Good Neighbor Podcast: Milton & More
Bringing Together Local Businesses & Neighbors of Milton, Crabapple, and Hickory Flat
Good Neighbor Podcast: Milton & More
EP #142: Emory Integrated Memory Care Practice with Dr. Carolyn Clevenger
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Unlock the mysteries of dementia care with Dr. Carolyn Clevenger as she introduces us to the innovative Integrated Memory Care Practice, a sanctuary where primary care, dementia expertise, and caregiver support converge with grace. By prioritizing the often-overlooked caregivers, Dr. Clevenger's approach sheds light on their indispensable role in managing the cognitive complexities dementia unfurls. You'll be moved by heartfelt patient narratives that bring to life the transformative effects of customized care, and learn how caregiver-only sessions led by an empathetic social worker can navigate the intricate maze of family dynamics and individual psychological needs.
As we trace the contours of a dementia care program that's rewriting the narrative of aging, you'll be inspired by the power of in-home visits by a dedicated team of nurse practitioners, social workers, and geriatric psychiatrists. This episode takes you on a heartfelt journey through the eyes of those on the frontline, offering a close-up on the clinical prowess of dementia care assistants who are redefining therapeutic engagement. Dr. Clevenger will also share the personal milestones that shaped her career in gerontological nursing and propelled her mission to craft programs that resonate not just with those they serve but ripple out to influence global health systems. Tune in for an exploration of a care model that's not just changing lives but also reshaping how we perceive and deliver memory care.
Integrated Memory Care Practice Overview
Speaker 1This is the Good Neighbor Podcast, the place where local businesses and neighbors come together. Here's your host, Stacey Poehler.
Speaker 2Hey everybody, I'm excited to be chatting with Dr Carolyn Clevenger. She is the founder and director of the Integrated Memory Care Practice, which is a joint initiative between Emory University and Emory Healthcare. Welcome, carolyn. Hi Stacey, thanks for having me. Yeah, we're excited to talk to you. Why don't you start off by kind of telling us about the clinic and you know all the different initiatives you guys have going on right now?
Speaker 3I'm glad to. I always say it's my favorite thing to talk about. So integrated memory care is our practice. We opened in 2015 and it is, at its core, three things. It is primary care, dementia, specialty care and caregiver services under one practice. We have both a clinic that we've operated since 2015, where we've been doing that primary care in a building called Brain Health, and then we now have a program we call our community program, which we bring out to senior living communities. We are now in, we have agreements with 21 senior living communities around the metropolitan Atlanta area.
Speaker 2Wow, wow, so kind of. One of the things you just mentioned was caregiver services. That seems a little bit different, you know, than what you would expect at a traditional you know primary care practice. Can you talk about you know what that is and how it impacts the patient and the level of care they're getting?
Speaker 3Yes, absolutely so. Caregiver services is a really core component for us, because when I was even throwing this idea around and talking to colleagues about this need for dementia care, or primary care that understands dementia, which is also fairly difficult to find some of the people I talked to were family caregivers. They were either caring for a spouse or an adult or a parent, and or they had been a caregiver and maybe their person had passed away and so they were talking to me in retrospect what they would have needed. The thing about dementia care there are a couple of unique things to dementia as a chronic condition that people live with for 10 years, typically from the time they have symptoms until end of life, and one of those unique things is that, because you have cognitive changes, you really need someone else supporting you. We have a rely supply dynamic, we call it. You used to rely on yourself for some things. If you're no longer able to rely on that, that caregiver supplies those things for you. So that caregiver might give you direct care. They might help you physically, they might provide emotional support. They're very likely coordinating your care or they might sort of manage finances for you, and so in health care even as a primary care if I was only doing primary care. You really can't do that well without engaging the caregiver as well. So when we talk about our practice, we have just as many services for patients as we have for caregivers, and you know. So when I talk about this model, people say, oh, so you're really there for the caregiver. It is absolutely for both. So caregiver services might look like this If you are establishing care with our practice, we've reviewed your medical records.
Speaker 3We only see people with a dementia diagnosis. That's an important thing to know, and the first visit is with the caregiver, only with the nurse practitioner. I want to hear how you all arrived at the diagnosis. It can be a winding path for so many families to even get that diagnosis. I want to hear what symptoms you're observing. Sometimes those symptoms are sensitive or can be embarrassing for your person, and so and sometimes you know, every family has different dynamics. Some people talk about things really openly and some people just don't have that kind of dialogue amongst themselves. So the thing about dementia people do things that are not like themselves. That might be things like peeing in the closet because they've mistaken it for a bathroom. It might be really being verbally inappropriate with people. There may have been episodes where there's been physical aggression hitting, biting, kicking. Those are not necessarily things we want to talk about if they're not currently happening. And certainly for the person with dementia, they may have no memory that any of those things occurred, certainly that they had done those things. And so that caregiver only visit is to tell me all of those things you want to talk about. We can do that separate in advance before I meet your person. It also lets me for the first visit when I meet the person, focus just on them and they can be the star of the visit. So that's one important piece.
