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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
Rahzeb Choudhury: Volunteering, Narrative Care, and Connection in Dementia Care
How can the simple act of sharing a story or making a meaningful connection transform the dementia journey? In this deeply moving episode, we’re joined by Rahzeb Choudhury, co-founder of True Doors and a lifelong advocate for compassionate care. Rahzeb shares his journey from volunteering to becoming a leader in social enterprise, weaving together his passion for narrative care and the profound power of human connection.
Through his reflections, Rahzeb reveals how understanding and celebrating individual stories can help create environments that foster belonging and joy for people living with dementia. His work with True Doors highlights the importance of personalizing care spaces to honor the identities of residents, bringing dignity and a sense of home to long-term care settings.
Rahzeb’s heartfelt perspective reminds us that the essence of care lies in the connections we nurture. Inspired by Christine Bryden’s Dancing with Dementia, he discusses how rediscovering our core selves—unburdened by life’s distractions—can open pathways to meaningful relationships. From the role of volunteers in breaking down barriers to the healing power of kindness, Rahzeb illustrates how even small, intentional acts can have a transformative impact.
We also explore his work with Lifelong Inspiration, where initiatives like the One Page Profile Masterclass and Tai Chi practices bring creativity and calm to care settings. Each of these projects is a testament to Rahzeb’s belief that care is about more than meeting physical needs—it’s about creating spaces where every person’s story is honored and celebrated.
This episode is a heartfelt tribute to the importance of seeing the individual, fostering connection, and embracing the narratives that make us who we are.
Links Mentioned in the Episode:
- Connect with Rahzeb Choudhury on LinkedIn.
- Learn more about True Doors.
- Explore Dancing with Dementia by Christine Bryden.
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 to Redefining Dementia. Today. I'm honored to introduce our guest, rezeb Chowdhury. He is a close friend and mentor to those of us at Person Centered Universe, and Rezeb's journey in dementia care is both deeply personal and purpose-driven, and is shaped by his years of volunteer work in long-term care and his dedication to fostering connections that honor each person's unique story.
Speaker 1:As the co-founder of True Doors, rezeb has created a social enterprise focused on helping people feel at home in care settings. His philosophy on narrative care is beautifully expressed here in this episode in his own words when he says anywhere in society, strong people should make time to care for vulnerable people. In this episode, daphne and Ashley sit down with Rezeb to explore how his volunteer experiences have shaped his approach to empathy, presence and the power of simple connections. Together they discuss how person-centered care in supportive environments can make a world of difference for individuals living with dementia and their care partners. Join us for this inspiring conversation on the strength of community, the importance of seeing beyond the diagnosis, and Rizev's insights on the role of volunteers in creating a true sense of belonging.
Speaker 2:Good morning.
Speaker 4:Good morning.
Speaker 2:So good to see you and be able to spend some time with you this morning.
Speaker 4:Oh, it's really my pleasure. Thanks so much to both of you for inviting me today.
Speaker 5:We're really excited. So welcome Rezep. We're so excited to have you join us today. Thanks for coming. So why don't we start by having you tell us a little bit about your personal volunteering journey and how those experiences have shaped your view of people living with dementia?
Speaker 4:Let me think now. I actually think my volunteering journey started 10 years ago before I formally started volunteering. But 10 years ago I started working on a project, a social art project, which became a small social enterprise called True Doors. And the reason we were doing the social art project was to just do life story work and look at people's and learn a little bit more about people's stories, about people feeling at home as they moved from living independently into assisted living here in the Netherlands. And that was also then my introduction to people, bit by bit introduction to people living with dementia and over the last 10 years my interaction or my involvement with the kind of I don't know, I'm really bad with knowing what the term would be, but you know, elder care space or senior living, long-term care, aged care has just increased and it's become, you know, know, pretty much close to daily part of my life, especially with the volunteering I'm doing it more often. This idea of helping people to feel at home has really just stayed at the center of my motivation for being involved and I think that's really what volunteers are able to offer in long-term care.
Speaker 4:I think that oftentimes the staff are under a lot of pressure to get things done, things done. There's a lot of change in the space, which is sometimes it can be just challenging for people who work in the space to devote the time that they might want to to provide individual support, and I think that volunteers have an important role in providing that support. Volunteers have an important role in providing that support. But actually the volunteering journey right now for me it's not actually so altruistic. There's also something quite selfish about it because I feel like I get a lot from it and, knowing that I was going to talk today, I found myself trying to crystallize in my mind what that might be. I could describe it clearly, and it starts actually with just something that I decided a while back, which was that I feel like anyway in society that strong people should make time to care for vulnerable people, and so that personal philosophy guides my kind of makes me be open to the idea of volunteering. But the selfish part is that actually I feel like oftentimes in as I go about my day, I have to be a little bit more guarded than actually at home with my family, with my loved ones, whereas when I'm volunteering in a nursing home, I don't have to do that, I can just go in with a really open heart and how I find people at that moment is how I find them and how they find me at that moment is how they find me, and we can just have like a really open-hearted connection that we make, without any kind of cognitive filters or any other kind of pieces, where I don't know if I feel sometimes like you know, you, you need to have your barriers up in society and and right now I'm volunteering twice a week actually in the mornings, and it's two times a week when I know I'm not with my family but I'm with other people's family members, let's say and I can just be really open-hearted and make a connection. It lasts for a few seconds sometimes, uh, but it really uh is just helpful to me in terms of my soul and the interactions with people who are really, you know, people who don't have worldly worries. They're really quite poignant.
