Additional Resources Mentioned
Takeaways
Tip 1: Understand Different Levels of Care Early
- Home-Based Care
- Community-Based Programs
- Residential Care Options
Key considerations:
- Each level has different eligibility requirements and payment structures
- Availability varies by state—some follow federal guidelines, others have state regulations
- People often wait until they desperately need memory care but try to access assisted living instead, creating unnecessary stress
Tip 2: Stay Ahead of Financial Challenges
- Protect your assets while maintaining oversight
- Understand the early warning signs
- Watch for judgment impairment issues
Tip 3: Leverage Legal Support from Elder Law Experts
- What sets elder law attorneys apart
- Specialized dementia expertise
- Long-term benefits
Tip 4: Take Evidence-Based Classes
- What makes evidence-based courses effective
- Measurable outcomes
- Recommended programs
- Savvy Caregiver course: Available face-to-face or online (in-person version includes support group benefits)
- “Best Programs for Caregivers” website: A collaboration between Benjamin Rose and Family Care Alliance featuring only research-proven programs
The CAN-DO Study: Training Caregivers as Navigators
Dr. Clevenger’s current research project, CAN-DO (Caregiver As Navigator Developing Skills Online), trains family caregivers to navigate four critical systems: healthcare, financial, legal, and family systems.
Course structure:
- Six-week online course following three families through different types of dementia
- Each day presents real-life scenarios with appropriate responses and preventive measures
- Videos from subject matter experts including elder law attorneys, investigators, estate planners, and healthcare providers
Study benefits:
- Participants receive honorariums for participation (up to $240 in gift cards)
- Families are followed for eight months to measure immediate and lasting benefits
- Open to U.S. residents primarily caring for someone with dementia not in hospice or skilled nursing care
Read More in This Blog here
Full Episode Transcript
Sue Ryan
When most of us think about dementia research, we think about studies on people living with dementia or pharmaceuticals. In this episode, Nancy and I are talking with Dr. Carolyn Clevenger. She’s with Emory Integrated Medi- In this episode, Nancy and I are talking with Dr. Carolyn Clevenger of Emory Integrated Memory Care. We’re talking about dementia caregiver focused research and her current CAN-DO study. We’re sharing four tips.
Nancy Treaster
First, let me introduce Carolyn to you just so you understand who she is, her background and where she’s coming from. Dr. Clevenger is a professor and a gerontological nurse practitioner. She’s a nationally recognized education leader in advanced practice nursing and in geriatrics and gerontology. She is the founder and director of the comprehensive dementia care model, integrated memory care, or what we finally call IMC. IMC represents an innovative practice that provides memory and primary care in a single integrated model for people living with dementia and their care partners. And it is an active participant in the Medicare Guide Model. We’ll talk a little bit more about that in a minute. In addition to talking to Carolyn today about her study and research in general around caregivers, we’re also this month interviewing several other nurse scientists about their research on dementia caregivers in honor of Alzheimer’s and Brain Awareness Month. So we look forward to learning more about multiple studies here.
So Carolyn, tell us a little bit more about research in general.
Carolyn Clevenger
Right. So in the dementia space, there are a couple of targets of research that are happening. Of course, there are still many active studies for people who have suspected or confirmed Alzheimer’s disease, other forms of dementia, imaging, diagnostics, blood tests, medications, of course. But we also study the other half, of that care team or the dyad, which is the family caregiver.
And many of the studies are intervention based. They might teach skills. They might teach communication strategies. They might just provide overall education to that family caregiver. And that’s what we do and can do.
Okay, so you talked about research that there is caregiver research. Now let me tell you about the study we’re currently recruiting for, which is CAN-DO. CAN-DO is an acronym like any good study should have. So that’s Caregiver As Navigator Developing skills Online. And care navigation has been sort of a hot topic. So the GUIDE model that I know is coming up a little bit later, but that introduces the role of dementia Care Navigator. That’s a professional, often a nurse, a social worker, could be community health worker, but that’s a specific skill set of a person on the care team who does this care navigation piece to support the family caregiver. And we know that a family caregiver will often be that person’s partner in that journey. And so,
the CAN-DO course hopes to prepare those families to partner in care navigation with the professional.
Nancy
Let’s talk for just a second about what GUIDE is. We’re going to publish a podcast on July 1st, where there’s a big update coming to Guide. So it’s US specific. It’s a Medicare program that introduces the concept of Medicare paying for supporting resources for the dementia family caregiver, not just to help the person living with dementia.
And so that’s a big part of what makes it different from what you’ve been used to today. More to come on July 1st on that.
