Panel: Fighting Dementia in Black Communities Through Education

This article is part of the series Diversity & Dementia, produced by Being Patient with support provided by Eisai.

With reports of clinical trials not being designed for Black patients, community leaders are working to improve the diversity in clinical trials through advocacy and education. Yet, while Black Americans are more likely to develop Alzheimer’s disease, they’re still under-represented in clinical trials for the drugs to treat these diseases. 

For many grassroots efforts to improve diagnosis and involvement in clinical trials, the key is taking away the stigma of talking about brain health and focusing on education in Black communities. 

So, how are community leaders currently approaching the topic of Alzheimer’s and other dementias? 

Being Patient EIC, Deborah Kan sat down with a panel of community leaders in communities of color, taking a grassroots approach to change the conversation about Alzheimer’s and dementia. The discussion will center on approaches to fighting the stigma around living with these diseases and breaking down barriers around clinical research and quality brain health care. 

• Mollie Richards, Long-time Alzheimer’s educator alongside her husband Ralph, board member of the Alzheimer’s Association of Greater Indiana, cofounder of the Mount Olivet Baptist Church Alzheimer’s Association Ministry, and a member of the Indiana Alzheimer Disease Research Center. 
• Ralph Richards, long-time Alzheimer’s educator alongside his wife Mollie, board member of the Alzheimer’s Association Greater Indiana Chapter, and co-chair of the Indiana Alzheimer’s Disease Research Center community advisory board.

Read on for insights from the panel, or find the video on Being Patient’s YouTube.

Being Patient: Ralph, tell me about your family history with Alzheimer’s.

Ralph Richards: Very interesting because I knew very little about Alzheimer’s. My mom passed away when I was 19 years old, and my dad remarried at a later point in life. He married a lady that developed Alzheimer’s. He would do everything for her. He would feed her, bathe her; no one could come in and do anything as well as what he could do. At night, he would sleep in the bed with her and put his arms around her, so if she would move or get up, he would recognize that. But one Saturday morning, he got up to go outside to see his most cherished and loved flowers, his garden. She was still asleep. When he came back in, of course, the house was quiet, and he called out to her he didn’t hear anything. He called her again, and he heard nothing, but he noticed that the basement door was open, he went to the basement door, and she had fallen down the steps. 

I tell you, we tried to work with my father, long distance, so many times, trying to get him to understand he can’t do this by himself. He must work with someone. When we actually relocated them, he was near death. She would have lived longer, but he would have preceded her in death. After seeing that, I became part of the board of directors of the Alzheimer’s Association in New York. That’s where I began to learn more, and that’s how our journey started some 25 years ago.

Being Patient: Wow. That is such a common thing we hear is accepting that you need help. Right? In fact, more caregivers die before people living with Alzheimer’s. The stress alone is a big factor. Molly, when did you first begin your journey into the Alzheimer’s world?

Mollie Richards: This first began, and I didn’t know what it was when I was 17 years old. My father came home from work and said that he had been let go because he could no longer remember what to do. I was 17. I was getting ready to go off to college. It was a tough decision because all the neighbors were saying, “Well, you shouldn’t go. You should stay home,” but my mother said, “I want you to go.” I didn’t know what kind of memory impairment it was because it was a long time ago. Then I went for a year and came back home because we really couldn’t afford for me to continue to go because my mother had to take out a loan. This is a big financial piece that people don’t realize. She had to take out a loan for that first year. I was like, “No, you can’t do that again. I will stay home. I will work full-time. I will go to school part-time. I will pay back that loan and move on.”  I eventually did. I eventually graduated and did all that stuff. 

“This first began, and I didn’t know
what it was when I was 17 years old.”

What’s kind of interesting, Deborah, is that because I was away at college, I didn’t realize that even though I was only away that one year, I came back and lived at home the last three years, that I graduated and went away, so I didn’t realize the full impact that it had on my nine-year-old brother, until a couple of years ago I was talking to him. He was saying how hard it was because my father would leave home and get lost, have a seizure, and somebody would bring him back home. Sometimes he had seizures at home, and my brother would have to help my mom manage him during the seizures. He talked about how horrible it was for her afterward, and I never knew that. It had a bad impact on her, but it also had a bad impact on him as a child. 

