Innovation, Integration, and Transforming Tomorrow’s Dementia Care with Kevin Jameson

Join Kosta and his guest: Kevin Jameson, Founder, President, and Chief Volunteer of Dementia Society of America, a non-profit working to educate and promote awareness of all types of dementia.

In this episode: Dementia looks different for everyone, how does technology aid in providing personalized care options, specifically in improving community engagement and communication? There are important distinctions to be made between Dementia and Alzheimer's, why do you think so many think of these conditions synonymously?  Why do you think so many people are afraid to bring technology into the care process? We use technology and automation for almost every other part of our life, why is this different?  

Find out more about Kevin Jameson and Dementia Society of America:
https://www.dementiasociety.org/

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

Transcript

Kevin Jameson: 0:05

That's the key in discussing this with people because don't jump to the conclusion somebody has Alzheimer's because in reality, unless you're a doctor, unless you're a neurologist, unless they've undergone the PET scans, the cerebral spinal fluid taps, the genetic testing, and all the other things that go into making a much more precise diagnosis. I'd watch calling it Alzheimer's until then.

Caroline Moore: 0:36

Welcome to Now or Never Long-Term Care Strategy making. themselves. 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: 0:58

Hey, y'all, it's Kosta. Today, I'm here with my guest, Kevin Jameson, Founder, President and Chief Volunteer of Dementia Society of America, a nonprofit working to educate and promote awareness of all types of dementia. Kevin, you started the dementia Society of America after experiencing the difficulties and isolation that comes with dementia firsthand. How did your personal journey with dementia shaped the structure and vision of this organization?

Kevin Jameson: 1:29

No, I appreciate that constant. Thanks for having me today. So you know, the dementia society was kind of born out of a need that, that I saw after my wife had kind of gone through the trajectory of living with dementia. And you know, the caregiving experience and she ultimately was in a nursing home in a in a dementia carry community within the nursing home. And then she entered hospice for the last part of her life. And so I retired when she entered hospice, even though I had been caring for her a lot, I did have professional care in the beginning and then move your to the nursing home. But you know, the dementia society really was born out of this, this need that I saw that people didn't know what dementia really was. It didn't understand it. Oftentimes, the question would be, what's the difference between Alzheimer's and dementia? And we still get that question today. But when we started, we knew that people were searching for help and for looking for answers. Because they might go to a doctor, they may have a loved one with dementia, and they really had little to go on. You know, they didn't, they were drinking water from a firehose, and they needed some help. So I felt that there was an opportunity there to educate people, because I've been in sales and marketing. And so you know, my expertise was in the kind of education process, getting people to understand this or that, so why not apply that to dementia?

Kosta Yepifantsev: 3:03

When, in 2001, when as I was reading your bio, and your wife had a terrible car accident, she suffered a traumatic brain injury, which, you know, obviously, is the sort of the initial the initial beginnings of her developing a dementia diagnosis. How difficult were those next eight years before she went into assisted living and how ill prepared were you and maybe, maybe reflecting back almost thinking to yourself, Why did no one tell me anything? Why did no one give me any guidance?

