Dementia Education for African American Families

Interview with Fayron Epps, PhD, RN

(Podcast #045)


Dr. Fayron Epps 0:00
Me evaluating that trust starts within myself, because I am from the African American community. And so I just have to reflect with myself. How does this trust, look, you know, how can I present this material so others can get into understand it and know that I'm being honest with them, and I'm bringing them the facts. And so before every education or before I do anything, I sit down, and I just have to reflect, because I know how I feel about certain things. And I know even though I am a nurse, I know how I feel about healthcare professionals. And when I go to the doctor, how I know how I'm treated, despite what my educational background is, despite my profession, I know how I'm treated. And I think I bring that into my education. So we can have those conversations, and I opened it up, you know, and I, most of the time, pre COVID, we conducted the education at churches, because this was the safe place, this is the haven. And so we allow those conversations that happen. And so when those questions did rise, and someone asks about how can we trust this information, it was me bringing them the facts. You know, and me being honest with them, letting them know that I had to work through the mistress myself in order for me to bring it to you. And you know, I think that they recognize that and then also getting it from the faith leader, as well. Having them stand up and speak about it also assisted with, with any distress or mistrust that they may have with the medical community. And just recently, one of the pastors. For one of our promotional videos, she said that she said that the mistrust still exists. But we as pastors, we have to be educated in all these areas because they trust us and they're going to come to us before they go to a physician.

Dr. Regina Koepp  0:44  
I'm Dr. Regina Koepp. I'm a board certified clinical psychologist and I specialize with older adults and families. I created the psychology of aging podcast to answer some of the most common questions I get about aging, questions about mental health and wellness, changes in the brain like with dementia, relationships, and sex, caregiving, and even end of life. Like I say in my therapy group, no topic is off topic. We just have to have a healthy way of talking about it. So if you're an older adult, or caring for one, you're in the right place. Let's get started.

Dr. Regina Koepp 2:55
February is African American History Month. In this past year, we have been face to face with horrific acts of racial injustice and health disparities with the covid 19 pandemic. We know that COVID-19 has disproportionately affected black and Latin-x communities. And we learned as a society that we cannot turn our back on systemic racism and health disparities that disproportionately affect black communities. Today, I want to draw our attention to an important health disparity disproportionately affecting African American seniors. That health disparity is dementia. African Americans are two to three times more likely than white Americans to have a dementia disorder, but are less likely to be informed and educated about it. Today's guest has something to say and do about this.  


About Today's Guest

Today I interview Dr. Fayron Epps. Dr. Epps is a nurse with 20 years of experience and is currently serving as an assistant professor at Emory University's Nell Hodgson Woodruff School of Nursing. Dr. Epps currently serves on the board of directors for Southern gerontological society Alzheimer's Association, Georgia chapter and Meals on Wheels Atlanta. Her research involves evidence based practice for promoting quality of life for African Americans with dementia and their family caregivers. Dr. Epps works with faith based communities and other community organizations to spread dementia awareness and is currently working on a project with faith communities to develop dementia friendly faith villages to support African American families living with dementia. I am so excited to interview Dr. Epps today. Let's jump into the interview. Dr. Fayron Epps thank you so much for joining me on the psychology of aging podcast. Can you share a little bit about who you are? Tell us your story.


Dr. Fayron Epps 4:59
So Who am I? So I am a Assistant Professor of Nursing at Emory University. So that's my my formal title. I been at Emory for a year and a half in my focus. And my research primarily is in the African American community. And it's working with dementia families and making sure that they have the quality of life as they go through this journey. And I also partner with churches. So churches can recognize that they are a key member of the care partner team for these families. So that's formally who I am what I'm doing. I've been in Atlanta area for about four, four and a half years. So I moved from the Greater New Orleans area. And so that's where I'm from. That's where a lot of my work started. And I'm like, let's see what else Regina, I'm trying to see what...

Dr. Regina Koepp 5:59
Tell me. How did you get interested in working with African American families living with dementia.