Speaker 3Now, beyond that, we also have a clinical social worker on our team and she does the majority of the caregiver facing services. So she's a trained facilitator of a course called Savvy Caregiver. That's a national program that's been adapted for multiple settings and she teaches that class a couple of times a year. It's only for our patients and their caregivers. We run support groups both for early stage and for late stage. We also do individual psychotherapy. So if you're the caregiver, you're having your own. Many times emotional challenges in that caregiving role can create a lot of anxiety. It can worsen ongoing anxiety or depression for folks. They have a lot of strain and so we can do individual psychotherapy with our social worker, or she also does family psychotherapy. Sometimes family dynamics also really come to play when we're trying to make decisions and support this person who has dementia. So, absolutely, those caregiver services. You're not going to find that in most practices. It's just, and most practices are just not resourced and built the way that we are built.
Speaker 2Awesome. And then can you talk about the other side of it, the patient care and sort of what it means to integrate memory and primary care, and you know how you personalize that approach to each patient.
Speaker 3I'd be glad to. I'll give you a patient example, a few that came up when we were opening. So, for example, one of my first patients was coming into the dementia specialty practice and at Emory that is the cognitive neurology clinic. They are primarily the diagnostic center, so that's what their specialty is. So this gentleman had been diagnosed there. He had sort of a vascular dementia. Ultimately that was caused by having a tumor removed on his on his acoustic nerve. And when you're rooming somebody, regardless of what type of specialty you're seeing them for, everyone gets you their blood pressure, their temperature check, their heart rate, so forth. Right, and his blood pressure was up and it had been up over two visits at that point. So the neurologist says, appropriately, you know your blood pressure's been up. You should probably talk with your primary care about managing that, because if you have vascular dementia, blood pressure control can make a big difference in your symptoms and just overall health and well-being. Like you should have somebody take care of that, like somebody should look at this.
Speaker 3And the reality was he had a longstanding trust issue with healthcare. He only saw the cognitive neurology team. He had some things that were a bit off about him because of his dementia symptoms, and this is really extra true for people who don't have Alzheimer's dementia, by the way. So if you have Lewy body dementia, frontotemporal dementia or dementia from like chronic traumatic encephalopathy like our athletes, for example, alcoholic encephalopathy, something that's not like your common dementia syndrome due to Alzheimer's disease it can be really hard to find a practice that understands what that dementia is and how to communicate with you and your person. So in his case, he didn't have a good primary care relationship. In other cases people may have a primary care provider, maybe they've had a relationship for years, but it's always been the patient by themselves in the visit with that primary care provider and the caregiver is not in the visit. So, let's say, a new blood pressure medicine had been added at the last visit, but they told the person who's living with dementia to add this additional medication and they're not able to sort of keep up, especially if the medicine list has gotten lengthy. Um, so that's a great example for why he was one of our first patients because he had a trust relationship. He his sister was his caregiver. They wanted to be in a place where people understood, where he was going to have some disability, but also value and recognize his remaining abilities and engage his sister as needed. So sometimes she would be in the room, sometimes she would step out, while we might do like, for example, a physical exam in this case, and want to sister in there. And so in their case that blood pressure makes a big difference for your dementia symptoms.
Speaker 3But a neurologist is not typically going to manage your blood pressure or your diabetes or a urinary tract infection, which is a very common example, right? So, as dementia affects lots of older people, especially older women are more prone to urinary tract infections. In dementia the symptoms of a UTI are not fever and burning when you pee. They are more likely to be increased confusion, maybe lethargy. Sometimes you see sort of physical shifts where people shift their posture because they're uncomfortable, but they can't tell you exactly where or why they're uncomfortable.
Speaker 3And so do you go to primary care. That's a urinary tract infection, that's absolutely a primary care, or even a urogynecology sort of visit, but what you're displaying are neurological symptoms. So when you have one practice that understands that context, understands the typical trajectory, I know at what stage and what type of dementia someone will have to me. It hurts and this is where it hurts and how it hurts and when it started, which is all the things you need in primary care to come up with a diagnosis and a treatment plan. I know that because our whole practice specializes in people living with dementia and so we're quite familiar with their limitations, but again, also maximizing and respecting their remaining abilities.
