Dannelle speaks with Shanae Rhodes about how she was introduced to dementia care as a nurse and her research findings for both African American caregivers and dementia caregivers in general. You’ll learn some tangible steps to providing better care for dementia patients and better self-care practices as care partners.
“I love the saying that if you see something wrong, but you don’t do anything about it, you’re just as guilty as the person who is causing the issue. And so, I feel like that’s the same thing in this situation is that if we just sit back and don’t do anything about it, we’re part of the problem, when we should be part of the solution.” – Shanae Rhodes
- 02:24 Shanae’s 3 core values and how they connect to her caregiving work
- 04:48 Shanae’s research studies on caregiving experiences of African American women
- 09:30 Dr. Woods-Giscombé’s study on the superwoman schema
- 14:38 Access to training for dementia caregivers
- 16:44 How to provide resources for under-resourced dementia caregivers
- 19:11 How to advocate for people with dementia and their caregivers
- 21:40 What Shanae learned from patients that she didn’t learn in nursing school
- 22:35 The impact of lack of dementia training on under-resourced communities
- 25:42 Other tips from Shanae on how to help caregivers
- 26:41 What Shanae is passionate about outside of caregiving
- In caring for a person with dementia, the frustrations of managing the disease understandably detract focus from connecting with our loved one as a person. Stay mindful to separate symptoms of the disease from the value of the person we care for. It’s an essential part of how we maintain compassion.
- In under-resourced communities, underlying physical, economic, accessibility, environmental, and other social conditions, exacerbate the physical and mental impact for both caregivers, and those we care for. If you’re an advocate, educator, or someone who supports care partners, include targeted resources and educational tools for these communities as a part of everyday programs.
- For those who work in a medical or social services setting, ask your administrators to bring a dementia program to train staff in compassionate, evidence-based dementia care. Patients with dementia are often seen and treated for some other condition without recognition that the treatment plan is influenced by symptoms and challenges associated with neurodegenerative disease. So, it makes sense to include dementia care as part of the core staff competencies.
- If you’re involved with a mobile clinic, going to rural areas, consider providing educational tools for dementia caregivers and patients where resources are harder to access.
- Educate yourself about dementia and how we can create more dementia friendly communities. Many caregivers avoid going to public spaces with a loved one because they just don’t wanna deal with negative reactions when a loved one says or does something as a result of brain changes. Resources like TeepaSnow.com, The Alzheimer’s Association and Dementia Friendly America at dfamerica.org, are a great place to start.
Resources Mentioned in the Episode
- Dr. Woods-Giscombé study: Superwoman Schema: African American Women’s Views on Stress, Strength, and Health
- Website: My Sister’s Keeper
- Instagram: @msk_foundation4women
- LinkedIn: Shanae Rhodes
- Help for Caregivers of Family Members with Dementia or Alzheimer’s
- Caregiver’s Guide to Understanding Dementia Behaviors
- Looking After Someone with Dementia (NHS guide)
- Alzheimer’s and Dementia Care: Help for Family Caregivers
- Alzheimer’s and Dementia Care: Tips for Daily Tasks
- More about VR use in dementia care
- The Alzheimer’s Association
- Dementia Friendly America
About Shanae Rhodes
Shanae Rhodes a Registered Nurse specializing in adult care. As a student researcher and founder of My Sister’s Keeper, a virtual health-education platform dedicated to women of color, Shanae is committed to a career in community service and research that advocates for social justice for underserved and ethnically marginalized communities. Shanae’s current research is focused on gaining a more in-depth understanding of the experience of African American women who are dementia caregivers and their mental health.
[00:00:06] Shanae: I love the saying that if you see something wrong, but you don’t do anything about it, you’re just as guilty as the person who is causing the issue. And so, I feel like that’s the same thing in this situation is that if we just sit back and don’t do anything about it, we’re part of the problem, when we should be part of the solution.
[00:00:28] Dannelle (Recorded): Hello and welcome to The Caregiving Soul! The Caregiving Soul podcast is a series of conversations about what it’s like to care for loved ones in need and how we can better navigate the relationship and the physical, emotional, and logistical complications we encounter as partners in care.
[00:00:49] I’m your host, Dannelle LeBlanc.
