Forget me not

The community room looks like the interior of any well-appointed modern house from Starmount to Summerfield, with ocean-blue walls, mahogany-style tables matched with high-backed chairs, a sleek metallic refrigerator and comfortable couches.

There’s one key difference: The dining room, kitchen, living area and bathroom are collapsed into one large room with no dividers. Located on the third floor of a repurposed textile building across the street from Revolution Mill, the community room at the Center for Outreach in Alzheimer’s, Age and Community Health, or COAACH, functions as a classroom for families learning how to take care of a loved one developing Alzheimer’s disease or dementia.

“The team wanted it to look like a home,” said Donna Bradby, a publicist at NC A&T University, “so you could cook a healthy meal, sit your loved one down at the table and then do things like transferring them to the bathroom and helping them brush their teeth.”

Bradby gestured toward the full-length mirror at the end of the room.

“My aunt, Annie Ruth Ingram, had Alzheimer’s,” Bradby said. “We stood in front of that mirror. She said, ‘Who is that lady?’ I said, ‘Oh, Aunt Annie Ruth. That’s you!’”

Annie Ruth’s husband, Charlie, passed away before she did, and it’s not uncommon for spouses to precede loved ones with Alzheimer’s in death. Caring for someone suffering from the disease, which progressively robs people of memory, cognition, muscle movement and personality, can take a heavy toll. Caregivers experience high levels of stress and cope with depression, often neglecting their own health and missing doctor’s appointments.

Those who take care of people with Alzheimer’s and other forms of dementia are twice as likely to report substantial emotional, financial and physical difficulties as other caregivers, according to the Alzheimer’s Association. Two thirds are women, and 34 percent are age 65 or older. A quarter of caregivers are considered a “sandwich generation,” meaning that they’re also taking care of a child under the age of 18.

Research has shown that Alzheimer’s is twice as likely to affect African Americans (and 1.5 times more likely to affect Hispanics) than non-Hispanic whites, but until about 10 years ago there was little research into why the disease strikes African Americans with such ferocity.

The answer is gradually coming into focus, thanks in part to the research of Dr. Goldie Byrd, the founding director of COAACH, which opened in 2014. A recent article by journalist and novelist Marita Golden in the Washington Post described the Greensboro center as “a kind of ground zero for innovative, cross-disciplinary and community-based responses to the disease.”

A complex interplay of environmental and genetic factors accounts for why Alzheimer’s inflicts a disparate toll on African Americans. An understanding of the interplay can help people make lifestyle choices that reduce the risk of the disease’s onset, and researchers hope that understanding genetic factors will lead to the development of drugs to treat it. Alzheimer’s medications currently only address symptoms, without preventing, curing or slowing the disease.

On the environmental side of the equation, a series of studies presented at the 2017 Alzheimer’s Association International Conference in London in July added to a growing body of evidence that racial inequities increase the risk of Alzheimer’s and other dementias. Researchers at the University of Wisconsin found that African Americans were 60 percent more likely than whites to experience a stressful life event such as losing a job, the death of a child, combat, or growing up with a parent who abused drugs, which correlated with deterioration in cognition later in life. Other studies presented at the conference found that people born in states with high infant mortality rates — a proxy for harsh early-life conditions — and neighborhoods disadvantaged by poverty, poor housing and limited educational and employment opportunities were more likely to experience poorer cognitive function and dementia late in life.

Despite the disease’s disparate impact, the science of how Alzheimer’s affects African Americans was woefully behind as recently as 15 years ago. Byrd joined the faculty at NC A&T as chair of the biology department in 2003, and that year she completed a sabbatical at the Duke Center for Human Genetics, where she helped initiate a study on Alzheimer’s. At the time, the university had 7,000 blood samples, but less than 50 were drawn from African-American volunteers.

“We wanted to increase our knowledge about Alzheimer’s, particularly underrepresented groups like African Americans and Hispanics,” Byrd said. “These groups had a disproportionate burden, but there was so little in the literature about Alzheimer’s in these groups, particularly Alzheimer’s relationship to genetics.”

As Byrd continued her research at her new post at A&T, the first challenge was to figure out how to overcome reluctance among African Americans to participating in studies.

“We began by going into the community and asking different stakeholders — lay people, the faith-based communities; we went to health fairs and barbershops — and we asked people if they would participate in a study,” Byrd recalled. “What would the barriers be? What would the motivations be?”

Distrust among African Americans due to the legacy of atrocities like the Tuskegee experiment — a project launched by the US Public Health Service in 1932 in which researchers studied black men with syphilis without their informed consent and without treating them for the disease — was an obvious hurdle. And while there are continuing reasons for African Americans and other underrepresented groups to distrust the medical establishment, Byrd emphasized that ethical research coupled with culturally calibrated outreach can overcome barriers.

“People struggle with lack of access and the indifference when they’re treated even in 2017,” Byrd said. “They notice when they go to the doctor and they don’t see people who look like them in 2017. There are recent studies that show that people of color don’t get the same level of care.

“African Americans will participate in studies,” she added. “Stereotypically, people think African Americans won’t participate because of these atrocities. There are very good reasons for there to be hesitation and concern. We have to take the time to communicate with them to make sure they feel comfortable. We can’t assume people who are mistreated are going to be at the front of the line unless we as researchers assure them that they’re safe, that we’re going to handle them and their specimens in an honest and respectful way, and we reassure them they can stop at any time.”

The family-support component that became a core pillar of the COAACH center emerged as natural extension of Dr. Byrd’s understanding that she needed to design a study that would earn the trust of African-American volunteers.

“The person I was working with — we agreed we would create an environment that specifically targeted African Americans and engaged them directly in what the study was, that would create learning opportunities for this community, that would keep them engaged and keep them in the loop around what’s happening with the research,” Byrd said.

Although COAACH opened in response to a need to engage African Americans in Alzheimer’s research, Byrd and other staff members emphasize that the programs at the center are open to people of all races.

“We created our COAACH center to assure not only African Americans but people of all races that we were there, and we weren’t going to get them into the study and leave,” Byrd said. “If people needed information about diabetes, which is linked to Alzheimer’s, they could call. If a church was having a health fair, they could call. We created a support group that people can attend; they don’t have to be African American. They can attend Lunch & Learn.”

Through Dr. Byrd’s efforts, the bank of data on African Americans with Alzheimer’s has dramatically expanded. As part of the Alzheimer’s Disease Genetics Consortium, which includes several other institutions, Byrd was part of a study that dramatically expanded the number of DNA specimens under review. In 2013, the consortium discovered that a variation in the ABCA7 gene that had previously been linked to Alzheimer’s was found to have a stronger link in African Americans than non-Hispanic whites.

Finding a gene link like ABCA7 gives researchers clues about what causes Alzheimer’s because variants might cause it to dysfunction and affect different populations in different ways.

In the hope of learning more about how genetics factors into the disease, COAACH is recruiting families with more than one member who has Alzheimer’s for an ongoing study. The center has collected samples from people in North Carolina, along with Virginia and New York.

“There may be other genes like ABCA7 that are associated with the disease,” Byrd said. “There may be [treatments] that are specific to one population and not to another. That’s important because if we only did research in one population everything ends up being generalized. Our hope is there will be therapies and interventions that are specific to populations and not generalized. The advantage of doing studies is that we’ll be much more inclusive and everyone will benefit.

“There are many studies and clinical trials going on right now,” she continued. “We don’t have any cure right now. We don’t have anything to slow the disease. There are drugs that can assist with the symptoms. We are very hopeful that the pharmaceutical companies working with research institutions will come up a drug that can halt or slow the disease.”