A Conversation With Andrew Karesa From blueBell Village

Hi everybody, welcome to another new episode of The Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host, and I would like to welcome a very special guest who's with us in the studio today. His name is Andrew Carrisa, and Andrew comes with a really unique story that he's going to share with us. After witnessing how his family coped To support his grandmother with her Alzheimer's diagnosis, Andrew realized he needed to take action. This inspired him to create the Bluebell Village, aimed at restoring the personhood and independence of those living with dementia. With Bluebell, Andrew has seen lives transformed for both individuals living with dementia and their caregivers. And he is passionate about fostering a world where care is tailored to each individual's needs. Additionally, this ambitious young man is pursuing his doctorate degree at the University of Calgary, where his research explores Indigenous entrepreneurship in the health sector. Andrew also holds an MBA from the University of Alberta, and before founding Bluebell Village, he worked as a practicing engineer in the energy sector. And one last thing, this is, uh, pretty unique. Andrew is a member of the Muskeg Lake Cree Nation. And a proud husband and father of two young sons. Welcome, Andrew. So happy to have you here today. Can't wait for you to share your, your amazing story with our audience today.

Thank you for having me. Thank you for the, uh, the invitation, Lisa Skinner Skinner.

You are so welcome. It's a pleasure to have you. So why don't we just dive right in and tell us, you went from being an engineer, and then you had a personal experience in your family with dementia, and that somehow changed you. So why don't you pick it up from there and let us know how all of this evolved into what you are doing now?

You know, it's funny, Lisa, is that I never really wanted to be in health. I actively was Avoiding it. So like you mentioned, I have a master's in business from the University of Alberta, and I specifically looked at strategy, and that was kind of my specialization. And in it they have these career tracks or specializations where you get industry experience while you're working. And what was funny is that this is an elective process, but in the process of doing my MBA, I was nominated to lead the public health and, or the public sector and health industry segment. And which, which is funny considering I was a practicing engineer in oil and gas and I had a leadership consulting firm. So absolutely nothing to do with health, but everyone's like, this is where you need to be. This is where we see you. We, we nominate you for this. I'm like, I want nothing to do with this. No, no, no, no, no, I'm good. And it ended up being a bunch of back and forth. I ended up refusing to do it. Cause I'm like, why would I do this thing? I have nothing to do with health. I want nothing to do with health. And It's funny looking back years later, it's like, hey, that probably wouldn't have been the worst plan. But you know, we kind of go about it in our own unique way.

Right.

So like you mentioned, I'm an engineer by trade. So I, out of high school, I took engineering and did the whole engineering route, worked doing a lot of design work for some large refineries around the world. And so I'm very black and white. 1 1 is always 2. 2. And that's how my mind works. And when we were approaching my grandmother's dementia care, I expected that same level of logic. I expected that we would get a clear diagnosis, we would get clear, definitive, repeatable steps, and a predictable outcome on the result. That's what I was hoping for. And ultimately, I noticed that that wasn't the case. So Because of that, I was like, we need to do something different. And that ultimately led to the creation of Bluebell. So my family was, you know, fortunate enough that we didn't have to put my grandmother in an institution or one of these memory care facilities. Instead, we could care for her at home with our family, which is truly a blessing.

So Bluebell has definitely evolved from what you originally created. So the first version or iteration was you called Bluebell Village, right?

Yeah, so my grandmother's care was really derived on the idea that, you know, we have these family looking after my grandmother, and it wasn't, it wasn't always working great. And so one night while I was watching videos with my wife, we, you know, saw the whole YouTube thing came up, and there's a video for the Hogewijk, which is the dementia village in the Netherlands, and the idea that in this isolated community, everyone can live together. We can live normally, not like conventional memory care facility that looks like a hospital with, uh, little flowers painted on the door or whatever. Like, it is a community where you can walk around and you can go to the general store, you can go to the coffee shop, you can get your hair done, whatever you want to do. You live a normal life within a safe community. I was like, why don't we have something like that here? And so we started this company called Bluebell Village to support and try and build one of those. That was my dream, my aspiration. And as a late 20s engineer with a, at that point, almost an MBA under my belt, I was like, who else can do this thing? I got this. I will do this. There was a lot of humbling that happened over the years, but I built, that was my dream. I was like, I want to build this thing to support my grandmother. I want to build this place so that my grandmother or other people in my family have a safe community that they can go to. And that was kind of my, my dream. And so the company was named Bluebell Village because my grandmother's name was Shirley Bell. Her favorite color was blue, and her favorite place to be in this world was in her garden doing gardening-related things. I never picked up the gardening trait from her. She tried, but it did not carry over well.