[00:00:54] [Music Ends]
[00:00:54] Today, we’re speaking with Shanae Rhodes. She’s a registered nurse specializing in adult care. As a student researcher and founder of My Sister’s Keeper, a virtual health education platform dedicated to women of color, Shanae is committed to a career in community service, and research that advocates for social justice for underserved and ethnically marginalized communities. Shanae’s current research is focused on gaining a more in depth understanding of the experience of African American women who are dementia caregivers and their mental health.
[00:01:35] Welcome to Shanae Rhodes!
[00:01:40] [Music Ends]
[00:01:40] Dannelle: Shanae Rhodes!
[00:01:41] Shanae: [Laughs]
[00:01:42] Dannelle: Welcome to The Caregiving Soul. How are you?
[00:01:46] Shanae: I’m doing well. I’m happy to be here. I’m so thankful for the invite, and I’m looking forward to our discussion.
[00:01:54] Dannelle: Oh, absolutely. You have been on my mind ever since I joined your caregiving support community, this community of wonderful women and men and the presentation that you invited us to, “Cultivating the Caregiver”, and just the whole atmosphere, even though it was via video, was palpable. I could feel it. I could see it on people’s faces. Can you tell us, just to start with, what your three core values are and how they connect to that work?
[00:02:33] Shanae: Yes ma’am, I sure will. Just to give you a little bit of background, before I talk about the three core values, before I started going into this work as a nurse, I actually got to experience caregiving from an outside perspective. My grandmother was a caregiver for the both of her parents. My mom was a caregiver for her mother, my grandmother. And so, I have that double connection. I have that connection from a personal experience, as well as from a professional experience.
[00:03:01] Coming from my personal experience, three core values that I carry with me that flow over into my professional also, I would have to say is compassion, the reason being is because my grandmother provided care for the family, not just her parents, but she was kind of like the go to person for everyone. And she did it with her heart, her whole heart. And so, my grandmother being an example is what has inspired me to be that kind of caregiver professionally.
[00:03:29] I will also say secondly would be persistence and that’s, I wanna say more specifically in advocating. My grandmother, she experienced the, I would say mistreatment, being a woman of color. And she also suffered from the impact of health disparities. And I saw this even before I even entered into the health profession. And so, it really has inspired me to be persistent in advocating for my patients, not just patients of color, but patients who maybe, you know, can’t speak up for themselves or who don’t understand enough about medical terminology or, you know, they want to ask questions and they don’t know how.
[00:04:08] And then I would say third would be patience. Going back to my grandmother, you know, she really showed me how to be patient and how to empathize with others. I think about interviews that I had with caregivers and that has come up a lot is to have patience. And to remember that this could be us one day, we could be the ones that require care. Those would be my three core values that I mainly stand on.
[00:04:32] Dannelle: And I think the fact that they come from your own personal experience and that, that then ties into the professional work that you do is why it comes across as being so authentic. You’re doing it with your whole heart. You’ve done some work with dementia care caregivers specifically. I believe you did a preliminary study. Can you tell us a little bit about your work and what you learned?
[00:05:01] Shanae: I did a total of 11 interviews with African American women who were providing care for a loved one living with dementia. The majority of them were caring for their parents. So, I did some interviews with these women to just explore what their experiences are like as a caregiver. One thing that came up across the interviews, specifically talking about if they believe that being an African American woman impacted the way that they provided care. And a lot of the women brought up slavery. And they talked about how that impacted the way that they care.
[00:05:39] And in that conversation also came up some information about feeling mistrust, and that is one of the reasons why they were hesitant to place their loved ones into a nursing home. Some were saying that the nursing homes weren’t really providing representation of other cultural groups. So that made them feel uncomfortable.
[00:06:01] I’m also excited about my next study, which is focusing on African American women caregivers of persons living with dementia, and really exploring and delving a little bit deeper into what it is like to be a caregiver, as an African American woman, of a person living with dementia and hoping from there to be able to work with these women as they identify weaknesses and strengths, to work together to help other women who are coming up as caregivers.
[00:6:29] Dannelle: That’s really interesting. I think there was a study done where they looked at dementia caregivers across the board and they found that African American caregivers coped better than their counterparts and attributed it to their faith. My personal theory is also that the experience of caregiving within African American families goes beyond the last 50, 60 years of where caregiving has become something that more people are experiencing because people are living longer.
