Much of the research on dementia in the United States has overlooked African Americans, but the prevalence of dementia in this population is more widespread than you might think. PhD candidate Kalisha Bonds is doing a deep dive into the subject as a student at Oregon Health & Sciences University (OHSU). Her research is focused on decision-making and the use of formal medical care by African Americans with dementia and their care partners. Kalisha tells us how being raised by her grandmother inspired her career path and what she’s uncovered so far in her research. She tells us how she finds research participants in the Portland area, and how the culture compares with the rural Tennessee town where she was raised. She also defines a word you’ll find hard to forget: dyad. Kalisha Bonds, MSN, PMHN-BC, is a Ph.D. candidate in the School of Nursing at OHSU.

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OHSU Profile of Kalisha Bonds

Also mentioned in the interview:
“Formal Service Use by African American Individuals with Dementia and Their Caregivers: An Integrative Review” – Journal of Gerontological Nursing (K. Bonds and KS Lyons)
Medical Apartheid (Harriet A. Washington)
Alzheimer’s Association

Contact Kalisha: bondsk@ohsu.edu
Connect on Twitter: @future_drbonds
Kalisha on Facebook

 

INTERVIEW TRANSCRIPT:

[SOUND BITE / INTRO / SPONSOR INSERT]

JANA:  You’ve probably heard the statistics: in the United States, a little more than five and a half million people are living with dementia. Alzheimer’s disease accounts for about 60-70% of these cases, followed by vascular dementias. But it may come as a surprise to learn that African Americans have a greater risk of dementia than White and non-White Hispanic populations. In fact, most of the research on dementia has overlooked African Americans and the diversity of the overall African American population. Well, one researcher who is doing a deep dive into this subject for her dissertation is Kalisha Bonds. Kalisha is a PhD candidate at Oregon Health and Sciences University, and she joins us from Portland, Oregon to share her work. Kalisha welcome to The Agewyz Podcast.

KALISHA:  Oh, thank you. Thank you for having me.

JANA:  You sound like you have a Southern accent, so I would love to know where you grew up.

KALISHA:  Oh, I grew up in rural West Tennessee, in a small town called Trezevant, Tennessee. And some people in Tennessee don’t even know of it, but it’s a T-R-E-Z-E-V-A-N-T. The population is about 800 people.

JANA:  And you said that’s in West Texas or Tennessee?

KALISHA:  West Tennessee.

JANA:  Oh, West Tennessee. Okay. I was really sorry to read about your mom’s death, which you shared with me. And I understand that you were raised by your grandmother. I wonder if you could talk a little bit about how being raised by your grandmother affected your attitude toward older adults.

KALISHA:  Oh, I think it has influenced my love for older adults.  My aunt often says my grandmother is my best friend.  And even though that wasn’t true early and growing up, you know, having that large generational gap and trying to explain boys and dating and things like that, I can definitely say, at least say in my mid-30s, that my grandmother is my best friend. I try to call her every morning. We talk about the weather, and the family… you know, she just is a breath of fresh air and I truly love her and the wisdom that she’s giving me. And so because of that, I value older adults and their stories and their wisdom and their life experience. And so I’ve always felt really comfortable being around older adults because for as long as I can remember, I’ve always been raised by my grandmother. I’ve always been in her presence. And so, you know, sometimes in Nursing school people would get nervous or anxious about having to be– like we learned how to give baths in the nursing home, but that didn’t bother me because again, I was used to being around older adults. We lived in a community with predominantly older African American adults and I loved every minute of it. That was my norm. And so, yeah, I think it is part of the reason.

KALISHA:  And then in my career, as a Psych consult in long-term care and nursing facilities, it started to bother me when I would meet clients with dementia or their families weren’t really sure how to navigate this disease process because I loved hearing their stories. Even if they were wrong, just having them share what was going on or from their point of view, even when dementia has stolen part of their personality or some of the story it was just nice to give them time to talk, to allow them to speak to let their voice still be heard.

JANA:  How old is your grandmother now? And does she have dementia?

KALISHA:  She is 84. She does not have dementia, and she would rebuke you in the name of Jesus if you said she had dementia. [laughter] I do a memory test, usually a MoCA on her — which is the Montreal Cognitive Assessment— I try to do a test on her at least once a year just to kind of gauge it. She has become a little more repetitive in her speech. Part of that’s because she’s nosy. I hope I don’t get in trouble for saying that.

