How to Include Dementia Caregivers with Fayron Epps, PhD, RN

Transcript: How to Include Dementia Caregivers with Fayron Epps, PhD, RN (Episode 99) 

You’re listening to From One Caregiver to Another. I’m your host, Kay Coughlin. I’m a business coach and an advocate for people with family caregiver responsibilities. I’m a family caregiver for my mother, too, and I just don’t believe that we caregivers have to put ourselves last. I believe that our families, government, and society in general owe us a lot more help than we usually get. And I’m here to help you learn to speak up for yourself so you can live your own life again.

Kay: Hi there. I am really glad that you joined me today for this wonderful conversation with Dr. Fayron Epps.

Before we get to the conversation, I wanted to read Dr. Epps’s bio to you. Fayron Epps, PhD, RN, is a nurse with over 20 years of experience and is currently serving as an assistant professor and the director of community and research engagement in the Office of Diversity, Equity and Inclusion at Emory University, Nell Hodgson, Woodruff School of Nursing. She’s a fellow in the American Academy of Nursing, Southern Gerontological Society and Gerontological Society of America.

Dr. Epps leads initiatives focused on developing and transitioning individuals from historically underrepresented groups into the nursing profession or faculty role. Dr. Epps also serves as the principal investigator for the Faith Village Research Lab and is the founder of the Alter Program, a nurse-led dementia friendly congregation. Her career goal as a nurse scholar is to promote quality of life for families affected by dementia through research, education, and service.

Her program of research involves evidenced-based practices for promoting quality of life for African Americans with dementia and their family caregivers and care partners. She is particularly interested in exploring the way religious activities and spiritual connectedness can promote meaningful engagement among persons with dementia across the country. Additionally, Dr. Epps also works to place culturally tailored, evidenced-based programs and interventions in the hands of those individuals who need them the most.

She is extraordinary. I can’t wait for you to listen to this interview and now we’ll get right to it.

Hi Fayron, I am just so excited that you can be here on the podcast with me today. Thank you so much for bringing your gracious and very exciting and groundbreaking work to the listeners of this podcast. Thank you.

Fayron: Oh, you’re welcome. But I do have to say thank you, Kay, just for the invitation and allowing me to share this platform with you so I can share the work that I’m doing in the community.

Kay: Can you please tell me a little bit about you? What you think we should know about you? And then how it is that you have really come to have this big heart and you’re willing to be so innovative on behalf of people with dementia and their family caregivers.

Fayron: When I got started in this, it was a challenge that one of my mentors, they told me I needed to narrow my interests. And I was just looking at family caregivers because family caregiving was so, so big in my family. Being able to take care of our elders. I mean, this is just what you do. And I always wanted just to help family caregivers period.

But once I started saying, okay, let me drill down what type of family caregiver and I got into the literature, I ran across these alarming statistics from the Alzheimer’s Association, their facts and figures report that they put out about every March. And I’ve seen that communities of color, specifically the African American community, the Latino community, were disproportionately impacted by Alzheimer’s disease and other forms of dementia. And that caught me by surprise. So that’s why I said alarming, because here I was a nurse, I was PhD prepared, I had worked in various clinical settings and I did not know.

And so, I educated myself and that’s when I started thinking, “oh, this family member probably had this. Oh, that family member probably had this. We just didn’t know what to call it, oh!” And at that time, I took it on as my personal mission, Kay, to say, you know what? I am going to be out here and spread dementia awareness in the community, specifically in the African American community. And so that’s where it all started. And that was back in 2013.

I remember when it actually all started, you know, for me to say, to get on this mission, my first research project was to find black families that can share with me their story, their journey, their experience. And that’s what I did in Louisiana. And come to find out, I was like, oh, this really does exist. There’s people that I worked with that were caring for someone with dementia. So again, it just showed how also in the black community, if this was going on, many people didn’t talk about it and it was very silent.

And you know, as I learned from these families, I also learned, you know what? We need to have more programs out here that they can access, that they can reach. I need to make sure that I can create spaces and places for them to come and get resources and support. Fast forward to 2023, I am here in Atlanta and trying to still carry out my mission that started back in 2013.

Kay: I love that, really, the roots of this for you was in breaking down the stigmas, breaking down the walls, creating safe places where not just the people with dementia, but also their family caregivers could come to get more information and feel welcome.

