Caregiver Engagement Is the Missing Link in Dementia Care: Why Empowering Families Drives Better Outcomes and Lower Costs

What's up everybody? It's David. I'm your host of Highway two Health podcast. Thank you for being here. If you know anything about this show, you know it's about celebrating the people, the organizations that are committed to improving access, experience, outcomes for our patient population. And, every week I'm surprised, I'm honored at the awesome experts, advocates, and guests that we get on the show, and this week's no different. You're going to meet the CEO of a company called Seresti Health, Dirk Sungson. Welcome to Highway to Health. Nice to meet you, Dave. Thank you for being here. Thank you. We we learned that we we've got something in common. Two things in common, actually. I was born in Germany. You're from Germany? I'm I was born in Germany as well. Yeah. Okay. We both have torn rotator cuffs. Yeah. Mine is fixed and yours is not. And we don't mind a podcast or two, that's not bad. Well, we're gonna talk about some good things. You guys are doing some amazing things for a patient population that's first of all, it's growing, and so the need for support and services is growing. It's a complex model to serve and support this patient population so we want to get into that. I Appreciate you being open to having this kind of conversation, educating and engaging the community, but we start every podcast the same way. You're a busy guy. You have a lot on your plate, but maintaining mental, physical health is important so that you can be a high performer for those you love and those who count on you. So what's one habit? What's one thing that you've implemented into your day? I live in an area where I can go on a walk, which is like a hike. So I do that without my dog drags me around the hike in some cases. Hasn't learned to walk on a leash and then once a week if I can manage it I go out on the tennis courts. Yeah. I don't do that but but yeah so that's kind of what I do. Get outside. Get your body moving. Yeah, that's right. Right. Love being outside. Being outside is important to me. I don't work out well inside. I'd rather be moving outside. I live in San Diego, so you can be outside all the About three sixty days out of the year, you can be is almost that good. It just gets a little hotter. No kidding. I think it's important for our audience to know that as busy as you are, as busy as they are, your mental and physical health, it's everything, and we've got a personal responsibility. Yeah. And so are you a morning person? You're a night person? Or, look, I've got thirty minutes. I'm gonna go get outside. I think if I if I allowed myself, I'd be a night person, but I end up being more of a morning person. I schedule calls early in the morning on the West Coast to kinda Sure. People on the East Coast. But if I wasn't working I would probably gravitate to being a night owl. You almost have to do it in the morning or else the day gets away from it. Same here. So tell us about Seresti. So Seresti, we founded this with the mission of really trying to improve the experience that people have living with dementia in the home. And I've got to say, it's just a horrible condition the sense that it's a family disease. So it impacts a person who has dementia, but then it almost impacts the family more because they have to take care of somebody who in some cases doesn't remember who they are anymore, can't take care of themselves. You know, when we talk to people who've been through this experience, right, it's hard not to get really emotional about how tough this is. That's, you know, the number of people that are having to deal with something like this is growing, and so you hear these stories. From a service or support model, you mentioned other cases or other patient engagement models where you're supporting the patient, whether it's a diabetic or somebody with heart failure, whatever. You're engaging and educating and guiding the patient. You can't follow that model with dementia. Dave, this is absolutely correct. This is like a huge insight. It sounds so obvious, but the world of care management, right, which is payers and providers that are in value based care, the world of care management is how can I engage that patient? It's word called patient engagement. Right. And it just doesn't work for somebody who is cognitively impaired, right? So for somebody with dementia, it's also true for somebody with advanced stroke or traumatic brain injury, and other like traumatic, yeah, other conditions. So it doesn't work because the person is unengageable. So as a result, people with dementia are kind of outside the health care system. So that's kind of sad because it's a growing population, and it's an expensive population. I want to touch on the cost of this care or the cost of not having access to to the right care, not just to the patient, their family, but also to the system things like that and why this model is important. The caregiver is so vital to improving the experience and even the outcomes for the dementia patient. What gave you that insight? What gave you that idea or that model that led you down? Okay, there's a caregiver model here. There's a family model here that even could add scale to supporting this patient population if we could educate and Now it's obvious you need this. If you talk to the right type of a clinician, they'll tell you the caregiver's important. The way we got involved in this, we started early on with something direct to the patient. We tested it kind of in a memory care facility, and it kind of worked. We got some pretty good results. Then we took it into the home, and it just like didn't work. So we would go into the home to try to do something with the patient, and the caregiver would be upset with the person living with They'd yell at them, and it just wouldn't work. So we got this great experience with the person and then the caregiver would take all the wind out of the sails. So we immediately said we have to go to the caregiver. So we actually had that experience early on, it's probably