Studies show that older African Americans are almost twice as likely as whites to develop Alzheimer's disease for genetic, biological and socioeconomic reasons. Diet and even the stress of experiencing racism can be factors. Yet relatively few African Americans want to talk about Alzheimer's, which is the leading cause of dementia. For historical reasons, even fewer want to participate in clinical research trials that could deliver benefits to themselves and future generations. You just don't hear about Alzheimer's in the black community. There's some stigma,” said Stephanie Monroe, a**ociate director of the African American network at the D.C.-based nonprofit USAgainstAlzheimer's, the event's organizer. The organization was founded in 2010 by George Vradenburg, AOL's former chief counsel, and his wife, Trish, a writer and former journalist. The effort to engage African Americans on Alzheimer's comes as the U.S. population ages and becomes more diverse. More than 5 million Americans are living with Alzheimer's, a number expected to more than triple by 2050, according to the Alzheimer's Association. In the Washington area, the number of people 65 or older with Alzheimer's is expected to grow by nearly 40 percent, to 329,000, by 2025. Alzheimer's is like and encourage them to seek help for loved ones who may suffer from it. As part of the event, the network attempts to recruit audience members for a huge federally funded clinical trial. Yet even among those interested enough to attend the play, several expressed reluctance to participate in medical research. All of them agreed, with one word: Tuskegee, and its shameful legacy. That refers to a 1932 medical study for which the federal government enlisted about 400 low-income black men suffering from syphilis without informing them of their options and allowed some to go untreated after penicillin became available. “I think for very good reasons in minority communities there is distrust of clinical trials,” said Reisa A. Sperling, a Harvard Medical School neurology professor and director of Alzheimer's research at Brigham and Women's Hospital who encouraged audience members to enroll in her research. Sperling is the principal investigator of a study involving 60 sites in the United States, Canada and Australia attempting to learn whether regular transfusions of an antibody will stop the cascading series of events that lead to memory loss, cognitive impairment and, eventually, d**h. The A4 study, as it's called, targets beta amyloid, a protein whose buildup is the precursor to Alzheimer's. Aging adults who have signs of amyloid buildup but no symptoms of cognitive impairment receive infusions of an antibody in the hope of sweeping the deposits from the brain. The study is funded in part by a $36 million grant from the National Institutes of Health, which has stipulated that organizers must work to boost minority representation in the trial. “We know for a fact that it does catalyze or promote development of the disease and that African Americans have higher occurrence of the gene,” said Thomas O. Obisesan, a physician and researcher at Howard University. Oddly, the risk of developing disease a**ociated with that gene in African Americans is less than the risk a**ociated with that gene in whites, Obisesan said. But that is perhaps because fewer blacks live long enough to develop Alzheimer's, often because of other ailments, such as cardiovascular disease, he said. What's more, researchers recently identified another gene that appears to raise the Alzheimer's risk for African Americans, Obisesan said. The gene ABCA7, which is involved in cholesterol metabolism and acts as a transporter between cellular membranes was found to make blacks about 1.8 times as likely as whites to develop Alzheimer's. Other scientists think that African Americans may be at greater risk for Alzheimer's because they also are at greater risk for diabetes, hypertension and cardiovascular disease, which contribute to development of the disease. Socioeconomic factors, such as more limited access to medical care and poor diet, also play a role. “It's very clear that these issues are related to poverty,” said Laurie M. Ryan, chief of the Dementias of Aging Branch in the National Institute on Aging's neuroscience division. Another possible factor, researchers said, is the stress that comes from enduring discrimination. Stress has long been known to raise the risk of Alzheimer's, and Lisa Barnes, a neurology professor at Rush University Medical Center, said that this finding has been borne out in her work, an epidemiological study focusing on African Americans since 2004. “I think the most striking thing is the importance of social factors, such as perceived discrimination, social resources and purpose of life,” Barnes said. Lower education levels among blacks also heighten risk. Researchers hypothesize that a limited education fails to create the rich network of connections among brain cells used in memory and cognition. When dementia begins, minor deterioration has a bigger effect. “Not many African Americans are aware that Alzheimer's disease,” said Kebreten F. Manaye, a physician and neuroscience professor at Howard University. “And so they don't seek help at an early age when the disease happens.” The survey for the Alzheimer's Foundation of America also found that African Americans were more concerned about the “stigma” of Alzheimer's, an attitude held by both victims and their caregivers that led to delays in seeking medical treatment. A different study, published in 2005 in the Journal of the American Geriatrics Society, found delays as long as seven years, at least in part because it was difficult to face the possibility that the patient might have dementia. Racial