Being Patient: At nine years old, that would be very traumatic to see. You both dedicate a lot of time to this cause. Tell us a little bit about coming to that decision. Was this something that happened through personal experience, and you were already on this track anyway? Or did you, as a couple, sit down and decide you both wanted to dedicate more time to this?

Ralph Richards: I’ll let Molly start because it started with her, and then I joined her.

Mollie Richards: Because as an occupational therapist, I retired about nine years ago. Thirty years before that, I began working in long-term care and as a director of rehabilitation programs. I began to learn about Alzheimer’s disease and its impact. In my last job, I worked there for 19 years. The last three years, I was a memory care service line manager. That meant I was responsible for the education of a thousand employees, and I had a team of 16 people, but that was kind of interesting for me. I was really fortunate, while we lived in New York, I was appointed by the governor of the state of New York to [what] is called the Coordinating Council for Alzheimer’s and [Related] Dementia.

I got to work on that, and that helped me. That was focused on people, caregivers living in the community. We were trying to get the governor to understand the needs of people living in the community so that money could be raised to help support them. That opened my eyes even wider. I think I was really blessed that I had a lot of different opportunities to learn about [Alzheimer’s], and I was on the board of directors at the Rochester Alzheimer’s Association and also became vice chairman of the board. So, it was all around me. Then as the years have gone by, I’ve discovered that, and we can explore this a little bit later, so many of my family members have Alzheimer’s.

Ralph Richards: If I could take up where we started with you, when I retired early, by choice from a photographic company in Rochester, New York.

Being Patient: You’re being very modest. You had a big job at Kodak.

Ralph Richards: At Kodak, I worked my way through 31 years, from an account manager to vice president in Washington, DC. Nonetheless, I wanted to do something different. One of the things I did was I went back to school and studied magnetic resonance, MRI. In an MRI, we would image the brain of people with Alzheimer’s, and we would follow them over a period of years and then see how the disease destroyed the brain. Molly and I became the community educators for the Alzheimer’s Association. 

You should have seen it, Deborah. When we sort of started, we read the script, we didn’t have to remember, we read it. You know, we don’t do that today, and I just tell people that when you want to volunteer, you don’t have to be perfect. You just have to do it. That’s how we got started, and we started advancing from there.

Mollie Richards: He’s being modest again. Tell them about the grant that we got to start in Rochester.

Ralph Richards: That was really interesting. I didn’t know how far we wanted to go. But nonetheless, we were a part of the faith-based area, and we work with the Alzheimer’s Association. We had the first Alzheimer’s Office in the church. People from around the city would call us and ask us questions, and we hoped to have been able to be face-to-face with them, but that business model didn’t work. We had to change the business model. We went from the office being in the church, [to] then [going] out to each church. We’d do presentations and answer a lot of questions. Boy, did we learn a lot. People would evade us, they would avoid us. You’d say anything about Alzheimer’s, and they didn’t want anything to do with that. We’ve come a long way today to where it was when we started 20-some years ago.

Being Patient: Tell us a little bit about that from the perspective of both your own families and what you’re experiencing in those early days. Was it that Alzheimer’s was considered a bad word, or just a “don’t even go there” type reaction?

Ralph Richards: It is a stigma. When you stop and think about what the word stigma is, it can be defined as a mark of disgrace, that individual may have been associated with a particular or circumstances or a particular person, and people did not want to be associated with Alzheimer’s. I remember, Uncle Joe would be in the back room, and he was senile, and nobody wanted to come forward, because they didn’t want to be embarrassed by him. For the most part, African Americans are a very private group of people. Essentially we take care of our own. So, we just do not, we will not expose things out into the community.

“When you stop and think about what
the word stigma is, it can be
defined as a mark of disgrace.”

Mollie Richards: Right. [I remember] when it came to be too much for my mother to care for my father because she was quite a few years younger than him, and she had to work full time. It was time for him to go into long-term care because of the wandering, then passing out in the street, and having to be brought home, and this is where families sometimes were not supportive. When she said she had to put him in a long-term care facility, many of her relatives were saying, “No, you shouldn’t do that. You should stay home and take care of him. How dare you. This is horrible that you would do this.” 