I am such an advocate of those villages that you're talking about in the Netherlands, right?

Yeah, that was where the first one started with the wonderful folks, the Dutch folks there. But the idea is really spread. I mean, we have one definitive one here in, in Canada. Okay. And yeah, the Village Langley, and it's, it's truly remarkable how they've made a change. I mean, I tell this, I tell a story in my, in my, my TED Talk that there was a guy named Don, right? And Don was a lawyer. He didn't want to be there. And the, these communities were able to adjust his care based on what he needed, to the effect of Don was a lawyer, right? So he was logic, argument, control, that sort of thing. And he didn't want to be there. He would introduce himself like, my name is Don LLB, if he My best friend is Sue, and if you don't let me out of here, I'm going to sue you. Like, that was Don's mindset, right? Pretty crazy in a dementia village, right? Like, he still has that level of cognition to like challenge you and say, I shouldn't be here. Well, so Don was kind of in the village Langley, so dementia village in Langley, British Columbia. He was walking to the general store and there's a working wood shop on the side. Like one with, you know, a whole woodshop. And they were making these little Christmas trees for the community kids. And so he ended up making this thing and, or they were making this like Christmas tree and he walked on in and he looked and said, "What are you guys doing?" And they go, "We're making these Christmas trees." And he goes, "Can I help?" So they gave him a little bit of glue and a little bit of paint and he made this tree and then he left. But then he came back again and again and to the point where he ended up becoming a member of the team in the woodshop. Initially, they just gave him a paintbrush with some glitter and paint, but then they gave him, you know, sanding blocks, measuring tape, to the point they gave him drills and saws. It was pretty wild for someone living with dementia in the dementia community to have this level of autonomy. And I think that speaks to the brilliance and beauty of these communities, that instead of saying, hey, this is how we're going to control you and keep you safe by prioritizing safety, they prioritized the person and said, let's build your care around what you want to do. Let's build, let's build everything around what you want to do and then adjust the care and the planning to ensure you're safe while doing those things, right? A person living with dementia using power tools like drills and saws would not pass a risk assessment and a liability framework consider that bad news, right? But these dementia villages are finding new ways to to be novel and to make changes and to focus on the person. And as my grandmother's care was going, I was like, that's what we need to do. That's amazing, right?

Love it.

And so we started going down the road and we went down the road for probably about 2 years and we had some investment stuff lined up. But I'm very much of the mindset that I, if I'm going to do it, I want to do it with the right people. That believe the same thing as me. I don't want to do it where I am going to, you know, shift it into a real estate ploy where it's, we're, we're focusing in on the not— or I guess I want to focus on making the person first. So I want to make sure that people focus the same as me. So that's the first thing. And secondly, we found that this was right around middle of COVID so you saw everything was getting very, very complicated economically that ended up just not working between whether it's the cost to build things. In Alberta, we had our Alberta Health Services was kind of breaking up into a handful of different government entities. So it was just super complicated that we ended up saying, you know, we need to table this for later because the system just wasn't equipped. I mean, it's a great idea, works great., but it's expensive. And if you're not gonna do it without the government support, like you, you, you're gonna have a tough time, especially in Alberta where you pay $2,200 roughly a month for a publicly funded dementia facility. And, but if you're doing a dementia village like this, the Village Langley is like $11,000 a month Canadian. So it's a, it's a steep price increase, but the families pay cuz they, they care about these things, right? But it really, if you want to bring people in and want to make a movement, you need to get the government alongside. And unfortunately, our government just wasn't alongside provincially, which runs the healthcare, the provincial healthcare. They were going through a breakup. The band was breaking up and Alberta Health Services was a mess. People didn't know what was happening. And then federally, they were just pushing it back down the line to the province. So we're kind of just stuck in this weird position. Me being me, I'm not going to just sit and wait for anything to happen. So while it was going on, I built this tool on the back end of my desk called Bluebell Connect and really does two things. One, it communicates the care and information transfer between all members of a care team. Care team being family members, home care folk, companion care folk, all these people that are caring for our loved ones. How to ensure that they're on the same page. Oftentimes, I'm sure you have heard, Lisa Skinner Skinner, that my company uses blank, this other company that's worked— that why hire— they're using a different software, they don't communicate, so I'm stuck in the middle communicating. Maybe I got, maybe I got this binder. I hear the binder all the time. I get a binder that, that stays in the room that has all information. One, security is terrible on a binder. I, I mean, I lose things all the time, so Not great, right? How— and that assumes they're going to look at it. That assumes that they can, you know, actually put stuff in it. It doesn't always work well. So we built this tool that really allows all these people to communicate together. Oftentimes we work on like all these caregiving islands. So everyone is doing what they think is best and they're working as best they can. But nobody is communicating. If they are, it's through one single entity. My family's case, it was my aunt. My aunt is lovely and she was trying her best, but that's a big burden when you have multiple companion home care companies coming in and multiple people coming in to try and communicate all these pieces and juggling, determine what's important. If you get all this information, information overload, how do you subjectively evaluate what's important? And so we're kind of going through this, so I was like, we need a tool that is system agnostic, vendor agnostic, that can allow everyone to communicate. So that was the first thing. Let's bridge all these caregiving islands. So that's the first piece of Connect. So if you're— no matter what home care or companion care company you use, all these folks can communicate and talk together so we can all work towards one cohesive collaborative goal. Because that's ultimately what is most important, right, is looking after our loved one, working towards one unified To make this happen effectively, don't the different, the various people from all the different channels have to actually input the information into— Correct. As of right now, we're working on APIs to go from the software, the different home care software companies directly communicate, but right now the API doesn't work yet. But that is the long-term plan.