Dr. Fayron Epps 6:04
So throughout all high school, college, I've always been my work lean more toward older adults. Just being with my grandmother, I say just started right there. Just being where her and all of my papers, my thesis reports, everything was for older adults, I worked in the nursing home. So I just love and are respected with older adults brought to the table they experienced that they were able to share, I feel that it was important for me growing up to hear those stories. So I can understand where I need to go. And then at the same time, I understood what are those areas that I can help others with. So more particularly as it relates to how I got with dementia. For my postdoc training, I was informed, I was just looking at older adults, family caregiving very broad, and they say, hey, Ron, that's really broad. So they have a lot of things going on, you need to, you know, narrow it down. And so I started going into the literature, and I ran across all summer cities, and how it disproportionately impacts the African American community and communities of color. And I just never heard that before. And here, I had my PhD. And this was my first time hearing that all comments disease, dementia impacts the black community at a level that yes, communities. Yes, correct. And so when I brought it to my family, they were like, That's not true. That's, that's for white folks. We don't get that. And so I started reading more and more and looking at the signs and symptoms. And I was like, wait, this is true. Because I know some people, my family that has some of these signs and symptoms, but we didn't say anything like, you know, because it was never recognized that this happens in our community. And so that right there is what said, you know, what, my goal now is to educate my community. So we all know, this is what's going on. And there's some things that we can put in place, you know, to help the families through this journey. And so that's how I got started with dementia families, and especially in the African American community.


Why is education about dementia and dementia care important?

Dr. Regina Koepp 8:24
And because what's the downside, then? Dr. Epps if we if if African American communities don't have the information that Alzheimer's disease disproportionately affects their community, then then what's the downside, then if folks aren't getting information about Alzheimer's disease, and if folks aren't getting access to resources? what's what's the downside of that?

Dr. Fayron Epps 8:50
Well, I thank you several downsides. And so you know, we already know what the lack of education and lack of understanding, then you have, poor quality of life you're going to have. So if you have your grandmother that's going through this and you don't understand it, you yourself will get frustrated, you will get mad, some abuse might come out of that situation, right, because you don't understand it, you might end up locking up your grandmother, your grandfather, all kinds of things because you don't understand it, then there might be some isolation for that person that is actually going through this because now you don't want to bring them out. You don't want to bring them back to church. You don't want to do these things because you're embarrassed and you have no clue what's going on. No one, you don't feel comfortable bringing it up to anyone because you don't think anyone else understands it, as well. And so those are the things that I have actually seen in the community, because there's that lack of education and I just published an article when we were going into the churches educating about dementia, and we did before and after. And before it was so negative curse words were us tears, it was just so much frustration you can see. And then after the education, what you seen was understanding patience, hope, came out of the exercise that we did. So no education plays a big part in trying to support those living with dementia.

Dr. Regina Koepp 10:26
Yes, and just and the access to services and resources and medication, if identified early on, in terms of slowing down the progress of the illness.

Dr. Fayron Epps 10:36
Yeah, that is a good point we do when I did community events, pre COVID-19, we were face to face, I conducted memory screenings. And that was one of the things that we wanted to really get out in the community. Early detection was key, as it relates to getting access to the medicines and some of the other resources. So I appreciate you bringing that up. But guess what, no one wants to come and get a memory screen. You know, even though it doesn't cost you anything, you know, and so now we need to deal with that. Because they don't want to know, I've received like, Oh, I know, I have a little memory issues. I don't need you to tell me, okay. Or I don't want to know I'm here for my mom, I'm not here for myself. This is what's in I'm like, so you know, it was so hard to get individuals to come to a private room to do the screening. It was very, very challenging.


What has contributed to barriers to access to education and resources about dementia care for African American folks?

Dr. Regina Koepp 11:34
I bet. Yeah. And so what do you see are some of the barriers to education?

Dr. Fayron Epps 11:43
I'm not sure when you say barriers to education...

Dr. Regina Koepp 11:48
What do you suppose has created this separation, between access to this education about dementia and dementia resources for the African American community?

Dr. Fayron Epps 12:01
Because I still think a lot of folks in the community don't think it's a black people can get this. And so if it doesn't personally impact them, they want to attend. And so it's, that's what I've been seeing is, if they don't know anyone at work, or have heard of anything, it's been a really challenge to get them to even come to the events. And even you know, during the pandemic, a lot of things are online, but still, and we know, if this doesn't, I don't see the benefit of this. I'm not gonna log in, you know, even though now a lot of people do have access to this education. But if they do not see the direct benefit, then they're not going to log in. And, you know, they don't understand how it's really impacting their community, then they're not going to be part of the education or the awareness. So I think, me as a nurse scientists, and my colleagues and healthcare professionals, we just need to be proactive. And we need to keep bringing it to the forefront and make sure it's involved in all of our conversations. So even when I'm not working, well, I guess I am working, because I'm bringing it up. Because even in my everyday conversations with my family, my friends, my colleagues, I bring it up. No, because I think that's really important. Because if it does not directly impact them now. It's going to impact them in three to five years, some in some form or fashion. Yeah.


