Caregiving While Black: Dementia Care for Different Racial and Ethnic Groups

Transcript

Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. Today I'm joined by Dr. Fayron Epps. Dr. Epps is an assistant professor at Emory University's Nell Hodgson Woodruff School of Nursing with over 20 years of experience in nursing. She also serves as the principal investigator of the Faith Village Research Lab and is the founder of the Alter program, a nurse-led dementia-friendly congregation program. Through her research, she develops evidence-based practices for promoting quality of life for African Americans with dementia and their care partners, and works to connect these interventions with the individuals that need them most. As part of the WAI Annual Update conference this past November, Dr. Epps gave a presentation on “Caregiving While Black.” Dr. Epps, welcome to Dementia Matters.

Dr. Fayron Epps: Thank you. Thank you, Nate, for having me. I'm excited to be here.

Chin: Well, I'm excited to talk to you. Your presentation title is both attention grabbing and powerful. What impact did you hope to have with it?

Epps: Well that was the impact right? I wanted to catch the attention of all, and then also have Black caregivers that run across it pause and say “Let me see what this is about. This looks like this may be something for me,” without guessing “Is it something for me?” It is very bold. It is in your face that this is something, if you're a Black caregiver, you identify as a Black caregiver, this is for you, but then also it is bringing attention to all from all races and ethnicities that “Hey, what is it here? Why do we need a course just for Black caregivers?” So questions can be asked and we can respond and people can realize how different communities may need different tailored information so that they can relate to it and be able to apply it to their own lives.

Chin: And I'll say, as a clinician, I also was drawn to it. Knowing that I engage with different communities and that it is important for me to be able to tailor these things in a culturally appropriate way. So not only was it catchy, of course, but as the clinician I was drawn to it as well. So to help provide context, can you explain the Faith Village Research Lab and the Alter program for our listeners?

Epps: Yes, I'm going to try not to confuse our listeners, but my Faith Village Research Lab is just the title of my lab. Some professionals name their lab after their last name: the Epps Lab or whatever lab. Well, I really wanted the name of my lab to speak to what we believe in and we do believe in how important someone's faith is and the role it plays on this journey. And then we also believe that it takes a village. So, it's not just the caregiver or the care partner, it's actually the community coming together. That's why me and my team say we're gonna just go with it again, be bold and have the Faith Village Research >ab. Part of the research lab, our goal is to provide and promote dementia awareness through education, research, and service. And so everything that we do falls under the lab. The Alter program is one of the programs that we offer and that's the one that partners specifically with faith communities. So it's a dementia outreach program where we partner with primarily Black faith communities to make sure that they have the tools and the resources that they need so they can support their parishioners and the community at large that’s affected with dementia, and not only those affected with dementia. We also do a lot of brain health awareness to reduce our risk of dementia and then we also introduce research opportunities. How great it is for me to have these developed, trusting relationships with faith communities, which is the cornerstone of a lot of communities but especially in the Black community, and be able to introduce clinical trials and research opportunities to them as well.

Chin: I love that, I love that you didn't use your last name. And that's not to say anything about those that do. 

Epps: Correct, I just wanted to add a little flavor.

Chin: Yeah, well then let me ask you, when you went through your education and your training and you went through all of this time to become a researcher, is this the field that you knew you were going to go into? Is this the idea that you thought you were going to have at the end of all of this?

Epps: No, Nate. Honestly, I didn't even think I was going to be a researcher. I know that wasn't one of my dreams growing up, right? And so, with me being a nurse over twenty years, I just always thought I was gonna be a nurse, be in management. Once I did go back to get my PhD– I want to let you know, Nate, I didn't know why I was doing it. I just did it, a friend asked me to do it and I liked school so I was like, “Ok.” So I had no clue why I was doing it and the impact that I could potentially have with a PhD, but as I was going out and when I did my dissertation, it was with family caregivers.  I did it with the Latinx community, African American community, and also the white community, hearing from their caregivers. I was like, “Wow, this is interesting right?” And someone asked me to do a postdoc. I was like what in a world’s a postdoc? But it was such a great opportunity. Again I think just my love for learning, I think that's where this all stems from, my love from learning and then as I read more I’ve seen how dementia disproportionately impacted communities of color, which I wasn't aware of even though as a  nurse and a PhD-prepared nurse, I did not have a clue at all that this was happening. I had no one – we didn't talk about it in our family. That's what made me like, “Wait, what's going on here?” and really dig into it. Even when I started doing this work and meeting with families and doing – I started off with qualitative research in my postdoc and learning for the families. I'm gonna be honest with you, I did not know where this was going, but I truly followed up – like at the end of each study, whatever it's being recommended or whatever the caregivers say that they needed, I acted upon that. And I really reckon – I see myself as a community-engaged researcher that provides culturally responsive programs because I really listen to what my research participants and those in the community say they need and then I go back and start working on it.

