In 1988, public health faculty at the University of South Carolina came together with state agency representatives and community partners to establish a Dementia Study Center to serve as a research hub in support of the nation’s first statewide Registry for Dementing Illnesses. That pioneering work paved the way for what is today the University of South Carolina Arnold School of Public Health’s Office for the Study of Aging, which serves as the home for what is now known as the South Carolina Alzheimer’s Disease Registry.
To this day, 30 years later, the South Carolina Alzheimer’s Disease Registry remains one of only three population-based registries in the country (West Virginia and Georgia have registries), and it’s the most comprehensive of its kind. The purpose of the Registry is to collect information on Alzheimer’s and related dementias (ADRD), provide disease prevalence estimates (including differences among demographic groups) to enable better planning for social and medical services, identify resources for caregivers and family members, and foster research into relevant risk factors.
“One of the qualities that makes our Registry unique is its legislation,” says research assistant professor and Registry manager Dr. Maggi Miller. In 1990, just two years after its inception, the registry was formally authorized in state law. The legislation grants permission to identify cases of ADRD from existing sources and allows cases and caregivers to be contacted to gather additional information.”
South Carolinians need programs and services that support both individuals with ADRD and their caregivers. Community efforts to support those living with ADRD, their caregivers, and the aging population require a strong evidence base. Legislators and community organizations can use Registry data to stay up-to-date on the latest ADRD statistics in order to best serve the community. Registry data is also being used to answer a variety of research questions and is available for public use upon request. Researchers can have access to this unique resource to increase understanding about ADRD.
The Office for the Study of Aging, in close collaboration with the Department of Health and Human Services and the Revenue and Fiscal Affairs Office, uses the rich, diverse collection of data housed in the Registry to produce an annual report (see 2018 Annual Report). This report offers a wide range of research, evaluations, programs and training opportunities that address the needs of older South Carolinians and their families.
These resources are needed now more than ever as South Carolina and the nation experience unprecedented increases in ADRD diagnoses in parallel with the growth of the older adult (65+) segment of the population. According to the Alzheimer’s Association, for example, deaths from Alzheimer’s disease increased by 123 percent nationwide and 181 percent statewide between 2000 and 2015.