How to Advocate for Yourself & Your Love Ones with Dr. Ashley Sanderlin

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Welcome back to Ask Dr. Mia podcast, Conversations on Aging Well. And today I'm very excited to have with me Dr. Ashley Sanderlin. Dr. Sanderlin is a passionate researcher investigating risk factors and early interventions for Alzheimer's disease. She was the first African-American PhD in neuroscience from Michigan State University. And currently she works at North Carolina A&T University as an assistant professor. Welcome to the podcast, Ashley. Thank you so much for having me. I'm happy to be here. I've been a listener, so I was excited to get the invitation as well. Oh, thank you for being a listener. I know we were colleagues together and still Ashley is very much still plugged in with Alzheimer's disease research within our Wake Forest Alzheimer's Disease Research Center as well. But today I wanted to talk with Ashley about advocacy, particularly for older adults and- their loved ones within the healthcare system. I know as a physician, a clinician, I see one side of it, and then I have had some recent experience with my mom as her healthcare advocate, as she has gone through her health journey. But I know Ashley has been doing a lot of community work, both within her faith organization at the Galilee Missionary Baptist Church, as well as in her work within the Brain Registry of North Carolina, and I'll let her tell us a little bit more about kind of the advocacy work that you have been doing. Yes, thank you for the opportunity to share. So what I do is I'm overall interested in modifiable risk factors for Alzheimer's disease, namely in people with mild cognitive impairment, but also my work looks even earlier. So people who have normal cognition, typically over the age of 50, and we go out into the community and discuss lifestyle habits, medical conditions. things that can increase a person's risk for developing Alzheimer's disease, but also having an awareness piece of the brain and how we can keep our brain healthy, what are some activities and habits that promote good brain health, and hopefully reduce the risk of Alzheimer's. We do that through community work through the Center for Outreach and Aging and Alzheimer's Disease at North Carolina A&T. I'm also the site PI of the North Carolina Brain Health Registry where we North Carolina residents to studies happening across the state so that they can get that healthy brain health information and also be able to learn more about clinical trials and how people can participate. I'm also doing some work with the Maya Angelou Center for caregivers, so creating caregiver colleges in different formats across the state so that caregivers can have access to the vital resources in their counties that can help them. as they do one of the hardest jobs we have in this country. Yeah, absolutely. And I know a lot of the comments that I hear from some of my listeners and also patients, perhaps not so much within geriatrics when within the work I do, which we are privileged and able to spend a significant amount of time with our patients, but in most primary care visits and even outside of primary care, the visits tend to be so short, you know, a 15 minute visit or 20 minutes. I like to joke that in 15 minutes, I can barely get an older adult to sit down and take vitals, much less talk anything in depth about their health. So what kind of advice or what have you suggested to folks about how to prepare for those visits? And a lot of the work that I've done at Wake when I was at the outreach core of the Alzheimer's Disease Research Center, and even now, we do outreach and community awareness, but personally, I feel that it is important for us also when we're doing this type of work to empower people. And empowering people in that doctor's office is really one of the most important places we can empower people. So some of the things that I like to add on to our talks or whatever materials that we're bringing is how a person can advocate for themselves in the doctor's office when they have that 15 to 20 minute slot. And a lot of that has to do with being prepared, thinking ahead for the visit, and being able to take some time to even write down questions so that they can take those to the doctor. We know that there are a lot of cultural differences in how people explain and describe what they're experiencing and feeling, just like everyone perceives pain differently. So if I ask you on a scale of one to 10, or have you picked the little smiley face, how do you feel? Culturally, what we share and even how we express that is going to be very different. And so I think it's really important, especially in the Black community. that we talk about diseases and disorders in terms that can be understood, but also empower people to use specific language that they can write down so that they know exactly how to ask a question. We also see, and I'm sure you're aware of this in geriatrics, there are so many people who don't know why they're on specific medications. And so they may be asked to bring a list or even bring their medications, but quite often quick to take them off of medications. I think that's more of the fun for geriatricians to do those assessments. But even having people ask the question or giving them the question, you know, if my blood pressure has been controlled for three years and I'm on three medications, can I cut that back to two? And trying to think through or entertaining the idea of how they can be a partner in maintaining their health condition. Yeah, absolutely. That's so important. I recently actually made a table of medications for my mom where one column listed the name. One column was the picture of the bottle, which I had to find on Google because I didn't actually have pictures of