By Mylika Scatliffe,
AFRO Women’s Health Writer,
mscatliffe@afro.com
Prior to Steven Owens taking his retirement in 2018 he was an engineer. The 59-year-old who once built satellites for launch into outer space also played the guitar and saxophone.
That was before his diagnosis.
On Valentine’s Day 2017, Owens was told that he had early onset Alzheimer’s disease.
On Valentine’s Day five years before, his mother passed away from the same disease.
Dementia is one of the most common ailments associated with aging.
Now, studies are showing a link between experiences of racism and poor memory, cognitive decline.
Alzheimer’s disease is what most often comes to mind when anyone hears the term dementia.
As defined by the National Institute on Aging, dementia is the loss of cognitive thinking, remembering, and reasoning to such an extent that it interferes with a person’s daily life and activities. While the two terms often are used interchangeably, Alzheimer’s is just one type of dementia.
According to studies reported at the 2022 Alzheimer’s Association International Conference in San Diego last month, experiences of structural, interpersonal, and institutional racism are associated with poor memory and increased cognitive decline in middle and old age, especially amongst African-American people.
The study focused on pathways that can lead to decreased memory and cognitive function decline.
“Trauma– including racism– leads to biological responses in the body,” said Master of Public Health, Carl Hill, chief diversity, equity, and inclusion officer at the Alzheimer’s Association.
“Inflammation in the body is well documented as leading to many serious medical conditions. For some people, dealing with the stress of racism and discrimination includes less heathy lifestyle choices and coping mechanisms. These coping mechanisms might include alcohol and other illegal substances, and overindulging in unhealthy foods.”
Owens’ wife, Shelette Grant-Owens, said the first signs that her husband was dealing with dementia were subtle.
“At first I just thought he was being a typical guy, not paying attention to me when he would ask me to repeat something I’d just told him minutes before,” she said.
Over time she began to notice he was having to do things like use the GPS to get to the grocery store or forgetting a route home that he’d been driving for years.
Unbeknownst to her, Owens suspected he had a problem and went to see a neurologist on his own.
Since then, the couple has learned that Alzheimer’s is considered early onset when diagnosed before age 65, and that early onset Alzheimer’s is more aggressive.
The prognosis is 10 years, while someone with regular onset Alzheimer’s can survive for 20 years or more. Owens’ mother was diagnosed with early onset Alzheimer’s in her 50s and lived until well into her 80s.
Within a year of his diagnosis, his ability to perform his work was affected. He had to retire.
“He doesn’t know I’m his wife,” said Grant-Owens, detailing how Owens often asks why his wife is in their house and when she will go home.
Structural racism and discrimination contribute to a myriad of systemic inequities including lower socioeconomic status, lower quality early life education, and less access to healthy food and quality health care. All these factors impact brain health throughout the lives of Black, Latino, and other minority communities and are things the Alzheimer’s Association seeks to find ways to improve.
Shortly before his diagnosis, Owens was passed over for a promotion at work for which he spent months preparing, while watching White colleagues– some of whom he’d trained– get promoted.
Unfortunately, that wasn’t his first experience with structural racism. In the 1970s, he had to fight to get his desired area of training when he enlisted in the military.
“Steven knew what he wanted to do in the Army – study engineering. But the recruiter kept trying to force him into infantry training, over and over again, basically telling him that as a young Black man, engineering wasn’t for him,” said Grant-Owens.
“Research tells us what is good for the heart is good for the brain,” said Hill. “Cardiovascular health is important for understanding the development of dementia.”
Diabetes, hypertension, high cholesterol over one’s course of life can have negative effects on the brain. Vascular dementia is characterized by the poor quality of the blood flow to the brain. Uncontrolled diabetes, cholesterol, and hypertension can be contributing factors to vascular dementia.
Alzheimer’s disease is the most common form of dementia. Other types include vascular, frontotemporal, and Lewy-Body, and mixed dementias.
Mixed dementia, as the name suggests, is a condition in which brain changes of more than one cause of dementia occur at the same time. It is a prevalent form of the disease with the afflicted often having a combination of Alzheimer’s and vascular dementia.
While more research is needed, there are indications that lifestyle choices and lack of access to healthier options for food and exercise can be a determining factor in developing these conditions.
The Alzheimer’s Association has over 70 chapters across the United States.
“We work for all people in all communities. However, from a diversity, equity, and inclusion perspective and thinking about the disparities that exist, we are trying to understand the unique experiences of those more likely to suffer from Alzheimer’s disease and other forms of dementia,” said Hill. “We must create a society in which the underserved, disproportionately affected and underrepresented are safe, cared for, and valued.”
According to the Alzheimer’s Association report, 2022 Alzheimer’s Disease Facts and Figures, African Americans are roughly twice as likely, and Latinos are one and a half times as likely as Whites to have Alzheimer’s disease or other dementias.
“The Alzheimer’s Association seeks to educate and inform by maintaining a presence and engaging disproportionately affected communities. One way we achieve this is by partnering with organizations that have a presence in some of these communities,” said Hill. “We partner with the African Methodist Episcopal church, recognizing that information is better received coming from a trusted source and where people can see a reflection of themselves.”
Hill added that “less than 10 percent of people in clinical trials for Alzheimer’s disease and other dementias are Black, Asian-American, Latino, or Native American. “
“Clinical trials and research conduct tests to see if drugs and intervention are safe and effective. By not including disproportionately affected populations in the trials, we don’t have assurance that they are safe and effective,” he said. “The Association also partners with historically Black colleges and universities by providing internship programs. Interns can help the association to embed within these communities, where once again people can gain information and learn from someone that looks like them.”
Hill told the AFRO that the Alzheimer’s Association is currently advocating for and drafting the Equity in Neuroscience and Alzheimer’s Clinical Trials Act (ENACT Act). The purpose of the act is to seek authorization of money and resources for researchers funded by the National Institutes of Health to do more with education and outreach to underserved and underrepresented communities.
The ENACT Act also seeks to engage and hire clinical trial staff representative of these communities because as stated earlier, people want to see people who look like them conducting clinical trials.
The initiative also seeks funding for researchers to test various ways of clinical trial recruitment, because the barriers to recruitment in Atlanta may look different than barriers in Prince George’s County, Md.
“In Atlanta, potential participants may have the Tuskegee syphilis experiments in the back of their minds, while in Prince George’s County in Maryland they might not have transportation to the facility where a clinical trial takes place,” said Hill. “The investment in prevention and risk reduction should be at least equal to what we invest in drugs and therapies.”
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