This is the Whole Care Network. Music Helping you tell your story, one podcast at a time. Content presented in the following podcast is for information purposes only. Views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the Whole Care Network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the Whole Care Network. Music 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 of Emory Integrated Memory Care. We're talking about dementia caregiver focused research and her current can-do study. We're sharing four tips. Music Welcome. We are Sue Ryan and Nancy Treister. This podcast brings our years of experience in a variety of family caregiving roles to prepare you to navigate your caregiving journey. We're sharing our personal experiences, not medical advice. And because it's our passion to support you on your journey, we believe no topic is on limits. Let's get started. Music 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 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. In the dementia space, there are sort of a couple of targets of research that are happening. Of course, there are still many active studies for people who are, 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, honestly, 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. I think that's wonderful. It's so nice to know I was really completely clueless that there was actual research going on around helping family caregivers. It's really a very heartwarming. So let me tell you about the study we're currently recruiting for, which is CanDo. CanDo 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. And so the guide model that I know is coming up a little bit later, but that introduces the role formally of a 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. And we know that a family caregiver will often be that person's partner in that journey. And so the CanDo study and what we're studying is the CanDo course, I should say. The CanDo course hopes to prepare those families to be that partner in care navigation to the professional. Wonderful. So let's talk for just a second about what guide is. We're going to do, we'll publish a podcast on July 1st, where there's a big update coming to guide, but it's a Medicare program. So it's US specific. It's a Medicare program that really introduces the concept of Medicare, paying and supporting for resources, not just to help the person living with dementia, but also to their primary caregiver. And so that's a big part of what makes it different from what you've been used to today. So more to come on July 1st on that. And one of the things that was really eye-opening for both Nancy and me as we started having more conversations with you is, 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. 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 have 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 than 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 of understanding what might be available to you, how it's paid. Each of these have different eligibility requirements. Some of them are going to be different by state. Some of the rules are federal. You know, most people really only understood in the back and 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 Pine, 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 those 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 that. Absolutely. Yeah. All right. Well, that's a 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 in your caregiving journey is critical. It's important to know. All right. So one of the other things that we realize and that I know in the candid course, your, your 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. You know, when I think about telling families, what are the very, very most important things they can put in place for someone's health care finances is one of those pieces because finance 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 short up. The other thing that we know, if you are caring for supporting someone living with dementia is 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 work 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 and 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 of the pension. The thing that we think about in terms of dementia and finances is this so when people think about dementia or concerns about it, they always talk to me about memory issues. Oh, 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, so either they are making decisions about their finances that are not their best interest. They can't weigh sort of 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. And so really huge this distinction that you've made I think is really for many people this groundbreaking I mean it's something that there hasn't been consideration of, and it's an excellent piece to follow up with. 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 so an elder law firm and 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 we absolutely did we had episode 31 which is talking with elder law attorneys and we had to very senior and experienced elder law attorneys on that really gave the kind of insights you're talking about. It's perfect. I always recommend an elder law attorney when I talk with families later about things that they did early on their highlighted they would say consistently the best thing we did was get an elder law attorney. I would add my voice to that. Absolutely. So says the same thing. Yep. Good to know. The other thing about the attorney is not just that individual is their whole firm. They tend to be set up to support families in a more comprehensive way so 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. 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 and dementia communication and that firm and that attorney are going to be interested in talking to them about their values. Their priorities. 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 sort of how to manage those conversations in a productive way. Thank goodness. Actually that's just comforting because I usually when you're living taking care of someone is 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. 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. I do. 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 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 I am seeing someone it suggests 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. Right. But you know classes 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. And I've taken those and I completely validated. I also validate support groups. Yeah. So 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 the 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 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. So explain a little bit about what that means. Well before you do that I'll just validate Nancy if 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 being exposed to with anything else I had looked at. Okay. So let's talk I think evidence is key here. So you know you're you're now we're both evidence so we're both evidence. Yeah. So we are but in 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 caregivers a great example because it probably has the strongest evidence base of any of the caregiver education programs out there today. And 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 and the how to you have an opportunity to practice 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 we learn well when hearing or seeing someone else also practices 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 I 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 problems solving skills that I've learned in this class. That's huge. Yeah that is huge. So one other thing I know because I'd like to hear more about can do 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 a combination of Benjamin Rose and the family care alliance and everything in there has been proven. Absolutely research improvement. So that's awesome. All right tell us more about can do sure. So can do caregiver as navigator developing skills online trains family caregivers to navigate for systems. So navigation of health care financial systems legal systems and family systems. Sometimes the family needs a little navigating to. Oh indeed. It's an online course so people can access it from anywhere and it's self paced. So you have sort of a course topic a day or so we have 30 modules there 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. So for example one day a couple one of the spouses who's living with front of temporal dementia has decided to engage in a new business venture with someone he met at a bar. Lovely. All right. Yeah. So on that day we talk about financial exploitation what 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 state planners a 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 U.S. 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 on a rary 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 did it work and did it stick. And then that's awesome and so we will have in the show notes a link to this to how to participate in a study and there's also a press release on our website that has a link to how to participate in the study as well so if you're interested in participating you do have to be interviewed and such right you don't just automatically get in. So you actually can reach out to our team also can dash do at emory.edu and we'll be glad to get you the pre-screener to check your eligibility if you're not sure. Wonderful. Carolyn thank you so very much on behalf of caregivers everywhere. Thank you so much for them 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. Thanks for having me. Yeah, I appreciate it. So let's summarize. Today we met with Dr. Carolyn Clevenger and we talked about the fact that there even is caregiver research. Lots of it. Lots of it. It's an awesome thing. Good research. And it's 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 are 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 and knowing that at least those classes have been proven to be effective which is really important. And any of our podcast as you know, we have a matching blog. So this podcast, when you look at the podcast number, you can go out to our website at the caregivers journey dot org and find the blog that has the exact same number. And that's really where we almost what would you say so taking notes for you if you will. It really is a lot of people say they take notes on our podcast and we've said well, look the blog and we've got those right there for you. So, so check out the blog. 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. Join 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. Yes, we are. Thanks for your support.