So let's say a caregiver from a home care company goes to the person's home. Sure. You're going to have to rely on that person to enter the information. And how has that been working?

Right now, yeah. And the interesting piece here is that we find a lot of the driver for this is the families themselves. The families say, this is an expectation that we have. And especially where I am, the families are in control. There's lots of home care companies out there that are all clamoring for work. So the families are really the ones that are in control and saying, this is what we expect, this is what we want.

Oh, perfect.

If you want to work for our family, this is what our expectations are. And we've kind of aligned with that in the business model where if a family is using this on their own just to track, then the family pays monthly. But if they're being supported by, I don't know, Lisa's home care company, then Lisa's home care company would cover the monthly subscription fee and the family doesn't pay anything. So really it entices the families to say, let's bring this care teams together and work together. Because for me, that's what's, that's what's so important is that if you and I are working on the same page, but somebody else over here is doing something different, That can be catastrophic to our success. That can be catastrophic to the, to my grandmother. So let's make sure we're all working cohesively and collaboratively to a fixed goal. So yeah, that's how we kind of, that was the first thing that was in it. And the second piece that, uh, I don't even know how we got there, Lisa, but we ended up building an algorithm and we have a provisional patent on the technology right now. We're going through the, the final process to, to, to get it officially approved, but It allows people to input their personal information, being like, where did you grow up? Did you grow up on a farm? What was your education? What was your job experience? Did you have siblings? Where did you live? What languages do you have? What languages do you speak? What's your religion? These sort of information. And it can provide personalized supports based on that. So we, like I said, we have this algorithm that considers, you know, what is this person, what's important to them, and let's give supports, activities, and de-escalation techniques that are clinically valid. So for Alzheimer's, the supports are different than frontotemporal dementia. Uh, personally specific. So, um, you know, if, if, if you really like animals, great, but if you don't like animals You hear a lot about these like virtual dogs or robot dogs or bring a puppy in and spend time with this person, let me measure, right? We hear all these things. That's great if this person actually likes animals, but if they don't like animals, we're not going well. But sometimes this is the, you know, the common thing of we're gonna bring puppies in and it'll be great. Not always great, Lisa Skinner Skinner Skinner. So it considers what's the, what personal things we need to know. That's just one example. And then culture.

I can relate to what you're saying because My mother hated animals. She was— she didn't have dementia, but if, you know, she was in that environment and they brought, you know, pet therapy in for all the residents during the day, she would have had a conniption fit.

100%. And we typically just ignore it. We say, this is so cute, they love it, right? That's what we say. And then the last piece is culturally specific. I find right now, Lisa, that Uh, the two go-to activities that I hear in dementia communities are, let's do chair yoga, or if you're a little more mobile, let's do tai chi. I hear tai chi all the time right now.

Oh yeah, me too.