The importance of African American churches

Dr. Regina Koepp 13:32
You mentioned a few times about African American churches, and that you're partnering with African American churches to sort of disseminate education and awareness to memory screens, provide access to information, why African American churches, can you talk about the importance there.

Dr. Fayron Epps 13:51
Yes. So the church is important to me and my family. So I was raised in a church. And that was the place that we got all the information we needed. We needed. We even ate there, we did everything at the church. And, you know, if you go into literature, and you know, a lot of people know that, you know, the black church is the cornerstone of the black community. You know, even if you go back to the civil rights, I mean, this is where everything happened. This is where movements, I mean, this is everything. So not only are your spiritual needs met, but also these other needs that you had. And so that was my reason for saying, you know, what, I'm gonna start at the churches, you know, make sure that I can get the faith leaders on board. And so when I partnered with the churches, the name of my program is altar, the altar program, and this is where we're trying to shift and alter perceptions of dementia in the faith community and also in the black community. And so, I meet with the faith leaders and I we go through all the statistics We discussed this and you know, I, they have to be on board on wanting to make change and wanting to be that resource for their parishioners, and also for their community. And I think it's really, really key in like you said, part of the program is we're equipping them, were inspiring them to better support these families that are facing dementia. And we do that through support, education and awareness, and also through worship. And so we have these three tiers that we work with them on, and we actually make sure that they have the resources that they can put these things in place. We also financially support them. Right? So there's like no reason, we cannot do some of these things. And even during the pandemic, there's a lot of things that we can put in place, even if it's restaurant scholarships, and how significant is that for your church to provide you a stipend. So you can get respite for a day or a half a day. To me, that's really significant to know, my church did that for me. Yeah, without me, you know, trying to call all these numbers, or going online, clicking this and miss my church knew this is what I'm going through. And they provided that to me. So something that can be so simple can be so meaningful for a family that's going through this journey. And that's just an example of what we support the churches and going,

Dr. Regina Koepp 16:35
Oh, I love it. So it's, it's a combination of spiritual, emotional, community support, and education, resources. Just great. And so you're, you were saying that you work with the faith leader, and you have to be sure that the faith leader is on board? How do you do that? And why is that key?

Dr. Fayron Epps 16:57
So for us to get into the faith community, we always have that one person, you know, a lot of people call them gatekeepers, or just that one person to say, I want this at my church. And we said, that's great. But you got to get us a meeting with your pastor, your Bishop, you have to give us a meeting. And so once we get the meeting, you know, this is when we have the conversation. And then I have to tell you, sometimes it's just not on their forefront. It's not on their agenda at that time. And that's fine. We will loop back but some of the pastor's once we go through it, and we give them a quick education. Then they start reflecting back and saying, wait, I had one Bishop told me. So my uncle had dementia. We used to just laugh at him. He was sitting in the room in the corner, when we have the, you know, get togethers and stuff. And we would just laugh, but listening to everything that you say, You're telling me he had dementia, you know, and so, you know, that's eye opening, eye opening for them, and they're like, wow, something that's something that I overlooked. Yeah, imagine what's happening within for my members in the community. And so those are some of the things that come out of our conversation. You know, people realizing my mom had vascular dementia, and no one told us, right, because those signs and symptoms you just went through. That's what my mom had. And that's what my brother was dealing with. And I didn't know, right, you know, and so, you know, they start coming up with their own testimonies, and reflections as once we educate them. And that's the churches are just really gung ho and say, You know what, we're gonna put something in place, even though we don't know if any of our parishioners or congregants have dementia, because that's another thing. In the black in the black community, we're not saying anything. Great, Regina. I mean, they're they're not saying anything. They don't tell their pastor. So when I first set the fuss, yes, I do first, when I first set the posters, they're saying, but how are we to know if they don't tell us? And when i x Sister, sister Sally, well, how's everything going? She's gonna tell me everything's going great. You know, that's just the automatic response that you tell your, your your leader, oh, everything's going good. So then how are they supposed to know? And so it's two way you know, making sure that the leaders are aware and sensitive, but then also, educating the parishioners letting them know that and then giving them that comfort level saying that it's okay to go to your leader. And we have the leaders mentioned dimension, don't a service like, you know, they can bring this up so that their visitors and their members can say, oh, okay, so and so does know this. And so it's a work in progress. Yeah. And we're working with It's several churches in Georgia. And we're also expanding outside of Georgia, since a lot of things are more virtual.