Speaker 4:You know, a couple of days ago I was holding someone's hand and she was saying I'm not needed anymore and she was saying I'm not needed anymore. I thought that was so powerful, you know, I'm not needed anymore. And then we held hands and she said a bunch of stuff and I said a bunch of stuff. Then after a while, she sort of said but it's good that we're holding hands, and I found you. And then a little while later, you know, she offered me coffee. I thought it was great, and then, you know, I had to go and make the coffee. So we had this wonderful kind of connection where in her day, you know, she was feeling like a lack of value because she wasn't needed. But then, just from some, you know, I was able to hold her hand and we enjoyed just that tactile contact.
Speaker 4:The story of the day evolved, you know, to, you know glad that, enjoying some connection with somebody, so simple, you know, just listening to someone holding their hand. And then a little bit later, you know, she wasn't feeling like, you know, she wasn't needed. She was offering me coffee, which I had to get myself, and just that flow. You know, I've been happy from that flow for a couple of days, you know, even with all the doing that I have to do every day, from morning through the day and into the evening. Um, so, uh, yeah, I'm not sure about that, I have, uh, any kind of, you know, conclusions about what I, how I view people, you know, about how I view people with dementia, you know it's well. I guess I mean implicit in that there are some conclusions, right? I'm not. I'm not seeing a person or people based on a diagnosis. I understand that they're frail, you know, psychologically and physically for sure as well oftentimes, but that's not the definition of this person, you know. I mean, over the last year and a half, this person, you know that was holding her hand.
Speaker 4:She's told me stories about, about. You know, she's one of 19 children. They then, of the 19 children, they only had one bike, so they used to rotate this bicycle. One of them would use it each day. Um, and then you know she's in her late 90s now. She was married to a horticulturalist and has lived in the States, in Asia, in the UK, and now is living in the north of Amsterdam. She's led this rich life. She's a devout Christian and all these things are important because I can see in little moments that all these experiences do come out, although it might not be a coherent narrative as we would experience or expect from people day to day. Yeah, okay, I could ramble, of course, but I'm going course but maybe that's helpful.
Speaker 4:I don't know.
Speaker 2:No, it's very helpful and I had a lot of thoughts as you were, as you were talking and you reminded me, I have to go back and find it and send. I'll send it to you because I feel like you would probably really enjoy. There was a book that Ashley and I often used to reference years ago when we first started our business and we were often interacting with people on the dementia journey and helping to teach staff. It was written by a woman in Australia who had been diagnosed with dementia. Her name was Christine Bryden and the book was called Dancing with Dementia, and she spoke in the book a lot.
Speaker 2:There was a quote that again is escaping me right now, but the concept of what exactly? What you've just described is like that individuals who are walking a journey with dementia are actually on a journey to actually reconnecting to their, their soul really is what the perspective that she offered. So it's the you know this the absence of all the worldly, you know, clutter that we, you know, occupies our minds and our lives and in a day-to-day basis, and actually creates, you know the positive aspect of it is a day-to-day basis and actually creates, you know the positive aspect of it is, you know creating this space to kind of connect in it, you know, be in the moment and be anyway. So I just I think it's actually so beautiful that you, you know you share that perspective and and the other thing that I thought of was that when you were talking was, you know, it's just because you, as you shared, you started out kind of having no experience really with that.
Speaker 2:You know the world of aging care or you know being involved and then, through your, your business, you did and it's it's, but it's not unlike a story of many. Many of us who do come to work in long-term care have a similar story that we kind of stumble upon it but then you, you fall in love with it. Right, it made me think, yeah, a lot of what you said just gave me themes of stillness and thinking about, you know again, just being authentic and in the moment. So I love that. It's really really great that you're sharing that part of yourself with, with others and and finding that space thank you yeah, so how you kind of touched on this a little bit, um, but I guess you know.
Speaker 2:Is there anything that you would say, either whether it's a story or just you know any like, I guess, further insight on how those volunteering experiences that you've had, in all the variety that they've come in the last few years, how has have those changed your view or shaped your view in any way about the?
