Now or Never: Long-Term Care Strategy with Kosta Yepifantsev

Myths and Misconceptions of Dementia with Kyrié Carpenter

February 07, 2023 Kosta Yepifantsev Season 1 Episode 22
Myths and Misconceptions of Dementia with Kyrié Carpenter
Now or Never: Long-Term Care Strategy with Kosta Yepifantsev
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Now or Never: Long-Term Care Strategy with Kosta Yepifantsev
Myths and Misconceptions of Dementia with Kyrié Carpenter
Feb 07, 2023 Season 1 Episode 22
Kosta Yepifantsev

Join Kosta and his guest: Kyrié Carpenter, Co-Founder of the Anti-Ageism Clearinghouse, Author of - Healing Dementia, an in-depth psychological look at the phenomenon of cognitive change and Experienced Career Coach with a demonstrated history of working in the mental health care industry. 

Today we’re talking about the Myths and Misconceptions of Dementia. 

Find out more about Kyrié Carpenter:
https://kyrieosity.com/

Find out more about Anti-Ageism Clearinghouse:
https://oldschool.info/

Find out more about Kosta Yepifantsev:
http://kostayepifantsev.com/

Show Notes Transcript

Join Kosta and his guest: Kyrié Carpenter, Co-Founder of the Anti-Ageism Clearinghouse, Author of - Healing Dementia, an in-depth psychological look at the phenomenon of cognitive change and Experienced Career Coach with a demonstrated history of working in the mental health care industry. 

Today we’re talking about the Myths and Misconceptions of Dementia. 

Find out more about Kyrié Carpenter:
https://kyrieosity.com/

Find out more about Anti-Ageism Clearinghouse:
https://oldschool.info/

Find out more about Kosta Yepifantsev:
http://kostayepifantsev.com/

Kyrié Carpenter:

There is more going on up there and the way we process information changes as we age. So normal age related memory changes are really more about how we're processing information and how our brains work well versus with dementia. Again, depending on what type of dementia is there's going to be a different reason that you're having issues with that memory.

Caroline Moore:

Welcome to Now or Never Long-Term Care Strategy with Kosta Yepifantsev a podcast for all those seeking answers and solutions in the long term care space. This podcast is designed to create resources, start conversations and bring awareness to the industry that will inevitably impact all Americans. Here's your host Kosta Yepifantsev.

Kosta Yepifantsev:

Hey, y'all, this is Kosta and today I'm here with my guest Kiri, a carpenter, co founder of the anti ageism clearing house, author of healing dementia and in depth psychological look at the phenomenon of cognitive change, and experienced career coach with a demonstrated history of working in the mental healthcare industry. Today we're talking about the myths and misconceptions of dementia. I know this might seem ironic for a podcast about dementia. But will you briefly explain what dementia is? And what causes it?

Kyrié Carpenter:

Absolutely, yeah. So first, I feel like it's really helpful to understand the words we're doing. So Adam, logically, dementia means out of mind. And now actually, in diagnosis, we're not even using dementia anymore. So in psychology, there's a big book called The DSM Diagnostic and Statistical Manual, that is where we have all of our different psychological diagnoses. And dementia is currently called neurocognitive disorder in that book, and I think that that name is more helpful because it actually breaks it down. So neuro, that just means something going on with our brain, cognitive is a fancy way of saying thinking, and disorder is the opposite of order. So effectively, things aren't functioning the way that they have previously, they're, something's going on a new way. So that's how I like to think of dementia. And you know, roughly it is a symptom set, which is really interesting to know. So some dementia is we know what quote unquote, causes them, they can be when we're talking about that we're thinking of there can be dementia related to a vascular event. So you have some sort of thing that happens with your blood to blood clot in the brain, parts of the brain, you know, lose blood, we know that we have dementia from that other dementias are a little less clear, we could talk about that for a long time. But all of that to say, when we're diagnosing dementia, we're looking at that cognition, how we think, and we're wanting to see it changing in at least two ways. So the DSM again, breaks down six ways that our brain works. And if we see major changes, and at least two of those, we're going to give a diagnosis of dementia. So this is really important to know that dementia isn't, like COVID, where it's a virus that we can see, and that we can work on fighting. That's not what we're talking about, we're actually talking about an experience a phenomenon, a symptom set. And so we're thinking about those different ways that our brain changes. One aspect of it is memory. You know, other ones are executive functioning, which is a way of just saying like how we work, we're looking at language, we're looking at social cues. And there's these different domains of cognition that we're looking at. And we need to again see change in two or more of them before even giving a diagnosis.

