This past weekend, Michael Cerullo, a well-known and highly respected licensed mental health counselor in Rhode Island (and a friend of Connelly Law Offices, Ltd.), sent us information on an innovative strategy that researchers at Brown University are using to seek research participants from a group who are disproportionally affected by Alzheimer's disease - African Americans.
"It has long been known of the disproportionate numbers when it comes to the development of Alzheimer's disease among African Americans when compared to Caucasians," said certified elder law Attorney RJ Connelly III. "The Alzheimer's Association has called this health crisis among African Americans the 'Silent Epidemic of Alzheimer's Disease' and is an issue that we must take seriously if we are to make progress against this deadly disease."
According to the Alzheimer's Association, "The epidemic of Alzheimer’s will continue to spread over the next [few decades], as the number of African Americans entering the age of risk more than doubles to 6.9 million. There is no time to waste."
Alzheimer's and African Americans
When it comes to African Americans and Alzheimer's disease, this group is much more likely to develop the condition than Caucasians, but once they receive a diagnosis, they experience a slower cognitive decline. So, the question becomes, why does this group have this elevated risk? There may be several factors that could explain this.
First, African Americans have higher rates of cardiovascular risk factors such as high blood pressure and diabetes, which are also risk factors for the development of Alzheimer's. Chronic high blood pressure is known to damage blood vessels in the brain which in turn limits the amount of oxygen and other nutrients which are needed for proper brain functioning. Diabetes affects the way glucose; the brain's fuel is used. A combination of these changes may result in lower cognitive scores as well as contribute to the elevated Alzheimer's risk.
Secondly, on a genetic level in this community, the APOE4 gene appears to be a factor. There are three variants of APOE (2, 3, 4) and each person has two copies. Having one or two copies of APOE4 increases the risk of Alzheimer’s disease in Caucasians compared to having two copies of APOE3. Several studies suggest that APOE4 is more prevalent in African Americans than in Caucasians. Whether APOE4 increases the risk of Alzheimer’s disease in African Americans is unclear. Some studies show that APOE4 does not increase Alzheimer’s risk in African Americans, while others suggest it does.
Finally, one theory suggests that African Americans are especially vulnerable to the wear and tear that comes with chronic stress due to factors such as socioeconomic status, discrimination, or psychological stress. This chronic stress could also be a risk factor for cognitive decline. To explain this further, when someone is in a dangerous or stressful situation (“fight or flight” response - something we will discuss more in this Sunday's blog about caregiver stress), the body releases stress hormones that increase fuel and blood flow to the muscles while suppressing the immune system. Usually, the body returns to its normal state after the stressor is gone. This is not the same with chronic stress, sometimes called cumulative stress.
"...one theory suggests that African Americans are especially vulnerable to the wear and tear that comes with chronic stress due to factors such as socioeconomic status, discrimination, or psychological stress."
Chronic or cumulative stress, which is the result of low socioeconomic status, discrimination, or psychological stress may decrease the body’s ability to return to its normal state, meaning that the body is always in a state of elevated hormones and the negative effect on the body tends to increase with age. This type of stress may be associated with several negative health conditions such as hypertension, diabetes, cardiovascular disease, and memory impairment.
Given what we know about Alzheimer's disease and African Americans, why does there appear to be a dearth of research on this group? The answer is this, although they are over-represented when it comes to developing the disease, they are very much under-represented when it comes to Alzheimer's disease studies.
In a recent report, it was stated that in eighteen observational studies, only 7% of the study participants were African American. It is imperative that minority participation increases so that researchers can gain a better understanding of the "how and why" Alzheimer's affects certain populations and which interventions are most effective for these groups. This is where Brown University researchers have employed a unique outreach by pairing with Providence's faith-based community.
The US POINTER Study
The study itself, called the U.S. POINTER study, doesn’t involve medication or surgery —
its goal is to see if changes in diet and increasing exercise can offer some protection for high-risk populations such as African Americans.
But the problem is, as discussed previously in the article, increasing the number of minority participants in the research studies. This is also a suitable time to discuss why participation may be so low among this group and part of the reason may be rooted in an infamous research study with African Americans nearly a century ago called the Tuskegee Experiment, a deplorable and unconscionable study involving a deadly sexually transmitted bacteria.
The Tuskegee Experiment
In 1932, the United States Public Health Service (PHS) began a study of syphilis, an extremely contagious venereal disease that at the time had no known treatment. The government recruited six hundred African American men, mostly sharecroppers, in Macon County, Alabama by offering free medical care to participate in this study. The project included following the disease through its full progression by not offering treatment to the participants.
PHS doctors told the participants, 399 of them with latent syphilis (a period when there are no visible signs or symptoms of syphilis, but the disease is still present in the body) and a control group of 201 men who had never had the disease, that they were studying "bad blood". During the study, the men were watched by healthcare workers who only provided them with aspirin and mineral supplements even though penicillin was the recommended treatment for the disease beginning in 1947, some 15 years into the study. PHS doctors then convinced local physicians in Alabama not to treat participants when they went to seek help for the debilitating effects of syphilis and instead steer them back to the Tuskegee Institute where the research was being spearheaded.
