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CHICAGO — 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...