Sue
And one of the things that was really eye-opening for both Nancy and me as we started having more conversations with you is how many studies there are that focus specifically on the caregiver. And what we’ve all learned is a family caregiver who was educated and confident and
knows what to do in their role, they’re really the absolute best medicine for the care receiver. I love that.
That leads us into tip one, which is understanding levels of care early.
Carolyn
So I think when people have that diagnosis of Alzheimer’s disease and other dementia, or at least their realization that that’s what they’re facing, they would expect when they interact with the medical system that they’ll primary care, maybe there’s a specialist like a neurologist or a memory clinic, or psychiatry who’s part of the team. But there are so many other people who are in this field who are not necessarily what we would call part of the medical or healthcare system, but they’re certainly involved in the care of this person. So that might be home care, which is different from home healthcare. Sometimes people go out of the home to something like a day program or they opt for residential care communities, which can be everything from independent apartments that only service people who are 55 and older to assisted living, memory care, or what people used to call the nursing home, or might be more appropriately called skilled nursing facilities. So there are all of these different levels and understanding what might be available to you, how it’s paid. Each of these have different eligibility requirements. Some of them are gonna be different by state. Some of the rules are federal.
You know, most people really only understood back in the day. People know you’ve got an office practice. Sometimes you have to go to the hospital and then there’s the nursing home. And if you’ve never personally had a family member in skilled nursing or a nursing home, your familiarity with that comment or that title or name might be from Dorothy and Sophia and the Golden Girls. Right. So, you know, Sophia broke out of Shady Pines, which was the home. And I always assumed that was the nursing home. But if I think about Sophia now at best you maybe was eligible for assisted living, but probably independent. They were obviously doing some shenanigans. So knowing there’s different levels of care and especially if you know them early, so maybe before your person’s actually ready, the biggest mistake these professionals in the field will tell you is that people wait until there’s a crisis or until when they really need memory care, but they want to get them in assisted living. And then there’s a whole tension about what level is appropriate for Absolutely.
Nancy
All right, well that’s good education. And to be honest, understanding what all your options are and leveraging the ones that are appropriate for where you are in your caregiving journey is critical. It’s important to know.
So one of the other things that we realize and that I know in the CANDID course you’re tackling is how to stay ahead of financial challenges. So that’s tip two. Let’s talk a little bit about what you’ve learned so far.
Carolyn
You know, when I think about telling families what are the very, very most important things they can put in place for someone’s healthcare, finances is one of those pieces because financial decisions today have big implications for later on in your dementia care journey. So much of your care needs will be self-pay and so you want to make sure those resources are shored up.
The other thing that we know, if you are caring for or supporting someone living with dementia, just to keep an eye on their finances, that doesn’t necessarily mean putting your name on the account. That’s actually something I learned as we worked with the experts as we built the CAN-DO course, because you then tie your assets to that person and assets determine eligibility for various services. So you want to keep an eye on, you want to have access to the financials, even the day to day bill pay. This doesn’t necessarily mean like the big ticket items like the retirement account or the pension.
The thing that we think about in terms of dementia and finances is this. When people think about dementia or concerns about it, they always talk to me about memory issues. I noticed this person has been more repetitive or they forget things that happened recently. But memory is a later symptom after judgment is impaired. So when someone is having impairment in judgment or executive function, they are making decisions about their finances that are not in their best interest.
They can’t weigh the pros and cons of a big decision like that or anticipate how those consequences will affect them later, or they just can’t execute the management of the day-to-day bill pay. And if it’s online bill pay, that complicates things sometimes even further for people who are not what we call digital natives. So this is not just unique to the patients that I’ve cared for. We know that people who are diagnosed with Alzheimer’s or another form of dementia, their credit scores decline in the five years before that diagnosis.
Sue
This is really huge. This distinction that you’ve made, think is really for many people, this groundbreaking. I it’s something that there hasn’t been consideration of and it’s an excellent piece to follow up with. Having Medicare and insurance is going to be enough. We’ve learned that for many of us, it’s just not. And understanding the finances is a big part of it. And another part of it is really leveraging legal support from experts. So that’s tip three.
Carolyn
We’ve talked about the financial side of it. Tip three gets into the fact that it’s extremely important to get support from legal experts as well, for sure. Absolutely. And financial and legal tend to go hand in hand, which is interesting because many times people interact with the legal system because they are making an estate plan or they’re setting up their will and that sort of thing. I would say in the case of dementia that you want someone on your legal team who is an elder law specialist an elder law firm, an elder law attorney is going to be the person who’s going to know best what you can anticipate, what might be in your journey ahead, how to sort of set those things up. Because once you have that diagnosis, now we’re not making sort of a general estate plan. We are really anticipating someone on an illness that has a known trajectory. And this team can anticipate what might be coming next.