Chin: I think it's great for anyone listening who's wondering, “What am I going to do with this training and this education?” or, “Where am I heading?” because clearly you're passionate and you found something that you love. And you're of course helping people so the nursing part of you is still helping people the researcher part of you is still doing it.

Epps: Yeah I wouldn't change not one thing. You recognizing the passion, I want to let you know, that is accurate because I'm really passionate about the work that I'm doing and making sure that, again, the communities, the people, have what they need. Even though I focus on the African American/Black community that does not mean I don't help all. So, I still collaborate with others, meet with others from outside of the Black and African American community to see how the resources that I've developed can help other communities.

Chin: Well one of the key themes that I took away from your presentation is that Black, African American dementia caregivers have unique experiences and that these really need to be known and addressed in understanding that experience but then also working to provide education and assistance. Can you share with some of our listeners some of these unique experiences that you outlined at your presentation?

Epps: Yeah, I think one of the biggest things that they experience – and this can be in all different settings – is being dismissed, having their concerns dismissed by not just health care providers by friends, coworkers, by family. That is one of the biggest things and that's not a good feeling. They know something's going on. They're trying to bring it to us to focus on the healthcare provider and their healthcare provider sharing that it's a scam or this is not true – no it’s menopause – instead of just taking that time to run the additional test that's needed. A lot of caregivers also didn't know – they weren't empowered with the information to bring to their provider as well. They're not exposed to a lot of information, so they may be showing up to a provider with just minimal information and don't don't know what to say or how to do the follow up. Those were experiences. The other experience was so many caregivers don't know, they just don't know what to do. Just because if they're – again the setting that they're in, they've never been exposed to certain resources and how to access them. When I meet with them like there's a lot of resources but they don't know where to start. They find that no one's there to help them. A lot of people want caregivers to come to them and we're not recognizing, especially in certain communities that have – historically marginalized communities, communities that are underserved or under-resourced – they don't have the resources to come to you or to come and meet you where you are, and they need you to meet them where they are. So those are some examples.

Chin: And those are such key examples though, and in your talk though you explain how you got to that. And so for our listeners who didn't see your presentation: how do you learn about these things? How do you compile these unique experiences and then, once you have them as a researcher, what do you do with that information?

Epps: During the presentation I shared the focus groups that we did. We held focus groups with a group of Black caregivers to hear from them. We had certain questions and we just want to basically hear their experiences during COVID-19, their experiences navigating the healthcare system, their experiences as a caregiver, and we listen. For those that are not a researcher who's like, “What is a focus group?” You can almost just think of a listening session. And so holding these listening sessions, just to hear from them and we used – what's another name for design thinking? But it's like we really wanted to hear from them and use that information to design the education. Yeah, some people refer to it as a user-centered design, when you're developing certain programs. So through this listening session the information that we got – and they knew that upfront, we wanted to use their information to be able to inform an education program. So they knew that upfront and then once we got the information, we shared it back with them. They make sure we captured it correctly and then we developed the education program. We had a couple of the caregivers go through it still to make sure that we accurately captured the issues and the concerns that they brought up.

Chin: It sounds like an easy process, a focus group, but it is very tedious and it's very difficult to get people to agree to a focus group.I appreciate hearing about the transparency. “We're going to use this meeting, this listening, for this purpose. We're going to return this to you.” But this is a really time intensive process.

