17. Revolutionizing Dementia Care Through VR Training

Episode Description

Dr. Marie Savundranayagam's innovative virtual reality training program is transforming dementia care by teaching healthcare providers person-centred communication skills in an immersive, judgment-free environment. Her research and personal caregiving experience have shaped a program that helps frontline workers see beyond the condition to connect with the whole person, improving care outcomes while rekindling caregivers' passion for their profession.

Key Takeaways:

• Be Epic VR uses conversational artificial intelligence to create realistic practice scenarios with diverse avatars
• Personal caregiving experience with her father who had Parkinson's disease inspired Marie's research focus
• Research identified "missed opportunities" where caregivers failed to respond to personal conversation openings
• Cultural humility approach acknowledges we can never fully understand others' experiences but remain open to learning
• The program gives gentle feedback when learners miss opportunities, avoiding shame while encouraging growth
• Virtual reality training reduces fear of making mistakes, allowing participants to practice difficult scenarios
• Managers report staff show increased confidence and better person-centred care after training
• Research shows significant measurable improvements in communication approaches after completing the program
• Future research will examine potential implicit bias in how we communicate with people of different backgrounds
• Even in rushed healthcare environments, small communication changes can make meaningful differences

Learn more about Be EPIC:  https://www.uwo.ca/fhs/care/be_epic/index.html

Contact Marie:  msavund@uwo.ca

@SamkatzCHARU on X

@samkatzcharu on Instagram

Sam Katz CHARU on LinkedIn

Thank you for listening!

Do you have a question or a topic related to "capturing essence for care" that you would like discussed on the podcast? Text the show using the link above or send Lisa an email: awestruckaspirations@gmail.com

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Intro and outro music with thanks: Upbeat and Sweet No Strings by Musictown

Lisa brings over 25 years of experience working in healthcare settings with older adults. The perspectives shared on this podcast are her own and do not represent the views of any past or current employer. Patient/resident stories are shared only with explicit permission or as anonymized composites for educational purposes.

Chapters

• 0:00 Introduction to Dr. Marie Savundranayagam
• 19:05 Personal Caregiving Experience and Inspiration
• 27:32 Developing Person-Centered Communication Training
• 36:14 How Be Epic VR Works
• 47:11 Learning Through Virtual Reality Simulations
• 56:04 Cultural Humility and Diversity in Training
• 1:01:17 Addressing Bias and Future Research

Transcript

Lisa: 0:04

Welcome to Capturing Essence for Care, where we discuss the importance of incorporating personal life stories into healthcare and share ideas to help you on your journey. I'm your host, Lisa Joworski. Well, hello everyone, and welcome to Capturing Essence for Care. I'm Lisa, and today you're in for a special treat. If you've ever wondered about how we can possibly help our frontline care staff, as well as family members and friends, to really understand how to communicate and approach a person living with dementia effectively, considering the whole person, then you're going to want to stick around for this interview. I have Dr. Marie Savundranayagam, who is a researcher, educator, and advocate for person-centred dementia care with me today. She is an associate professor in the School of Health Studies at Western University, and she's director of the Sam Katz Community Health and Aging Research Unit. With over two decades of experience, her research focuses on improving communication in dementia care across the full continuum of caregiving, formal, and family caregiving across cultures and care settings. Marie is the creator of Be Epic VR, an evidence-informed virtual reality training program that equips care providers with practical tools for person-centred communication. Her work doesn't just aim to improve caregiver skills, it reimagines how we train, support, and value all those involved in dementia care, including personal support workers, their managers, and family members. Driven by personal experience as a caregiver and a deep commitment to health equity, Marie's research bridges the gap between innovation and impact. Her work is shaping national conversations about dementia care workforce development, cultural humility, and the role of immersive technologies in health education. Marie, that just blows me away, and I couldn't be more grateful for you to join me here to have these really important conversations that aren't happening enough. And I had said before we pressed record that I had another bio from you that I got from the website. And this one is just much more personal, that I think just makes me want to dig deeper into some of these last pieces that are mentioned here. So thank you for joining me today.

Marie: 2:38

Thank you for having me. I'm really looking forward to this podcast.

Lisa: 2:42

Oh, I'm glad. And I'm honoured because I don't think you do podcasts very often. So I'm touched that you would join me here today to try this out and get the message out there.

Marie: 2:52

This is this is my first podcast, and I'm really, really excited. Thank you.

Lisa: 2:57

Oh, I'm glad. I'm glad. You are doing wonderful work. So you and I connected a few years ago, and I know that you've done some wonderful research with McCormick Dementia Services. Uh, and I actually, you and I have been in contact through LinkedIn as well because I was doing some research about life story work and videos and was very curious about that. And you sent me some articles that you've been a part of. But I'm wondering if you could just start since what I just read includes you having some personal experience as a caregiver. Um, I'm interested to know a little bit more about that side, if you don't mind.