Kosta Yepifantsev:

But what causes these diagnoses? Like is it they say, it's plaque on the brain or something like that? But I mean, maybe there's a better explanation. Yeah. So

Kyrié Carpenter:

then it's helpful to realize that dementia is an umbrella term again, for just for like saying, the way that your thinking has changed in at least two of these ways. And underneath that there's lots of types of dementia, you know, the most famous of which is Alzheimer's. You know, there's also Lewy body, so we're talking about Alzheimer's. That's where you hear plaques and tangles, and those are coming in. And to be perfectly honest, emerging research is showing us that there's correlation. But the causation gets a little bit confusing with Alzheimer's. There's an amazing study called the nun study that's still in process, where an entire you know, group of nuns donated their brains to science. And they're able to do the first double blind study on giving people cognitive tests, while they're alive to measure these changes and give diagnosis of dementia, but then also do the brain biopsy looking for the plaques and tangles and interestingly, everyone who everyone who had a dementia diagnosis and I say this right, did have the plaques and tangles, but not everyone who had plaques and tangles exhibited symptoms of dementia in their lifetime. That just tells us the story is more complicated. Yeah, absolutely.

Kosta Yepifantsev:

Like you said vascular event and I'm thinking that you were for lay in layman's terms. You meant stroke, right?

Kyrié Carpenter:

Yeah. have a stroke or like mini strokes, as they'll be called anything that's disrupting blood flow to the brain. So there's over 10 different types of dementia, there's Lewy body dementia, which is another, you know, a Lewy body in the brain. There's there's over 10 types of dementia, which is really important to know that Alzheimer's and dementia are not synonyms. Yeah. And honestly, again, it's not a disease. You know, it's Yeah,

Kosta Yepifantsev:

right. I mean, I hear a lot of people make that assumption all the time. And I have to correct them that they're not the exact same thing. I will ask you later on in the show about the prescription. It's called at a helm. It's covered by Medicare. I'd love to hear your, your thoughts on that. Because, like you were talking about in terms of a cure, obviously, that's what everybody wants, whether it's dementia, cancer, AIDS, what have you. But dementia like it's interesting, the distinction that you make when you say, it's not a virus, you can't isolate it, say, there it is. We got to treat that. Right. Yeah. So

Kyrié Carpenter:

yeah, and there's amazing if people are interested in that idea, more like, you know, sort of don't take my word for it. There's two amazing thinkers, Dr. Peter Whitehouse, wrote about the Alzheimer's method, he has a sort of this myth that it is this disease that we can, can cure simply and we just don't know enough yet. And also, Margaret lock wrote the Alzheimer's conundrum, which really goes into very academic deep detail into Yeah, why dementia really is more of a phenomenon than a disease is a more accurate descriptor.

Kosta Yepifantsev:

How does dementia differ from normal aging and memory loss? And how do you respond to the myth that dementia is a normal part of aging.

Kyrié Carpenter:

So changes in memory, both short and long term are one of those symptoms of dementia was mentioning that you have to have at least to have. So that's where I guess the Venn diagram overlaps, if you will, that there is are changes in short and long term memory that can be a component of a dementia diagnosis, and definitely a part of the experience of living with dementia is very frequently changes in memory. That being said, from the day we're born, you know, our brain is developing, and then 25 to 28. We know, it's pretty much fully matured. And then we begin, you know, biological aging at that point. From that point onward, we know that we get less skillful at doing like really fast math and recall, this can be replicated in studies, we also become more skillful, which usually gets left out of the conversation at noticing what could be called the gist of the story under the story, noticing patterns, noticing things like that. So that's when we hear you know, when a grandmother is listening to her teenage granddaughter, talking about the boy, she went on a date with him, the grandma just knows it's not gonna work out. That's because she's heard 1000 stories exactly like that, and can find the pattern. And so this a lot of this normal age related memory problems, which is usually that recall that tip of the tongue phenomenon, which I don't like using senior moment, because, you know, we didn't call it a junior moment when we were younger. But that tip of the tongue phenomenon, those things, it's actually because there is more going on up there and the way we process information changes as we age. So normal age related memory changes are really more about how we're processing information, and how our brains work well, versus with dementia. Again, depending on what type of dementia it is, there's going to be a different reason that you're having issues with that memory.

