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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
Dr. William Randall: Aging as Adventure - Reframing Life's Later Chapters
Dr. William Randall returns to Redefining Dementia with a perspective that turns conventional wisdom on its head: what if aging – and by extension, dementia – isn't a narrative of decline but an adventure?
With his background in gerontology, theology, and psychology, Dr. Randall guides us through a thoughtful exploration of adventure as a framework for understanding later life. He defines adventure as "any venture that takes us outside our comfort zones," involving elements of uncertainty and unpredictability – qualities certainly present in the dementia journey.
The conversation unfolds around four distinct directions of adventure that aging invites us to experience. There's the adventure outward through new experiences and activities; the adventure backward through life review and reflection; the adventure inward through deeper spiritual questioning; and perhaps most profound, the adventure forward as we approach life's final transition.
For caregivers and loved ones supporting someone with dementia, this framework offers a refreshing perspective. Rather than focusing exclusively on loss, Dr. Randall suggests viewing dementia as part of a natural process of letting go – of possessions, of illusions about ourselves, and even of our stories. This doesn't minimize the challenges but provides a different lens through which to understand them.
Throughout our discussion, Dr. Randall emphasizes that people living with dementia maintain their "narrative citizenship" even when unable to tell their stories conventionally. He encourages caregivers to become "story companions" who honor each person's unique reality rather than trying to force them back to ours.
This conversation will leave you questioning assumptions about aging, memory, and consciousness itself. As you listen, consider how shifting from a mindset of decline to one of adventure might transform your approach to aging or caregiving. How might we honor the wisdom that each person brings – however it's expressed – as we journey together through life's greatest adventure?
Dr. William Randall's Website
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About our Hosts:
https://www.personcentreduniverse.com/about/
Welcome to Season 2 of Redefining Dementia. I'm Jana Jones and I am thrilled to be joined by my co-hosts, daphne Noonan and Ashley King for another season of fresh conversations, new insights and valuable tips on navigating dementia care.
Speaker 2:Hi, I'm Daphne. This season, we're diving even deeper into topics that matter, from caregiver resilience to meaningful engagement. Plus, we'll have a fantastic lineup of experts to share their wisdom.
Speaker 3:And I'm Ashley At Person Centred Universe. We help you provide person-centered dementia care at home, work or in your community. Through this podcast, our goal is really to strive toward a better world for those affected by dementia by sharing resources and insights from experts around the world.
Speaker 1:We are also introducing a new format this season with rotating co-hosts. You'll hear from each of us as we take turns leading discussions with incredible guests, some familiar faces and some exciting new voices.
Speaker 2:So, before we begin, just a special note the information that we share in this podcast is for educational purposes only. If you or someone you know is experiencing symptoms of dementia, we'd encourage you to seek medical advice from a qualified healthcare professional.
Speaker 3:So don't forget to hit that subscribe button and join us every other Thursday as we explore the many dimensions of dementia care. One conversation at a time.
Speaker 1:Welcome back to Redefining Dementia, the podcast where we explore new ways of thinking about aging, dementia and the relationships that matter most along the way. I'm Janna Jones, and today we're welcoming back someone whose voice and vision have left a lasting impression on this community. Dr William Randall, or Bill as many of us know him, is a retired professor of gerontology, an international speaker and one of the leading voices in the field of narrative gerontology. With a background in theology, psychology and education, bill has spent his career exploring how our life stories shape who we are. His career exploring how our life stories shape who we are, how we grow and how we find meaning, especially in later life.
Speaker 1:In this conversation, bill invites us to view aging through a powerful and hopeful new lens not as a steady decline but as an adventure. We explore the emotional, spiritual and creative dimensions of growing older and how, even in the face of challenges like dementia, there is still room for curiosity, imagination and connection. From the power of storytelling to the importance of letting go, bill offers gentle wisdom that encourages us to reflect on our own journeys and those of the people we care for. It's a rich and deeply thoughtful conversation that will leave you seeing aging and storytelling in a whole new light. So settle in and enjoy this beautiful episode with Dr William Randall.
Speaker 2:Hi Bill, Welcome back to our podcast.
Speaker 3:Thank you.
Speaker 2:So excited to have you here today. I think you were thinking about this this morning. I think you may have been the second guest on our podcast, so welcome back. We're very excited to have you here today and sharing your expertise about, and ideas about, a topic that actually you were just starting to kind of dip your toe into when we last chatted, which is the topic of well, it will here soon aging as adventure. So I'm really excited to see how that thought work has evolved since we last connected.
Speaker 2:So I'm just going to jump right in, because we know each other so well we could. We're probably going to be off to the races and talking forever here. So, yeah, the last time we interviewed you, bill, on the podcast, you shared with us, of course, your interest, which we know for many years. It was in narrative gerontology and narrative care, and I know those topics are very near and dear to your heart, still and always will be. And but we we sort of have come to realize and understand, since you've retired from St Thomas University, that you've been interested in this concept of aging as a venture. So tell us, why don't you just start us off by telling us and our audience what do you mean by that?