Marie: 3:35

Sure, you know, and it's something that I don't actually talk much about, uh, oddly enough, because you know, most of the time I want the, you know, the research to sort of speak for its for itself or the what our participants are saying to be at the at the forefront. But um, I was always interested in this idea that you know, at any one point of time in our lives we may be asked to um be a caregiver or to receive care, right? That's really how it first started with that idea. And I and I think it, I mean, it's I'm pretty sure it came from my just growing up and the way that my parents were, you know, caregivers to their parents. But I think where it really hit home and it became a lot more personal to me is when my dad was um diagnosed with Parkinson's disease. Um yeah, and it took a little, it took a while, like as many other caregivers stories, right? It took a while to sort out the diagnosis, you know, get the right urologist. And, you know, my area is like communication um and dementia and caregiving. And so even though many people know Parkinson's disease as like a movement disorder, um, there are communication is influenced by but in in part in for persons living with Parkinson's. And so my dad was um always like a huge, an amazing orator. He was always the MC at these big family parties that we would have. And so he was an excellent speaker. And so for the Parkinson's to affect his communication, that was really, that was really, really tough. Um, and so I so at that point I was already uh a professor um and a researcher, and I was like, okay, we have to put everything into practice now. And I was very, very concerned about the way that the neurologists and all the, you know, the health uh professionals would treat him as you know, I was really that that's when this idea that you know you gotta treat the you have to talk to the person and not um look at him as a person who has difficulty getting his words out and it's very hard to hear him. I didn't want people to treat him like that. I wanted them to know him as um the amazing speaker that he was.

Lisa: 6:15

Yes.

Marie: 6:16

And I was just so it was just so important that the care team was responsive, not only to him, but also to my mom. So I had coached my mom. At that time, I I wasn't even living in Canada. So it was uh uh difficult, you know, to try to try to be there as a distance caregiver, and then I would uh you know fly in for important meetings with health professionals. And so for one of the meetings, it was just him and my mom, and I had coached my mom and I said, you know, make sure you talk about all the changes that you've noticed in terms of his communication. And um and in the when she she was prepped and she went into the encounter with the neurologist, they really didn't pay attention to her, and that really um bothered me because you know, as many people would think only of the movement aspects of Parkinson's and not necessarily the communication. And I I wanted um, you know, I wanted what I was working hard to happen, right? That when somebody gets diagnosed with a you know um any health condition, that you pay attention to the the person and also the family, because the family always notices the change or the changes. And and so that really bugged me, to be frank. And um yeah, and he they were just sort of left, right, to uh for us now to figure it out on our own. Um, but not everybody has a gerontologist as a daughter, right? To figure to figure that out, right? And so I was thinking, wow, that is really not fair. Um and so this whole thing about system navigation is is dear to my heart. Well, I'd be happy to work with everybody, oh you know, all the researchers to make that uh much better for anybody with a health condition in you know, um that affects cognition or older adults.

Lisa: 8:29

Wow. Thank you for sharing that. And I um as much as I I have family as well, so um, you know, so I have some lived experience, not in the same way. What I do want to share though is that your story and your experience reminds me of being in my professional role and being in a care meeting with a wife that I was supporting whose husband had um, you know, a certain type of dementia. And the daughter was on the phone, we telephone conferenced her in, and I very much felt, and it wasn't just me, it was the the wife who was sitting beside me, and she was just so nervous and didn't feel like she was going to be heard. Uh and and anyway, there were expressions of risk and you know, challenges when he moved into the long-term care home, and what it felt like to me, but I know it did for the wife who was sitting with me, was that they weren't seeing him for the individual that he is, you know, as as a person with all of his strengths and thinking about his career and how important he was, you know, in in life and his identity and what that would have meant, and being a husband and a dad. So I can I I'm not trying, I don't want to speak for you. I guess I just want to be able to relate and think that that must be so difficult, you know, even being that daughter who was telephone conferenced in, who is also in the professional world, uh sorry, healthcare profession, uh, and and feeling like you're not heard, especially from a family's point of view, like seeing for the strengths and seeing for the human that that person is. Um I don't know. I just I acknowledge that and and just want to say that must be so frustrating. And I'm glad that you're now working to try to figure this out in your professional role as well.

Marie: 10:32

Yeah, it's very much a long game, but I remember when my um, you know, finally we were able to get like the speech care, the speech language pathology care, and we got connected um with some of the programming at at Baycrest. And um, but my dad was amazing because he this is when the Wii came out, right? This is a while ago, but um the Nintendo Wii, and it had all the fitness, uh all those games that you could play, you know, bowling and tennis. And so he on his own of his own initiative, you know, brought the Wii there so that people can, you know, start, you know, helping, you know, to be engaged in movement. And so and so, but that's what uh and that's what I really think that you know in the even in the dementia care context, it's the same, it's the same thing, right? Like that people have abilities and um and ideas and in and desires, right? And what they what things that they want to do that can support their their well-being, and of course, and also the well-being of others. So that the person's personhood is still there. And so I'm such a firm, even from the my younger days to my current days, I'm still a firm believer of that concept of that, that, that person's who they are, their likes, their dislikes, their their preferences, all of that is is really still there. And it's just a matter of like trying to figure out um or give them the chance to tell you absolutely what they want.

Lisa: 12:22

Um, and having those opportunities um to do that, to share their information, right? Whether it's them and with assistance if needed from their family and the people who know them best.

Marie: 12:34

Exactly.

Lisa: 12:35

So, what have you found so far? Tell us about what you're doing now and how you're moving this idea forward on the importance of person-centered care, given the challenges and I'm sure the barriers that you've you've come to come up against.