Epps: Yes, I think starting from the focus groups all the way until developing the course is very time intensive. A lot of people think, “Oh, that's nothing. Get a group of people together. Y'all chat and then you're just gonna put some things in a course shell and go with it.” And that's not the case because you want to really make sure that it's responding to the needs of the individuals of the community in your target population. You want to make sure it's meaningful. When you start doing those things, that take a lot. It takes a lot of energy, not just from the senior researcher or the principal investigator, from the team. It takes a lot from the caregivers who are offering their time to be part of this. It's like, we're in this together. Actually we co-produced this course, “Caregiving While Black,” and that's how I present it. We’re co-producing this, y'all are in this with me. Some of them did video recordings for the course. We also brought in Black healthcare professionals. Some caregivers can make contact with me, people that they know were really doing some great work in the field to help bring these individuals and to do the recording. Part of this course  – a lot of people think it's just writing, right? Just narrative text. But we had interactive components and we had video components, and that's what takes up so much time. So anyone that wants to do this, please make sure you allow enough time to be able to really do it right. And it's, when we were done, it still wasn't right because I still see errors and I was still like, “Oh I cannot believe this.” But I know how much energy we put in it. We are now, Nate, we're revising it based on some of the feedback from the first wave of caregiver participants that participated in it.

Chin: It's an iterative process, right? So you constantly are trying to improve. So the focus groups, this happened in April of 2021, based on what I recall of your presentation. Can you describe for our audience well who composed the group? What were the individuals – you don't have to give specifics – but what were they like? And then what specifically was discussed in the focus group?

Epps: Yeah, so that's a challenging question. You’re making me go way back over twelve months. (laughs) 

Chin: (laughs) I'm testing your memory during this apparently.

Epps: So I can tell you this, Nate, all of them were Black caregivers. I can tell you that. (laughs) They were Black current or former caregivers within the last six months. That was the criteria. They were from four states: Wisconsin, Illinois, Georgia, and I believe we had a caregiver from North Carolina. Look at my memory kicking in! (laughs) We had caregivers that were providing care for someone in the same geographic location but we also had distant caregivers. We were trying to look at everything we had. Of course we had more women than men, but we did have the voices of male caregivers as well.

Chin: Do you feel like the age demographic was pretty spread out too or do you think most of them were in their fifties or sixties?

Epps: I want to say, let's say late fourties and up. Yeah, we had a range. We had some that were children and some were spouses.

Chin: Yeah, so a wide range. And that's what I was getting at, right,so the different role relationships because it is different depending on that role.

Epps: It is and then most of them were educated. That's something I think that all researchers, we just got to do a better job. It's getting a more diverse sample of their educational background. We know highly educated people tend to participate in research, so we got to work on that. That's something that I'm challenging myself on. But most educated had some college. I want to say that all had some college or above. Trying to think there was something else that was kind of –  oh, the class. Middle class, lower class you can see that it was diverse there. Even though we didn't collect that demographic data, through the conversation you can tell some that were actually their family was on Medicaid, while some had managed care. We had some that were part of the veterans healthcare system. So that lended to a very, not a healthy discussion, just a lively – that's the word – a very lively discussion, especially when we started talking about payer sources and the type of care that's associated with the different payer sources. To start hearing caregivers share their experiences and their stories living here with this type of insurance or payer source and then here, it was very interesting.

Chin: I mean that's a diverse sample within Black, African American caregivers, which is a very important aspect because it's not just being a Black caregiver. There's obviously a full spectrum of people that fall within that category each with their own unique experience.

Epps: Yes, yes.

Chin: You were able to capture that. That's really impressive. And that lends to my next question is: what was discussed then in these focus groups? So what did you take away from them?

Epps: So we start to – like what I mentioned about the payer source, right? What they experienced during COVID-19 was really key. And then also again it goes back to the payer source. But, we focus a lot on navigating the healthcare system. Their experiences navigating the healthcare system: the good and bad of telehealth. What are the resources that they had access to, what they didn't have access to? Those were things – and one of the things, the main thing of my presentation was at the end of the day, what we got out was that they felt that many of them were falling between the cracks of the healthcare system. That really stood out that the healthcare system is broken and it's not there for them to support them. That stood out and that really touched me, because, with my experience working in acute care and even long term care, hearing that is like, “Whoa, we need to do better.” This is what they're saying. These are not the words I'm putting in their mouth. I didn't expect to hear that but these are their words.

Chin: And that's actually what I wanted to ask you. I want you to pretend now that you are a listener to your own presentation. I want you to remove your PhD and put on your nursing hat. You hear this information, you hear the struggle and the falling through the cracks. What do you want clinicians to do with that information? What would you do as a person in the front line with that information?

