Phyllis Wilson knows all too well the devastating impact Alzheimer’s disease can have on an individual and the family.
Growing up, Wilson watched Alzheimer’s disease take her mother’s life. Her painful memories of watching her suffer from the symptoms of the disease remain with her to this day. When she first started noticing signs of the disease in herself, she enrolled in a clinical trial at the UK Sanders-Brown Center on Aging, not just for herself, but for her children and grandchildren.
“I worry about what that did to my family. It’s hard to watch; I can’t describe it. I know I don’t want to be in that predicament,” Wilson said. “I read about a clinical trial at the Sanders-Brown Center at UK and I wanted to get involved. It won’t help me, but it might help my kids and grandkids.”
Alzheimer’s disease is an irreversible, progressive brain disorder that slowly destroys memory and thinking skills, and eventually the ability to carry out simple tasks. More than 5 million people in the U.S. are currently living with the disease, and that number could rise as high as 16 million by 2050.
African-Americans like Wilson are two times more likely to develop Alzheimer’s disease than Caucasians and are less likely to have an early diagnosis of their condition, which means less time for treatment and planning.
In an effort to the limit the toll Alzheimer’s takes in the African-American community, Sanders-Brown recently teamed up with The Balm in Gilead to raise awareness about memory-related disorders. The Balm in Gilead is a faith-based organization that addresses prevalent public health issues among African-Americans.
As an aspect of the partnership, Sanders-Brown developed educational materials to be distributed in churches and other faith-based organizations during The Balm in Gilead’s Memory Weekend event. Memory Weekend launched in Lexington on June 11 and was celebrated in 25 churches across Kentucky.
Awareness can lead to early diagnosis
There are no known genetic factors to explain why African-Americans are at an increased risk for Alzheimer’s. However, the known risk factors for the disease, such as high blood pressure and diabetes, are more common in African-Americans.
The Alzheimer’s Association reports that African-Americans are less likely than Caucasians to have a formal diagnosis of their condition because they are less likely to report symptoms of memory loss to their doctors. That’s why spreading awareness about Alzheimer’s disease among African-Americans in non-medical settings is crucial to early diagnosis.
Markeda Yarbrough, a clinical research assistant at Sanders-Brown, says the church is the single most important influence in bringing the African-American community together.
“It’s about building trust in a community where there is a great deal of mistrust of the medical community,” Yarbrough said. “Church members will often go to other church members with health concerns. It’s a place where members can go to other members who are knowledgeable and caring.”
Yarbrough said that African-American women tend to be screened for Alzheimer’s four to five times more than African-American men, who are more reluctant. If not diagnosed in the early stages, the disease may progress so far that treatments aren’t as effective.
Wilson says although she’s not comfortable approaching people to initiate a conversation about Alzheimer’s disease, she has no problem talking about it if someone were to ask her.
“I don’t want other people to have to deal with this disease,” she said. “When I think about what it did to my family, it kills my soul.”
- Last year, the UK Sanders-Brown Center on Aging was redesignated as an NIH Alzheimer’s Disease Center. Learn more about this prestigious designation and what it means for our patients and their families.
- Alzheimer’s disease usually affects people who are 65 or older. If there’s a senior in your life, be aware of these signs and symptoms of the disease.