Marie: 12:51

Yeah, so you know, I as I mentioned my areas like dementia and communication and caregiving. And so we've but it's not just myself, but I've led a team, including uh persons with lived experience, but and caregivers, family caregivers, but also um professionals in home care, long-term care, and in community care. Together with this team, we've created uh Be Epic and Be Epic VR, um, which are uh which is a person-centred communication training. And right now it's focused on frontline care workers, but I don't think it's limited to that group. I made the decision to focus on that group first because I think they needed it immediately. Right. But not to say that it's not relevant at all to family caregivers. I think it absolutely is. But uh, you know, when you had to make that decision, okay, you who and this was during the COVID years, like who really needs that right away?

Lisa: 13:58

It was the um people in long-term care and the people in the yeah, organizations that need that support. Plus, time is more crunched. We hear that a lot, and it's true with the staff to resident ratio, if in long-term care, you know, and in retirement homes, hospitals, like everywhere. I know that that time is a factor. Um, and then it it leads to, even though everybody comes with the best intentions and are very compassionate, at least in my personal experience, um, you think you're coming from a good place and are compassionate, yet there's always room to do better with more information about the individual.

Marie: 14:39

Yes, and so it's uh exactly that. Everyone's only on the same page. But it's this so it all this this um the creation of B Epic VR really, you know, started what a long time ago, but there was a seminal, like not a seminal paper, but a like I had this wonderful opportunity to record conversations between frontline staff and um residents in long-term care, and also frontline staff and um clients in home care. And it was in those recordings that we could hear um the good, right? Where people actually were person-centred, um, but also what I call missed opportunities. And so these are just these small like uh opportunities, like where they, you know, like let's say a person living with dementia said, Oh, you know what, I I just turned 80 yesterday. And then, you know, the and then through these recordings, we just heard that the staff person was like, oh, okay. And then they just kept kind of going, you know, there was an opportunity, there was a missed opportunity to say, right? You know, you could say all kinds of things. What's your favorite type of cake? You know, all kinds of questions could arise, right? So I would call those like omissions, they completely missed the opportunity person-centered. But then we also found this other pattern where they said something, but it wasn't person-centered, you know, it was potentially patronizing or a testing question, or something that, you know, they really should not not use. But then, and there was another finding that I found kind of hopeful is that like uh hopeful and problematic. Hopeful was that you know, these were untrained staff and they were using person-centred communication. So that shows that they have they can do it, it's doable even when you're in a rush. Because we would actually get up early in the morning from to record morning care, and then we come back later at 6 p.m. to do the the evening care. So we know what that those times are very rushed, right? So the fact that people can be person-centered even during those rushed situations shows that it's possible. So that was like a wonderful thing. But then I noticed this pattern because we we really look like line by line, like what's what are people saying? Uh, and we noticed a pattern where they would start off person-centered, be like, oh, hello, and uh, but then after they did like the quick baby hello, they would get right in right down to the you know, quote unquote task, right? They would focus on okay, move this way, and you know, more directive communication. And so I I was like, well, this is really useful information because now we can um give the examples of where we see these missed opportunities. And so that's really what I used to create the content and then um and then like the the the way that we would deliver uh the epic was really based on what we noticed in in terms of these, like when people were person-centered and when they were like consistently missing these opportunities. And and I what I think is useful about this strategy is that it's tangible, it's like you know, easy, what I like to call tiny tweaks, small changes that you can make immediately that have an impact. And so when we created the epic and then later on the virtual reality version, we wanted to really stress that, okay. Um, and in the in the VR version, you know, as soon as they make that tiny tweak, you'll get, you know, maybe a better reaction from the answer. So you so you get that immediate reinforcement that you're on the right track. And when you're when you're you know not so person-centered, then we very gently with a lot of kindness, uh, you know, give feedback that you know that like the system will give you feedback. First of all, actually, the avatar gives you feedback on you know whether they liked what you said or not, right? So it really forces the person or encourages the person to pay attention to the the avatar with dementia. You have to really focus because they're going to give you lots of clues about what they like and what they don't like. So the and that's like the C and B epic is like, you know, um look to the client or the resident or the person, you know, it's look at like they will give you lots of clues about what they are able to do, what they, you know, may have difficulties doing. And that's one of the things that we found in that original research study with the recordings. People people would tell you there were so many clues that were just being mixed. Yeah. Yeah.

Lisa: 20:00

Wow. So okay, just a little bit of a uh summary so that I make sure I understand and that the listeners understand. So the Bepic VR is where when you wear one of the VR machines or whatever you want to call it, devices. Headset, thank you. When you wear the with the headset, and then so you're able, the PSWs working in say long-term care, would be experiencing their interaction with the avatar, and the avatar being, say, a resident or a person living with dementia in wherever they're working. Is that correct?

