0:05

That's the key in

0:05

discussing this with people

0:08

because don't jump to the

0:08

conclusion somebody has

0:11

Alzheimer's because in reality,

0:11

unless you're a doctor, unless

0:15

you're a neurologist, unless

0:15

they've undergone the PET scans,

0:20

the cerebral spinal fluid taps,

0:20

the genetic testing, and all the

0:25

other things that go into making

0:25

a much more precise diagnosis.

0:32

I'd watch calling it Alzheimer's

0:32

until then.

0:36

Welcome to Now

0:36

or Never Long-Term Care Strategy

0:39

making. themselves. with Kosta

0:39

Yepifantsev a podcast for all

0:42

those seeking answers and

0:42

solutions in the long term care

0:45

space. This podcast is designed

0:45

to create resources, start

0:49

conversations and bring

0:49

awareness to the industry that

0:52

will inevitably impact all

0:52

Americans. Here's your host

0:56

Kosta Yepifantsev.

0:58

Hey, y'all,

0:58

it's Kosta. Today, I'm here with

1:00

my guest, Kevin Jameson,

1:00

Founder, President and Chief

1:04

Volunteer of Dementia Society of

1:04

America, a nonprofit working to

1:08

educate and promote awareness of

1:08

all types of dementia. Kevin,

1:13

you started the dementia Society

1:13

of America after experiencing

1:17

the difficulties and isolation

1:17

that comes with dementia

1:21

firsthand. How did your personal

1:21

journey with dementia shaped the

1:25

structure and vision of this

1:25

organization?

1:29

No, I appreciate

1:29

that constant. Thanks for having

1:31

me today. So you know, the

1:31

dementia society was kind of

1:34

born out of a need that, that I

1:34

saw after my wife had kind of

1:40

gone through the trajectory of

1:40

living with dementia. And you

1:45

know, the caregiving experience

1:45

and she ultimately was in a

1:49

nursing home in a in a dementia

1:49

carry community within the

1:54

nursing home. And then she

1:54

entered hospice for the last

1:58

part of her life. And so I

1:58

retired when she entered

2:01

hospice, even though I had been

2:01

caring for her a lot, I did have

2:05

professional care in the

2:05

beginning and then move your to

2:08

the nursing home. But you know,

2:08

the dementia society really was

2:13

born out of this, this need that

2:13

I saw that people didn't know

2:16

what dementia really was. It

2:16

didn't understand it.

2:20

Oftentimes, the question would

2:20

be, what's the difference

2:24

between Alzheimer's and

2:24

dementia? And we still get that

2:27

question today. But when we

2:27

started, we knew that people

2:32

were searching for help and for

2:32

looking for answers. Because

2:35

they might go to a doctor, they

2:35

may have a loved one with

2:38

dementia, and they really had

2:38

little to go on. You know, they

2:42

didn't, they were drinking water

2:42

from a firehose, and they needed

2:46

some help. So I felt that there

2:46

was an opportunity there to

2:49

educate people, because I've

2:49

been in sales and marketing. And

2:53

so you know, my expertise was in

2:53

the kind of education process,

2:58

getting people to understand

2:58

this or that, so why not apply

3:02

that to dementia?

3:03

When, in

3:03

2001, when as I was reading your

3:07

bio, and your wife had a

3:07

terrible car accident, she

3:11

suffered a traumatic brain

3:11

injury, which, you know,

3:15

obviously, is the sort of the

3:15

initial the initial beginnings

3:19

of her developing a dementia

3:19

diagnosis. How difficult were

3:25

those next eight years before

3:25

she went into assisted living

3:28

and how ill prepared were you

3:28

and maybe, maybe reflecting back

3:35

almost thinking to yourself, Why

3:35

did no one tell me anything? Why

3:39

did no one give me any guidance?

3:41

Well, a couple of

3:41

clarifications, she didn't

3:43

really move into assisted

3:43

living, she actually went from

3:46

her home into a dementia care

3:46

community within a nursing,

3:50

okay, which is a little bit

3:50

different than assisted living.

3:54

But I mean, the reality is, in

3:54

the beginning, probably for at

3:59

least two or three years after

3:59

her accident, it was kind of

4:03

business as usual. I mean, we

4:03

really didn't think about it.