And I'm like, my— so my two grandmothers, my one grandmother who had Alzheimer's, her parent, her dad was a, uh, a provincial politician. He has a school named after him in Winnipeg and stuff. And so They came from England. That's their lived experience. So they're very Eurocentric. My other grandmother was born on Muskeg Lake in Marsland, Saskatchewan, on an Indian reservation. So two wildly different lived experiences. Neither of them would have done well if you said, let's go and do tai chi. It wouldn't have ended well for either of these people. But unfortunately, that is the system that exists. So We said, how do we ensure that the care providers we have, including our family who doesn't understand oftentimes the difference between frontal temporal, Lewy body, Alzheimer's, all these, you know, domains of dementia or all these kind of syndromes, they don't necessarily understand the difference between them. So they just Google and say, this seems good, let's do it. Sometimes that causes problems. And then you have these hired folks, they don't understand what the person likes, what the person needs. Or the cultural specificity that needs to exist. So they kind of just do what they think is right. And sometimes that causes problems in the puppy or tai chi example, or maybe— so for First Nations folk, eye contact is different than from a Eurocentric community, right? So for Eurocentric communities, it's very much you make eye contact and that's considered respectful. It means I'm paying attention, I'm engaged with you, right? But we see that's not the case in Indigenous communities. Indigenous communities, eye contact is not something you make. You typically would look away and you don't want to make that eye contact because in residential schools, that was something that you did not do. You did not make eye contact and you looked away. And so that is kind of normalized at this point. So you notice that when you're in, or I notice when I'm in communities that you don't have this eye contact. But a lot of the time, that's what they're taught to do when they come here and become a healthcare aide or a LPN or PCA or one of these kind of designations. That's what they're taught. That's where stuff—

You know, that's a really, really good point that you're bringing up because, you know, I am 100% an advocate of person-centered approach to care. But I think one of the pieces of the puzzle that tends to be missing in person-centered approach is taking into consideration cultural values and practices. And I think you raise a really good point because we're taught and we teach to look somebody straight in the eye, make eye contact. But in your example, that would be counterproductive for an Indigenous person.

And that's definitely— It'll cause them to shrink back and you erase that that bond.

So, I mean, that's a really important piece of information to be aware of. And, you know, we gotta— we've gotta factor in cultural differences, and people don't even really think about that as being an important component to person.

It's so complicated, Lisa, because I honestly can't expect any hired care person to know all these details, let alone the personal. Like, what does this person that you're hired to look after— you might look after 10 people on a day, you can't look at, you can't reasonably understand what's important to this person. What are they like? Where was their— what's religiously accepted for this person? You can't expect to know. So we also can't expect them to know the difference between all these sub-disciplines from specific communities, all African communities, for example. Whether you're talking Ghana, whether you're talking Zambia, whether you're talking Kenya, South Africa, the lived dynamic and experience is different. So we can't paint it with a singular brush. There's some commonalities, but not all. And so if you understand one culture, you understand one culture. Kind of like if you understand one person with dementia, you understand one person living with dementia. Same kind of idea. So how do we give caregivers tools so that they don't have to learn the difference? So in Southeast Asia, right? You have Indonesia, you got Bangladesh, you got Pakistan, you got India. And India, like, there are a lot of communities within India, right? You have the typical dominant India community, but then you got Goa. And Goa is a super interesting use case. Are you familiar with Goa, Lisa Skinner Skinner?

Mm-hmm.

So for the listeners, Goa is a Portuguese colony. It's a Christian Portuguese colony on the coast of India. So it's not like the typical India you would see with, you know, Mumbai or one of these places. Like, it is radically different. Fucking Christian Portuguese colony. So the dynamics and experiences are different. So if we paint this, I understand everything about India lens, that's great. But people in Goa will typically associate more with Portuguese or Eurocentric model. So it's, it's very complicated. And as I was working through with caregivers, you know, just starting out looking for my grandmother, I would ask the care team, what do you know about this thing? How about this dynamic in this circumstance? I was asking all these kind of questions, and, you know, I would sometimes probably distract them from my grandma's care, but she'd get a little chuckle out of it because I'm just poking around and seeing where the, the openings are. And that's kind of what I, I uncovered, was that these, these organizations, they try their best and not for lack of trying, but it's just they don't have the time, experience, or really opportunity to learn about all these cultures. And I can't fault them for it because they can't do it. So long story short, we built this tool called Bluebell Connect that one, bridges these Caribbean islands, and two, supports families or hired care supports in providing person-centered care that is clinically valid, personally specific, and culturally appropriate.

Yeah, I mean, another great example, and who— if, you know, if you, if you're really not that tuned into other cultural beliefs, I train these doctors from Tanzania, and when I first started working with them, they shared with me that the community believes dementia is caused by witchcraft. And I think you and I talked about that in one of our conversations. I mean, that's a very sensitive topic to have to approach with somebody, family members, and the person living with dementia. You better be prepared for that. So, you know, if you don't even know that that's a thing, then you would not be prepared. And then you need to know how to be prepared because the way you respond bond could be completely different to somebody who doesn't own that belief, right?