Kevin Jameson: 3:41

Well, a couple of clarifications, she didn't really move into assisted living, she actually went from her home into a dementia care community within a nursing, okay, which is a little bit different than assisted living. But I mean, the reality is, in the beginning, probably for at least two or three years after her accident, it was kind of business as usual. I mean, we really didn't think about it. And it's only in looking back, that I was able to kind of pinpoint, a dramatic change in her personality. You know, it wasn't memory loss. Initially, it was a dramatic change in her personality. And she became very caustic. And just just, she was typically a bubbly, friendly, beautiful person. But but that personality change caused us to have some marital difficulties. And in the process of going through those marital difficulties is when our therapist we went to a marriage therapist, and counselor and she said, You know, I think there's something going on with Ginny doesn't seem like it's a problem with the love between the two of you. But there's there's something and I can't put my finger on it. And, and I really didn't know what that meant, and I don't think therapists knew what that meant. She's just said recognized some something was off. And so it really didn't manifest itself in a way that was meaningful to me in terms of her cognition, until we went out to dinner one night, and she asked me how I knew the hostess because I walked in, I sent a letter to the hostess. And she goes, How do you know the hostess? I said, well, since last time, we were here, same same person. She goes, I've never been here before. And and I'm like, What are you talking about? We're just here last month, you know, I can tell you what we had, where we sat. She denied it all. She said, You must have been here with another woman. And that, to me was the sign. That was that there was something going on beyond personality change. And so that became the trigger for me to say, We got to get to the bottom of this, you know, I was planning to divorce her. I wanted to leave the house at least. And that all changed that night. Because I was like, This is not right. It's not really her. It's something that's going on in her brain. Right, and we need to get to the bottom of it. So I just started this kind of long trajectory of pinging her doctor, you know, trying to get the doctor to take it seriously. You know, and that was very difficult, because she was in her 60s. And you know, most people don't have cognitive challenges, or, you know, or if they do, they're not caused by an underlying disorder, they might just be stressed out, they might be depressed. I mean, there could be a lot of different things going on. They might have a medication imbalance issue, they might have hormone imbalance, they might have a vitamin deficiency. I didn't know what it was. And so that's kind of was the beginning of the of the process.

Kosta Yepifantsev: 6:51

Before we get too far into the episode. There are important distinctions to be made between dementia and Alzheimer's. Why do you think so many think of these conditions? synonymously?

Kevin Jameson: 7:04

Well, in some ways, they are synonymous, because the reality is that, but they are different. So let's get into it. So dementia is not a disease. Okay, that's the number one thing to know. And doctors will call it a disease. The National Institutes of Health does a little bit better job than that the World Health Organization does a better job than that Cleveland Clinic, Mayo Clinic, you know, and a lot of leading organizations in the country and around the world get it. But unfortunately, at a at a physician level of primary care physician, or even some neurologists, they will still refer to dementia as a disease. And you see that a lot of times in their webpages, you see it in care communities, they, they, they they they call it a disease professionals, but it's not. Right. It's a syndrome. And what does that mean? And how is that different? A syndrome is a collection of symptoms. Okay, typically without a cure, and typically will be a fatal cause of death and Alzheimer's disease. And we can call that a disease there is a there is a pathological change and there are pathological markers for it. Causes dementia, I say can cause it, and I use the word can because not everybody with Alzheimer's disease in their brain will express dementia. And but so vascular disease many strokes will cause dementia. Lewy Body disease causes dementia. frontotemporal degeneration causes dementia, CTE, what football players and soccer players can get can cause dementia, TBI, traumatic brain injuries, normal pressure hydrocephalus, great show the ACO wernicki Korsakoff. The list goes on and on and on. And the the important distinction is to know that those are all conditions and disorders and diseases that express dementia and dementia to define it is cognitive challenges as a result of those underlying disorders that are so severe that you cannot perform your activities of daily living. That's really the technical default definition of dementia, and also that it's progressive, that it gets worse over time. So when you have something that's an underlying disorder, expressing it selloff in these cognitive challenges that are so severe that you cannot do your activities of daily living, coupled with the fact that it gets worse over time. That's the definition of dementia. So people, people that have Alzheimer's disease, typically will express dementia. But somebody with dementia does not necessarily have Alzheimer's disease. And so fascinating. That's the key in discussing this with people because don't jump to the conclusion somebody has Alzheimer's, because in reality, unless you're a doctor, unless you're a neurologist, unless they've undergone the PET scans, the cerebral spinal fluid taps, the genetic testing, and all the other things that go into making a much more precise diagnosis. Hmm, I'd watch growling at Alzheimer's until then,

Kosta Yepifantsev: 10:59

you know, usually when we look at dementia, and the syndrome, as you're describing it, and we think of ways to support individuals that suffer from it, or have to live with that type of condition, we always look to, you know, kind of the human element, the human caregiver, that's going to step in and assist with those activities of daily living, especially as it progresses to the point to where an individual may start forgetting things significantly. They may, you know, at times, even forget how to talk, how to walk, etc. But I want to talk a little bit about a separate component of care. And I want to talk about technology. How does technology aid in providing personalized care options, specifically in improving community engagement, but also communication?