Speaker 4:Okay, I'll get to that in a second, but I first want to say get this out front that I am not an expert in dementia or dementia care. This is where you and your organization have stepped up to the plate beautifully. But what I can offer you and your podcast listeners is a way of looking at aging in general that maybe provides a different sort of framework for thinking about dementia particularly. I don't in any way want to minimize the tragic or the difficult dimensions of the aging process and certainly of dementia, but I have been thinking for a while now, since I've retired actually, that we need a different way of thinking about aging, a different way of thinking about aging overall, not as kind of ultimately a tragedy, which I think is kind of the assumed view of aging that you get in society and in the advertisements and so forth aging as a narrative of decline or as a tragedy almost, but as rather an adventure. And I'm sort of juxtaposing tragedy and adventure in ways maybe I shouldn't do, but that's for the sake of my argument. But let me just say a little bit more about adventure as a metaphor for understanding what aging, and therefore dementia, entails. I mean, who of us doesn't relish a little bit of adventure every now and again to spice our lives up. Okay, to break away from the routine, go on a weekend road trip, hop on a plane, if you can afford it, and go to Portugal or someplace you've never been and see what you can see. So I define adventure as any kind of venture that takes us outside of our comfort zones or our normal routines or habits. Okay, into relatively new territory, whether it's emotional territory or geographic territory or whatever. Okay, and for something to be an adventure I think we can all kind of agree on this there has to be an element of uncertainty and of unpredictability, the possibility of danger, of risk. Otherwise it wouldn't be an adventure, but more like a commute going to Sobeys to buy a loaf of bread. You kind of know where you're going. So an adventure has to have that element of uncertainty and unpredictability.
Speaker 4:And I think right off the bat you could say that dementia, the journey of dementia, is nothing if not an adventure in that broad sense. Um, but um, and you sort of to force something to be an adventure. You can't know in advance where you're going to end up. You hope you're going to end up, where you think you're going to end up, where you think you're going to end up, but you don't actually know for sure. The plane, could, you know, get diverted to a different country instead, or the hotel burns down or something happens and everything's thrown out of whack. But that's part of the adventure.
Speaker 4:You might say, okay, just being born is an adventure. None of us can really remember the journey down the birth canal out into the bright lights of the delivery room, but that's, you could say, and mythologists and folklorists would say that's kind of the archetypal adventure that we all have some experience of, obviously because we're here. Getting married, having children, going off to university, starting a organization like person-centered universe, getting divorced and marrying someone new and raising another family all of that love in general, I think you could say, is an adventure. Going online and looking for love is a is an adventure. You don't know where you're going to end up.
Speaker 4:Sports is an adventure, even just watching sports on TV or watching a movie. It's a vicarious adventure where you get the feeling of the adrenaline rushing through you as the hero or the heroine goes through a series of obstacles and you don't know for sure where they're going to end up or whether they're going to survive. So you could say an adventure really runs through the heart of human life in so many ways. But to apply that word or that metaphor to aging does, though, kind of bring you up short and make you wonder where's the adventure in arthritis really? Or diabetes, or bereavement, or, uh, heart disease, cancer or dementia okay, oh sorry.
Speaker 2:Oh, I didn't mean to interrupt you, I was just gonna. Can I just say it's interesting just hearing you. I don't want to take you too much off the side bar here, but it's interesting because really, when you think about it in terms of how we normally interpret language, right, like so, we think of the word adventure always with positive connotations, right, and so um, with a number of things, that it's interesting just to be thinking about it, not only necessarily in, like, the term of dementia or aging, but in the term of anything that is typically viewed as negative would also be, could be, an adventure, but we don't think of it like it's.
Speaker 4:Yeah and sometimes we don't, sometimes we don't look upon, uh, an experience as an adventure until after it's over, right, and we're out. We're out in the clear and it ended up okay, yeah say well, I had quite an adventure, but at the time I didn't know what was going to go on, you know, yeah.
Speaker 2:So there's mentors that we do want to go on, and then there's some that we don't want to go on. We don't want to go on.
Speaker 4:Yeah, I mean there's, there's. There's what I call intentional adventures, where you decide I want to go on a trip to a really different country. And then there's the accidental adventures that we get pulled into whether we want to or not, and many movies revolve around the hero or the heroine getting pulled into an adventure accidentally. They were happily minding their own business and suddenly a plot unfolds in such a way that something happens and their courage is called forth and they go on a track to kind of find, find the, the gold, or to save the day, etc. But if I could just sort of say a little bit about what I mean, I gave a presentation here in our building to a group of fellow tenants and we had a lovely discussion about the four, as I see it, four directions that the aging as adventure could be understood in terms of. And the first is aging as an adventure outward. So many people when they reach retirement if they do have the chance to retire with some sort of pension, and lots of people don't nowadays we got to keep that in mind. There's that excitement. Okay, now that I'm retired I don't owe my soul to the company store anymore. We can hop on that plane, provided we have the funds and provided we have that we're fit, and so forth. Go to portugal, go to whatever country, uh, go on that cruise. Uh, take up line dancing or pickleball. Didn't have time for that when we were working and making our way in the world, but now that we're retired we can take courses on topics we've always been curious about and in that sense widen our worlds. And I call that aging as an adventure outward. But I think for many people, if they think of aging as an adventure at all, it's probably in those outward terms primarily. And that's great, except that I think maybe that's only the tip of the iceberg as far as the adventures that await us, I think, in later life.