100%. It's, it's heavily stigmatized. And Africa is a— I mean, all these countries have very unique circumstances, and Africa I think is a really interesting one because, like you said, it's considered witchcraft, it's considered spiritual warfare. And so you need to be equipped, uh, not just physically to look after this person, but there's a spiritual component there that you do need to address. Even if we reduce the stigma and say that it's not spiritual warfare, and they recognize that it's not witchcraft, that in the case of Zambia we don't have to throw them in the river or shoot them, but they still subconsciously have this spiritual warfare component, that there's still a spirituality lens oftentimes that they navigate. So how do you support that spiritual lens for them? How do you provide that spiritual guidance and support for them? And so it's, it's, it's unique. And I think dementia is not isolated to just, you know, North America or America or Canada. Like, it is the second highest caused, uh, disease— let's say— no, it's not disease, but let's say disease— cause of death around the world, right behind cancer, right? So it is super prevalent. But it's super stigmatized as well. And I think that we need to, you know, start addressing that. First Nation communities are another really, really interesting example to study. We see First Nation communities are significantly more prevalent to dementia, right? Yes, that's true. And so across Canada, by 2050, we're seeing 187% increase between now and 2050. So between now and 2050, we're seeing 187% increase. In First Nation communities, it's expected to reach 273% increase. That's a lot. That's a lot of an increase, right? But an interesting statistic, Lisa Skinner Skinner, on that is that we're seeing more Indigenous men have dementia than Indigenous women, which is the only community I'm aware of globally where more men are developing dementia than women.

That's fascinating because globally women develop Alzheimer's disease more than men. Yeah.

100%. And we can— research has kind of worked through why it's an increase in First Nation communities. Like, we kind of have an idea with all the— whether it's inequity in health, whether it's intergenerational trauma, or whether it's increased population. Like, we know kind of an idea why it's increasing in First Nations communities at a rate that's higher than population. But I haven't seen any research that says why it's happening in men. So I know it's super interesting, Lisa Skinner, to kind of work through these things. I have some friends that are doing research in the space and they're doing great.

There are several theories. I don't think that they're evidence-based yet, but for women— and the theories make sense. Because historically, women out— have always outlived men. Not one-to-one, but, you know, the majority. So that makes sense why they would develop Alzheimer's disease and related dementia more than men.

But that wouldn't necessarily attribute to early onset or frontal temporal, one of these ones either, right?

No, we're talking about Alzheimer's.

Oh, you're just saying Alzheimer's?

Yeah. And then the other theory is that women, starting as an adolescent, go through for the rest of their lives periods of all these hormonal changes. And there is, you know, a correlation, a theoretical correlation now, that that's a maybe another reason. But that wouldn't explain why in the indigenous communities, the ratio of men developing Alzheimer's disease is so much larger than women.

No, and, and what's interesting is, so we had on our podcast Dr. Tommy Wood. Are you familiar with Dr. Tommy Wood?

No.

Okay, so Dr. Tommy Wood is a, uh, he's an MD PhD from, I think it was Oxford and Cambridge in the UK. And he, uh, he now works for Formula 1, and he supports cognitive development of Formula 1 drivers. And he wrote this book, The Stimulated Mind, and he talks about the fact that Alzheimer's itself is roughly 50% preventable. So we have the 50% of cases of Alzheimer's can be decreased or eliminated by, you know, proper cognitive stimulation, engaging your mind, eating right, right, um, Maybe it is spending more time outside because recirculation of air is a problem. Good dental hygiene. There's all these reasons that can decrease our prevalence and likelihood of Alzheimer's.

Managing comorbidities.

100%.

Huge.

Yeah. But when we talk about that population, it is a little bit harder to do. It is a little bit more complicated because there are so much dynamics occurring on reservation and with and off reservation for Indigenous folk that it's complicated. And I think that unfortunately our system just hasn't figured out how to navigate because like just even accessing healthcare for Indigenous individuals is complicated because there's so much stigma present. For a statistic for you, between 10 and 25% of practicing Alberta physicians have reported explicit explicit anti-Indigenous bias. Between 10 and 25% of practicing Alberta physicians have reported an explicit anti-Indigenous bias. And this is a self-declared research project by a Dr. Pamela Roach and team at University of Calgary. So, and overall Alberta physicians have a moderate implicit anti-Indigenous bias. So that's pretty wild, right?

Yes.

So we, we have these, these folks that need the care, need the support, but they're not actually—

You know why?

Accessing? Uh, oh, there's lots of reasons why, and I'm not going to go into all the things, but there's lots of reasons why. And, um, to the effect where we're seeing, you know, communities themselves have apprehension towards reaching out to, to get support. There's a fellow named Brian Sinclair. Have I told you about Brian yet, Lisa?

