Alzheimer’s outreach center opens at NC A&T

by Jeff Sykes | @jeffreysykes

Alzheimer’s disease isn’t something most people like to think about. Despite it being the sixth leading cause of death, it’s still a vast unknown, living up to its reputation as a mystery. Research advances as more studies are completed, but up until a few years ago most of those studies included very few African-Americans.

The disease, like so many others, affects African-Americans at a higher rate than other populations, with blacks twice as likely to end up with Alzheimer’s as whites.

Added to that, a lack of openness and communication about the disease, and a lingering stigma in African-American culture about that older relative who acts out in public, often leaves many unwilling to talk about the disease or acknowledge its existence.

Dr. Goldie Byrd “” a lead investigator in the African American Alzheimer’s Disease Study “” has spent more than a decade trying to turn that around. Byrd, who is also the dean of the College of Arts and Sciences at NC A&T State University, came to A&T in 2003, the same year part of a similar Alzheimer’s study moved from Duke University, where the memory of lingering racial disparities on campus were a barrier to participation rates.

Duke’s study had collected more than 7,000 blood samples as part Alzheimer’s research, but only 46 samples had come from African-Americans. Following the move to A&T, Byrd and her team were able to collect 150 African-American samples as part of a pilot program. In 2007, the team secured a significant grant that, in collaboration with Vanderbilt, Columbia and Miami universities, has sought to gather 2,000 samples.

A&T’s team has collected more than 700 so far.

Because of the success of the team of researchers at A&T, Merck & Co. awarded the university $1 million last year to support a new Center for Outreach in Alzheimer’s, Aging and Community Health. The 9,900 square foot facility on Yanceyville Street next to the Revolution Mill is set for a grand opening and open house reception on Friday.

“This will be a very exciting and powerful day. It is our delight to be able to provide this level of resource to the community,” Byrd said in an interview this week.

Staff at the center exhibited that excitement this week during an interview that covered topics ranging from programs and services offered at the center to the mysterious, and often quietly endured, nature of the disease itself.

Relatively recent discoveries have revealed links between Alzheimer’s and diabetes and between hypertension and cognitive decline. The center’s Director of Educational Outreach, Dr. Rosalyn Lang, said researchers don’t know why Alzheimer’s occurs twice as often in African Americans, but that the thought is that because occurrences of other diseases are higher among African Americans it makes them more at risk for having cognitive issues.

“We’re still in the space of trying to figure out what is it exactly? Is it environmental? Is it genetic? How can we fight it?,” Lang said. “That’s the importance of having these clinical trials and getting people involved in them. Especially African Americans, because if you are talking about developing a program, but you only have a certain group of people in it, how do you know it will work for these other populations?” Lang works alongside Takiyah Starks, the center’s clinical research coordinator, and a group of other professionals to increase public awareness of the disease and combat the stigma associated with cognitive decline in the community.

“It’s called the Silent Epidemic in the African American community because it’s something we don’t talk about,” Lang said. “We don’t put the right words to it. We think it’s just normal old aging. Often, if we don’t know what to call it, or how to treat it, then we’re not going to get the right diagnosis, an early diagnosis, or be available for possible intervention or treatment.”

The Center for Outreach in Alzheimer’s, Aging and Community Health will offer a comfortable place where Alzheimer’s can be discussed and the community can learn about its symptoms and how it affects caregivers.

Starks said she often sees how the disease impacts caregivers. Several of the center’s team members have close relatives who have Alzheimer’s. Too many times caregivers are stigmatized, or become hesitant to share their experience in public.

“It tends to be silent. It tends to stay right there in the home, not discussed, just handled there versus getting information, going to the doctor, talking about it and getting help and relief instead of being in that one, confined space,” Starks said. “Here is a place where you can come get the help you need and talk about the disease.”

The center will offer community programming beginning next year. An executive director for the center will be announced next month. The center hosts an Alzheimer’s Support Group once a month. The enter just held the sixth Caregivers Conference, and a hands on learning lab for caregivers will be part of the center’s new programming.

The center will offer several other types of community health education, such as healthy aging and general wellness. A gerontology certificate will be offered as well.

Dr. Byrd said that improved literacy regarding Alzheimer’s and aging in general is critical to the community’s ability to cope with increased instances of the disease, especially as more people are being in a position of caregiving.

“Opening the center gives us a coordinated effort to advance research, and resources for learning about Alzheimer’s, aging and health,” Byrd said. “It will give the community an opportunity to expand its resource base. It gives our team an opportunity to be housed under one umbrella and offer more organized and expansive services for communities of people who are burdened with the disease and Alzheimer’s caregiving.” !