Welcome to a fascinating episode of "The Future of Caregiving", where we discuss how Emory's Integrated Memory Clinic in Atlanta is transforming care for people with dementia and their care partners.
Dr. Carolyn Clevenger discusses her work in the field of gerontology and her role in leading the Integrated Memory Care Clinic (IMC). The IMC provides integrated memory, palliative, and primary care to people living with dementia and their care partners. Dr. Clevenger emphasizes the importance of educating and supporting family caregivers and highlights the need for well-coordinated care for people living with dementia. She also discusses the pros and cons of emerging Alzheimer's drugs and the need for alternative resources and support for those who may not benefit from these drugs. Dr. Clevenger calls for a demand for better care and the expansion of comprehensive models like the IMC.
Integrated Memory Care Clinics (IMCs) provide integrated memory, palliative, and primary care to people living with dementia and their care partners.
Family caregivers should educate themselves about dementia and seek support from reliable sources.
Caregivers should identify and utilize their support network to share responsibilities and provide assistance.
Emerging Alzheimer's drugs have limitations and may not be suitable for all patients, highlighting the need for alternative resources and support.
00:00 Introduction and Background
03:00 Integrated Memory Care Clinic
08:29 Supporting Family Caregivers
12:13 Common Questions from Patients and Families
16:20 Pros and Cons of Emerging Alzheimer's Drugs
23:50 Hope and Resources for Those Not Benefiting from Drugs
28:43 Demanding Better Care and the Future of Dementia Care
Full Episode Transcript:
And I should have asked this before I started recording, but Carolyn Clevenger. Is that the right way to say your name? Okay. Always awkward if I don't ask before we get started. Okay. Well, today I am super excited to be speaking with Dr. Carolyn Clevenger. Dr. Clevenger is a gerontological nurse practitioner.
Carolyn Clevenger (00:05.619)
It is, yes.
Carolyn Clevenger (00:09.27)
That's fair, that's fair.
She leads the Integrated Memory Care Clinic, which is a one-of-a-kind clinic model that provides integrated memory, palliative, and primary care to people living with dementia and their care partners. Dr. Clevenger, thank you so much for speaking with us.
Carolyn Clevenger (00:35.826)
Oh, thank you for having me. I think Harry Ayah is incredible. I'm honored to be part of the podcast.
Do you mind starting by telling us just a little bit about your work now and kind of your journey to getting there?
Carolyn Clevenger (00:50.774)
Sure. So I am a gerontological nurse practitioner, which is a little bit odd. Those don't, we don't make those anymore. I feel like I'm too young to say that about myself, but in the nurse practitioner space, you used to be able to specialize as a gerontology specialist. And I have all nursing degrees. We have so many second degree and second career nurses in the profession today, which is wonderful for us, but I am pretty boring. I have a...
Bachelors in nursing from West Virginia University and that's where I'm from originally Which was by the way at the time when I was going through college the second oldest state in the US So surrounded by grandparents and lots of older people in my youth and childhood And then did my master's at Emory's focusing on gerontology as I mentioned a couple of post-grad certificates and doctor of nursing practice Here in Georgia and then a special fellowship
in advanced geriatrics in the Department of Veterans Affairs. So I've always only wanted to work with older people. And when I got to my doctorate and my postdoc, really then only people living with dementia. I've been teaching for quite a while in the nurse educator space at Emory. I've actually been there 20 years somehow. And I was teaching small groups of students in the hospital and then larger courses, coordinated the gerontology track.
the entire advanced practice programs for a while and then was associate dean for partnerships. But today I focus my work in really three areas. The first is in developing and testing models of care for people living with dementia. My research, or more traditional research with clinical trials are with dementia family caregivers, developing programs to help them build mastery and confidence in their role as a caregiver. And then...
Because of some of my experiences and interests, I've been looking at the geriatric nurse practitioner workforce and what factors exist to keep them in the workforce and what are the biggest risks we have to losing more of people like me, nurse practitioners who want to just take care of older adults.
