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Redefining Dementia
resources and helpful life experiences, the podcast will look to connect with the audience to provide helpful and meaningful takeaways.
Redefining Dementia
Redefining Dementia: A Journey Towards Person-Centered Care
Are you ready to go on a soulful journey and redefine dementia with us? We're joined by Rahzeb Choudhury, founder of Lifelong Inspiration and co-founder of TrueDoors, who helps us unravel the birth of Person Centered Universe and the significance of our mission. We aim to create transformative conversations around dementia care and reveal how the Person Centered Universe took shape. We promise you'll gain profound insights into our shared vision for a future where dementia care is human-centric, balanced with medical processes, and tailored to the individual's needs.
Picture a world where dementia ceases to be an intimidating diagnosis, but instead, a new course of life that can be navigated with the right support and resources. That's our dream. In this episode, Rahzeb guides a discussion with Person Centred Universe co-founders, Ashley King and Daphne Noonan, who bring their wealth of experience to the table. From exploring the challenges faced by long-term care facilities to discussing the resources needed to support those living with dementia in the community, we strive to illuminate how we can help individuals maintain an inspired life post-diagnosis.
But that's not all. We also introduce you to our amazing podcast guests, individuals who have made significant contributions in their fields. They share their unique perspectives on dementia care, from Sheila Warnock's 'Share the Care' program to Dr. Gary Irwin Kenyon's focus on stillness, to the storytelling and engagement practices of Dr. Bill Randall and Maury Voisey-Barlin, to Sonia Barness' emphasis on socialization, to the expertise of Suzanne Quiring and Jennifer Buchanan in nutrition and music therapy. This episode is all about redefining dementia care through inspiring conversations. Join us today!
See below for more information about our hosts, Daphne Noon and Ashley King, our Guest Host, Rahzeb Choudhury, as well as more information about their work.
About our Guest Host:
Rahzeb Choudhury
Rahzeb is the founder of Lifelong Inspiration, where he and his team mentor for- profit and non-profit organizations as they seek to provide a person-centred approach to their clients. He is also the co-founder and Director of True Doors, which enhances nursing home settings by adding a touch of home with personalized doors, reminiscent of one’s own home.
Rahzeb personally mentors Daphne and Ashley as co-founders of Person Centred Universe, and they are incredibly grateful for the benefit of his extensive knowledge and experience in business development, both as a fellow co-founder of Social Enterprise businesses and as a leader who has driven many organizations (small and large) forward throughout his career.
Rahzeb has keen insight into our values and what we hope to achieve through our work. In this episode, Rahzeb guides us through a rich conversation about how Person Centred Universe was born, why the work of Person Centred Universe is so meaningful to us, and what this podcast has in store for you as listeners.
About our Hosts:
https://www.personcentreduniverse.com/about/
Welcome to Redefining Dementia. I'm Ashley King and I'm Daphne Noonan. Thank you for joining us. We are your co-hosts as well as the co-founders of Person Centered Universe, where we help you provide person-centered dementia care at home, at work or in your community. Through the Redefining Dementia podcast, we are striving toward a better world for those affected by dementia by sharing resources and insights from experts around the world.
Speaker 2:When consuming resources or media about dementia, the focus is often on the challenges, stigma and fear that may accompany a diagnosis of dementia. This podcast seeks to shift that narrative to focus on and celebrate living well with dementia and what that means for caregivers, through the sharing of stories, resources and helpful life experiences. We hope to provide you with helpful and meaningful takeaways for your journey ahead as special note before we begin.
Speaker 1:This information shared in this podcast is for educational purposes only. If you or someone you know is experiencing symptoms of dementia, we encourage you to seek medical advice from a qualified healthcare professional.