[00:07:05] And because there are fewer caregivers available and the accelerating 85 plus population that requires care, versus the experience of African American families where we’ve had to be caregivers because we weren’t allowed in the hospital. [Laughs] So, if you’re not allowed in the hospital, guess what? Family caregiving is just a matter of course, it’s not a modern phenomenon within African American families. We’ve been doing it. Also not just caregiving within our own families, but for other people’s families. And it was also unpaid. [Laughs]
[00:07:51] Shanae: And that’s what came up in those interviews was exactly what you said was that during slavery, not only did the black or African woman have to take care of her family and her children, but she was also made to take care of her master’s children and the master’s family. So that caregiving is deeply embedded within the African American culture.
[00:08:17] And even though, you know, this has been some decades ago, the trickle-down effect and how it still is impactful. That was surprising to me. And not only was it surprising that it came up, I wouldn’t say it was surprising, but I was surprised at how many women brought that up regardless of age, because I did interview millennial caregivers as well as women that were like in their forties to sixties, I think was the oldest, to hear that this is something that still impacts African American women caregivers today was very interesting.
[00:08:49] And then exactly what you’re talking about is what my follow up study is gonna be, is looking at – I actually did a literature review and a lot of those studies that said that African American women do better psychologically were quantitative studies and they had a very small percentage of blacks that were part of as participants. When you looked at qualitative studies, you saw that – not saying that they’re not coping better – but it was a different way of coping, but also there was types of coping that have been suggestive of, I guess, emotion focused coping, which they said can lead to poor physical health, cuz it’s almost like you’re suppressing it.
[00:09:30] So Dr. Woods-Giscombé did a study, it wasn’t on caregivers, it was just on African American women and she developed a superwoman schema. And there were a lot of things that came up including obligation to care, the historical aspects of slavery came up as well. And there was also putting self-care to the side, suppression of emotions, so on and so forth. And it was interesting because I wasn’t using her framework when I was doing my qualitative interviews as a guide. But as I was going through and being knowledgeable of her framework, I was like, “oh my gosh, some of these same things are coming up”. Reliance on God – I forgot to mention that one. That one came up, putting self-care to the side, which I think is caregivers in general. But it was very interesting.
[00:10:16] So, my study is actually looking at the relationship between caregiver burden, the superwoman framework, and seeing how that impacts their psychological health and to see is it something where we’re truly coping better? And if we are then how are we able to? And what are the reasons for us being able to cope better? And then if we aren’t, then why is it that this data is saying otherwise? And I know every woman’s story is different, but just speaking from a generalized perspective. Um, so that’s the next step of where I’m going with my study.
[00:10:53] Dannelle: That is going to be so interesting. And you know what? I think coping is the wrong word. I think it was, in those types of scenarios that you’re describing, it’s surviving. It’s the ability to survive.
[00:11:06] Shanae: Mm-hmm.
[00:11:07] Dannelle: And suppressing the emotions – the whole time you were describing this, I’m thinking, you know what, you know what this sounds like to me, Shanae?
[00:11:16] Shanae: What?
[00:11:17] Dannelle: this sounds to me – [Laughs]
[00:11:18] Shanae: [Laughs]
[00:11:19] Dannelle: [Laughs] This sounds to me like the strong black woman thing.
[00:11:26] Shanae: Yep.
[00:11:26] Dannelle: Right?
[00:11:26] Shanae: Yep.
[00:11:27] Dannelle: The strong black woman and this idea that – how come it’s just black women?
[00:11:33] Shanae: [Laughs]
[00:11:34] Dannelle: And it’s because of this caregiver burden, this –
[00:40:10] Shanae: mm-hmm
[00:40:10] Dannelle: – weight that so many black women carry that it’s like, you just don’t have any choice. It becomes about survival. And it’s not something that is readily accepted as something that we can talk about to a general audience. And hopefully, you know, hopefully that’s changing because that experience is in so many ways consistent with the experience of caregivers in general. We get it, we get it. We can all understand, regardless of where we come from, we can all understand how hard that is.
