A Conversation With Andrew Karesa From blueBell Village

Hi everybody, welcome to another new episode

of The Truth, Lies, and 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

Carissa, 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 Blue Bell

Village, he worked as a practicing engineer in the

energy sector, and one last thing. This is a 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

invitation, Lisa.

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, what'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 for 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 the

public sector and health industry segment, and 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 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 back and forth, I

ended up refusing to do it, because 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 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, at a 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, one plus one is always two, 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 fortunate enough that

we didn't have to put my grandmother in an institution or

one of these memory care facilities. Instead, we could

carry her at home with our family, which is truly. Be a

blessing,

so Blue Bell 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 this 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 Hogovich, which the dementia

village in Netherlands, and the idea that in this isolated

community everyone can live together, we can live normally,

not like the conventional memory care facility that looks like a

hospital with 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 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 Blue Bell 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 of 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, was like I want to build

this thing to support my grandmother. I want to build

this place so that my grandmother or people, 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 is 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 tray from her, she

tried, but it did, 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

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 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 you, my best friend is

Sue, and if you don't let me out here, I'm gonna sue you, like

that was Don's mindset, right? Pretty crazy in a dementia

village, right? Like, he sells 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, there's a working wood shop on the side,

like a one with, you know, a whole push up, and they're

making these little Christmas trees for the community kids,

and so he meant up making this thing, and or they're making

this like Christmas tree, and and you walked on inch and he

looked and said, "What are you guys doing? and they go, "We're

making these Christmas trees, and he goes, "Can I have? 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 wood shop. When initially they just

came 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. But it's pretty wild for

someone living with dementia in the dementia community to have

this level of autonomy, and I think that speaks 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 prioritize 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. It, a person 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

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, and so we started, we went down

the road and we. We went down the road for probably about two

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'm going to, you know,

shift it into a real estate ploy where it's where we're focusing

in on the notaries, 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 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 going to do it without the

government support, like you, you're going to 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 dementia, a village like this, the village Langley

is like $11,000 a month, Canadian, so it's a steep price

increase, but the families pay because 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 government

alongside, and unfortunately, our government just wasn't

alongside provincially, which is front the healthcare, the

provincial health care. They were going through a breakup,

the band was breaking up, and Alberta Health Services was a

mask. People didn't know what was happening, but 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. So, me being me, I'm not going to just sit and wait

for anything to happen, so I, while was going on, I built this

tool in the back end of my desk called Bluebell Connect, and

really does two things: one, it communicates the care and

information trends 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 make sure that they're on the same page.

Oftentimes, I'm sure you have heard of Lisa, that my company

uses blank. This other company that's worked that way higher,

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

got a binder that stays in the room that has all information.

One security is terrible on a binder. I mean, I lose things

all the time, so not great, right? How? And that assumes

they're gonna look at it, that assumes that they can, you know,

actually put stuff in 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

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 handling 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 characters in the islands,

so that's the first piece of connect. So if you're no matter

what home care or community 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 goal to make

this happen effectively, don't think the different, the various

people from all the different channels have to actually input

the information into correct as of right. 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 launcher 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? Oh, 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'd be catastrophic to

the,

to my grandmother. So, let's make sure

we're all working cohesively and collaboratively to a fixed tool.

So, yeah, that's how we kind of, that was the first thing that

was in it. And the second piece that 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 final process 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? What, where did you live? What languages do you

have? 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 frontal temporal dementia,

personally specific. So, you know, 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, limited to 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 the

common thing we're gonna bring puppies in, and it'll be great,

not always great, Lisa. So it considers what's the what

personal things we need to know, that's just one example. And

then culturally

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, they brought, you know, pet

therapy in for all the residents during the day, she would have

had a conniption fit,

and we typically just ignore, 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 the two go-to activities that I hear in

dementia communities are let's do chair yoga, or if you live on

mobile, let's do tai chi. I hear tai chi all the time, right?

Oh yeah, me too.

