Eric: Welcome to the GeriPal podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: Alex, who do we have with us today?
Alex: In studio, we have Karen Moss, who is visiting us. She’s an assistant professor at The Ohio State University School of Nursing and College of Medicine. Welcome to the GeriPal Podcast, Karen.
Karen: Thank you. Thank you for having me.
Alex: And we’re delighted to welcome Fayron Epps, who is associate professor and director of Community and Research Engagement at the School of Nursing at Emory. Welcome to the GeriPal Podcast, Fayron.
Fayron: Thank you. Glad to be here.
Eric: Our topic today is African American Caregivers for Those Living… Wait, oh, I had the title then I just forgot about it. [laughter] Alex, what’s the title?
Alex: African American Caregivers of Older Adults Living With Dementia.
Karen: That’s it. [laughter]
Eric: See, audience, we actually do pay attention to things like our titles, but before we jump into that topic, we always ask for a song request. Who has the song request? Karen, is it you?
Karen: I do.
Eric: What is the song?
Karen: It is I’ll Fly Away.
Eric: Tell me, Karen, why did you choose this song?
Karen: It is so appropriate as we talk about advanced care planning, end of life, death and dying. Oftentimes, we all want to fly away. We want to get to that afterlife, but some things are going to have to happen before we get there. Perhaps by planning we can make a difference in what that looks like to a certain extent.
Eric: And somebody told me you’re a professional tambourine player.
Karen: Somewhat. Somewhat.
Alex: So Karen is going to be joining us with her tambourine.
Great tambourine. Love it.
Karen: Thank you. Thank you.
Fayron: Amen. Amen.
Eric: When did you learn how to play the tambourine?
Karen: Just now. [laughter]
Alex: That was great. All right, so-
Eric: Can I stick on the tambourine question?
Eric: That looks like a personal tambourine. Did you fly to San Francisco with your own tambourine just for this podcast?
Karen: I actually did. And actually somebody stopped me this morning outside of the building and they said to me, “Looks like you’re going to have a great day today. You have a tambourine with you.” I’m like, “Absolutely. Of course, I’m going to have a great day because I have a tambourine with me.”
Eric: There is no bad day with a tambourine. [laughter]
Alex: Well, let’s get into today’s topic. African American Caregivers for Older Adults Living With Dementia. So I want to start with you, Fayron, and just we always start off with this question, how did you get interested in this topic?
Fayron: I think I was interested in family caregiving early on because I had it in my family, but it wasn’t until my postdoc days when I was writing my application that I needed to narrow it down. I started going to the literature and I noticed that communities of color, those with the Hispanic background, Black individuals were disproportionately impacted by dementia, and I couldn’t believe it. I was like, “No, ’cause I’ve always been taught that this was a disease for white people.” The more I dug into it, I seen what the literature, what research was saying, and that’s when I took it on because here I was PhD prepared and a nurse and didn’t even recognize how this was impacting my community. So that was my reason for taking it on, and 10 years later, here I am.
Alex: Great. How about you, Karen?
Karen: Great question. So I was always fascinated by the whole death and dying and still am extremely fascinated by death and dying, always anything end of life. Learned later on, as Fayron indicated, about the disparity related to Black and African American individuals as it relates to dementia, it being a fatal disease. So all of these things came together for me, brought my love and interest around death and dying, and then adding into that the whole dementia caregiving piece where there’s such a need. So what I saw in the clinical space also both in the United States and in my home country of The Bahamas just made it made sense for me to look into this a little bit more.
Eric: I also love how during that entire time, your tambourine is also adding to the discussion. A little tingle.
Karen: Yes, just making sure people stay on their toes.
Eric: I could put that right here, too.
Alex: So I want to ask a follow-up question about terminology. I think that we’re always trying to use the most sensitive and inclusive and best terminology. So I want to check in with you about your thoughts about best terminology for what you’re studying, and one-
Eric: Like our title, right?
Alex: Yeah. Right, like our title.
Eric: Is it African American?
Eric: Is it Black?
Alex: Right. Let’s start there. What are your thoughts about that? I know, Karen, we talked about this a little earlier today. Why don’t we start with you, and then we’ll go to Fayron?