Marie: 20:39

Yes, yeah. So how it works is first, um we uh teach, you know, what is person-centred communication? What does it look like? What does it sound like, and what does it feel like when you're when you're you are person-centred or when you're receiving person-centred um care? And we do that through um an asynchronous module. So we you actually learn first in 2D. So we have we have videos, we have lots of examples from the research studies that I've done where we we actually have like transcripts of communication, um, and we have videos, we and so you can really see it and hear, you know, what that what it sounds like to be person-centered, and also what it sounds like when you're not person-centred. Right. I think that you know, what to do and what not to do are both useful. Uh, and then we also teach about stigmatizing language because we also did this other study where we um kind of just asked uh frontline staff, you know, tell us about a day in the life of caring for a person living with dementia. And while they were sharing that, uh, we would hear a lot of uh communication that stigmatizing. But I don't, again, like what you said earlier, people have very good intentions. And sometimes we we we all make that mistake, right? We may not know that you know, saying a poopy diaper is it's stigmatizing, maybe because in that the context of their workplace, it's been used like for a long time. And and so we've so we use anything, anytime I do a research study, and there's an important find, we put it right into to the BF VR asynchronous module so that you can you can learn about it. And one of the important pieces for me um is that you you learn in a way that you're just open, you're and you don't feel you're not um made to feel bad if you didn't do something right or if you didn't know something, because we're we all make mistakes in our communication and we shouldn't feel shamed um when we've messed up, like oh, that was not person centered. We you you know, you can just say, oh, that's an opportunity to grow, right? That right and and where are some opportunities for that you've shined. So I'll I'll get into that part uh next. I got all excited.

Lisa: 23:08

That's good. Get excited because I think these this is so this is so helpful. And I just want to before you because I want you to go on, I just want to mention that I think what you just said about not feeling um, you know, judged or bad for saying something the the wrong way, seeing it at more as a learning opportunity is so important because we talk about that for the people that we were working with, people living with dementia, that it needs to be, we need to be in a judgment-free setting, a failure-free environment to ensure the person feels comfortable and safe, right, to to share through communication as well as whatever activity they might be doing, that it's done in a way that there's no wrong, right? There's no wrong way of doing it. Where I think what you're saying is so helpful for us to remember. A lot of the listeners are either healthcare professionals themselves, including PSWs, as well as storytellers and the artistic people. And I'm trying to bring those worlds together. So I think it's really helpful to hear you say, it's validating to say we're all going to make mistakes and we're never, including family members, we're never gonna get it right all the time. And so that we need to stop shaming ourselves from that and just learning from these opportunities to grow, like what you're providing.

Marie: 24:31

Yeah, and so that's that actual style of um of like not judging is really key. Um, and it plays an important role in the content, um, but but also in the delivery. And I'll get into that, like what's involved in delivering um be epic next, as when I go right into the VR section. So so here you are, okay. I'm gonna bring you back your in 2D right in front of a computer, right? And you're you're learning and you're you're learning about person-centered, what to do, what not to do. And now it's time for you to take a little break and then put your headset on. So you put on this headset, and you you are with um with a little group. So we do this training in in groups right now, it's in groups of four, um, but it that can be adjusted. Um, but there is a B epic facilitator, and they and you also have peers. So you'll have a peer watching. So one person is learning by observing and giving feedback. So this would be the peer. Uh, and then the other person is learning by doing, right? So they just learned in 2D. Now they're going to learn by putting the headset and actually talking to the avatar. And so we were able to, and then they they will flip roles so that the person that was watching is now doing, and the person that was doing is now giving kind feedback. So they learn how to give feedback and what really underlies that whole facilitation and and and also the the sharing of feedback of that peer feedback is this call concept of cultural humility. And so, unlike cultural competence, which sort of that implies that you've mastered the knowledge about the other person. Unlike that, cultural humility is something that acknowledges that we can never fully know somebody else's experience, but we're always striving, we're always like go approaching a person with an openness, a curiosity, like a real genuine curiosity, um, and respect. And you're always kind of checking in with yourself, you know, checking in with your assumptions, your your you know, biases that you might have, right? You're just always like checking, like, okay, am I, you know, being ageist, for example, right? Right, uh, you know, um, or ableist, right? All of those things you're checking in. That's what cultural humility is. You're going, it's this concept of lifelong learning, your openness, curiosity, and kind of sort of critiquing yourself ever so gently, right? So in a in a kind way. And so that thread happens when they do the peer feedback, and but also the way that the epic facilitators they're trained to give feedback in that way, not that everybody knows everything about any, you know, we're not going like that's the good style. Yeah. It's going with that really with a humble approach to giving feedback, but also a humble approach to learning about the person living with dementia, um, who are the the avatars in our case. And then, but you can also use it in real life with a real um, you can use it really with everybody, you can use it with your your peers, you can use it um with your residents, clients, relatives.

Lisa: 28:23

Yeah.

Marie: 28:24

So that's really interesting. And then what happens is okay, now you're like, I'm gonna bring you back. Now you're you're in the headset. And um, so we use conversational artificial intelligence, and that enables you to talk with an avatar, like we are talking now, right? Where if I say hello, Lisa, my name is Barrie, you know, you and then you and then you'll respond. You're already responding with your nonverbals, right? And I'm paying attention to that.

Lisa: 28:52

And so I'm nodding, everyone, for those who can't see us. Yeah, yeah. I'm nodding as she's talking and very excited about everything.

unknown: 29:00

Yeah.