her bottle. We live, we don't live in the same city. And then one, one column for what is this medication for? And then one column is for how often to take it. And I don't know how she did with the table, but at least it made me feel better because she was like, I'm taking so many medicines. But in reality, she is on three different prescription medicines plus a lot of supplements. And like, mom, you know, some of those supplements, perhaps you don't necessarily need them. But yes, there's certainly a Goldilocks phenomenon with medications. You wanna take not too few, not too many, just to write them out. Yeah. So besides... Besides writing down your questions and kind of preparing for that visit, what other suggestions or advice would you give for folks who are kind of perhaps nervous about their visit or feeling like they can't necessarily talk with their clinicians about what's on their mind? Well, everyone is different. Sometimes people really feel empowered when they have someone there that can help them, and others feel better when they're alone. They want that privacy. So we encourage people to also find, if you need a partner or a friend, be bold and courageous to ask, will you attend this doctor's visit with me? So that they can have someone who knows the plan or knows the questions as well, so if they forget something in the moment. they have that partner who can help them. And those who prefer to be alone, again, taking that list, but also not letting the doctor go until you've gotten to everyone. And then sometimes it's also just helpful to practice saying it out loud. Because a lot of times what can happen is if you're in the room and your physician may not look like you or you, what we find is people wanna express themselves, but they're afraid that the words that they'll use someone of a different ethnicity or culture may not understand the syntax of what they're saying and also may begin to discredit or discount what they're saying and their feelings. So being able to have that practice session in a outreach event with us or with a family member or a friend is also really important. And then also encouraging people that You know, you can shop around for a physician. You can shop around for your primary care, any other type of care that you need. You can get second opinions. And so I think sometimes people have that feeling of, I am, you know, subjugated to what is told to me or what I'm given or the respect or the approach that people have when they actually can find a different person. But unfortunately, it does take more work because sometimes depending on the specialty, there may be another three month, four, five, six month wait, but empowering them that they deserve to be heard and also deserve to have all their questions answered. Absolutely, and that's so important. I have been, you know, sometimes calling in or my mom is calling me in into some of her oncology appointments and, and she has expressed this to me and perhaps this is also relevant for other listeners where English is not their first language, even though my mom is fluent in English, she still feels very nervous about her expression in English and I keep trying to reassure her that you know, you can ask the doctor what to you know what it is and she's always afraid that she's saying it wrong or not saying it correctly. Understandably you know medical terms are also really difficult for people to pronounce and medication names are difficult to pronounce. One time recently she asked me I asked her what medication she was taking and she said well I translated all of them into Uh, can't help you there. Um, but absolutely. I think, I think getting a second opinion or finding a clinician that one is comfortable with, um, or that you feel like you are being listened to is really important. And I know from, from the physician perspective, there is a huge kind of undercurrent also of burnout and people leaving medicine, uh, especially with the pandemic and the after effects of the pandemic. not to justify any sort of disrespect or people not listening to our patients, but to explain kind of the underlying, I think, tension in healthcare right now. We see it with nurses in the hospital during COVID surges, as well as with a lot of people who are perhaps very concerned with just the way that healthcare is set up right now and perhaps leaving and then having shortages of clinicians to see patients. So I'm not sure how much things have gotten better in terms of the pandemic, but I'm hopeful that we're kind of in this very awkward middle where we are sort of recovering, but we haven't gotten to a place where we have really improved the healthcare access and the availability of appointments. and certainly I think certain patients, there are other models of care, whether that is care that is directly focused on older adults, where there are sort of special payments to practices to kind of pay per member per month, so that patients and their clinicians can get a longer visit time to talk in depth. Or there are also a lot, I know there are a lot of folks who are doing what's called direct primary care, where people are paid a certain membership per month, and then they get more access to clinicians. Not to say any of them are what an endorse or a favor, but to say that there are other options as well, besides the traditional and a fee for service, Medicare or insurance payments. But transitioning a little bit to talk a little bit about Caregiver College and the work that you're empowering caregivers in not only advocating for their loved ones, but also kind of advocating and teaching their community. Can you share a little bit more about that? Yes, well, what I'm doing now is really joining a lot of the great efforts that have already been done, led by Dr. Byrd when she was at North Carolina ANT