At AAIC, where new research on the interplay between racism, discrimination, and heightened risk of cognitive decline, reporter Phil Gutis encounters not just the data points, but the human story.
The setting could not have been less threatening. I was sitting in the press room on the last day of the Alzheimer’s Association International Conference with my good friend Brittany Cassin and a researcher she wanted me to meet.
The researcher, who will remain anonymous, works to increase minority participation in clinical trials.
I asked what I thought was an innocent question: had she seen the news release from the Association on the impact of racism on cognitive health? I handed her the release, and Brittany and I watched as the researcher froze. Clearly, something was wrong.
After a bit of coaxing, we heard that this researcher, an African American woman, had experienced a painful experience of racism at her hotel a day or so before. She had returned to the hotel from a walk and sat down in the attached restaurant to grab a bite before heading to the conference center. She wasn’t wearing her conference badge or anything that identified her as among the thousands of attendees at the Alzheimer’s conference in San Diego. She ordered her meal and waited a reasonable amount of time for the food to arrive. Soon, she realized other patrons who came in after her were being served. and then sat watching as patrons who came in after her ordered and were served.
After 45 minutes, the researcher told us, she sought the manager to complain. “Don’t worry,” the manager snapped back, “we’ll comp your meal–” implying, she felt, that she somehow was just a Black person who wanted a free meal.
As disturbing as the story was, what the researcher told us next was reflective of the conclusion of the article outlining the impact of racism on cognitive health: After the breakfast incident, she said, she lost an entire day of the conference. She was unable to focus on the panels. She had no interest in networking with old colleagues or meeting anyone new. She was exhausted and wrung out. All she wanted to do was go back to her hotel.
Racism makes already challenging disorders worse
Now, think about the millions of people who experience racism on a daily basis. Most may not be as overt as what the researcher experienced in that hotel restaurant. But a cut is a cut and over the years those cuts clearly add up.
According to the Alzheimer’s Association, Black Americans are about twice as likely — and Hispanic/Latinos are about one and a half times as likely — to develop Alzheimer’s or other dementias.
Why? Well, as with all things Alzheimer’s and other cognitive illnesses, it’s complicated. There are lifestyle factors, differing access to nutritional foods, and exercise challenges. Every day, the list of reasons why people develop cognitive illnesses seems to grow.
But at the recently concluded AAIC conference in San Diego, researchers presented two studies that found structural, interpersonal, and institutional racism are associated with lower memory scores and worse cognition in midlife and old age. The findings were particularly dramatic among Black individuals.
“Chronic exposure to racism and interpersonal discrimination among marginalized communities leads to stress that affects the body and influences physiological health and likely contributes to the development of cognitive decline,” said Jennifer Manly, a professor of neuropsychology at Columbia University and author of the research.
“Overall,” she continued, “our findings indicate that racism impacts brain health and contributes to the unfair burden of Alzheimer’s disease in marginalized groups.”
The Columbia study looked at approximately 1,000 middle-aged adults – 55 percent Latinx, 23 percent Black and 19 percent white – and found that exposure to interpersonal and institutional racism was associated with lower memory scores. And dealing with structural racism was associated with lower memory scores among all racial and ethnic groups included in the study.
Does racism in cognitive disorders impact the super-agers?
Another study presented at the conference, called “Life After 90,” looked at the so-called super-agers.
That study’s 468 participants – 20.5 percent Asian, 21.8 percent Black, 14.5 Latinx, 35.7 White and 7.5 multiracial – had an average age of 93 and participated in three cognitive assessments over a year.
Researcher Kristen George, an assistant professor of epidemiology at the University of California, Davis, noted that “despite the incredible longevity of the group, discrimination has an indelible impact on cognitive health.”
“The oldest old adults still stand to benefit from efforts to eliminate and redress health disparities,” George added.
The Alzheimer’s Association held a media briefing about the research at AAIC. As I noted in my day-one roundup of the conference, the issue of institutional racism and cognitive illness struck me as a horribly intractable problem. After the presentations, I asked the panel how we can even begin to tackle a problem as overwhelmingly large as societal racism on top of the many unknowns about the science of cognitive impairments.
The answers – tackling food deserts and access to early-life schooling — were interesting, but ultimately, incremental and unsatisfying. But I suppose there isn’t another way.
Carl Hill, the Alzheimer’s Association’s chief diversity, equity and inclusion officer, summed up the research by saying: “We must create a society in which the underserved, disproportionately affected, and underrepresented are safe, cared for, and valued.”
Yes, of course. No argument with that. But when even a researcher who spends her days trying to address one massive problem – the underrepresentation of people of color in clinical trials and research studies – can experience painful racism while trying to get a simple breakfast at her hotel, the problem seems insurmountable.
I hope funding for research like this might be a step, however incremental, in the right direction — just like so much with Alzheimer’s and other cognitive diseases.
Phil Gutis is a former New York Times reporter and current Being Patient contributor who was diagnosed with early-onset Alzheimer’s. This article is part of his Phil’s Journal series, chronicling his experience living with Alzheimer’s and his participation in the aducanumab clinical trial.