It is certainly important work and I can see how your passion for caring for older adults has developed. And I'm so glad that there are people like you out here providing this essential care. I'm interested in learning a little bit more about the integrated memory care clinic because I know that is something that you are incredibly passionate about and are working hard to make a reality and continue to serve patients. So do you mind telling us a little bit about what this is and what makes it such a unique care solution?
Carolyn Clevenger (03:27.57)
It is my pleasure always to talk about integrated memory care or IMC as we call it here at Emory. So IMC opened in 2015. It began as an idea between myself and another advanced practice nurse. So I've really historically been in geriatric primary care, in particular office-based clinics. So just like a primary care practice, but only treating older people with conditions common to aging. And my colleague was in the cognitive neurology clinic.
And the two of us were touching base and we worked together on several projects. And my lens was my patients who were living with dementia were finding themselves in the emergency department quite frequently. They had a number of challenges accessing care that really understood the dementia syndrome. And in fact, my postdoc focused on what do we do with them when they do come to the emergency department and we have this context of they also are living with dementia. My colleague was in cognitive neurology and she saw patients
who really had a very close connection with her and that team because they were people who understood the dementia, especially non-alzheimer's dementia types, things like phrenotemporal dementia, Lewy body disease. And so they would see people in their specialty clinic and they would say, you know, while we were rooming you today, your blood pressure was pretty high and you should talk to your primary care about that, right? Because your neurologist doesn't manage your blood pressure. We're very siloed in healthcare.
Carolyn Clevenger (04:53.958)
And so they would say things like, look, one, maybe the wife or the caregiver care partner might say, I would need to be involved in those visits and I get left out in the waiting room. They don't bring me back or don't engage me as part of the visit. Or they would say, my person doesn't trust them. They trust you because you seem to understand them and how to talk to them and how to manage them and how to support them best. And so can't you just manage my diabetes or...
diet or high blood pressure or thyroid, fill in whatever chronic condition or acute condition you want. So she and I talked and we kind of dreamed up this concept that it seemed like even for people in an amazing system like Emory Health Care, who are living with dementia, it was just hard to find one place where you could get all of that care. We ran that idea by some family caregivers that we had in our circle who said, look, we'd like to make things better. Some of them were currently caregivers and a few of them had been caregivers for someone who had passed away. And we said, okay.
it looks to us like things don't work for you. And they said, no, it does not. So we said, tell us what, if you could dream, how would you like your care to be organized? And they kind of gave us all of their wishlist. And then I designed around that for what is the reality of the US health system. So we opened in 2015, we are full scope primary care. So everything from those high blood pressures and diabetes, but also the rash that pops up and ear infection, ingrown toenail, whatever that might be.
Carolyn Clevenger (06:23.224)
and the specialty dementia care. So we do neuropsych testing, we make sure that we're clear about diagnosis, we advance care plan, we have specialists who can help with those behavioral symptoms that your previous primary care probably felt like fairly overwhelmed by. We've got social work to help teach classes for our caregivers. Those are evidence-based classes at no cost to our families. We do coaching for them, we can do psychotherapy for their caregivers.
Make sure, you know, everything from like your flu shot to you have a cold, to you're having agitation and Alzheimer's disease, all of that in one place. So in previous or everywhere else in the world, right? If you get the best care means you have multiple sites. So we can do all of the best care in one place for families. And that's what they told us that they want. We've been seeing patients, like I mentioned in clinics since 2015, so seven years.
This is a nurse practitioner led model supported by fantastic physicians. And we then opened another side to our practice just a year ago, and we expanded our model in senior living communities. So you might know those by assisted living or personal care homes. We are today active in four assisted living communities in the Atlanta area with agreements in six more, once I have my staffing up and ready to go. And we added to the team with an occupational therapist and...
individuals we train and call dementia care assistants who do not that direct care because they're in assisted living they have that service. This is really companion care that is cognitively stimulating that is supports mood activity, hydration, nutrition, maybe reminiscence, whatever that person needs one-on-one, however many times a week the family has opted for that service. So we are around 500 patients any given moment so that's how many are active today.