and the founding member of our Coach Center. They had a caregiver conference for, I believe, over 10 years, as well as a caregiver college. And that now is housed at the Maya Angelou Center for Health Equity at Wake. And so they have a five-day caregiver college training course where people apply. to be certified in caregiving, and they receive a lot of resources, support, connections, self-care, and things that help them in that journey, and give them tools to also take great care of the loved one, primarily with dementia. And so my part is a small part of really the big pie that's already been made here is... thinking about ways that we can model this across the state in different counties that may have different resources. So in Forsyth County, we have lots of resources. We have Wake School of Medicine, lots of opportunities for people to get great care. But when we look at places like Wilson City, or maybe even moving into Charlotte, where we have a big metropolitan area, but people may not feel connected or plugged in, we wanna bring opportunities there. So we're- planning in Charlotte a caregiver conference so that we can connect caregivers to the resources in their community that are specific to the needs that they have. What we found so far in the focus groups that we've conducted in Charlotte and in Wilson City is that people need access to the resources, but they also need to know how to access them. So what are some direct numbers? What are places they could walk into? What are 24-hour hotlines? How can they have access to respite care? But then also they need access to services like legal and financial services. How do we begin the process of if a person, if a loved one is developing dementia, taking property out of their name so that it does not fall to the state or to a assigned caregiver? So many things, planning for end of life care, as well as the legal aspects of that. We want to bring people to them so that they can have a hands-on interactive workshop and get the tools that they need to be empowered to care for that loved one, but also have all the other aspects of essentially their life and their loved one's life set up financially, medically, personally, spiritually, and also having some rest and hopefully time to reset as well so that they do not develop their own. health conditions, which we see often happens with caregivers, but they're finding a way to find balance in the journey. Absolutely, and that's great work. And we will link the website to COAACH And COACHE really stands for the Center for Outreach in Alzheimer's Aging and Community Health. So not the COACHE bag, but COAACH as in, really supporting Alzheimer's awareness and dementia awareness and prevention programs. So that's really exciting work. I think the Charlotte community along with other communities in North Carolina, everyone needs this type of workshop and information. And the legal aspects of, legal and financial aspects of dementia journey is oftentimes the most complicated and stressful because those are real savings and assets that people have worked hard for their whole life. And those really are, you know, very prime and center of what people are worried about as they may start to notice changes to their memory. Absolutely. And I know the Caregiver College not only trains caregivers to be advocates, but they're also empowered to then educate their communities in Alzheimer's prevention and disease modification strategies. Is that right? Yes, so we start off the college, excuse me, with what is Alzheimer's disease? So people who attend or who apply and are accepted into the program, they first learn what is Alzheimer's disease. This program has traditionally been designed for primarily caregivers of color. So how does this disease impact people of color specifically? And what are the risk factors that increase their risk? And then there's also a discussion about first degree relatives. Oftentimes we see that the caregiver is a first degree relative. So they are at an increased risk. And so understanding the development of the disease, but also the development of the disease and the fact that risk factors kind of can compound everything is important to that caregiver as well if they are a blood relative. so that they know for their own selves how to help prevent the disease or disorder. What do you think are some ways specifically in the Black community that Alzheimer's disease is unique or presents differently that people should know about? Well, from what we understand from the science, we definitely need more people of color participating in our research studies. And that is one of the goals of the North Carolina Brain Health Registry to increase minority recruitment into studies. But one of the things is we know that people of color have first a distrust of the medical system and don't feel that if there was a cure for Alzheimer's disease that it will be equally distributed. that they would be able to be impacted. And so what we find from that or related to that is that oftentimes people of color are diagnosed much later. And so they don't have the opportunity to have any early interventions or some medications that we know typically are only actually treating some of the symptoms, but can help that person still engage in everyday life a little bit longer. And then sometimes it's an understanding, I would say across all people. of what is actually happening. So, distangling Alzheimer's disease from normal aging, what is actually happening in the brain, and the progressive nature of that. And so, how to notice and be aware of that. Absolutely. And I think that information is so important. I've had certainly clinical experience in the sense that I've seen Black Americans and other people of color come into our memory clinics and overwhelmingly they're presenting at