Speaker 2Got it, Got it. And then can you kind of talk about the two different ways you're practicing now with the you know clinic in Atlanta, and then the community-based programs.
Speaker 3So our practice, as I mentioned, I was very much informed by family caregivers. It's also been supported through startup or seed funding by family caregivers who have made gifts to let us open these practices. That's important for this reason. So we had two donors who helped us open the clinic, both of them family caregivers, both spouses, and they told me, basically these are the things I needed when my spouse was going through this journey, and then I designed it within the realities of a healthcare system. Right, I know we've got limitations around the way Medicare reimburses for care, for example, and specialties and being in an academic medical center. Nonetheless, we've been wildly successful. So over the last nine years, so many, not just national recognitions and different awards and so forth, but even locally. I had a new patient come last week. I did the caregiver visit with her daughter and she said you know, I wasn't sure about you all. So I posted on a Facebook group if anybody had heard of integrated memory care, the clinic specifically, and she got 20 women all women, as it turned out telling her what a wonderful experience it had been, what a life-changing experience it had been for their families to have this kind of expert in their corner. So one of those original donors came back for a visit after we had been open just five years and, um, she said like wow, you did all the things you said you were going to do. That's kind of been the uh theme when we were out speaking. We were speaking at an event yesterday and our nurse practitioner in the community program was talking about what the community program does and there were two of our existing patients and families in the room and they said I just want you to know everything she's telling you about this practice is actually true. So she came back. She said you did everything. What else would you like to do? And I said well, the thing is we see people in our clinic about every three months and in day one through 89, a lot of other things are happening and in particular, if they're in a senior living community, so that might be independent assisted living memory care there's a whole other team there. They see them every day. They're not necessarily clinically trained or specialized like we are. I really would like to have an opportunity to influence and support them between day one and 89. And so we opened the community program.
Speaker 3Our nurse practitioners continue to see patients for visits. They do that in their home, their home being their senior living community. So their house calls component. That's not a unique thing. There are house calls programs around the metropolitan area, right, those house calls practices typically don't have a home base. Nurses and social workers as well, and as part of our practice we also have geriatric psychiatry nurse practitioners. So that means, if this person does begin to have more psychiatric symptoms which 85% of people with dementia at some point will have those psychiatric symptoms we're quite comfortable. But we have specialists on the team two of them who can help to advise or help to manage those symptoms with medication or other therapies.
Speaker 3And then I think the real crux and the specialty about this community program are our community health workers. We call them dementia care assistants. They're companions who work with our participants or patients every week. Some people want that service twice a week and they work one-on-one with them. They do different activities that might look to you or I like they're just having fun or like it's a friendly visit. In reality, there's a lot of science underlying what they do, so it might be games, puzzles, artwork, reminiscence, therapeutic talk, therapeutic listening, physical activity, supporting nutrition and hydration.
Speaker 3Ultimately, we're improving their quality of life. They've got this person. They do develop certainly a special relationship. It's like having your best friend visit every week. They know you, they know what you like and they understand your type of dementia and the stage that you're at. And then they're flexible enough to know that today's a good day, or maybe today's not a good day. Maybe today's a day where we sit quietly and there's some you know, there's some like therapeutic listening, maybe some handholding, maybe it's a day we're having a good day and we're going to play some go fish or we're going to do some scrapbooking together.
Speaker 3So, honestly, that has been one of the most powerful things Now clinically as a nurse practitioner myself. The other powerful thing is that companion is with this person every week. They're very well attuned to changes that may represent a medical change that the nurse practitioner needs to know about. So now we have eyes and ears on this person from a clinical team and we certainly partner with and we collaborate the team at the assisted living. But our team has a much more of a depth of expertise and knowledge about that dementia syndrome and so and they're clinically trained right. So you're going to see both, you know, hopefully good, solid residential care support and now you have a clinical expert team in your corner as well, so it's really been powerful to improve quality of life. It has also helped with our family caregivers peace of mind, and the goal is to keep them where they are for as long as they can be there. So we're trying to keep them as independent as possible for as long as possible.
Speaker 2Wow, that's amazing. Can you share with us a little bit about your background and journey and you know, and how memory care became something that you were really passionate about?