Speaker 2:You know caregivers so the care partners who say the family members of a person who are living with dementia. So you know caregivers so the care partners who say the family members of a person who are living with dementia. So you know, obviously your volunteering is taking place in a long-term care home but you know, before they residents arrive there, you know they're often, you know they have care partners that are their family members and care for them at home and then they obviously transition into long-term care where the caregivers become an expanded team of actually staff. And I guess yeah, I guess you touched on staff and I'm just also wondering if you know of all the caregivers, whether it's the family members of the residents or the staff themselves, have you had any sort of perspective shaping experiences?
Speaker 4:So my first experience is through staff, as caregivers, and then actually during COVID.
Speaker 4:My dad was diagnosed with vascular dementia and I'm here in the Netherlands, my mom and my brother are nearby in London he's now passed away but when they got the diagnosis, so I then experienced a couple of things noticing the challenge that they faced day to day in seeing my dad, you know, decline cognitively, and then the kind of challenge of this feeling that I had of struggling being, you know, here in the Netherlands and not being able to make it over, especially during COVID times, to see my dad and provide support to my mom, my brother, who were there more on hand. So the first thing is really just respect, because it really asks so much of you to see somebody change very quickly and while you're processing that change, you're also having to, you know, handle the the fallout of change that you didn't ask for, right. So that the first thing is just the level of respect I have, especially for family members who you know have to divert, you know, their own plans, to understand how time-consuming it is to provide somebody with love and support.
Speaker 2:Yeah, with love and support.
Speaker 4:Yeah, and I think that the thing that I really know is and it comes back to, I mean, I'm fortunate in the. I feel like I already had preparation, just because I'd already been involved in the space, but I was surprised, you know, that I hadn't experienced, of course, the personal. You know what happens when you've got something personally involved. But one thing that you know, really, it's a continuation, right, because I was already aware of this idea of narrative care. It's the importance of the story of a person, and so I was lucky, I was able to actually share that with my mum, my brother, and fortunately they were able to stay relaxed which I found quite a trick, you know, to be able to do that and playful, and so they were able to not get caught up in the whole diagnostic and medical side or the deterioration side, but could try to find ways to interject fun things that make sense to do, continuing interests and, yeah, I see that now also.
Speaker 4:I see the home where I go to to volunteer. I see that in the mornings a couple of the guys will be moaning, they'll be moaning that you know, it's just the same, there's nothing to do, and then you know, of course, I might suggest something to do, but they don't want to do that. And then of course course they're looking forward to, uh, the wife usually, sometimes the children who are coming in the afternoon, and I really see the the value of that love and that continuing connection. So although people have moved into long-term care, that connection with the family stays very important.
Speaker 2:Yeah, it's one thing. Sorry, I'm just going to.
Speaker 2:I'm interrupting you because, you know, just having that last statement that you just made is really is so true, right, that and I guess, as you're talking, I'm thinking about, you know, the shifting of roles along the journey, right For the caregivers, the family caregivers or family and friends, is that there is a journey for them as well, right, and that it's often, I guess, the you know the ability to kind of rediscover what the you know themselves within that role along the way, that becomes, I guess, helps to shape the strength in people, is what I, you know, see that you know, when they move say, someone, a loved one moves into a long-term care home, the care partner's role might change but there's still obviously so much value that can be brought.
Speaker 2:And I guess the themes of narrative care is, you know, it's something that in my experience and I it sounds like yours as well it's the thing that someone can actually do that they, you know it's, it's like something that they can practice or share that experience of you know, a narrative perspective or in doing, you know, looking at life stories or something that can actually be, it's a thing that can be very practical, that they can do in oftentimes when their role as caregivers is now changed and they may be feeling a little helpless or something you know. Do you know what I mean?
Speaker 4:it's I understand, I mean the. Actually it's kind of freeing, but the free freeing can be a problem, right. You're freed of the need to do thing these things to support the care need. You know that, the medical need or you know, yeah, but you're there for the quality time. But it can be quite difficult to know what, how to make that quality time happen, right. But it's actually quite, I mean not to, it's kind of simple right, just you being there, being um, kind of actually being there, not just physically, but just with your attention, seeing what's what that person's, who you're, how you're connecting, how you can connect with that person, your loved one, at that moment in time. You know whether it's, uh, you know you see it from, or you hear it from what they're saying, or see it from their face, the gestures they're making, the mood that you might recognize, uh, that I mean all the ways that you can read what's going on right and how you could connect with a person.
Speaker 4:Yeah that's right. Yeah, you're absolutely right. Yeah, I mean, I was walking up and down the along with someone, up and down the corridor in the nursing home on Wednesdays, today's Friday, and he was saying now translating from Dutch, this is annoying, I'm somewhere, but it's nowhere. He was just expressing feeling lost. I found it really poetic and then I said well, let's walk, walk a little bit more, you know. So we were walking up and down and just, I think the meditation of walking, he, he found himself, he was somewhere at one point.