We're in growth mode with this new practice, and so we expect to double by 2025. So just excited as can be. We had back in 2015 when we opened five staff members, and today we are around staff. Staff member 21 starts later this month.
Wow, the IMC sounds like an incredible resource for families. I understand that it is incredibly stressful to navigate healthcare systems when you are caring for an aging loved one who is experiencing a new dementia diagnosis, especially as family members are often working full-time careers as well. So it's a lot to balance, and it's really incredible that
you sought out solutions that came directly from people experiencing these crises. So that's really awesome. And I love that you are incorporating families and support people into your care plan because building that community and making sure that everyone in these supportive roles is supported by their health care providers is so important. And so I'd be interested in hearing from you what two pieces of advice would be that you would have for family caregivers caring for a loved one.
with some form of dementia.
Carolyn Clevenger (09:24.146)
Absolutely. You know, one of our core values at the practice is co-producing or co-production. So we feel like we co-produced this model with families. We have a family advisory council that meets with us every month and families are part of the care team. And so when I think about pieces of advice that I would give those family members, first of all, you know, we're going to talk about all of the research that's happening right now in dementia, specifically Alzheimer's disease, in a few minutes. But to...
understand that the most powerful intervention I have today and really going forward is a well-educated and activated family care partner or caregiver. And so that means that you as a caregiver really want to educate yourself on this syndrome, on your person's underlying disease as much as possible with good credible sources. So whether that means you're in one of the classes like Stabbing Caregiver, whether you're listening to a good podcast.
Whether you have books that you find helpful that are written by again reliable sources Support groups run by the Alzheimer's Association or your aging disability resource center connect you as well all of us live in a county or zip code with chapters and Area agencies on aging that cover our space and so those so learning from other people who have gone through this But also just learning what you can from those good evidence based resources
And the second thing is that to understand as someone's care partner or caregiver, while you are responsible for making sure that things happen, that they have the care that they need, it doesn't necessarily mean that you're the one doing the care. And so I say that to remind people that as we teach in our classes, you want to identify your support network, your whole village of people who may support you in various ways. I hear lots of things about like the distant adult child who lives here.
person who lives here does all of the hands-on things, a person lives here, that's a great person for online bill pay, that's a great person for legal documents or things that don't require hands-on or maybe managing or coordinating services and appointments. It's a good reason to have the question ready, the things ready when somebody says, let me know what I can do and you say, here's my list, this is what I need. So while you are responsible for making sure, that doesn't necessarily mean that you're responsible for all of the doing.
Carolyn Clevenger (11:40.846)
that it doesn't all come to you for your direct time.
Yeah. Seeking out and utilizing support sources from people who understand, from medical professionals who understand, from other people who are there to support you as well is so important because as a caregiver, it's incredibly important that you're taking care of yourself and making sure that you are also cared for as you are providing this care for your loved one. What is one of the most common questions that you are asked by patients or by families that you see?
Carolyn Clevenger (12:13.262)
Probably one of the most common things is once we're clear about the diagnosis, so when people come to our practice they have a diagnosis now Getting to a diagnosis is not an easy feat in our health care system There are people who tell me about their years-long pursuit and journey and how they went to multiple specialists You know trying to figure out what is the thing that we're facing? That's really foundational right because it's hard to form a good defense if you don't know what you're what you're facing
So, but once they're clear about what it is, then the next question for us is usually what can we do? And what they often mean when they come to a clinic, and maybe especially because we're part of an academic medical center, we've got this robust research engine, right? What they often mean is what can we take, right? Like what kind of intervention is available as a medical treatment? And so we do a lot of talking about what people can do. It's not so much about what people can take though.
Absolutely. And so what is a question that you wish people asked you more than?