a later stage of their dementia compared to white Americans. And I think it's so unfortunate because not only Even though medications is a small part of dementia care, a lot of what we could do and talk about earlier in a disease course are the things to protect, their legal resources, financial investments, to protect people from falling into scams that target older adults and how do you set up having another person be on your bank account so that they can. keep an eye on your assets. And those are really important things that are outside of kind of what we traditionally think of that a doctor would talk about, but are really, really important. And sometimes even when patients ask me, why do I wanna know that I have dementia? There's nothing you can do about it anyway. And I say, well, perhaps that is true. We don't have great medications. And even some of the newer medications for Alzheimer's disease are controversial. not well studied in African Americans, there are a lot of other things that are not necessarily in the form of a pill that we can do to try to improve your experience and make sure that you're safe and that your family knows what to do. So I think those are absolutely, you know, in my mind, the most important things that we can discuss earlier on. rather than waiting until a catastrophe happens or someone send in a $10,000 check when they should have sent in a $100 check. Yeah. yeah, absolutely. And preparing the family. I think it's one of those things with any disease in the family. Not knowing you kind of have a, you cannot face it as quickly, but knowing you're able to become prepared and you know what's going on. Cause sometimes the person who is changing with dementia, their behavior, their attitude can be very frustrating to family members. And oftentimes it's more so the mood and anxiety or depressive symptoms that become the most overwhelming for the family members and they want to then seek out support or help and just getting an answer is the first step of what's going on. And we're really lucky in the state of North Carolina that we have two Alzheimer's disease research centers. So we definitely promote those as well because sometimes navigating the healthcare system does not get people quickly to understanding what is going on in the brain, but having our observational studies at Wake School of Medicine and at Duke and Chapel Hill, you're able to get more specialized testing so that you can quickly get the information from a scientific basis. and that could be followed up with the clinician as well. So a lot of times people don't know that either, or if they're having a lot of trouble with insurance and navigating that, I often recommend that as well. We have these observational studies with research, of course you don't get everything back, but you will be informed if there is a cognitive impairment. And I think that knowledge is power. So being able to have that information. is going to be able to at least start people on the journey a little bit sooner so that they know now what to take to that doctor's office and say we have a diagnosis and they can have follow-up care. Absolutely. And I know that people who participate in research overwhelmingly want to contribute to the larger group of people who benefit, but sometimes there are also direct benefits to the participants. It's not uncommon that I uncover something physically going on that wouldn't have been uncovered if they didn't show up in a research visit where I happen to be examining them for the purpose of research. but also found out that, oh wow, you actually have atrial fibrillation. Your heart rate is irregular. Or that maybe the reason why you're falling is because you don't have good sensation in your feet and you should ask your doctor for physical therapy and get your vitamin B12 level checked, which we do check. And it's oftentimes, other things that you couldn't even imagine could be uncovered during a research visit where you're getting additional information about your health and also contributing to what we know in general about people like you who may not, may be different from what the majority of the population look like. So I think that's really important work. Anything else Ashley that you would like to share about your work or how to get involved? Yeah, so we host events through the Coach Center. We have the, like I said, I'm a site PI for the North Carolina Brain Health Registry. Anyone can sign up and be a part of the registry. So you can just Google North Carolina Brain Health Registry and become a part of our registry to get our healthy newsletter each month, but also learn about many of the research studies that are happening. And when we do outreach events, we want to really train and educate people in the community about clinical trials and about research opportunities. And like you said, some of the benefits that can be personally afforded by participating, but also the help that we need, you know, we definitely don't want to go into the community like we are the authoritative, authoritative figures, you know, the people. are the ones that we need to help understand what is going on in the brain and in the body, but specifically for dementia and Alzheimer's disease, we need the support of our communities so that we can get answers and a cure that works for everybody. That's really great work. And we will link the web pages to Coach as well to the North Carolina Brain Health Registry in the show notes as well. And that I want to kind of end the note of this episode and encouraging people to get involved if you're worried about your memory and that there are a lot of resources out there as well as opportunities to contribute to research. And we thank Dr. Sanderland for joining us today and telling us about her great work. And see you all next time.