Marie: 29:02

And and so um you really get to now, you have to respond, like, you know, it's not just pointing and clicking, you know, it's not uh, it was very intentional for me that it wouldn't be like multiple choice, like you here you are in VR and now you choose option one, two, and three. I because our the focus of our program is communication. So the best way to practice is to actually you know communicate with a person, right? With with one of our with our avatars, and so you go in and you say something, and so this is another example of how we've built it so that it's there's a lot of like kindness and gentleness, and that that the cultural humility is also built into how we designed the training program. So you go in, you say anything, and then the and the avatar will give you the clue first, right? If they understood, they will you. You can continue the conversation. But if they didn't understand, they'll let you know. Or if they didn't like what you said, they'll let you know. Um, they may also not be ready for what you said because maybe they're still waking up and they're tired. So they'll let you know. So we really want the person to focus the like the learner to focus on the person living with dementia. And that's one of the reasons I really wanted us to do this in VR, because I get, you know, I like many people get distracted easily. And but when you are in VR, you it's hard to get distracted because you you gotta just focus on the person.

Lisa: 30:40

You're immersed, right?

Marie: 30:42

Yeah. Okay, so so you you're going into VR and you say something and the avatar doesn't understand, right? And you or you you've said something that the avatar is not happy with or didn't understand.

Speaker 2: 30:58

Right.

Marie: 30:58

So you will get a clue, of course, from the avatar, but you'll also get a clue from the system that we've created. And the first clue is very broad, it's on the person-centered level. So we we teach, you know, it's all comes from the work of Tom Kidwood from the 90s, like, but we teach the four these four strategies, you know, to recognize, facilitate, negotiate, and validate. Uh, but they're so broad, right? I I think they are. Um, but then so but but you can try because we've already taught you, we've given you in the asynchronous module lots of examples of what you could do using any one of those strategies. Okay, so then we let's say the person kind of doesn't get it right, right? Uh, and the avatar still doesn't understand or doesn't like what you said. So then you get another clue, and now it's more specific. It's on the language-based level because that's one of the things that we've done is we've gone into the literature and looked at, okay, what are some language-based strategies? You know, maybe the way that you ask questions, the types of questions, or the way you start up a conversation. Well, you know, we we share a lot of strategies in the asynchronous module. So then it'll give you a clue about one of those strategies. It's like, oh, you know, maybe you can ask for for clarification, you know, by saying, Do you need duh dah dah? So then so then you get to try that strategy. And some people, you know, they'll get it and it's wonderful, and the conversation continues. But let's say they didn't get it right, you know, maybe they were nervous. Then we actually tell you, okay, say this, you know, do you need this photo? And sometimes, because you know, people are new, it's in VR, and they're people are nervous. I get nervous. And so it's really built built for somebody like me who's like worried and set them up for success. And so, so then we uh if they mess, like they just didn't say it correctly, or they just got nervous, then what'll happen is the the system will say, Okay, you gently, you you know, you missed an opportunity to be person-centered. That's okay. Here's what will happen if you said it in a person-centered way, and it continues that way. You're not sometimes you get stuck in a rut in that one, uh, and you won't move um through. And in the simulations, you know, you learn, okay, you've got to now use person-centered communication to get to know the avatars, right? They have a personality of and they have a sense of style, like I filled them with you know, some character, and um, they have a backstory and a life history. And um, and then you also get to know, you know, they they may one of them may express grief. And uh what do you do when somebody is, you know, remembers that their um their husband has passed away? A lot of times the the learners that we've that we have like tend to distract, you know, that's like, oh, should we go for a walk? Do you want a cup of tea? You know, it's like distract, distract, and yet that unmet need, right? That you gotta figure out what is it that that you know, and it's okay to go in and acknowledge grief. We're so afraid of grief, right, in our society. And and I think it's it's so good to be it's it's okay for somebody to to cry, and it's okay, like if a person is crying, it's not a it's not a behaviour, it's like a normal reaction to something.

Lisa: 34:49

It's an emotion. We're allowed to have emotions.

Marie: 34:53

Yeah, and so and that's one of the things actually that that comes up a lot in the facilitation, right? That that you know, maybe they were trained to kind of distract, but we're saying no, but then you'll still that sort of quote unquote the responsive behavior will still be there because you haven't acknowledged that the grief and just validating and talking about the who that person that they've that they miss. That's right, yeah, will can oftentimes be sufficient, right? To uh to kind of move it forward. And so we're able to do this like very difficult scenario in VR, which is um, and what our participants say is like they they like doing the tough things in VR because it helps them feel a lot more confident, even more than working with our, we used to do this with live actors, but I think there's always a little bit of worry with a live actor. Um, whereas with an avatar, you know, they can mess it up and it's it's okay. The avatar bounces will bounce back.

Lisa: 36:02

It's okay, but yeah, they're not gonna have their feelings hurt. Yeah, yeah.

Marie: 36:05

They I mean they do get their feelings hurt, and you'll know, but you know, but they think, you know, we can always reproof. We'll get through it.

unknown: 36:13

Yeah, yeah.

Marie: 36:14

Yeah. And so, you know, when and we do a section, uh, we also teach how to use person-centred communication with like with delirium, and that's really difficult because there are hallucinations and and delusions that people find really, really tough. And and it and it is tough, right? That's the reality. It's uh if you're not trained, it's it can be um challenging. And so um we make sure that uh people feel because they're getting the clues, you know, throughout, um, and they get reinforced, you know, they get a nice ding and a check mark when they do well, they actually stay till the whole thing and finish it and feel confident. Whereas when we used to do this version in person, people, you know, you can quit at any time in both VR or in-person simulations, but people will always quit before the halfway point for in person. But when it's in VR, nobody quits. Oh, yeah, that's a you know, unexpected, wonderful find that we that we that we got. So you really learn by doing and you learn to give that feedback, and you go in with that humility in giving the feedback, but also in communicating with the um with the avatars. So that's like the essence of of the epic and being.