Kevin Jameson: 11:55

Well, it depends that there are tools out there from a technology standpoint that people have introduced, you know, for folks living with dementia, and we by the way, we don't say suffering with. So you made a great correction on your part,

Kosta Yepifantsev: 12:12

yes, because I've made that mistake before.

Kevin Jameson: 12:16

Not everybody is suffering who's living with dementia, that's the one I mean, there's anxiety, there are things that go along with it that are not necessarily good things. But sometimes the person living with dementia is really not suffering, it may be the care partner that suffering, because they're not able to talk to their loved one as they once did, or do things that they once did. So living with dementia as the way we would put it, and there are beautiful things that can happen. And things that wouldn't have happened if the person hadn't, you know, developed dementia, right? New ways of relating to somebody, you know, new, a deeper understanding of one's love and commitment to somebody. Absolutely. But when it comes to technology, I would say the number one thing is the use of music. So you're wearing headphones, I'm not but but but headphones remind me of the fact that, you know, one of the simplest things we can do for folks that are living with dementia is remember just to play music. Because even you know, a spoken word may not be understood. But music resides in different parts of the brain. And so even though certain parts of the brain may be affected by the pathology of a dementia, but the totality of the brain may not be and that's where music resides. Right? Because music is a is a lot of things. Music is sound, it's vibration, it's memories, it's good times it's bad times there's emotional content related to music. So I would always say that that's a great way to engage in a community with somebody, either one on one or with multiple people is live music, recorded music, you know, virtual music, you know, over the whatever, you know, whatever, whatever form it takes. If it's related to that person's kind of younger age, let's say when they were 1718 What were they listening to? So for me when I get to be 95 You know, I want to be listening to the Bee Gees, I want to be listening to Aerosmith. I want to be listening to the Eagles, you know, but somebody today who's 85 or 90 might be listening to Sinatra or Benny Goodman or you know, Tony Bennett or jazz or gospel.

Kosta Yepifantsev: 14:46

So as these as music engages the neural pathways, is it the fact that sometimes especially when dementia, the syndrome progresses to a certain point, does music allow you maybe not even verbally, but just in terms of body language and attention and interaction, allow you to communicate with an individual who has who's living with dementia? Is that sort of the theory behind it? Oh, absolutely.

Kevin Jameson: 15:19

In fact, there, you know, there is a, there is a kind of part of the dementia landscape called aphasia, where somebody cannot retrieve words, or come up with the word for a particular thing. You know, you or you call it banana, and, you know, a wrench. I mean, there's all sorts of interesting things because the brain is so complex, right? How are these connections made? And why would somebody look at a banana and call it a wrench, but at the end of the day, play a song and sing the verses of that song, they will sing it perfectly? Absolutely. Some people who stutter, as an example can sing well, right. So this is no different when there's, when there's a little bit of a mismatch in our brains with regards to word retrieval, and so forth being lyrical in your communication, singing a question to somebody? How are you today? You know, and that may make an impact on the person versus saying, How are you today?

Kosta Yepifantsev: 16:26

Absolutely. Right. How can technology create more independence, and even more safety for those that are living with dementia?