Speaker 4:So the second direction I talk about is aging as an adventure backward. And if you recall from the narrative gerontology course that you would have taken back at St Thomas, we talked quite a bit about, you know, reviewing your life, writing your story, reflecting back. The Celebrating Our Stories program at York Care Center is a classic example of celebrating the life that we've lived, the experiences that we have under our belt, the events and the adventures that we've gone through, and that backward turning reflection is kind of a natural instinct. Anyway, many would say as we get older, okay, whether you actually write your memoir or you prepare a scrapbook or you do some of that, stepping back from your life and thinking back over the life that you've lived and hopefully coming to a conclusion that, all things considered, I feel okay about how my life is turning out okay. But the adventure backward leads into what I call the adventure inward eventually, because as we look back, we're also nudged to look in, and the adventure down memory lane is not always a happy little romp. Sometimes you discover things as you look through photographs or you read some letters from the past oh, I forgot about that event. That was difficult, that was hard. I've never really thought that through or worked that through. That trauma, that terrifying experience, that disappointment, that regret or whatever.
Speaker 4:The adventure inward is what I would think of as an intrinsically spiritualizing journey. Aging does invite us, nudge us, push us or whatever, to look inward, to ask the big questions why am I here, where have I come from, where am I going? Which are traditionally the province of religion and so forth. I don't think aging is automatically a religionizing process, but I think of it as a spiritualizing one, or a pilgrimage, which is a play on words, in the same way that the adventure backward is an anecdote age, ok. But then there's the adventure forward, which is a direction that we don't tend to talk about openly in in circles of older adults, and I'm part of one here in this building. But we did yesterday and I presented the possibility that that aging can be an adventure forward, even though you might think, well, what's there to look forward to? You get older and older, and older and older, and then you die. Well, possibly that could be the end of the story, but maybe not. And this gets us into interesting territory that I've been having a lot of fun in the last couple of years, particularly exploring literature on gerotranscendence.
Speaker 4:You perhaps have heard that term in your gerontological travels, transpersonal gerontology, which is a subfield I've just learned about, and a whole body of research on the so-called near-death experience, and so it's led me to think of aging itself as a nearing death experience. What do we mean by the near-death experience? Well, we're talking about the experience that millions of people have, or at least report having. Many have them but don't report having them because they don't want people to think they're crazy. But experiences where people have been technically dead on an operating table, whatever age they might be, gender, culture, background, religion or no religion. As a matter of fact, they're technically dead for a while and they go somewhere. Now, this is as many as 17 to 20% of people who have near-death scenarios have these kinds of experiences. So there's millions of people globally and there's a body of literature that I've stumbled upon.
Speaker 4:In fact, there's a center at the University of Virginia, which I visited last August, devoted to near-death studies, and I spent two hours and a half with one of the founding figures, bruce Grayson, who's a professor of psychiatry emeritus at the University of Virginia and great, because the elements of these near-death experiences include coming back from wherever you've gone, where, by the way, you feel incredibly loved, unconditionally, like you've never felt before. You feel like that over there, wherever that isn't realer than real. It feels like home and you come back changed. You come back transformed, particularly if you're able to talk about it and integrate it into your overall worldview, because your worldview is really challenged. It invites you to think differently about possessions, the pursuit of the almighty dollar. It invites you to think differently about the importance of acts of love and kindness and caring. It often comes with the experience issues and a hunger for learning and knowing, as if you know the other side is unlimited learning to be had and you come back wanting to do your homework, shall we say, and you come back, obviously, with a much decreased fear of death. This allies nicely with the theory of gerotranscendence, which suggests that as we get very, very old, we have a different experience of time, which is true for the near-death experiencers. For them, they feel like time past, present and future. These are arbitrary, human, earthbound distinctions that don't sort of apply on that other side, in that other universe, that other reality. In gerotranscendence, there's a decreased sense of it being about me, me, me, me. It's more about us, us, us. It's more about us, us, us. And the gerotranscendence also involves a much less sense of death being something final.
Speaker 4:My mother at 102, she passed away in November of 2023. And at that age you could imagine her just living in abject terror every minute. I could die just right now, because I'm 102. But she was focused on the now. Now because I'm 102. But she was focused on the now. Life for her on a daily basis was about getting and giving hugs to people in Windsor Court where she lived, and it was about making phone calls to all the friends that she had every night to tell them how much she loved them and cared about them. So that's, I think, an example I'm not trying to make my mother a saint but of what you could call the adventure.
Speaker 4:Aging is a nearing death experience. But in our modern Western world, that idea of aging as adventure it enemy, that we have to fight, that we have to delay, that we have to postpone. I remember there was a Zoomer magazine, which is otherwise a great magazine, had an anniversary issue a few years ago, the front cover of which had the two words defy aging. And I thought, ooh, ooh, ooh, embrace, embrace, aging. How about go into aging with the spirit of adventure? Maybe I'll write an article for them someday. Um, anyway, I'm so I'm.
Speaker 4:I'm suggesting that that we need to kind of twist the kaleidoscope around. See the pictures of the aging process, including the dementia process, which I'll say more, say more about in a more positive vein. I mean, in First Nations cultures, as we know, older adults are not seen as senior citizens but are revered as elders. That's been their tradition and they're revered as elders because elders have a degree in personal maturity. They've been through stuff, they have insight, they have experience, they have wisdom from which the rest of the community, younger generations, can benefit. So that's a long-winded response to your first question.