JANA:  I don’t think she’s going to hear this.

KALISHA:  I don’t think so. You know, she likes to repeat stories that she’s heard, but then it worries me that she’s kind of just saying the same thing. So there is probably some normal kind of aging, memory impairment that’s been associated with aging. My aunt lives with her and notices more firsthand how that’s happening. Again, me living in Portland, they still live in Tennessee… I only get home about once a year, so it’s hard to pick up on those subtle changes that someone living with her every day would be able to.

JANA:  I have to acknowledge my own ageism when I said she’s not going to hear this. Who’s to say that an 84-year-old doesn’t listen to a podcast? So, bad on me for saying that, right?

KALISHA:  Well, I can let you know she does not listen to podcasts.

JANA:  Okay. I’m in the clear, there.

KALISHA:  You’re in the clear. If I told her that I was on it, she might try and listen just for the sake of hearing her granddaughter on a podcast. But she normally doesn’t.

JANA:   Is there any dementia in your family?

KALISHA:  Not my immediate family. And so I have to give a little bit of a caveat with that. So my mother and father were not married when they had me, and so I really wasn’t raised with my father. I have, since getting older, met him and his mother. So I do know my grandmother on my dad’s side, but outside of my dad and his siblings and my grandmother, I don’t really know anymore. I do know my grandfather, but outside of that I don’t really know a lot of other siblings or my grandparents on my dad’s side. On my mom’s side and my grandmother that I’ve referenced, she had several siblings, but most of them died earlier. So usually with dementia you see that more commonly– I mean some statistics and some of the information will suggest that African Americans oftentimes will develop dementia at earlier ages. But I haven’t experienced that in my family. No, it was more just the experiences with working in a nursing home and seeing that more prevalent in the nursing home and wanting to figure out how to help these families and these caregivers kind of navigate this difficult disease– this difficult disease trajectory. Not necessarily my immediate family. No.

JANA:  Okay, but you’ve been around it. So we should share with listeners that Kalisha has an MS in Nursing and she’s a Board Certified Psychiatric Mental Health Nurse Practitioner. So, what inspired you to pursue a Phd? That’s a long road.

KALISHA:  Yes, and I keep saying after I get a degree, I’m never going back. I’m never going back. Clearly, I don’t follow my own “nevers”.  But I, again, was bothered. It seems like most nurses who pursue a PhD are bothered by something we see in clinical practice oftentimes. And so it bothered me that many of the family members, the older adults that were being admitted in the nursing home, had a diagnosis of dementia but had never tried any medication or didn’t really know what resources were available to them, or have lived years– I’m talking like three, four, five, 10 years with this disease, but never really knew what resources, what services were available, what they could do as a family, how to support one another, how to support this older adult, how to be there as a caregiver. Many times, once the older adults were placed in a nursing home, they blamed their family members for doing this, and so it created this rift in relationships. And so it was just kind of my job to come in and say, No, blame me. Tell them I’m the reason that they’re here, you know, speaking to the caregiver. Let them know it’s my fault. Blame the doctors and the nurses because they’ll forget about the fact that we told them to stay here, but they’ll remember that it was on you. You know, just really trying to be this liaison between family members and then also at the nursing home, because I didn’t work for the nursing home, I was a consultant at it.

JANA:  And was this back in Tennessee?

KALISHA:  Yes, this was in Tennessee. So I was a third party. I could come in and look at nutrition and activities, the medicine side… I could look at how nursing worked, and try to create interventions for patients. And so it was in this experience that I was like, we just don’t know enough. And so I applied to OHSU– Oregon Health and Science University— knowing I wanted to work in dementia, but not specifically knowing I wanted to focus on African American and Black individuals with dementia. It was definitely, I want to work with the dementia population, there is so much more we need to know, how do we handle this day-to-day, what happens before they come into long-term care and nursing homes? How do we keep them at home longer? Just all these different questions. How are providers talking to older adults with dementia and their caregivers? What is the messaging that they’re hearing?