4:07

And it's only in looking back,

4:07

that I was able to kind of

4:11

pinpoint, a dramatic change in

4:11

her personality. You know, it

4:16

wasn't memory loss. Initially,

4:16

it was a dramatic change in her

4:19

personality. And she became very

4:19

caustic. And just just, she was

4:27

typically a bubbly, friendly,

4:27

beautiful person. But but that

4:32

personality change caused us to

4:32

have some marital difficulties.

4:36

And in the process of going

4:36

through those marital

4:38

difficulties is when our

4:38

therapist we went to a marriage

4:43

therapist, and counselor and she

4:43

said, You know, I think there's

4:47

something going on with Ginny

4:47

doesn't seem like it's a problem

4:50

with the love between the two of

4:50

you. But there's there's

4:53

something and I can't put my

4:53

finger on it. And, and I really

4:56

didn't know what that meant, and

4:56

I don't think therapists knew

4:59

what that meant. She's just said

4:59

recognized some something was

5:02

off. And so it really didn't

5:02

manifest itself in a way that

5:09

was meaningful to me in terms of

5:09

her cognition, until we went out

5:13

to dinner one night, and she

5:13

asked me how I knew the hostess

5:19

because I walked in, I sent a

5:19

letter to the hostess. And she

5:21

goes, How do you know the hostess? I said, well, since last time, we were here, same

5:23

same person. She goes, I've

5:26

never been here before. And and

5:26

I'm like, What are you talking

5:30

about? We're just here last

5:30

month, you know, I can tell you

5:33

what we had, where we sat. She

5:33

denied it all. She said, You

5:36

must have been here with another

5:36

woman. And that, to me was the

5:41

sign. That was that there was

5:41

something going on beyond

5:44

personality change. And so that

5:44

became the trigger for me to

5:51

say, We got to get to the bottom

5:51

of this, you know, I was

5:54

planning to divorce her. I

5:54

wanted to leave the house at

5:56

least. And that all changed that

5:56

night. Because I was like, This

6:01

is not right. It's not really

6:01

her. It's something that's going

6:06

on in her brain. Right, and we

6:06

need to get to the bottom of it.

6:09

So I just started this kind of

6:09

long trajectory of pinging her

6:13

doctor, you know, trying to get

6:13

the doctor to take it seriously.

6:19

You know, and that was very

6:19

difficult, because she was in

6:22

her 60s. And you know, most

6:22

people don't have cognitive

6:27

challenges, or, you know, or if

6:27

they do, they're not caused by

6:31

an underlying disorder, they

6:31

might just be stressed out, they

6:34

might be depressed. I mean, there could be a lot of different things going on. They

6:36

might have a medication

6:39

imbalance issue, they might have

6:39

hormone imbalance, they might

6:43

have a vitamin deficiency. I

6:43

didn't know what it was. And so

6:48

that's kind of was the beginning

6:48

of the of the process.

6:51

Before we get

6:51

too far into the episode. There

6:54

are important distinctions to be

6:54

made between dementia and

6:58

Alzheimer's. Why do you think so

6:58

many think of these conditions?

7:02

synonymously?

7:04

Well, in some

7:04

ways, they are synonymous,

7:07

because the reality is that, but

7:07

they are different. So let's get

7:13

into it. So dementia is not a

7:13

disease. Okay, that's the number

7:20

one thing to know. And doctors

7:20

will call it a disease. The

7:24

National Institutes of Health

7:24

does a little bit better job

7:27

than that the World Health

7:27

Organization does a better job

7:30

than that Cleveland Clinic, Mayo

7:30

Clinic, you know, and a lot of

7:35

leading organizations in the

7:35

country and around the world get

7:38

it. But unfortunately, at a at a

7:38

physician level of primary care

7:43

physician, or even some

7:43

neurologists, they will still

7:47

refer to dementia as a disease.

7:47

And you see that a lot of times

7:52

in their webpages, you see it in

7:52

care communities, they, they,

7:57

they they they call it a disease

7:57

professionals, but it's not.

8:02

Right. It's a syndrome. And what

8:02

does that mean? And how is that

8:06

different? A syndrome is a

8:06

collection of symptoms. Okay,

8:10

typically without a cure, and

8:10

typically will be a fatal cause

8:17

of death and Alzheimer's

8:17

disease. And we can call that a

8:25

disease there is a there is a

8:25

pathological change and there

8:29

are pathological markers for it.

