderful positive assessment that is to to make you know you and you're in the midst of your dementia situation. But you know what you? You're saying something. True, life is quite a journey. And maybe she was thinking to some degree I don't know about the various things that she had lived through in her own life. I think the specific memories were were kind of gone, but the overall assessment of life as being quite a journey was there.
Speaker 4:And you and I have talked, daphne, and asked me about situations again in in institutional settings where you might have a particular resident who's got some cognitive difficulties and they have some problematic behaviors, or that's what they're labeled by the staff. You know, like this one chap I recall hearing about in Newfoundland, the student of mine told me this once about a resident in a nursing home who was walking around fiddling his thumbs and fingers and just I can't show you because we're not on the screen, but and it just for some reason it drove the staff kind of crazy. They thought what is he doing that for? Until somebody looked at his record and realized that he used to play the box accordion, and you know singing and playing in house parties all around the Bay Bay. So I'm not sure they may have produced a box accordion for which his fingers had something then to do, you know. But there was a story behind the behavior that was otherwise deemed problematic. Lots of stories, I'm sure, about that.
Speaker 2:Oh my gosh, you gave me again so many thoughts. But just going back to your example, well, all of the examples you just shared, but the Saskatchewan example when you said you know, you entered into her moment in her world, and it does have a name and it's called validation therapy. Okay, and just I'm saying that for the audience's benefit as well, and we'll probably share some, maybe share some links around that, but for you as well. There's a woman by the name of Naomi Fale who's based out of the United States and she has done so much work on that type of an approach for individuals with dementia, so it just might be interesting for you to look her up, and we'll make sure that we can have both some links to her stuff in our like on the podcast webpage and stuff once it's all done.
Speaker 4:That'd be great.
Speaker 5:And so and that's it. It just. It also directly ties so closely, like, I think, for me. What keeps going through my head when you're sharing those examples, bill, is just how closely an interconnected narrative care narrative excuse me, not just narrative care, not specifically narrative care narrative, person-centered care, person-centered dementia care, person-directed care how all of those concepts are all at the core around stories and life history and really understanding and knowing a person, and whether it be their current story or the story that they're living, as you shared with that example.
Speaker 5:It's really thank you for that. So now I wanna ask you this is our final question- and a question that we love to ask all of our guests how would you like to redefine dementia through the use of narrative?
Speaker 4:Well, I don't have a fully thought out capital A answer for you, but I do have a lot of thoughts that I was quite excited to jot down in preparation for our conversation today. So I'll just maybe kind of run through some of these, if that would help, and then maybe they'll point the three of us together, and listeners as well, towards a redefinition or a re-imagination, a re-story of dementia. But one of the points I wanted to make and I think I've made a lot of it is that there is this kind of overarching narrative of decline as to what aging generally is, regardless of dementia but also including dementia. But for me and I'm feeling that for you for sure persons with dementia are still biographically active, if in different ways than we maybe have been used to with our interactions with them. They still have what Clyde Baldwin call a citizen narrative, citizenship. But they sorry for using the word they, and that's not because. Another thing I wanted to mention in that whole idea of redefining is that the dividing line between normal and dementing, if I can use that word, or between us and them, to use that awful distinction as regards memory generally, is not as sharp and as clear as we might assume or think, and I spent some time thinking about this and writing about this.
Speaker 4:A few years ago I'd run across a book called the Seven Sins of Memory by a Harvard psychologist named Daniel Schachter, and I like this idea that autobiographical memory, which is the memory that we draw from in understanding and sort of defining who we are. Autobiographical memory is often what starts to go missing, as I understood in the dementia process. Other types of memory like procedure, how to tie your shoes or do things, how to ride a bike, et cetera, that can stay on, or how to play a musical instrument, et cetera, but that autobiographical memory is often threatened. So I did a piece kind of tongue in cheek about how the dividing line between normal and dementing memory is not nearly as sharp as we might think, because ordinary, everyday autobiographical memory that we all rely upon for our sense of self and identity is a lot fuzzier than we would like to assume. And the dominant memories that I sort of go back to is trace my story. Are those the facts, ma'am, or are they kind of stories, half myth, half fact, or whatever that I've cobbled together to explain myself to myself? There's also a sense in which the stories change over time, the key stories I call them signature stories by which we understand who we are got a set of them. You probably have a set of them for yourselves as well that those change over time.