Of course, I supported my mother. I told her she was doing what she needed to do, regardless of what they were saying. He was not safe, leaving the stove on, wandering in the streets, and then she was working now. She went ahead and placed him. Me being someone who has worked in long-term care for a long time, if you can find a good long-term care facility, my last one was excellent. It’s a good place for people with memory impairment if it’s a good memory care place.

Being Patient: I one hundred percent agree. My father, who isn’t diagnosed with Alzheimer’s, broke his hip, and we put my mom in temporarily because he couldn’t. He had to be in rehab in a place for three months. My sister and I were so scared to do that. Then once we did, it almost felt like she was better because she was so socially engaged. So, we got that taste. What it means is that if we do have to come to that decision one day, we’re not scared anymore. She was actually really happy. I think what you say, Molly, finding the right place is correct.

Ralph Richards: We’ve had people that would call us, personally, there were very prominent people in the city, but they didn’t want anyone to know that there was Alzheimer’s in their family, or they suspect that they may have. We will either meet them at their home, or they will come to our home. We even met with people in the garage once because their loved ones had Alzheimer’s. Nonetheless, it’s amazing the things that we had to do because people knew very little about the disease.

Being Patient: What were some of those initial conversations like when people were ashamed and didn’t want to ask for help when a family member has Alzheimer’s? How do you convince people differently when you’re going to talk to people?

Mollie Richards: Part of it is the unknown and reputations that nursing homes used to have in the past, and some of us financial, because I’ve run into not just with African American cultures with other cultures, that they want to keep the person home because they can keep that Social Security check coming in, and whatever income it is, and because they can’t afford for that person not to be there. But, finding the right place is such a key to it, and understanding that there are activities. I’m an OT, and an occupational therapist, but I think activities are the key. They’re just the king of the castle in long-term care for people that are not receiving rehab because they’re the ones that give them the activities— they stimulate their brain. 

I worked with a speech and language pathologist back in Virginia, and we worked with a group of long-term care residents who could not participate in therapy because they could not follow directions. We worked with them twice a week, 45 minutes each time, and we did very basic things. They got better, two 45-minute treatments, they improved. Even the nursing staff realized it because they were able to feed themselves and do other things. Physical therapy realized that because they could follow the directions better. It’s just— you’ve just got to keep that mind active.

Being Patient: One of the things that we’ve learned, too, is the creative brain still tends to flourish. Painting, art, and dance— that still flourishes. It doesn’t seem to be as impacted as the hippocampus memory.

Ralph Richards: The other part of that is if they do nothing, it will actually die. The brain will die. What we found is that when we talk to people, it wouldn’t take us very long to see if they must have some type of neurodegenerative disease. For example, we would go to business meetings in our church, and some people become so irate, some are so argumentative, and we didn’t realize until later that was a sign that they’re running into some difficulty from a dementia standpoint. Now, I’m not I’m not giving it a disease. I’m just saying dementia. They’re using expletives, which is unlike them, to do that. Nonetheless, it’s just amazing how they would ask questions, and we want to answer the question, and they’ll ask us the same question a few minutes later. I said, “Uh-oh, something is wrong. How do we talk to them?” or “How do we talk to their loved one to let them know what’s going on? What we perceive is going on?”

Being Patient: How do you have that conversation? I mean, you’re kind of treading a delicate area— you’re not a doctor, right?

Ralph Richards: It’s really interesting because we had a very good friend that used to visit us every year around Thanksgiving and would have dinner with us. He would be very [intentional] on what he wanted to say, but he just had to pause them because he was finding words. He couldn’t find the words to complete the sentence or make the point, and each year, he would get worse. His wife never knew this. Molly and I talked about it after they left, and I said we need to talk to his wife. At least let her know what we have observed, and he needs to seek help. She did take him in, and he was diagnosed, and he may have had Lewy Body dementia. It’s amazing what we see and what we hear. 

Mollie Richards: It has been interesting that some people are open to that conversation because we had another friend who came to visit and stayed with us for three or four days. When we took her back to the airport, we got to call her husband because something was not right. We called and talked to him, frankly, and he accepted it and had her tested. She does have Lewy Body dementia. 

“Sometimes it’s just easier just
to talk to people, but sometimes
people won’t listen.”