8:29

Causes dementia, I say can cause

8:38

it, and I use the word can

8:38

because not everybody with

8:42

Alzheimer's disease in their

8:42

brain will express dementia. And

8:48

but so vascular disease many

8:48

strokes will cause dementia.

8:54

Lewy Body disease causes

8:54

dementia. frontotemporal

8:58

degeneration causes dementia,

8:58

CTE, what football players and

9:02

soccer players can get can cause

9:02

dementia, TBI, traumatic brain

9:08

injuries, normal pressure

9:08

hydrocephalus, great show the

9:12

ACO wernicki Korsakoff. The list

9:12

goes on and on and on. And the

9:18

the important distinction is to

9:18

know that those are all

9:21

conditions and disorders and

9:21

diseases that express dementia

9:27

and dementia to define it is

9:27

cognitive challenges as a result

9:35

of those underlying disorders

9:35

that are so severe that you

9:40

cannot perform your activities

9:40

of daily living. That's really

9:46

the technical default definition

9:46

of dementia, and also that it's

9:50

progressive, that it gets worse

9:50

over time. So when you have

9:54

something that's an underlying

9:54

disorder, expressing it selloff

10:00

in these cognitive challenges

10:00

that are so severe that you

10:03

cannot do your activities of

10:03

daily living, coupled with the

10:07

fact that it gets worse over

10:07

time. That's the definition of

10:11

dementia. So people, people that

10:11

have Alzheimer's disease,

10:17

typically will express dementia.

10:17

But somebody with dementia does

10:23

not necessarily have Alzheimer's

10:23

disease. And so fascinating.

10:27

That's the key in discussing

10:27

this with people because don't

10:31

jump to the conclusion somebody

10:31

has Alzheimer's, because in

10:34

reality, unless you're a doctor,

10:34

unless you're a neurologist,

10:39

unless they've undergone the PET

10:39

scans, the cerebral spinal fluid

10:44

taps, the genetic testing, and

10:44

all the other things that go

10:49

into making a much more precise

10:49

diagnosis. Hmm, I'd watch

10:56

growling at Alzheimer's until then,

10:59

you know, usually when we look at dementia, and the syndrome, as

11:01

you're describing it, and we

11:06

think of ways to support

11:06

individuals that suffer from it,

11:13

or have to live with that type

11:13

of condition, we always look to,

11:18

you know, kind of the human

11:18

element, the human caregiver,

11:20

that's going to step in and

11:20

assist with those activities of

11:25

daily living, especially as it

11:25

progresses to the point to where

11:28

an individual may start

11:28

forgetting things significantly.

11:32

They may, you know, at times,

11:32

even forget how to talk, how to

11:35

walk, etc. But I want to talk a

11:35

little bit about a separate

11:40

component of care. And I want to

11:40

talk about technology. How does

11:44

technology aid in providing

11:44

personalized care options,

11:48

specifically in improving

11:48

community engagement, but also

11:53

communication?

11:55

Well, it depends

11:55

that there are tools out there

11:59

from a technology standpoint

11:59

that people have introduced, you

12:02

know, for folks living with

12:02

dementia, and we by the way, we

12:07

don't say suffering with. So you

12:07

made a great correction on your

12:11

part,

12:12

yes, because

12:12

I've made that mistake before.

12:16

Not everybody is

12:16

suffering who's living with

12:18

dementia, that's the one I mean,

12:18

there's anxiety, there are

12:22

things that go along with it

12:22

that are not necessarily good

12:26

things. But sometimes the person

12:26

living with dementia is really

12:31

not suffering, it may be the

12:31

care partner that suffering,

12:34

because they're not able to talk

12:34

to their loved one as they once

12:38

did, or do things that they once

12:38

did. So living with dementia as

12:43

the way we would put it, and

12:43

there are beautiful things that

12:46

can happen. And things that

12:46

wouldn't have happened if the

12:49

person hadn't, you know,

12:49

developed dementia, right? New

12:54

ways of relating to somebody,

12:54

you know, new, a deeper

12:59

understanding of one's love and

12:59

commitment to somebody.

13:02

Absolutely. But when it comes to

13:02

technology, I would say the

13:05

number one thing is the use of

13:05

music. So you're wearing

13:11

headphones, I'm not but but but

13:11

headphones remind me of the fact

13:15

that, you know, one of the

13:15

simplest things we can do for

13:18

folks that are living with

13:18

dementia is remember just to

13:22

play music. Because even you

13:22

know, a spoken word may not be

13:27

understood. But music resides in

13:27

different parts of the brain.