"[By the time the study was shut down], twenty-eight had died from syphilis, one hundred lost their lives to syphilis-related complications and at least forty spouses had been diagnosed with the disease, passing it on to nineteen children at birth."
To track the full progression of the disease, researchers offered no effective care even though treatment medications were available. In the end, many of the men died, went blind or insane, or experienced severe health problems due to the untreated disease. In 1972, the story about this experiment became known and resulted in public outrage. Some 40 years after this "morally wrong" study began, it was finally shut down.
Unfortunately, by the time this occurred, twenty-eight had died from syphilis, one hundred lost their lives to syphilis-related complications and at least forty spouses had been diagnosed with the disease, passing it on to nineteen children at birth. As a result of this experiment, many African Americans have developed a deep mistrust of public health officials, research studies, and vaccines.
A Faith-Based Partnership
Based on the actions of public health officials in the Tuskegee experiment, it is indeed understandable why African Americans have lingering doubts about research studies, but why have Brown Researchers reached out to the faith-based community to help get the word out? This answer lies in the activities of the African American community.
In a recent Associated Press story, they reported that African Americans attend church more regularly than Americans overall and pray more often. Most attend churches that are predominantly Black, but more importantly, there lies broad and deep respect for the Black church and its historical role in pursuing racial equality and providing for the underserved communities. Brown researchers are using this knowledge in an attempt to recruit research participants.
Here in Rhode Island, researchers are working with Reverend Howard M. Jenkins, Jr., president of the Ministers Alliance of Rhode Island and pastor at Bethel African Methodist Church located in Providence, to spread the word.
"As faith-based leaders, we recognize that we have a strong and influential voice in our community...we're leveraging our role to encourage widespread participation in this critical trial." ---- Rev. Howard M. Jenkins, Jr.
Reverend Jenkins told the Brown University newsletter, “As faith-based leaders, we recognize that we have a strong and influential voice with our community. Given the importance of Alzheimer's and its devastating impact on people of color, we're leveraging our role to encourage widespread participation in this critical trial.”
The approach that the researchers are using is called the Faith Engagement Outreach Model, which, according to the Brown newsletter, "seeks to expand participation, amplify advocacy, catalyze learning, develop trust and tolerance and facilitate engagement. The approach engages trusted voices in the faith community to forge new alliances and encourage community collaboration with research institutions like Brown and its affiliated partner hospitals."
The Reverend Dr. Lamonte Williams, the faith engagement director for the U.S. POINTER study and community liaison and outreach specialist at the Maya Angelou Center for Health Equity at Wake Forest School of Medicine, told the Brown newsletter, " If you want real change, you must start at the center of the community, and the center of the African American community has long been the African American church. There is a massive gulf between who is affected and who is involved," noting that the reticence of people of color to participate in research studies is rooted in the infamous Tuskegee experiment, which we cited earlier.
The Brown newsletter notes that "Williams is the architect of the Faith Engagement Outreach Model. He explained that research institutions need to demonstrate to faith leaders how and why participation makes sense for community members, and work to earn their buy-in on the recruitment effort. From there, faith leaders can offer information to congregants and other members of their networks, to encourage enrollment."
"If you want real change, you must start at the center of the community, and the center of the African American community has long been the African American church." --- Rev. Dr. Lamonte Williams
“By utilizing the Faith Engagement Outreach Model, we expect the program’s trajectory to trend upward in the next six months from its current 11% people of color enrollment, aiming to our goal of 30%,” Williams said of the Rhode Island arm of the national study.
More About US POINTER
The Brown University newsletter noted that the "U.S. POINTER is a landmark two-year clinical trial designed to evaluate whether lifestyle interventions such as increasing physical activity and eating a healthier diet actually help to prevent Alzheimer’s in people who may be at increased risk of developing memory loss and dementia in the future."
The trial is based on a Finnish study that showed a Mediterranean-type diet, vigorous exercise, heart health monitoring, and cognitive stimulation have a protective effect on cognitive function, explained co-leader Rena Wing, a Brown professor of psychiatry and human behavior and director of the Weight Control and Diabetes Research Center at The Miriam Hospital.
“We need to find out if people in the U.S. are able to make those changes — increase exercise, improve diet — and if so, [will] those changes...really help prevent Alzheimer’s here as it did in Finland,” said Wing. “To do that, though, we need a study population that’s representative of the entire population. And that means we need more people of color.”
According to the Brown University newsletter, "Williams is so supportive of the U.S. POINTER trial [since] interventions being tested are strongly beneficial for all participants: 'There is no medicine, no shots,' he said. 'The prescription is simply to improve eating and increase physical activity. If nothing else, you improve health outcomes just by increasing participation.'”
"It's great to see what the U.S. POINTER study is doing in trying to make brain research more representative," said Attorney RJ Connelly. "Because of what we know about the numbers of people of color who are affected by Alzheimer's disease, it is important that we use novel and innovative ways to get the word out to all communities about the importance of participation in such studies. By building bridges between researchers and participants, like the Faith Engagement Outreach Model is doing, we can reach more racial and ethnic groups and, in the end, provide better health interventions to those who are most in need."