Transforming Dementia Care Delivery Models
Speaker 3became something that you were really passionate about. Well, I am a gerontological nurse practitioner by training, which does not exist anymore, which makes me feel a bit a bit old but maybe proud. So I always knew I only wanted to work with older adults. I actually did my master's at Emory and then, when I did my doctorate a few years later, five years later, I really just focused on people living with dementia, and at the time I was working with the Alzheimer's Association nationally around what we knew about the development of Alzheimer's disease specifically, but dementias broadly, how we might delay the onset of those symptoms and better support people, and I also got some training in developing and evaluating programs. And then I did my postdoctoral fellowship at the VA, and so our VA Center for Geriatrics is actually shared between Birmingham and Atlanta, so I went between the two for those two and a half years only on people living with dementia. At the time I was looking at their experience in the emergency department, which is another model of care not built for people with dementia. So that was really then much more of an interest in models of care delivery, right. So what I was seeing was the emergency department does very important work. Clearly you know, life-saving for sure, and sometimes people with dementia and without right people with dementia also have true emergencies. But is there a way to alter the way we deliver care there to improve their experience? That was that focus which really then led a few years later to okay, let's look at where people spend most of their time, which is in their homes and communities, and that care delivery model is also not meeting their need.
Speaker 3Dementia is not recognized, it doesn't get diagnosed. Families and people are spent 18 years excuse me, 18 months to three years trying to just get a diagnosis, to name what it is they're facing. And my goodness, it's hard to come up with a defense plan when you don't know what, who, you're facing. So just getting that diagnosis was challenging. And then, after the diagnosis, then what? And so, from the outpatient side, or primary care, I decided with a colleague of mine who was a specialist in neurology, the two of us put our heads together, talked to those family caregivers and said like, basically, let's just scrap this whole model and see what we can build from the ground up that is actually tailored for the patients we're trying to serve.
Speaker 3Now, outside of that, my own educational journey and creating this practice model, which, of course, I dreamed up in 2013 and then just started seeing patients in 2015.
Speaker 3So it's been over a decade at this point in the making. I've been a professor at Emory for 20 years and I know that it's 20 years I'm in my 21st because my daughter turned 21 and she was, you know, an infant in arms when I started teaching there. She's now an Emory student, funny enough, and I taught everything. I have taught every undergraduate, graduate students, doctoral students and my program of research has been not just about models of care like this, but programs that we develop for those family caregivers to give them the training that they need at the stage that they need it, and that's been very rewarding personally for me and it's just. It's really been a wonderful time honestly being at Emory so long and not moving to another institution. But, frankly, I've changed what I've done probably every four or five years in some significant way, and you always feel like you're doing important work and either supporting future nurses, which is good for the future nurse and for our communities, and then supporting this population of older patients particularly and those living with dementia and their caregivers.
Speaker 2Is there any research that you're doing? You know, in relation to this, that you're, you know, trying to develop some foundational principles and things that could, you know, help people doing this across the country, or even around the world?
Speaker 3Actually, there are certainly some design principles that we. We published them early on and now we're sort of honing those a bit more. But there is, for a variety of reasons, more interest in care models for people with dementia and I certainly have been contacted over the years by other health systems who you know, say we'd like to come and tour, we'd like to see what you're doing. We do now have a grant through the Johnny Hartford Foundation to try to package a little bit more of what we do to help other sites open a model like ours. We turned out there are six now comprehensive dementia care models across the US, so it's us and five others. None of us do exactly the same thing and our model is the only one that does full scope primary care, so that's both wonderful for patients and families.
Speaker 3I think other health systems get a little overwhelmed thinking about taking on the full care for a patient. This model, though, I should mention, is a nurse led model of care, meaning practice, the primary care providers. All of the visits are done with nurse practitioners. We have fantastic physician support on the team, but they don't do visits necessarily, because that's sort of the right training and I'd say it's the right tool for the job. In fact, all of the six models are nurse practitioner staffed, interestingly. So MPs, though, are trained a little differently, meaning we're trained on a population, so, for example, gerontology or adult gerontology, as opposed to being sort of more narrowed into, like I'm only trained for neurology or I'm specifically trained for primary care, so we have the ability to do both of those things, but outside of nurse practitioners. I think it can feel like well, how do I train people to do both? How do I create a model that does all of those things and offers caregiver services? But the reality is you're centered and you're designing for your patients. This is what people want. They don't want to be centered around the five different practices or services. They want things under one roof, and so, anyway, nonetheless, I think we're excited to talk about it. People hear it and they're like I just never really thought about putting things together that way, because our health systems aren't designed in this way, but we are definitely seeing some exciting innovation around it and we have great outcomes, so we are published.
Speaker 3Some of the things that are really important to us are the same things that are important to our families, so our patient and family experience, first of all, has always been through the roof. People feel very satisfied and supported. But things that Medicare cares about happen to also be good for our patients, like keeping them out of the emergency department and the hospital if they don't need to be there. Those can be dangerous places if you have dementia, even if the setting of a hospital corrects the thing that you went in for. We know this is not my research. This is other other research that you will create for other problems.
