Dementia care practice: Integrating medical and caregiver support in a community‐based program

Abstract

AbstractBackgroundDementia is among the most challenging health issues of our time and affects not only the person with dementia (PWD) but their family and other caregivers as well. With no cure or effective disease modifying treatments currently available, having affordable models of care that address caregiver needs as an integral part of medical management of the PWD is widely seen as essential to maximize quality of life, manage safety concerns, plan for future care needs and provide highest quality care. Data is limited regarding cost effectiveness or caregiver and PWD experience of such care models. MemoryCare is a community‐based, out‐patient nonprofit organization serving a largely rural area of western North Carolina for 19 years with a model of care that integrates education, training and support of caregivers with the medical care of persons with Alzheimer’s disease and other types of dementia. Caregivers participate in all clinic visits offering valuable history that informs medical decisions and, with the PWD, contribute to development of care plans. Alongside provision of medical care for the PWD, caregivers receive dementia education, training in behavioral management, resource matching and support specific to their individual needs. In 2019, 1,020 PWD and 3,372 caregivers enrolled at MemoryCare for care services as a supplement to primary care. For the past 5 years, observational data regarding hospitalization rates, 30‐day readmission rates, and ED utilization was collected for PWD seen in MemoryCare’s clinic setting who had been enrolled for at least one year and lived in a defined region where health care utilization could be independently confirmed. Caregiver satisfaction was assessed for the same 5‐year period through anonymous self‐report surveys. Data collected reveal high levels of caregiver satisfaction, increased dementia‐specific knowledge, and perceived improvement in ability to manage dementia‐related behaviors and lengthen time in the home setting. Data shows lower hospitalization and ED visit rates as well as reduced length of stay and readmission rates when compared to published norms. Findings suggest that inclusion of caregivers in the medical model of care for PWD may improve overall outcomes and warrant further study of integration of caregivers into clinical care models.