KALISHA:  So all these different things. Because one thing I did see, you know, they say that a lot of the medications don’t work. And we don’t have anything that prevents dementia, but we do have medications that can sometimes slow that process. And for me, a lot of times it worked in the nursing home. I mean these were residents I was seeing week after week after week. So subtle changes I could pick up on, whereas a primary care provider who’s seeing them maybe once a year, maybe once every six months, maybe didn’t notice a change. And so it was just interesting to have that kind of hands-on, intimate experience. And so I knew that there just wasn’t enough. We didn’t know enough. And so, I love older adults, I love my grandmother, so I was like, you know, I think I can tackle this. You know, sometimes I feel like the stars were aligned, that God had a plan because had I not been raised by my grandmother, I may not have been as open to wanting to spend time with older adults. But I truly enjoy it and so I went in and applied at OHSU knowing I wanted to do dementia research. But it wasn’t until our philosophy class here, that I really started to look in the literature and look at kind of the structural processes and different things that have shaped the United States. And looked in the literature to see that, as you mentioned, that African Americans are suggested to be two times more likely to develop dementia than non-Hispanic Whites.

JANA:  Going back just a second to the long-term care facilities… was the residential population of the facilities predominantly African American? What were the demographics of that facility?

KALISHA:  It was not predominantly African American. So at this time I’m living in Nashville and some surrounding cities. No, it wasn’t predominantly African American.

JANA:  Okay, so during the process of investigating in the literature, you discovered that African Americans with dementia and their care partners really do differ from other populations in significant ways. So why don’t you talk about how they differ from other populations and the risk factors that make Alzheimer’s and any other dementia more prevalent in the Black population?

KALISHA:  Factors that have been associated, and again, this is coming kind of from the Alzheimer’s Association literature. So African Americans tend to have higher rates of hypertension, stroke and diabetes. And so as you mentioned in the introduction with vascular dementias– hypertension, stroke, diabetes are all vascular diseases which affect blood vessels and different things like that. And so as a result, there has been a suggested association that it’s because of the increased prevalence of diabetes and hypertension in African Americans, that has made them more kind of at risk for these vascular dementias. Speaking from my experience [in the facilities where she worked], it was very general, like across the board there are a few African American adults and a couple of Hispanic older adults, but the predominant race was non-Hispanic White. And there’s literature about that as well, because oftentimes underrepresented minorities– your African Americans, Blacks, Hispanics– won’t put their loved ones in a nursing home or a long-term care facility.

JANA:  Right… and that’s a cultural thing, right?

KALISHA:  And that is a little more cultural. You know, I’m still kind of teasing out some of that nuance, because we just don’t know a lot about it. And I often try to tell people, I can only give you my lived experience. So I have to give context around that. I am African American, Black from rural, West Tennessee, raised in a Christian home and female. And so that context is very different than, you know, now being in Portland and meeting African American, Black male, females or however they identify gender-wise. And then seeing even the difference with culture here. Now there are some similarities, but there’s difference as well. So, I’ve been saying the Pacific Northwest is very polite.

JANA:  Uh-huh (laughs).

KALISHA:  They’re not necessarily welcoming. Whereas in the South, I feel like you get a little more of that Southern hospitality… so a little more welcoming.  And it has been a shift for me, to think about it differently. I haven’t really lived in the East Coast, but I’m assuming it would be different there. Like there are definitely geographical and regional differences, in resources, in our attitudes and our perceptions about [how] things are, how we come across to one another. And so just thinking about that, is what has kind of sparked my interest…. knowing that my lived experience has been very different from friends or other colleagues who are African American. And it’s just enough to be like, wait a minute. In research we do a really good job of kind of putting all non-Hispanic Whites here, all Asians here, we’ll put all African Americans here… And then we’ll just compare across groups and that’ll give us the answer.

KALISHA:  And it’s like, well yeah, it will give us some answers. But at the same time we’re missing out on the nuance within each group. So, there’s some research done that looks across groups, and so I think I just came into research at a time where I was like, okay, well that’s great. But I’m interested in seeing the difference within groups. Because oftentimes we have a tendency to categorize people based on race or ethnicity or gender or religion, and don’t realize that there’s great variability within each of these categories. And what does that look like when we’re taking care of someone? Or wanting to provide optimal healthcare for them? Or to understand their caregiving relationship?  Because it could very well be different from someone else’s. So that’s just kind of how it all came together for me, was just realizing — and I think part of that has to do with my move here to Portland, and maybe not as much with the literature, but just understanding that each region’s a little different. Each state’s a little different, so the people there have to be a little different.