Epps: So, as a nurse, and for those clinicians that are listening, hearing this I would tell myself working on a floor: pause and take a minute and make sure that you're meeting the needs of your patient and their family. Not just that caregiver but their family. So many times we're so busy, and I understand how staffing is and this and that, but sometimes we just need to pause to make sure that we hear and we are listening to our patient and our caregiver and that we're trying our best. Again, meet their needs or respond to them so they can have the best quality of care, for them to receive the support that they need, and no matter what that person's background is – their culture, their faith background, if they're from a non-minority racial ethnic group – it should not matter to me. What should matter is that we're trying to make sure that they achieve the best outcomes that they can for their condition.

Chin: I want to transition then to one of the products that came out of this important project of yours, this study, and that is this caregiver course, this module that I know you're editing now, but you do have a final product that you're using. Can you share for our listeners, what went into the course or what does it look like and how has it been used and what kind of feedback have you gotten?

Epps: Yeah, so what went into the course – a lot of sweats, tears. (laughs) I have Nate laughing. In addition to the sweat and the tears that went into the course, this course is set up. It is all online. It is self paced. We divided it up into four modules. Our first module is just introducing what dementia is because there's some caregivers in this role. I had a call today, “I just need to learn more. I'm caring for my mom but I don't even know what dementia is. right.” So in the introduction it was talking about dementia, dementia in the Black community. During this time we talked about COVID-19 in the Black community as well. So we took this as an opportunity to discuss that and also to bring awareness around receiving vaccines. That was in the introduction. Then we had, “Navigated the Healthcare System,” as another module that had so many topics but it was how to talk to your healthcare professional or your healthcare provider. We broke down the different units in a hospital, because you know, “You’re getting transferred to SNF, you get this, this, this, ICU.” And they don't have a clue; many caregivers don't even know what that is, so we broke that down. We also broke down the different professionals that they may interact with. What’s the difference is between your case manager, physical therapists, occupational therapists, and what are some of those duties? We talked about hospice, palliative care. Those are just some examples. Then we did managing home life, which is how you plan your day. We had a video from a person living with dementia in the early stages, which was so great because she shared what she worked with her care team to put in place to manage her day. Actually hearing from someone living with dementia what they like and what they needed was very key. We brought in an attorney to talk about life planning again. That's part of managing your home life, right? Just getting prepared, getting things together, and then self-care. We took time to really dig into self-care and also address mental health awareness under our self-care. We know this is really important, especially in the Black community where counseling is not sought after. Mental health is another taboo topic in addition to dementia, and so we want to take time to make sure that these caregivers know to be aware of tools that exist that they can use to assess their feelings. They were getting this education, but they also were walking away with tools and resources that they can use after the course is done and they can continue to use and share. We encourage them to share with other members of their family as well. We provided a workbook because there was a lot of things that we talked about we wanted them to download, and we have to understand and recognize that everyone may not have the means to download and print. We provided them a workbook that they can use and they can tear out of and start again being able to use a glossary that they can keep and be able to use. I had a caregiver call me up and she was in a crisis and she said, “The first thing I grabbed was my workbook.” And I was like, “Wow.” Again, this is not something I expected that was an outcome but knowing that she felt like she had something to grab that can help her until she gets some additional assistance. A lot of the caregivers provided testimony and many of them didn't think they needed an education that was just really tailored to them being a member of the Black community, African American community. But once they got into it, they were like, “Wow, the disparities do exist. We do need this.” Again, that's what I wanted them to see. Many felt empowered. We had one caregiver share they were receiving information from people that looked like them. I think that was valuable to the caregivers for them to say, “Seeing someone look like me just really made it feel like I was at home.” When I spoke with the healthcare professionals that did the videos, I gave them instructions. I didn't want them to be formal. If y'all see some of my videos y'all might be like, “What?” But I didn't want them to be formal. I asked many of them to take off their white coats, right, because there is such a thing as a white coat syndrome and I didn't want any of that. I wanted them just to talk to me and talk to the caregivers out there. I said, “I want you to tell me what you would like to tell every Black patient that comes to your office but you cannot because you don't want someone to report you. You want to follow the policies, but now we've taken all of that off. We're not naming the workplace or anything and I just want you to talk to us.” And Nate, I want to tell you, I learned and I was a nurse. I was in the midst of all of this, but I learned so much about discharge planning. I've learned about what the social workers are really there for. I learned how to communicate and navigate a doctor's appointment because they broke it down as it relates to how many minutes you have. This is, “I'm coming in with my agenda and you have your agenda. We need to meet somewhere in the middle. And it's not that I'm being mean but I've already looked at some of your labs and we need to cover this and I know you have this.” They just went through this to say again, it's not us being mean but when we see some pressing things on our end, we need to address it so we do need you to come prepared and be able to share with us immediately what you have as well so we can make these few minutes that we have together, make it worthwhile.