Sometimes it’s just easier just to talk to people, but sometimes people won’t listen. Part of it is they say, “Well, and this is changing now,” but they will say, “Well, what’s the point? What can be done about it?” And now, the medications, the pills that they’ve been taking over the years, are still going to be appropriate for people in the late stages. But we’re trying to track people in the early stage, and that’s going to be challenging because that’s when they don’t really identify that they have a problem, but that’s when they can be best helped.

Being Patient: Yeah, as we know, research is now turning mostly towards prevention, not reversing, right? We know it’s almost impossible to reverse neurodegeneration but not. Let’s talk a little bit about the research path. I know part of your mission is to have more people of color in research so that science can look under that lens to understand. What are you doing? How are you making people more aware of research and actually want to participate?

Mollie Richards: I’m being totally transparent. Because my father had a form of dementia, which we don’t know what it was, I get tested every year.

Being Patient: What kind of testing do you get?

Mollie Richards: Yeah—the first year, they did an MRI of my brain. They did all that, and so now they just do the cognitive testing, the blood work, the heart, all the physical things. I tell people that, and I say I go once a year, and I get tested. Because I’m over 65, it doesn’t cost me anything. It’s painless. It’s not invasive, except for the blood draw, and I’m okay. They send me a report each year, and it says that you’re okay, for your age, you’re doing fine. When I tell people that at the end of the presentation, they’ll raise their hand and say, “Well, how can I get signed up for that?” That has helped tremendously, just being totally transparent.

Ralph Richards: Right. That’s an excellent transition. When we look at 6 million people in the United States with Alzheimer’s, two-thirds of them are women, which tells us that there’s something either hormonal or something is the reason why women. A lot of work is being done trying to determine that. One-third of the women, daughters, are caring for the ones with Alzheimer’s, so there’s a double whammy there that they’re experiencing. I think that’s a real key as we begin to look to figure out something about what’s going on here and we understand the risk factors. 

When we look at the risk factors, age is the biggest, one being female is, one diabetes. But here’s one, among others, that’s just beginning to surface. It’s called post-traumatic slave [syndrome]. Now, if you understand what I’m saying here because I’ve been in sales for many years, we would take much time to sell a product for someone, and they would buy it, I mean, hundreds of thousands worth of dollars. What has happened to the slave over the years it’s essentially been the same thing, separating the family, giving them poor choices of food, they will get sick, degrading them. They’ve changed the DNA of the slave. Therefore, I believe it is one of the reasons why African Americans are twice as likely to have Alzheimer’s than whites. Because of that, among other things, but post-traumatic slave [syndrome] has to be calculated in there.

Mollie Richards: A big positive part right now, Deborah, [is] we started working in research with IU in 2016. That’s when we first joined because we moved here at the very end of 2014. So, we’ve increased that number of minority recruitment from three to five percent to over 21 percent. Through the efforts that we’re doing and reaching out to the community, a big change [like this is] kind of easy to see. When we first started, we were at a health fair, and we had the Alzheimer’s tablecloth on, and people would just run away. They were just like, “Oh, no, no, no,” like they were gonna catch it from the tablecloth. 

“We’ve increased that number of minority recruitment from three to five percent to over 21 percent. Through the efforts that we’re doing and reaching out to the community, a big change [like this is] kind of easy to see”

Now people will stop at our booth to ask us questions, and sometimes will sign up for research right. Then another thing that we’re doing that I think is forward-moving. Research has shown that children who are read to at an early age and continuously will have an increase of 8%  of [not] developing memory loss when they get older. So, now we give away free books to children, to try to encourage them to read so we can get them in that habit because books are very expensive. We get donations and everything. We buy new books, and we let the children choose the books that they want. We want to get them started in reading, to build up that cognitive reserve to get their minds working, and not so much on the screens.

Being Patient: That’s actually an amazing strategy because then you’re getting the family to think about brain health before there’s a problem. Are you framing the conversation around prevention? Or are people that you’re seeing who are more willing to participate are because they have a family member?

