Mobilizing African-Americans Against Alzheimer's
The impact of Alzheimer's disease is devastating, not just on those with the illness, but on their families as well. Nowhere is this felt more keenly than in the African-American community.
Alzheimer's disease, a degenerative brain disorder usually occurring later in life, affects all demographic groups, but is more prevalent among African Americans than Caucasians. Although researchers have not yet identified the exact genetic or environmental reasons for this disparity, African Americans are at greater risk for hypertension, high cholesterol and diabetes, and these conditions are associated with an increased risk for developing Alzheimer's.
Henry Edmonds, director of the African-American Community Outreach Program (AACOP) at Duke University Medical Center's Bryan Alzheimer's Disease Research Center, says the group's efforts are focused on the family, since the burden of caring for Alzheimer's patients most often falls on family members.
Edmonds says that, in addition to the impact of caregiver duties, first-degree relatives of African Americans with Alzheimer's also face a greater risk of developing the condition themselves.
"If a person has Alzheimer's, their caregiver and other persons in the family may also be affected by Alzheimer's," says Edmonds. "What we're trying to do is get families involved in the studies, not just the affected person but other members of the family."
According to Edmonds, there are a number of complex issues involving social, cultural and financial barriers that have led to African Americans' being under-represented in groups receiving care for Alzheimer's and other forms of dementia at medical centers.
"For many African Americans, Alzheimer's is a very new disease. For a long time, caregivers have taken care of their elderly loved ones at home, especially with nursing home expenses so high. The real burden fell on the family caregiver. Also, African Americans don't see doctors as often as other groups do, due in part to a historical distrust of the health-care system."
One of AACOP's goals is to increase the number of African Americans participating in clinical trials of new treatments, says Edmonds.
"The African-American community has been largely under-represented in drug studies and clinical trials," he explains. "Our job is to help educate this community about Alzheimer's disease and to increase participation in clinical trials. Although there is no drug to cure Alzheimer's, medications can help manage the condition and improve the quality of life for those with the disease. They alleviate some of the symptoms and prolong the mobility and life of the person as much as possible," says Edmonds.
AACOP works with state representatives, city and county officials and other community leaders across North Carolina. These leaders, in turn, help to disseminate information about Alzheimer's disease through programs in their neighborhoods. Edmonds adds that medical-faith partnerships with ministers have been an especially effective way to reach African-American families.
"I think this is one of the best ways to reach our community," he says, "to inform the pastors and get them on our side, because people trust their pastors, they trust the church."
"We are also trying to increase participation in the brain donation program," says Edmonds. "The only way that you can know conclusively that someone has Alzheimer's is through brain autopsy. African Americans historically have not been accustomed to doing autopsy of any kind. A lot of groups are working in the African-American community to increase participation in this and other organ donation programs."