Chin: It sounds so powerful, Dr. Epps. And of course I'm going to ask a question. I'm sure our listeners are thinking, “Well can we get our hands on this module?” Is this available to the public or is this just a part of your study?

Epps: So right now it is still part of the study. I have not yet – but I want to make sure once we open it up to the public that it is something that I have the evidence to show that, “Hey, this does work with caregivers. This increases their mastery, self-efficacy.” We showed in our college, seeing how it had a significant improvement for role strain. I believe it was burden and that's good.I want to make sure that in a larger sample that we'll be doing in the spring that it still shows those results. Then we'll be ready to put it out there. In the meantime, I would love them to contact me and I can add them to our list and they can co-produce this. That's what I say to my caregivers that are taking this course, “You all are still co-producing it because I'm taking your feedback and going back in and making those changes.”

Chin: We can certainly put your lab link on our website so those that are listening can email you and contact you. I'm asking you more of a philosophical question. Do you think the course will translate to other Black communities that you're not studying? You mentioned four states but not all communities are the same even if they are Black, African American. And then even beyond that, some of the experiences of racism, discrimination, and stress could be experienced by other communities of color. Do you feel like the program could actually benefit other communities besides African American?

Epps: Yeah, so I'll start off with the first question – if we can help Black caregivers across the U.S. This course is for caregivers anywhere so it was informed by four states, but we tried our best and we brought in experts from diverse areas. We tried to keep it general, so we can really be able to meet the needs of caregivers from across the U.S. Our caregivers who took the first wave of the course were from all over – California, Wisconsin, Illinois, Texas, North Carolina, Virginia, New York. Of course, we're in Georgia so we had a lot down south. We really tried our best to get across the U.S. I am really hoping that this course will serve as a model for other racial and ethnic groups so that they can have some other education that can be tailored and that it's okay to specifically say that, “This course is for a particular group,”even if it's not racial and ethnic minority group. It can also be for LGBTQ. So I'm actually able to put that out there, Nate, we're actually in the midst of conversations to develop a similar course for LGBTQ. Just having that that speaks to their needs, I believe it's really key. I know there are some education modules that are out there for Latinx caregivers so that's great. But I'm just thinking about all the other groups. We think about Native American caregivers and others because they have their own different culture and own different way of doing things.I think it's just important for us to think about that.

Chin: Well then to end, my last question for you is something that came up during your presentation. What is FUBU and why is it important when we talk about community engagement?

Epps: Yes, so FUBU is a clothing line years ago. Not too many people wear it but it stands for For Us By Us. If you notice I mentioned earlier about being co-produced, caregivers are co-producing this. I also brought in Black healthcare professionals, Black persons living with dementia and so again, they contributed to the “for us by us” approach. It was Black people developing this course for Black people. That's very important, even my other work with the Alter program or work I do with the churches, that came from my advisory board. They said “This has to be a ‘for us by us’” and so our advisory board is primarily made up of African American individuals. The things that they're doing is for their community because they did not have it when they were on this journey. We did not have this so we’re about to develop something that we needed so it can help out members of our community. Again, that's really important for those that are doing work in the community, you have people at the table that are from the community to develop things for their community.

Chin: Well thank you for the community work that you're doing and for these studies.I can't wait for you to start sharing this amazing module with the rest of us, but I guess I'll have to wait. Thank you for your time, Dr. Epps, and I certainly hope to have you back on the show in the future.

Epps: Sounds good. Thank you, Nate. And thanks everyone that listened in and I look forward to hearing from you all.

Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you listen or tell your smart speaker to play the Dementia Matters podcast. Please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin--Madison. It receives funding from private, university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode of Dementia Matters was produced by Amy Lambright Murphy and Caoilfhinn Rauwerdink and edited by Taylor Eberhardt. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu, and follow us on Facebook and Twitter. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.