Carolyn Clevenger (13:16.798)
So I think then it is that second piece, that question of what can we do? As it turns out, really well coordinated care that can manage things like your chronic conditions, prevent future acute illnesses, right? So getting your pneumonia vaccine, for example, not only preventing pneumonia, but as it turns out, pneumonia is a trigger for heart attack and stroke in older people. So getting that good preventive care that's appropriate for you in your context, there are things we can do.
to slow decline. That's generally the goal, right? That's the goal actually of all of our medication treatments including our newest treatments are really about delaying progression. And many things that we do day to day are helpful for that. So I talked to people about managing dementia symptoms. And that does first begin with good caregiver training, right? How to like, you know, understand what symptom is happening and how to respond and support it or support that person experiencing the symptom.
It may involve medications as well, but this is a both and scenario, not either or. Managing those chronic conditions, it really matters that your brain gets a sufficient amount of well oxygenated and not overly inflamed blood flow. And so things like good sleep hygiene, quality sleep in sufficient amounts and enough of your deep and REM stages, it means...
eat good whole foods without too many additives and preservatives as much as you can clear those from your diet. It means aerobic exercise where your heart rate gets up. It means blood pressure that's at goal. It means diabetes that's at goal. It means a youth thyroid state, all of those things. It also means that we're going to look at things like the physical environment. So routine and structure are tremendously important for all of us.
If you're like an intense student and you're overwhelmed by your class schedule, do you know what? Making fewer decisions because your environment is set up to provide you with a supportive routine and structure helps you too. And so when you have brain disease, even more important. So all of those things are things that we can do. Again, delaying disease progression is important, but also it just improves quality of life for this person. This disease is a long, it's a long syndrome of dementia from the time you have symptoms until...
Carolyn Clevenger (15:34.858)
end of life, this is a decade. And so you want to live well while you're experiencing that disease and that is possible. So focusing on quality of life, this is sort of the palliative care lens that we bring in IMC, that we're gonna be really focused on quality of life, what adds to it and doesn't detract. And that we're gonna, and part of that is managing those symptoms really carefully and just anticipating what might happen and then kind of considering how we'll manage things as they come up.
Yeah, healthcare is and should be so much more than just medications that are prescribed. It is about a lifestyle. It is about so much more. And based on what you just said, I kind of have a feeling of what your thoughts might be on this topic specifically. But to ask more bluntly.
A lot of attention, a lot of funding and resources have been allocated to drug development lately, and a lot of news has been focused on emerging drugs to slow the progression of Alzheimer's. Can you walk our listeners through with the mindset of they are family members caring for a loved one with Alzheimer's? What are some of the pros and cons of what this emergence?
looks like, what are some questions they should be asking about these drugs, and where's our room for shifting our focus, which you've spoken on a bit already.
Carolyn Clevenger (16:52.754)
Yeah, you know, I think that this world of drug development, I mean, some of that sort of is influenced by just the way health care structured in the US as a business and where we tend to invest our resources. And so, you know, I think drug development is a positive thing. It's not negative, right? So there are a lot of values from that. And frankly, when we develop new drugs in any disease state, so in the state of Alzheimer's disease, it
It raises awareness across the board about people who are living with this, people who are caring for someone living with this disease. And ideally, I think that spotlight, that attention raises our awareness and support for people across the spectrum. That said, what we have to think about is we sort of have a mismatch of the population and of the population for whom the drug development is really targeted and the people for whom
the drug development communications are targeted. So it's an interesting space to be in today. So with our newest FDA approved drugs, so we have an FDA approved full approval for a drug called Lecanumab or Lecanb, and accelerated approval for another drug called Ajecanumab or Ajehelm. And I anticipate we'll start to see another coming in the next few months as more phase three trial data are released.
And these drugs are specifically targeted toward a protein called amyloid, which is the first protein that builds in the brain of people with Alzheimer's disease. In fact, we would now say the criteria for diagnosing Alzheimer's disease begins with, does this person have amyloid at a level that's above what they should have for their age and gender? Unfortunately, we've thought about Alzheimer's disease as people who have cognitive symptoms like memory loss.
And the difference between someone who has amyloid, nothing else, that's the only thing that when we sit, let's assume that is the first development of Alzheimer's disease. The space between amyloid only and memory loss is at least 10 years. And so drug development for these drugs, and these are monoclonal antibodies, they're infusions that are administered on every few weeks, every month basis.
