Health Outcome Measures Core

Alzheimer's disease and related dementias (ADRD) affect more than 6 million Americans and account for more than 100,000 deaths each year. The 2024 Lancet Commission on ADRD identified 14 factors associated with a higher risk for cognitive decline in later life that include: quality of education, depression, smoking, excessive alcohol, hearing impairment, uncorrected visual impairment, conditions such as traumatic brain injury, diabetes, obesity, hypertension and high cholesterol, physical inactivity, social isolation, and air pollution. The public health /clinical impact of mitigating the 14 ADRD risk factors is estimated to be a 50% reduction in all dementias. "Unpaid caregiving" is defined as care to individuals managing chronic health problems or disability provided by a workforce of caregivers who are family and friends. Previous work has demonstrated that more than 20% of the US is currently providing unpaid care to a family member or friend. Furthermore, another 15% of the US anticipate needing to provide unpaid care to a friend or family member within the next two years. Preliminary surveillance among these caregivers shows significantly poorer health outcomes as it relates to the 14 risk factors for ADRC. Thus, the very individuals who provide a vital source of care for friends and family will themselves be in need of care in the future.

The primary focus of this research is to define and establish the infrastructure for a South Carolina statewide Caregiver Health and Wellbeing Registry. Consequently, the aims of the proposed Health Outcomes Core of the South Carolina ADRC are to: (1) establish the feasibility of a statewide South Carolina Caregiver Health and Wellbeing Registry aimed at ADRD prevention; (2) define and establish the foundational infrastructure components (physical, technical, human resource needs) of a caregiver health and wellbeing registry aimed at ADRD prevention; and (3) engage with other SC-ADRC cores to support the overall aims of the center. The potential public health impact of ADRD prevention within the US and uniquely within South Carolina is unprecedented in terms of mitigating the burden of ADRD on the health care system, places of work, families and importantly on family / friend caregivers who provide unpaid care to others.