I think you guys did an episode on this specifically, right?
Sue
We absolutely did. We had episode 31, which is talking with elder law attorneys. And we had two very senior and experienced elder law attorneys on it really gave the kind of insights you’re talking about.
Carolyn
I always recommend an elder law attorney. And when I talk with families later about things that they did early on, their highlight that they would say consistently, the best thing we did was get an elder law attorney.
The other thing about the attorney is not just that individual, it’s their whole firm. So they tend to be set up to support families in a more comprehensive way. These are also the firms that might either have on staff or be connected with care managers who can help families navigate if they need that care manager service. They tend to be better at interacting with your person. So, you know, your person’s living with dementia, they may or may not have awareness of their symptoms or how severe their symptoms are.
They might do some interesting things in terms of saying or doing unexpected things. So everyone from the person who answers the phone, who checks them in at the front desk is more trained and more sensitive in dementia communication. And that firm and that attorney are going to be interested in talking to them about their values, their priorities, and what’s important to them. Those are the things that tend to persist over time. They want to make sure that they’re meeting their needs and what matters most to them. They’re not necessarily going to need to confront them about their cognitive impairment, and they know how to manage those conversations in a productive way.
Nancy
That’s just comforting because usually when you’re taking care of someone who’s living with dementia, every time you sit down with a professional or someone, you think they don’t have any idea how to talk to this person. So, you know, that’s a huge difference, I think. But along those same lines, actually, is tip four, which is how to educate yourself. And part of educating yourself is taking classes and specifically evidence-based classes I think you recommend.
Carolyn
So first of all, you are educating yourself if you’re listening to this podcast, most likely, right? You’re someone who’s looking to learn more. None of us arrive at the role of being someone’s support person, their care partner, their caregiver, knowing these things naturally. These are things that you learn both the what and the how.
And a class I think is a great opportunity. It’s a little bit unique. It’s some education and it’s support. I think support groups are wonderful.
I will tell you, I had a wife of a patient, this is early days in our practice at IMC and someone had suggested a support group to her because we thought that would be meaningful and helpful of course. And she said to us, that’s not what I need. When I was a kid, I did not do Girl Scouts. In college, I was not in a sorority and I’m not doing a support group now. Okay. Well, already then we got that figured out.
But you know, class is like that good combination of education and there is some support that often comes with it because you’re taking it with a cohort of peers.
Nancy
And I’ve taken those and I completely validated them. I also validate support groups. Yeah, it’s good with both. I took the Savvy Caregiver course and you can take that face to face, which would be highly recommended if you can get out and do it because you get to be sort of in a support group while you’re in the course.
But if you can’t manage that, you can take it online. And I found that was the best course. And I’ve taken many courses really in investigating for Sue and I just to figure out what kind of training we would recommend to people. But it is probably the best course I found in terms of getting yourself mentally prepared for what’s coming and educating yourself on how to be prepared. And it’s an evidence-based course. Explain a little bit about what that means.
Sue
Before you do that, I’ll just validate Nancy, when I took it, one of the things that was really most impactful for me is it gave me answers to questions I didn’t know to ask and I wasn’t exposed to anything else I had looked at.
Carolyn
In the research world we would say we look at a whole population of folks and we compare the intervention to the placebo, right? So an evidence-based course is important and Savvy Caregiver is a great example because it probably has the strongest evidence base of any of the caregiver education programs out there today. So that means that the framework of the course is built in adult learning principles. So we understand foundationally, we provide information. There are specific activities in the how-to. You have an opportunity to practice, both supervised and unsupervised. You get feedback from a trained facilitator. You probably get feedback from the other folks in that class as well, which is kind of helpful. And you hear about their experiences, and there’s good evidence that says, learn well when hearing or seeing someone else also practice a skill because we observe it. So that means that the course then has been tested. It’s been in a randomized clinical trial. It has been tested against people who did not get the class and we measure things. So in the case of Savvy Caregiver, CAN-DO as well. We measure things like burden, strain, depression, anxiety. So all of those downsides of caregiving. We also measure whether it improves the positive aspects. So can we build up someone’s sense of mastery? Can we make them feel more confident in their role? Something called self-efficacy, which is basically just a sense of, got this.