Speaker 3You fix one and you're going to create other problems because just the way hospital care is conducted, some of it's by necessity, some of it's kind of the way we've always done things, kind of the way we've always done things. So our practice of IMC, or integrated memory care, cuts your risk of a hospitalization in half, and that was over a three-year period when we matched our patients with similar patients in the health system. And even if you have a dementia specialist and a primary care provider, the fact that they're not in the same practice still increases your risk by 66% of being in the hospital over that three-year period. So co-locating services even if they're really good services, the fact that they're separate really makes a difference in hospitalization, and we use that because being hospitalized if you don't have to typically represents a failure of good primary care. That we found in our most recent studies, one of which is published one I'll just tell you is hot off the press, which is we also are really good at deprescribing those high-risk medications. So some of the things we know probably no one should be on, but certainly for someone with dementia it's hard to deprescribe if you didn't prescribe it, and when you have multiple prescribers in the picture it's sort of like that's somebody else's lane and I don't want to. When you have all of their care under one practitioner, we are really good at deprescribing.
Speaker 3And then the second, the last thing, is avoiding other inappropriate use. So it is possible, depending on your goals and priorities, to graduate from some things that people consider routine. So like a colonoscopy is not routine when you are 85 and have advanced dementia, we should not be ordering that. That does carry risk, and so not to say we absolutely wouldn't order it, but it's a reasonable. Let's have a real conversation about what's important to you, what risk you're willing to accept and what benefit we can expect from the test, rather than let's just immediately, off the cuff, order these things because I got a reminder from my medical record system. So I think all of that probably represents some good shared decision making and being accessible to our patients and families, which we have been business hours and after hours, weekends, nights, available all of our providers to our established patients seems to make a real difference.
Speaker 2Amazing, I guess. In conclusion, if someone out you know, in our audience is listening right now and they're a caregiver of someone with memory issues or married you know, married to someone, maybe that person's at home, maybe they're in a senior living situation, what can they do to get involved with your program and to start getting that really personalized, integrated care for their loved one?
Speaker 3So being accessible to people has been really important to us since we opened. So we've made it easy to contact us in two different ways. If you're interested in establishing care, so and the requirement to establish care is to have that dementia diagnosis so we will ask for medical records. If we don't have access to them in another way, we may ask for that, so you can call us directly. We do not use the Emory appointment line or the call center. We have a direct phone number and our staff answer that call. That number is 404-712-6929. And if you get a voicemail, that means that Sydney or Tierra is just talking to someone else. You're not going into a black hole. We will get to you, but that is our practice specifically.
Speaker 3The other way, we have two websites. I think the easiest one is nursingemoryedu. I find it very easy to Google Emory IMC or Emory Integrated Memory Care and that site comes up pretty quickly. The reason I specifically mentioned the website is that not only will you find more information about us, you can read news stories about caregivers and patients' experiences, see a video. There's also an online interest form.
Speaker 3So if you don't necessarily want to call us or business hours aren't good for you, you can fill an online interest form. So if you don't necessarily want to call us or business hours aren't good for you, you can fill out that interest form and just give us your name not necessarily the patient's name your name, the way you want to be contacted and when you'd like to be contacted, and we'll call you when it's convenient. There's also on that website the list of senior living communities where we are actively seeing patients or have recently signed agreements and will launch soon, One of which is Village Park Milton and Village Park Alpharetta, right there in your neck of the woods, and I believe we have starting soon excuse me Addington Place in Alpharetta as well. So we seem to have a number of communities in the neighborhood and would be delighted to support you and your families if that's part of your journey.
Speaker 2Yeah, and I did see also Arbor Terrace and Crabapple, which is right here and one of our favorite community partners, and it looks like St George and Roswell is launching soon and they're good friends of mine as well, so we're excited to have you guys in the neighborhood.
Speaker 3So yes, we have. We love Ar, love our Barteras crabapple as well. They're probably our second community. We've been friends for a long time and, yes, absolutely have several in Roswell, georgian Lakeside and the Solana East Cobb, so definitely in your neck of the woods and adding more every day.
Speaker 2Awesome, all right, well, thank you so much, carolyn. It was so good getting to know you and learning about your program.
Speaker 3Thank you so much for having me, yeah.
Speaker 1Thank you for listening to the Good Neighbor Podcast Milton Moore. To nominate your favorite local businesses to be featured on the show, go to gnpmiltoncom. That's gnpmiltoncom, or call 470-664-4930.