13:33

And so even though certain parts

13:33

of the brain may be affected by

13:37

the pathology of a dementia, but

13:37

the totality of the brain may

13:43

not be and that's where music

13:43

resides. Right? Because music is

13:47

a is a lot of things. Music is

13:47

sound, it's vibration, it's

13:51

memories, it's good times it's

13:51

bad times there's emotional

13:56

content related to music. So I

13:56

would always say that that's a

14:00

great way to engage in a

14:00

community with somebody, either

14:05

one on one or with multiple

14:05

people is live music, recorded

14:09

music, you know, virtual music,

14:09

you know, over the whatever, you

14:14

know, whatever, whatever form it

14:14

takes. If it's related to that

14:18

person's kind of younger age,

14:18

let's say when they were 1718

14:23

What were they listening to? So

14:23

for me when I get to be 95 You

14:30

know, I want to be listening to

14:30

the Bee Gees, I want to be

14:32

listening to Aerosmith. I want

14:32

to be listening to the Eagles,

14:36

you know, but somebody today

14:36

who's 85 or 90 might be

14:40

listening to Sinatra or Benny

14:40

Goodman or you know, Tony

14:44

Bennett or jazz or gospel.

14:46

So as these

14:46

as music engages the neural

14:50

pathways, is it the fact that

14:50

sometimes especially when

14:55

dementia, the syndrome

14:55

progresses to a certain point,

15:02

does music allow you maybe not

15:02

even verbally, but just in terms

15:07

of body language and attention

15:07

and interaction, allow you to

15:12

communicate with an individual

15:12

who has who's living with

15:16

dementia? Is that sort of the

15:16

theory behind it? Oh,

15:18

absolutely.

15:19

In fact, there,

15:19

you know, there is a, there is a

15:22

kind of part of the dementia

15:22

landscape called aphasia, where

15:27

somebody cannot retrieve words,

15:27

or come up with the word for a

15:32

particular thing. You know, you

15:32

or you call it banana, and, you

15:37

know, a wrench. I mean, there's

15:37

all sorts of interesting things

15:40

because the brain is so complex,

15:40

right? How are these connections

15:43

made? And why would somebody

15:43

look at a banana and call it a

15:45

wrench, but at the end of the

15:45

day, play a song and sing the

15:50

verses of that song, they will

15:50

sing it perfectly? Absolutely.

15:55

Some people who stutter, as an

15:55

example can sing well, right. So

16:02

this is no different when

16:02

there's, when there's a little

16:05

bit of a mismatch in our brains

16:05

with regards to word retrieval,

16:10

and so forth being lyrical in

16:10

your communication, singing a

16:15

question to somebody? How are

16:15

you today? You know, and that

16:21

may make an impact on the person

16:21

versus saying, How are you

16:25

today?

16:26

Absolutely.

16:26

Right. How can technology create

16:31

more independence, and even more

16:31

safety for those that are living

16:36

with dementia?