Speaker 4:You know, and what he was noticing wasn't the fact that at one point that he was somewhere where he didn't feel any belonging, but just from the act of walking together, he felt that he was doing something worthwhile. You know, it wasn't. He wasn't somewhere that wasn't anywhere. Well, and I was just going to.
Speaker 5:I was just going to say was that you know.
Speaker 5:First, thank you for sharing your personal story.
Speaker 5:It just shows the impact of how, even when you're ingrained in it like for those of us who are working in formal care settings or you in a volunteer role it still can change. The dynamic changes or the perspective of everything changes when you're in that care role yourself. And then the other thing it made me think of was there's we talk about this a lot at Person Centered Universe and there's an old Zulu saying that a person is a person through others, and if we relate it back to what you had shared at the beginning, that you're able to be your true self when your family is around or when you feel with certain people and when you what the identity that you bring when you're volunteering is one of openness, of you know your true being and how that impacts and how that resonates with the people that you're caring for. Like you said, with the gentleman walking walking around, he didn't need to be looking for anything because he felt like he could be himself, maybe just by being with you, and and so that's that's really, really impactful.
Speaker 2:Yeah, it really makes sense what you're saying, absolutely yeah, and sitting here thinking the whole time how lucky they are to have, you know, to have someone like you that has arrived and just um, you know again not to go. You know divert too much from our, uh, this discussion. But you know, to ashley's point, we we Ashley and I and the we who work in long-term care settings, often you know we're busy, like, as you mentioned, busy, or you get. You were used to the environment and you know there are lots of people who are person-centered and wonderful care providers to residents in homes. But it's just what you've been. I've been reflecting as you're sharing stories and it's just the, the tremendous value that volunteers can bring, because it's and particularly you, um, but yeah, yeah, it's just a totally unique perspective from everyone else who's engaged in that community. Right, because it's, yeah, it's just a different perspective and all of the wonderful relationships that can be made. Anyway, I'm just reflecting on yeah.
Speaker 4:That's absolutely right. Yeah, I mean, you're just there for quality, quality time, right, and every part of what we might think person-centered or person-directed care is about. You can be a conduit for or an enabler of, for every moment of that time. You know it's incredibly enriching for everybody involved. And this narrative care piece I mean it's quite difficult to describe what narrative care is, but kind of briefly, of course, it's just if I can try it's.
Speaker 4:You know how do I support your story today. You know the person I'm interacting with and that could be a member of staff, a member of the team of care providers, caregivers, but it's as well as the residents you know who are living there. Living there, um, and just to not to have anything invested other than that, okay, so how do I just do that in my interaction, interactions, uh, it's really just quite wonderful and it also has helped me to then also stay as a gift that gives outside of the volunteering time. It helps to just give perspective and, over time, really stay focused on the things that matter, Because there are these quite pure, I would say, experiences with people where nobody's got anything invested. You know, there's no agenda, there's no roles in the kind of you know there's no expectations, right?
Speaker 4:You're just having these interactions because you choose to be there, and that's really very enriching, and there is for sure something quite powerful about seeing and being with people who are close to you know they're in their final chapter of life. It does give a lot of perspective on the other things that are going on in my life and how I can kind of give place to them in a broader narrative broad a narrative. Uh, I was last summer. I was walking, uh, uh, one of the residents around in the park and I was asking him so you know, uh, you've done a lot of things. Uh, what do you think uh really matters? Uh, and he was kind of silent for a while. I love that. I thought getting married and having kids matters. I never know whether he's making fun or not, but even that I'm not sure it's really important. Nothing really matters. Yeah, it's kind of um, yeah, yeah that's amazing.
Speaker 2:I love all of these stories.
Speaker 5:I love yeah, yeah, it's just so neat. You know, I think, one of the privileges that we who get to spend time and, like you said, that, undivided time, with no expectations, you know no agenda that's when we really get to see the true person and get those opportunities to to connect with people on a deeper level and you learn so much and, like you said, that that life really isn't about the rat race or the car or the house or the people. It's, it's about just enjoying what, what are the simple things that we can enjoy. So you have a really unique view, a particularly unique view on life stories, and I'd like to thank you for giving you know the definition of narrative care care and how you embody narrative care in the work that you do. And you also know and recognize in a unique way how someone's life story can really shape how they experience their care. So can you tell us about Lifelong Inspiration and what led you to co-found True Doors?
Speaker 4:Sure, sure. So Lifelong Inspiration is a company, but I founded it after 20 years of being in the rat race, 20 years of being in the rat race and at a point in my life when I could do something, I thought I could do it work a little bit differently. And not, and just, oftentimes I feel like companies have a beautiful vision and mission, but actually the beautiful vision, you know, vision and mission is there to, uh, you know, by this vision and mission sounds great, but actually it's there to enable me to make more and more money. That's it right, um, and I wanted to just, um, um, be able to think okay, you, I'm not against making money, that's no problem, but I want the vision and mission, the how and the why to be just as important. And in fact, without putting money higher than, although I'm a private company or we're a private company, that the money shouldn't. You know, whenever the difficult decisions came, that the money shouldn't jump to being the priority. You know, and I felt like the themes that we've been working on are around, feeling at home.