Karen: Yeah. I think the reality of it is it’s whatever the person prefers. So we would do our due diligence as researchers to ask. For me, with the research that I’m currently conducting, when I started out, I used the term African Americans. I was told that that was the most acceptable term of the day. We know that over time terminology and the preferences around terminology changes a lot of times with societal shifts. I think that’s something we’ve seen even with the most recent issues that came out, not new issues, but came to the surface with the racial reckoning that we saw in 2020 related to murders and deaths and killings and that sort of stuff that helps to reshape how we refer to different groups of individuals in our community. But I would say it is whatever people prefer to be referred to. As of now with the research that I’m conducting on the advice of my community advisory board, we are being inclusive and using the term Blacks/African Americans for my work at this time.
Alex: African Americans, does that connote people who came to the United States as enslaved people, or might it also include people whose descendants are from Africa?
Karen: So for the purpose of the work that I am doing, and the way I define it for this work is anyone who is descended from sub-Saharan Africa and are currently residing in the United States, they are able to be included in this research. So whether you were born in the United States or you relocated to the United States, you are considered qualified to be a part of my research with this regard.
Alex: Yeah, I like that approach too. I’ve been using that in my own lately, Black/African American. What about you, Fayron?
Fayron: Yeah, I do the same. I think, again, it’s the person’s individual, their preference. But many times, I get the question, “Well, how do we even approach someone before we find out what their preference is?” ‘Cause sometimes you’re in a situation where you cannot ask that. Again, it’s the environment that you’re in. So if you’re in an African American Methodist Church, well, you may want to say African American. But for my work, more recently I’ve been using the term Black individuals, Black families ’cause it’s more broader and it’s all about how that person identifies at the end of the day.
Alex: Yeah, and I heard another one from you, Karen, that I thought was really illuminating I hadn’t heard before and that is concern over the use of the term stakeholder. I wonder if you might say a little bit about that.
Karen: Yeah. This is something that was all over the research that I just wrapped up last year. Because of the shift, and again, when you know better, you do better. So the recent literature that’s come out around the use of the term stakeholders and how it can be offensive to some groups, including our Native American friends, we do not want to offend anyone by this work that we do and the terms that we use. So I have moved away from using that term and following guidance even from the NIA, work that’s coming out. We have a paper that we’re going to be hopefully getting out there soon that talks about even the CDC’s guidance. There’s a whole website from the CDC if you don’t know about it, that talks about terms that are considered acceptable and are non-acceptable, sorry, and they give recommendations for terms that are. So for example, instead of using the term stakeholders in my research, I’ve moved to engaged partners as it’s applicable. So that’s just one suggestion. That may or may not work for the work that folks are engaged in.
Eric: This may be a stupid question that shows my naivite on this subject, but can you explain stakeholders in particular? What’s the problem with stakeholders?
Karen: Yeah. So one of the conversations around this in the Native American community can be around who had power, where the authority lay or lies in terms of the issues that folks face in the community from going back in time with history. But I don’t want to preface anything too much, and I would refer people to that CDC website and the wealth of literature that’s out there on it. Again, when we recognize that there is an offense that can be had to a certain term, we try to do our best. Again, like we said earlier, terminology changes over time. Tomorrow it may be something else that is considered more acceptable. I think as researchers, we need to do our due diligence to follow that and healthcare providers, of course, ’cause we want to be sensitive.
Alex: Yeah, that’s well said. I think Krista Harrison said this morning that the concern is when colonizers came over from Europe, they literally put stakes down in the ground on land that they were stealing from the Native Americans, and that’s where the term stakeholder came from.
Fayron: Yep. I want to say, Karen, you say do our due diligence as researchers, but I think also as researchers, if we hear from the community that a certain term or phrase offends them, that we need to listen and ask them, “Well, how can we say this different?” Not go about and say, “Well, this is what we’ve been using. This is what it is. This is so easy,” ’cause we can write a sentence with stakeholder in it like this. But it does take an extra two minutes for us to replace that word. But I think it’s important that we do so we can respect all cultures. So I think it’s very important.