[00:12:18] Shanae: Most definitely. And it is something, because Dr. Giscombé actually talks about the strong black woman and that’s where the superwoman schema was birthed from. She was saying, but it’s not only the expectations that we feel society weighs on us, but also the expectations within our own culture.
[00:12:37] Dannelle: Mm-hmm
[00:12:38] Shanae: And I will say, I did learn, you know, you don’t hear that term anywhere else specifically, but in talking to some of my friends, there is a term in the Latino culture or la cultura Latina, which is ” Marianismo”, I think is what it’s called. And it’s kind of like the woman has to be like the Virgin Mary. She has to be perfect, quiet, docile, be able to handle whatever’s thrown her way. So, I think, you know, in different cultures, there are other expectations that may be similar to the strong black woman. But at the same time, we can’t put it all in one box. You know, it’s all different. There’s so many different contexts.
[00:13:18] Dannelle: I think it had come up in that discussion we had before some of the concerns that African American families had in potentially doing a move to assisted living or memory care because of the potential environment and that impacting the type of care that they might receive. And I thought about it again, cuz I came across this article about, it was a piece of technology.
[00:13:48] It was VR being used in memory care that allowed the residents to reminisce about the past. That would be like an example where we make an assumption about what the past looked like for someone who is say currently right now in their eighties or nineties. And reminiscing about what the past was like when they were in their twenties or thirties would be a completely different experience for an older African American than it would be for others. Having that kind of awareness, I think is so important. It’s like built into the language that we’re using, an assumption that we’re not talking about an older person of color. How we talk about that in these discussions is so important.
[00:14:38] So, you know, dementia care is oftentimes different in under-resourced communities, not just from a caregiving standpoint, but from this medical standpoint and the mistrust. What else did you learn?
[00:14:54] Shanae: I think overall, regardless of race, what I’ve heard from different caregivers, cuz I have been a part of other people’s studies where they were focusing on caregivers, in general, of persons living with dementia, regardless of race or gender. And I think something that is common is coming across medical staff who do not have the appropriate training to know how to care for a person living with dementia and their family members.
[00:15:21] So that is a common problem across the board. There are some programs that are trying to improve that in the medical community. I will be honest, as a nurse, any given day we were taking care of someone with dementia, however, that was never a specific type of training that we received. It’s not common to get that kind of training.
[00:15:42] I happened to be blessed because while I was at UT Health Science Center, my friend actually invited me to attend this caregiver program. We did a dementia simulation. We attended courses with caregivers. And then we also met at the end with a person living with dementia and their caregiver to learn from them. And so that was wonderful training. And that’s something that you just don’t hear about with medical professionals.
[00:16:08] I think that that is one of the issues, but then it goes a little bit deeper when you start to focus on under-resourced persons because they don’t have access on top of not having staff that are adequately trained. They don’t have access. They don’t have knowledge that these programs exist. They sometimes don’t have the ability to get to these programs. Sometimes they’re out in rural areas and you don’t have that access. You’re too far away from the type of programs that are out there and available for persons living with dementia and their caregivers and healthcare staff.
[00:16:43] Dannelle: That’s crazy to me. What can we do? What suggestions do you have about how to better reach these under-resourced dementia caregivers who don’t have knowledge about that the resources exist? What can we do?
[00:17:00] Shanae: So, I think doing what you’re doing now, having podcasts like this, virtual sessions that are free, such as My Sister’s Keeper, dedicated towards topics like this to provide information, but then you still have the population that may not have access to a computer. They might not have the ability to access technology to hear podcasts. A lot of people have cell phones now, but that’s not necessarily always the case.
[00:17:27] I have a public health kind of mind, even though I’m a nurse [Laughs] and I think, you know, part of nursing is public health, to be honest, but I feel that whenever someone does not have access, it’s our responsibility to go to them. So that could be holding information sessions, community fairs, at whatever’s there in their community. You know, whether it’s a community center, partnering with churches, partnering with the medical clinics that are out there.
[00:17:52] I know that some institutions have mobile clinics – getting your mobile clinics to go out there, and, you know, on top of doing physical exams at that time, educate. Educate the caregivers and the persons living with dementia on different programs that are available for them, the resources. Provide a resource list. Connect with their local library to let them know that they can go to the library and access this information.