JANA:  That’s so interesting. So it sounds like the move to a different location actually influenced the direction of your dissertation. Is that right?

KALISHA:  Yes. I will say that helped as well. That and philosophy. The philosophy course here was taught by Dr. Dena Hassouneh… and just really taking the opportunity to look broadly at things and understand some of the philosophical underpinnings and not erase historical oppression from it. Like being able to pull that in and look at a picture holistically. Look at the structures that are there, that were that in times past and how that affects the present. And really, you know, looking at that. A lot of times we don’t want to look at what’s unpleasant or think about something that’s negative or hurtful. But a lot of times these negative, hurtful, traumatic experiences have influence in the future. And so really being able to step back and look at the world and my own kind of viewpoint and paradigm and shift that sort of have been helpful. And then Portland State University here has a Black Studies department, and so I was able to take a class from Dr. Shirley Jackson. Because I wanted more than just my lived experience to influence my research. And so I read this book called “Medical Apartheid” by Dr. Washington, and just really took time to appreciate the past while letting it influence future research.

JANA:  You deliberately situated yourself in a way that opened up a lot of paths of inquiry for you that might not have been there, had you not actively surrounded yourself with new information.

KALISHA:  I’ve discovered that I really enjoy learning. And learning from people, and valuing what others have to say and seeing whether or not that resonates with my lived experience or not, and how to use it moving forward. I think it goes back to older adults, kind of their stories and just hearing from them and learning from them and realizing that, you know, we all have very different perspectives of how we see the world, but to be able to respect how someone else sees it and pull a little bit into that and to my own reality. It’s been really neat, a really neat experience. I mean, pursuing a PhD has been one of the most challenging things in my life, but I am loving it and I will be forever grateful to OHSU for this experience and looking ahead to next steps and, you know, it’s been great.

JANA:   Let’s not get too far ahead. I want to talk about–

KALISHA:  –no, let’s not. Let’s not. I’m not ready yet.

JANA:  Okay. So you co-authored a manuscript that was recently published in the Journal of Gerontological Nursing. It’s called, “A Literature Review of Formal Care Use by African American People with Dementia and Their Caregivers.” So I wonder if you could tell us a little bit about the purpose of this review and some of the significant findings.

KALISHA:  I can’t speak to every PhD program, but definitely at OHSU one of the things they wanted us to do and really emphasize was that you need to go to the literature. See what’s there, what’s known, what’s not known, where are the gaps. You know, with your dissertation you’re just going to add one small piece to the pie or the puzzle or however you want to look at it, and trying to fill a gap. And so this is actually one of the manuscripts that will be my dissertation. We have a manuscript option aside from the traditional dissertation where I write three manuscripts that tell a story, at least one has to be accepted by a peer review Journal. I’m, as you mentioned, that has been published in the Journal of Gerontological Nursing.

KALISHA:  And so this was my opportunity to do kind of a deep dive into the literature and see what is going on when it comes to African American persons with dementia or individuals with dementia, however you want to say it, and their caregivers. And whether or not they’re using formal services, or formal care or health care services. And so my definition of formal service use or formal services or formal care, sometimes I use those interchangeably, was whether or not they were going to the hospital for either inpatient or outpatient visits, whether or not they were participating in adult day services or respite care or whether or not they had paid assistance with activities of daily living, such as bathing and feeding, or instrumental activities of daily living like managing their money or helping with managing transportation. And what came out of this manuscript, or what was I think important, is that African Americans do want help. They want to use these services, they want care. And it wasn’t that surprising to me, but it’s kind of contradictory to the present literature that says they’re less likely to use these services.

JANA:   Hmm.

KALISHA:  If you want services, how are you less likely to use them? And so some of the things that were brought up was that possibly African Americans were unaware of services that were available to them, or when they were in different appointments with providers maybe they weren’t able to convey what they needed, and so as a result these needs weren’t necessarily being met. That was the biggest thing– that they want the services, but then it’s like, they’re not really using them.

JANA:  So what’s the reason for that? Is that cultural? Is that intimidation? Is that– I mean going to the doctor is fraught for most of us anyway.