No.

Okay, so Brian Sinclair, uh, he was a man in Winnipeg, and he was in a wheelchair. He had double leg amputee and he kind of wheeled himself in and he was having issues at the hospital. And so they assumed that he was homeless or intoxicated. And what ended up happening was they left him sitting there for 34 hours, 34 hours sitting in that room. And in that, he died in that chair with a plugged catheter. But he was dead for somewhere between 2 and 7 hours before the staff actually noticed him. That's wild. An Indigenous man sitting in a hospital waiting room for 34 hours deceased. Crazy.

That is a really heartbreaking story you just shared with us. I just can't even imagine that they would completely ignore somebody for 36 hours and then he ends up passing away. That kind of shocks me, actually. So your point is very well taken. I had no idea that things were like that severe, that extreme up there, especially sports.

It doesn't exist just up here, Lisa. In the States as well and exists in other colonized communities as well. So not just in Canada, it's— I don't wanna, I don't wanna say it's just a Canada problem 'cause it really exists outside of Canada. It's a larger, larger problem of inequity to health, which is a lot of where my, my doctoral work comes in is how do I support these communities that should be driving support and creating organizations to support their own people. I mean, I created this company to support my grandmother and help my grandmother, but I've kind of found a unique space where I speak with a lot of Indigenous communities and health leaders in these communities because they go, we don't know what to do. We see the statistics. It's ugly. It's messy., but we don't necessarily want to go and rely on the system. Part of the reason we see lack of or increase of dementia prevalence is because one, they don't necessarily access the health supports, and two, maybe they do want to access health supports, but the way they access it isn't reflective of the needs of the individual. So there's a thing, Lisa, in Canada called non-insurable health benefits. So You're aware that in Canada we have basic healthcare provided for every person, right?

Yes.

So something like if I want to go to a physician and I can go wait in a doctor's office, go see a doctor, sounds good. But that doesn't, that doesn't cover medication, it doesn't cover physiotherapy, it doesn't cover wheelchairs. None of this kind of stuff is covered. It's just basic medical care. Like once a year I get my teeth looked at. Every other year, you're gonna get my eyes, these kind of things, like basic things. In Canada, First Nations folk that have their status get what are supported by what's called non-insurable health benefits. And what that does is it means that no matter what happens to an Indigenous person, they get additional health benefits covered. So in the case of someone with dementia, they get a certain amount of hours of counseling, mental health support per year covered with a psychologist, counselor, whatever. If they live too far away, then they get transported in. That's part of the coverage. They'll get an Uber or bus or whatever to bring you where you need to go for support. That's great, but it doesn't reflect the truly lived experience that an individual on reservation has. For example, oftentimes the kukum, the grandmother, or the mushum, the grandfather, will be looking after the grandchildren. And those individuals, when they're looking after them, in order to get the support, means they have to now leave their grandchildren. So who's gonna look after the grandchildren? No one. So they choose and elect not to get the supports that they need because they're staying looking after their grandchildren because there's not enough room in the car for all these people. So they would rather look after their grandkid to get the support themselves. So this is just one of the dynamics that is existing and at play that isn't truly supportive, which is we're seeing this is a— Indigenous health is a very dynamic and complicated issue because it's not like we can say, let's just increase the supports because there's lots of things going on. And it's funny because Entrepreneurial Research says that Indigenous individuals in theory should be creating entrepreneurship ventures in health more than non-Indigenous individual health because, you know, there's, you see the, you see the mountain, you see the problem, and I know how I can support it. But we're seeing is actually the complete opposite, that Indigenous individuals aren't creating these ventures to support the communities.

Give us some examples of some of the things that your company is doing to support Indigenous communities. There in Canada?