Fayron: One of the ways I’ve been trying to create these spaces is actually working in, to me, a major, major institution or a major place within the black community. Since I really focus in supporting black families, African American families, I have been able to partner with faith communities, churches, to create these spaces. I started off calling them dementia-friendly faith villages.

Our program now is called Alter. And it is to create these dementia-friendly congregations, these inclusive congregations, these welcoming congregations so people can feel like they’re, they belong. You know, when I was learning from the families, many of them stopped going to church, they felt the church turned their back on them. Right?

And I wanted to take that back to the faith leaders because, you know, I believe it was unintentional that this was occurring, but it wasn’t their purpose or their intention, it’s that they just didn’t know how dementia is totally different than many other chronic illnesses or diseases. And how these caregivers, their journey is slightly different. Their experience is slightly different.

And you know, I found when I started working with the faith leaders, clergy, ministry leaders, it was like eye opening for them. And you can see the light bulb go off. So, they welcome the resources, the education, they welcome the partnership with me and my team, the Alter program, to come and bring those resources.

And so, we try to work with the faith communities to not only do education and awareness, but also to have them develop or create supportive programs for the family caregiver and also for that person living with dementia.

And then we address worship. throughout my work, religion has been like a common thread, Kay. I am a woman of faith. I know how important it was for my family and as I do my research with other black families, it is so important to them. And so, any dementia outreach community program that I was going to do, I had to make sure that we address the spirituality piece, we address how families can still engage in religious practice, however they wanted to do that. Talk about the worship experience. Are there things that can be done different for these family caregivers that have a million things to do and cannot sit in a black church for three hours? Especially pre-pandemic. Now, since the pandemic, timeframes have changed.

But you know, there’s certain things that I wanted to bring to the leader’s attention so we can see. And for us not to forget just because someone has dementia, that they don’t love God, that they don’t want to worship. Yet we don’t need to continue to see how we can still feed their spirit.

And this happens. Because I had one family caregiver, she said, “oh yeah, I just don’t bring my mom to church anymore because what’s the point? There’s no need. She’s going to forget.” You know? And, and, and I’m like, no, no, no. If this was something that was so important to them as they was growing up, it is still important. Let’s find ways that we can still make that connection for them. and it just may look different. And what can faith communities do?

Kay: One of the things that I also hear from caregivers is that they wish the people they care for could be included in some of those regular daily activities because it is an opportunity to connect in ways that would feel familiar and loving. But they think that there might not be a point. Where they might not even ask because they might not think it would be available. And what you’ve done is you’ve really created this space where they don’t have to ask. They show up, and your Alter program is right there giving exactly what they need to touch their loved ones in very special ways.

I want to take a second here and let the listeners know how it was that you and I connected. I don’t talk a lot about my faith on this podcast. You know, my work is more secular than that. Certainly, anyone is welcome to contact me or listen to my podcast and be involved in all of my work. But I did reach out to you, I got your name from a mutual friend, because I am right now in the early stages of building a couple of different ministries to help caregivers at my own church here in central Ohio. I am so grateful to you for doing a lot of the footwork in advance, so that I can learn from you and bring your research and learn from your program and bring what you’ve learned, bring that to my own community. So, I just want to thank you for that so much. It’s so meaningful and your work is so beautiful.

Fayron: You’re welcome. Oh I just want to let you know Kay, you’re welcome. But you know, I thank you for reaching out and I, you know, I just want to take this time to also just thank the larger community and the families and the faith leaders that have entrusted their, just, they trust me. Ad I just appreciate that, trusting us, knowing that we have provided the resources for these faith communities to then support them.

Kay: And one of the things that I’ve picked up from family caregivers, and I’m a family caregiver myself, is I will say to someone, “well, how can I help you? What do you need?” And they say, “I don’t know. I am too tired. I don’t know.” And what you have done is you have created this for them so that they don’t have to figure it out so that they can just walk in and you’ve got a framework. You’re giving them some of what they need.

And what I found happens is when you get a little bit of what you need, it helps you put into words all of the other things that you need. So, you are inviting people in and saying, “It’s okay if you don’t know what you need, family caregiver, we’re here. We’re going to help you figure that out.” And it’s just, I cannot even tell you how welcoming and strengthening that… that feels to me like a big loving embrace. And I know that is something that family caregivers need when they are so exhausted that they cannot articulate what they actually need. Your work is totally amazing.

