Lack of donors hampers dementia research

Bad experiences with doctors and studies slows understanding of Alzheimer’s affect on African-Americans

BY ANNA GORMAN
KAISER HEALTH NEWS/TNS

OAKLAND, Calif. – The question came as a shock to Dorothy Reeves: Would she be willing to donate her husband’s brain for research?

Dorothy and Levi Reeves stand in their Oakland, Calif., home, holding their wedding photo from 57 years ago. Dorothy Reeves agreed to donate both of their brains after death to the University of California-Davis for research.
(ANNA GORMAN/KAISER HEALTH NEWS/TNS)

She knew dementia would steadily take Levi Reeves’ memories of their 57-year marriage, his remaining lucidity and, eventually, his life. But to let scientists take his brain after he died? That seemed too much to ask.

“I didn’t want to deal with the idea of his death,” said Reeves, 79. “I certainly didn’t want to deal with brain donation.”

History of distrust
As an African-American and a former schoolteacher, Reeves is keenly aware of the history of racism in health care, including callous and sometimes deadly experimentation.

Reeves said she never personally has had a bad experience with doctors or the medical system. But she’s old enough to remember the infamous Tuskegee Institute syphilis study, during which hundreds of mostly illiterate Black sharecroppers were assured they were being treated for “bad blood” even as doctors withheld effective treatment over decades.

Top researchers say such wariness, while understandable, is thwarting efforts to understand and treat Alzheimer’s disease and other forms of dementia in Black patients today.

Vexing challenge
African-Americans suffer from these cognitive impairments at two to three times the rate of non-Hispanic Whites, yet they are less likely to take part in research.

That has created a vexing challenge for scientists, who are trying to persuade more Blacks to participate in studies — both while they are alive and after they die. A critical part of their efforts is asking for brain donations.

“There is a lot of terrible history that we have to acknowledge and move past,” said Lisa L. Barnes, a neuropsychologist at the Rush Alzheimer’s Disease Center in Chicago. “A lot of minority communities still feel that research involves being a guinea pig. Nobody wants to be used. Nobody wants to be a guinea pig.”

No control
Shirley Fitch, who lives south of Chicago, said no thank you to Rush researchers on behalf of her husband, Clarence. The former university professor died last summer at age 86, seven years after being diagnosed with dementia.

“I’m hesitant because of distrust,” said Fitch. “Once my brain is donated for one purpose, who is to say it won’t be used for another purpose? It is out of your control.”

Although Shirley Fitch is participating in non-Alzheimer’s research at Rush, she said the historical abuses of Black people have been “awful and hard to get over.”

‘Knowledge gap’
Even today, Blacks tend to get worse treatment from hospitals, she said. “It all gets stirred in the pot as to feelings about bias.”

The precise explanations for the disparities among Blacks and Whites are unknown. Until recently, most of our understanding of the pathology of dementia was largely based on studies of White patients.

“We have a real knowledge gap in accurately knowing if dementia is different in minorities as compared to Whites,” said John Olichney, a neurologist and clinical director of the Alzheimer’s Disease Center at the University of California, Davis.

Crucial studies
Scientists say Blacks’ disproportionate rates of dementia may be related in part to the prevalence of disorders that raise the risk of vascular disease: diabetes and hypertension, for instance.
Socioeconomic factors such as higher rates of poverty and lower levels of education also seem to play a significant role, according to research led by the University of California-San Francisco.

Despite advances in imaging technology that allows researchers to peer into the brains of live patients, studying the organ after death is crucial to a deeper understanding of the causes and progression of disease and to developing drug treatments, Olichney said.

Cultural challenge
The challenge is getting enough brains from different populations to study. It’s not just a matter of assuring potential donors that Tuskegee and other ethical debacles are in the past.

To gain trust, Alzheimer’s research facilities such as UC Davis and Rush University are also trying to diversify their staffs, collaborate with community leaders and study religious and cultural beliefs on brain donation.

For example, some African-Americans don’t want their brain separated from their body when they are buried, said Stephanie Monroe, director of African Americans Against Alzheimer’s, which is engaged in various efforts to educate people about the disease and its effects.

“Many people believe in ashes to ashes and dust to dust,” she said.

Reaching out
Alzheimer’s researchers at UC Davis recognized about 15 years ago that they needed a more representative slice of the population, especially in diverse Northern California.

At the time, centers around the country were mostly studying well-educated, White people who volunteered, Olichney said.

So they started reaching out to both the African-American and Latino communities. “That was a real change in our mindset,” he said.

More donors
Today, nearly 400 patients, including about 70 African-Americans, are enrolled in its longitudinal study of the progression of dementia, and they come in yearly for memory evaluations and other tests.

Of the study participants, about 270 have agreed to donate their brains after death, more than 40 of them African-American.

At the Rush Alzheimer’s Disease Center, doctors started following a cohort of African-Americans in 2004 and, some seven years later, began to seek brain donation for the study. Close to 500 African-Americans have signed up to donate after death, and 72 brains already have been donated, Barnes said.

Though she is pleased with the high rate of commitment, she noted that more works needs to be done. In another study, about 3,100 White participants agreed to brain donation, with 1,400 already donated.

‘Lot of effort’
Recruiting African-Americans “takes a lot of effort and a lot of work,” she said. “Every year, we bring it up again and revisit it with those who are reluctant. But if someone is really firm, we don’t push the subject.”

Research on the donated brains has led to intriguing findings. One Rush study, published in 2015, found that Blacks with Alzheimer’s disease were more likely than Whites to have other disorders, such as Lewy body dementia.

Twice as many Blacks with Alzheimer’s as Whites with the disease also had Lewy body dementia, in which protein deposits build up in nerve cells, according to the study. Blacks with dementia also had more severe disease of the arteries, the study found.

Signed up
The number of Blacks studied was relatively small — 41 compared with 81 Whites — yet its findings were potentially important. That’s because the presence of other diseases in the brain means Blacks may not respond as white patients do to drugs aimed specifically at Alzheimer’s.

Dorothy Reeves declined brain donation initially but agreed to sign up herself and Levi, 81, for observational studies. Then she saw what the disease could do.

Her husband, who has Lewy body dementia, went under a table one day to get a magazine and couldn’t find his way out. He forgot her name and those of his children.

She thought about all the other people like Levi.

“It affects people in ways you can’t imagine — regardless of your race,” she said. “It’s almost unbearable.”

Soon the researchers had their answer. Yes, she would agree to donation — for both of them.

LEAVE A REPLY

Please enter your comment!
Please enter your name here