When the American Bar Association in Washington, D.C., wanted to know how many people in prison had Alzheimer’s disease or dementia, the answers were hard to find. That information wasn’t collected by the prison system.
So the ABA turned to the University of South Carolina and the South Carolina Alzheimer’s Disease Registry maintained by the Arnold School of Public Health. For more than 35 years, USC’s Alzheimer’s registry has collected information on all diagnosed cases of Alzheimer’s disease or dementia in South Carolina. The first of its kind in the U.S., the registry provides a comprehensive resource for researchers, policymakers and caregivers, allowing them to track demographics and trends.
Researchers cross-referenced the registry information with South Carolina Department of Corrections data to determine the prevalence of Alzheimer’s disease and related dementias within the state’s prison system.
“We found that in the general population, the prevalence is about 6.8 percent. And in the incarcerated population, it’s 14.4 percent,” says Maggi Miller, an Arnold School research assistant professor and co-director of USC’s Office for the Study of Aging. “We also found that individuals who were diagnosed at a younger age were incarcerated significantly earlier in their life compared to other incarcerated individuals with an Alzheimer’s or dementia diagnosis. And this happened even more in African Americans and females.”
While there had been some similar studies completed in Europe, this was the first such study in the U.S. “We have a unique opportunity to use our data to answer these important questions,” Miller says.
South Carolina was the first state in the country and is one of just four nationally with an established population-based registry. Its researchers have advised other states and countries on ways to set up their own registries.
“With the ‘silver tsunami’ upon us, cases are just going to keep rising. This devastating disease is going to continue to be an issue for our state and for the nation and the world.”
Housed in the Office for the Study of Aging, the registry captures demographic information about patients, including their age at the time of diagnosis, their gender and race along with the type of dementia, where they were diagnosed, their zip code and, in some cases, date and cause of death. Because it has been in existence so long, the Alzheimer’s registry has data that is collected about its cases over time with new information added on a yearly basis, making it a useful tool to better understand the disease and trends.
“We do quite a bit of mapping of cases throughout the state,” she says. “And we’ve done some really neat overlays looking at income-levels, disparities in health care access, neighborhood socioeconomic status, location of cancer cases, and where individuals with cerebrovascular disease or stroke are distributed within the state.”
Partnering with the Alzheimer’s Association, the office has created county-level fact sheets that highlight where cases are found and drill down to the zip code-level.
“They’ve been a real help with solidifying policy changes and services for individuals in those areas,” Miller says. “Sometimes people just aren’t aware of where these individuals reside. So that’s been a real big benefit to have this level of data to share with the public and with local legislators.”
Miller says the registry has seen a high prevalence of dementia cases along the I-95 corridor, a location that has long been home to health care disparities.
The registry also provides a rich source of data for other research projects. For example, registry and state law enforcement data helped USC researchers determine if there is a correlation between alcohol use and dementia. The researchers used DUI cases as an indicator for alcohol use disorder.
“Through our analysis, we found that individuals with a history of DUI were diagnosed with Alzheimer’s or dementia at least 10 years prior to those without a history of DUI,” she says. “And for those with multiple DUIs, their diagnosis was even earlier.”
The office has conducted in-depth follow-up interviews with more than 600 caregivers for Alzheimer’s and dementia patients. That information has led to findings about everything from who makes decisions to place a loved one in a nursing facility to health and sleep patterns for Alzheimer’s caregivers.
“We found that caregivers are more sedentary and more overweight compared to the normal population,” Miller says. “They’re the ones that are taking care of this vulnerable population. They need to be healthy to keep their loved ones and their family members healthy.”
The work of the registry is particularly important as demographics shift and the nation ages.
“With the ‘silver tsunami’ upon us, cases are just going to keep rising,” Miller says. “This devastating disease is going to continue to be an issue for our state and for the nation and the world. There is a critical need for surveillance tools like the registry to be used for tracking the disease and performing research into risk factors, interventions and potential treatments.”