Carolyn Clevenger (19:14.678)
First of all, you can't take an infusion to remove amyloid unless we know you have amyloid. And so many people today who have that memory loss symptom, that was the first thing that brought them to clinic, and that's what led to their diagnosis of Alzheimer's disease. Most of them don't have an amyloid test that says definitively they have amyloid, which now makes us say, we don't exactly know to call you Alzheimer's disease if we don't know that you have amyloid and this other protein, which is called TAP.
And so in the drug development, I think where we're really targeting are people who have these two proteins. The test to determine that that's considered gold standard, you have two options. One is a lumbar puncture, people call spinal tap. It's fairly invasive. It's not as bad as you're thinking. I think people have terrible like images when we say spinal tap. It really is quite fast. The headache that people get is pretty rare at this point in centers where they do these frequently.
They're only done in specialized centers. I mean, both of these tests are, but it's covered by insurance. It's gold standard. We would say definitively, this person has Alzheimer's disease, if that's positive. You also can have a special scan positive. So it's a PET scan that specifically uses a tracer that lights up these proteins in the brain. So it's a little dye that we inject, and that's not covered by most insurance, although there's some changes in making determinations by Medicare coverage because of, you know, you have to know that before you can get the drug.
And so that's sort of a moving target, but that really, it looks like, and even our clinical trial data that's coming out, and what we have all kind of understood is people who only have protein buildup and no symptoms yet are really the target for those medicines. Unfortunately, those people are walking around having no idea that they have those proteins building. And that's a big challenge. Now, there are blood tests that are FDA approved today, but they're not considered gold standard.
If you have a positive blood test, you'd still need to go get one of these other two, the lumbar puncture or the PET scan. But they are FDA approved and they're getting better. And I anticipate really in a few years that that's going to be probably the first way that we look at people maybe in their, you know, as young as their 40s or 50s to say that. Now, people who've been living with this build for a long time, who have cognitive symptoms, who have what we call functional decline, meaning they need help paying their bills, remembering medicines.
Carolyn Clevenger (21:36.658)
driving, and maybe now need help getting dressed or toileting or walking. These people have been living with this disease for some time. And in these individuals who are most of our population that we would call Alzheimer's today, they would not be appropriate for these treatments. And in fact, in at least one of the phase three trial data from one of the amyloid targeted therapies, that's what that group's called, 80% of people who were screened for the study
to take this medicine. So these are people who thought they had Alzheimer's disease. A clinician has referred them and they thought they would be appropriate for the trial. They screened, they were excluded because either they did not have amyloid, did not have TAL, or they were too advanced. It was too late. And that's in like a study population, which is like as good as it will get, right? So I would say in my clinic today, of my population, maybe 3% would be appropriate for this. So.
There are also fields of research that are about models of care, right? Like IMC, when we test that, we say, what does it do for disease progression? What does it do for quality of life? What does it do for avoiding crises that maybe are avoidable, like hospitalizations? And there's research in caregiver support and education and training to make, to better equip them for their role. And so there are also some investments, not so much in, um, some big news has come out this week.
in how we implement those models because we have enough research to say we need to do something to help families. So in that way, all of the attention on Alzheimer's has probably led to more support for people living with disease, but it really is two different populations.
Wow. It is exciting that more attention is being brought to this disease. It is disheartening to know that it's ultimately not effective for the majority of patients living with Alzheimer's disease. So where are there some aspects of hope for these people who may not benefit from these drugs specifically? Are there any emerging solutions? And IMC is absolutely one of them. What are some other types of resources out there
can provide a little bit of light for people with these diagnoses.