Speaker 2:That was great. I have so many thoughts and I'm just going to I know Jana's probably going to jump in with a question here, but just when you were talking about it, and this concept is to the narrative, you know, narrative gerontology experience, it's a framework to kind of make sense and meaning making of your life. And just when you were talking, I guess a segue with this example or thought that I was reminded of before. Jana, you'll ask a question probably specific to dementia individuals with a diagnosis involving dementia symptoms. So we have a dear colleague and friend named Jim Mann who was diagnosed with, you know, has been walking a journey with dementia for many years, a long time ago, and he was diagnosed at the age of 58. And he's been a guest on this podcast and a lot of the work that Jim does. Is he really, you know he's an advocate to kind of help to break stigma associated with dementia right diagnosis.
Speaker 2:So out there in the world, someone who is walking a path with dementia. They experience a stigma that isn't applied to other disorders or, you know, disease or something. And so the example that I guess just goes in line with what you're talking about, is this like the narrative of decline is that I remember um, on an interview that we did with him for the podcast, about a story of one of his friends at like the, the local, like his local golf club, and this gentleman um, that had, you know, had always kept the score in the golf game. You know, for the club of like the golfers, and stuff had always been like the person that was like on top of it, and the person got diagnosed with a form of dementia and all of a sudden, you know, all the people in the friends at the golf course didn't want them to take the scores anymore and so it's like taking that, and so you can see how the internal narrative could develop based on the world outside right, like the people.
Speaker 2:Not only do we tend to kind of fall sometimes into that narrative decline, but it's because of also the contributions of just the outward world right and, like you mentioned, media and so on. But it's even you know, people in our communities right that have those same narratives and anyway I digress, but this is what made me think of, you know, people in our communities right that have those same narratives and anyway I digress, but this is what made me think of, you know, when you were leaving. So this is a different framework to kind of right.
Speaker 4:There was a professor at Yale divinity school named Janet Ruffing, and we had give a lecture here at a stew a few years ago. She's a Catholic nun and is an advocate of spiritual direction, but she has this wonderful line that I'd like to quote says it matters how you tell the story. It matters how we tell the story of ourselves as we get older. It matters how we tell the story of aging per se. It matters how we tell the story of what dementia is, and I think there's a potential not being an expert in dementia myself there's a potential for seeing putting the water on the beans in a different way when it comes to understanding what the dementia journey is.
Speaker 2:It just occurred to me as well, bill, that there's a colleague, a former colleague, a late colleague of yours, that we all knew very well, who pretty much did this his dementia diagnosis was a great adventure to him and that's Leo Ferrari.
Speaker 1:Bill, you so beautifully outlined the many different ways and directions all of us can experience adventure, particularly as it relates to aging, and I'm wondering if you can share a bit about how you relate the idea of aging as adventure to the day-to-day realities that are experienced by people living with dementia and their family and friend care providers.
Speaker 4:Yeah, a quick little anecdote that's triggered for me when I think about that question is I remember when I was a United Church minister in Gravelburg, saskatchewan, prairie Town, and I would go to the nursing home on a regular basis to visit some of our parishioners who were there. Who was a feminist before her time? She was an NDP advocate, she was a farmer, rancher and just an all-around live wire person with a great sense of humor, but she developed dementia, I'm not sure what variety, but she would greet me often at the door into the nursing home part of the hospital and she would stand there with a big beaming smile on her face.
Speaker 4:Ah life's quite a journey, isn't it? And I thought, yeah, well, good for you, annie. Yeah, life is quite a journey. Later life is quite a journey too, or an adventure, as I'm calling it.
Speaker 4:One of the things about the aging as an adventure, inward and forward, that you may recall from your introduction to gerontology student days is that aging can involve a degree of disengagement. Now disengagement theory has gotten a bad rap within gerontology generally for lots of understandable reasons, but I think we've got to be careful not to throw out the baby with the bathwater, because I do think that aging generally, as we move in that inward direction and the forward direction, does involve a degree of disengaging or of letting go. And we see this happening when older adults move from their homes to an apartment. They have to declutter, they have to downsize, they have to let go of stuff, and that can be a very painful process and you need, maybe, professional help to help you go through all of your possessions and say, well, I can keep this, but I can get rid of that. You know, because this has special significance for our family, etc. Aging helps us to let go of is some of the illusions that we have labored under about ourselves about how our bodies are going to always be there for us and do exactly what we expect them to do, or how our egos are always going to be in demand, or how you know we're indispensable in some way. Aging has a way, god love it, of humbling us, of bringing us down to size, literally. I mean we become more down to earth as we get older, you know technically three, four or five inches shorter than we were in our prime. So I think that there's this. We need to kind of keep that in mind.
Speaker 4:I have some random thoughts here. Forgive me if I don't have it in some sort of a coherent sequence, but here's maybe, where dementia plays a part in that letting go process. Maybe, just maybe no expert on gerontology here, but maybe dementia, the journey of dementia, is nature's way of kind of accelerating the process of letting go which aging is going to do anyway for us. And here's I'm drawn to the words of a poem by the singer-songwriter Rebecca Del Rio. She has this interesting poem called Prescription for the Disillusioned, but there's one section of it that I want to just share with you and your listeners and it may stir up some thoughts.