Kevin Jameson: 16:37

Well, I come from a background of, you know, having sold and marketed electronic sensors for 3535 years. And a big part of that was, you know, door sensors, motion detectors, video cameras, you know, and we're talking about in the 80s, and 90s. And in the early 2000s, you know, this technology is just, you know, really blossomed in terms of what you could do and how much it would cost? Well, today, you know, you can get a camera, you know, on the internet and plug it in, and you're looking at it on your phone, you know, from your vacation in the Bahamas. Absolutely. So you're watching your cat, your dog, but you know, at the end of the day, that type of technology, Zoom technology, you know, this type of teleconferencing that we're doing right now can be really impactful. Because it'll, it still allows a personal interaction, without you having to physically be there. Other things that people can use from a technology standpoint would be the sensors. Knowing when a mom and dad a husband, a wife, a loved one gets up and, and moves or doesn't move, right? If they're if they're not going to the refrigerator, if they're not going to the bathroom, if they're not turning on the water for water, if they are turning on the stove, if they are opening the sun, the gun safe, these are all things that technology can help you with, because the person who's living with dementia may, you know, not be doing the things that they would normally do to keep themselves satiated, hydrated and safe. And so, you know, you can you can add sensors to the home to assist with that. People have introduced apps, and you know, any variety of tools for the caregiver as well.

Kosta Yepifantsev: 18:34

You know, what you're what you're describing is believe it's it's the term is remote supports. And I am curious, like you work with people all the time that are that are not necessarily I'm sure you work with service providers, but you probably talk to a lot of sort of higher think tanks, you know, people that are looking at a problem and trying to quantify it and say, okay, you know, how do we put apply, like a macro application to solving this problem? If we stay on the topic of technology, and primarily on the topic of remote supports, how do you think that it's going to change in 10 or maybe even 20 years as it relates to the care process and for long term care overall?

Kevin Jameson: 19:22

Well, you know, I really can only speak to the dementia side of that absolutely great care because, you know, if you if you if you have a hip replacement, and you talk about long term remote, you know, telemedicine, so to speak, you know, that's, that's, that's different, right? You can you can even film yourself doing your exercises, you can film yourself, you can have a conversation with the doctor, you know when to press the buttons and you know, how to make the connections to that telemedicine visit. Potentially right if you're if you're cognitively intact. But, but what ends it really least to dementia, I'm gonna say the human element is going to be more important than the Tech Tech element. And because because we're human, we're not machines. And, and having a smile, just like you're doing right now, having a smile, having a warm hand to touch your hand, a reassuring voice, that's hard to do remotely, you know, they're getting better with remote robotics, but, but I don't know how warm that handle will be, unless they put a heater in it. So

Kosta Yepifantsev: 20:34

my will though in 20 years, I mean, cuz

Kevin Jameson: 20:37

I'm gonna, I'm gonna say as long as we're human, yeah, we're gonna want human interaction in person. That's one of the downsides of many, that we just went through with COVID as an example, the lack of the lack of human touch, and the social isolation that occurred from that. But going forward, it taught us a lesson that people do suffer when they can't. It's just like, if you if you don't hold a baby, when it comes out of the womb, it doesn't thrive.

Kosta Yepifantsev: 21:09

Right? And it makes sense.

Kevin Jameson: 21:11

Humans are I mean, adults, humans are different. So you know, that I'd say that technology will have a role in certain aspects, of course. But it will never really positively replace the benefit of a human human interaction.

Kosta Yepifantsev: 21:31

So here's the overarching question. So a little bit of statistics here, okay. If humans are the answer, but less and less humans want to work in this industry, healthcare in general, while the aging population continues to grow as a as a imbalance in terms of relative to the other populations. So if the demand continues to climb, but the supply will not have already find enough humans to be able to effectively provide the type of care that will meet their needs, without devoting a huge, if not a outsized amount of resources to the development of supplementation of the human element. Yeah, I

Kevin Jameson: 22:21

get it. I mean, I think that, you know, Costa, here's the thing. Again, if you look at things that are non dementia related in terms of medical conditions, right, so non cognitive related, I think technology will be a will, is today and will continue to grow. And you'll be able to supplant, you know, some of the rehab work that's being done, because you'll do a self rehab, and you'll monitor it yourself. And you'll have others to speak with about monitoring it just like you couldn't do an exercise class or a yoga class online today,