Now, let me ask you this question because I’m really, really curious. I know that everything that you do is evidence-based.

Fayron: We say evidence-informed.

Kay: You’ve also done research and you have reviewed a lot of the research that’s out there. It’s been one of your tools. What is some of the research that you’ve used or maybe that you’ve done that the rest of us can learn from what’s out there that we need to know about?

Fayron: So I do faith-based research and I do caregiver psychoeducation research and programs.

I can speak just briefly about the faith-based work, so I do as you, I think out the box, and I had a study for dementia friendly worship services, and I follow families. And then we did them online and I was able, and this this supported my work with Alter, actually seeing how the person is living with dementia.

And these caregivers responded to worship that was tailored for them. Where they had, where some persons living with dementia, their family reported that during the worship and right after, that their mother was more lucid. More present in the moment, you know, that she was able to correct the pastor because you know, we think pastors are always right, but they make mistakes sometimes and they do misquote scriptures and stuff, but she was able to, to catch it.

And her mother was between the moderate to late stage [of dementia]. And so this just touched her. So, and then she was able to have a conversation with her mom afterwards on their ride back home. So, it’s things like that that has picked up.

It is also things where caregivers never took that time to worship with the person that they’re supporting. And it was just a totally different feeling. Knowing that they can worship together and it was okay. They didn’t have to worry about anything else. So those are some things that I’ve picked up with the faith based and the dementia friendly worship service.

And then I also have a program called Faith-HAT, where I heard families, Kay, that said, Dr. Epps, I need you to meet us where we are. I know you said that church is good, but still, can you create… Because I’m just not ready, right? And I have to…yeah, we have to respect that. And so I created something called the Faith-HAT, where now I will bring these religious practices to them and give them like an outline on how to do things.

And this has been so powerful, Kay. So, so powerful. Just last week, a caregiver told me she did devotions every day by herself, but this intervention, this program encouraged her to start doing it with her mother. And after the devotions, it was around being grateful, and afterwards her mother turned to her and said, “I am grateful for you.”

She broke down by telling me this, what she said at that time, she broke down because her mother, you know, when you’re in a caregiver role, you just go, go, go, go, go. And many times, you don’t think that the person that you’re supporting and caring for really acknowledges and recognizes what you’re doing. Or they may not show appreciation. And just having her mother say that.

I had another spouse say that her husband, he became more kind. He was so aggressive, and then all of a sudden after we started doing these things together, these religious practices, “He’s really kind, he, he’s waiting on me to pray.” You know, so it’s, it’s things like that, that it’s powerful.

So many people, and I’m not sure if with your listeners, but a lot of people like to hear about numbers. Numbers. Well, how many people? But to me it’s about the stories. It is the stories, you know, but these are just powerful, powerful examples that I don’t think numbers could capture. I don’t think a, a survey that looks at anxiety or burden can capture, right? Because when you’re on this caregiving journey, there’s going to be a certain level burden. But it is these immediate responses that many times surveys do not capture that caregivers feel.

And now, okay, I’m going to move over to the psychoeducation piece I work with, and some of you all that are listening may be familiar with the Savvy Caregiving Education. It’s a face-to-face program. Also it has different spinoffs. It has Tele Savvy, which is a video conference, and then some online. And then we’ve created Tele Savvy at Home, and basically this is an education program to increase caregiver mastery or increase confidence in caregivers, if I can say it like that, right?

Because many times family caregivers, they’re just thrown in to this. , you know, they may just wake up and now they’re a, a caregiver.  And so no one gives background information. Like, okay, what is this disease? What’s this illness? How do you manage your day? What are these tools that you can start putting in place? And so, that’s the Savvy process and all the different spinoffs from the Savvy program is really based on that.

And then there is some other programs involved in, that focuses on navigating the healthcare system or just navigating systems. Because as family caregivers, we know it’s more than, sometimes, just what you’re doing at home to manage home life. You also gotta navigate all of these systems.

And so I’ve worked with my colleagues to develop and test the efficacy of these programs. From our preliminary results, we saw promising, promising outcomes. And that was related to increasing that mastery or that confidence level of caregivers. And then also possibly re reducing role strain and anxiety and burden. Because, and if you think about it, it makes a little sense because when you learn more about something, and you are learning how to navigate that, may decrease some of the burden that you may have. Not saying it gets rid of it, but just the level of it may be reduced.