Speaker 2:We are so excited to introduce you to the Redefining Dementia podcast. On this inaugural episode podcast, co-hosts Daphne Noonan, me and Ashley King are interviewed by our friend and mentor, rezeb Chowdhury. Rezeb is the founder of Lifelong Inspiration, where he and his team mentor for-profit and non-profit organizations as they seek to provide a person-centered approach to their clients. He is also the co-founder and director of an amazing organization called TrueDoors, which enhances nursing home settings by adding a touch of home with personalized doors reminiscent of one's own home.
Speaker 2:Rezeb personally mentors myself and Ashley as the co-founders of Person-Centered Universe, and we are incredibly grateful for the benefit of his extensive knowledge and experience in business development. Both as a fellow co-founder of social enterprise businesses and as a leader who has driven many organizations, small and large, forward throughout his career, rezeb has a keen insight into our values and what we hope to achieve through our work. In this episode, rezeb guides us through a rich conversation about how Person-Centered Universe was born, why the work of Person-Centered Universe is so meaningful to us and what this podcast has in store for you as listeners. So now, without further delay, we hope you enjoyed this very special introductory episode of the Redefining Dementia podcast.
Speaker 3:Welcome. I'm Rezeb Choudhury, the founder of Lifelong Inspiration, and I have the great privilege today of introducing the first session of the Redefining Dementia podcast. And what we want to do today is take a few minutes to actually introduce the true hosts of the podcast, daphne Noonan and Ashley King of Person-Centered Universe. I wondered if I could ask Daphne and Ashley to start by. Just if each of you could just introduce yourselves, that'd be okay.
Speaker 2:Yes, amazing, and we're very privileged that you are here to introduce us and to interview us about this project which is very near and dear to our hearts. So I'll start. I'm Daphne Noonan, I'm one of the co-founders of Person-Centered Universe and I guess a little bit about me. I'm originally from Prince Edward Island, Canada, which is a small province in eastern Canada and one of the co-founders of Person-Centered Universe, as I mentioned, and I guess now I'm living in New Brunswick and that's me.
Speaker 1:Thanks, daphne, and thank you so much, Rzeb, for introducing us today. It's such a privilege to have you join us. So I'm Ashley King. I've worked in health and long-term care for just about 15 years now, starting working in recreation and building my way up into executive management roles. I am also the co-founder of Person-Centered Universe, and I actually started my journey and piqued my interest in working in dementia care when I was caring for my grandmother at home while I was going through university, and so that really changed my career trajectory. I'm also a student. I wear many hats. I'm a student at the Rotman School of Management at the University of Toronto, and I'm a New Brunswick native. I've been, I grew up in Fredericton and moved to London, but called New Brunswick home and loved New Brunswick. Thank you.
Speaker 3:That's great. Thanks so much. You both hinted at the fact that you're in I don't know what the right term is, but let's say veterans of the industry, and I've seen, in particular, long-term care from many sides through the different levels that there are. You're also, I know, involved in projects which cover care before people actually arrive in long-term care, and can I ask you to just share maybe some of the projects that you've been involved in through perhaps the outside of society? Ashley?
Speaker 1:Absolutely so. I wanted to start because I think I wanted to share my personal story, and so what really brought me to work in dementia care and see that there was opportunity within dementia care Practices and how we can really envision a better world for those affected by dementia, as is our vision for person in the centre of the universe was founded on the fact that being primary care provider for my grandmother at home she was in her 80s, she was diagnosed in the book dementia for approximately 10 years and seeing that really we needed to seek and find our own supports, we needed to come up with our own ideas and strategies as a family and we really needed to envision person-centeredness ourselves and by ourselves a lot of times, to be able to provide the best care that we could to Grammy so that she could live at home for as long as she could. We were lucky enough that we had great supports around us, but definitely I think something that I recognised was that I was often just putting one foot in front of the other and not thinking critically or thinking with any innovation on how we can improve the care or the support that we had for Grammy, and so that really sparked my interest. But then again, as I said, I've been working about 15 years in the industry and I'll let Daphne speak to some of the things that we do as person-centered universe.