Speaker 4:She says leave behind the stories of your life Spit out the sour taste of unmet expectation, let the stale scent of what ifs waft back into the swamp of your useless fears.
Speaker 4:Arrive curious, without the armor of certainty, the plans and planned results of the life you've imagined.
Speaker 4:Live the life that chooses you new every breath, every blink of your astonished eyes. So this process I'm not saying that letting go or leaving behind our stories is easy for us to do or easy for spouses or family members to witness, because for the loved one looking on, it can seem like the loved one who is journeying with dementia is drifting off before your eyes, which is why we sometimes call dementia the long goodbye. But maybe many persons with dementia are in the middle of this otherwise natural process of letting go of their egos, of their selves and maybe also of their stories. So in that sense dementia is a process of de-storying or unselfing and in that sense maybe enables a person to live more in the moment, which is what we strive to do when we go to mindfulness meditation courses. And then one source writes, for example for the person with dementia the world is entirely here and now, and that jibes nicely with gerotranscendence, by the way. So there's a couple of thoughts that come to mind.
Speaker 2:When you were reading the beautiful poem and I was in that whole topic and again, I'm not going to try to quote it because it's I won't get it right because it's been many years, but it might be useful for you at some stage if you're doing a little more, you know, focus on specifically areas like little pockets, like dementia. Around this concept, bill, there's a lady by the name of Christine Bryden. She is from Australia and she was diagnosed with early onset dementia I believe Alzheimer's many years ago and she's written several books. So the book that I, ashley, my co-founder and I we always love, we've referenced it many times over the years. It's one of her books is called Dancing with Dementia and there's a quote in the book Christine talks about that exact. It's essential.
Speaker 2:I'm not going to try to quote it, but it's like people with who are experiencing dementia are traveling a path essentially to connect to the very most real versions of themselves. Is is the concept. So I won't quote her, but I it's very beautifully written that book and she has other books as well and, yeah, it's quite a quite an advocate and a a well-known leader in the dementia space, for sure in Australia but around the world. Anyway, I thought I'd throw that out there for you, but also listeners. Christine Bryden, we can maybe link her website.
Speaker 1:Something that strikes me, bill, is. I feel like a lot of people would think how can I be adventurous when I'm aging and I'm frail and weak? And it makes me think of my grandmother, who is almost 90 and she has dementia and still one of her taglines is this getting old isn't for sissies. And when you know, people laugh because she is a funny lady. But the strongest people I know, or I have come to know it throughout my life, are the older adults that I've had the pleasure of knowing are so strong and you can still have adventures during the process.
Speaker 1:So that's just something that, a thought that came to my mind as you were speaking because I I know that people would just sort of look weirdly at themselves and not see themselves as strong enough for adventure I think if there's anyone strong go on an adventure, it's an older adult yeah, they're dealing with unpredictability and uncertainty and possible danger and loss every day, and that's what heroes and heroines are historically, you know, known for doing.
Speaker 2:Well it's just such a theme of themes of resilience, right, like yeah, so just I'm going to shift gears for a sec just to ask. It's going back to the concept bill of the aging as an adventure backwards and that's the reflective piece, right, that you talked about, which can lead then to, of course, the processing of life events and things like that. And so, specifically, I guess, how do you think, how can we think of that concept of aging as a venture backwards, so the reflection, all that, for those who tend to fade a little more as their disease progresses, let's say, if they have a diagnosis of Alzheimer's disease and they aren't able, so how can we think of that, as I guess, yeah, how can that happen?
Speaker 4:Well, let me just step back a bit from what I said about dementia and letting go, or as a process of de-storying, and just make a few points in no necessary order. Okay, one point I want to make is that, although persons with dementia may be less and less able to tell us their stories in the ways that we're familiar with them telling us their stories, they're still, I would argue, biographically active. They still have what my colleague, clive Baldwin, would call narrative citizenship, which means we have to be careful of narratively dispossessing them and thinking of them as them as opposed to us. Because another point I want to make is that actually, the dividing I've always thought this the dividing line between normal autobiographical memory and the memory of someone who's living with dementia is not such a sharp divide. There's many ways in which normal autobiographical memory, which helps us to maneuver through the world with a sense of self, is fuzzy, it's kind of jumbled up, it's selected. We pull out certain things that have happened to us and build our sense of identity around them and kind of effectively forget all kinds of other things. Uh, in fact, I want to say a bit about forgetting, and we think that forgetting is, uh, you know, just a terrible, terrible thing. But in fact, uh, life as we live, it would be on an everyday basis, would be impossible if we couldn't forget.
Speaker 4:And this makes me think of an interesting book called the Woman who Can't Forget, which tells the story of Jill Price, a woman who suffers from a rare condition called hyperthymesia or the other phrase is highly superior. Autobiographical memory H-A-S-H-S-A-M. And this person and persons like her, can't forget stuff. They walk around with memories flooding their mind constantly and details of things they experienced in teenage years and previous parts of their life. They're unable to kind of screen stuff out. They remember too much and, as a consequence, in that book you'll see that this woman admits to having a real difficult time managing an everyday life. Uh, so, um, you know the the value of being able to selectively remember and to forget or kind of push off into the edge a lot of stuff that we technically might be able to remember is really that's really important. You've heard of Elie Wiesel, survivor of the Holocaust, and he lived through the horrors of Buchenwald and Auschwitz, and he wrote in one of his autobiographical pieces he said I would go mad if I remembered everything. So that's one point I wanted to make.