Disparities In Alzheimer's Disease a growing body of evidence suggests that the prevalence of cognitive impairment or Alzheimer's disease may be two to three times higher among older African Americans than in older non-Hispanic whites. Yet results from large population-based studies of the incidence of Alzheimer's disease (that is, new cases of disease) have been mixed. The discrepancy in the literature may stem from the fact that substantial racial disparities exist for cognitive test performance, with older African Americans tending to perform more poorly, on average, than older non-Hispanic whites. Because level of achievement on cognitive performance tests is still the primary standard for making an Alzheimer's diagnosis, these marked disparities often present unique challenges for diagnosing dementia in older African Americans. Researchers have used a number of strategies to adjust for poor performance on cognitive tests, but given evidence that African Americans with Alzheimer's disease decline more slowly and have a longer survival rate compared with non-Hispanic whites, it is possible that relying on performance on cognitive tests measured at a single point in time is causing Alzheimer's disease to be overdiagnosed in African Americans. A better strategy, when possible, is to examine change in cognitive function over time. Given that the development of Alzheimer's disease entails a progressive decline in cognitive function, using longitudinal data where cognition is measured over multiple time points—relieves the challenge of interpreting performance based on a single point in time. Further, the person serves as his or her own control, rather than comparisons with groups that differ on factors that can influence performance (for example, socioeconomic status and health). In fact, studies that compare African Americans to non-Hispanic whites on rates of change over time typically find no or very small differences. Thus, there remain important gaps in the medical literature, and consequently also in understanding of factors that influence Alzheimer's disease among African Americans. Risk Factors In African Americans Disease prevention, or delaying disease onset, is likely to be the critical component to reducing racial disparities in Alzheimer's disease. However, disease prevention first requires the identification of risk factors for cognitive decline and dementia, and subsequently the development of strategies to modify behavior or intervene with treatment. Finally, relatively few studies have examined whether psychosocial risk factors influence risk of disease among African Americans, although many studies have examined these factors in non-Hispanic whites. For instance, there is evidence that living in rural conditions in childhood is related to an increased risk of Alzheimer's disease, and one study reported that low levels of education or poor-quality education increased risk of Alzheimer's disease. However, neuroticism, or the tendency to experience psychological distress, was not related to risk of Alzheimer's disease in African Americans, although it was related to the risk of Alzheimer's disease in non-Hispanic whites. In contrast to the limited evidence on the relationships between psychosocial factors and incidence of Alzheimer's disease, more studies have examined risk factors for cognitive decline in African Americans. As many risk factors for cognitive decline operate the same in African Americans and non-Hispanic whites. For example, results from population-and community-based studies have demonstrated that current smoking and greater depressive symptoms are related to a faster rate of cognitive decline, and the effects do not differ by race. Similarly, both cognitive activity and social networks reduce the rate of cognitive decline effects that are the same in African Americans and non-Hispanic whites. In contrast, there are a few risk factors that have been found to operate differently in African Americans and non-Hispanic whites. For example, early-life social adversity or disadvantage was found to be related to a slower rate of decline among African Americans but not non-Hispanic whites, and higher social engagement was related to a slower rate of decline in non-Hispanic whites but not African Americans. Given that cognitive decline is the hallmark of Alzheimer's disease, these risk factors may provide clues to racial differences in the development of Alzheimer's disease. Racial Differences In Clinical Manifestation Of Disease. Some studies suggest that the clinical manifestation of Alzheimer's disease may differ for African Americans compared to non-Hispanic whites, in that the former often present with an earlier age of onset and exhibit greater severity of symptoms at the time of presentation. This is consistent with the fact that compared to non-Hispanic whites, minorities are less likely to seek medical attention, and when they do, they present later in the disease course. It has also been documented that African Americans are less likely than non-Hispanic whites to receive Alzheimer's treatments, such as acetylcholinesterase inhibitors or memantine. To what extent these clinical manifestations are due to cultural differences in beliefs about the causes of Alzheimer's disease, mistrust and experiences of discrimination in the health care setting, or culturally determined views on health behaviors and risk perceptions has not been examined, but there is growing awareness that these social factors may influence at least some of the disparities in clinical presentation and treatment. Challenges For Future Studies With Older African Americans. Because Alzheimer's disease diagnosis, treatment, management strategies, and prevention studies have focused almost