Kosta Yepifantsev:

Essentially, that makes sense. Yeah, no, it does. It really does. So you may not be like as quick to like you were saying to recall, but you. I mean, honestly, if I could understand how the world works, I would much rather take that than being able to, you know, do long division in my head, right?

Kyrié Carpenter:

Most of us would, which is great, right? That's really good. But do you actually realize that? So one of my mentors, Bill Thomas says, the next time you had that tip of the tongue phenomenon, just like lay back and be like, Alright, I have this superpower. I'll just, I need a minute to come up with the name of that restaurant from three weeks ago. But let me tell you, I can see how the world works and move through it with more ease most of us will take

Kosta Yepifantsev:

absolutely 100%. So in your experience, what is the most common misconceptions surrounding dementia? And how does this misinformation impact the way society views and treats individuals with a diagnosis?

Kyrié Carpenter:

I love this question actually had the opportunity to talk to to do like to focus groups with a bunch of folks living with dementia in Nevada and ask them like, what's the thing that like a noisy most? So I feel like I can speak informed sharing the voices of those living with dementia about this one, which is in the hands down. The biggest misconception that they report is that people think that life especially living well, and without dementia diagnosis, but all of a sudden, you've gotten handed this diagnosis and you're no longer a person like your personhood is sort of ripped away from Now things are done to you your talked at. And also just that it's, there's, of course extreme challenges to living with cognitive change to supporting someone living with cognitive change, I never want to deny that there also are beautiful moments that can happen ways to live well, ways to live with less suffering, I think that's the biggest misconception is that it's, you know, you're done. The minute you get that diagnosis, your life is over.

Kosta Yepifantsev:

Yeah. Do you? Do you know, the percentage of people that are actually living with dementia in the US? I'm just curious, you know,

Kyrié Carpenter:

off the top of my head, I'm not gonna get it correct. It's lower than you would think.

Kosta Yepifantsev:

Okay. It's not like, it's not like 10% of the population, right?

Kyrié Carpenter:

No, it's actually yeah, it's our, you know, and not to diminish the experience of those living with it at all. But our chances of the amount of fear that we have as a culture about being diagnosed with dementia far outweighs the actual prevalence of the disease.

Kosta Yepifantsev:

And you're, you were talking about kind of how they're talked at. And, and I do it, and a lot of times, you know, obviously, I work in long term care. So there's care plan meetings and things like that. And I remember, it doesn't happen as often now, because well, everyone is working towards like, person centered culture. But in the beginning, I remember this was a lot more prevalent, we would be in a room, and I was kind of new, so I didn't want to overstep. But I remember, we were just having a conversation about the individual that we were going to be servicing and not even talking to them. Like literally, it would be like, you know, if you're, if you have like your, you know, three year old or something like that, you know, that can't necessarily understand the conversation. But so you may or may not engage them. But I'm just like, Wait, she's right there. Like, why don't we, like, let's bring her in, you know, and so I feel like, as you're talking about supporting individuals with this with this diagnosis, a lot of times it requires, and we're getting to a point now where technology has come to sort of help smooth out the transition. But a lot of times, it does require a 24 hour commitment, whether it's, I mean, it may not be consistent, it could be intermittent, but still like, you have to devote a lot of time to it. So a lot. So what I ended up finding through my through my work is people with dementia get placed in long term care facilities, and they don't need to be there. You know, so, anyway, that's my two cents. I

