American Dementia: A Discussion with Dr. Daniel R George and Dr. Peter J Whitehouse

Join us for an enlightening conversation with Dr. Daniel R. George and Dr. Peter J. Whitehouse, authors of the groundbreaking book "American Dementia: Brain Health in an Unhealthy Society". We’ll delve into the surprising revelation that dementia rates in the US are declining, thanks to a series of public health interventions. From vascular health to access to higher education, we’ll journey through the spectrum of factors that contribute to brain health.

Be prepared to rethink your perspective on dementia as we explore transformative concepts of dementia-friendly communities, the role of memory products, and the harmful effects of labeling older people with terms like Alzheimer's. Our discussion with Dr. George and Dr. Whitehouse will shed light on the need for a more personalized and community-centered approach to dealing with these multifaceted issues. We'll also discuss the new payment model released by CMS to enhance dementia care and its potential to foster better-coordinated care and access for underserved populations. 

Our conversation doesn't end there. We’ll tap into the power of arts, nature, and relationships to enhance the lives of those living with dementia. We'll highlight the importance of staying engaged with the American Dementia community and how purpose, play, and relationships can make a significant difference. Get ready to be inspired and informed as we delve into this complex and essential topic. 

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Transcript

Jennifer: 0:09

Greetings. I'm Jennifer Kennedy, the lead for Quality at CHAP, and welcome to this month's CHAPcast. I'm really happy to welcome Dr Daniel R George and Dr Peter J Whitehouse, who are the authors of the book American Dementia Brain Health in an Unhealthy Society. Welcome, danny and Peter, and congrats on the book.

Danny: 0:32

Thank you, jennifer, glad to be here.

Peter: 0:34

Thank you, Jennifer.

Jennifer: 0:35

Well, you know, let's just go ahead and start with talking about. You know some of the things that you brought to the book about. You know, what really grabbed me at first was dementia is going down, and you know when you look at data out there, like, for instance, cms quotes that 6.7 million Americans have some sort of dementia in 2023, and their projection is 14 million projected cases by 2060. So when you read a book that says you know, over the time span that you looked at it, dementia rates are going down, as a clinician myself, I'm a little perplexed. Can you sort of lay that out for me, danny?

Danny: 1:19

Yeah, absolutely, it's a bit counterintuitive because, as you say, the you know, the sort of messaging that we get in the culture is that you know there's a tidal wave of dementia coming and we really have to brace for the cost of that, and you know the sort of tsunami of Alzheimer's that we're going to see. And that's a great way of raising funds, of keeping attention focused on a particular issue, and in fact, the absolute cases of dementia are growing because the population is getting larger. However, the nuance here is that the relative risk of developing dementia appears to be declining quite significantly over the last 30 years, not just in the United States but in other Western European countries. And you know it's a very complicated story that we could get into, but just to boil it down to the most simple parts, it appears to be linked to a few things that we've done really well over the 20th century, which is better treat vascular risk factors, reducing smoking rates, keeping hypertension and diabetes and things of that nature in check in a better way.

Danny: 2:25

The heart is intimately connected to the head, to the brain, and so anything that we've done that's helped vascular health has probably helped brain aging. We also have increased education significantly throughout the 20th century, with things like the GI Bill or the expansion of state universities, pell Grants, things of that nature. Giving more people access to higher education, appears to have improved cognitive reserve, this ability that people tend to have to be resistant to the pathologies of brain aging without showing clinical symptoms of it, and also, of course, lastly, getting led out of gasoline, which we did in the 1970s. In the United States, blood lead levels reduced significantly from the 70s to the 90s. We, unfortunately, are now dealing with a problem of lead in the drinking water, but it appears that getting led out of gasoline was another means of reducing risk for dementia that we're now seeing now for people who are getting older.

Jennifer: 3:25

So I'm hearing you say a lot of like environmental things have had a huge impact on sending that rate downward. Is that fair to say?

Danny: 3:37

That's right. I think it's really a public health success story, even though we tend to think of the quote unquote fight against dementia as a biomedical problem to be solved pharmacologically, and the irony is, of course, that we have had about 100% fail rate of anti-alzheimer's drugs. It's been a real difficult path and yet we are seeing these benefits at the public health level due to interventions, state interventions, state investments, state regulatory successes with things like lead, and so I think there's an important lesson there about what actually moves the needle in terms of public health and where should we be putting not just our resources but our hope.