Alex: Very well said. I want to stick with this thread here about caregiving in African communities and ask the two of you who’ve done research in this area, what is unique and what is about caregiving for persons living with dementia in African American communities?
Fayron: So I’ll start, Karen, if you’re okay with that.
Karen: That’s fine.
Fayron: So I get this question a lot, and sometimes I get frustrated because a lot of people are like, “Well, what’s the difference? A caregiver is a caregiver, it doesn’t matter the color of your skin. I don’t understand why they need to have certain programs that are tailored for a particular race, ethnicity, or culture.” One of the things is we have to realize a color of someone’s skin makes a difference. It makes a difference just outside of caregiving, how we live everyday life, and we know that. A lot of things have been happening over years, but now these recent years, things have been highlighted that happens to many people or Brown and Black people. So imagine these things are occurring in addition to caregiving. So caregiving overall is already challenging. But now as a Black caregiver, I am faced with when I’m going to the store to buy groceries for the person I’m caring for, I’m faced with, “Am I going to return home? How do I get to the store safely, return back as well?”
So that’s just one example. Even when we’re engaging with the healthcare system, there’s a lot of literature that talks about the discrimination that is often Black families face, and then it is true. Many people say, “Oh, well, we experience that too,” but it’s something different. It is something different and you know and you watch others go up to the same doctor’s office and they ask for something, they get it, and you follow and you don’t get it, or you get ignored. Those are the things that Black family caregivers that I’ve been working with go through. That’s why I developed Caregiving While Black, ’cause it was one Black caregiver came to me after I spoke at a church and she said, “Dr. Epps, all that education, everything you gave me was good. Thank you for it, but it didn’t resonate with me.” I was like, “What you mean?”
She was like, “That’s not what I need.” I need to know how to find a grocery store in my neighborhood ’cause we don’t have these things. I need to know how to, not to go to a fine dining restaurant, I just need to know how to eat at the table.” Just things like that. “I can’t go to the police station and say, ‘Here’s my dad’s record,’ would never do that.'” So these are things I actually heard from caregivers. I’ve seen them shut down in support groups. We want everyone to attend a support group, but they’re in a support group with other races and ethnicities and everybody’s showing their experiences, and I’m witnessing them shut down. When I follow up, they say, “This wasn’t a place for me because I’m not concerned about how I’m not going to go to France next year. I’m concerned about how can I get my dad diagnosed or get this proper care.” So those are the things that really led me to develop Caregiving While Black, where it really speaks to the unique experiences of being Black in America and a caregiver. I’ll pass it to you now, Karen.
Karen: Well said, Fayron. I think about when you mentioned this notion about support groups and thinking about the needs of these Black caregivers, I don’t think there’s too much more that I can add about your explanation of what the needs are. But when we think about something that I heard from my participants as well in our studies about, “This notion of support groups are great, however, I can’t get to a support group. Who do I leave my loved one with? How do I engage in being a part of something where I have to be at a place at a certain time?” So from those sorts of feedback from individuals who participated in our studies, we were able to co-create Pair 2 Care, which is a peer support program, an intervention that pairs current and former caregivers with our former caregivers serving as mentors and our current caregivers serving as mentees in a way that they can bring together their experiences as Black and African American caregivers and the mentee learn from the mentor.
Alex: I want to just stick with this a little bit further and ask about each of your own research into this area just a little bit. I really enjoyed reading, and we’ll have links to this in our show notes, going back to you, Fayron, about some themes you found about caregiving, Black caregivers of people living with dementia, I think around the complexity of the family structure and who was involved. I wonder if you might say a little bit about that for our listeners.
Fayron: Yeah. Okay. Let me see if I remember that paper, right, Alex?
Alex: Oh, sorry.
Fayron: No, no, I’m just joking. So I think it’s not just that paper, several papers that we look at that caregiving may not be in the traditional way, and it may not be that one person, and it may not be that person that’s providing that support and care may not be a blood relative.
Alex: Yeah, right.
Fayron: So we have to recognize that when we work with not just Black families, but other families from diverse racial ethnic groups that their social network, their care network, may look different, and so that’s one thing. Then as we look back at the complexity, it also looks at the environment that these families are in and how that influences their ability to care.