Speaker 4:You've heard me talk about the iron lung story, and when I was a kid, I was two years of age and my sisters and I all had polio, and I had polio of the diaphragm and was placed in an iron lung for two weeks and for years and years and years I believe that that was actually what had happened until in my 40s. I finally did a little reality check with my parents and said you know, when I was in the iron lung with polio, my mother says what are you talking about? You were never in an iron lung. Where'd you get that idea? Yeah, you had some pneumonia going on, so we rubbed your chest with a papal rub, but you were never in an iron lung. So I had to kind of rethink that story that I thought was true as to, you know, the early days of my life was not true, at least chronologically or historically, but maybe it's had some sort of other type of truth. So anyway, bottom line is that in my little article on memory and dementia. I made the point that, hopefully persuasively that there's not this sharp dividing line. I mean, what we notice with people who have dementia is that their recall of facts that we might think are terribly important are fuzzy and parts and pieces go missing and so forth, and then eventually the whole story itself might go missing. But is that wildly different Maybe only in degree, but not necessarily in time from the way our own memories change over time? So that was one thought that I had. It's sort of pointing in the direction of a redefinition of dementia.
Speaker 4:The other thing I could say, based upon a wonderful little essay written by a nurse named Jane Crisp, out of Australia, who looked after her mother who had dementia, and she talks about how the more time she spent with her mother and her mother would sort of perseverate on certain stories that seemed to be basically what had happened to her mother. It seemed like they were more like tales that had themes in them, waking dreams. She called them and she began to sort of step back with affection and so forth from what her mother was saying and how you know, even though it wasn't technically true, there was, her mother was expressing truths, themes underlying dynamics about her life and her frame of mind that Jane Cress began to appreciate. I coined the phrase dream encha. I don't know if that's I mean. When we go to bed at night we're in a state that you know. When we step back from and wake up from the dream, it's pretty wild. But in the dream world itself, one scene unfolds into the next and we don't seem to think anything of it, we just kind of go with the flow. So these are all pointing in the direction of.
Speaker 4:We need a bigger frame to understand what dementia is and not see it as the worst possible tragedy that could befall a human being, but rather maybe an accelerated or exacerbated form of a process that we might all go through, you know, across the lifespan. There's a theorist by the name of Lars Torrenstam, gerontologist, who developed something called gerotranscendence, a theory of gerotranscendence, which basically says that as we get very old like my mother at the age of 101, the dividing line between self and other becomes more fuzzy. The dividing line between past and future becomes more fuzzy. We're more able to live in the moment than the dividing line between life and death becomes more fuzzy, and I'm not such a great concern. My mother at 101, I don't sense that she's sort of paralyzed with anxiety about the fact that she's much closer to death at 101 than maybe I am at my age, because her whole worldview has shifted and changed.
Speaker 4:Some have suggested, myself included, that maybe the journey of life is ultimately about unselfish and in some respects disconnecting from the stories by which we've lived, and sometimes the stories by which we've lived have not always been very healthy stories. We can get trapped in some pretty dark, awful stories, either in our families or in our communities and so forth, and being de-storied to use that expression might be the worst thing in the world. And maybe, as we think about life, death and beyond, we need to be prepared for letting go of our stories. I noticed in my dad's case at the age of 98, he had spent a lot of time being concerned about family history and so forth, had written lots about that and would love to tell stories about his own life. He wrote his autobiography when he was, I think, 80 or whatever, but by the time he got to be 98, it was like he was less interested in all the stuff that he had been and done anyway and he was just happier being in the moment.
Speaker 4:I remember visiting him at the retirement home and we had been able to put up bird feeders on his window and two bird feeders One was a hummingbird feeder and the other was a chickadee feeder and he would sit there not suffering from dementia per sight, but he was in a different space. He was in that gerotranscendent space that Torrhenstam suggests. And when I would come to visit him in the afternoon, the biggest joy that he had to report was that a hummingbird came to the feeder at 103 and the afternoon he jotted this down on a little notepad and took 17 sips. You know, when they sit there and they tilt there, they'll in sip after sip after sip. And how a goldfinch came and sat there in the sunflower seed feeder and sat there for 23 minutes chewing away on the sunflower seed, that's what brought joy to dad. It was like living in the moment and I thought, wow, that's a great way to be.
Speaker 2:Oh, that is so interesting. I think there's a theme, like you say, of all the thoughts that you've shared, and I'll share one little, well, one of the theme. I think I'll kind of wait and hold off on that for a sec because I think we can probably conclude with, like, as you say, arriving at the same destination with the idea of redefining the experience of dementia. But that story you just shared about your dad was beautiful and it reminded me of a story that I'll just share from when I was working at an organization, long-term care organization, throughout the COVID pandemic, and it was in the early days of COVID and it was all.