Yeah, so first we have Bluebell Connect, which we've talked about before, but then I'm also going to lots of communities and just talking about dementia and just trying to break the stigma of like, this thing is existing, this is what's going on, and make sure the health leaders understand what's going on. It's funny, so in 2019, the Government of Canada released its dementia strategy. So Canada has this Dementia Strategy 2019, and in it, One of the strategy frameworks said Canada is going to go to all nations and talk about dementia, understand their dynamic, and support. That was one of the frameworks for it. Ironically enough, zero of that has been done. Like any strategy, you know, you need to have an implementation plan to actually make it work. They didn't do that. And so unfortunately, these communities are now left holding the bag. Like, you said you're going to do this thing, we want to understand, but we don't know anything about it. So I kind of come inside and You know, I, I travel these communities and I talk to the people and I, I make sure that we're— they're aware of what's going on because oftentimes they, they aren't. They don't understand what dementia is. They understand the prevalence. They understand what's going on. They understand how do we need to navigate it. So I come in non-clinically and just say, this is what's going on, this is how we— this is what you need to know, this is how we start to navigate it, this is how I can come alongside and support. And it's been really interesting, Lisa, because I have I have some folks who will call me randomly with their health needs and I'm like, I'm not a doctor, like I'm not a medical doctor, but I know people so I can connect them with some of my friends that are in the healthcare sector. And I'm like, can you have this person? I just sit on the line because they want me there. And so they just kind of have these communications and they ask questions and stuff because there's so much trepidation. And I think that that's just unfortunately the stigma that is present and the problem that is present where these people want support, they want help, but there's so much apprehension and risk and fear to going to the system. It's just like someone like myself comes in, they're just, "Yeah, let's do it." And ultimately I think that's the benefit of community. That's the benefit of working together and collaboratively. And Indigenous communities do this. Amazingly. So amazing. Indigenous music, really, or at least in Cree, it's really based on, you know, relationship and kinship and we're in this together and let's support each other. And it's, it's wakaton is the word in Cree. And I think that if I can come alongside and provide that support and help them through it, I consider that a win. And I, for my research work, I just hope to build out that system that other people can join me in this space. So I don't have to be the one doing all these things. I want to build other Indigenous folks that can come alongside me and help us support our communities.

Yeah. What advice or words of wisdom would you like to share with the audience today in terms of everything that you've experienced, everything that you're seeing out there? That can hopefully turn things around? Because, you know, you shared with us the just unbelievable increase in the number of Indigenous folks who are developing Alzheimer's. But this is a global crisis. I mean, the World Health Organization, the Alzheimer's Association, They are preparing us that if a cure or a treatment is not found by 2050, same year you quoted, the number of people who will— are expected to develop Alzheimer's disease is going to triple from the number of people living with it today. So we're seeing this as a global, a looming global crisis, and I think me personally, I've been doing this for 30 years, but if we rewind back even farther than that, I've been exposed to Alzheimer's disease and dementia for 50 years when my grandmother first was diagnosed with it. Then I've had 7 other family members in addition to her, and I haven't seen a whole lot change. I think the last couple years I've seen more changes than I had in the almost 30 years prior to that. But I don't know, from my viewpoint, I think we have a long, long way to go. So what's your vision for how we can turn this crisis around?

I consider myself a realist, to my wife's chagrin, where she wants me to be, you know, half glass full all the time. I consider, let's just call it the way it is, and I wish that we could, you know, move past this and solve this thing. I would love to see a world where I don't have to be doing this and I'm out of business doing this. I would love that. That would be amazing because I don't— I— it breaks my heart every time I talk to a femme who's going through this. But realistically, I, I think that the systems aren't necessarily where they need to be to help us as appropriately as we need to. It's Our reliance is so fixated on let's lock them up and put them in an institution, dementia care facility, and unfortunately forget them. I hear that too many times where people say, just put me in a, if I get dementia, just put me in a community and don't have to worry about me anymore, which is so sad. And it just breaks my heart every time that I've heard it. I've probably heard it at least a dozen times in the last 2 months alone. And which just breaks my heart. Like, the idea someone says, if I have dementia, just put me in a community and forget about me. Like, that's— it breaks my heart. And I think that reflects the problem that we are seeing. So I think really, for me, what I hope we can do to address this— I don't think we're going to solve the problem. Like, Tommy— Dr. Tommy Wood said that 50% is preventable. Great. Always— that still leaves half of those cases still there. So in my mind, for those half, how can we create an environment and a system in place that reflects the dignity that is that person, that adjusts the care that that person needs, that doesn't take away that person's voice, it bases the care around what they need, what they want, what makes them them. So in my mind, that's the future state I wish we can get to. We can't eliminate it. So instead, well, we, we can only control what we control. So let's control the piece about ensuring that they are cared for the way that they want to be. That's what's important to me, that we retain dignity and personhood for these folks living with dementia.

I couldn't agree with you more. And just to kind of emphasize your point. When I first started as a behavioral specialist working with family members and people living with dementia, the methodology and the approach for— to people living with cognitive dysfunction was called Reality Orientation Therapy.

Mm-hmm.