And I'm like, my.. so my two grandmothers, my

one grandmother had Alzheimer's, her parent, her dad was a

provincial politician, he has a school named after him on

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 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, 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. Uh, 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, it's 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 I know, so many communities that you don't have

these eye contact, but a lot of the time that's what they're

taught to do when they come here and become healthcare aid or LPN

or PC, or one of these kind of designations. That's what

they're shot. That's where

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, it for an indigenous person and

shrink back and you, you erase that, that bond,

so I mean that's a really important piece of

information to be aware of, and you know, we got it, we've got

to factor in cultural differences, and people don't

even really think about that as being an important component

to it's so complicated, Lisa, because I

honestly can't expect any hired care person to know all these

details, let alone, let alone the personal, like what does

this person that you're hired to look after? You might look out

for 10 people on today. 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 live 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 living dementia, you understand one

person living dementia, same kind of idea. So, how do we give

carriers 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're the typical dominant India community, but then you

got Goa, and Goa is a super interesting use case. Are you

familiar with Goa, Lisa? 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, 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 very complicated. And as I was

working through with carriers, 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 caregiving 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. Deep believes dementia is caused by

witchcraft. 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 could be completely different to

somebody who doesn't own that belief, right?

100% it's heavily stigmatizing, and Africa is, I

mean, all these countries have you 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 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

disease, let's say no, it's not disease, but let's say disease

cause of death around the world, right, playing 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,

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, 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, we've, 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 interdiscipluation

trauma, all whether it's increased population, like we

know kind of idea why it's increasing in First Nation

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, 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 really

early onset or frontal temporal, one of these ones either, right?

No, we're talking about Alzheimer's.

Oh, you're saying Alzheimer's, yeah,

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 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. So you're aware

that in Canada we have basic health care 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, can 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, my teeth looked

at every other year, my eyes, these kind of things, like basic

things. In Canada, First Nations folk that have their status get

what are supportive of what is called noninsurable health

benefits, and what that does is it means that no matter what

happens to an injured person, they get additional health

benefits covered. So, in the case some with dementia, they

get a certain amount of hours of counselor 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 get a, they'll get a Uber

bus or whatever to bring you where you need to go for sport,

that's great, but it doesn't reflect the truly lived

experience that an individual on reservation has. For example,

oftentimes the kookum, the grandmother, or the mushroom,

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 their grandchildren?

No one. So, they choose and elect not to get the support

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 Grandkill to

get the sport 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 as a indigenous health is a very

dynamic and complicated issue, because it's not even say let's

just increase the sports because there's lots of things going on,

and, and it's funny, because entrepreneurial research says

that indigenous individuals, in theory, should be creating

entrepreneurship ventures and 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. What 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 this 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 that

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 to in

the bag, like you said, you're gonna 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 travel these communities, and I

talk to the people, and 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 don't

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 support, and it's

been really interesting, Lisa, because 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 in the problem that is present, where these people want

support, they want help, but there's so much apprehension and

risk and fear to go into the system, and it's just like

someone like myself comes in, they're just, yeah, let's, let's

do it, and ultimately think that's that's the benefit of

community, that's the benefit of working together and

collaboratively, and indigenous communities do this amazingly,

so amazing indigenous. To me, is it 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 walk a tone, 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 seven 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 last fall 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 families 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 we, our reliance is so fixated on let's

lock them up and put them in an institution, dementia care

facility, and unfortunately forget them. That's 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 them 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 two 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 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, that I don't think we're going

to solve the problem, like Tommy Dr. Tommy Wood said, that 50% is

present preventable, great, always, that still leaves half

of those cases still there, so I'm aligned, 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

peace 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, you know, 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

two people living with cognitive dysfunction was called reality

orientation therapy, 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 brains, healthy person's reality, and it was a

train wreck. So 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

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 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 go

to woodshop and use a saw to go and do what they want. There's a

guy, he lives in, I think, is Florida, and his name is.. if

my.. if my memory starts tracking was Scott, and Scott is

living with, or was.. I don't know, it'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, and 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 this unit because you

might get lost, right? You might end up at somewhere else, like

B. Smith, like about a decade ago, there's a whole public

media were like, where did she went missing, and she then found

her a coffee shop, right, because we, 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 lucidity, or 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 with 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 death, right, just just a 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 being coming 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.

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 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.

Yeah, so they can.. there's lots of ways you

can just Google Bluebell Village, or go Bluebell

village.ca is our website. You can check out our YouTube

channel, which is Bluebell Village, as well. And we've got

podcast episodes, we got short pop culture critiques, we got 60

for 64 breakdown dementia stigma in individuals, and kind of talk

about what that means in 60 short 62nd bites. Bluebell

connect.ca you can go there for information on Bluebell Connect.

There are lots of ways you can find us, or you can just search

me on LinkedIn, if you want to connect, I'm around and easy to

get in touch with, I think, and I hope, but yeah, if people need

support, just I'm there and we're there at Blue Bell 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. 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.