Lisa: 37:43

I love that and I love the fact that the fact that it's VR, one, it's current, you're using the modern technology that we have to to our benefit to help with healthcare, and to be able to practice these communication and approach ideas or strategies and problem solve without actually, you know, hurting somebody. When I say hurting feelings, I mean like an actual human, the the AI or sorry. Yeah, the avatars. Yeah, the avatars are allowing us to to practice in a safe environment so that when we get it wrong, we don't have to feel silly or dumb, you know, especially the way that you've created it to help us feel that way, I think is so smart. Um, and I'm guessing too, what you were saying about that nobody has stopped and they all complete it. I also wonder if there's a piece of I think what they refer to as gamification, where you actually there's an incentive on like you did something right, so you get to continue, or you didn't do it right, so I need to fix it. That being able to do it again and do it again, you know, until you get it right.

Marie: 38:55

Yeah, they really like that because uh because other if we didn't have that, which uh in our assessment simulations, they don't have that because that's that's how we assess the the impact of Be EPIC. We have people in a simulation before the training, and they have in the and then they're in the same simulation after the training, but with no help. Um, and it it is difficult, right? When especially when you haven't gotten training, right? And you're like, uh, what do what do I do? Um, but then we we've seen this significant increase in like the actual person-centred communication um after the uh you know after the training compared to to before. And also we've tested it with a group that got the training right away and a group that didn't get the training right away. Okay. And so the group that didn't get the training, you know, uh when they didn't get the training, there was no change. And then once they got the training, there was a significant improvement in person-centred communication. So that is like for us our gold standard outcome. Um, but we also, as part of this project, we had um we first actually started with the managers of PSWs. We wanted them to try Be Epic first. Okay. Because, you know, they're the decision makers, right? They're the ones who say, okay, I think this program is good. You, you know, PSWs, you can take this program. Um, and so we did this study that was longitudinal, right? So, you know, we interviewed the managers before they got the training, then they then they got the training, then we interviewed them after, and then five months after, and in between the post and the five months, we had some of their staff take the training. So that when in the five-month follow-up, we can really ask, like, okay, so you've had your staff take the training. Did you notice anything, any changes in them? Right, and they did, like they they noticed like confidence for sure, but they also for for me the most important confidence is key, it's just the ingredient you need, right, to make a change, but they also saw that there was an improvement in the the actual care. You know, they were taking the time to listen. That's a big thing that we teach in Be EPIC. I know the thing is it seems like a small thing, right? And then like something we all should do, and we know, but then we all we sometimes don't do it. And and when you're working in VR, it really um encourages you to you gotta you gotta just

Lisa: 41:43

you have to pay attention and listen.

Marie: 41:44

Yeah, we always say at least at least if you can wait five seconds, it's ideal, but if it just at the minimum, like three seconds, just wait, wait for the person to process the info. Yes, yes and you'll get the re the answer that you're looking for, right? Just to do that. So um I think that's like the most humbling for me, right? Is to see the the um what people are saying, you know, about the epic after they've taken the the training, what their managers are saying. Um and one thing we've noticed is that it's the knowledge to practice. So of course there are other trainings out there, and I'm very respectful of the trainings that are out there, but I think one of the things that PSWs are uh and their managers are telling us is like it's not enough to just have the knowledge. Um, they have to, we have to see the the change. And yeah, yeah, and they're not really seeing that um on the on the floor. So that's uh but I think what our PSWs are telling us is that they really like that they get to like practice it at least now with the avatar, and they feel a lot better about you know making a making a difference. And even in one of our older studies with the original B Epic, we had um we had a story of one PSW. Um they um she used to also always help um with uh bathing for a gentleman, and they would always give him a drug, always. And uh before um before care. Yeah, before care. Um and so she this was amazing because she had the confidence to to tell the nurse, like, okay, can we just try without the drug this time? And it worked, right? Just using but you know, because you don't always have to uh you know use medications, you know, when you're providing care, because maybe it's the approach, and that's what we're seeing, even with the critical incidence uh reports, right? There's there's I think a lot of uh opportunities where you could have provided the care using person-centered approaches instead of unnecessary medications or restraints.

Lisa: 44:15

Yes, yeah. And you might say, like in say in documentation, I think staff could say, you know, I we tried this, we tried that, you know, we did, we did the best we could. But that the best is your best, but with it sounds like with your training, we're able to learn even more that we wouldn't have considered otherwise, right? Before it increases our awareness on what you can do in a situation and what we might be missing. And so a different way to do a different way to do things altogether that you can only do the best you can do with what you know, right? Or if we increase our awareness, we can do better.