And that was what was popular 30 years ago. It didn't work because it really focused on correcting, arguing, trying to steer the person living with dementia back into the healthy brain's, healthy person's reality. And it was a train wreck. So, um, shortly thereafter, I want to say maybe 25 years ago, this new methodology started to become known. And, you know, I was in the industry, so I was trained on it. And I'm like, gosh, this is a no-brainer. And it accomplishes all those things that you just mentioned are so important. I mean, it really— these are basic human needs. If they're on the, you know, Maslow's hierarchy of needs, the very bottom basic human needs are all the things that you just said, purpose, meaning, dignity. So, you know, it totally makes sense. And we have seen that it is effective. But here we are now, 30 years later, and most people have never even heard of it. They're still correcting, they're still arguing, they're still trying to steer their loved ones or the people they're caring for back into their reality. So I don't know, I scratch my head and think, why is it so difficult for people to catch on to something that actually is working and helping people live much higher quality of lives than they've ever been able to before living with these brain diseases? So I don't know if you want to respond to that, but that's kind of my two cents.

I mean, the thing is, we— it's, it's easier. At least that's the reason it exists, is because it's easier. It's easier to go and argue and put our self-imposed constraints and boundaries in place. It is easier than allowing them to, to go to a woodshop and use a saw, to go and, uh, do what they want. There's a guy, he lives in— I think it's Florida— and his name is, if my, if my memory serves correct, his name is Scott. And Scott is living with or was, I don't know if he's still alive, but Scott was living with Alzheimer's and he would do all, he would do Ironman races while living with Alzheimer's. So for those don't know, an Ironman is 2.4-mile swim, so a 3.9-kilometer swim, 112-mile bike or 180K bike, and then a marathon after. So 26.2 miles for American folk and 42.2 kilometers for Canadian folk. So he would do that while living with Alzheimer's. Again, that's crazy, right? Like the system would say, you're not allowed to leave this unit because you might get lost, right? You might end up at somewhere else. Like Bea Smith, like about a decade ago, there's a whole public media, we're like, where did she go? She went missing. And they found her at a coffee shop, right? Because they were trying to control where she was and that's where she ended up. Where she was comfortable. But we said, hey, let's let this guy do something that he's done his whole life, right? That's a long ways, 140.6 miles. You let this guy do what he needed to do. It's memory embodied in those muscles. And by giving him the ability to do what he was used to and giving him that freedom, imagine the, the lucidity or the the, the, the, the support that we can give this, this individual and other people. Maybe I'm not saying everyone's gonna have to do an Ironman. Well, Alzheimer's, but just giving them, maybe it's just using a simple knife to cook your dinner. Something that simple. If you've done it for decades cooking for your family, just something that simple that is truly and intrinsically them. Think about how that can change our kids, right? Just, just that little small shift.

Definitely, definitely. You know, one of the things that I have personally witnessed is you try to do too much for somebody because you think they're not capable, and you end up just perpetuating them becoming an invalid. So we have to allow people to do what they're capable of doing based on where they're at in their disease and don't assume that they're not capable of doing anything, because if we assume that, we perpetuate that, and they'll just shrivel up and, you know, give up. So we're just about out of time, but this has been such a deep, deep, deep conversation. I appreciate you coming and sharing, uh, your knowledge and everything you're doing. How can people find out more about you and the work you're doing, which is just phenomenal.

Um, yeah, so they can, uh, there's lots of ways. You can just Google Bluebell Village, uh, or go bluebellvillage.ca is our website. Uh, you can check out our YouTube channel, which is Bluebell Village as well. And we've got, uh, podcast episodes, we got, uh, short pop culture critiques, we got 60 for 60, where we break down dementia stigma in individuals and kind of talk about what that means in short 60-second bites. Uh, bluebellconnect.ca, you can go there for information on Bluebell Connect. There are lots of ways you can find us, um, or you can just search me on LinkedIn if you want to connect. I'm, I'm around and easy to get in touch with, I, I think, and I hope. But yeah, if people need support, just I'm there and we're there at Bluebell to support people where they're at.

Well, keep doing what you're doing. Thank you for being such an invaluable resource for people who are going through this. It's such a challenging situation. And like you said, way more complex than people have even realized. It's not just about short-term memory loss and confusion. Which a lot of people, you know, mistakenly believe. So I think they kind of get an idea of what it's truly like to live with dementia. And I think, you know, this episode has given people a lot— not only a lot to be aware of that maybe they weren't aware of before, but really a lot to think about. So thank you again for your time today, and for all your, you know, really insightful information. Maybe you can come back another time and we can carry on this really deep conversation. It's been a delight to have you. Thanks again, Andrew.

Thanks, Lisa Skinner Skinner Skinner. Appreciate it.

Okay, take care. Hope you have a wonderful rest of your week, and I always wish everybody can stay happy and healthy, and I'll see you again next week. Bye for now.