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Detroit Free Press
In mid-August, Dr. Christa-Marie Singleton said a final good-bye 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," said Singleton of Atlanta.
Singleton and Karen Jackson, whose mother, Lois Williams, was diagnosed with dementia, recently discussed the debilitating disease.
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.
More than 21% 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% 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, 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.
The vast majority of African-American Alzheimer's research is by surveillance, which includes brain imaging, surveys and taking samples of blood and cerebral spinal fluids to search for precursors of the disease.
Parker said people age 60 and older with and without memory problems are needed to participate in longitudinal research studies.
Singleton's family has a long history of Alzheimer's disease.
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, noncompliant diabetic, heart arrhythmia." Those same ailments put Jackson's mother at risk.
Jackson, a retired Internal 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.
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 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. I started to think, 'Are we next?' and 'What can we do to prevent this?' " Singleton said.