A push to get more African-Americans involved in Alzheimer’s research

For more information about the Registry for Remembrance and the African American Caregivers study, call 404-727-8481.

Caregiver Opportunities for Optimizing Lifestyles study

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Source: Several Alzheimer’s specialists interviewed by the Atlanta Journal-Constitution

In mid-August, Dr. Christa-Marie Singleton said a final goodbye to her father, a retired high school physics and chemistry teacher who in her estimation was a scientific genius.

Fred H. Singleton Jr. died at age 81 of Alzheimer’s disease, a form of dementia that strikes African-Americans twice as often as it does whites and often leaves their caregivers emotionally and financially drained.

For those reasons alone, Singleton said her family made the decision to donate her father’s brain to the Registry for Remembrance, an initiative started in 2009 by the Emory Alzheimer’s Disease Research Center aimed at raising awareness and participation in neurological research among African-Americans.

“My dad used to say, ‘You can’t teach what you don’t know, you can’t go where you haven’t been,’ and so by us donating his brain to research, hopefully the Emory team can ‘go where his brain has been’ to find ways to better prevent this devastating disease,” Singleton said.

So, in the midst of making funeral arrangements, the Atlanta resident and Karen Jackson, a Decaturite whose mother Lois Williams was recently diagnosed with dementia, discussed the debilitating disease and the toll it takes on caregivers.

More than anything, they said, they want other African-Americans to know how important it is that they become involved in the registry and an ongoing study of black caregivers called COOL-AD, or Caregiver Opportunities for Optimizing Lifestyles-Alzheimer’s Disease, efforts neither woman was aware of until the disease hit their loved ones.

“The only good thing about Alzheimer’s is that it is often a long process, so I got to spend a lot more time with him to say goodbye,” Singleton said of her father. “But it was also challenging because patients aren’t just having memory lapses. There are stages when they are with you one minute, absent the next, happy one moment and very angry the next. It’s a roller-coaster ride and you don’t know where to go for help.”

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21.3 percent of African-Americans age 71 and older have Alzheimer's or other forms of dementia, according to the Alzheimer's Association. That compares to 11.2 percent of whites in the same age bracket.

The reason is that African-Americans have a higher rate of vascular diseases, said Dr. Monica Parker, an Emory geriatric primary care physician and researcher.

“That means if you have been treated for hypertension, diabetes or high cholesterol, you’re at greater risk for stroke, which leads to memory dysfunction,” Parker said.

Although the disease affects African-Americans the same as whites and other ethnic groups, Parker said how it manifests in blacks isn’t as clear cut, which makes the disease more difficult to diagnose and treat.

“There are differences. We just don’t know what they are, because they haven’t been studied,” Parker said.

That’s why the need for African-Americans to participate in studies in significant numbers is so great, she said.

Parker believes blacks’ fear of research harks back to the Tuskegee syphilis experiment, a four-decade clinical study begun in 1932 in which African-American men were used as “laboratory animals.”

The vast majority of African-American Alzheimer’s research, however, is by surveillance, which includes brain imaging, surveys and taking samples of blood and cerebral spinal fluids to search for precursors of the disease, she said.

Parker said people age 60 and over with and without memory problems are needed to participate in longitudinal research studies. Study organizers reach out to the African-American community through forums at the Carter Center and black churches.

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Singleton’s family has a long history of Alzheimer’s disease that stretches back to her paternal grandfather and an aunt.

Fred H. Singleton Jr., who died Aug. 14, started to experience memory lapses in 2000, when he was taking longer to tell stories, a favorite pastime.

“He fell into the vascular camp,” his daughter said. “I call it the triple threat — hypertension, non-compliant diabetic, heart arrhythmia.”

Those same ailments put Jackson’s mother at risk for the disease.

Jackson, a retired Interval Revenue Service employee, said she knew something was amiss in 2005, when her mother suddenly experienced a drop in her blood sugar level and didn’t recognize a family member.

In 2009, she said, doctors at Emory’s Wesley Woods Center diagnosed Lois Williams with short-term memory loss. The diagnosis changed recently to mild cognitive impairment. Williams becomes easily agitated and forgets how to do things that used to be second nature to her, such as activating her home’s alarm system.

Singleton said it wasn’t until 2010, after being told repeatedly by doctors that her father’s memory losses were likely due to “old age” or “a few mini-strokes,” that she finally brought him to Emory and doctors diagnosed him with Alzheimer’s.

“I felt a little bit of a relief, but it was also anxiety provoking because I have a sibling and a 6-year-old, so I started to think, ‘Are we next?’ and ‘What can we do to prevent this?’” Singleton said.

With more research, she said, she hopes a diagnosis will be more forthcoming for the loved ones of others, and the challenges caregivers face will become not quite so overwhelming.