Speaker 4:But when we first started, we were working on a lot of education projects and health care projects and really I mean I'm using poetic license here. I was really looking at this topic of how do you feel at home in the education system, in the health care system, in society home in the education system, in the healthcare system, in society and one of the projects, as I mentioned, that we were working on turned out to be True Doors. We were making life stories in film format when people were moving from their independent living into assisted living and we happened to be taking pictures of their front doors and applying them as decals on the door of the new room. Come about what they'd moved into and from this life story work he extended a little bit later we realized that the decals, these personalizing the front door, could have more meaning for people with dementia, even in terms of helping them to feel at home, because it's something familiar, something personal that helps to reminisce, helps people feel more safe and secure, because there is something personal in this clinical space Beyond that, this idea of feeling at home. As we started to work more and more in long-term care, we're very fortunate to start to meet you both and start working with you both I guess it was maybe six or seven years ago and and fortunate to explore this, I mean I to me.
Speaker 4:I still keep that basic idea of feeling at home. Keep to that basic idea of feeling at home and explore it in terms of how do you help people to feel at home in terms of their day, so where, whereas with true doors, uh, we're thinking about design or, in this case, dementia design, and how do you create a sensory environment that helps people to feel at home, make it familiar, safe, comforting, inspiring? So then people are relaxed and the environment is one that supports quality of life, the work that we've done, you know, just, for example, the, the One Page Profile Masterclass, which is helping people from a strength-based perspective, to caregivers, to support people living in long-term care, to have quality days, because people know at a personal level how they can, can interact with somebody to support their narrative each day with you know how should the day start, how, how, what kind of interactions, uh, do I enjoy? Uh, what's important to me, how do you support me in this scenario if I'm doing this or if I'm forgetting that, or if I start talking about? You know, something that cognitively doesn't really make sense to you in what's going on, but for me it's important, you know, as somebody who lives there and who is having my own story, the work that started doing with Gary Irwin Kenyon also so grateful through your introduction, where we're training nursing home staff to provide Tai Chi to people with dementia seated.
Speaker 4:Tai Chi at the moment, which, in my kind of take on things, is about helping people to feel at home in their body.
Speaker 4:It's about helping people to feel at home in their body.
Speaker 4:So this idea of work, of lifelong inspiration, as far as it extends to long-term care and dementia care, is extended from the design with True Doors into something like the One Page Profile Masterclass, which is about how do you support somebody's narrative, uh, each day, by being able to provide personalized care you know it's nothing to do with, uh, you know, uh, new modern technology or anything, anything fancily innovative, but just by knowing, uh, how to interact with somebody in a way that supports them.
Speaker 4:And then, with Gary, this work that we've started doing on Tai Chi, which I'm really quite inspired by at the moment because I can see also how it helps the people who are on the course themselves, because, you know, we're now talking about helping them to feel centered and feel the benefits of stillness, the power of dropping your breath and coordinating your movement, with your breathing so that you feel calmer, you trigger your parasympathetic nervous system and from that more calm place, how you also exude something that's helpful and calming and relaxing to the environment. These, uh, you know, this topic of feeling at home, uh, explored in these kind of, through these different dimensions, has proven to be quite valuable to us to meet this vision and mission, to achieve the vision and mission and just keep on having ideas that fulfill that for lifelong inspiration. So, yeah, I'm not sure if I'm being coherent, but yeah, that's lifelong inspiration.
Speaker 4:You know that's so we're really having ideas, finding people to work with and developing solutions. You know, for just for brevity, you know, uh, to help people to feel at home in long-term care, in the environment, in, in interactions, in your stories, through your day. And also, you know, not giving up on having positive experiences in your body, even though you might be, you know, um, you know no longer the agile person that you used to be. You know that physical decline that we all experience. You know whether you know we had got a diagnosis of dementia or not. You know just aging itself.
Speaker 2:Yeah, it's no, you are being, you are being coherent and you're you're tying together all the themes of the work that you're doing. I guess what I was thinking when you were talking you're, you're using the, you know, the. It's not really an analogy, but you're saying you're using the concept of feeling at home, right To you know, in in conjunction with um, narrative perspective or, like you know, life story, uh, narrative care idea. But what we often what? I guess the way that you were kind of all encompassing that um into all the things that you're doing through your work at Lifelong Inspiration and True Doors is, you know, reminding me that we often say it's.
