Posted: Sunday, December 1, 2013 5:00 am
By John Newsom firstname.lastname@example.org
GREENSBORO — If you’re old, you’ve got about a 1-in-9 chance of getting Alzheimer’s disease.
If you’re old and black, your odds pretty much double.
Why? Some scientists think it’s heredity.
But to do research on Alzheimer’s in African Americans, scientists need African Americans to study, and for years, they didn’t have them.
Researchers at N.C. A&T have tried to solve this conundrum for the past decade. They’re making progress.
A&T had a hand in a breakthrough gene study published in April. Early next year — and thanks to a $1 million grant — A&T will open a new center off campus to help Greensboro residents deal with Alzheimer’s.
“We hope one day we can contribute to important (treatments). We hope we can find a cure or a therapeutic drug,” said Goldie Byrd, a biology professor and A&T’s lead Alzheimer’s researcher. “Between now and then, it’s important for people to be more literate about the disease.”
An uphill battle
Alzheimer’s — the most common form of dementia — is getting worse because people are living longer. As doctors are figuring out ways to reduce cancer, strokes and heart disease, the number of people killed by Alzheimer’s in the past decade has grown by almost 70 percent. The Alzheimer’s Association predicts that the ranks of disease sufferers will triple by the middle of the century.
It’s worse for African Americans, who are twice as likely as whites to have Alzheimer’s. High blood pressure and diabetes are two key factors associated with the disease, and blacks have high risk of getting both.
Other studies link Alzheimer’s to low education levels, poor education, having a low income and growing up in rural areas.
“The truth is, we don’t know what causes Alzheimer’s,” Byrd said, “and we don’t know how to cure it.”
In search of samples
Before coming to A&T in 2004, Byrd took a yearlong sabbatical at Duke University, where she worked with human genes.
She was interested in Alzheimer’s research. Byrd, who is black, had family members with Alzheimer’s. So did a lot of other African American friends and co-workers.
Duke seemed to be the perfect place to do gene research. One problem: Out of thousands of genetic samples, Duke had only about 50 from African Americans — not nearly enough for sound scientific research.
That realization led to cooperation between four universities: A&T, Columbia, Vanderbilt and Miami (Fla.).
The African Americans & Alzheimer’s Disease research group would recruit blacks, about 2,000 with Alzheimer’s and another 4,000 without, to take part in future studies.
Byrd, who also is the dean of A&T’s College of Arts and Sciences, said the research group has passed its goals. A&T, she notes proudly, has recruited more people than the other three schools.
Byrd and others from A&T have gone through Greensboro and across the state looking for volunteers wherever they can find them. Churches. Community groups. Barber shops.
A lot of scientists generally assume that blacks won’t take part in scientific research. Lots of African Americans remember an infamous study in Alabama. For 40 years, researchers studied rural black men who were sick. The researchers didn’t tell the men they had syphilis. They also didn’t treat them for it.
For the Alzheimer’s study, Byrd’s group traveled to people’s homes, sometimes several hours from Greensboro, to do tests and draw blood. They said the personal information would remain confidential and participants could drop out at anytime. They promised to keep participants updated on what research was found.
“I know what it would take for me to give consent to take my mother’s blood,” Byrd said. “If she was alive and in her 70s or 80s, I wouldn’t do that unless I thought the people doing this had her best interests at heart and treated her with dignity and respect.”
These recruitment efforts led to a research paper that Byrd and others at A&T published earlier this year.
The conclusion: African Americans are as willing as anyone else to take part in a health research study. You just have to ask.
In the lab
The main point of reaching out to people and taking their blood samples is to give scientists enough material to work with.
Those scientists, using some of the samples collected by A&T, made a breakthrough this spring.
A study published in the Journal of the American Medical Association, one of the nation’s top scientific journals, found a gene variant common among African Americans who have Alzheimer’s. Meaning, blacks with this slightly different form of the gene have double the risk of getting Alzheimer’s than blacks who don’t.
Byrd was a co-author of the report. One of the report’s main authors was Margaret A. Pericak-Vance, a scientist Byrd worked with at Duke on her sabbatical a decade ago.
“Although Alzheimer’s occurs as frequently in African Americans as other populations, there have been significantly fewer studies that include this population,” Pericak-Vance, now director of Miami’s gene research center, said about the study earlier this year. “This research will enable African Americans to take full advantage of the benefits of genomic medicine when research findings are translated into clinical practice.”
A caregiver’s struggle
During their home visits, Byrd’s team sees the stress that caregivers are under.
Gladys G. Rawls takes care of her husband, Lewis, a retired Greensboro city worker with Alzheimer’s.
Rawls said it’s a lot like taking care of a baby. Her husband of 37 years doesn’t like to get dressed. He doesn’t like changes to his routine. He’s cranky if he misses his nap. He easily gets irritated and frustrated.
“He’s not sick. He doesn’t have cancer,” Rawls said. “I have to watch him myself every day. There are so many things he could get into.”
Gladys goes it mostly alone. A nursing assistant comes by their Greensboro home three times a week.
Three days a week, Gladys takes Lewis to adult day care. Lewis gets lunch and a nap. Gladys gets a break. If she’s feeling good, she’ll clean the house or go shopping. If she’s tired, she’ll take a nap.
“I have to keep moving and do the best I can and take care of him,” Rawls said. “God said we wouldn’t always be in good health and prosperity.”
‘We’re here to help’
Another thing Byrd’s team noticed on their home visits: The families of Alzheimer’s sufferers had questions. What do we do? Where do we go for help?
“We felt like they needed us to do things, so we decided to help them be the best caregivers they can be without feeling helpless or lost,” said Takiyah Starks, the study’s clinical research coordinator.
Saturday is the study team’s fifth annual caregivers conference to help those taking care of Alzheimer’s patients.
The A&T team also holds a support group for caregivers that meets on campus the third Monday of each month.
This outreach and education effort will take a big leap forward this spring. The A&T team will use a $1 million grant from Merck, the pharmaceutical company, to open a center on the second floor of a university-owned building on Yanceyville Street.
The Center for Outreach in Alzheimer’s, Aging and Community Health — or COAACH — will be the study team’s new home. There they can schedule more support groups, train nursing assistants to work with Alzheimer’s sufferers and be the place where people — black and white — can get their questions answered about Alzheimer’s.
“We didn’t want to go into their homes and draw blood and be done with it. We wanted to help. We wanted to give back,” Starks said. “We’re here to help everyone.”
Contact John Newsom at 373-7312 and follow @JohnFNewsom on Twitter.
- Want to go?
- What: 2013 Caregiver Education Conference, where professional and family caregivers can get expert advice on caring for loved ones with Alzheimer’s and dementiaWhen: 9 a.m. to 3 p.m. SaturdayWhere: N.C. A&T Alumni-Foundation Event Center, 200 N. Benbow Road, Greensboro
Cost: Free with advance registration. $10 at the door. Lunch and door prizes are included.
Information: Visit www.ncatad.com or call Dora Som-Pimpong at 285-2176.
- About the study
- The African American Alzheimer’s Research Study seeks to identify genetic causes of Alzheimer’s disease in blacks.Researchers at N.C. A&T, University of Miami, Vanderbilt University and Columbia University are looking for African American men and women who are 60 years and older to take part in the study. Participants can have severe memory loss, dementia or Alzheimer’s. Researchers also are seeking men and women without any memory loss.Participants must sign consent forms, give family and medical history, get their memory tested and provide a blood sample. The process generally takes about three hours and is done at the participant’s home.
Participation is voluntary, confidential and free, and it will not affect health care or insurance coverage. Those who take part are paid $50.