Ralph Richards: Let me just say this, Mollie and I are not the lone rangers. We’re not doing this by ourselves. We have a community advisory board that we put together, and we formulated one when we were in New York, and we have one here. The purpose of this is a diverse group of people of different professions, and what we do is train them, educate them about Alzheimer’s, and how to recruit people to become part of the study. We do that through, and listen very closely, education. Education is very vital in the Old Testament. There is a passage of scripture in Hosea 4:6 that says, “For my people perish through lack of knowledge.” Therefore, that rang a bell for us and said, “Ah, here’s our key is that we give them knowledge.” First, we give them something, and then when they return, we can ask something of them. That’s how we ask them to become part of the studies.

“Let me just say this, Mollie and I are not
the lone rangers. We’re not doing
this by ourselves.”

Mollie Richards: I was gonna say, as far as you know, the population that we’re working with, it was kind of interesting. I was talking to my sister-in-law the other day, and she had a couple of people that she wanted us to connect with. This happens all the time now. My kids, the different people will call, say, “So and so is having a problem with their mother. They think they have Alzheimer’s, can you talk to them?” And I was talking to [my sister-in-law], she was saying that people now, and this is why what you’re doing is so good, will look at a video, they will go online. She said people in their 40s and 50s are going to go online and seek out information because that’s just what they grew up with. Whereas people in their 70s and 80s are less likely to go to the internet. So, what you’re doing and what you’re posting is something that young people are going to look at. We’re going to be, and we want to target these people that are in their 40s and 50s because of questions. They’re asking, “What direction do I go?” “I think my mom or my dad is losing their memory, and I want to help them. What do I do next?” I hadn’t really thought about it that way, being an older person, but she said, “Yeah, this is the way young people like to receive information.”

Being Patient: Honestly, there’s not a week when someone, a friend, or a friend of a friend contacts me and says, “Oh, I’m starting to worry,” because it is so prevalent. I’m glad you bring up that point about education. Because when we launched Being Patient, one of the things that struck me was the number of comments we get from people who are willing to participate in research because we’re explaining what the research is doing in a language they can understand. If you take the time and the energy to educate people, you see what the result can be. I love how you’re reinforcing exactly what we believe, which is education.

Ralph Richards: It’s amazing people can make [educational] and intellectual decisions. But, we also employ things like building trust and understanding cultural competencies. If you got to go in and talk to some African Americans, make sure that people that are going in and talking are also African American, or they’re not going to listen. With any culture, I think it’s important. I think respect, as I mentioned, trust,  and also, you ask yourself the question, or they’re asking, “Do you care about me?” “Are you here because of research and the grants that you’re making the money?” “Or do you care about me? And the community and the people of color?” If you can answer that question, then you have it. 

“It’s amazing people can make [educational] and intellectual decisions. But, we also employ things like building trust and understanding cultural competencies.”

Being Patient: Just to end this conversation, tell me a little bit about the conversations you have with your own children. Given that you both have Alzheimer’s on both sides of your family, what does that look like at home?

Mollie Richards: They’re very aware of me being tested. Because they’re adults, they probably track my cognition that in their own minds are spinning around. I talk about the importance of staying on top of things, keeping your brain healthy, and eating right. We do all the healthy living things, the exercise, and so forth. Mainly right now, they’re just bringing people to us that have questions, and they’re not having questions themselves, but they’re trying to live a healthy lifestyle. Because I have so many cousins, I have two first cousins that died last year and one first cousin that’s living with Alzheimer’s right now. There are others, and those are just the ones that I know about. I let them know, I let them be aware that this is something they really need to keep focused on and that there are resources out there that they can handle. I want Ralph to talk about our latest project.

Ralph Richards: Yeah, and I was gonna mention that, Molly. Thanks a lot. We know we’re not going to be here forever. So, one of my goals was to either write a book or a manual on how to do this, and that’s what we’ve done. We’re working with a company called MAP. That’s an acronym, and we got financed from the Gates Foundation. They provided videographers, and we gave them our story as to how to do things. There’s a QR code, you click on the QR code, and it tells you a little more in-depth about Alzheimer’s, in-depth about us and what we do. People can actually go online to get this now. One of the things we wanted to do is that we didn’t want to make this a money-making opportunity. We put it online so people, whenever they want to, can take a look at it again and at no cost to them.

Katy Koop is a writer and theater artist based in Raleigh, NC.