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Demystifying Dementia
Outreach manager Crystal Evans educates African Americans about memory loss.

blank Drew Diskin
  Crystal Evans (left) with program ambassador Ernestine Jones Jolivet.

Crystal Dawn Evans first noticed racial differences in health care when she was helping her late disabled father. After a massive stroke left John Evans unable to think or speak clearly, he relied on his teenage daughter to communicate his medical needs. However, the medical system showed little interest in the elderly Park Heights man or his young advocate, says Evans, now a community relations manager at Johns Hopkins Bayview Medical Center.

She remembers how stunned she felt when a doctor told her father, matter-of-factly, that he had dementia.

“My father just nodded his head,” Evans says. “He had no idea what he was hearing, but he pretended he did because he was a proud man. I said to the doctor, He doesn’t understand what that is.’’

Neither did Crystal. But the doctor, who was white, dismissed her questions. Months later, she learned that her father had vascular dementia, a condition caused by blockages in the brain’s blood supply that causes problems with memory, thinking and reasoning. No one told her about treatment programs or support groups that might help. Instead, the high school student left the examining room feeling angry, humiliated and overwhelmed by this mysterious new twist in her father’s illness.

A “never again” zeal inspires Evans, now 33, to educate Baltimore’s African-American community about Alzheimer’s disease and other forms of memory loss. As manager of the outreach program for the Johns Hopkins Memory & Alzheimer’s Treatment Center, she’s determined to make sure that patients and their families find the care and support they need—at the earliest possible stage.

The most common form of dementia, Alzheimer’s is a disease that results in the loss of brain cells. It is more prevalent among African Americans than non-Hispanic whites, partly because of the black population’s higher rates of diabetes and high blood pressure, studies suggest. Although no cure exists, certain treatments and medications can help ease symptoms.

Before she can inform people about the disease, however, Evans must first bridge the historic gulf of black distrust toward medical institutions and research.  Many African Americans remember the infamous Tuskegee syphilis trials in which U.S. Public Health researchers set out to learn how the disease would progress if left untreated. Doctors recruited poor male sharecroppers they thought had syphilis by telling them they had “bad blood” and could receive “free” medical care for participating in the study. The men were never told their diagnosis or given drugs that could have helped or cured their condition. The deceptive study lasted 40 years until The Washington Star broke the story in 1972.

 “A lot of times when people hear I’m with Johns Hopkins, they say, Are you going to use me as a guinea pig? Instead,” Evans says, “I focus on education, knowledge and access to care.”

Armed with a master’s degree in psychology from Loyola College and her first-hand knowledge of racial disparities in health care, Evans has created partnerships between Hopkins, the Alzheimer’s Association and African-American churches and community groups in northwest Baltimore, not far from where she grew up. She has increased awareness that serious memory loss and confusion are not normal to aging, advised Hopkins physicians on appropriate ways to talk with black patients and encouraged more African Americans to volunteer for a longitudinal study at Hopkins.

“Although Alzheimer’s affects African Americans disproportionately, there’s still a huge stigma attached to it,” she says. “I tell people that to find a treatment that’s effective for everyone, it’s important to be involved in the research.”

The long-range Alzheimer’s study requires participants—age 60 and over—to perform annual mental skills tests and give a blood sample that may show risk factors for the disease. When Evans arrived, only a handful of African Americans had enrolled in the observational study; now a quarter of the nearly 300 participants are black.

One of them, Ernestine Jones Jolivet, also serves as a “program ambassador” for the Memory & Alzheimer’s Treatment Center. Both of her parents died of dementia, and she speaks widely about the pain of dealing with the Alzheimer’s that eventually claimed her mother’s life.

“At first I was embarrassed by her behavior because I did not know what was going on,” Jolivet says. “The more I’ve learned, the more passionate I am to share what I know with others whose loved ones are going through this.”

Now she and her siblings, including state senator Verna Jones, honor their late parents with an annual community forum on memory loss for African Americans. Evans serves on the event’s planning committee:  It’s one more way to spread the word about the disease and what Hopkins can offer.

For information about the ongoing Alzheimer’s study, call 410-550-9021.

—Linell Smith



Johns Hopkins Medicine

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