Jennifer: 4:20

So we're really talking about changing things way upstream, right, way upstream, before people even get to being in that bracket of older adult right that we need some of this change because there are variables that impact your health, and I think that to me, that just makes logical sense.

Peter: 4:44

Well, the trouble with it. You started your comment, Jennifer, by saying that dementia is going down, but I think what Danny is saying, that the lessons we've learned about public health and education and quality of clean water and air we have forgotten. This is the American dementia. Everybody wants to make a buck. We're all out for each other as individuals and not as communities. So we hope that we can tell this story in American dementia, brain health and an unhealthy society, that it really depends, as you say upstream, on the very nature of our society. You know maternal care and infant mortality. This is an intergenerational issue and keeping your brain healthy is the same as keeping your body healthy, and we've just got to do more of that from a public health perspective, in our view.

Jennifer: 5:35

I agree I don't want to get into the whole public health and what is happening as we just come out of a COVID-19 pandemic, but I really do believe that public health has a key piece here to play. Another aspect of the book that really impacted me, as I basically spent the majority of my career out in the community doing that kind of nursing, is going to that holistic look, making it. All the variables that impact a person, you know, be them social, be them environmental, be them medical, to really get a picture of that person in order to figure out what's the best, you know, what's the best that we can do for them. And there's no better way than going to visit somebody in their home to figure that out. You know, I think for me I love that space because I do get to see them, you know, in situ, in real life, and that's where you figure out, well, what's realistic for me to do and what are these other things that other clinicians in a hospital setting don't realize about this person.

Peter: 6:51

That's absolutely wonderful. It's a statement about the importance of nursing, because you do take this bio-psycho-social model out into communities and that's what people need. People want to age in place, they want to find things to keep themselves in their own home and, fortunately, slowly. One of the things we're learning, I think, in the long-term care business and industry is that we shouldn't be necessarily supporting just institutional long-term care, but we should be providing resources to provide the opportunity for people to stay in their homes, and nurses and community visits are such an important part of that.

Jennifer: 7:35

Kudos to that. I would love to see more support to keep people where they want to be at home Dan go ahead.

Danny: 7:43

Yeah, I was just going to layer onto that to what you both are saying. Just in the 90s we had this revolution of person-centered care that Tom Kittwood and others helped lead, really trying to see the whole person rather than the disease and embed them in meaningful social relations. That has evolved more recently to sort of relationship-centered care and now community-centered care. We have this movement afoot called Dementia Friendly America trying to think about how can we make communities more dementia-friendly, how can we dissolve boundaries that wall off people with these diagnoses of mild cognitive impairment or dementia or Alzheimer's from the rest of society, when we know that loneliness is a major problem, where we know that loss of social bonds is a major problem, where we know that getting detached from your relationships can upregulate stress and be unhealthy for people? How do we get back to a sense of community-based care?

Danny: 8:38

And there are a lot of things happening, sometimes opening their doors to people with dementia and their caregivers Organizations like we can talk about Peter's Intergenerational School in Cleveland, which is a remarkable example of this. How do you invite people with dementia diagnoses into serve as reading mentors or mentors to learn alongside elementary school students? But it's going to take some creative thinking about how do we currently treat our elders and how do we currently position them in the culture and how can we sort of reverse engineer some of the stigmatization and segregation that we do with the cognitively frail.

Jennifer: 9:15

Absolutely, and I know that ties into you. Were talking in your book about age-friendly communities, the WHO initiative, so you see all that dovetailing into age-friendly communities.

Peter: 9:31

Yeah, we are a big supporter of dementia-friendly America, dementia-friendly communities. I might mention another movement we've been involved in reimagining dementia, because this is all about thinking about people with that label differently the stigma, as Dan said. The thing I would say as somebody who's developed these intergenerational schools is we need kid-friendly communities, we need age-friendly communities, we need dementia-friendly communities, we need nature-friendly communities. So I wouldn't do community development disease by disease or age by age. We really need to create more livable communities for all of us.