Kyrié Carpenter:

think it gets into this. Again, this concept of surplus safety of we get so worried about something bad happened that we yeah, we like almost, you know, overdo it, and a lot of folks living with dementia will say, and a lot of folks also in the disability rights world, which, you know, dementia is sort of this beautiful intersection of ableism, ageism, nothing about us without us. You know, so it's about us, like we need to be included. And even if, you know, language change is one of those things we talked about in a diagnosis of dementia. And then language change. There's both receptive language and expressive language. So receptive being, as you're speaking right now, do I understand you and expressive being now I have a thought I want to express Can I say it in a way that you'll understand with the experience of dementia, those change differently in every person and at different rates, so someone might not be able to verbalize their wishes, but might be able to perfectly understand that care plan conversation? And so I really challenge people to to get creative about communicating and about that inclusion, you know, do we need to express it? Can we express it using some sort of art or expressive arts therapy, you know, my background is in therapy. I remember working with a woman whose family, we're trying to decide whether to up some medications, those of us on the care team, we're seeing some negative side effects from it. And so we were kind of at this conundrum of, is it the risk worth the benefit, and during a watercolor class, she painted an entire sheet full of pills, and then like, dumped the water color water on it? I felt like that was pretty clear communication that she Oh, wow, medication, even though she couldn't say that. You know, so it's getting creative about that. Know what people want and figuring out how not saying like, Oh, you don't speak the way you once did. Now? You're not included in the conversation? Right? Right. Yeah, looking for body language, all that kind of stuff. How else can we include?

Kosta Yepifantsev:

I'm curious, what's the relationship between memory loss and dementia? And is memory loss the only symptom or are there others?

Kyrié Carpenter:

Yeah, so kind of, sort of, like I was saying earlier, so memory loss can exist without dementia. All of us like I said, our brains are changing, you know, from the time or 20 and onward as our brains age. They're changing up how they work. And no, it is not The only symptoms so it's going to depend on the different types of dementia. So for example, frontal temporal dementia, which is one that affects the prefrontal cortex of the brain generally has some disinhibition that comes with it, a lot of other dementias do as well. So you're going to see some of those sort of social changes, again, the language changes I just mentioned, also coordination with your body. So in some later stages, you might see folks needing a little bit of help eating, and that can either come from the message of like, that's a fork, I should use my hand to pick it up, isn't making it to the hand, or it can come from not being able to coordinate the hand sort of depends on how that changes. Basically, yeah, there's, again, there's six different domains of how our brains change. And so that's a memory is one tiny piece of that.

Kosta Yepifantsev:

So you we were talking about the double blind study. And obviously the disease's vary, or the phenomenon is very complex. Yes. I mean, like, how far are we in terms of understanding dementia? At all? We like it, the 1% we just like it square one, essentially. And you're that's

Kyrié Carpenter:

that's me? Yeah, exactly. You know, in my opinion, yes, I know when to, you know, in my private conversations to kind of say, like, if dementia was the rest of the medical industry, we'd be at the bloodletting phase, and talking about humors. And we're just throwing things at it that don't work and, frankly, can cause a lot of harm. Yeah, in a really whelming. And this is what breaks my heart about dementia is we want to take care of our loved one who's living with dementia, and we want a medicine to fix it, we want to know more, but not being able to just sit in the not knowing can really cause a lot of harm, you know, with overuse of antipsychotics. Yeah,

Kosta Yepifantsev:

absolutely. And I've seen that happen firsthand. And literally, it's like, you had somebody that did suffer from a cognitive impairment. But they were still they had their moments, but they were still like, relatively normal in terms of interacting, similar to how they interacted prior to their diagnosis. But then they get prescribed because a lot of times, and I don't know what type of dementia causes this, if it's if it's multiple types, but they had behaviors, you know, where they, and it could be where their inhibitions may have been lowered. They may have gotten frustrated, they cause physical injury to themselves and to others. So they got on anti, they were prescribed antipsychotic medication. And I saw them, you know, three years later, and I mean, completely different person. You know,

Kyrié Carpenter:

there's an amazing I want it, you know, I'm not a medical doctor. I want to write I want to like, but there is a medical doctor, Dr. Al power talks a lot about this, he wrote a book called The venture beyond drugs, does a really great job, really parsing out when someone is using a behavior as a form of communication, you know, and when and that we need to be really careful not to treat for behaviors. And just even, you know, the way and I psychotics work to is, they're basically being used as sedatives, they don't treat dementia, they don't make anything better. It feels good to get a prescription for a pill, because we want to be helpful, you know, but folks would be far better off with some other medications with less side effects.