Speaker 1:But I'll start that person-centered universe was really born out of a belief and a vision that we can provide better care for those living with dementia, and it was actually started in our car, in Daphne's car, driving to St Thomas University to host a lecture with a group of bright-eyed students, and so we started down the journey of entrepreneurship and providing supportive dementia care by receiving our genetic care mapping certification.
Speaker 1:That was based at Bradford University in the UK and really what that allowed us to do as TCM is an observational tool that can be used to identify the quality of person-centered care provision in practice in long-term care and other care settings, community care settings and it can also be used as a tool to identify the quality of a person-centered dementia care culture and practice within an organization.
Speaker 1:And so with that, daphne and I really identified that this was an innovative practice, that people were trying things. They wanted to support people living with dementia, but people didn't know how, they weren't sure how to educate, what to educate on, especially in long-term care and community care settings, in those more formal institutions, and they really they knew that they weren't meeting the best quality of life or providing the best quality of life for the people that they were caring for, but they didn't know the next step or the next place or the next way or direction to move in. So, daphne, I'll hand it over to you, maybe to talk about some of the other programs that we've instituted since dementia care mapping.
Speaker 2:Sure, I guess I'll maybe back up a little bit though first and just explain a little bit about my story. And you know the in the industry, but I guess I've been working in the field of elder care for more than 20 years now. It's hard to believe. I guess time flies when you're having fun. I began my career as an activity professional actually in Ontario, in Ontario, canada, and then moved to New Brunswick. I worked primarily as someone who was an activity professional, but I was working always with dementia populations, so in elder care, working with groups of residents that were walking some type of journey with dementia, and I guess I've always wanted.
Speaker 2:Throughout my career I've really always been passionate about innovation and learning and specifically, I guess, working, as you know, to develop people as better caregivers. So a few years after I began my career I moved back to New Brunswick where I had done my undergraduate degree at St Thomas University and I volunteered during that time, almost immediately began volunteering with the Alzheimer's Society. I began that journey and volunteered with the Alzheimer's Society in Canada for more than a decade while I worked and obtained my master's of adult education, and so throughout the years I just really always looked at applying my, my learning, my professional skills to this, I guess, passion of developing, you know, a better, better circumstances, better environments for people who are living with dementia. Most recently, I was the director of a small nursing home here in Canada where we worked really hard and were very successful, I think, at developing a culture of person-centered care and it was, yeah, so, just quite a journey and I guess, just kind of I want I don't want to take away all of Rezeb's questions, but just to touch on what Ashley mentioned about person-centered universe.
Speaker 2:I guess the beginning of why we we began person-centered universe Ashley, you referenced it being in my car and talking about how we could create a business or some kind of entity that could help in this regard. You know, I think we really wanted freedom to create supportive resources for people who are traveling this path with dementia. You know something beyond institutional constraints, if I can say that, and so I think what we both have done is we've working within wonderful organizations, we've spent our career, you know, on that regard, changing things from the inside out, and now, and with person-centered universe, we really are excited about focusing on change from the outside, so looking, you know, from a higher level of how to support individuals who are working in healthcare agencies, and also folks in the community those community caregivers and people who are living at home and to have a diagnosis of dementia.
Speaker 3:Thank you, thanks so much. One of the things that I found really exciting when I met you both I guess it's six, seven years ago now was that, while you really have grounded knowledge and experience in the industry, the sector, you also both exhibited a tremendous kind of freedom in how you think and come at all the different challenges that seem to arise. Because ultimately, what we're talking about is a very human process where people receive a diagnosis that there's some kind of decline and falls on the label dementia, and then there's a process of orientation, adjustment for that person and their family, their loved ones, and oftentimes there's then a move at some stage into a residential institutional care setting and then finally, as there is for us all, there's a palliative story and all of that involves the thing that maybe has had a lot of focus the medical process, and then there's just the sheer human process, and I mean that's the piece where I really felt inspiration from you both, that you both understood the balance and the importance of the balance between the two and the importance of kind of ensuring people maintain inspired lives after the diagnosis. So you know that your your work on these three pillars of care in the community, individually, through loved ones care as it's provided as really just understanding and support in the community through you know all the different organizations, businesses, all the interactions you have as you're out and about in the community and then, of course, long term care.