KALISHA:  Yes. Yes. It can be a challenge even as a nurse who knows the importance of going to the doctor. So there’s a couple of things that I think previous literature has kind of hinted at. Again, we’re still really scratching the surface when it comes to African Americans because we just don’t have a lot of research out there right now. But I have great colleagues and friends that are working to change that. And so one main thing is that a lot of times memory impairment, memory loss is just thought to be, oh this is just a part of normal aging. And so if you think it’s normal then you wouldn’t seek treatment. You wouldn’t go to a doctor because this is just how, you know, big mama is. This is just the way mother and father have been. This is how their mother was, you know, and so if you think that that’s normal then you’re less likely to seek help for it because you think it’s normal.

KALISHA:  The other thing is that sometimes people aren’t aware of what resources are available to them. Some people don’t even know what respite care is, that you can have someone place in a skilled facility or a long-term care facility for a week or two if you need just to kind of take a break, just to kind of breathe, for your own mental health. Or that there are adult day services where you can let your older adult, your family member, significant other spend the day there while you’re maybe running errands or doing some things or just taking time to breathe. So a lot of times these resources are readily available to people and they’re not necessarily offered to individuals and so they don’t know what’s out there for them, or what services they could use or that would be covered by their insurance or not. These conversations I think just aren’t happening.

KALISHA:  Oftentimes doctor visits are so quick. You’re dealing with a quick medical problem, it’s in and out, 15, 20 minutes and then you’re kind of, you know– move ’em through, is kind of our healthcare system today, where there isn’t really this time to sit down and talk and give counseling and check in and see. And so one of the small recommendations I had made, or thought about was, a lot of times nurses spend more time with these families. And so if we’re able to give nursing these resources and this information, then it could be that it comes up in conversation or they overhear a conversation between older adult and caregiver, and can intervene and make suggestions that may not come from the provider.

JANA:  So how do you go about collecting data or recruiting participants? Have you ever gotten close with the subjects who participate in your research? That’s probably not something that you would want to do as a researcher, but it’s kind of inevitable, I think, right? Getting emotionally attached. I mean, it’s such a delicate subject and people are really opening themselves up when they come to you, right.

KALISHA:  Yes.

JANA:  So how do you find them? And how do you manage the emotions– of them and you, I guess — around it?

KALISHA:  Yeah, and because I was a clinician first. And so as a clinician you’re taught to treat and to give instruction. And as a researcher, it’s kind of this sort of hands-off experience that I’m still, again, that’s why I haven’t graduated yet. I’m still learning how to balance this. They’re like, you’re not ready yet. [laughs] So I’ve had a unique experience. The literature review, again, was simply me diving into the literature, seeing what was there based on kind of the criteria, the inclusion criteria I set for this literature.

JANA:  Right. That was easy. Relatively easy. No need to interact.

KALISHA:  Yeah– relatively easy. No need to interview anyone. And then with another manuscript I’m working on, I was given a data set from Dr. Carol Whitlatch out of Cleveland, Ohio at the Benjamin Rose Institute [on Aging]… of 62 African American dementia dyad. So African American, or a person with dementia and their African American caregiver.

JANA:  That’s a dyad. Just to define the term for listeners.

KALISHA:  Yeah, that’s a dyad. The person with dementia and their caregiver, is a dyad. How I define dyad. It’s basically just two people. So it could be couples, but how I’m defining it in my research is the African American dyad– or the person with dementia, and then their caregiver. If I’ve taught one word that would be it: dyad. [laughs]

JANA:  [laughs] That’s a cool word.

KALISHA:  It is. So I was given a data set that has 62 African American dementia dyads. And so I’m just re-analyzing that data in a new way.

JANA:  Sorry for interrupting. But when you say you were given a data set, does that mean that you were given information already about individuals?

KALISHA:  Yes. So I was just given de-identified data. So I don’t have any of their personal health information.

JANA:  Oh, okay. Got it.

KALISHA:  But I have data that was– so these individuals were previously interviewed by someone else. And so I get to do what’s called a secondary data analysis. So I look at the data and analyze it and ask a different question. So my other proposed manuscript for my dissertation was a small qualitative study I’m doing locally here in the Pacific Northwest. And so I am recruiting, and have recruited and completed the interview for one dyad and have a second dyad scheduled later this week. So it’s been really interesting, and interesting when you’re recruiting for your own study. I worked as a research assistant and recruited for herstudy, but it’s very different when it’s kind of your own baby. And so you want people to be interested and you want them to be eligible. So it’s a whole other kind of idea of around, hoping that your study– youthink it’s interesting, and so you hope other people do, too, and are interested enough to want to participate and then are eligible to be in the study. So it’s a whole other mindset and thought process.