Alex: Yeah, that’s great.
Fayron: I think, Karen, you were a co-author on that paper with me, right?
Karen: Yeah. Actually, for those who don’t know, this paper was cited in one of the Alzheimer’s Association Facts and Figures Report-
Alex: Oh, nice.
Eric: All right.
Karen: I don’t even know if you were aware, but I stumbled across that really important piece that actually came out of a GSA symposium that Fayron and I and colleagues were a part of a few years ago.
Eric: Go ahead. Go ahead. We’re going to fight, me and Alex, right now over the next question.
Alex: Well, let me just ask one more, sticking with this, Karen. You said something about your research in this area this morning pertaining to views of that term, end of life or end-of-life care. I wonder if you could say a little bit more about that.
Karen: Sure. So this was actually what my very first study where I asked the question of these Black and African American dementia family caregivers about meaning and understanding around end of life. One of the questions was, “When you hear the term end of life, what does that mean to you?” Universally, people said, Death, dying.” I thought, “Well, maybe I need to ask this in a different way.” So my follow-up question, the probe to that was, “Well, when you hear the term end of life, do you think about before death, after death, or both?” I will tell you that even in instances where people said both, the next thing that they talked about was the after-death experience, whether or not funeral plans, burial services, that sort of stuff were taking care of. So the disconnect there potentially with healthcare providers is when we talk about end of life and end-of-life planning, we’re thinking about the before death stuff.
So whether or not somebody wants to be on CPR or ventilator, that sort of thing. But the priority for these individuals, a lot of focus, and I totally get it, is on those services and the celebration of life afterwards. Even in my own culture, we see that as being extremely important, and we should as healthcare providers never negate that. But if we have this disconnect, we have to be able to recognize it, recognize that this is important for patients and families. Although what we’re trying to get at in the moment is that before death piece, because we know that something has to happen before we get to a funeral. What that looks like, to some degree, by having a conversation, by documenting wishes, we can potentially influence what that looks like and what that experience is for that person who is dying and then also for family members who are left behind.
Alex: So potentially really splitting out the before death and the after death components when we’re talking about what’s important to people who are facing serious illness.
Karen: Yeah, so just just being clear on where people actually are in their understanding and not making assumptions.
Eric: Fayron, we’re going to go back to you now, a major theme running through your work is the location of your work in faith communities and churches in particular. I wonder if you could say something for our listeners about why that location?
Fayron: Why the church?
Fayron: Why the church? Why the church, Fayron? So first I want to just say that I am a woman of faith, and I was raised in the church. As I started doing my research, religiosity was so important to me, and I wanted to study it. I did it for my dissertation. But after my dissertation, people said, “Ah, nobody’s ever going to focus on that. Nobody’s worried about spirituality.” The church, they didn’t want to hear anything. I just kept put-
Karen: Boy, were they wrong.
Fayron: Were they, right? But it kept coming up in my research. As long as I was doing research with Black families, every interview something came up about that person’s faith, them attending church, their spirituality. So I just had to take a chance and I say, “You know what? I’m going to do this. I’m going to explore this.” Literature shows that especially in the Black community, the church is a cornerstone. It also has been a haven for many years for African Americans, for Black families, this is the place where they can come, they were safe, they can have meetings. Sometimes it wasn’t always about worshiping, it was after, what happened after the worship experience, those meetings that took place where they actually started movements.
So that’s so important and I feel like, “Well, why not go back there and make sure that our faith communities are equipped to support these families? If we’re saying that Black families or Black individuals are disproportionately impacted by dementia, why not prepare the cornerstone for this so they know how to better support their parishioners and we can start talking about reducing the risk of dementia as well and do brain health activities?” So that is my reason for it, and Alex, and it started with just, I said, “I just want to work with six churches. Let me see how this work.” Three and a half years later, I’m at 63 churches, 14 states.
Fayron: So it really just shows, and I’m very excited because it shows that many of our faith leaders, people didn’t think they were concerned about health and really getting on board and seeing what they can do, particularly with dementia, but they are. They just need to know the statistics. They need to know the truth. They need to know what’s happening to their parishioners, their congregation, the community. Once they realize that, they want to make a difference.