Speaker 3:We've both, you know, grown and made tremendous changes and what I wanted to understand was where you think the main challenges are in those three areas in loved ones caring for or helping and supporting their loved one with dementia, the community and the long term care space, which usually gets, I think you know, a lot of scrutiny when things go wrong. In terms of your in a person centered universe perspective. What are the three or things that in each of those spaces that you would love to give more attention or would like there to be given more attention, maybe definitely could ask you to go first this time?
Speaker 2:Sure, wow, that's a great question, thank you. Thank you for putting it in that beautiful context, I guess. So, yeah, I'll touch on each and I would. I would say, ashley and I always have a knack for interrupting one another.
Speaker 2:So feel free to jump in, ashley, if you feel that some strongly about something that I'm saying, but I guess those are very kind of three different areas of focus, for that we do tend to focus on, for person centered universe as we go about our work, I think, with, I guess, the, the area where we work with health care agencies and, I think the biggest so long term care homes or organizations that provide formal services to individuals who are affected by dementia. So the biggest challenge in those, you know, that area of the work, I think, and for those organizations I kind of referenced it earlier it tends to be, I guess, sort of the institutional history or the institutional constraints, and I think that there, you know, no one begins their work in long term care, present company included, I guess all three of us because we're bad people, right, we want to work in that field and in that area because we care, and what often happens, though, is that there is, you know, there are challenges associated, of course, with always, you know, not enough hours in the day to do the work and whatnot, but it's really a question of culture and looking at challenging some of those institutional narratives that have always existed in within the long term care homes to a more of a focus of person centered care. And we have a dear, dear friend actually, who we interviewed for this podcast. His name is Jim Kinsey and he always references the you know sort of the concept of the vestibule. So people go through the vestibule of the front door of the long term care home and all of a sudden we begin to, I guess, make all kinds of assumptions that they leave behind who they were and what they liked and you know what their routines were before they moved in there, in order to sort of make it a little more suitable for our routines and things within the organization.
Speaker 2:So the work that we focus on at person centered in the universe in relation to long term care homes really does focus on helping teams that to really focus on improving that culture and really bringing it back to the individual and allowing the individual to sort of create as much as possible an extension of their life before they moved into long term care.
Speaker 2:And then I'll speak as well about sort of the community based individuals that we work with.
Speaker 2:So it could be a care partner of someone who's living with dementia or an individual who's had a diagnosis and I think that really what we wanted again, I keep referencing the concept of sort of freedom, but we wanted to have freedom to create supportive resources for individuals who are living, you know, living with a diagnosis, or supporting someone you know who's living with a diagnosis, and to really help individuals who are, you know, in the community to understand that there is a way and there are so many, there are so many challenges, there are so many things that are scary about a diagnosis, but there is a possibility and there is a way to live well, you know, once a diagnosis of dementia is experienced, and that has been a passion of ours.
Speaker 2:I'll reference another, another guest we've had on our podcast, named Jim Mann, and he took both of our breath away when he spoke about his journey after receiving a diagnosis of dementia and his his quote that I will never forget and the last is advice is his quote was you have to live with dementia, and I think that that just encapsulates, for me, a lot of what we want to do with our work is to really provide, I guess, hope that there is a way to approach the situation that you know allows for wellness and peace. And yeah, so that's, I guess that's my, my two cents to that very excellent question.
Speaker 3:So it's really powerful to the point. Don't give up on life itself, that's, on quality, on on enjoyment, on value, relationship. Yeah, yeah, yeah, yeah, yeah, yeah, ashley, is there anything you want to add to?