KALISHA:  I have been very careful in my recruitment. Dementia can sometimes have such a negative connotation and so I’ve just mentioned memory loss, you know. Are you acknowledging that you have memory loss? And because I want the older adult to be aware that they have memory loss and be willing to admit that they have memory loss, ‘cause if not, some of the questions I ask won’t really work. So I screen both the person with memory loss as well as the caregiver, just to make sure that they both screen eligible. And making sure I don’t get too close. I guess luckily or fortunately I only do one interview with them, because this is, you know, a dissertation study. So of course I’d like to interview them over time and see how that works. And I think having more longitudinal studies where you are checking in with people more often, could allow for you to get closer to them and more emotionally attached. I will say it has been an honor and a pleasure to interview the dyad I did interview. And I’m one of those people that needs community and friends, and probably could get close to anyone if given the opportunity. But in this capacity, like I mentioned earlier, I have to sort of turn my clinician hat off and come in more focused on the interview and making sure I’m asking the right questions and following up with them, and asking it the same way so as not to bias my results. So yeah, it is very different than being like a clinician, because as a Psych Nurse practitioner, I had clients that came to see me. I did feel like I could get, not really close, but closer than I feel like I can get now as a researcher.

JANA:  How many dyads are you going to be interviewing for the third manuscript?

KALISHA:  Well, you know, in a perfect world I would have at least 15 dyads. I think I’m just hopeful if I can get 10. You know, 10 to 15 would be nice.

JANA:  And where are you advertising, as it were? Where are you recruiting?

KALISHA:  So I work part-time at the Layton Aging and Alzheimer’s Disease Center here, and so I get the privilege of visiting with participants and doing a little bit of checking their past medical history, a cognitive exam and then a little bit of a physical exam. And so some of those participants, once they found out I was a PhD student, have expressed interest in wanting to help with my studies. So I did reach out to a few of those participants. I have networked with a few churches here, beauty salons, barbershops… I even posted it on Facebook at one point in time, in a couple of the groups here locally. It’s unfortunate I’m not from here, so then you know, it’s harder sometimes to get in to communities when you’re not from a place.

JANA:  Yeah, sure.

KALISHA:  And so people are having to learn you and your intentions, make sure kind of what you’re doing is safe for the older adult and for them. So it’s been a neat experience. I’m enjoying data collection, primary data collection as they call it, and you know I’m just hopeful and optimistic, and it’s really been good.

JANA:  What do you want to come out of the research? I mean it is a PhD dissertation so it’s going to be a living document, obviously. But beyond that, what do you want to come out of the research?

KALISHA:  So I have really kind of focused on this idea of decision-making involvement. Not necessarily with decision-making capacity, because oftentimes we think of older adults– especially older adults with memory loss or dementia– and think, oh they probably don’t have the capacity to be able to make decisions. And while I’m less interested in that, I’m more interested in how involved they feel like they are at making decisions. And African Americans tend to have more of an interdependent decision-making process, where it’s not just one person in isolation making these decisions. And so I’m just wondering if that will come out of the research. I guess my assumption in a way is that there is almost a spectrum of decision-making involvement. And so you may have some dyads that feel like they share decision-making, and I haven’t been able to tease out yet, whether or not– when we think about decision-making there’s everyday decision making, such as what are you going to eat today? And what time are you getting up? And what are you wearing?

KALISHA: And then there is more of the formal care healthcare decision-making, about will you keep your same doctor? And do we want to try respite care? Or do we want someone coming in the home to help as a paid assistance with ADLs, or activities of daily living or instrumental activities of daily living.  So I haven’t teased that out yet in my work, and I think that’s where it will go. But really just looking at this decision-making involvement. Because to me in my mind, if you have a dyad that let’s say shares more decision-making, and then there’s a dyad where it’s like, no, I’m the caregiver, you know, I care for this older adult. I’m the one that makes the decisions. I have to make the decisions because I have XYZ going on, or maybe I’m caring for someone else, or I work fulltime so I have to really make these decisions kind of from my own best interest, but with their interest in mind.