16:37

Well, I come from

16:37

a background of, you know,

16:40

having sold and marketed

16:40

electronic sensors for 3535

16:46

years. And a big part of that

16:46

was, you know, door sensors,

16:50

motion detectors, video cameras,

16:50

you know, and we're talking

16:55

about in the 80s, and 90s. And

16:55

in the early 2000s, you know,

16:59

this technology is just, you

16:59

know, really blossomed in terms

17:02

of what you could do and how

17:02

much it would cost? Well, today,

17:06

you know, you can get a camera,

17:06

you know, on the internet and

17:09

plug it in, and you're looking

17:09

at it on your phone, you know,

17:13

from your vacation in the

17:13

Bahamas. Absolutely. So you're

17:17

watching your cat, your dog, but

17:17

you know, at the end of the day,

17:21

that type of technology, Zoom

17:21

technology, you know, this type

17:24

of teleconferencing that we're

17:24

doing right now can be really

17:29

impactful. Because it'll, it

17:29

still allows a personal

17:33

interaction, without you having

17:33

to physically be there. Other

17:37

things that people can use from

17:37

a technology standpoint would be

17:40

the sensors. Knowing when a mom

17:40

and dad a husband, a wife, a

17:46

loved one gets up and, and moves

17:46

or doesn't move, right? If

17:51

they're if they're not going to

17:51

the refrigerator, if they're not

17:54

going to the bathroom, if

17:54

they're not turning on the water

17:57

for water, if they are turning

17:57

on the stove, if they are

18:01

opening the sun, the gun safe,

18:01

these are all things that

18:06

technology can help you with,

18:06

because the person who's living

18:10

with dementia may, you know, not

18:10

be doing the things that they

18:14

would normally do to keep

18:14

themselves satiated, hydrated

18:19

and safe. And so, you know, you

18:19

can you can add sensors to the

18:23

home to assist with that. People

18:23

have introduced apps, and you

18:29

know, any variety of tools for

18:29

the caregiver as well.

18:34

You know, what you're what you're describing is believe it's it's

18:36

the term is remote supports. And

18:43

I am curious, like you work with

18:43

people all the time that are

18:48

that are not necessarily I'm

18:48

sure you work with service

18:50

providers, but you probably talk

18:50

to a lot of sort of higher think

18:56

tanks, you know, people that are

18:56

looking at a problem and trying

18:59

to quantify it and say, okay,

18:59

you know, how do we put apply,

19:02

like a macro application to

19:02

solving this problem? If we stay

19:07

on the topic of technology, and

19:07

primarily on the topic of remote

19:11

supports, how do you think that

19:11

it's going to change in 10 or

19:16

maybe even 20 years as it

19:16

relates to the care process and

19:21

for long term care overall?

19:22

Well, you know, I

19:22

really can only speak to the

19:25

dementia side of that absolutely

19:25

great care because, you know, if

19:29

you if you if you have a hip

19:29

replacement, and you talk about

19:34

long term remote, you know,

19:34

telemedicine, so to speak, you

19:38

know, that's, that's, that's

19:38

different, right? You can you

19:41

can even film yourself doing

19:41

your exercises, you can film

19:44

yourself, you can have a

19:44

conversation with the doctor,

19:46

you know when to press the

19:46

buttons and you know, how to

19:49

make the connections to that

19:49

telemedicine visit. Potentially

19:53

right if you're if you're

19:53

cognitively intact. But, but

19:59

what ends it really least to

19:59

dementia, I'm gonna say the

20:02

human element is going to be

20:02

more important than the Tech

20:05

Tech element. And because

20:05

because we're human, we're not

20:11

machines. And, and having a

20:11

smile, just like you're doing

20:15

right now, having a smile,

20:15

having a warm hand to touch your

20:20

hand, a reassuring voice, that's

20:20

hard to do remotely, you know,

20:26

they're getting better with

20:26

remote robotics, but, but I

20:30

don't know how warm that handle

20:30

will be, unless they put a

20:32

heater in it. So

20:34

my will

20:34

though in 20 years, I mean, cuz

20:37

I'm gonna, I'm

20:37

gonna say as long as we're

20:39

human, yeah, we're gonna want

20:39

human interaction in person.

20:44

That's one of the downsides of

20:44

many, that we just went through

20:48

with COVID as an example, the

20:48

lack of the lack of human touch,

20:53

and the social isolation that

20:53

occurred from that. But going

20:58

forward, it taught us a lesson

20:58

that people do suffer when they

21:01

can't. It's just like, if you if

21:01

you don't hold a baby, when it

21:06

comes out of the womb, it

21:06

doesn't thrive.

21:09

Right? And it

21:09

makes sense.

21:11

Humans are I

21:11

mean, adults, humans are

21:14

different. So you know, that I'd

21:14

say that technology will have a

21:18

role in certain aspects, of

21:18

course. But it will never really

21:25

positively replace the benefit

21:25

of a human human interaction.

21:31

So here's the

21:31

overarching question. So a

21:34

little bit of statistics here,

21:34

okay. If humans are the answer,

21:39

but less and less humans want to

21:39

work in this industry,

21:43

healthcare in general, while the

21:43

aging population continues to

21:49

grow as a as a imbalance in

21:49

terms of relative to the other

21:55

populations. So if the demand

21:55

continues to climb, but the

22:00

supply will not have already

22:00

find enough humans to be able to

22:04

effectively provide the type of

22:04

care that will meet their needs,

22:09

without devoting a huge, if not

22:09

a outsized amount of resources

22:17

to the development of

22:17

supplementation of the human

22:20

element. Yeah, I

22:21

get it. I mean, I

22:21

think that, you know, Costa,

22:25

here's the thing. Again, if you

22:25

look at things that are non

22:29

dementia related in terms of

22:29

medical conditions, right, so

22:32

non cognitive related, I think

22:32

technology will be a will, is

22:38

today and will continue to grow.