Alex: Just sticking with you, Fayron, for a moment here, how do you get the in? Is that how you get, you go to the reverend or the head of the church and what do you say to them?
Fayron: I get the in all kind of ways, Alex, All kind of ways. So first of all, I would say it started off by me knowing somebody that knew a pastor. The neighbor was a pastor, and I’d be like, “You think they’ll give us their church? You think they’ll open up the church for us?” And so we started there. Then of course, I went to my own pastor, and then once we started doing it and people came, then it was the community saying, “I need you to meet my pastor.” Every church, we have to meet the senior pastor or senior faith leader, and I share the statistics. I am straight up. I give them the statistics, the alarming statistics, and they are so shocked, so shocked. That’s at every conversation I share, “These are the statistics, this is what’s going to happen by 2030, 2050. This is what they’re projecting.”
Alex: Projecting in terms of what?
Fayron: One of the key statistics I say is, “By 2030, nearly 40% of individuals that would be diagnosed with dementia would be Black or Latino.” That hits home ’cause less than 10 years away. Now they want to know, “Well, wait, what is this?” When I start describing what dementia is, then they start reflecting and thinking about their family member, their mom who may have died and they might not have cared for her or gave her the right support ’cause they didn’t know, or the uncle that they may have locked up in the room. These are our faith leaders that are sharing these stories with me.
Alex: Fayron, at the start of this, when we were talking about why you went into this, you also said that there’s this misperception that dementia was a disease for white people.
Alex: Is that what you’re also hearing when you’re talking with these faith communities?
Fayron: Yeah, so I’m the only one saying it, but when I say it, they just nod their head. Some people be scared to say that, but it’s the truth. This is how many of us, many people in my family, in my community, that’s what we were told because not that it didn’t exist, we didn’t know what it was, and that’s what it was. So when I say that, they’re like, “Yeah, we thought that too.”
Alex: Sticking with you while we’re on this thread, before we turn to Karen to hear about the peer intervention, what do you do in the churches? What are you doing in all these churches now? What’s the intervention? Is this Caregiving While Black?
Eric: Yeah, you said you equip them. What’s the equipment that you give them.
Alex: Yeah, what do you give them?
Fayron: Yeah. So no, this is, Caregiving While Black is a psychoeducation program online course, but the work with the churches is called Alter. This is actually, it’s a partnership that we do with our faith communities for two years. We have them select 16 initiatives that they’re going to work on implementing over this two-year period. We provide them a framework, come up with a timeline, a roadmap if we want to say that, and we coach them and guide them in implementing these activities. So many times we go out, and I’ll tell this to everybody, education is great, but we cannot stop at education. But that’s what has been happening. We stop at education, and then we lead many of our leaders and those in the community be like, “What do we do with this education.” Well, my Alter program shows them how to apply the education and create supportive services that can help their parishioners. We also address worship, which is a touchy topic ’cause I’m asking them to change and modify how they deliver worship experiences, worship services-
Alex: To accommodate the needs of persons with…
Eric: Can you give me an example of that?
Alex: Yeah, with dementia?
Fayron: Yeah. So an example would be shorten the time length, number one. [laughter] I start with that.
Eric: I did 12 years of Catholic school. I think I would agree with that too. [laughter]
Fayron: Yeah. Yeah, right? We have to follow that model. But before the pandemic, we would go to churches and we are sitting in there for three hours. There’s no way our families, not just those living with dementia, but caregivers can actually do that. So shorten the length, or they can do something online for six to 10 minutes. We have visual aids available, words to the hymns up. They can also have a high proportion of music, familiar prayers. So these are things that we already probably know in the literature, and I’ve just gathered it and put it in one spot to help guide our faith leaders when they do their worship. We also want to make sure we have ushers that have been trained to be in worship service so they can support these families as well. So if there is a “disruption,” quote, unquote, that they will be there to support them. So those are examples.
Alex: What are some of the other elements outside of the worship setting?
Fayron: So under support services?
Alex: Like advanced care planning. Yeah, exactly.
