African-Americans make up 13% of the population nationwide, yet they bear a third of the cost of caring for loved ones with Alzheimer’s.
While Alzheimer’s disease is the most common, it’s not the only form of dementia, a family of disorders that impact memory, judgement, and day-to-day life.
Malcoma Brown-Ekeogu’s husband, Kenneth, was diagnosed with frontotemporal dementia in 2016. She said caring for Kenneth cost their retirement fund.
Brown-Ekeogu misses Kenneth even though he is still here.
“My husband is my gift. Regardless of where he is, mentally, he’s my gift,” she said. “He still has a heart of love. As far as being able to do the day-to-day things, to remember to take a bath, to not put all of his food in his mouth at the same time, to go to the restroom on his own, to clean himself to have a conversation. Those are the things that I miss most about him.”
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Brown-Ekeogu, herself diagnosed with Crohn’s disease, is his sole care partner. She said Kenneth stopped working when diabetes took his sight.
“Then, when this happened with his brain, you know, I knew that my time in the workforce was not going to be long, because he was beginning to need more care,” she said.
Women are most likely to be the care partner.
In 2020 alone, two-thirds of care partners were women, like Brown-Ekeogu. Those women provided nearly $260 billion in unpaid care, according to 2021 data from the Alzheimer’s Association.
“My struggle for myself is to keep my energy up to make sure that I’m you know, I’m taking vitamins, everything I can do especially with the pandemic that I can be as safe as possible,” Brown-Ekeogu said. “For him, I always say he’s easy, like Sunday morning because he’s very easygoing, he doesn’t complain, but to care for him that burden I carry it. That’s mine to carry.”
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Dr. Fayron Epps, an assistant professor at Emory University, works with families like the Ekeogus to learn more about their specific needs.
“I primarily focus on what is the education that I can develop and provide to them and other non pharmacological interventions to support them on their journey,” Epps said.
“Vascular dementia is from disruption with the cardiovascular system. And there’s a lot of conditions that cause that disruption. Diabetes is one of them along with hypertension, which leads to strokes, you have kidney problems that also can lead to vascular problems,” Epps said. “Especially in the Black community, as relates to all the disparities surrounding all health illnesses, but specifically as it relates to dementia, we do need to know early what is our baseline what is going on and so we can seek help.”
As a member of Nigerian and African American communities, Ekeogu-Brown said finding resources and support was not easy.
“The African community, they didn’t want to understand it. They didn’t, they didn’t believe it. That’s not what’s going on with him. That’s not so. So, the door was closed.”
She said the African American community will often see a problem with their loved one and choose not to bother them.
“You have to get involved, you know, ask those questions.”
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Involvement is what Epps hoped to achieve through her program, Alter.
Alter partnered with Black churches to raise awareness about dementia and Alzheimer’s and support for families dealing with the diseases.
“Our goal is to make sure that they have the resources and the support that they need to be able to support their parishioners, and, and those individuals that live in the community that they serve,” Epps said.
Epps and Emory partnered with UsAgainstAlzheimer’s and Brain Guide.
Brain Guide is a simple and confidential questionnaire that can be taken online or over the phone.
Stephanie Monroe, executive director of African Americans Against Alzheimer’s, a part of UsAgainstAlzheimer’s, said the issue of dementia and Alzheimer’s cannot be ignored.
“It’s bankrupting our families and putting our generation’s ability to age well as others at significant risk,” Monroe said.
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In Georgia, the most recent data shows that about 150,000 people aged 65 and older have Alzheimer’s disease. Eleven percent of people over the age of 45 have symptoms of Dementia and Alzheimer’s.
In Cherokee County, the prevalence rate for African-Americans is about 9%. In DeKalb, it’s about 6.3% and in Fulton, it’s about 7%, according to UsAgainstAlzheimer’s.
The Brain Guide questionnaire will give people what they need to take the next step.
“Should you see a doctor? Are there other tips that you can engage in if you’re at a stage where maybe there’s some alarm?” Monroe said.
Epps said people must put aside their fear of the unknown. She said a recommendation to follow up with your physician is not a dementia diagnosis. It could be something as simple as a vitamin deficiency.
“Please do not be feel fearful. I think as the Black community, we use that fear, and we don’t seek out assistance and in an end, when things all hit us, it’s too late for anything,” she said.
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Brown-Ekeogu said Brain Guide is a great start, but there needs to be follow through.
“Once those questions are answered, then you need to move on whatever those answers are. it’s hard to get someone to listen sometime. You have to be persistent, don’t stop knocking on doors, don’t stop asking questions, even if it doesn’t sound right. Keep knocking,” Brown-Ekeogu said.
To take the Brain Guide questionnaire visit Mybrainguide.org or call 855-272-4641.
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