like twelve years ago when we were just experimenting to say for this model the caregiver is the key. And it makes a lot of sense. So we really started to focus on engaging the caregiver versus engaging the person. Because there are things you can do for somebody with dementia. There's like reminiscence therapy, there's validation therapy, but these are very sort of small episodic things. The caregiver decides, are you taking your meds? Are we going to the doctor? Are we not going to the doctor? Am I going to, you know, I'm going to say be nice to you versus be mad at you because you keep asking me the same question. A big part of what we try to do is we try to get people to understand what the disease is because if you understand how it impacts your brain you're much more empathetic because you say they can't help it. Otherwise you'd be like why do they keep asking that same question over and over again? Why do they keep arguing? Why do tell me some reality that's not true? And once you understand the disease, you know how to react to those moments with compassion and empathy, and then the outcome is much better. As you're talking through this, it also gives them the information that they need to understand what is a red flag and what is not a red flag, I would imagine. Know, bad example, but a cancer patient who has a rash around their port, hypersensitive of that, the patient is going to maybe default to the ER which is costly for the health system, costly for the patient, the payer, everybody involved, right? And in that situation, you could educate the patient on if this is an emergency or not. In a similar way, you're probably educating the caregiver on what is an emergency and what is not so that they can maybe take care of something in the home versus taking them into the ER or to the visit. So what you're getting at is actually one of the biggest gaps for somebody with dementia. They can't, some can, but most people with dementia cannot tell you when they're in pain. You sort of say, how's that possible? That's part of the disease. Can't tell you how they're feeling, right? So as a reporter of what's happening, if a doctor talked to somebody with dementia, they really can't rely on this. Sure. So it turns out, this is actually like a simplification of the disease. If you have an infection, your urinary tract infection, pneumonia, you have a cut that's becoming infected, or you have some unmanaged chronic conditions, you're gonna have the same sort of behavior. You're going have a change in condition, which could be you're more agitated, you sleep more, you sleep less, you have more appetite, but somehow the person who knows you best, which is your spouse or your family members, can say something's off with mom or dad or my spouse. So that change in condition clinically is the trigger. It says something's off. Now most people would say, you know what, something's off, let's just wait. I don't want to bother the doctor. And so as a result, is why people with dementia go to the hospital three times more frequently than people with the same chronic conditions without dementia. So that's the multiplier effect. And then you say, why is that? It's because the person can't report, the caregiver doesn't know what to do, and the person who has the disease also can't access the system. They can't say it hurts, they have to go to the hospital. So this is largely a problem that can be addressed if the caregiver knows what to do. So as part of our approach, we try to we call it activate. We try to change the behavior of the caregiver so they recognize that changing condition, and then they reach out to their loved one's primary care physician. It's super simple, and it really works. But it requires understanding that for dementia, and it's really unique to dementia, this changing condition is the tell. Right. That if you do nothing, you're going to be in the emergency room in two or three days. So what do you say to skeptics that might say no matter the support, a family caregiver can't adequately support a dementia patient? Well, so the conventional thinking in health care is a doctor or medication is what's needed. This is not true for dementia. I mean, yes, there are some cases where medication is needed and so forth, but dementia is largely not a medical challenge it's a social challenge. So you need more of a social model than a medical model as a frame right now of course you have to have the right medications you have to you know make sure that they adhere to the care plan, nutrition matters, all that stuff. But the gap in the system is inability to access the system by the person who's cognitively impaired. That's the gap. So that's largely what we're solving for. So to people, and we come across folks who are physicians who believe a solution requires a specialist. And, you know, we don't think that's true and our evidence is we have like amazing data proof points about outcomes including cost savings in this model which really engages the family caregiver primarily. Let's say a specialist was the right path. Are there enough of them to support this population? Probably not. So how do you achieve the outcomes at scale? The answer is the caregiver, the fam, the familiar caregiver. Yeah, and Because they're there already, most of them. So if sort of so you're right. On the specialist dependent model, you have a scarcity, right? Because the types of physicians you might think about might be a neurologist. There are not enough of those. Or a geriatrician. There are even fewer of those. So it's very hard, they're more expensive. So that really doesn't work. But most people have a doctor, a primary care physician. So in this model, we're really thinking of the primary care physician as the quarterback of the care for the person. And the issues that need to be dealt with have to do with an infection, with chest pain, like breathing issues, or medication adherence, like diabetes medication and so forth. So the issues are treatable by a primary care physician. And the physician knows exactly what to do if the patient was presented and you knew