Kay: I think what you’re doing for caregivers, by the way, is again, helping them to articulate what they don’t even know that they need to say. Because what happens when we become family caregivers? Many people who are in family caregiver situations overnight are expected to become experts in a lot of tasks and fields that they’ve never been exposed to, probably never had any interest in.

The other thing that happens as family caregivers, we take on these roles and all of a sudden we need to navigate the outside world. All of these spaces, you know, including churches. That’s such a great example where people have big hearts, but they don’t understand what we need. We don’t understand what we need, and then we go out into these public spaces with everybody else. You know, whether it’s the grocery store or the post office or whatever, who also don’t understand the spaces are not accessible. It can be a nightmare to navigate the systems out there and the places out there.

And that’s really the next question that I have for you. What are some of the things that you’ve learned that other institutions like grocery stores and libraries and restaurants and community centers, and even parks, what can they learn from what you’ve learned? About being a welcoming space for these caregiving families?

Fayron: Yeah, I think one of the biggest things is throw all the rules and protocols in the trash. Yeah, let’s just start there. Because even as a researcher, we operate all of the protocols and I think they’re good guides, but they’re not quote unquote the Bible, if we would like to say, or something that you just have to go by. You know, I use the word Bible cause that’s a term that I was raised with.

I think we have to realize, let’s really look at who are you serving. And each community, each one of those agencies, organizations, stores that you name, they serve different communities based on their geographic location. And that’s when we’re working with these, in churches, we want to know, who are you serving? Let’s look at who you’re serving, and then how can we meet their needs and not just meet their needs. We want to respond to their individual, and so in order to do that, you need to know what, what they, what they need.

And so we have a community advisory board. And I just think that is so critical, even for public health agencies, government agencies, to have that advisory board from the community that you are serving so you can hear what they need so you can respond and meet their needs.

The success of the work that we’ve done is because I’ve had, I have a community advisory board with church leaders, caregivers, persons living with dementia and community partners. They’re all part of it. So I can hear from all different angles of what’s going on, what’s needed, and then I can properly respond with them.

So I think that’s just really key moving forward and for us to make sure that we have these inclusive environments and, and even like if we think about the grocery store, Kay, I mean, I would love to know that there’s a grocery store that meets with the community.

Kay: Can you imagine? How amazing would that be?

Fayron: That would just be, just to hear what they need. Because I had one of my board members, she just is called the, is it the Caroline’s Cart? The Caroline’s Cart. So for her husband who has FTD [frontotemporal dementia], she can’t leave him at home. She can’t leave him in the car, but she needs to go grocery shopping. So it is a cart where she, he is able to sit in the front.

She petitioned for the grocery store to get it. And she made the case, you know, this and that. But just imagine if they had where they were meeting with the community once every quarter to hear what their needs were. Because she was able to express to the manager, “Hey, this is what’s going on. I need this.” And now we’re starting to see those carts pop up in the surrounding grocery stores and it just took that one person.

Kay: Just because she expressed herself and expressed her needs.

Fayron: At the grocery store. If she had that automatic platform to do that, imagine what other changes can probably happen and how quick that can happen. Because I will tell you that did not take a year to happen. Maybe just took a couple of months, but not a full year.

So imagine if we had that platform already set, where these entities were listening to the community. Oh, just, oh my goodness. All right. You

Kay: All right, you heard it her first, listeners. Go to your libraries, your community parks and recreations. Go to your grocery stores and say, “do you have an advisory board? For, you know, including the community, because I’d really like to talk to that board. I’d really like, I’ve got some ideas for that board.” Thank you for that, Fayron. That is, that’s an amazing idea. And I just want to say, it came from you. You folks heard it here first.

I love that you’re just never going to settle for whatever is happening right now. You’re always going to say, there’s more we can do.

Along those lines, I know that you have a survey tool that you use with your churches. Is that correct?

Fayron: Yes. So we have a pre-assessment tool when churches sign up, and that’s for us to get to who they’re serving. You know, we ask our faith communities to fill out this assessment and it’s also an eye-opener for them because we’re asking them questions. What is the age demographics? Your, the racial ethnic diversity within your congregation or your faith community?