Speaker 2:Everything was very regimented and one of the things, of course, we all, as care professionals, because of policy that, frankly, was just imposed right, like you know, overnight, we were having to just make all of these changes that were really kind of causing the pendulum to swing from a person-centered approach to more of a, you know, back to an institutional kind of approach or task focused, and one of the things that we had to do for infection control purposes was we had to split people up in their tables in the dining room, like, create more space, more distancing in the dining rooms and so, as a result, we moved people like away and we had one lady who did not have dementia, but this is what reminded me of when you were telling your dad's story. She was in her 90s and she was so upset Like you know. Otherwise, in you know, prior to this, she would be someone who would go along with everything, and she was so upset during the time of the the dining room, you know, when we had to mix everybody up and move them around, and because she didn't like where she was sitting and she didn't like that, we had changed her spot. And it was very uncharacteristic of her in the sense that normally she just was very easy going. And one day I was having a conversation with her and was actually heartbreakingly it was when we had put the seats back, like after the few months where we had to have everyone separated she said to explain to me why why she was so happy to be back, and so she talked about it was she faced out a window of of like of the dining room, a big window, and while there was nothing that she could like, she wasn't seeing anything physically seeing anything in that time of her life, but staring out that window. There was a hill outside the window and she would picture when she was in the dining room.
Speaker 2:She told me her daughter and another young woman who her daughter had had had a very significant disability since birth. And there was another lady who had lived at the nursing home in the earlier years, much, much earlier, and she had visions of them when they were young and they would play outside, like in the yard at the nursing home, and that was what she did every day. When she looked outside, when she was eating her meals, she just from having that scene. It was the memory. Anyway, it was just the. The focus of what she was focusing on in the narrative was something so simple and we didn't even know. Anyway, just much like your dad, the story about the birds, like it's. You know, it doesn't have to be that deep in order for it to be deep, if that makes sense.
Speaker 4:It makes me think of the old him key phrase from which is unto the hills around. Do I lift up my longing eyes? And maybe this is a point to to talk about? For where, for me at least, narrative and spirituality and aging kind of converge, or narrative aging and spirituality kind of converge, because I do feel.
Speaker 4:I feel this is just that we are spiritual beings having a human experience, not the other way around, and that that life is ultimately small S spiritual journey as well as biological journey, and there are different ways to live that journey, different ways to get to the final destination and so on. But I for some time thinking about life as a nearing death experience, sorry, aging as a nearing death experience. We've you probably heard about the near death experiences people who claim when they've been technically dead on the operating table for five minutes, they go somewhere, they experience unconditional love, they do a review of their lives, they, they, they feel like that's home somehow, and then they go back into their bodies on the operating table and they come back transformed. And I think there's a similarly transformative effect that aging generally not necessarily the mentioned specifically does tend to have on us if we'll just let aging take its course and not fight it and defy it and try to, you know, think of it as the enemy.
Speaker 5:I mean. Everything you've said this entire time, though, is so profound, and I think really getting back again to that small N as well in narrative. It's not all of it. Those big stories, and you know it doesn't have to be about those pinnacle moments in your life. That can be, like you said, something as simple as where do you find joy and value in your last days as you're, you know, as you're coming to terms with your- Immortality.
Speaker 5:Humanism and yeah, where you know where your spirituality, where your journey is with your spirituality and also your life and your narrative. So we just wanna thank you, Thank you, thank you. I think we've all confirmed, and I'm sure all of our listeners will have confirmed as well, that we need to have you back. This isn't a single session, I don't think with Dr Bill Randolph. We just wanna thank you for coming on the podcast today.
Speaker 4:Well, thank you for this wonderful time. She's always delightful to talk with you two and we've had great conversations over the years at different times, but this has been another joyful romp and I hope that some of what we've been exploring or saying is will be of interest and inspiration or help or whatever to those listening.
Speaker 5:Thank you. Yeah, I'm confident that it will be. Thank you.
Speaker 2:Wow, this episode with Bill Randolph is simply beyond expectation and both Ashley and I ended that conversation with such humility and such gratitude.
Speaker 2:We cannot believe how lucky we are to know him and to call him a mentor and a friend. The themes that he shared and that we discussed so passionately in this episode of narrative and our life stories and how using our life stories can help us to build resilience those themes were, just frankly, quite invigorating and I was reconnected to so many thoughts and ideas that I have been inspired to have because of my connection with Bill and for the opportunity to learn from him over the years. So we hope you enjoy this episode as much as we enjoyed making it. This is only episode number two of our podcast and, if it's any indication from the first couple of episodes, it's only going to get better and better. We're very happy to have you all along for the ride. For links to resources and ideas mentioned in this episode, and also for Bill's full bio and contact details, please refer to our show notes, which you can find linked in the podcast section of our website.
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 Jana 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. We look forward to your upcoming content.
