In our LiveTalk series, Being Patient spoke with a panel of speakers about the challenges of accessing healthcare for underrepresented communities and strategies to reduce the barriers for the diagnosis and treatment of dementia. This panel discussion is part of Being Patient’s Diversity & Dementia series, produced with support provided by Eisai.
Black and Hispanic people are at a higher risk of developing Alzheimer’s and related dementias, but even so, the rate of diagnosis for people of color is lower than it is for their white counterparts. Compounding this disparity, timely, accurate diagnoses and comprehensive follow-up care are both less accessible in communities of color. Being Patient convened a panel of speakers to share their wisdom and experiences about the conscious and unconscious bias in the healthcare system, and about grassroots solutions to inequities in brain health and healthcare.
- Arthena Caston, a member of the Alzheimer’s Association National Board of Directors who is living with Alzheimer’s
- Fayron Epps, principal investigator of the Faith Village Research Lab and founder of the Alter program
- David Williams, co-founder and CEO of Care3
Being Patient: Arthena, how hard was it for you to get a diagnosis of Alzheimer’s?
Arthena Caston: It was very hard. The problem was because I was so young. My doctor kept thinking I was just in menopause. I was in menopause for I don’t know how long and I just kept saying this can’t be real. Because I was so young, he just could not believe, or did not want to believe, that I was actually experiencing early-onset [Alzheimer’s]. That was a challenge within itself.
Being Patient: David, tell us about the conscious and unconscious bias in our healthcare system.
David Williams: What we have to recognize is that anytime we interact with the healthcare system, we’re talking to people who are extremely smart and study data, cohorts, populations and how they behave.
That information can benefit us individually as patients. But at the same time, if those populations are still not constructed in such a way that represents what the general population is or someone who is more like you, in Arthena’s case, we’re talking about the ability to introduce systemic unconscious and conscious bias because of those datasets.
For example, if you look at the participation of African Americans in clinical trials, one of the things that I’ve always noticed is that there’s always a small number [of them], especially when the [most prevalent] disease here in the United States is cardiovascular disease. According to the FDA, about two and a half percent of the populations participating in those trials are African Americans. But when you think about who has more prevalence in their population of having cardiovascular disease, it’s African Americans.
You have a mismatch in the population that’s being tested in trials and the people who are getting treatments, and one size does not fit all. That introduces unconscious bias when somebody is trying to introduce a treatment for you, because the population may not actually be reflective of your experience. That’s just one example.
Being Patient: Fayron, would you like to add to David’s points?
Fayron Epps: I just totally agree. I just had a conversation this morning about how we can get more people enrolled, but also not putting it on the burden of the people of the communities of color [and] making sure researchers on the other end introduce these opportunities and educate the communities that we really need to have participation in these clinical trials.
So when we have treatments and programs and interventions, we know it will also work for them as well … We can help change the mindset of healthcare providers so they can see a different narrative. Then they will be better informed on how to interact with all persons.
Being Patient: How do you change that mindset?
Fayron Epps: I think a lot of us know that this problem exists and that is the big question: ‘How do we change the mindset?’ What I’ve done in my team is we’ve taken a different approach: Let me reach the caregivers and let me empower the caregivers with the right tools, the right knowledge that they need. So when they interact [with physicians or providers], they can say, ‘I have this insurance and this is what my insurance covers.’ They can speak up.
That’s part of the CaREgiving While Black [Course at the Faith Village Research Lab]. It’s my team’s answer to how we can change the system. It’s us empowering Black patients, Black caregivers to interact with the health system with some knowledge so they can demand the care that they deserve and need.
Being Patient: David, tell us about how you’re working to change mindsets.
David Williams: I have a very clear philosophy about how data works for us as individuals as well as for populations. When you think about in general how do you overcome bias of any kind, it’s through data. It’s through information. It’s the ability to say, ‘How can I influence the person who is making a decision about me and how can I do it in such a way that is focused on me?’
What Care3 does is it gives you a platform to capture your personal experience and we structure it into data. What we want to do is to say, ‘When that doctor or provider is making a decision about your treatment or course that will happen in your action plan, the biggest influencer will be you, because they will have a clear picture of what’s happened to you maybe since your last visit, or over time if it’s your first visit.’
That way, they know the decisions are going to be personalized. The first way to get ahead of the bias is to make sure that every decision is being made [based] on your experience. Then they can use their big brains and all of the information that they have at their disposal to be informative about those decisions.