Kosta Yepifantsev: 23:00

right at using the peloton. Yeah, but,

Kevin Jameson: 23:03

but, but dementia is different. And, and I will only say that, you know, the available humans to support that community to support the medical community will probably have to shift upwards towards supporting those living with dementia. You know, if in fact, there's not some and multiple silver bullets, right, because people talk about a cure for dementia? Well, as I mentioned at the outset, it's not a disease, you're not curing dementia, you're you would attempt to cure the underlying causes of dementia. Right? And it's going to be a set in essence, like cancer is today. There are multiple therapies out there, right? You can literally cut out cancer, you can radiate cancer, you can provide chemotherapy, you can provide immunotherapy. And you might have to do all of those things with cancers. So you're you're you may be finding people in remission, potentially, somebody cured of their cancer. And that's the type of thing that may be true. 30 years from now with dementia.

Kosta Yepifantsev: 24:13

Are you pretty optimistic about the drugs that are being approved by Medicare right now to treat Alzheimer's? Is that is that is that a positive? Are we moving in the positive direction? Because it seems that Alzheimer's is, I mean, people that are living with dementia, the statistics that I've seen is that it's about 7% of the population, which is pretty significant. I think when

Kevin Jameson: 24:35

you add up all dementia is it's a much bigger number than Alzheimer's alone. Right. Right. And it could be, you know, our estimates or estimates are it's double the number, right. Okay. So you've got a bunch of folks, you know, they're living with a lot of different causes. And they've been underrepresented. You know, they're not underrepresented, right, and they're not underrepresented at the dimension. So sidey because we're looking out over all causes, and the resulting cognitive impairment which we would call dementia, the severe cognitive impairment. But I will say this, you know, pharmaceuticals in general, have to make progress, somehow. Sure. But we're not a pill popping organization, and we don't, you know, it's not something that, oh, the only answer is a drug. In the same way that the only answer for certain cases of diabetes is a drug, you can also change your eating habits, right, you can, you can improve your your, your, your blood sugar, just by eating differently as well. I mean, you might have to couple it up with with some pharmaceuticals as well. So I think that there, it's a mixed bag. And I would say that the people that are able to and qualify for some of the new infusion technology that's being introduced and pharmaceuticals that are being introduced, if they can afford it, if they're appropriate for it, and they've been tested so that they're an appropriate candidate. And they want to do it for the benefit of others, that there'll be something to be learned out of it. It's a good thing, but it's not for the masses

Kosta Yepifantsev: 26:21

right now. And I I agree with you, 100%. As you're talking, something keeps popping into my mind. And I know, we started this conversation about the confusion between Alzheimer's and dementia. And as you look at the Alzheimer's Association's and just Alzheimer awareness in general fund runs, etc. It seems like Alzheimer's is a, it's like leading the charge when it comes to support for cognitive decline, and trying to reverse some of the effects or at least treat some of the effects of that decline. This is gonna sound like a really silly question. But I just wanted to ask you, since you're the expert, why not change the name of dementia to something else? Because it just it's, it doesn't sell well, too, in terms of getting people engaged with, oh, my gosh, we it doesn't make anybody feel. And I know that I'm making it sound like people are fickle, but sometimes they are. It doesn't, it doesn't provide you with the emotional sort of pull because of the of the term. You know, it's like a variation of demented and

Kevin Jameson: 27:36

yeah, I would disagree with you totally. I would disagree with you totally.

Kosta Yepifantsev: 27:40

Let me know, let me know. I

Kevin Jameson: 27:42

mean, maybe not totally. But here's the thing, you know, is, is cancer a good word? No, no. So there are lots of words. And you know, we as humans need a way to express something, right? We got to put a label on things, whether we like it or not, you know, if you can't put a name on it, it's hard to describe it. Or if you can describe it, you know, it's hard to transfer that knowledge to somebody else. You know, if we didn't call a car, a car, what would you call it? An automobile? A horse with an engine, you know, what would you call it? So at the end of the day, right, things do change, right? When we talk about horsepower, a great example of horsepower. So that was a real thing. Right? How many horses did it take to pull a tractor to pull a cart? So horsepower became, you know, related to engines and engines became related to mobile, mobile devices like automobiles, but I would say no, I mean, Alzheimer's as an example, but Lewy Body, frontotemporal Critchfield, yaka? You know, all of these are distinct pathologies. Technically, today, the DSM five, which is a manual for a lot of psychiatric conditions, and human conditions, you know, medical conditions, cause it major neurocognitive disorder.