Marie: 44:55

Yeah. And I think part of it is that that reflection, right, that you get when you do it's that that facilitation. We have like a system for to do the facilitation and structure. But I I think that's what helps with the reflection, because otherwise you're just doing it. We don't want anyone to just do the training. You gotta like really, it's not really just training for training's sake, right? But I think for us, like one of the most wonderful findings, besides the impact on like the person-centered communication, is that um several of our staff told us that it makes the after taking the program, they remember why they are in the profession in the first place, right? So that's like the personal and professional growth, which is more than we were anticipating. Absolutely.

Lisa: 45:47

Yeah. That's incredible. That's incredible. I have a question, maybe on that note, because me too. Like the reason I went into it is because I did a co-op placement, my high school co-op placement in a long-term care home. And I just loved the interactions that I had with the residents there and learning their stories, and then, you know, like just being curious and trying to develop activities around who was there, you know, who was living there and knowing them as individuals. And that's really what kept me going at points uh during my teenager years. Um, but but having said that, I I am curious about with your Beepic program, you said that every all the avatars have a backstory, like they have their own social history. I'm curious to know about how is that learned by the people doing the learning, like the PSWs taking the training. Do they get to learn about those individuals before they do the the next steps?

Marie: 46:52

Okay, so um this was a very interesting. I'm I'm really happy you asked that question because even when we were building Be Epic VR, I was working uh with a I mean I'm still working with a wonderful team, and and they were like, oh no, we gotta give like a lot of information before they go into the simulation. Um, but they were not part of the original Be Epic, you know, with when we did it with our with our actors. And one of the things that I learned with the in the original Be Epic was that many staff go in to provide care, getting little information. It's not that they like they may want info, but they get very little. So I was very deliberate when we created B Epic VR that um the scenario was true to the real life working conditions um for for our um care providers, whether they're in home care or long-term care. And so they go in with very little information. So they they get to they know the name and they know just like where they're from, a little, very, very, very little, and then they go in. But then when you go into the to the room, there are clues, right? Because the E in B epic is like look around, look in the environment. There's lots of clues, right? About who, like what what that person likes and dislikes, and so through the environment, you get to learn a bit about their personality, but also um they will tell you because sometimes that they will reveal, like, oh my gosh, like one of them is in a rush, he has to get to work, kind of revealing what she does in a but you have to kind of dig, like it's not that apparent, right? But you have to go kind of sleuthing for okay, all right, okay. She cares about her work and she's okay, she's we gotta get we gotta get her to work. So let's help her if she won't if she's interested in getting some help with being dressed. So they so and and one of them wants to pray, right? Before it's like, okay, no, no, I gotta like not doing anything, not gonna go out for coffee. I've gotta, you know, attend to my religious needs, right? So there's uh so there's there's clues. All I don't want to give away all the clues. There's there's clues um throughout the simulations about about who they are, also what they value, um, you know, if they value family or they value work, right? They you know, their memories. Um, and like at one point, one of them likes disco, you know, there's like they're fun. Yeah, I make sure that they're not stereotypic.

Lisa: 49:55

I love it. That's awesome. So that yeah, you have made it pretty real then, where people, you're right, that unfortunately people go in and they don't know a lot. And sometimes I think that is setting us up. I say us as healthcare, you know, staff who are trying our best to support the people we're working with. But you're right, a lot of the time for time's sake or just rushing that you don't have that information. Um, and it's it's not always easy to access quickly when when tasks need to be done.

Marie: 50:31

Yes, yeah. And so, but then what can you do, right? It's not that I want to perpetuate these bad working conditions, but that that is sort of a a reality. And uh we're trying to say, okay, yes, we know your rush and we know you don't always get that information, but you know, you actually have a a wealth of information when you're with the person living with dementia and their environment. And of course, we in the in the facilitation we also share the importance about the fit about the family. The the family will can give you all the clues you need, um, uh, or or or much of the clues, right? About that person. And that's a that's also a missed opportunity if you uh don't get that connection with the family.

Lisa: 51:19

Wow. This is really incredible. I'm very excited to learn more about this, and I know that I'm gonna be digging after to look at the website and learn even more. And it sounds like um the avatars that you've chosen would also uniquely help us to understand a little bit more about diversity and knowing that there's differences based on culture or various beliefs and values that each individual would have. And so it's not the same cookie-cutter answer that's gonna work for the first avatar that it would for the third avatar, for example.

Marie: 51:53

Exactly. And so that that's one of the things that we did notice. Um that, you know, what okay, so we have two avatars currently. James is a white man and Nala is a South Asian woman. And um so we they were intentionally created because you know, James represents the the biggest race in in Canada, and Nala represents the largest, like racialized group in Canada, this the South Asian population. And one thing that we noticed when we were conducting our research study is that some people would feel more comfortable with James. Uh and they did say because he's quote unquote Canadian, and they felt less comfortable. Yes, they felt less comfortable with Nala. But whereas some other people will feel more comfortable with a female than with a male. And this is something that gender difference we sort of noticed when we were doing the in-person version of P. Epic with our actors, but then the but we there were no differences in terms of the racial diversity when we did it in per in person. But we have that racial diversity when we're doing it in uh in VR, and so we're getting some indication uh about maybe some implicit bias in communication, and so I see this as an opportunity to see, okay, well, can we use virtual reality and in specifically like Be EPIC VR? Can we use it to detect if people speak differently to our avatars based on the race and gender? And so to do this, uh, we can do this, uh, but not just with two avatars, the ones that we have. We have to build another two. So we have to build um a woman who is white and then um a South Asian man, and then we can really see okay, our people, do we see this these differences in person-centred communication based on gender and the the race of our avatars? And if we do see those differences, then the question is well, can Be Epic be the change that we want to see? Right? Can Be EPIC actually address those disparities in person-centred communication, especially because our approach is person-centred, which means you have to really treat the person as an individual and also know who they are, their life history, but also acknowledge that they their particular gender and their particular, they have a particular racial identity. So those are important. But also, we also have that cultural humility piece, right? That's built into the delivery and really how you are being person-centred, right? To be person-centred and be open to being person-centred, you have to have that cultural humility, not confidence where you know everything, but that or um but you implies mastering it, but that but you're but the humility saying, No, I don't, I know I'll never fully know that person's experience, but I'm going to go into all my interactions and VR with them with that openness and that curiosity. So what we could see is that after they get the B epic VR training, we could see that there are fewer or maybe no differences, you know, after they do uh the training in terms of person-centred communication. So that's what we would really like to do in the future is really, you know, can we use VR and B Epic VR to address some of these like difficult um questions about disparities in healthcare.