22:38

And you'll be able to supplant,

22:44

you know, some of the rehab work

22:44

that's being done, because

22:50

you'll do a self rehab, and

22:50

you'll monitor it yourself. And

22:54

you'll have others to speak with

22:54

about monitoring it just like

22:57

you couldn't do an exercise

22:57

class or a yoga class online

22:59

today,

23:00

right at

23:00

using the peloton. Yeah, but,

23:03

but, but dementia

23:03

is different. And, and I will

23:08

only say that, you know, the

23:08

available humans to support that

23:15

community to support the medical

23:15

community will probably have to

23:20

shift upwards towards supporting

23:20

those living with dementia. You

23:24

know, if in fact, there's not

23:24

some and multiple silver

23:27

bullets, right, because people

23:27

talk about a cure for dementia?

23:32

Well, as I mentioned at the

23:32

outset, it's not a disease,

23:34

you're not curing dementia,

23:34

you're you would attempt to cure

23:38

the underlying causes of

23:38

dementia. Right? And it's going

23:42

to be a set in essence, like

23:42

cancer is today. There are

23:46

multiple therapies out there,

23:46

right? You can literally cut out

23:50

cancer, you can radiate cancer,

23:50

you can provide chemotherapy,

23:55

you can provide immunotherapy.

23:55

And you might have to do all of

23:59

those things with cancers. So

23:59

you're you're you may be finding

24:04

people in remission,

24:04

potentially, somebody cured of

24:07

their cancer. And that's the

24:07

type of thing that may be true.

24:10

30 years from now with dementia.

24:13

Are you

24:13

pretty optimistic about the

24:15

drugs that are being approved by

24:15

Medicare right now to treat

24:18

Alzheimer's? Is that is that is

24:18

that a positive? Are we moving

24:22

in the positive direction?

24:22

Because it seems that

24:24

Alzheimer's is, I mean, people

24:24

that are living with dementia,

24:28

the statistics that I've seen is

24:28

that it's about 7% of the

24:31

population, which is pretty

24:31

significant. I think when

24:35

you add up all

24:35

dementia is it's a much bigger

24:38

number than Alzheimer's alone.

24:38

Right. Right. And it could be,

24:42

you know, our estimates or

24:42

estimates are it's double the

24:45

number, right. Okay. So you've

24:45

got a bunch of folks, you know,

24:49

they're living with a lot of

24:49

different causes. And they've

24:53

been underrepresented. You know,

24:53

they're not underrepresented,

24:57

right, and they're not

24:57

underrepresented at the

24:59

dimension. So sidey because

24:59

we're looking out over all

25:03

causes, and the resulting

25:03

cognitive impairment which we

25:07

would call dementia, the severe

25:07

cognitive impairment. But I will

25:12

say this, you know,

25:12

pharmaceuticals in general, have

25:17

to make progress, somehow. Sure.

25:17

But we're not a pill popping

25:22

organization, and we don't, you

25:22

know, it's not something that,

25:26

oh, the only answer is a drug.

25:26

In the same way that the only

25:30

answer for certain cases of

25:30

diabetes is a drug, you can also

25:35

change your eating habits,

25:35

right, you can, you can improve

25:38

your your, your, your blood

25:38

sugar, just by eating

25:43

differently as well. I mean, you

25:43

might have to couple it up with

25:46

with some pharmaceuticals as

25:46

well. So I think that there,

25:50

it's a mixed bag. And I would

25:50

say that the people that are

25:53

able to and qualify for some of

25:53

the new infusion technology

26:00

that's being introduced and

26:00

pharmaceuticals that are being

26:03

introduced, if they can afford

26:03

it, if they're appropriate for

26:07

it, and they've been tested so

26:07

that they're an appropriate

26:10

candidate. And they want to do

26:10

it for the benefit of others,

26:15

that there'll be something to be

26:15

learned out of it. It's a good

26:18

thing, but it's not for the

26:18

masses

26:21

right now.