[00:18:17] But I think that the onus lies on us, that we need to get out and we need to let people know what’s out there and to let them know that we are here for them, we’re here to help them. And I feel like in order for us to make a huge change, we all have to work in this collaborative effort. The community as well as the medical societies, we’ve got to come together and make sure that under-resourced communities have access. Otherwise, we’re just allowing the health disparities to continue on and we’re actually contributing to it.
[00:18:43] I love the saying that if you see something wrong, but you don’t do anything about it, you’re just as guilty as a person who is causing an issue. And so, I feel like that’s the same thing in this situation is that if we just sit back and don’t do anything about it, we’re part of the problem when we should be part of the solution.
[00:19:10] Dannelle: Absolutely, and we can all contribute in different ways. So, wherever you are, whoever you are, if you’re an advocate, if you’re a healthcare professional, doesn’t mean that you have to start a My Sister’s Keeper, doesn’t mean that you have to [Laughs] –
[00:19:28] Shanae: [Laughs]
[00:19:29] Dannelle: – ‘cause that’s a lot. I mean, it’s an amazing community, amazing support community. It doesn’t mean that everyone has the talent, and time resource to dedicate to a community like that. You don’t have to start a podcast. It could just be that you ask a question at your place of work. How are we reaching family caregivers who are caring for a loved one with dementia? What are we doing to make sure that we are connecting those families with resources that could help?
[00:20:05] Shanae: I love what you said. You said, “just ask a question” and you brought something to my mind. When I was going through that dementia training program, the most impactful part to me was sitting there with the person living with dementia and talking with them and asking questions. And they were educating me on what it was like to live with dementia. How could I improve in my nursing care as well as their caregiver?
[00:20:33] Sometimes, like you’re saying it’s as simple as sitting down and having that conversation and then asking, “how can I help?” When you ask that question just make sure you’re willing to help [Laughs] if they ask you for help, but sitting down and having a conversation sometimes will enlighten you in ways that no other method will, but it also shows the person and their loved one that you care. You care enough to sit down and to learn about what life is like.
[00:21:03] I will say with all the nursing training I had, and of course I’m always learning, so I’m not a know-it-all, by any means, I’m always learning. But, let me tell you it really showed me that I did not know nearly as much as I thought I knew about dementia, also from the caregiver’s perspective too. I really didn’t know. And it taught me a whole lot to the point where I am more sensitive when I’m caring for someone living with dementia, I’m more sensitive to their loved one who is their caregiver. That is one of the most powerful tools is to sit down and to have that conversation.
[00:21:40] Dannelle: Can you share with us one of the things that you learned from sitting down with a dementia patient and their caregiver?
[00:21:50] Shanae: When you’re caring for the person, this may sound silly, but the greatest lesson that I learned, when I was sitting there with the persons living with dementia is they are not their disease. And I think too often in the medical community, we identify people as the disease and sitting there having those conversations, you know, the person telling us what their favorite food is, cracking jokes with us, it reminded me that, wait a minute, he’s a human being. She’s a human being. [Laughs] This is a disease that they’re living with. It’s not them. It sounds silly. Like you should know that, but it wasn’t until – for me – I actually sat down and realized, “oh my gosh, I have been focusing so much on the disease and not on the person”.
[00:22:35] Dannelle: I’m also wondering, Shanae, what happens particularly in under-resourced communities, when dementia is not addressed?
[00:22:46] Shanae: There’s a lot of research out there that is focused on caregivers who are underserved, ethnic minorities, as well as those who live in rural areas. And it has consistently shown that they have poor health outcomes, as caregivers, when compared to other racial groups. And so, when you don’t have access and/or you don’t have medical staff that are adequately trained, then you’re going to further exacerbate the issues that have been persisting for years. It’s going to impact the health. It’s gonna impact the mental health. It’s gonna impact the physical health, even though not having this kind of staff that are adequately trained impacts everyone.
[00:23:29] It’s not just under-resourced, but everyone, but those who are under-resourced are almost doubly or sometimes even triply (if that’s a word) [Laughs] you know, the hit is tripled in those cases. If you have someone that doesn’t have food, but they have the ability to go and get it, they’re able to go and get it. But if you have someone that doesn’t have food, they don’t have the ability to get it, and now they’re hurt, their house has burned down, then they’re gonna suffer even more because they’ve lost everything.
