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Now or Never: Long-Term Care Strategy is a podcast for all those seeking answers and solutions in the long-term care space. Too often we don’t fully understand the necessity of care until it’s too late. This podcast is designed to create solutions, start conversations and bring awareness to the industry that will inevitably impact all Americans.
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
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Long-Term Care Strategy is a
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Today’s episode was written and
produced by Morgan Franklin.
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