The importance of trust in dementia education with Black families

Dr. Regina Koepp 20:07
You know, on one hand, there's the there's the education piece. On the other hand, there is a trust history with the medical system, right with African American families. An access to information is the information when we see this happening right now with the COVID vaccine is the information that we're getting accurate? Do we trust that we're going to get access to resources and information, the information that we truly need? 

Dr. Fayron Epps 20:30
Me evaluating that trust starts within myself? Because I am from the African American community? And so I just have to reflect with myself? How does this trust look, you know,How can I present this material so others can get in and understand it, and know that I'm being honest with them, and I'm bringing them the facts. And so before every education or before I do anything, I sit down, and I just have to reflect, because I know how I feel about certain things. And I know even though I am a nurse, I know how I feel about healthcare professionals. And when I go to the doctor, how I know how I'm treated, despite what my educational background is, despite my profession, I know how I'm treated. And I think I bring that into my education. So we can have those conversations, and I opened it up, you know, and I, most of the time, pre COVID, we conducted the education at churches, because this was the safe place. This is the Haven. And so we allow those conversations to happen. And so when those questions did rise, and someone asks about how can we trust this information? It was me bringing them the facts. You know, and me being honest with them, letting them know that I had to go through this myself before I can bring it to you had to work through the mistrust myself. Yes, yes, I'm sorry. Yeah, I had to work through the mistrust myself, in order for me to bring it to you. And you know, I think that they recognize that. And then also getting it from the the faith leader, as well as having them stand up and speak about it also assisted with, with any distress or mistrust that they may have with the medical community. And just recently, one of the pastors. For one of our promotional videos, she said that she said that the mistress still exists. But we as pastors, we have to be educated in all these areas, because they trust us, and they're gonna come to us before they go to a physician. And so we need to make sure that we are well equipped, well informed and educated not only on dementia, but other topics, as well, like you brought up with the vaccine. Yeah, so I see, you know, having the faith leaders on board, providing testimonials with me educating with me, and then also me, making sure that I deal with the mistress myself before I present it. I think that has helped when we present the material for it to be well received.

Dr. Regina Koepp 23:30
Okay, can I ask you a personal question? Yeah. How did you work through your own mistrust? How, what do you do? And I'm asking, because I think that there are people listening who might need to do this work, too. And I think it could help to hear what you do.

Dr. Fayron Epps 23:44
Yeah. So I think the main thing is me educating myself, no matter what the condition is making sure that I'm well educated about this. And when I do go to any of the providers, I know, I have a choice. And I think that's what everybody has to realize, you have a choice. And perfectly I do prefer African American providers. But that doesn't always happen in my area in my network for my insurance, and all that great stuff. But when I do go to my provider, and they're not African American, for that first visit, if it's not, you know, there's not a connection. And if they're not there to listen to me, I have a choice, not to return and to get another physician. And that's the part that I know. And I think that's what helps me work through it because I've, I've educated myself before I seek out the resources or before I go to any provider visits, and then I know if I'm not getting what I need. I have a choice not to return and to choose another provider. And I think a lot of people feel that they're stuck. Yeah, they're stuck with this doctor. stuck with that, and then that's not for the most part, that's not the case, I should say, yeah, you know? Yeah, you have, you have choices. And you know, I speak up. You know, there's so many times, you know, and this is just recently, so before I wouldn't speak up, you know, this will go in, let them do what they have to do, whatever. And I probably wouldn't pay attention to half the stuff they say. But now I know how important My health is. And I speak up when I think they're not doing something correctly. And I think we, in the black community, we have to, we have to do that. We cannot be intimidated by the white coat.

Dr. Regina Koepp 25:43
You are top educated, though, in healthcare, you're a nurse scientist, PhD, right? So imagine there's somebody that you're educating at church then who are not, you know, professional in the healthcare space? What would you suggest then, because people might not know what to ask for, or what the doctor might be missing? Do you have any recommendations there?

Dr. Fayron Epps 26:10
Well, that's the conversations we actually have at our meetings, and even our webinars, we have these conversations on Okay, what should I ask? And I think, you know, of course, you can go on the internet, but sometimes, you know, the, is still too high level, or it's just like, wow, there's too many clicks and stuff like that. But I think going to talk with others, and going to education events in, in education events are that's most beneficial when you can have dialogue. Yes. And those that you can say, Well, what should i x? And that's exactly what happens in our events. What should we x? What do we say? When How about this? How does this happen? You know, we do algorithms, we like you know, a pathway for the families to follow and work them through that. And we have a lot of families that would just call us. And so that's my part, you know, I might not have Okay, this what you need to do beforehand. But when you're in a situation, because we don't know what situation you'll be in Sure, you can call us. And we have faith leaders that call us because sometimes they just get really stumped and they don't know. What should I tell my member?