Kosta Yepifantsev:

And I'm not going to go down a rabbit hole, but I do want to shine some light on this. In the IDD population, so individuals with intellectual and developmental disabilities there's an entire culture built around behaviors being a form of communication. Yes. And like, how you how you facilitate how you handle someone that's experiencing the behavioral episode. And I mean, trainings and yes, programs. And so the fact that we can't correlate that to individuals who are suffering from dementia has always been rather strange for me. So, but anyway,

Kyrié Carpenter:

I would say that that's the so in that community, the IDD community, you've got the ableism now you've got this like ageism, thrown on top of it, and we just just care less about, I mean, I'm just gonna be totally, blatantly honest, we care less about older people in our culture than we do about younger people, you know, in this context, and so there just isn't as much funding, you know, there's amazing people obviously, doing great work. I was really grateful the community I worked in, trained us that way too. And we see, you know, a behavioral, you know, psychological symptom. To see that as an expression of need, and to get really curious about translating that need. And without, I mean, I can't tell you how many times there would be Yeah, whether it was violence towards themselves or others, these these really scary, you know, things that I get people's impulse to help. But when we dug into and looked at the environment looked at the different schedule, what was going on, we were able to actually create shifts, that then the behavior ceased because we had the need.

Kosta Yepifantsev:

Right. Exactly. So before we move on, what about add a home? You know, it's a, it's a drug that's now covered by Medicare, it's supposed to help treat Alzheimer's? What do you think about that? Because I don't think so either. But for some reason Medicare thinks so. And

Kyrié Carpenter:

yeah, there's some great again, there's some awesome medical doctors in the field. Again, our power, Dr. Peter Whitehouse, we're writing really well about this from that perspective. And but yeah, short cliffnotes is don't do it. moneygrab Yeah, evil, Big Pharma. We will definitely see, please do not put your loved ones on it. Don't take and I'll

Kosta Yepifantsev:

tell you. It's like it's so expensive. Yeah, like the premiums are going up because of it. Because I think Medicare's paying like$57,000 a year for it. So it's just it's crazy.

Kyrié Carpenter:

Somebody somebody who's making money? Yeah, exactly. Yeah. No, it doesn't, you know, we just I would love I would love for us to know more about dementia to be able to understand it to be able to work towards treatment to be able to work towards cure, like you said, just like with cancer, just like with AIDS, and that just isn't where we are.

Kosta Yepifantsev:

Absolutely. Well, let's talk about maybe, let's talk about early prevention. So if there even is something like that, in the world of dementia, so generally speaking, how will early diagnosis and intervention impact the well being and lives of those living with dementia?

Kyrié Carpenter:

Yeah, so how I'm gonna unpack this is early intervention, super helpful in that everyone listening to this should be thinking about there are things we know that we can do that decrease our chances of experiencing dementia. Dr. Becca Levy out of Yale does amazing research into ageism, one of her studies was looking or she's done quite a few around those people experiencing dementia and found that having accurate knowledge about the aging process, so not biased, negative, ageist attitudes about aging, doesn't have to go positive, just accurate, decreases your chances of experiencing dementia, including Alzheimer's, even if you have the APO gene that says your pre that you're more likely to get it, which is amazing. So amazing work on becoming less ageist, yourself, like to work on your own internal bias there that's protected against dementia. We also know a lot of studies to that cardiovascular health. So again, I said, we know vascular events can cause dementia. So the more healthy that you can keep your heart, the better. So this is all the stuff we all know to do. And don't do. You know, exercising and eating well is also really helpful. There have been some studies that show mindfulness meditation can be helpful, you know, anything that's kind of helping, the more nimble your brain is, the better it's going to be able to work around if stuff is changing. So we'll say that on the early intervention side, I'm talking way before diagnosis all of us right now, from whatever age you're at, start thinking about those things. As far as diagnosis, because we know so little about dementia. I when I talk to folks about this, like should we push for a diagnosis with my loved one with myself, I always ask them for the sake of what diagnosis can be really helpful in going, Oh, I thought I was going crazy. Now I have a name for this symptom set that feels really good to know what it is. Now I can also find other people with a similar experience, draw support from them, that feels really good. If that seems like something it'd be helpful for you get that diagnosis. That being said, oftentimes a diagnosis comes with a whole lot of stigma. And since there isn't a cure, and we know so little about it, it can sometimes harm more than it helps. So just being really thoughtful about your diagnosis, getting diagnosed.