exclusively on the non-Hispanic white population, progress in research on the clinical and neuropathologic characteristics of Alzheimer's in minority groups has been limited. Understanding the biologic pathways linking risk factors to cognitive function is essential for the development of effective preventative therapeutic interventions. It thus is necessary to move toward studies that can address the biologic mechanisms that underlie cognition and identify modifiable risk factors for prevention, including comorbid conditions (for example, vascular disease), social context, health behaviors, and environmental factors in order to significantly advance research on African Americans and Alzheimer's disease. The recruitment and retention of African Americans in research studies has been challenging, because of cultural and historical barriers, particularly for neurobiologic studies. To improve efforts in this area, recruitment for research must be concentrated on effectively communicating the purpose and intent of research in a way that appreciates the value of the research for the person as well as his or her community. Building on a foundation of shared responsibility and establishing mutually beneficial long-term relationships with the African American community is the single most important strategy for increasing participation in research studies, particularly those that require invasive procedures or clinically oriented data collection. As documented in several studies, networking with gatekeepers of the community (such as leaders of community organizations and pastors) allows researchers to gain insight into the concerns of the community and strategies to engage the community in a way that is mutually beneficial. Similar to community-based participatory research methods, Alzheimer's disease research with African Americans requires a constant presence in the community by researchers who can provide culturally tailored and culturally sensitive educational programs that focus not just on the specific research studies at hand but, more broadly, on the value of research and the benefits to the community now and in the future. It is clear that inclusion of older African Americans, with a wide spectrum of educational and life experiences, in research studies is vital to lessening the impact of the disparities in Alzheimer's risk and disease burden and critical to filling an important gap in knowledge on the transition of healthy aging to dementia in this high-risk population. BE PRESENT IN COMMUNITIES. The second recommendation is for clinicians and academics to physically go to the communities they serve, instead of waiting for community members to show up at clinics and academic institutions. To attract people without dementia, community-based recruitment strategies must be used. Innovative approaches to overcome barriers that often deter African Americans from participating in research have been found to be useful in many studies. For example, it is important to employ African American team members with extensive ties to the African American community. In addition, providing culturally sensitive community education or ancillary services, such as health screenings or educational presentations, is often viewed as mutually beneficial and empowers communities to be more proactive about their health and health concerns. These approaches as well as the recruitment and retention efforts mentioned earlier are expensive, time consuming, and labor intensive, but they are absolutely necessary to engage a disenfranchised population with high levels of mistrust. The implications of these discoveries are enormous for African-Americans, among whom vascular disease and its risk factors are disproportionately present. Effective therapies for primary and secondary prevention of vascular disease already exist including cholesterolloweringd** (statins) and anti-hypertensive medications. Now, observational studies indicate that these d** may also protect against cognitive impairment and Alzheimer's disease. This is a line of scientific inquiry that must be pursued as aggressively as possible. The epidemic of Alzheimer's will continue to spread over the next 30 years, as the number of African-Americans entering the age of risk more than doubles to 6.9 million. There is no time to waste. The number of African-Americans age 65 and over will more than double by 2030, from 2.7 million in 1995 to 6.9 million by 2030. The number of African-Americans age 85 and over is growing almost as rapidly, from 277,000 in 1995 to 638,000 in 2030 and will increase more than five-fold between 1995 and 2050, when it will reach 1.6 million. Genetic and environmental risk factors for Alzheimer's disease seem different in African-Americans. Genetic risk factors seem different in African-Americans and white Americans. APOE genotype alone does not explain the increased frequency of Alzheimer's disease in older African-Americans. Data from a large-scale longitudinal study indicate that persons with a history of either high blood pressure or high cholesterol levels are twice as likely to get Alzheimer's disease. Those with both risk factors are four times as likely to become demented. Sixty-five percent of African-American Medicare beneficiaries have hypertension, compared to 51% of white beneficiaries. They are also at higher risk of stroke. (Data from the Current Medicare Beneficiary Survey). African-Americans have a 60% higher risk of type 2 diabetes a condition that contributes directly to vascular disease. African-Americans have a higher rate of vascular dementia than white Americans. Screening and a**essment tools and clinical trials are not designed to address the unique presentation of Alzheimer's disease in African-American.