But if you don’t go to the doctor or don’t have a telehealth session armed with your own data, your own experiences, then you’ve essentially said to that provider, ‘Go in all these other directions, and in your judgment, do what’s best for me.’
I would ask you Arthena, how did you get over the hump finally?
Arthena Caston: My father had Alzheimer’s, and six of his brothers and sisters had it also. I knew what it was. I knew what my symptoms were. I was still working. I had a hard job. Everything was just not working out. My husband kept saying, ‘You’re going to the doctor every two weeks. You’re coming home with a different pill every two weeks, but you’re not changing. Everything is still the same.’
At that point, I just said, ‘Listen, this is not working. I need to find a new doctor.’ I had this doctor for 18 years. At that point, he sent me over to a neurologist who sent me to a neuropsychiatrist, and that’s when things finally started rolling … I have a friend and she says all the time, ‘You have to be your own self-advocate.’
David Williams: The best way to get a doctor’s attention or nurse or therapist is by giving them data, because [of] two things. One, they’ll be shocked that you have it in that kind of format first and foremost. But secondly, that’s just how they’re comfortable dealing with problems. If you give them data, they’re outstanding.
Fayron Epps: But how do we get Black individuals to understand that concept? How do we get them to know that they can bring this to the doctor like they have a voice? There’s so many people that feel like, ‘They have a white coat on. They’re right and I’m going to listen to them.’ Even in my own family, they don’t want to bring that data. They don’t want to speak up.
I’m from down South and my family’s from a rural part of Louisiana and whatever that white coat says, that’s what it is. We’ve got to fix that. We have to empower our people. They probably only took one class that’s only probably 30 minutes on dementia or whatever specific condition [they] have. It’s really up to us to incorporate data [and] other things so we can get equal treatment and have the opportunity to continue to thrive.
David Williams: I think your work (Fayron’s work) hits right at that cultural issue: Going to the churches where there’s another voice of authority that people respect. That’s what makes [it] such a powerful venue through which to communicate, in terms of getting cultural messages across.
I’ve actually pursued trying to talk to the churches about data. Because data is a far concept to people, they’re just like, ‘What do you mean?’ And I’m saying, ‘It’s your experiences. It’s structured in a way that a doctor is going to understand what you’re saying and doesn’t come off as ranting.’
In one of the other webinars, I talked about that white coat. The problem is in some cases, it’s also like a white hood, and we have to make sure that’s not the case too.
Being Patient: How do you address the historical mistrust of the healthcare system?
David Williams: The way that I’ve always approached it is, one, you obviously give the benefit of the doubt first.
But however you [self-advocate], you have to do it, and it will end up working in your favor, whether it becomes ‘I need to switch doctors because you’re not listening to me. You’re not taking my experience into consideration,’ or the doctor does and you end up on a path where you can have that discovery, you can have the diagnosis occur as it’s supposed to, and in a timely fashion, so that you can still live your highest quality of life given that situation.
If we can get people to say, ‘I can speak up for myself,’ and here’s a way to do it, that arms them with that kind of interaction and confidence when they’re talking to that doctor who’s in a position of authority.
Being Patient: Let’s talk about the stigma of dementia. Fayron, with your work at Black churches, how do you break down the stigma of saying, ‘I have dementia?’
Fayron Epps: We can no longer be silent … ‘I don’t want nobody in my business’ [is] a barrier to getting help. As Black people, we are very private. We don’t want no one in our business, even if they’re blood-related. But we have to break that cycle by having these conversations. That’s why I go out [to the community], paving the ground to speak on dementia awareness, to speak on brain health.
David Williams: Family caregivers also need to be let in [and] have access to [individuals’] experiences too: A lot of times, what happens is [people with dementia] can’t recall things in the doctor’s office. Having a family member, your adult children or spouse, who can also say, ‘These are the things that are happening. We’re recording it because we want to make sure we have some records,’ [and] letting those people in so that they can have that information can also be really helpful.
It is hard for people who took care of you [and] changed your diapers to not only deal with their own health issues, but [also] to have the change of role where their child has to step up. Somehow they feel like they’re a failure at that point as a parent. What I had to tell my mother and even my father [was] that that’s not the case at all: ‘You helped shape us. We want to help you live the best life you can live. That’s our job now and that’s okay.’
The interview has been edited for length and clarity.
Contact Nicholas Chan at firstname.lastname@example.org