Speaker 2:You know, of course there are things with narrative care that you can do, like such as you know help someone to record their biography, or you know make music, a musical soundtrack of someone's life or thing. You know practical approaches or things you can do. You know programming and things like that. But it's we, what Ashley and I always say is it's actually narrative or narrative cares is actually a worldview, right, it's a perspective that you take and that's essentially what I took from what you just said. Like you're, you're trying it's all encompassing, right, all the things that you do in your approach can tie back to this concept of narrative care or narrative, a narrative perspective and and you're you know you're also like further enhancing that with the idea of at home, someone feeling at home and, you know, making meaning of things right and, um, often it's that's the most important thing for someone who, again, all the other noise or the other things about life and being in the rat race, as we said, you know, is is removed right exactly, yeah, exactly.
Speaker 4:I mean I mentioned that for the first three years or so we were working on education projects, also with lifelong inspiration, and one of the things that we were kind of finding and it's from our own experience but you know, the research was showing that, you know, the education system as it was developed was, you know, a product of the industrial age and you know you're very oftentimes very much needing to fit into the system and it's not a personalized approach and a lot of people lose motivation and, you know, don't lose their way in the education system and are somehow conditioned into performing for the sake of the grades or fitting into the system and lose touch with what might be their own intrinsic motivation for, you know, the things that inspire them. But what we found is when we were able to do project-based learning projects, we were doing Socratic discourse, we were helping students to define their own projects and curriculum and bring them to fruition. We saw them grow and grow be the beings that you know that they wanted to be, and that was really very empowering for those kids. You know those, those students. So this world view that you mentioned, you know extends to all areas of our lives.
Speaker 4:So this narrative approach. You know it, it's we are, our stories. You know, as work in the space will say, and they, they are. You can re-story, as you know, I'm now borrowing terms from people you know published in the space um, you're just looking back, you can different, as we all do over time, different ways to look at the things that happened in our life and the different way we could see our education, the different jobs we had, why we had them, why we made the choices we made, what that was based on, whether we have regrets or not, you know what did we learn? Whether we have regrets or not, you know what did we learn and you know, with this diagnosis of dementia, what happens now?
Speaker 4:or how do we continue the story that was there already and find inspiration still in what comes now and find inspiration still in what comes down? This worldview, even when I'm talking about the seated Tai Chi just this very basic thing, that for 30 minutes, people living with a diagnosis of dementia in long-term care and come together and feel that they're doing something that's enjoyable and that's helping them to feel better, you know it's very empowering. It's very simple, you know. You're just talking about breathing and coordinating some kind of you know hand movement with your breathing, and that just that simple thing, that qualitative moment, can be incredibly enriching.
Speaker 2:Yeah, it's true. So can I? Just, I'm going to shift. Can I shift gears with my next question a little bit?
Speaker 2:I'm going to ask you a question and specifically, I know you know this, but we like to, you know, through our podcast. Obviously, you know it's about exploring concepts and you know providing, but we also love to look at providing resources or ideas for things that could be, you know, practically used for our listeners wherever they are in the dementia journey. And you mentioned that we've known one another for a few years now and we first met because Ashley and I, both respectively in our long-term care homes, reached out to actually implement true doors. And I've always thought, personally, I just fell in love with the true doors concept the moment I knew it was like this instant oh my gosh, that's just so brilliant.
Speaker 2:The idea of recreating someone's door from their home, or just simply allowing someone the freedom of choice to choose a door deco that will, you know, reflect their personality, even if it's not a door from their past and whatnot. I've just always thought it's such a brilliant idea and it's a simple tool, but powerful in my experience, to honoring someone's life story and their personhood in care settings. So, in like in long-term care homes. So I know I have several dozen at least stories of impact of this wonderful program or service that you guys offer through True Doors and I would love do you have any that you'd love to that you could share with us about any kind of standout moments or really powerful, incredible moments that you have witnessed through that meaningful intervention.
Speaker 4:Yeah, there's so many before this. I think about three things. When we started doing this, we were completely new to the space, so we didn't think we were doing anything special.
Speaker 4:We were just doing something that we thought was nice to do. We later came to realize that there wasn't this trend of personalization in design. You know, in the in the design, interior design of nursing homes, that wasn't a common thing, whereas actually the research had been saying it for a long time. So already in the 1980s the research was saying you know, you should I the terms they were using weren't this but you know that you should co-create. You know, take the view of the person with lived experience who's going to be living there into account. You know, use their voice to make your design decisions. The research already in the 90s was saying you know, if you help people to feel at home by creating an environment that's familiar, then your healthcare care quality outcomes are going to be better. And the, you know, the piece that we became the term became person-centered care and person-directed care. You know, in the early 2000s it became, you know, more common practice or known in the research space. You know, give people voice, choice and control and that's also, you know, really helpful to care outcomes. And the Trudeau stories are really around these themes. Allowing people to choose their front door is already really empowering, you know, and it's been lovely to see families connecting with each other and their loved one on this, rather than all the difficult decisions that you have to make when you're downsizing and moving into care and all of that stuff. So that's always really enjoyable when we can see that.