Speaker 1:Yeah, I mean, I think, definitely put it so well, but I agree, I think, because we've had some excellent and amazing podcast guests that we've had the opportunity to to interview, as Stephanie said, probably one of the most profound was when we had the opportunity to interview Jim man and really get that perspective of the person who's living with dementia. And whether we're talking about community organizations, you know, long term care organizations or even individuals, people living at home, it's about how do you support and develop the opportunity for the individual who's living with dementia to continue to live and live well and live with purpose, and so I think that's a pretty much coming up in turn but person who does really maintain their identity, allow them to maintain their identity and provide them space to do things you know and to to be who they, who they were before, but also who they might be now, now that they have that diagnosis. And so I think for us, something we see that there's opportunity in in all three settings is and it ties back to the provision of person-centered dementia care is really how do we promote the individual identity of each of the people that we're supporting? It's not just about that physical medical care. That's very important. I'm not negating that.
Speaker 1:But when supporting someone living with dementia, providing that emotional and spiritual and social support is as important, if not more important, because often their bodies are not, their bodies aren't as impacted as their minds are. So how do we support that? How do we support families, because they often know and see and want to uphold that identity. But how do we support families to do that? How do we create a community that understands and respects and upholds that personhood and that identity of the people who are living with dementia in that community? So yeah, I mean I think Daphne identified the three areas really well and for me, just looking at it, how can we improve all three with a few things? I really think the provision of supporting people to be themselves and individualistically is really key and important.
Speaker 3:Thank you, thank you. In essence, you're also really answering a question that I had, which was really what is it that you're wanting to redefine with redefining dementia, with the redefining dementia podcast, daphne? Maybe I could ask you to just reflect on that a little bit.
Speaker 2:Yeah, I will, and I just kind of picking up on Ashley's comments, I guess I would. Both of us are very passionate, as I'm sure you know. You've known us a while and from a we can be very passionate and philosophical about things as well. But I think, from a bit of a more pragmatic perspective as well, we both also have a huge heart for understanding that there is also a need for very, very practical knowledge and practical skills and tools. So having a diagnosis with dementia is not something that to be taken lightly. It does impact a person's life and their journey in a way that changes it away from maybe what perhaps the plan was. And also to be working in an environment, say in long-term care, with individuals who have received a diagnosis of dementia, that's also. It requires a lot of practical skills as well as the passionate side. So I guess another goal or sort of an equal goal of us you know, with this podcast is particularly for those who are living in their homes and in communities is to fill the gap, I guess, around. You know that practical knowledge, as well as inspiring, you know hope and you know a positive outlook on it. But really, looking at how do you do this. It is a skill, I guess, that needs to be mastered in some way, and so I guess I didn't want to lose sight of that, of course, with all of our, you know, positive energy around really our beliefs. But so we've really worked really hard to create the podcast so that we can have practical suggestions and tips and ideas as well.
Speaker 2:But I guess, just to go back to your question of you know why, what the term means of redefining that journey, it's really, I guess I'll speak to. You know, there's a stigma that often happens when someone receives a diagnosis of dementia and you know the stigma is that a person you know instantly changes. So we've referenced him a couple of times. But our friend, jim Mann, who is interviewed on this podcast, really spoke to that quite a lot of you know, not only does the world sort of do that to us you know in his words, us, you know he's someone who is living with a diagnosis.
Speaker 2:The world does it, you know, because people make assumptions, and even the medical community sometimes you know, in the way that they provide advice and whatnot, that this instantly changes a person, but also because of those sort of external assumptions and stigma, I guess, what Jim also spoke to so eloquently was.
Speaker 2:You know it impacts how the person themselves who's received a diagnosis will often perceive themselves, and you know they may decide to stop, you know, or make unconscious decisions to stop doing things that they loved or to just make assumptions that they can't do things anymore or retreat within themselves. It can be very isolating as a result of that, and so, I guess, go back to answering the question of what does it mean? This concept of redefining dementia that we've come up with and named our podcast is the idea of just sort of flipping that script on its head. And you know, knowing that you know, of course it's a very profound moment in a person's life to receive a diagnosis of dementia and it's a profound moment in a care partner's life to have to sort of renegotiate the path that you thought you had for your life. However, it is possible to again to live well and it is possible to thrive, actually after a diagnosis of dementia. So that's what we mean when we say redefining dementia and why we thought it was a great name for our podcast.