Kosta Yepifantsev: 29:15

Okay.

Kevin Jameson: 29:17

And that's fine. But that's a mouthful, right? And actually, people almost would rather hear dementia than Alzheimer's. Interesting. And, and so, we, and this is just coming from the 1000s of calls that come in to us. You know, somebody will say, you know, my mother didn't have Alzheimer's, she had dementia. Well, you know, I don't know what that means, except to say she didn't. She was tested and maybe she had vascular disease that causes the dementia or frontotemporal or Lewy body. So at the end of the day, you know, we impart a negative or a positive on any anything we say If you look at a hot dog from Chicago, you ever seen a Chicago dog? It's got a sickle on it. It's got, you know, celery, see, somebody can look at it and go, yuck. I look at that and go.

Kosta Yepifantsev: 30:15

That's great. Yeah.

Kevin Jameson: 30:17

So it's our perspective, right? Yeah. There, we can change our perspectives. Right? We're able to do that we're human.

Kosta Yepifantsev: 30:26

And literally, that's what you're trying to do every single day. Yeah. And I, I applaud you for it. Because educating people on something that hat we honestly haven't educated them up to up until maybe a few years ago, is quite the task. Before we wrap up, I want to talk about Jenny Gibbs, and named in honor of your incredible wife, Jenny, how is this grant program assisting caregivers and those living with dementia?

Kevin Jameson: 30:57

Right, so we established any goes well, mainly, one, one thing to know is that Jenny and I met on a dance floor, okay. We've always been into music and movement. And she's always she was always very athletic, I was a little bit less so. But the one thing we know for sure Costa is that there are non medical therapies, if you want to call them modalities as another word, that positively impact people living with dementia and their caregiver. So we talked about music, but art, making art discussing art, viewing art, you know, art in general, just creative expression, making music, singing, listening, discussing movement. So things that get us to move our bodies, right, whether it's dance, or yoga, or tai chi, or just simple stretching, holding hands, touch, so any sensory stimulation. So all of these things are in the Ginny Gibbs grants, and any nonprofit care community, they have to be a 501 C three nonprofit care community can apply for a Jenny Gibbs grant. And then we will help them by supporting their program, whether it be art, music, movement, sensory stimulation, you know, and so we're we're doing that and it's, it's their phenomenal programs to see come to life.

Kosta Yepifantsev: 32:28

And you guys are all across the United States and internationally. That's amazing. How much money have you guys donated to this endeavor?

Kevin Jameson: 32:38

Well, I can't say Ginny gives specific because I mean, it's a part of what we do. So, but we have raised millions of dollars, and we've invested millions of dollars. It's amazing. So it not just in Jenny gives but in education awareness, research, we fund research into different types of dementia. So it's uh, you know, we do a lot of different things under the one umbrella.

Kosta Yepifantsev: 33:05

So we always like to end the show with a call to action. If you could go back to 2001. And give yourself one piece of advice on how to navigate dementia and your journey as a caregiver. What would it be?

Kevin Jameson: 33:19

Well, I wouldn't go back as far as 2001. Maybe because I was not aware, I'd go back to 2000 to 2003 2004. And say, once something became evident that there was a cognitive challenge for me as a caregiver. Now, granted, when she had her accident, there could have been a lot of things we did differently in 2001. But we didn't know what we didn't know. But I think the issue is, is that when you do get the inkling of something, then the call to action is take action, do something, get a workup, talk to a professional push through it don't take no for an answer. If and write everything down with a time and date stamp when something happens that's unusual for that person or yourself because that'll create a record of the of the challenges that you're seeing either in yourself or somebody else. And you can present that to medical professionals and it will help them kind of drive a diagnosis.

Caroline Moore: 34:23

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