Building Trust to Find Better Answers About Alzheimer's

Alzheimer's disease — which robs elders of memory, thinking ability and eventually independence — disproportionately affects African-Americans. Studies vary, but most research shows that Alzheimer's disease is
14 percent to nearly 100 percent more prevalent in African-Americans than in Caucasians. And little is understood about this huge difference in prevalence.

Mayo Clinic doctors and researchers are taking steps to change that — in churches, sororities, community centers and other places where seniors gather to listen and learn how to keep their brain healthy as they age.

In 2006, Mayo Clinic in Jacksonville launched Live Well. Think Well., a pilot community outreach program to promote healthy brain aging. Floyd Willis, M.D., a Mayo family physician who led the effort, says the primary goal was to share information about memory loss, its disproportionate toll on African-Americans and how to minimize risk.

Floyd Willis, M.D., leads a Live Well. Think Well. group session at a Jacksonville Senior Center.

Good for the brain, good for the body

Dr. Willis says the gospel of healthy brain aging might sound like advice your grandmother would give: eat right, lose weight if needed, exercise your body and brain, manage stress, and stay connected to others.

"The good news, call it the cherry on the ice cream, is that if you lead a lifestyle that is good for the brain, that lifestyle is also good for the heart, kidneys and vascular system," says Dr. Willis. In fact, risk factors for vascular diseases — high blood pressure and diabetes — seem to be significant risk factors for Alzheimer's in African-Americans. And those conditions are more prevalent in African-Americans than in other racial groups.

Doctors, nurses and trained community volunteers have taken the healthy brain aging message to audiences throughout the community. In six months, they made 30 presentations, reaching 465 people. Countless more were reached through health fairs, direct mail and media coverage.

Doris Putman, a retired public health nurse, was eager to be a volunteer speaker because of personal experiences. She's kept her diabetes in control for 15 years with healthy choices. She's also seen how Alzheimer's can affect a family; her sister has the disease. "A healthy lifestyle might not prevent memory problems, but it can slow them down," she says. She also notes that audiences are more receptive when a peer shares experiences.

Live Well. Think Well. is more than a wellness initiative. It is also about advancing research to find better treatments and, eventually, a cure for Alzheimer's disease, and ensuring that the research represents all people. At Live Well. Think Well. presentations, audience members learn about research and how they can participate.

Mayo Clinic is at the forefront of research looking at ethnic differences in patients with Alzheimer's disease. About 400 Jacksonville-area residents are part of an ongoing Mayo study that looks at normal brain aging in African-Americans. One result: researchers published standards in 2005 to better diagnose Alzheimer's disease and other dementia in the African-American population.

"Many elderly African-Americans, especially those raised and educated in the South, endured significant disparities in educational opportunities," says John Lucas, Ph.D., the Mayo neuropsychologist who led the study. "Previous diagnostic tests for memory disorders did not take cultural and educational differences into account."

"When you go out to people on their territory — repeatedly — and treat them with dignity and respect, it begins to make a difference."
Pam Quarles

Thanks to research participation from members of the Jacksonville community, doctors nationwide now can use these new normal aging standards to better diagnose memory problems in African- American elders. But many more answers are needed, about treatment and, one day, a cure.

African-Americans underrepresented in research

Throughout Mayo Clinic, there are dozens of studies under way on Alzheimer's and memory disorders. Even in a diverse community like Jacksonville, African-American elders are underrepresented in many of Mayo Clinic's memory disorder research programs. It's not a surprise, says Pam Quarles, a member of the advisory panel for Live Well. Think Well. The panel meets to provide guidance to the outreach program.

"People might say you don't have to worry about what happened 50 years ago," says Quarles, who also serves on the Alzheimer's Disease Advisory Committee to the state of Florida's Department of Elder Affairs. But for people in their 60s, 70s and 80s, many may be reticent to participate in research because of examples of past poor care and unethical research involving African-Americans.

Live Well. Think Well. aims to build trust so more African-Americans consider participating in research. "When you go out to people on their territory — repeatedly — and treat them with dignity and respect, it begins to make a difference," says Quarles.

Mayo researchers hoped to recruit 54 African-American elders for several open studies on neurological and memory disorders during the six-month outreach program. Many of these programs had never recruited any African-Americans.

The initial response was encouraging, says Dr. Willis. About 80 individuals indicated interest in participating. Interviews and screenings are under way to determine if these individuals meet study criteria. "Frankly, it takes many decades to make inroads, where for hundreds of years, there have been barriers," says Dr. Willis. "To be inclusive of African-Americans in future prevention and treatment studies, we must build on these outreach successes and do even more."

Quarles, whose work with the Alzheimer's Disease Advisory Council puts her in contact with 13 state-supported memory clinics throughout Florida, says Mayo Clinic is at the forefront in outreach to elders in Florida. She hopes others follow Mayo's lead, both to advance research and to improve care for African-Americans who have Alzheimer's. She notes that African-Americans account for less than 1 percent of patient services provided at 13 state-supported memory clinics, which includes Mayo Clinic. Yet, African-Americans are affected by Alzheimer's disease more so than Caucasians.

Live Well. Think Well. is a step forward, ensuring that all people have access to care for memory disorders, and that research benefits people of all races and backgrounds. "Building trust is paramount," says Quarles. "And if Mayo is doing it, why can't others?"