26:21

And I I agree with you, 100%. As

26:25

you're talking, something keeps

26:25

popping into my mind. And I

26:28

know, we started this

26:28

conversation about the confusion

26:30

between Alzheimer's and

26:30

dementia. And as you look at the

26:33

Alzheimer's Association's and

26:33

just Alzheimer awareness in

26:37

general fund runs, etc. It seems

26:37

like Alzheimer's is a, it's like

26:44

leading the charge when it comes

26:44

to support for cognitive

26:48

decline, and trying to reverse

26:48

some of the effects or at least

26:53

treat some of the effects of

26:53

that decline. This is gonna

26:58

sound like a really silly

26:58

question. But I just wanted to

27:01

ask you, since you're the

27:01

expert, why not change the name

27:06

of dementia to something else?

27:06

Because it just it's, it doesn't

27:10

sell well, too, in terms of

27:10

getting people engaged with, oh,

27:15

my gosh, we it doesn't make

27:15

anybody feel. And I know that

27:21

I'm making it sound like people

27:21

are fickle, but sometimes they

27:25

are. It doesn't, it doesn't

27:25

provide you with the emotional

27:31

sort of pull because of the of

27:31

the term. You know, it's like a

27:34

variation of demented and

27:36

yeah, I would

27:36

disagree with you totally. I

27:39

would disagree with you totally.

27:40

Let me know, let me know. I

27:42

mean, maybe not

27:42

totally. But here's the thing,

27:46

you know, is, is cancer a good

27:46

word? No, no. So there are lots

27:52

of words. And you know, we as

27:52

humans need a way to express

27:56

something, right? We got to put

27:56

a label on things, whether we

27:59

like it or not, you know, if you

27:59

can't put a name on it, it's

28:03

hard to describe it. Or if you

28:03

can describe it, you know, it's

28:07

hard to transfer that knowledge

28:07

to somebody else. You know, if

28:11

we didn't call a car, a car,

28:11

what would you call it? An

28:14

automobile? A horse with an

28:14

engine, you know, what would you

28:18

call it? So at the end of the

28:18

day, right, things do change,

28:23

right? When we talk about

28:23

horsepower, a great example of

28:26

horsepower. So that was a real

28:26

thing. Right? How many horses

28:29

did it take to pull a tractor to

28:29

pull a cart? So horsepower

28:35

became, you know, related to

28:35

engines and engines became

28:38

related to mobile, mobile

28:38

devices like automobiles, but I

28:43

would say no, I mean,

28:43

Alzheimer's as an example, but

28:47

Lewy Body, frontotemporal

28:47

Critchfield, yaka? You know, all

28:53

of these are distinct

28:53

pathologies. Technically, today,

28:59

the DSM five, which is a manual

28:59

for a lot of psychiatric

29:05

conditions, and human

29:05

conditions, you know, medical

29:08

conditions, cause it major

29:08

neurocognitive disorder.

29:15

Okay.

29:17

And that's fine.

29:17

But that's a mouthful, right?

29:21

And actually, people almost

29:21

would rather hear dementia than

29:25

Alzheimer's. Interesting. And,

29:25

and so, we, and this is just

29:32

coming from the 1000s of calls

29:32

that come in to us. You know,

29:36

somebody will say, you know, my

29:36

mother didn't have Alzheimer's,

29:39

she had dementia. Well, you

29:39

know, I don't know what that

29:42

means, except to say she didn't.

29:42

She was tested and maybe she had

29:48

vascular disease that causes the

29:48

dementia or frontotemporal or

29:52

Lewy body. So at the end of the

29:52

day, you know, we impart a

29:56

negative or a positive on any

29:56

anything we say If you look at a

30:01

hot dog from Chicago, you ever

30:01

seen a Chicago dog? It's got a

30:05

sickle on it. It's got, you

30:05

know, celery, see, somebody can

30:10

look at it and go, yuck. I look

30:10

at that and go.

30:15

That's great. Yeah.

30:17

So it's our

30:17

perspective, right? Yeah. There,

30:21

we can change our perspectives.

30:21

Right? We're able to do that

30:26

we're human.

30:26

And literally, that's what you're trying to do every single day.