what was going on. So largely we're taking this family caregiver who wants to help, who loves the person, at least in most cases, but who loves a person to want to do something. And they have a doctor who's perfectly capable of managing all the challenges. You say, well, why doesn't this work? So we're making that work. But the other benefit, Dave, is we're not changing the health care system. This is really, really important. Most innovations bypass the health care system. Oh, I'm going to bring in some specialists, I'm going to do something different, and then I can compensate for the weakness of the health care system. And for some conditions, it's absolutely essential. If you think about conditions like kidney care, you need a nephrologist, so you need to introduce them into the system, adds value. For dementia, you don't have to change the healthcare system at all. You need it to work the way it's meant to work? You need to just make sure the patient gets to the doctor in the right moment, take off all the psychosocial challenges of dementia. So, you know, my loved one won't shower, they're wandering at night, they're incontinent, right? The doctor doesn't know what to do with that, right? So when people come and ask the physician, I have this challenge, they're like, well, what do want me to do? I went to medical school. So we take all that off the plate for the physician, then we teach the caregiver how to engage their loved one's primary care physician to leave a really crisp, effective counter, which unburdens the physician and their whole office. So it's actually like a beautiful model in the sense it's so simple, and it doesn't require us to bypass the system with specialists. It's a very different model than most of the conversations I even have on this podcast. It's about this new shiny thing, usually, or this new way of doing it. Yours is like, no, the resources are there. We just have to use them the correct way. That's right. It's almost a democratization of this care process, of this care management between the family member, the caregiver, the primary physician. But this brings us to next question, which is around reimbursement. Almost every type of innovation in healthcare, that's the number one question. Who's going to pay for it? Yes. And I saw something online from you actually that said, you know, we didn't want to be a patient responsibility model, which then requires you to get payers on board and carriers on board, which you've successfully done, whether it's Medicare or others. There has to be a reason for them to get on board, as great as they are, it's usually not because it's a moral or ethical thing to do. There's got to be value there, and you're seeing that. You mentioned cost earlier. Tell us a little bit about how this helps avoid large costs for the system and the payer. Yeah, so you're right. When we set out, we wanted something scalable. Right? So we it it had to be something we could do remotely so it could be scaled. And then we said we don't want this to be a direct to consumer play. We just felt like that was not gonna allow us to build something meaningful and big. So as a result, the economic value has to be captured by somebody else. In our case, for an organization that takes risk, that could be a Medicare Advantage Plan, could be an account holder organization, they're interested in cost savings. Right. Because they get a capitation and if they can deliver care without compromising quality at a lower price, they benefit. So one of first things we recognize is we're gonna have to prove the economic value. So there was a period in our company's history, I call it our biotech period. We were doing clinical studies, we're doing with payers, we're getting claims data, and we were proving that we could actually keep people out of the hospital through a very simple model of care. And so we have two plans with whom we've completed studies, have a third ongoing. And to most people who understand how hard it is to get results, they're like, this is pretty damn amazing. And what I keep saying is nobody's ever tried to cure manage dementia. It's just been, ignored is too strong of a word, but people have not recognized the opportunity and in part also not the problem. So now that that's becoming more obvious, people are sort of curious like, well, what could you do? And so we've been very successful in working with organizations and partnering with them, not only to improve quality of care, which they all care about, but at the end of the day there has to be a financial rationale. So we achieve about six thousand dollars a year per patient in cost savings. That's a big amount of money. Especially when the average Medicare patient is, what, about twelve thousand dollars a year? The average person with dementia is probably twenty five thousand to thirty thousand dollars right? So we're talking about But if you're saving six That's like twenty percent, twenty five percent of the annualized costs. And the other thing to recognize, it's actually harmful when somebody with dementia goes to the hospital. So it's not only that the payer is paying, but it's causing harm. Because when somebody with dementia goes to the hospital, they come out worse. Really? So they come out with a stepwise decline in cognition and function. So they may not be able to brush their teeth when they come out of the hospital. You say, well, why is that? Well, it's because it's such a traumatic thing when you have dementia, You're used to you like stability. So you go into this place, you see all these strange people, you're in a bed, yell at you, right, because they don't think you understand. And it's traumatic. So you come out worse. So when you come out with less ability, what happens? The burden on the caregiver goes And the whole thing repeats itself. So the most harmful thing we can do for somebody with dementia is allow them to go to the hospital When they don't need it. When they don't need it. And I would say this population has the largest amount of avoidable hospitalizations of any population. So it's a fruitful place to go if you