Speaker 3:Great, thank you. I wanted to ask. You mentioned now the two gyms who will are in two episodes Jim Mann and Jim Kinsey. Maybe you could mention a few of the other guests that you've had that will be in the different episodes of the podcast.
Speaker 1:Absolutely so. We are really really excited because we think that we have a really robust group of podcast guests. So we have Sheila Warnock speaking about engaging caregivers and specifically her program, share the Care. We also have Dr Gary Irwin Kenyon speaking about the importance of stillness and really looking after yourself as a caregiver.
Speaker 1:We also have Dr Bill Randall, who talks about the importance we really had a deep discussion around both narrative but then also storytelling and the provision of engaging and supporting storytelling and being connected to our communities and to each other and even just general connectedness and how important that is as we age and as people go through their journey with dementia and caregivers as well. And, as Stephanie said, we have the two gyms. We also had Maury Wozzi-Berlin, from Australia, and he really talks about the importance of engagement and how you can positively engage individuals living with dementia, based on their individual needs and also their individual preferences, and how he even will win, how you can do that in the face of COVID, how we can continue to support that. And we had Sonia Barthness she's a gerontologist and really speaking about the importance of socialization and creating social structures to engage people living with dementia and their care providers.
Speaker 2:Yeah, that's almost everyone, ashley. There are also two. Really, I would say to use the term expert in their field is almost pale compared to the knowledge, but two Canadian, I guess rock stars in their field was Suzanne Quiring, who is really a pioneer and an expert in many ways around the topic. She's a dietitian and she is an expert in the topic of meal times and nutrition, which is a very practical and important topic for our audience. And then also Jennifer Buchanan, who is a Canadian music therapist who really just has been. She's an. I'm in awe of her as well. She's really changed the world through her career in music therapy in Canada, and so she spoke a lot about the use of music, for you know the importance of factoring music into care plans and care settings for individuals who are living with dementia and for care partners as well.
Speaker 2:And I think it's probably important that this stage since we are talking a little bit about more the detail of the podcast that people understand that these first dozen or so episodes were created. Of course, we always are looking for opportunities to support our work. So we were sponsored by the New Horizons for Seniors Grant, which is a federal grant program here in Canada, and so, as a result of you know, we were very grateful for that opportunity so we were able to actually develop those first, as I say, dozen or so episodes based on funding that we received. That we were able to do focus groups with individuals who have received a diagnosis and their care partners, and we worked closely with the Alzheimer's Society of New Brunswick and some other community organizations in New Brunswick to create the focus groups. So the themes that came from these first few episodes of our podcast actually came from individuals who are directly impacted. So we're very proud of that.
Speaker 3:Thank, you, thanks so much. Now, I think the best thing to do is maybe wrap up, and I'm really looking forward to listening to and learning from the different episodes of this first series of 12. Thank you, daphne. Thank you, ashley. Thanks so much.
Speaker 2:Thank you so much and we're very happy that you took the time out of your life to introduce us.
Speaker 3:Oh, it's really my privilege.
Speaker 1:Thank you for listening to this episode of the Redefining Dementia podcast. We hope that you have found this information helpful and inspiring. No matter where you find yourself in the dementia journey Whether you are a person living with dementia, a healthcare professional, family and friend care provider, or an ally we aspire to shift the narrative and redefine what dementia means to you.
Speaker 2:This podcast was made possible by the New Horizons for Seniors program. Our music is written and produced by Scott Holmes. The podcast was produced by Jana Jones, and we'd like to offer a very special thanks to our affiliates at Lifelong Inspiration and, of course, to our amazingly talented and knowledgeable guests who gave of their time to share their expertise with us.