30:28

Yeah. And I, I applaud you for

30:32

it. Because educating people on

30:32

something that hat we honestly

30:38

haven't educated them up to up

30:38

until maybe a few years ago, is

30:43

quite the task. Before we wrap

30:43

up, I want to talk about Jenny

30:48

Gibbs, and named in honor of

30:48

your incredible wife, Jenny, how

30:53

is this grant program assisting

30:53

caregivers and those living with

30:57

dementia?

30:57

Right, so we

30:57

established any goes well,

31:00

mainly, one, one thing to know

31:00

is that Jenny and I met on a

31:03

dance floor, okay. We've always

31:03

been into music and movement.

31:07

And she's always she was always

31:07

very athletic, I was a little

31:11

bit less so. But the one thing

31:11

we know for sure Costa is that

31:17

there are non medical therapies,

31:17

if you want to call them

31:21

modalities as another word, that

31:21

positively impact people living

31:26

with dementia and their

31:26

caregiver. So we talked about

31:28

music, but art, making art

31:28

discussing art, viewing art, you

31:36

know, art in general, just

31:36

creative expression, making

31:40

music, singing, listening,

31:40

discussing movement. So things

31:46

that get us to move our bodies,

31:46

right, whether it's dance, or

31:49

yoga, or tai chi, or just simple

31:49

stretching, holding hands,

31:55

touch, so any sensory

31:55

stimulation. So all of these

32:00

things are in the Ginny Gibbs

32:00

grants, and any nonprofit care

32:05

community, they have to be a 501

32:05

C three nonprofit care community

32:10

can apply for a Jenny Gibbs

32:10

grant. And then we will help

32:14

them by supporting their

32:14

program, whether it be art,

32:19

music, movement, sensory

32:19

stimulation, you know, and so

32:23

we're we're doing that and it's,

32:23

it's their phenomenal programs

32:26

to see come to life.

32:28

And you guys

32:28

are all across the United States

32:31

and internationally. That's

32:31

amazing. How much money have you

32:35

guys donated to this endeavor?

32:38

Well, I can't say

32:38

Ginny gives specific because I

32:41

mean, it's a part of what we do.

32:41

So, but we have raised millions

32:47

of dollars, and we've invested

32:47

millions of dollars. It's

32:49

amazing. So it not just in Jenny

32:49

gives but in education

32:55

awareness, research, we fund

32:55

research into different types of

33:00

dementia. So it's uh, you know,

33:00

we do a lot of different things

33:03

under the one umbrella.

33:05

So we always

33:05

like to end the show with a call

33:08

to action. If you could go back

33:08

to 2001. And give yourself one

33:13

piece of advice on how to

33:13

navigate dementia and your

33:16

journey as a caregiver. What

33:16

would it be?

33:19

Well, I wouldn't

33:19

go back as far as 2001. Maybe

33:21

because I was not aware, I'd go

33:21

back to 2000 to 2003 2004. And

33:30

say, once something became

33:30

evident that there was a

33:34

cognitive challenge for me as a

33:34

caregiver. Now, granted, when

33:39

she had her accident, there

33:39

could have been a lot of things

33:41

we did differently in 2001. But

33:41

we didn't know what we didn't

33:45

know. But I think the issue is,

33:45

is that when you do get the

33:49

inkling of something, then the

33:49

call to action is take action,

33:55

do something, get a workup, talk

33:55

to a professional push through

34:00

it don't take no for an answer.

34:00

If and write everything down

34:04

with a time and date stamp when

34:04

something happens that's unusual

34:08

for that person or yourself

34:08

because that'll create a record

34:13

of the of the challenges that

34:13

you're seeing either in yourself

34:17

or somebody else. And you can

34:17

present that to medical

34:20

professionals and it will help

34:20

them kind of drive a diagnosis.

34:23

Thank you for

34:23

joining us on this episode of

34:26

Now or Never Long-Term Care

34:26

Strategy with Kosta

34:29

Yepifantsev.If you enjoyed

34:29

listening and you wanna hear

34:32

more make sure you subscribe on

34:32

Apple podcast Spotify or

34:36

wherever you find your

34:36

Podcasts,leave us a review or

34:39

better yet share this episode

34:39

with a friend. Now or Never

34:43

Long-Term Care Strategy is a

34:43

Kosta Yepifantsev

34:48

production.Today’s episode was

34:48

written and produced by Morgan

34:50

Franklin. Want to find out more

34:50

about Kosta? Visit us at

34:56

kostayepifantsev.com