actually want to save money. For people who are in this managed care world, they don't think about this, right? Because they're only thinking like where can I engage my patient? And dementia drives over twenty percent of total cost of care. If you add stroke and Parkinson's and other conditions where the caregiver could have an impact, you might be talking as much as one third of total health care costs could be impacted by a caregiver model. This is huge, right? I think it's huge opportunity for the entire system. Exactly, exactly. And then, you know it's cut patients with dementia it almost seems counterintuitive to talk about outcomes, but you just described how it's improving the quality of life, improving the quality of outcomes for these patients if we can keep them out of the hospital, and I don't think that should go left unsaid. You said it's been maybe ignored, maybe just left un researched, but it was because, and I've heard you talk about this in the past quickly, the data was hard to find, right? It was hard to identify these hidden costs with dementia patients in that population because it's not just black and white in the claims data. Well so here's an example. If somebody has dementia and they go to the hospital because of congestive heart failure, the first thing that'll get coded is a congestive heart failure. So when you look in the claims data, it's not obvious that there's dementia unless you look in all the diagnostic fields and say, oh, there's dementia. So what we would say is that's because of the dementia that this person with congestive heart failure went to the hospital. And if you actually look in all the diagnostic fields, and then you sum up all the people that have dementia in their fields it's the second most expensive condition in Medicare. It's unbelievable. So most people and we have some really renowned people that help the company that are on our boards they say nobody's ever brought dementia to me as a target Because you typically look at the first or second diagnostic field say well is that congestive heart failure, is that diabetes, is that COPD? But if there's dementia somewhere else, that's the likely reason why the person's in the hospital because they can't self manage that condition and the caregiver doesn't know what to do. So when we look at claims data and then we look at a matched group against people in our program, we see that we're actually reducing hospitalizations from sepsis, falls, hypertension, unmanaged diabetes, UTIs, pneumonia, which are all the conditions that people with dementia go to the hospital for. The vast majority of them are not necessary. I've been a part of that claims world, and that claims data has many layers to it. Yes. And you have to almost know what you're looking for to find the information that you need to understand the scope of something and the list of things to look for is really long in health care. It took us many, I mean five, six years and we're still digging and still learning. But you know we as a small company we decided early on we have to become really good at this claim stuff and no disrespect to any actuaries right but actuaries are actually not really trained and doing these types of cost savings analysis, They're looking more at like pricing models and predictive stuff. So most health plans don't have a lot of people who can do this kind of work. So this is why we brought it in house and then we're usually doing this work for partners, books so they can check the math so to speak, But this work is very specialized to the disease. And this coincides with something that's going on at a larger scale, the guide program, the guide model. Tell us a little bit about that. Yeah, so think about it. Here we are this little company, telling everybody dementia's a problem. Yeah. Right, dementia's a problem. Yeah. And people are just like, yeah, yeah, yeah. Right? So now the federal government, the Center for Medicare and Medicaid Innovation, has established a dementia care program called GUIDE. It stands for Guiding and Improved Dementia Diagnosis. You had to apply, and we applied, you had to be accepted, and we were accepted. So essentially what this does, it gives us a billing code for providing our service. The service we've provided for almost a decade to health plans to traditional Medicare patients. So there's MA Medicare Advantage. They're not eligible for the guide model, but all the folks on traditional Medicare or fee for service Medicare are now eligible. Okay. Right? So this is why we can target accountable care organizations and other groups that have large numbers of traditional Medicare patients or members. So in some way it gives you a ton of credibility to say, look, we've been doing this for a long time, Glad you are finally catching on, and we want to be a part of this. You know, I mean, there's an old saying, if you stick around long enough, right, good things happen. So this this is truly a nice tailwind. Yeah. And I think, to be fair, like, CMS has been researching this for a decade, and they've been looking at this and really learning from some of the academic medical centers who some have received grants to sort of say like what is best practices, right? So they came out with a list. I'd say eighty percent of what CMS says you should do we've been doing all along. We had to add a few things to it. But our model of detecting a changing condition in the home is still unique to us. This is not a guide requirement. Right? So of all the people who are doing guide, we're the only ones who have caregiver enabled models and we're the only ones, as far as I know, who have multiple studies with statistically significant cost savings. So as a result, we can take risks, we can make guarantees to people that people who had different models of care probably wouldn't be comfortable making. And anybody who has either been a caregiver or knows one, The emotional, the mental, even the physical toll that it takes on that person is pretty incredible. Just give us a little bit of an idea of the kind of support that you provide the caregiver itself. We've