Jennifer: 10:11

I wholeheartedly agree and I hope we can see that moving forward. You know, all you have to do is turn on the TV and you have all of these ads about you know, improve your brain health, do crosswords, do Sudoku here, take Noreva. You know all these different things to you. Know, keep your brain at its best working capacity for whatever age you are. What are your thoughts about some of that stuff?

Danny: 10:41

Yeah, I think HG Wells said advertising is legalized lying, and that's a lot of what you find in this.

Danny: 10:49

What we call marketplace of memory products, which is a multi-billion dollar industry, has largely targeted its products to baby boomers over the last few decades, but increasingly is targeting them to millennials and zoomers in terms of brain enhancement and speeding up your cognitive capacities and things of that nature.

Danny: 11:09

And they do meta-analyses of the data for things like brain fitness apps or video games or nutraceuticals or things of that nature, all of which get marketed to people aggressively. The data is not very strong and I think it boils down to what we were talking to just a few minutes ago about drugs and putting all of our faith in single mechanism cures or solutions to a very complex problem. And we can talk a little bit about the nature of Alzheimer's disease, but it's a syndrome that is intimately age related, and so the idea of throwing one brain fitness product at the problem or one drug at the problem is just sort of, on its face, a bit reductive in its in its thinking. So, as Peter saying, we encourage people to think in a multifaceted, person centered, community centered way about what it means to have quality of life with dementia, what it means to stay vital as a person who may have some memory challenges, as we all have. We're not going to find the answer in a market.

Jennifer: 12:08

Yeah, you know what, I hear you, danny. But when you look at how healthcare is set up let's take CMS, for instance you have to. I hate to throw us into that ICD-10 code thing, but someone comes into the hospital and they have to have a primary diagnosis, right? Or for me, you know what's the terminal diagnosis, and then you can have comorbidities go with it, right, that's fine. But I think that clinicians are trained to what's the one right, what's the top dog right, and some of those comorbidities aren't necessarily considered as a syndrome or a confluence of different diagnoses, that when you put them all together, we have a different picture than if you just say, oh, this person has dementia, and that this is the picture. I think our healthcare system has trained clinicians to think in those kind of capacities due to payment. That's what we're talking about.

Peter: 13:16

Yes. So, as a physician whose work with CMS databases, we've already seen an evolution of the terminology as our understanding has increased. They used to have arterioscarotic dementia or heartening of the arteries, and we're in the wave of a new change. That's challenging labels like Alzheimer's. Alzheimer's, as Danny said, is not one thing. There are multiple conditions under that, and when you get to be an older person I can speak from personal experience and there's a doctor taking care of older people you know that the specific diagnoses are not always as important. There are lots of them, but the fact is it's the function, it's what can you do to improve quality of life.

Peter: 14:04

And sometimes labels like Alzheimer's disease do more damage than good. And this label mild cognitive impairment and subjective cognitive decline. These are other labels that I'm just throwing out that are in this space of people trying to make every older person sick, and I'm going to make a statement here which is perhaps a little provocative. Unfortunately, the Alzheimer's Association does a lot to promote this kind of labeling and this kind of fear that Danny mentioned about how many people are going to be affected over what time period. The fact is, as Danny said, we're all aging. Our cognitive abilities change. The question is, with whatever aging gives us, how can we be personally responsible to take care of ourselves as best we can, taking our medicines or exercising and so on, but also how can we work together to create communities that keep people out in the community and out of those hospitals where more damage can be done to older people than good sometimes?

Jennifer: 15:05

Right, I completely agree. You know, I think it is important. I hear what you're saying and, having worked with a lot of families over the years, they hear one thing Maybe that's your experience, peter but they hear one thing oh, mom has dementia and that's what's going to take her. But then we say, well, mom has dementia and she has high blood pressure and she has diabetes. So all of those things come together to bring whatever outcome they do. When I look at people, just because I have street cred as a hospice nurse, it's like what contributes to the terminal prognosis. So I think let's take the terminal word away from that. What is the person's prognosis if they have a handful of chronic illness and dementia has to be one of them?