[00:23:58] So it’s the same kind of situation when you’re dealing with under-resourced. And again, not just, you know, ethnic minorities, but also those with low income, those who are in rural areas. It has been shown time and time again, not just in the population of persons living with dementia, but across all populations in general.
[00:24:16] And we know from caregivers who I’ve interviewed, with your own personal experience Miss Dannelle, as well, that caregiving has its challenges. So, when you already have challenges on top of inadequate access, mistrust, so on and so forth, that’s going to continue to worsen the health outcomes of the persons that are caring for the person living with dementia, as well as the person living with dementia.
[00:24:47] Dannelle: And in turn impact the health of the community in which they live, indirectly. Cuz when you were talking about describing how your grandmother was kind of this, you know, central figure within your family, that extends to the community. Cuz I bet you, everybody in the community knew who your grandmother was. I know everybody in the community knew who my grandmother was.
[00:25:13] Shanae: [Laughs]
[00:25:15] Dannelle: You know?
[00:25:16] Shanae: [Laughs]
[00:25:17] Dannelle: They’re known. Because they are a caregiver for the community as well, and setting an example. And then that in turn our communities, regardless of whether or not it’s an underserved community or not, we may not see the direct connection, but it impacts the society that we all live in as a whole. Shanae, what else? What else do we need to know in order to do better?
[00:25:48] Shanae: I would say first, like Danielle said earlier, you don’t have to start a group. You don’t have to do a podcast. It’s just taking that first small step, you know? And honestly, I know some people say, “oh, well you’re a nurse”. No, no, no. [Laughs] I had to take a small step too. [Laughs] And my first small step was when my friend invited me to go to this dementia training and I said yes. It’s made me a better person, a better nurse and not just in the medical setting, but in my community.
[00:26:14] If I go to the grocery store and I see someone who’s living with dementia, I know how to be of assistance if needed, but I’m not afraid to ask if they need help. If it seems as though they need help, that is. But also taking the time to sit down and to talk with people who actually are experiencing it, I think is the best, best way to learn.
[00:26:38] Dannelle: I agree 100%. Outside of caregiving, what’s something you’re also passionate about?
[00:26:47] Shanae: [Laughs] Oh gosh. Okay. I’m passionate about a lot of things. I would say that, well, of course my family, but I’m also very passionate about women’s health in general. I am focusing my work on empowering women to embrace having better health and advocating for themselves, helping to develop different programs. And again, sitting down and talking to these women and learning because one woman’s experience is not every woman’s experience. So, engaging in that. And I love nature. I like to go outside. [Laughs]
[00:27:26] Dannelle: You’re such a beautiful person.
[00:27:38] Shanae: Aww.
[00:27:28] Dannelle: I’m so glad to see you again. Thank you so much for joining me today.
[00:27:33] Shanae: Thank you for having me. I really enjoyed myself and I hope I said something that you know is helpful to someone out there. And thank you again for having me.
[00:27:45] Dannelle (Recorded): Thank you for joining our conversation with Shanae. Many of us have some kind of subconscious imprint of what caregiving looks like from childhood. Growing up, my mother always emphasized the importance of family, and in particular, I recall that whenever there was a family reunion or gathering, she’d make a point of taking my sisters and I to greet each and every elder in the family who was present. She’d lead us to where they sat or to the bed where they lay resting, and would remind us who they were. We had a really large family and she’d sit and talk, ask about their health, bring a plate of food. If an elder happened to say something that didn’t make sense, she’d just nod and smile. So, the core lesson we learned was that caregiving was about kindness.
[00:28:44] For more information on Shanae and My Sister’s Keeper, check out our show notes.
[00:28:51] Every episode of The Caregiving Soul has a page on empoweredus.org, where you can find the extended show notes – including tips and takeaways, transcripts, and relevant resource links.
[00:29:07] If you’d like to share your own tips related to this topic or connect with us, visit the Empowered Us Contact page or reach out to us on our social channels.
[00:29:19] The Caregiving Soul is an Empowered Us Original presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to this show wherever you get your podcasts.
[00:29:37] And remember, the right care includes care for you.
[00:29:48] [Music Ends]
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