talked a lot about the patient and the needs and the support that they need from the caregiver, but what about the caregiver? Yeah, so we have these individuals called coaches. They're called care navigators in the guide lingo. These are, think of them as social workers, and they're highly empathetic. They typically have a lot of experience, the ones we hire with dementia. And they become like a trusted partner to the caregiver. It's always the same coach for that caregiver, so there's a trusted relationship that's built. In some ways, we almost become an extension of the family. And then we're there. I mean we're there to listen when they have challenges. In some cases we educate them, right? We deliver a tablet as education on the tablet. Sometimes our coaches cry with a caregiver. I mean it's amazing. And then we are told through testimonials that we're a lifeline for many of these people. Because you have somebody that really knows what you're going through, who's there whenever you need them. So there's an emotional support, there's sort of an educational support, and we've been told by people that this is something they've never experienced before. This is a program which is probably unlike any program that's out there. We get over forty minutes a week of engagement. So what would you do for forty minutes a week forever? It would have to be pretty damn good. Pretty good. And people do this voluntarily. They're not paying us. This is a free program to them. It's underwritten by either the government or by a health plan. And then when we look at the mental health of the caregiver, which we can measure, we're improving that. So we see fewer self reported mental unhealthy days. We see a reduction in loneliness. Obviously the satisfaction is high and we see a change in behavior. So we see that we're activating that caregiver so they have the confidence to engage their health care system effectively, which they typically don't start with when they enter our program. So it's a huge impact on the family through the primary caregiver. There's a huge sense of loneliness a caregiver because they don't feel like anybody can relate to what they're going through. And you can't leave the house in many cases because you can't live one alone. Right. So one of the benefits of the guide model is a respite component, right? So the federal government in Medicare traditional Medicare, now will offer Really? Two thousand five hundred dollars worth of respite care. You have to be eligible, so it's not all caregivers. But if your loved one's dementia is advanced enough, it can come in the form of home care. So you might get like fifteen to twenty visits a year where somebody can come to your house paid for by CMS and you can go shopping, go to lunch with a friend, go watch a movie, go, you know, whatever you want to do. It's truly amazing. So this is part of, you know, the burden because if you think about it, if the caregiver sort of goes down, right, if the caregiver gives up or gets sick, their loved one has got no chance. Keeping the caregiver resilient and supporting them and keeping them confident is essential to maintain the ability of the person with dementia to continue to thrive at home. Otherwise, I give up. If you have the money, you pay for assisted living. If you don't have the money, you move into a state SNF, skilled nursing facility, and it's unfortunate. Right? Then Yep. Then the quality of life can can be reduced. Not saying all assisted living is like that but most people prefer to be at home. They want to be at home right but at some point you make the decision when the caregiver says I can't handle this anymore. Right. Which is emotional toil or somehow something in that person like their behaviors or other things are no longer manageable. Right. I mean for stuff to work in healthcare, it has to be a no brainer. It has to be a yes, a benefit to everybody involved. Yeah. You found a way to save the general practitioner time, take things off of their plate, support the caregiver, deliver a better outcome and experience for the patient, and save costs for the payer. Payer, provider, patient, when all those three things are yeses and time savings, cost savings, and quality of outcomes and experience improved, you've got something that really can be powerful. It's very rare in healthcare where there's alignment between the payer and a patient and the family, Because the payer would say, don't want pay for that, the patient says, I need it for my improved health. Full alignment here, right? Everybody should be fully on board with minimizing avoidable hospitalizations. If you cut your hand off, you've to go to the hospital. No problem, But again, most of the time somebody with dementia has no business in a hospital, and the payer would say, well, I'd rather not pay for that. So there is full alignment, which is very unusual in health care. So it's one of the few areas where I think you can celebrate that and you can actually promote that. Agreed. What's one thing you want our listeners to remember from this conversation, the one takeaway? Yeah, so I think if you are a payer or provider, I think the takeaway is this is the second most expensive condition and take the time to look in your own claims data or ask us to help you to identify this problem. Because once you really internalize the problem, you're more likely to say, I want to do something about So that's the message for somebody who might be a value based care payer or provider. I think for the family, particularly if it's a traditional Medicare family, go to the Guide website. There's a list of three hundred participants. There's some that are going to be in your general zip code. We think we have the best program, but any guide program will add a lot of value. So I think awareness around this guide model is huge. Most people I talk to have never heard of it, and it's there, right? Then once you become aware of it, you'd be like this is truly, truly amazing. Thank you for being here. Yeah, thanks for having me. Appreciate it. Enjoy the conversation. Yeah, thank you. Thank you all. Okay.