Peter: 15:58

Yes, absolutely. And since you've mentioned hospice, I think that's a very important benefit we have in this country because we all have that. This is an old joke, but I mean we all have a terminal illness, we all die, something the Americans particularly want to avoid, but the quality of death and the quality of life become intimately linked. Once again, it's not hospice necessarily bringing somebody into the hospital or into a hospice facility, unless if they want something, need something like pain control. But so much of that can be done in the home keeping somebody in community doing the kinds of things that have made them human their entire lives and keep them human until their last breath.

Jennifer: 16:45

Absolutely. I couldn't agree with you more. Another thing that stood out in the book and I have a vested interest in is health equity, and I thought you did great coverage on health equity and, danny, you talked about in a podcast I listened to recently and you all talked about things like poverty and lack of education and oh my gosh, lead in water. All of those things have an impact on not only brain health but all health, all kinds of health, whether you're a pulmonologist or whether you're a neurologist. All of those things have an impact. I'll talk a little more about that.

Danny: 17:34

Yeah, absolutely. That's a key part of the story. I think Mentioned the concept earlier of cognitive reserve, which is this finding that for people who have more years of education or who challenge their brains over the course of their life by learning, by traveling and things of that nature, you can sort of stave off dementia later in life. Maybe your brain is structurally or functionally able to just be resilient to those aspects of brain aging. And, of course, if you're impoverished, if you're somebody who is exposed to lead in your environment as a child, if you're somebody who has less capacity to exercise over the course of your life, if you're somebody who has less nutrition over the life course and on down every risk factor for dementia, you know you're going to be at higher proportionate risk later in your life.

Danny: 18:27

And we have a chapter in the book specifically about Flint and you know who is most affected by the Flint crisis.

Danny: 18:33

It's the poor people, mostly black population living in the inner city of Flint and if you go to any municipality in the United States there's going to be lead in the water.

Danny: 18:42

The people who are subjected to that are largely folks in lower income brackets right, largely people of color, and so those people are going to have diminished cognitive reserve later on in their life, and so the threshold for converting to dementia is just going to be less for them. And so we really do have to think not just about cognitive reserve, but what Peter and I promote in the book is a sense of population reserve. How can we as a society collectively make investments across the whole culture, things like the GI Bill and the Clean Air Act getting led out of drinking water or led out of gasoline in the 70s? How can we make those kinds of investments that scale across the whole population, instead of being like boutique products in a marketplace of memory that the wealthy have access to right? And so we really do need to think about dementia not just as an individual illness, but at the population level. And how can we organize and collectively invest to reduce risk for everybody?

Jennifer: 19:44

So let's say I live in an underserved community and I don't have great access to healthcare. I have lead in my water and I might be trying to do all the right things that I can eating the best that I can, exercising the best that I can but there are it sounds like there's factors out of my control.

Peter: 20:04

That's right. Then the role of the person as a citizen becomes important, because our title is brain health in an unhealthy society. Society is all of our responsibilities and you don't want to put more burden on those that already have a lot of burdens. But, as Danny was saying and simply put, it's income inequity, it's the inequity that comes from a neoliberal, that's a market fundamentalism, which is the huge, the greatest problem in the world. It's not just America, that's to say, the very richer getting richer and the poorer getting poorer.

Peter: 20:42

When you talked earlier about upstream, jennifer, that's exactly what we're talking about. We need to take action together to change our entire civilization. We often say Alzheimer's is more important than Alzheimer's. Why? Because if you rethink what we're doing about Alzheimer's, which is focusing on the medical side and the research side and don't focus on where we all live together, which is a society that unfortunately has its American dementia, we are not in a world of sustainable behaviors. And I will say another plug which comes out we've talked about environment. The climate crisis is all of our problems. I say the greatest threat to people with dementia is the climate crisis, because people who have a dementia can't get away from droughts and floods. They get dehydrated, as you all know, jennifer. So that's another huge upstream social issue we've got to work on together that dementia brings a magnifying lens to. But it is not a problem of just dementia, it's a problem of our entire society.

