Lisa Barnes

In the whitewashed world of Alzheimer’s research, one scientist is on a quest to understand the diversity of brains

By Usha Lee McFarling, STAT

When she entered the field of Alzheimer’s research a quarter century ago, Lisa Barnes was deeply disappointed to find few Black people like her family members with dementia were being studied. A rarity herself — as a Black female cognitive neuropsychologist — she’s spent her career quietly pushing back.

Since 2004, Barnes has been running the Minority Aging Research Study, one of the nation’s largest studies of Alzheimer’s focused exclusively on Black people and has created a brain bank used by other researchers to understand the illness in this population. This was no easy feat, given that many of the people she hoped to study grew up amid Jim Crow laws and often held a deep mistrust of medical science and its experiments.

“We were learning a lot about Alzheimer’s and cognitive decline but those studies didn’t have people of color, African Americans in particular,” said Barnes. “I wanted to interrogate some of the lived experiences of older African Americans based on what I knew about my own family,” she said in a recent interview at her office at Rush University.

It’s critical work with the population of older Black Americans expected to double in coming decades. Some studies suggest Black Americans are more likely to develop Alzheimer’s disease or other dementias, yet are far less likely to be diagnosed with the disease, and they are still barely represented in many clinical trials for new dementia drugs. There are hints that in Black populations, the disease may progress differently, have different causes and biomarkers, and may not always be so closely tied to the amyloid pathology that’s the focus of many new treatments.

But because there’s been scant research in Black populations, and barely any brains from Black people without dementia to study, understanding these critical differences — and potential treatments they may lead to — remains a distant goal. Barnes isn’t convinced that a widely cited statistic, that Black Americans are twice as likely to get the disease, is true, because there’s a dearth of data from brains of Black people and Black older adults tend to perform more poorly on the standard cognitive testing used to assess people for the disease due to a host of educational and cultural differences. Read more …