KALISHA:  Versus maybe this other dyad that’s like, no, I’m the caregiver but this is how my mother or my father or my spouse has always wanted it. They’ve always told me I don’t ever want to go in a home, or I would be fine with that if there was no other option. And so when you’re looking at how decisions are made, the messaging is different from a provider standpoint. And so I think it’s important to really figure out, in caregiving, how decisions are made, how this caregiving process takes place. Hopefully once we can figure that out, then have more of a strategy of how to make sure we’re supporting the dyad the best way we can.

JANA:  So after you finish your PhD, what do you think you’re going to do?

KALISHA:  I definitely would like a post-doc after I finish, just to continue the research, to apply for more grant funding. I do see myself teaching in an academic institution somewhere, but research would be the forefront.

JANA:  This isn’t really part of your research maybe, but I wonder if you can recommend any resources for African Americans with dementia and their caregivers, that they can tap into. Maybe in the course of your work, you’ve come across some support services that folks don’t know about that maybe you can share.

KALISHA:  Well, I would say of course the Alzheimer’s Association has been helpful in both research and having resources. I know every city and town is not created equal when it comes to what resources are actually in those cities. But if you have Internet access, they oftentimes have a lot of great webinars and podcasts there, I’m sure. If you have concerns about your memory or memory loss, it is definitely important to speak to a healthcare professional. And if you’re not getting the help you need, then I would say go to another healthcare professional and try it again. And if that’s not helping, then I know there are some support groups. You know there’s church support, sometimes a lot of churches now have health and wellness ministries associated with them. So being able to tap into that resource. Another thing I will say that’s a little bit, sort of along those lines but different is this: if you’re interested in research, being a part of research– I know sometimes it can seem scary, and it can seem like something that you know African Americans and Blacks have haven’t really done, but a lot of the medicines, the treatments are based on research.

KALISHA:  And unfortunately that research has not really had participants that are African American and Black or Hispanic even. Like a lot of the research and research participants are non-Hispanic Whites. So we have drugs that haven’t really been tried on us, as African Americans. And so a lot of times going back to that heterogeneity and variability within populations and across populations, you know, we have these treatments and resources that haven’t necessarily been tried on us, but that we’re using in medical practice. So if you could get involved with research, that would be great because we don’t know what we don’t know. And we won’tknow until more people who look like me, who are African American and Black, Hispanic or underrepresented minorities, until we decide to trust again to be in research.

JANA:  When was the last time you saw your grandmother? And how’s she doing?

KALISHA:  I saw her… I went home for Thanksgiving. Yeah, I hadn’t been home in years, and then when I bought my flight I remembered why I hadn’t been home in years on Thanksgiving.

JANA:  Why you hadn’t flown? Or why you hadn’t gone home? Where’s the complication?

KALISHA:  Why I hadn’t– no, I love going home, but I hadn’t seen her on a holiday in years. And I kept saying to my fiancé, I’m like, I really need to see my grandmother for Thanksgiving. Hopefully she can have all of her grandchildren home for Thanksgiving. And she did. So she had, we were all home, but that ticket was expensive. But it was great. So– and I actually just talked to her this morning. So, she is well. You know, she always wants to know how the weather is, and she was upset that I was at the bus stop in the rain, but– it’s Portland. That’s what it does here. So.

JANA:   Well that sounds like a good place to end, unless you have any last thoughts. Is there anything else that you’d like to say or leave with the listeners?

KALISHA:  I’m thankful for this opportunity. I’m grateful to be, you know, a PhD candidate and to be on your show today, Jana. Thank you for having me.

JANA:  Where can folks reach out to you?

KALISHA:  My email is my last name, so B-O-N-D-S-K at O-H-S-U dot E-D-U. I’m Kalisha Bonds on Facebook. Twitter is… oh God, I’m supposed to know this stuff aren’t I?

JANA:  That’s all right. I’ll find it for you. We’ve been speaking with Kalisha Bonds. She’s a PhD candidate at Oregon Health and Sciences University. Kalisha’s research is focused on African Americans and dementia. Send her an email if you want to learn more about her research, but we will have links on the Agewyz website to some of the work that Kalisha has mentioned. Kalisha thank you so much for being on the show, and for doing this research, which is so important, and best of luck going forward. Thanks, Kalisha.

KALISHA:  Thank you.