Then we start asking them, do you have this in place? Such as, do you have large signage in place? Do you, are things handicap accessible? Because I’m finding out loud, there’s a lot of faith communities, some basic things are not in place. And so we’re asking them this. We’re asking, are you doing anything to support caregivers?

So that is our assessment. And so, and then once we do the assessment, we are actually…okay, this is something that we are going to be rolling out this summer, so y’all hang, hang on! It’s the called the Dementia Community Assessment. This was actually funded through the Alzheimer’s Association for us to develop a measure.

We’re using it in our faith communities, but our goal is for all communities to use it. Many times people were saying, yes, we’re going to become dementia-friendly and we want the dementia-friendly stamp, but there is no true measurement.

Well, you know, you’re saying you’re dementia friendly, but what is the community saying? And so we’re actually going to be rolling it out and trying to collect information from about 1600 parishioners that are part of the faith communities that I’m working with. To see, okay, what are they saying?

First of all, we’ll be doing like a short survey within this tool and it assesses their knowledge of programs, and then also see if they recognize the church doing these things. Because to me that’s really important, and that’s the piece that I know I was missing with my Alter program, that churches will come on board and they say they’re doing this and this and that, but I just don’t know if the community or the parishioners recognize it.

And so our goal is for this tool to be out there that people can give communities, before they implement something. And then once they implement it, then they can come back and have the community complete this survey and they can see the difference. And so, you know, I’m really, really interested in seeing if the parishioners recognize it’s not just the caregivers that we’ll be surveying. We’ll be surveying all parishioners, anyone that attends the worship.

Kay: I think this is so incredibly important, because I know from my previous line of work working with larger companies that if you can’t measure something, then it may have a limited lifespan. If you can’t prove, and it’s more than proving, it’s being able to improve the program to meet whatever the needs are of your community. It’s critical work. I actually get oddly excited about measurement tools, so I am geeking out over this a hundred percent on this end of the conversation, I cannot wait.

Fayron: That’s why you asked about the survey.

Kay: Because I love data and I am a data geek, and I love the fact that everything you do is, is backed with evidence and shaped with evidence, and that you’re always finding new ways to check in and see if what you’re doing. Is whatever it was you intended.

And I think what you are doing with your work is really inviting people in such a way that they don’t really have to have any skill either at asking for help or being able to receive help. You’re saying to them, show up. Just show up. We’re going to give you what you need today. And as you’re learning how to get this help from us, you’re also going to learn how to open yourself up to other opportunities.

I am so, so grateful to you for your work. I am beyond delighted that you were willing to come and talk with me today. Your work means so much to me. I am learning so much from it.

I’m going to put all of the links in the show notes, but before we go, I know Alter is spelled differently. So, if people are Googling you right now, Fayron, how is Alter spelled?

Fayron: A-l-t-e-r.

Kay: And what is the website for Alter?

Fayron: Alter dementia dot com.

Kay: Thank you very much. Because I know that people are going to do that and they’re not going to, you know, they don’t even want to wait for the show notes. They’re so excited. They’re going to go look you up. So they’ll be able to find you. And is there another website?

Fayron: If you go to Faith Village Research Lab, that’s when you can see more of the programs that we do, the research as well, and some of our community events and publications.

Kay: Thank you. A million times over. It’s been such an honor.

Fayron: Thank you so much Kay. And thank you all for listening in.

And I would like to just end it with, you know, for those that are listening, even as caregivers, we cannot be silent. And so I just encourage you to speak up, to share your story, share your journey with your family, your friends, your coworkers with policymakers. Just share it. That’s how you can receive the help, the support, but also that’s how we can have change, take place and receive more supportive programs begin to shape.  

Kay: You heard it here, folks, the expert is telling you learn to speak up and she’s even going to help you learn how to do it. Thank you, Fayron.

Fayron: Thank you.

Kay:

Thanks for being with me here today. You can find out more about all of this work at Facilitator On Fire dot net. That’s Facilitator On Fire dot net.

If you haven’t already joined my free Boundaries community, what’s stopping you? It is the place to explore setting boundaries without judgment or guilt. There, you’re going to find just real talk about how humans really work. And you can find that community at Facilitator On Fire dot net slash Boundaries. I can’t wait to be with you again in the next episode, From One Caregiver to Another.