Kosta Yepifantsev:

It's it's a double edged sword because there are some programs and that are, you know, government funded programs and some government funded compensation that you can only access with that diagnosis. And so you but then again, you know, once you are diagnosed with dementia, like that's not something that you're going to be able to just say, Oh, I'm better now. You know, it'll be there forever. And especially like people that get diagnosed with early onset Alzheimer's, like in their 50s. I've encountered some individuals like that and have just like I mean, their lives. Have are going back to the to the, towards the beginning of the conversation how, you know, you're kind of it's like overkill in terms of the the the level of independence is almost gone. And they're so young, but you know, they have this diagnosis, they almost are put with a conservator, their their money, their rights, their ability to make decisions are taken away. And one of the biggest things that that we don't necessarily that we haven't talked about really is the fact that once people do have a die of dementia, or an Alzheimer's, diagnosis diagnoses, a lot of times they do have to have a conservatorship or a power of attorney. And that power of attorney can be financial or medical. So

Kyrié Carpenter:

and they frequently get, I would say imprisoned in memory care units, right. behind locked doors, you get put out explosions within a psychotic to exactly. So yeah, it's very complicated. That diagnosis for sure.

Kosta Yepifantsev:

Do you think that since more people are going to be aging in the United States than ever before in the history of our country that this disease may become a little bit more prevalent? I'm sorry, this phenomenon may become a little bit more prevalent. I'm gonna, I'm gonna write. And in that, it'll start to bring more awareness? Because I'll tell you, I've never really heard of ageism, to the extent that I'm hearing it now. And maybe it's because I'm talking to experts like you more than I typically haven't in the past. But this is it's becoming a lot more commonplace for us to have a conversation about being a just in the negative aspects of it. What do you think about that?

Kyrié Carpenter:

Absolutely, the demographic shifts are helping because there is a reality. I do think I always like to point out when we talk about longevity, because there's a lot of people that will tell you like we're living longer, because more of us are surviving childhood, not because we're getting better. So I feel like that's something I just want to make sure people know, I'm really good at extending the end of life, we're getting really good at Babies not dying. And that's why so people have been living to the ages, we're all living to for like for most of history, you know, and then obviously having access to hygiene. So I think that's really important to name to just as a general trend, we're doing really good with childhood illnesses. We're making headway on, you know, later life illnesses, but it's slower. That being said, too, as we're not dying of other things, and we're living longer, that gives us more of an opportunity to experience dementia. So there is sort of this aspect of it like because other things aren't getting us sooner, more people are living long enough to experience dementia. So absolutely, we're going to see more people living with it, not because there's more dementia out there. But because more people are surviving things that would have killed them before they experienced dementia.

Kosta Yepifantsev:

So are there any current therapies or treatments that are available? And are they effective?

Kyrié Carpenter:

Yeah. So in my that I'm aware of there's no medication that actually treats it, it's just symptom masking, which as we talked about, is problematic because you're actually masking communication. For the most part. That being said, you know, anti anxiety meds early on, you know, help with anxiety early on can be really helpful. Because when we're anxious, I mean, you and I probably both know from our own experience, when you're really anxious, how well does your memory work? How well are your social skills? Good. So making sure we treat underlying anxiety and depression can can help alleviate some symptoms severity of symptoms. Again, my background is as a therapist, so I will say psychotherapy can be really helpful in the early stages of dementia, you could still do traditional talk therapy, you know, inside base talk therapy can be really helpful to process to work through the grieving process of these changes, you know, what are you losing? What are you gaining? In the middle stages of dementia expressive arts practices can be really great again, to foster that communication and that expression, giving us place for it to come out, you know, so that it doesn't need to come out in these behaviors, you know, we were talking about earlier. And in the very even in the very late stages of work, there's a field of psychotherapy called process work. That does a lot of work with folks in comas and things to that can be really helpful for connecting with people I'm also an emerging thing that's happening this is pretty cutting edge that I'm really curious about is psychedelic assisted therapy for the person living with dementia, but for their care partners, to help them have an experience of being in a different reality. Because so much of the experience of dementia is loosening

Kosta Yepifantsev:

the holds on time and space. Interesting.