I don’t know what’s coming at me today, but I feel confident that I can tackle it because I have these problem solving skills that I’ve learned in this class.
Nancy
One other note is there is a website called Best Programs for Caregivers that is only 100 % evidence-based programs. So you can go out there, just Google Best Programs for Caregivers. It’s the combination of Benjamin Rose and the Family Care Alliance. And everything in there has been proven. Research has been proven. So that’s awesome. All right. Tell us more about CAN-DO then.
Carolyn
So CAN-DO, Caregiver As Navigator, Developing skills Online, trains family caregivers to navigate four systems. So navigation of health care, financial systems, legal systems, and family systems. Sometimes the family needs a little navigating too. indeed. It’s an online course.
People can access it from anywhere and it’s self-paced. You have a topic a day or so. We have 30 modules. They’re about 10 or 15 minutes each. We expect that someone does that course five days a week. So you have two days to make up. If you miss a few days, it’s all fine. But over six weeks, you would complete this course. The course follows three families, who are in a different type of dementia, different family structure, and different things happen in their lives each day. And so you follow along with these families when something is happening. For example, one day a couple, one of the spouses who’s living with frontotemporal dementia, decided to engage in a new business venture with someone he met at a bar. Lovely. All right. Great. So on that day, we talk about financial exploitation. What methods to put in place to prevent those and how to react and what your recourse is if your person has been the victim of a scam or financial exploitation. It is content on the website. You interact with the course as well. And there are videos from subject matter experts. So there are elder law attorneys. There are people who investigate crimes against vulnerable elders, estate planners, health care providers, of course.
And then a couple of folks who specialize in family dynamics and family decision making. So how to navigate getting to a consensus when you disagree, for example. And so that’s the course overall. This is a part of a study. So we want to know, does this improve all of those pieces like mastery and confidence? Does it reduce burden and strain?
And so we enroll people in the study to be eligible. You would need to live in the US. Be caring primarily for someone living with dementia who is not in hospice, not in a skilled nursing facility or a nursing home. You don’t have to live with them. We will meet with you several times over the course of the study. And every time we meet with you and do data collection, that’s about an hour. People do receive an honorarium for their participation. So each time they do an interview, honorarium is $40 for each session. I think the maximum a caregiver would get would be about $240 in honorarium that’s given as a gift card. And they would be part of the study over eight months.
So everybody gets the intervention. You might have to wait, but you will get it eventually. And then we will follow you for a while because we want to know, does it work and does it stick? And then that’s awesome.
Nancy
And so we will have in the show notes a link to how to participate in the study. And there’s also a press release on our website that has a link to how to participate in the study as well. You are interviewed and such, right? You don’t just automatically get in.
Carolyn
So you actually can reach out to our team also, scholarblogs.emory.edu/CAN-DO. And we’ll be glad to get you the pre-screener to check your eligibility if you’re not sure.
Sue
Carolyn, thank you so very much on behalf of caregivers everywhere. I know how valuable this information is, and I appreciate what you and your team are doing for all of us in support of it. And thank you very much for investing your time with us today so we can be spreading the word even more for what you’re doing.
Carolyn
Thanks for having me. Yeah, I appreciate it.
Nancy
Let’s summarize. Today we met with Carolyn Clevenger and we talked about the fact that there even is caregiver research. Lots of it. It’s an awesome thing. And specifically about her CAN-DO study and some of the early things that they talk about that they’ve already learned in the CAN-DO study to help you for those of you who aren’t going to participate in the research at least get some advice from Carolyn and her team.
So thank you very much, we appreciate that. We covered four tips. The first tip was to understand the different levels of care early that are available to you. The second tip was to stay ahead of any financial challenges and some tips around how to do that. The third tip was to leverage legal support, preferably from an expert. And the fourth tip was to take an evidence-based class knowing that at least those classes have been proven to be effective, which is really important.
Now with any of our podcasts we have a matching blog. So when you look at the podcast number, you can go out to our website at the caregiversjourney.org and find the blog that has the exact same number. And that’s really where we’ve, what would you say, Sue, taken notes for you, if you will.
Sue
A lot of people say they take notes on our podcasts and we’ve said, well, look at the blog and we’ve got those right there for you. You don’t have to take notes. So check out the blog.
Nancy
Secondly, of course, if you like this podcast, please share it with others who you think would get some advantage out of the podcast. Please subscribe and follow this podcast. And we really appreciate the support that you’ve given us. If you have tips that you think would help caregivers, go to our Facebook page or Instagram page and please put those tips out there for other family caregivers.
Because as we always say, we’re all on this journey together.
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