Speaker 4:And then that leads me to think about the work of Anne Basting, whose research I'm sure you're familiar with. She's a well-known dementia researcher and spokesperson operating out of the Midwest in the States, and she's written a book called Forget Memory Creating Better Lives for People with Dementia, and she warns us against having a single sort of tragic storyline of dementia or having what she calls a too tightly told tragedy of dementia that blinds us to the mystery, the honesty and even the beauty of the dementia journey, or what my colleague, mark Freeman, a narrative scholar in the US, refers to when he writes about his mother who had dementia for a number of years. He refers to dementia's tragic promise. There's another point I wanted to make, and I'm sorry for rambling here, but you well, you know far better than I do about the biographical activity that's still there and that can be accessed for persons with dementia through music, music and memory. I loved looking at that little six-minute video called Alive Inside Henry, that African-American gentleman who otherwise seems to be in a stupor. They put this whatever you call it playlist headphones on his head and suddenly he's alive. He's taken right back to the years of his youth when he loved big band music and dancing. He's actually able to talk in that interview.
Speaker 4:Art Gary Kenyon's work using Tai Chi, augur Sinus, using poetry with people who are living with dementia to access memories, maybe not in an exact kind of way, but in sometimes a metaphorical way, which reminds me of another Australian writer, a nursing professor named Jane Crisp, who's written about her mother, who she took care of, I think, in her home while her mother was living with dementia, and she learned as she listened to her mother's confabulations which is one word that we use or stories that sort of.
Speaker 4:Didn't ring true with what Jane Crisp knew her mother had gone through, but she learned to listen to her mother's stories as if they were what she calls waking dreams. And in listening to the stories that her mother told in a more mixed up kind of way, there were themes and metaphors and images running through what her mother told. In a more mixed up kind of way, there were themes and metaphors and images running through what her mother was saying. That helped Jane, enabled Jane to see that her mother was making sense in her own sort of way, in the sort of way that maybe our subconscious and this is, I'm really way out on a limb here folks, in the same sort of way that maybe our subconscious does or tries to do every night, when we go to bed and we dream.
Speaker 4:I don't know about you, but last night I had a bunch of wild dreams and I don't know where those dreamscapes came from and it's like every night, when I put my head on the pillow, I enter the world of dreamensha, which is a phrase I kind of like. I don't know what you could do with that. But coming back to the stories that we tell about our lives when our cognitive capacities are doing fine, the stories that we like to tell that we know they're going to get a good response from our audience, let's be honest, they're not always, you know, 100% accurate. We embellish certain facts and we forget others and play down certain things for the sake of telling a good story. Why let the facts stand in the way of a good story?
Speaker 2:So again, the dividing line between normal memory and normal remembering and normal storytelling, and that of the storytelling and the remembering of persons with dementia is not a hard and fast divide, in my humble opinion a hard and fast divide in my humble opinion, and some of the things that you know you just gave a whole bunch of different examples that were, you know, definitely touched on different theory, right, but the practical thread in those is that creative expression, be it art, be it tai chi, be it music, be it something like that, is a really good tool.
Speaker 2:You know people who who maybe are finding you know limitations in terms of accessing like, but like those, all of those things that you mentioned in your examples are all those are all proven right to ways that people can access um, memory or you know meaning making um, and it kind of transcends the day-to-day like dialogue or you know like, because it is creative expression yeah, that makes me think of your work bill on narrative care, which we know that you've done very extensively in the past, and even reminiscence and how, that adventure that one could go on with loved ones living with dementia who may be experiencing memories of the past, and we could take the opportunity to go on an adventure with them into the past.
Speaker 1:That is their current reality, but might not be ours right.
Speaker 2:Just the opportunity to go there with them into the past.
Speaker 1:That is their current reality, but might not be ours, right, just the opportunity to go there with them. So I'm wondering, if I'm wondering how family members and caregivers can care for people living with dementia in ways that are, I guess you could say, more adventurous.
Speaker 4:Yeah, that's a great question and I don't have any sort of authoritative answers, but a few thoughts that are triggered for me. I'm convinced more and more that as we age with or without, dementia we can benefit from we need story companions to walk with us on the journey. Story companions to walk with us on the journey. We had a great time yesterday afternoon here in the building where I live. I was sharing with a group some of these ideas about aging as adventure and we got sharing stories and I think some of the people realized it would be good to have conversations around the table over coffee where we go a little deeper with one another as we journey along the aging path together and rather than just sort of focusing on our ailments and our medications and so forth, but talk about our lives and our stories and our past and so forth. So the idea of story companions is one that I really like. So narrative carers are people who walk with us, whether we have dementia or not.