Speaker 4:You know, this feeling of home piece from the 90s, the very first project we did I remember walking around with someone. She was, you know, she was just a little bit confused, you know she was just a little bit confused and we were walking together around this kind of, you know, this kind of glass courtyard where you go round and round inside a building. We came around a couple of corners and she saw my colleague Marika actually applying the decal and she stood and I just saw her, bit by bit over a few minutes, clear up. You know you could see physically her eyes clear of her body language changing, her face, relaxing, and then she started to tell stories because she recognized the door and you know she started to tell stories about her life behind the door. You know her dad, that her dad made, you know their dad made them, you know, clean the doorstep and things like this and there used to be an apple tree and in the garden and so on. So this, all the stories that come out, are also really very lovely.
Speaker 4:And there's sometimes we hear really dramatic stories that you know people were constantly trying, uh, you know, exit seeking and trying to get out the the area and after they've got their decal, um, they actually don't do that anymore and they say I'm going home now and then go to their room. So I mean just that such a simple idea and intervention can have this massive impact for this one person who now feels safe, um, and is not scared and not. You know just that you can see, you, you know, we've all seen it that when there's exit seeking, it's extremely stressful for that person and, uh, the, the ripple effect is also being felt by all the other residents and the staff who have to deal with somebody who's really not wanting to be there very actively. And then you mentioned also it's also when we first started doing True Doors projects, we were very much thinking, you know and that was also, you know, what we were being told that what will ring true for people will be oftentimes, you know, the doors from between the age that they lived behind, between the ages of 15 and 25, and that would be the choice, which is fantastic.
Speaker 4:You know, when people are doing that, that absolutely rings true as well. But when people also make decisions because it's not a door that they lived in behind, not a similar design, but something they aspired to, because it's, you know, somehow has a stained glass windows, or you know a beautiful kind of Edwardian design, or you know Key West or whatever the inspiration might be, that's also just so much fun, right, because you've changed this oftentimes quite impersonal clinical space into something that people are having fun with and that's personal and that's colorful and has landmarks and and so on. So yeah you're.
Speaker 4:I mean, that's that you. You understood it straight away, which is fantastic. You know that it's really simple, but it can help people in many different areas of their day and you know how people experience the space, which is great for visitors and staff alike as well, right?
Speaker 2:yeah, that's what I was thinking. I'm remembering my, the, you know my at the time I was working at a small long-term care home and my the staff team. You know, not that no one was negative, you know, before we implemented but just not quite understanding it and one of the most pleasantly unexpected outcomes was actually just how much of an impact it had on on the staff as well and how it kind of brightened up, you know, having all the you know the different doors. Just, you know we have, we had a beautiful home that you know it was brand new and beautiful decor and everything, but it was like you didn't realize, you know, the uniformity of every door being the same. It made it feel, I remember, the staff saying more like a neighborhood, you know, just to like someone walking down down their street in their neighborhood type thing.
Speaker 2:Right, with all the doors differently, not exclusively, but mainly so far, our audience for this podcast is trending toward, you know, being care partners or caregivers that are supporting someone who living, you know living with in community like a family member or a friend, and the point that you made actually is not something I ever thought of that I can recall. Definitely I saw the True Doors as something that was very beneficial to residents and family in the long-term care setting, of course, for reminiscing and, just you know, engagement of them in planning. But I, what you said about the transition into long-term care is a totally new angle that I haven't and that's very powerful. You know the fact that people are. You know, often that's a very stressful time if someone's moving from their home into a long-term care, a new home in long-term care, and you're saying like they're downsizing and the decisions that need to get made and and what a wonderful tool that could help to support families through that transition.
Speaker 5:Yeah, and I think that was it.
Speaker 5:That's what resonated for me as well.
Speaker 5:You know we think about and again, daphne and I, both having worked in long-term care me still working in long-term care and just how frequently we see that loss of sense of self when there's that transition from home to a care home, and how, again, it's so simple but it's really not.
Speaker 5:It's a simple, it's simple to implement, but there is so much value in that true door. And the other piece I wanted to just comment on was just how the experience of picking the true door whether it be a personalized door or one that someone has chosen because they aspired to have that door, it's so there's real meaning, making that happens there, and so not rushing the process or rushing the project to get to the end result is critical if you want, you know, to again honor that a person's personhood or their individuality or their identity through that experience and and it it's one of the most, I think, impactful resources that I've seen to be able to implement narrative care in a way that is also visual and can be used. You know, you can see it and feel it as well.
Speaker 4:Yeah, yeah indeed.
Speaker 5:That's amazing. Well, I think we could talk to you forever, rezeb, and I really don't want this to end, I have to say. But we do have one last question, and it's a question that we ask all of our podcast guests, and so our last question it's just a simple question, a short question. So what is your hope for the future for people affected by dementia?