Fayron: Support services, we do memory cafes, respite programs, advanced care planning will come more under the education. So they can tailor different education things that they will need to provide within their church to support these families. This is where advanced care planning comes in, is where we introduce them to persons like Dr. Moss and others that are offering advanced care planning so then they can learn about it and be able to help and support their parishioners.
Eric: Are you working with all different types of denominations, faith backgrounds, or is it a particular faith community that you work with?
Fayron: Great question. So we’re open to working with where Black people worship. So if it’s a place of worship for them, we are there. But so far, over these three-and-a-half years, it’s predominantly have been Christian denominations.
Eric: If our listeners want to find out more about Alter, should they go to the article you sent us or is there some website for this?
Fayron: Yeah, it’s alterdementia.com, and that’s Alter with a E.
Fayron: So not going to the altar.
Eric: Yeah, I like it.
Alex: I also wonder, it brings up the question about is there a attention between creating something that applies even in this, a faith community, Black individuals tailoring it specifically for a particular community or even a group of individuals, let’s say LGBTQ population within a particular faith community versus creating something that applies to a larger group, but still somewhat tailored to let’s say, the Black religious community. Is that a tension that you feel, or is there one?
Fayron: You say tension?
Alex: Yeah, this idea of, in one hand, historically we created caregiver programs thinking, oh, it should apply to everybody. When in truth, what I’m learning is, no, it doesn’t for all of these great reasons, but you can also create something that’s applies just to that one person that’s sitting in front of you really, really well. But it may not apply to a larger group than that individual. Is that something that you see in your research and the work that you do? Or am I just making that up?
Fayron: No, no, no. I think so even within our framework, we have to tailor it for each denomination. So our framework is pretty general. It’s our choice and our community advisory board choice to just focus on the African American community, but within the community, each denomination, each faith community we to go to we have to tailor it, ’cause they come with their own different culture, and we are open to also working with other groups. We’ve had some conversations already of how they can take some of this and apply it as well and see what resonates with them. So the things that we have in our Altar program, it has been through our community advisory board. It has been through the families that we work with to say that, “Hey, this resonates with them,” and so that’s important. If we go to another community, another group, we want to make sure some of the recommended activities would resonate with them.
Alex: Karen, I want to turn to you now and ask about your-
Fayron: Yes. Take the pressure off from me.
Alex: One of the major threads that runs through your work, and this is brilliant, I love this, is the idea of working with former caregivers of persons with dementia and training them to be mentors to current caregivers of people with dementia. I wonder if you could say more about how you came to this idea and why you think this works.
Karen: So with my very first study, one of the things I found after meeting people in the community, people knew about the work that I was doing. Once I had IRB approval, circle back to them, loved one passed away. I thought, “Shoot, I should have been able to use them for my research.” It was a dissertation needed to get out and done. I thought, “In my next study, I’m going to be able to capture their perspectives. I’m going to make room for these former caregivers because they have this wealth of experience that I need to be able to capture.” So when I got to my faculty position at Ohio State, I was able to execute this then dream study where we had these four groups, our current and former caregivers who all self-identified as being lower socioeconomic status healthcare providers and community leaders, and learned so much from them all around the needs of African American and Black people living with dementia and their caregivers around advanced care planning, barriers, facilitators wanted their ideas on if we designed an intervention, what should this look like?
Now, these data were all collected during the pandemic, and we learned from our former caregivers is that they want to give back. They want to continue to be engaged in research. Problem, though, is that the majority of caregiving research that’s out there are for people who are currently caregiving. So we have a tendency, I think, to hang our caregivers out to dry once they are no longer considered, quote, unquote, “caregivers.” So I wanted to be able to include them and because of what they shared their needs are and how they were able to tell their own stories, I thought, “Well, why not continue to include them?” So Pair 2 Care does just that, includes our former caregivers as those mentors to mentor people who are currently caregiving. This is what they told us they want to do, and so this is what we’re allowing them to do with this intervention, and I’m extremely thrilled about it.
Alex: That’s great. So it came from your research, from the people, from themselves, from the caregivers, this idea of generativity-
Alex: … wanting to give back.