Jennifer: 21:51

Well, I live close to Washington. Maybe I should take a big stick down there and get them on the run from doing some better policymaking. I don't know if I could do that myself, but CMS recently put out it's a payment innovation model and it's specifically for individuals diagnosed with dementia. It's the first I've really ever seen them do anything that was disease specific and I quoted earlier to you their data that they're showing and their projections, so they're testing the waters with this model that really just taught. The model is talking about doing good coordinated care, particularly paying attention to underserved populations, making sure they have access and have a hand holder through their medical care. It also is looking at whether the social factors that impact this individual and hey, here's some support for your caregiver. Just me describing this, and I know we gave you a little look behind the curtain with the CMS fact sheet what is that dovetail in with your thoughts about where America needs to go in terms of doing better with brain health and keeping that dementia rate going downward?

Peter: 23:31

Certainly I celebrate that CMS is paying attention to this issue. They tend to neglect long-term care and those kinds of issues in general. I mean, the big problem with that is who's going to provide that care, and you know, community health workers and people who are out in the community just are not adequately reimbursed and paid. So we're not going to have a caring society until we pay the people who provide care more, and in that little graphic the person and it appears to be a man who is helping them, and then the CMS model has a white coat and a stethoscope on, and so I. There is a community worker there involved as well. But CMS has got to somehow figure out what you were talking about before. It's not all doctors who need to get paid, it's not all diagnoses, it's people that actually can provide the hands-on care in community. So that worried me a little bit, because we don't need more high-paid doctors. We need more better-paid social workers, nurses and community aides community workers, in my view.

Danny: 24:36

And on that note, we should probably thank you, jennifer, and your listeners, for the work that you do on the ground, because it is vital and important work, and we, unfortunately, are in a culture that focuses disproportionately on cure and the biomedical approaches to these problems. But what we do try to shine the light on is this focus on care as being primary and the focus on prevention as being primary, even though those aren't as monetizable as the cure path. But that's where our humanity is right, that's where our collective responsibility is, that's where our values together can be manifest most clearly. So just want to thank you all for doing the work that you do.

Jennifer: 25:16

Thank you, and you know what I agree with you, Peter. I think this is a first boat float in the water. You know it's a demo, it's a demonstration project. Hopefully there'll have enough applicants that will want to dip their toe in that water and see what it's about, and hopefully the outcome will be that there would be good data on the backside in terms of payment, in terms of structure, all of those things where a better program could be built. But I applaud them for even putting it out there. This is pretty big for them to do that. With my years of experience and, Peter, probably you have a wealth of experience interfacing with CMS as well- Well, I think you're right.

Peter: 26:08

I mean, CMS has billions of dollars in their innovation fund. They're just so huge and I think we can look with hope to the pace. The program for all inclusive care for the elderly, which did start just as the way this guide is program is starting and then eventually became a demonstration and then eventually became reimbursable services and for those of I'm sure most of your readers know about it, but basically it is centered around community services. The idea is to try to keep people in their homes and in daycare and in the community. So, yes, absolutely.

Peter: 26:49

Cms tends to focus on where they spend a lot of money, so they've been spending a lot of time trying to keep people out of emergency rooms. Well, that's not a bad thing too, because as a doctor taking care of people out in the community, the last thing I wanted to do with a patient with dementia or an older person in general was to take them into the hospital environment. So, the more that CMS and the more that the long-term care industry can keep people out of hospitals and nursing homes and in the community, let's see more innovation in that space. Jennifer, I can't agree with you more.

Jennifer: 27:22

Absolutely. You know, my experience has been that we have patients who, with a dementia ICD-10 diagnosis, come to hospice and then they get a little bit of TLC, good support, interdisciplinary care, and guess what happens? They plateau right. Medicare benefit tells us we have to discharge them back out because they're no longer terminally ill, you know. So I'm hoping maybe this demonstration, with that interdisciplinary approach, some build-in for the caregiver, you know, will help where it's needed in terms of dementia. All right, so I'm going to close out with a last question for you both, and that is what are your thoughts on how providers can enhance quality of care for patients with dementia? We know that in all areas of the care continuum in America, clinicians are seeing patients with dementia. How can we enhance quality of care for those individuals?

Danny: 28:36

Well, peter is a clinician, so I definitely will want to hand off to him on this. But I can just push a concept that we talk about in the book sort of tongue-in-cheek but in a serious way, which is social pseudicles. So this is obviously a concept that is juxtaposed with pharmaceuticals, which, again, have not been very effective at all in dementia care. But what we do know works is a focus on purpose and play and relationships, and there are things like bringing music into dementia care settings, bringing intergenerational relationships into dementia care settings.

