Dr. Goldie Byrd has spent years researching the genetics of Alzheimer’s disease, particularly among African-Americans, who are twice as likely to develop the memory-impairing disease as whites.
Byrd’s research team at N.C. A&T State University – in collaboration with multiple medical centers across the country – took nine years to recruit more than 4,000 African-Americans with Alzheimer’s for long-term study.
It took so long partly because they needed to build trust. Many blacks remain skeptical of scientific research in the aftermath of the Tuskegee syphilis experiment that mistreated black subjects.
As Byrd and her fellow researchers recruited subjects, they also found a lot of misunderstanding and embarrassment about Alzheimer’s itself.
“When we go around, particularly in rural areas… we find that people are not nearly as willing to talk about Alzheimer’s as they are, say, about cancer, high blood pressure and heart disease.
“This disease carries with it a stigma,” said Byrd, a biology professor and dean of the College of Arts and Sciences at N.C. A&T.
“If you ask people, they would rather lose a limb than lose their mind, if you will.”
Byrd and her colleagues realized the need for better education and awareness. So as an outgrowth of their research, the team created “Keeping Memories Alive,” a project to bring better understanding about Alzheimer’s to patients, caregivers and policy makers – not just African-Americans.
They’re launching a 10-city national tour, and the first gala and educational forum will be in Charlotte Saturday at the Mint Museum Uptown.
It will feature a performance by Ruben Studdard, a past “American Idol” winner, who has written a song, “I Know It’s You,” based on his experience with a relative with the disease.
One of the goals of “Keeping Memories Alive” is to teach caregivers how to take care of themselves as well as their loved ones.
“A person with Alzheimer’s can live for decades,” Byrd said. Loved ones of Alzheimer’s patients “are some of the most overworked and overburdened caregivers of all.”
The message is also about prevention.
“We want people to be more health conscious,” Byrd said. “We don’t really know how to prevent (Alzheimer’s). But we do know that a healthier body in general means a healthier brain.”