Alex: So a little bit more about why this works, what do they have to share, what does it do for, not just for the caregivers who are current caregivers, but also for those former caregivers?
Karen: Yeah. So we have yet to see, because the study is still ongoing what it will truly do for our mentees, those who are currently caregiving. In the future, we hope to be able to capture the perspectives of our former caregivers as well ’cause we know that there will be benefits, there’s a high chance that there will be benefits for our mentors as well as former caregivers, and just want to be able to capture that as well. So look forward to future studies and hopefully more individuals as we’re starting to see now be able to include the perspectives of these very, very important group of individuals that we really need to tap into.
Alex: Sticking with this for a moment here, I remember, Karen, we were fortunate to have Karen Moss here the entire day, and she started off the day giving a Work in Progress presentation to our group who interrupted because that’s what we do in Work in Progress. I told her no one’s ever made it-
Karen: It was great. It was great.
Alex: She was giving all of their slides and our Work in Progress said, “You’re no different.” But one of the things that you talked about was being with this caregiver and doing an interview, it was over two hours and she was just bawling and talking with you. I wonder if you could just recreate that for our listeners.
Karen: Yeah. So this was of course, pre-pandemic and having conversations. One of the things I pride myself on prior to the pandemic is that I would never have these challenging conversations with folks over Zoom or over the phone, pandemic has changed all of that. But what I do miss about an aspect of this is sitting around the kitchen table with individuals, these caregivers and them sharing their stories. So when we think about, at the time, it was folks who are currently caregiving and the way they shared so openly about the challenges, the struggles that they experienced as African American and Black dementia family caregivers in the midst of tears.
Sometimes bawling, audibly bawling on the recorders and asking me not to stop the recording. “No, I do want to continue. I want this story to be shared. No one asked me about these things. No, this is good. This is therapeutic.” So being able to hear their stories, be able to capture what their needs are and hear that heart-to-heart, hear the struggle, and be able to provide a program, not that Dr. Moss by herself came up with, but hearing from them what their needs are and being able to offer it back to them and hopefully be able to make an impact in their lives.
Alex: I think it was Carol Levine who wrote a New England Journal perspective as a caregiver saying, “Nobody’s listening. Isn’t anybody listening?” Right? I love that. Here you are listening, listening to these former caregivers, these bereaved caregivers tell their stories and giving them an opportunity to give back and contribute.
Karen: Yeah. I think one of the similar-
Fayron: Alex, I have a-
Karen: Sorry, I’ll just say one thing quick, Fayron. I think one of the similar threads between the work that I do, the work Fayron and others do as well, is that we do get to listen. We get to listen to the stories of people that they share with us, and when we act on it, we get to see the outcome of it. It’s one thing to hear people share their stories and just let it sit and do nothing with it, but be able to offer help through our research. That is what drives the work that we do. That is where we see the outcomes and where we want to continue to push this agenda forward to be able to provide the support that is needed, so much needed in this community.
Fayron: Yeah, my dog started barking and sorry about that, y’all. I was wanting to ask Karen a question, and I wanted to see, ’cause I had this in my research. Pre-pandemic, where a lot of your interviews held at the kitchen table?
Karen: Yeah, so they were all in person. Either-
Fayron: But at the kitchen table?
Karen: Yeah, well-
Fayron: That’s what I’m wondering.
Karen: Yeah, Well, let me think about that. Kitchen table living room.
Fayron: So it’s something symbolic. I think through my work, most of my research interviews were held at the kitchen table. I think there’s something symbolic about the history of the Black family, that kitchen table. This is where meetings happen at that kitchen table. This is where discussions occur, people make decisions at that kitchen table. So when you brought that up, I want to just highlight that because in my work and with my team, we talk about that kitchen table.
Karen: Yeah. Yeah, I’ll say too, that I ate grilled cheese sandwiches, had coffee with strangers. My mother always taught me, “Don’t eat from strangers.” I’m like, “I’m eating and this is good.” These individuals oftentimes did not want the conversation to end, two hours in, they still, “Don’t…” One even I remember distinctly saying to me, “Don’t turn off the recorder. No, no, no.” It was just wonderful, wonderful to be able to hear. I felt really honored to be able to listen to their stories.
