Grant: Op Gr: BHCIA: KS/Mobiliz. Grants-Caregivers/Care Prov./Aging with Neurodiversity

Most individuals with dementia and their family/friend caregivers want to receive care at home for as long as possible. Health systems also want to minimize costly nursing home care. However, when care needs become more complex, this may be difficult. Adult day programs aim to maintain or improve older adults' health, wellbeing, social, physical and cognitive functioning, and independence. They also provide respite to caregivers and allow them to continue working a paid job. However, studies on the effects of day programs are inconclusive. Some suggest positive effects on individuals with dementia (i.e., fewer nursing home admissions, less acute/primary care use, slower physical/cognitive decline, better mental health), and better health and wellbeing of their caregivers. Other studies suggest no or even negative effects. Therefore, guided by a realist lens and partnering with experts (individuals with dementia, their caregivers and advocates, day program staff and managers, and healthcare policy makers), we will review the literature on adult day programs and develop program theories that explain how and why these settings lead to positive, negative, or no effects on individuals with dementia and their caregivers. We identified 14 traditional literature reviews (including 329 references published between 1975 and 2021), that have focused on adult day programs. These reviews and studies plus additional searches and expert input will be the basis for our review. From the included references, we will extract narratives that explain how and why day programs do or do not bring about certain outcomes for whom and under what circumstances. These narratives will be synthesized, transformed into hypotheses, and linked and visualized to form program theories. These theories will be tested and further refined in future studies. They will be essential in guiding future research and improvement of day programs.