Dr. Regina Koepp 27:27
Wow. Such a valuable resource and and speaking to the importance of the relationship and the community. Yes.

Dr. Fayron Epps 27:35
Yeah. And and yeah, I feel good. You know, Regina, I feel so good when I get those phone calls, because I feel they trust me. And then that keeps me going and make sure that I'm staying on top of my stuff. So I can bring them the best information. But it feels really good when I get those phone calls no matter what time it is. And yes, I work 24 seven. But it's okay. Because I know that I'm really impacting. And I'm changing things for alpha folks. And, you know, they can call me and just knowing that they were not afraid to pick up the phone and call or text me means so much to me. And I feel like okay, I've done part of my job.

Dr. Regina Koepp 28:21
Yeah. Because you just created a sense of empowerment and, and a sense of, you're entitled to excellent health care.

Dr. Fayron Epps 28:30

Dr. Regina Koepp 28:31
Do you have three recommendations to give to Black families of what to do if they're concerned about an older loved one?


The number one recommendation Dr. Epps has for families concerned about an older loved one

Dr. Fayron Epps 28:39
I have one main recommendation is go to the doctor to get a formal screening, or formal test. I mean, that's the only I mean, that's the only recommendation that I have for that is for them not to be afraid. And to go to the doctor. Some families may want to do a family meeting prior. And and that's fine. But you're going to also have to do a family meeting afterwards. And so the main piece of of it is going to a provider. Yeah, so what nurse practitioner, a geriatrician, a physician, a neurologist, whatever they choose, we're going to get that too, get that checked to get it screen to make sure because it might not be a dementia diagnosis. Yeah. All right. It could be some other it could be a vitamin B 12 deficiency, it could be a urinary tract infection. And so those are a lot of things. I want to tell people you know, they like you, I tell them the signs and symptoms and they like oh, you given us a death sentence because I have eight of those symptoms and blah, blah, blah, and I'm not gonna go to the doctor because I'm just gonna leave My best life and that's what it's going to be. But how about is not dementia? And how about it's something that once you treat it, those signs and symptoms will not be there. And so it's really key to get it further evaluated. And so that is my main recommendation.

Dr. Regina Koepp 30:20
Great. Now if people want to learn more about the work that you're doing educating black communities and African American churches, and how do they get to call you anyway? What can they do? Where can they go to learn more about what you and and the outreach you're doing?


Connect with Dr. Epps

Dr. Fayron Epps 30:37
For those that are interested in more information, you can feel free to just Google my name. They run apps and a lot of information will come up, and it'll take you to some of my websites. But if you want to get directly in contact with me, you can call my faith village number. And that's the name of my research lab. It is 678-723-8188. And you also can email us at faith [email protected]

Dr. Regina Koepp 31:08
Excellent. And are you doing any faith village community work outside of Atlanta and Georgia?

Dr. Fayron Epps 31:17
Yes, I am. So a lot of our education, since it is virtual, we can do it across the country. And a lot of my research programs are done remotely and from distance. So we also have a lot of families that we recruit outside of Georgia. And one of the main things we just Virginia, if you don't mind me mentioning here is we've worked with bishops, because you know, we talked about the spiritual connection being spiritually supported. And we've designed a dementia friendly online worship service that are no longer than 10 minutes. And we're actually looking currently looking for families to give us feedback on that before we can really scale it out and maybe put it in assisted living settings, or even long term care settings or nursing homes. So we have a lot of work that we're doing that is faith base, because we want to make sure that we spiritually support those that are going through this journey.

Dr. Regina Koepp 32:15
Now, just to be clear, these are 10 minute worship services for people living with dementia.

Dr. Fayron Epps 32:22
Correct. Okay, well, and we tailored it for the black community.

Dr. Regina Koepp 32:27
Yeah. Well, and because you're looking for feedback, perhaps you could give me a link to that. And I can include that in the show notes as well. I'll include that phone number and a link to the faith villages website. Dr. Fayron Epps, thank you so much for being here today. I really appreciate it. And I admire that work that you are doing to provide education and access to important health information.

Dr. Fayron Epps 32:51
No, thank you. Thank you for having me.


Subscribe and Leave a Review

Dr. Regina Koepp 32:54
That's all for today. Now it's your turn. All you have to do is subscribe, leave a review and share this episode with others so that they can be part of the conversation too. One last thing, a special thanks to Jasmine Joyner our psychology of aging podcast in turn, for all you do. Lots of love to you and your family. Bye for now.


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