African Americans are twice as likely to develop Alzheimer’s disease than white Americans. The reasons why are unknown because the group is underrepresented in research.
An Indiana University researcher is looking to change that by studying Alzheimer’s disease in underrepresented groups with LEAD — Longitudinal Early-Onset Disease Study.
Dr. Liana Apostolova of the IU School of Medicine has been studying early onset Alzheimer’s — meaning symptoms of cognitive decline appear before the age of 65 — for two years as part of a five-year research grant. While research into this rare form of the disease is already limited, African American, Latino and Asian American representation in research does not reflect the general population of the United States.
“We need to increase minority populations in research and begin looking into ways to raise awareness in the community so they can come and find us,” Apostolova said. “This is not a form of the disease where we can set up a health clinic, because it’s a rare variant. We need to raise awareness.”
Because of the lack of representation in research samples and a general lack of understanding of early onset Alzheimer’s, which Apostolova said progresses rapidly and more aggressively than late onset Alzheimer’s, it’s unclear why African Americans are more likely to develop the disease.
However, doctors do know health issues such as diabetes and vascular disease can increase one’s risk of developing Alzheimer’s. According to the United States Department of Health and Human Services, African Americans are 60% more likely than white Americans to have diabetes, and 40% more likely to have high blood pressure, a key risk factor for vascular diseases.
Apostolova hopes to increase the number of minority patients that she studies to determine the risk factors for early onset Alzheimer’s, as well as why certain demographics are more likely to develop the disease.
Laura Forbes, communications director for the Indiana chapter of the Alzheimer’s Association, said the chapter has volunteers focusing on education and awareness in the Black community.
“We’re working to spread awareness of the [medical] trials that are going on,” Forbes said, “and dealing with some of the mistrust toward doctors that exists within the African American community.”
Through her study, which is funded through the National Institute of Health, Apostolova and her team work with 600 cognitively impaired patients and 100 cognitively normal patients between the ages of 40 to 64 to study genetic imaging, fluid biomarkers and collecting data on decline of cognitive abilities. Patients are studied for three years to monitor the progression and speed of decline.
While it is normal in middle-age to sometimes forget names of people or forget the reason for walking into a room, cognitive decline hinders one’s ability to live independently, Apostolova said. With Alzheimer’s — either early or late onset — patients can struggle with driving, paying bills, taking medication or keeping up with basic hygiene. Repeating the same information or asking the same questions multiple times are also red flags that someone’s memory loss is related to a health issue, not just a normal part of aging.
“We’re trying to raise awareness of early onset cases,” Apostolova said, “because we hope if people listen or read about this research, they might recognize symptoms in someone in their family and bring them in.”
After a diagnosis of Alzheimer’s, which is determined by memory loss, cognitive decline, and brain scans, patients have an average life expectancy of eight to 12 years, starting from the first signs of cognitive decline.
While Apostolova said it’s difficult to determine how close researchers are to a cure for the disease, she hopes this research will help determine the root causes of Alzheimer’s and pave the way for therapies to increase the quality of life for those currently living with the disease.
“Trials are the next stage of this project,” she said. “Early detection can help create a trial-ready population to test out promising new therapies. Many times with early onset patients, they are otherwise healthy, they’re less likely to have diabetes and heart disease than older patients, so we can study the disease in a purer form, without the noise from other disorders.”
Contact staff writer Breanna Cooper at 317-762-7848. Follow her on Twitter @BreannaNCooper.