Lisa: 56:04

Wow, that is so smart. I think first of all, I had never heard I've heard of cultural competency, but the cultural humility is new to me. And I love you breaking down the difference between the mastery piece and humility, just being open to learning. I resonate very much with that because I I'm just gonna say that I think I feel bad if I don't have the answers or if I don't know everything about the person's culture, but I don't think that's I don't think we're really expected to know everything, is from what I'm gathering you're saying.

Marie: 56:41

Exactly.

Lisa: 56:42

Is that it's just a matter of being open to learning and maybe then I guess what I feel strongly about even with the videos that I create is learning enough for you to be curious to then learn more, you know, go on and learn more and be invested in knowing that person and doing the digging that you need to do to help better their care, however, you can, like to be as supportive and develop, like foster that relationship as as best you can with the increased knowledge that you have. But you have to be interested in learning about it and open.

Marie: 57:18

I couldn't have said it better, Lisa. I feel because you you really captured what I was wanting uh for that humility piece because what I because I have seen just in these, you know, especially since 2020, where the the issues about race have really emerged, right? And I but I've also um seen like people being afraid, right? Afraid, afraid of making a mistake and saying the wrong thing. And what I'm saying is like, no, and then what what happens is when you're afraid, then you don't engage. And then you're like, okay, everybody's in their little bubbles, right? And you're and so, but as a but as a care provider, you know, you don't you're gonna be meeting all kinds, you're gonna meet everybody, everybody's gonna need care, whether it's at home or in a more formal setting. And we're going to see, and we are we are actually already seeing it. It's not that we're going to see it, we're already seeing um, you know, people needing that care and open to receiving care. Um, and so when they do that, I do I really would not want them to say, oh, I feel more comfortable with James and not Nala. But they have said it, and so okay, so now let's let's see if we can, you know, address that, right? So we've we're already seeing some indication that okay, people are a little bit nervous, you know, before before, but perhaps but then after they meet them, they'll get to know them and get to know who they are and respect who they are and kind of see what we all have in common. Uh and then, but also what makes us distinct, you know, our our life history, but also the the the uh other identities that we have.

Lisa: 59:04

Yeah. Yeah, absolutely. There's so many commonalities that we have if we just take the time to stop and listen and consider what they are, right? Like we we might come from different backgrounds, but we all have similar roles, whether it's gender, whether it's single, married children, like whatever it is. We're made up of so many different things that we could connect on on a personal level. And to me, that's what it's really all about.

Marie: 59:32

Yeah, and use that, like use the connection to connect.

Lisa: 59:37

Yeah, yeah, yeah. Oh wow. This has been such an informative and helpful conversation. And I I know that we're a little longer than maybe typical, but it's been fun.

Marie: 59:50

I didn't even look at the time. That's what it's all about. Thank you. I appreciate it. I was nervous, but I really appreciate it.

Lisa: 59:58

Well, Marie, thank you. You so much for spending this time. You shared so much information, and I really am strongly going to encourage people to look at your research and be epic to find out more, whether for personal reasons, whether they have family, whether they're working with somebody who is living with dementia, um, in a storytelling role as well as in a healthcare role, because I think there's so much we could learn from just thinking differently and knowing that we're never gonna know the whole person. So you've opened my eyes to think about, yeah, this I think about like we need to inform everyone and try create these videos. And I still believe that in a sense, but in all reality, you're right. We're not gonna go in with all of the information all the time. So I love the approach on when that's not the case, or even if you know a little bit of information, you can use your environment and ask questions and do what you can with what you have in the moment uh and drawing on each other and family. So thank you, thank you, thank you for sharing today.

Marie: 1:01:04

You're very welcome. I think you've captured the essence of the ethics so beautifully just now. Thank you.

Lisa: 1:01:12

I appreciate that. Thank you. Thanks for listening today. If you enjoyed this episode, take a minute to look at the show notes for resources and links, and be sure to leave me a rating and review. And also you can follow the show so that you get notified of when the next one comes out. And lastly, if you can think of somebody in your life who you think would enjoy this podcast, I hope you share it with them as well so that they can listen in on the conversations and ponder how to capture their own essence. Take care, and I look forward to the next time.