Speaker 4:The other thing I want to mention I'm sorry if I'm jumping around is that and you may remember this from some of the narrative gerontology courses we are social creatures. We co-author one another's stories within families. You know I can't tell my story about me without telling you something about my sisters, about my mom and my dad and the same for them, and so our stories are entangled in many intimate kinds of ways, which is one of the sad things about caring for someone as a family member or a spouse of someone who has dementia, because you're entangled with them. You have a lot of we stories as maybe a couple or whatever that they, the person with dementia is not able to tell or maybe even remember. So, as they, as they seem to drift off, you can feel alone and it challenges your own story about who you are. So there's a restorying process that family members, I'm sure, go through, and you know more about this than I would.
Speaker 4:I like this idea that we all live in our own little world. We all live in our own little story world, whether we're walking with dementia or not. The world of Bill Randall story world is different, feels different to me, feels different to other people than the world of Janet Jones does. Story world is different, feels different to me, feels different to other people than the world of Jana Jones does story world of Daphne, noonan or whatever, and it's just different. Mine is just different from yours, as a novel by Salman Rushdie or Ernest Hemingway is from a novel by Margaret Gravel or Iris Murdoch, to use that kind of parallel Same with the person with dementia.
Speaker 4:So, and you wisely suggest, jana, that when you're interacting with someone who has some degree of dementia, you kind of go with the flow, you don't try to wrest them back from what they're, the reality that they're seeming to live in, say no, no, today is Wednesday and it's 2025, and the weather outside is dismal or whatever. Uh, you go with. I'm reminded of Mrs Jacobs. When I was a minister in Gravelburg there was a Lutheran person, woman I used to visit, um on my list and she was in. She was very much in the world of dementia. I walked into the to her room one day where she was living and and she was all a fluster at age 87 or whatever, because she said, the horses are getting out of the barn and I don't know where they are.
Speaker 4:And I realized that she was. Her reality at that time was back on the farm, uh, when she was a young mom with a couple of babies and so forth, and her husband was out in the field and the cows got out of the barn or whatever. So I had the presence of mind to say, okay, well, what, what would you like me to do, you know? And uh, anyway, eventually she settled down and I don't know what kind of conversation we had, but I mean, our, our, were, our story worlds are so unique and so different and they change the world of dementia itself. It changes our story worlds, I suppose, and maybe brings out aspects of our personalities that in previous parts of our lives we filtered out or we kept the lid on or whatever. And this is one of the honesty aspects that you would know more about than I do that can accompany dementia. You see different sides of your loved one that sometimes can be troubling or, alternatively, sweet, and maybe that's part of the nature's way of kind of helping us to, to become more who we really are and to integrate, hopefully, the different sides of ourselves and feel still loved and accepted.
Speaker 4:I want one. I want to say one final thing. I see our time is maybe getting tight here, but have you heard of a phenomenon known as terminal lucidity? No, and, by the way, think of this against the background of gerotranscendence, which is the process of aging taking you through kind of a gradual transcending of ego, transcending of self, with a capital S, a coma for weeks, maybe months.
Speaker 4:People who have been in advanced dementia for weeks, maybe months, suddenly snap out of it within days or even hours of dying and are quote unquote perfectly normal, able to have a conversation about what's going on with the lives of the people, standing around in the room with them oh, yeah, ok, how's the farm going.
Speaker 4:And then, shortly after that amazing kind of surprising lucidity that they manifest, they die. This has been explained by some of the researchers in the near-death studies field as perhaps an example that our brains contrary to what we think within neuroscience, our brains are not the producers of consciousness so much as they are the reducers of consciousness. A wonderful book called Consciousness Beyond Life by one of the leading near-death experience researchers. It suggests that our brains functions like reducing valves to protect us from being overwhelmed by consciousness at large, or mind at large, as one writer says, and as our brains lose that capacity to filter out that wider reality, which near-death experience is a good sense of, we're able to appreciate and see and experience a bigger reality, and my idea of aging as an adventure forward has to do with moving towards that bigger reality, that larger light, which I know sounds like a religious concept, and it does ally nicely with many themes and major world religions, but it goes beyond theology per se, I think, and it questions our understanding of the universe itself, the nature of reality.
Speaker 2:And I think it's again I keep going back to like just, I mean the practical. It's a framework, it's a different way to try to process your life experience and you know, in this idea of looking at it as adventure, looking at it as forward, it just provides people with kind of a set of way of thinking in order to process what can be sometimes a very difficult situations. You know that they're in right.
Speaker 4:Maybe dementia just way out on a limb here. Maybe dementia is. It gives us a head start on a process that we're all going to be taken through anyway.
Speaker 2:Yeah, one thing you maybe again I'll mention it because our listeners might find it useful as well, but for you as well, bill, and we're really hoping soon to be able to have this individual come on the podcast. There's a colleague that we've met in Georgia who works at Georgia State University, who's doing some really interesting work. It's still quite early, I think, into the research, but this aligns very much, I think, with what you're talking about as kind of that lens of adventure and, I guess, a little bit of unpredictability and whatnot. So the lady's name is Candice Kemp, dr Candice Kemp, and she is doing some amazing work with caregivers of individuals who are living with dementia. You know, people who are helping to care for a loved one or a friend, and it's using the principles of improv, improv theater to be a care partner to someone. Think about it.
Speaker 2:It's a very similar kind of you know vibe of like it's that thing of being able to just go where the road is taking you and to respond in the moment to, you know, things that can be a little bit unpredictable, and you know again, adventure that you maybe do or don't want to be on, and you know again adventure that you maybe do or don't want to be on.