Speaker 4:Oh, somehow I hadn't heard this question.
Speaker 3:It's small, but it's big at the same time.
Speaker 5:Yeah.
Speaker 4:Yeah Well, this inspiration, joy um quality interactions, love um yeah, a worth a worthwhile and, uh, you know, engaged life after diagnosis. I mean these things right, with all the challenges that you know, recognizing all the challenges that are entailed in doing that. Yeah, I, I mean, I'm hopeful, I I think that you know how we're supporting people with dementia and our understanding of how to live with dementia is improving over time.
Speaker 2:Just, you know, wish for more improvement you know continued improvement Well, and you're certainly affecting that in your various corners of the world that you are involved in this space, rezeb.
Speaker 4:Thank you, that means a lot coming from both of you. Really, I have a lot of respect for the work that you both do. It's really quite special.
Speaker 5:Um, yeah, thank you the feeling is mutual, for sure, yeah we love.
Speaker 2:Yeah, as ashley says, we, we just love these, these interviews. Each, each time we interview a guest on this podcast, it reminds us of all the gifts and all the wonderful, beautiful energy of the people who are working in this space. It's been a privilege to chat with you this morning with this lens.
Speaker 5:It really has.
Speaker 4:Thank you, it's been real fun. Thank you, I'm sure this won't be really has. Thank you, it's been real fun.
Speaker 2:Thank you, and I'm sure this won't be the last time you're here. We'll have to have you back and and I'm talking about uh all any one of those little uh things that we went talked to at sean today could be a spin-off episode. Absolutely. Thank you so much for them, thanks so much, ashley.
Speaker 5:Thanks stephanie. Thank you so much, rezeb.
Speaker 4:Thanks so much, Ashley, Thanks.
Speaker 2:Stephanie oh my gosh, that was so amazing. He was, yeah, just really interesting for us to have Rezeb come on with that lens, because we, you know, for our listeners may not know that we work with Rezeb on a number of collaborations and so we're often, you know, coming together for a purpose and you know, to get something done or to plan, you know something, and just such a treat to be able to listen to him, coming from such an authentic place of just pure authentic goodness of, you know, wanting to volunteer and really be present in this space with residents from care, just it was, I know.
Speaker 5:I just just loved that yeah, and I think, I think you know, in conversations, because we've worked with Rezeb for so long, we've had the opportunity to learn more about him and I think, based on the fact that he really just wanted, his reasoning for wanting to be a volunteer in the first place was so that he could be better entrenched in long term care, so he could better understand the perspectives of, you know, the families, the residents themselves and the care providers. And he comes from such such a place that it's all about learning for him and defining and better understanding and I think the fact that he, you know, as he demonstrates how he goes in and imparts his own wisdom in his own way into the for the families and the staff and the residents themselves, is it's just, it's really beautiful. Yeah, it's nice to hear that perspective.
Speaker 2:Really moving and you know, he's you know the themes that he was touching on. It was it was really powerful for me to be actually reflecting a little bit throughout that conversation about the power of volunteers in long-term care and how they you know the fact of the volunteers come and they don't have expectations that they need to necessarily carry out in the same way that the staff members would, for example, or even a family visitor, or it's like a completely neutral party that can just be such a wonderful resource for supporting residents. And yeah, it just made me think of it's like the silent heroes, I guess. It's you know when, when we think of it. You know we often do volunteer recognition. You know events and of course we appreciate our volunteers and you know we want in those settings. But it's just the real. That was just a real insight, I guess, into the volunteering experience and how much meaning making I guess goes on in it in that experience right, right, exactly.
Speaker 5:And how you know we often we don't consider and this can be translated into, you know, the at home care partner as well, because we don't consider just how impactful some, you know it could be family, friends, it could be neighbors, it could be anyone in that greater circle of support who, just they, want to be able to contribute in a unique way, and they, it's just as much about meaning making for them, as you just said, the term you used it's just about. It's just as much about them receiving benefits, as it is for the individual who's receiving those that volunteerism, yeah, and maybe even the families, right, and and as well the families for sure.
Speaker 2:Yeah, he touched on you know his view of narrative and you know the idea that narrative care is home and I just I think I guess what I would say might again, we know him so well and we respect him and we know that he's amazing, but just the again those reflections on the actual. You know the True Doors initiative and the programming and how it really. It's not just a, it's not a product that they sell. There's meaning behind it and it's a real, true program, that or an initiative that can really transform the experience in long-term care. I guess I just the way that he views everything through that lens of narrative and someone's story and funny, it's just he's just our people, that's for sure, yeah, yeah, and he's, yeah.
Speaker 5:His perspective is just so balanced and calm and and I hope that our you, as our listeners, really enjoyed just listening to him. Just to listen to him is a treat, so we hope you enjoyed it, yeah.
Speaker 2:Thanks for listening everyone.
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.