Kyrié Carpenter:

is working really excited about Yeah, so it is it's really it's personal. It's for empathy increase. which then can help decrease frustration which can increase quality of life for everyone. So I'm really, really curious as there's more legalization for those. So much of this is anecdotal now because it is being, you know, having to be done. Sure, obviously, not in labs. But now that we've got some legalization around psychedelics, I'm super curious about that emerging work, as well as the empathy builders. And then I'll also say just if you're living with someone dementia go to an improv class. There's some really great work around techniques from improv being used to help increase well being

Kosta Yepifantsev:

interesting, you know, when I think of, sometimes when I think of individuals who have a demand of diagnosis of dementia, you ever seen Harry Potter and the Order of the Phoenix, when mad eye moody is like, at the very bottom of the chest, and there is a Goblet of Fire? Anyway, the one was mad eye moody, yeah. And he's at the bottom of the chest, and he's looking up and they're like, there you are at the very end of the movie. And I think to myself, like if they're all the way down, you know, somebody has dementia, it's all the way down in this chest, and they're looking up, and no one can spy can see them and hear them understand them. And then you bring into a psychedelic, like, like psilocybin or, you know, something like that. MDMA, and they escape their reality. It's almost like taking them out of that chest and putting them like, I'm so excited that you brought that up, because I'm fascinated to see if, if that might have some, some significant because it really, like doesn't turn

Kyrié Carpenter:

sort of all around, right. So I'd be really curious about it just early stages to help people get comfortable with the bounds of reality check more fluid. Yeah, and then empathy building for care partners. And then Yeah, who knows the treatment, that'd be really fascinating, as well. There's definitely some emerging work happening there, which is fascinating.

Kosta Yepifantsev:

So cool. So before we wrap up, I want to talk about any resources or strategies for caregivers that you'd recommend in where those living with dementia and their loved ones can find community and support.

Kyrié Carpenter:

Absolutely, I have some great RX for you. So dementia Action Alliance is an amazing organization to check out. There's also a coalition called reimagining dementia, that, you know, all of these include both people living with dementia and their care partners and advocates, you know, the whole gamut. Dementia Friends is also a great program, look up local memory cafes, which is just where folks can go and meet up in restaurants with other people living with dementia and care partners really great. I will say there's, you know, the changing aging.org is a blog that has a bunch of bullets and links to stuff I've written for there, which is all sort of thinking about this more, not focusing on what's lost, but focusing on what's possible. Absolutely, I would say and then the Eden alternative is doing some amazing work in long term care reform. And they just switched from, they have a membership model where individuals can join and really tap into community. So all of these that I just listed, have, you know, regular online doing gathering some in person stuff, I'll give links to others that can be included in

Kosta Yepifantsev:

this. Amazing. So we always like to end the show with a call to action. What can we do to start building communities and a society more accepting and accessible to those with dementia?

Kyrié Carpenter:

Yeah, absolutely. You know, in the absence of knowledge and a cure, the biggest thing that we can change is our reaction to dementia, we can we can reduce that suffering that comes from the culture that is so you know, anti dementia So, and to do that, I would just say, educate yourself about the misconceptions of dementia. Educate yourself about the stigma. And the best way to do that is to hang out with somebody living with dementia, because you're gonna have all these ideas and you're gonna meet this person and be like, Whoa, it's not what I thought it was.

Caroline Moore:

Thank you for joining us on this episode of Now or Never Long-Term Care Strategy with Kosta Yepifantsev. If you enjoyed listening and you wanna hear more make sure you subscribe on Apple podcast Spotify or wherever you find your Podcasts, leave us a review or better yet share this episode with a friend. Now or Never Long-Term Care Strategy is a Kosta Yepifantsev production. Today’s episode was written and produced by Morgan Franklin. Want to find out more about Kosta? Visit us at kostayepifantsev.com

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