Eric: One question I have for both of you, I’m going to start with Karen. You both are nurse leaders who are doing this unique work out there. Does the nursing background give you a particular frame of reference or help you in a way that other disciplines may not see?
Karen: Absolutely. I would say, 100% nursing has… my career as a nurse in the ICU and in a few other places has helped to shape this question. I think about the days in ICU when I saw families struggling, patients suffering towards really poor outcomes for the person in the bed, for what the family members were going through. I thought about, “Oh, my gosh, we need to do something about this.” This is where the question and the fascination around death and dying started. Then fast-forward thinking about my research, “How am I going to address this?” I felt like the ICU was too late. I needed to reach these people before that, and so hence, I went to the community and have never looked back.
Eric: It’s interesting, in the ICU, you become a non-family member caregiver, and in the hospital and sometimes even at home, that brings that unique perspective to nursing.
Eric: So Fayron – How about for you? Does it give you a different perspective?
Fayron: Yeah. Well, I think my perspective will be similar, but I’m just going to add to it. Of course, I’m just going to lay this out here that we are nurses, so we are pro-nursing just for the listeners to know that. But I think that nursing, we look at things holistically, and so we just don’t focus just on that patient. We’re looking at the patient, the family, also the environment of this family and for that patient. So all of that is in our treatment, our plan of care to help this person get better. I think when we look at other disciplines and my peers, they may come in, they may just look at one specific thing.
“What is wrong, just right here?” Or for a social worker, “Where are we going to discharge them to?” But we’re looking at it all. Those skills that I had from the clinical setting has actually transferred over to my research. I think it has helped me to be able to look at that family unit, look at the contextual environment, and how does that play on the well-being of the individual living with dementia, on the caregiver, on others as part of the family? So yay for nursing. I just think nurses, I think we bring so much to the table and all research teams should have a nurse on their team.
Eric: We are also going to… ’cause Karen, you actually wrote a brilliant article that I read last night about the role of nursing and dermatological nursing. Any additional thoughts about the role of nursing in dementia care, in research or disparities?
Karen: Yeah. So particularly as we think about the way the older adult population is growing in this country, the need for gerontological nurses is great. The need for our older adults who are living into even older ages is massive, and we have to be able to meet and respond to those needs. So the needs around serious illness care, multiple chronic conditions, for example, dementia, of course, being top of mind for me because of the work that I do. Nurses, like Fayron said, being at the forefront of helping and supporting being champions of reducing health disparities that exist in this space is the only way to go. How do we not focus our efforts on better care for all people? Let’s leave no one behind. As we continue to move forward with this and help our caregivers be able to be better caregivers and emerge from their caregiving role and be able to go on and continue to live better lives and not continue to hang them out to dry as they continue to emerge into older adulthood themselves if they haven’t already.
Alex: Okay. I got one last question for both of you. If you had a magic wand, you could change one thing around this issue, what would it be? Fayron.
Fayron: Oh, no, not me first.
Alex: I was going to say Fayron, you can go second. Karen.
Karen: So I would say to be able to get all of our caregivers and persons living with dementia, engaged in advanced care planning thinking, having conversations, documenting wishes beforehand, and hopefully improving end-of-life outcomes on the backside of things; not just for the person living with dementia in this space, but also for the caregivers and impacting in a positive way how they plan for their own end of life.
Fayron: Yeah. So mine, I don’t know if it’s going to come out so beautiful, but mine would be is that all caregivers from every race, ethnic background, also geographic region, rural, urban, suburban, would have access to supportive services and have access to resources readily. It would be at their fingertips, and they won’t be looking for it and hunting for something that will be able to support them.
Eric: Well said.
And mine, ’cause I want to give one too, mine is I would like more tambourine in everybody’s life.
Karen: You got it.
Alex: And with that…
Eric: That was great.
Alex: With that, thank you, Fayron. Thank you, Karen, for joining us for the GeriPal Podcast.
Karen: Thank you for having us.
Fayron: Thank you. Thank you.
Eric: And to all of our listeners, thank you for your support.