African-Americans are more likely to develop Alzheimer’s disease than whites. A new national program targets this dangerous disparity with community-based health education.
The math couldn’t be simpler — or crueler. African-Americans make up just 12 percent of the U.S. population, yet they are twice as likely as whites to develop Alzheimer's disease and 40 percent less likely to be properly diagnosed and treated. So when the long-forecasted “Alzheimer’s bomb” goes off in the aging American population, the faces will be disproportionately African.
Now, six medical centers around the country are teaming up with African-Americans to raise awareness about the causes, symptoms, treatment, and prevention of Alzheimer’s disease. A true grass-roots effort, the National African-American Alzheimer’s Diseas Health Literacy Program is working closely with black churches, social service agencies for seniors, and other community institutions to get the message out.
Robert P. Friedland, M.D., and colleagues direct the project from Case Western Reserve
University in Cleveland with grants from Pfizer Inc. and Forest Laboratories. They are using the money to create health education programs at Case Western and five other urban areas with large populations of elderly African-Americans:
- The University of Southern California Alzheimer’s Disease Research Center, Los Angeles, California.
- The Rush Alzheimer’s Disease Center, Chicago, Illinois.
- The Indiana Alzheimer’s Disease Center in Indianapolis.
- The Memory Disorders Project at Rutgers University, Newark, New Jersey.
- Howard University, Washington, D.C.
- Friedland and his colleagues have promoted Alzheimer’s awareness in the black community since 1994, reaching out at churches, Sunday schools, shopping malls, community centers, and even beauty parlors and barbershops. They have also studied genetic factors in Alzheimer’s disease.
Case Western researchers measured the frequency of an Alzheimer’s risk gene, ApoE4, in African-Americans and in the Kikuyu ethnic group of Kenya. But curiously, although the gene is more prevalent in the native Africans than in African-Americans, the Kikuyu’s actual risk of developing Alzheimer’s is lower than in non-Hispanic white and African-Americans.
Surely something is at work besides genes. The scientists surmised that something about the Kikuyu lifestyle must protect them from dementia. There’s a lot of evidence that lifestyle helps to determine overall risk for Alzheimer’s disease. Cardiovascular risk factors top the list.
The Kikuyu are physically active vegetarians with low rates of diabetes, hypertension (high blood pressure), heart disease, and obesity. In contrast, cardiovascular disease and stroke are the 1st and 2nd leading causes of death in African-Americans. One-third of black Americans have hypertension. High-fat diets, diabetes, and obesity are also common.
The bottom line: Genetic research suggests that elevated Alzheimer’s risk in African-Americans is largely the result of risk factors such as hypertension, diabetes, heart disease, high cholesterol, obesity, smoking, high stress levels, low levels of education, and lack of participation in mentally stimulating activities. These risk factors constitute a public health crisis. But they also represent a recipe for prevention. By addressing health risk factors, African-Americans can lower their risk for Alzheimer’s disease while living a longer, healthier life.
On the grapevine
To help get the message out, Case Western held a public conference in 2004, “What’z Up on the Grapevine: Memory Loss, Health, and Research.” They hoped to see 200 people sign up, but a total of 268 attended and 50 more were on a waiting list. The conference served as a model for similar public programs at the other five national project centers.
The Newark project center held its first community meeting October 17 on the Rutgers University campus. About 200 people attended the half-day program, including 50 senior-care professionals from community-based organizations. Speakers discussed Alzheimer’s disease risk factors, memory fitness and aging, and the importance of physical fitness to healthy aging.
2008, the Newark program will take the message directly to African-American seniors in a series of 45-minute lunchtime presentations at Newark-area churches by the program’s community coordinator, Peter Amua-Quarshie, M.D. The Case Western group found such “lunch and learn” programs a very effective way to educate the community about brain aging and Alzheimer’s.
Training the trainers
The presentations struck a chord with attendees from the New Community Corporation, a community development group serving Newark’s African-American community. Leslie Leonor, assistant director for community relations, says NCC is developing a new Alzheimer’s program for residents in seven non-profit senior housing units in Newark.
“When the doctor diagnoses a patient with the early stages of dementia, we need to do something to enhance the resident’s memories,” Leonor explains. “We see seniors deteriorating and nothing is being done.”
NCC wants its senior residents with dementia to function better and have a greater understanding of Alzheimer’s disease. To assist in this effort, four NCC care coordinators will attend a special seminar March 5 on the Rutgers campus, held by the Newark project center.
In the seminar, 20 senior care professionals will learn how to create and conduct community education programs about brain health and memory fitness. Leading the seminar is Cynthia Green, Ph.D., an assistant clinical professor at Mount Sinai School of Medicine in New York and author of Total Memory Workout: 8 Easy Steps To Maximum Memory Fitness.
At the end of the seminar, the staffers will have the knowledge and resources to teach community elders about memory fitness. They will also learn how to recognize memory disorders and how to refer people for further diagnosis. Michelle Papka, Ph.D., co-director of the Memory and Cognitive Disorders Program at the Atlantic Neuroscience Institute at Overlook Hospital in Summit, New Jersey, will provide this training.
Perhaps the toughest task ahead for the National African-American Alzheimer’s Disease Health Literacy Program is dispelling persistent myths in the African-American community that work against early diagnosis and treatment.
One common misperception is that forgetfulness and disorientation are “normal” aspects of aging. This makes family members less likely to seek a doctor’s opinion when parents or grandparents start to decline mentally. Also, they may see no point in taking action if they view Alzheimer’s as an untreatable death sentence.
But if people don’t enter the medical system, they can’t take advantage of the help doctors can offer. For example, Alzheimer’s is not the only cause of memory impairment. It can sometimes be a reversible condition, like depression or thyroid disease. Proper testing and medical evaluation can reveal this fact.
However, if the diagnosis is dementia, people can still benefit. For one thing, patients and their families will have more time to arrange for proper treatment and caregiving. They can tap into resources available in the community, such as education and support services for new caregivers. Alzheimer’s medications are more likely to benefit the patient earlier in the course of the disease.
Last but not least, early diagnosis allows for participation in clinical trials of new tests and treatments for Alzheimer’s disease — a chance not only to receive a potentially helpful treatment, but also to participate in the search for a cure.
- “Cultural diversity in Alzheimer’s disease,” by Helena C. Chui and others. (Alzheimer’s Disease and Associated Disorders, October-December 2005, Vol. 19, No. 4, pp. 250-255.)
- “Evaluation of risk factors for Alzheimer’s disease in elderly East Africans,” by Rajesh N. Kalaria and others. (Brain Research Bulletin, 1997, Vol. 44, No. 5, pp. 573-577.)
- “Ethnic differences in acetylcholinesterase inhibitor use for Alzheimer’s disease,” by Kala M. Mehta and others. (Neurology, July 12, 2005, Vol. 65, pp. 159-162.)
- “Risk of dementia among white and African American relatives of patients with Alzheimer disease,” by Robert C. Green and others. (Journal of the American Medical Association, January 16, 2002, Vol. 287, No. 3, pp. 329-336.)