Danny: 29:13

I have my medical students do creative storytelling project called time slips, which engages the imagination of people with dementia. Opening minds to art is another way of using visual arts to empower people with dementia to be expressive through artwork. There are a lot of different ways where we can use the arts that connect to something quintessentially human in somebody who may have memory challenges and create relationships around them, and exposure to green space is another very important one that has been has increasing data around it. So how can we think creatively about improving quality of life, creating relationships around people with dementia, using the arts, using the resources in local communities? That would be where I would suggest we spend some imaginative time.

Peter: 30:05

So I actually think it's interesting that Danny answered that question, because he answered it in a non-medical way, which I think is the way I would answer it too. The way to improve quality of care is not to think of it as a medical problem, to think of it as an issue around a person trying to live in community. That said, I would say one thing that you should do is to be nice to young people, so I'm hoping that Danny will provide some care to me as I get older and will notice when I become a little unable to remember how I called him, dave or Dan. It's Danny, I got it right this time. The other thing is yes, I write prescriptions for dance literally. So that's a sociosutical. I can't say the word either, but the idea that it needs to be. Now I should say it has to be based on the interest profile of the person. If they have not been a dancer, okay, well, maybe you can pick something else, but everybody loves music to one degree or another. So music, dance, socialization, which dance gives you, storytelling, which dance gives you. So I picked dance because it's an artistic combination of lots of embodied things, including relationships. So, yes, so this is absolutely how you improve the quality of care. And the other part of this, of course, is that for as long as we've been a species, it's been the family that have cared for people with dementia. So informal care and formal care sometimes really can't be separated entirely. It's supporting the caregivers, giving them time and educating them. And I'm going to end with a quick story, because if they listen to all the hype from the Alzheimer's Association and they only think of it as being a caregiver burden, I sometimes say you create a patient, then you create a burden.

Peter: 32:04

Caregiver Caregiving can be joyful, it can be difficult, but it's also a part of life and so the idea that we should. For example, I was working with folks where a woman was crying frequently and it became very clear she had a condition that I'll use the medical term for, a pseudo-ball-bar affect, which meant she just couldn't control her emotions. So the idea was to tell the caregiver not to drug her but to say look, she's got a little bit of emotional dysregulation. It doesn't mean she's sad, it doesn't mean every time she cries she's unhappy. Know that that's just something that happens and you can adapt to it by being supportive but not going overboard with regards to, for example, as I said, giving medications, which is something that often happens. So just understanding the range and variability, what can happen, and that's personalized medicine, it's learning the story of the caregiver and the person and giving them information that's helpful to them, the response to the particular symptoms and interests that that couple or that family has had before dementia occurred.

Jennifer: 33:18

The individual care plan. It's a beautiful thing. I love it. Well, thank you so much, danny and Peter, for joining our CHUPcast today to talk about your unique and innovative look at dementia in the US today. Any final thoughts for our listeners?

Peter: 33:42

I think an overarching theme is a person with the label of dementia or Alzheimer's is first and foremost a person. But to take away that humanity because they have that label, and engage with them as you would with anybody, recognizing that we all have our strengths and weaknesses as we get older, so bring forth the humanity and diminish a bit the exclusive focus on making it all medical.

Jennifer: 34:13

Thanks, peter, that's great, danny.

Danny: 34:16

So yeah, just in closing, I'd like to say you know, let's keep the pressure on our politicians and our institutions to actually serve people and truly bring about equity and equality in the country. And you know, to connect with what Jennifer said earlier, we should all speak softly and carry a big stick and let's keep that pressure on Washington. And just to add on to that, you know people can continue the conversation with us. We have a website, AmericanDementiacom. We're also on Facebook. People can find us at the Myth of Alzheimer's, which was our first book. We have a community there that we share articles with. From time to time. People can engage in an ongoing dialogue about these issues with us there. So, yeah, please just stay in touch with us, and we appreciate everybody's interest.

Jennifer: 35:00

Well, thanks to all of you for taking time out of your day to join our podcast. Hopefully you took away a lot of pearls of wisdom. I know that I did about dementia and a different way to look at it. So, from Chap and myself, thanks for all you do and be safe and well.