Speaker 4:I like the improv concept. It goes nicely with the work of Anne Basting for the Time Slips program. I want to just end my crazy comments with one other thought.
Speaker 4:One of the leading figures in near-death research is Raymond Moody, also from Georgia initially, who wrote a book called Life After Life. That started the whole thing back in the 1970s about the near-death experience and interest in that sort of phenomenon. But he's written a book where he talks about how people at end of life and he could also, I say I suggest you know, include people who are living with dementia frequently talk what we might think of as nonsense. But he says I say I suggest you know include people who are living with dementia Frequently talk what we might think of as nonsense, but he says you know, we need to think in terms of people who are close to dying per se. He says let's call that perimortal or cross-dimensional nonsense Again using that word nonsense with inverted commas and he says the.
Speaker 4:He says the kind of things that people say and there's books that have been written by hospice care providers that say listen carefully to the things that people say near the end of life, because it may sound garbled and weird and strange, but there may be metaphors and images and insights that the person is arriving at because they're on the border. And he says just that such language could be a window into transcendent states of consciousness, or what other people call non-ordinary states of consciousness, which the mind produces, he says, when it switches between different frameworks of experience this life, the bigger life, so these are these are ideas, folks, I'm just playing around with these days.
Speaker 4:They get me quite excited and they're helping me personally and with the folks I talk about these ideas to, to get a more energized sense of what the aging journey is about, and I hope that some of these ideas will resonate with your listeners and we'll we'll let's keep the conversation going.
Speaker 2:Yeah, Do you have? I guess it's kind of like a one and two last questions for you before we conclude. But I guess, before we ask that question, I guess what I would say is you know, as usual, coming in, you know, having you on the podcast or just in general chatting with you, it's, it's just like having a coffee chat, right, Like you, you're coming with all these different you know ideas and different, and so don't ever apologize for saying that you're you're taking um sidebars or anything like that, because that's one of the amazing things we love about you. And, uh, it's, it's, it's just kind of, again, that food for thought of, like, different ways to look at things and different ways of processing our, you know, human experiences is what I think you're so good at, you know offering. So I guess, as we wrap up, is there anything from all of the wonderful analogies and metaphors, concepts, that you shared today, anything that you'd like to add or something that you would really like to reiterate for the audience?
Speaker 4:yeah, well, one is that adventure as I'm defining it, and that's. I'm not a literary scholar and literary scholars would have their own ways of defining that type of literature. But an adventure is about going outside of our comfort zones, whether we want to or not, and life is going to do that anyway. Birth is going to do that anyway. Take us outside the nice warm, cozy womb out into the big wide world, and maybe that's what death does as well. And dementia is part of the journey of life we didn't have.
Speaker 4:When I was growing up in Harvey Station, which apparently has had one of the highest rates of incidence of this condition, we didn't have that word. And I remember working with a chap who had what now would be called dementia, working with a chap who had what now would be called dementia and he was in a different world but he was delightful, and we just kind of rolled with the, not the punches, but we went with the flow and accepted him as part of the community, a little different, but that's it. Maybe, you know, dementia is not some sort of inferior state of mind or perspective on life in the world, but different. And life is about appreciating and honoring and celebrating difference. And so I think to me you've taken me outside of my comfort zone today by asking me to cobble together a few half-baked thoughts, but it's taken me to a new place and after this conversation you've got some things I want to read, and I hope we'll have more conversations. You teach me as much as I might share with you.
Speaker 2:Thank you. I'm going to give the last question to Jana, because I know she loves to ask this one.
Speaker 1:Well, thank you so much, Bill, for encouraging us and our listeners to think differently about a myriad of things that you've talked about over this delightful conversation. So thank you again so much for joining us for the second time, and I'm going to ask you this question, which is a question that you were asked last time. You were on the podcast, but perhaps you've reflected differently on what your answer might be based on the year that's gone by since that time, but what is your hope for the future for people affected by dementia?
Speaker 4:I I hope that we can get away from our us and them thinking and paternalistic thinking, all those poor people that we can honor. What wisdom, however it might be expressed, that we each have to share with one another and to be story companions with and for one another as we walk this journey of life. God knows, in our world nowadays we need companionship that we can trust and we need to feel that we are loved and honored and respected as we are.
Speaker 2:I thought I was going to get through without crying Bill, but you got me. Let me end.
Speaker 4:Thank you. You're doing great work, folks, keep it up.
Speaker 2:Oh, thank you. Well, we appreciate you. You're very dear to all of us at Person Centered Universe, so thank you for being here with us.
Speaker 1:Thank you for joining us for this episode of the Redefining Dementia podcast. We hope the insights shared today leave you feeling empowered and connected, no matter where you are on the dementia journey, whether you are living with dementia or you are a care partner, a professional or an advocate. Together, we can continue shifting the conversation.
Speaker 3:This season. We're grateful for the opportunity to bring you new voices and perspectives. As always, we strive to offer practical tips and heartfelt stories that resonate with your experience.
Speaker 2:A huge thank you to our incredible guests who generously share their time and knowledge with us, and to everyone behind the scenes. Our music is written and produced by Scott Holmes, and this podcast was produced by Jana Jones. Be sure to subscribe so you don't miss our upcoming episodes. And, as always, let's keep redefining dementia together.