Carolyn Clevenger (23:54.122)
So I will say, and just to remind people that, let me just add this. So with the new drug treatments, the effectiveness is that it delays progression by four or five months. So it is not a cure, unfortunately. It does remove amyloid very well. In some cases, some of these also remove some of the tau, but it is not a cure. And so it is, and there are...
significant risks that come with it. And then there are some later effects where it looks like people who've gotten that treatment then later may have accelerated decline, but later in the disease. And so those individuals will follow potentially a different disease progression or a trajectory. If I was charting their abilities over time, the beginning and end may look similar. We don't know yet. And then just the process may look different.
for people for whom they're not appropriate for these drugs. Maybe they don't have Alzheimer's disease. Maybe they may have vascular dementia, they may have frontotemporal dementia, you know, Lewy body, they may have something, a different cause. So that medicine wouldn't be appropriate or you know, things are just, they've lost too many brain cells at this point to then take that type of a risk. So in those individuals, it is still entirely possible to live, have a good quality of life and to live well with this disease.
And so then we focus on how do we support that because it's not accidental when that happens, right? It does take a supportive care model like IMC. And so this week is kind of a, what timing, I think for us to have this podcast recording because we've recently heard from the Innovation Center at the Centers for Medicare and Medicaid Services on a new program initiative that they will be piloting for the next eight years called the Guide Model. And that's Guiding Improved Dementia Experience.
And so they will fund practices like IMC and like others, and also practices that don't do anything like we do at IMC, but would like to, so that they can stand up a model close to ours with sort of a required package of services for patients, so that they can have a practice where they get not just that good assessment from the beginning, but reassessment, because things change over time, and you should revisit where we are today and make plans accordingly.
Carolyn Clevenger (26:17.11)
that they get care navigators, that they have a written care plan, that they have access to 24-7 support, that caregivers get education and training, and that they have access to respite for people in later stages like moderate and severe. We've never had respite coverage. That would include adult day programs during the day. It includes overnight stays and eligible facilities. So that's managed by a participating site. We'll see who signs up to be a participating site. That would begin in July, 2024.
And I mentioned two levels. So practices like ours would be a practice that is we're ready to provide these services today. We already provide these services today. Actually, IMC interestingly provides literally every service on the list already. Other sites can contract with partner organizations, but we do it today. So we're ready to go. But other sites who maybe like safety net systems especially or practices that serve historically underserved groups.
Carolyn Clevenger (27:13.538)
can also enter into a program where they have a year to prepare and stand up a practice like that. And I will tell you, one of the things that I like to do, you can tell I'm passionate about this, is to help practices do that, to help practices get ready and stand these models up. It pays the practice a little bit differently, so it makes it more financially sustainable for a practice to stand this up. And then one last piece I'll just mention for patients and families who might be hearing this is that you will only be eligible to receive these benefits, especially the respite.
if you're Medicare, traditional Medicare. So it would not cover someone in a Medicare Advantage plan. But this is a demonstration pilot for quite some time, eight years. And so that is quite an investment that we are excited to see. So, you know, what we do at IMC, we like to say it's not, I mean, it's important, but it's not impossible. You know, I didn't come up with a new drug. I didn't create a whole new, like, we pulled services together that exist and then we do them really well and co-located them.
intentionally. So you know people can live well. I think there are excellent services out there like ours and the other comprehensive models and we have been thoughtful and intentional about building this and all of us are looking to replicate these practices in other places across the country.
That is certainly great to hear. And all of this information has been incredibly helpful. Thank you so much for sharing. To leave us off, do you have one final thought that you would like to share with our listeners?
Carolyn Clevenger (28:43.746)
Well, let's see. So I think one of the biggest things that I hope people sort of expect and demand, right, of our healthcare system is that we have good evidence that models like IMC, like some of the other comprehensive models exist. And honestly, I've been hoping for a long time since I was in my nurse practitioner program that our aging boomers would demand better care. And so
One of the ways that we do that is that we expect that more models like this do see spread across the US. And so I think, especially with new reimbursement structures, I think the excuses for not providing best possible care for people living with dementia and their family caregivers are really diminishing. And so, you know, I'm here for it. IMC exists, you know, we best serve dissatisfied, people who are dissatisfied with the current health system.
And so let's take that together and improve the health system. And as a clinician and the nurse practitioners, I will say on their behalf, we're here with you to co-produce those.
Thank you so much, Dr. Clevenger.