Study to Understand Participant Perspectives On Respite upTake (SUPPORT)

ABSTRACT Over 6.9 million people are living with Alzheimer's Disease (AD) and Alzheimer's Disease Related Dementias (ADRD) in the U.S., many of whom rely on family caregivers for activities of daily living. Caregiving to adults with dementia often requires substantial time commitment and personal attention; over time this can negatively impact caregiver physical and mental health and wellbeing. Adult Day Services (ADS) offer community or center-based care for adults with special needs, providing much-needed, temporary relief to family caregivers. ADS is one of the most affordable care options for adults with dementia, is covered by Medicaid, and is widely available. ADS offers health benefits for both caregivers and adults with dementia. For caregivers, ADS use is linked to reduced stress and depression and increased engagement in self-care activities. Among adults with dementia, particularly those with moderate dementia, ADS benefits include increased social interaction and cognitive health, reduced sleep disturbances, and delayed entry into nursing homes. Despite considerable need and benefits, estimates indicate only a quarter of U.S. caregivers to adults with dementia utilize ADS. Root causes of low ADS use among caregivers have been largely unexplored. Only a handful of studies have examined determinants of ADS use, with most using national survey data to report disparities in respite care utilization by race, ethnicity, and income. Little is known, however, about modifiable determinants of ADS use among caregivers to adults with dementia or perceived barriers and facilitators to ADS utilization from the perspectives of caregivers, ADS staff, and clinicians. This information is critical to the development of future interventions to promote ADS awareness, decision-making, and use among caregivers to adults with dementia. We will address these evidence gaps through our Study to Understand Participant Perspectives On Respite upTake (SUPPORT). This mixed methods inquiry will leverage two of our team’s ongoing cognitive aging cohort studies, comprised of 2,000+ patients and involved caregivers in Chicago, IL. For Aim 1, we will augment the rich data collected as part of these longitudinal studies by asking participants about ADS awareness and use to: 1) Determine the prevalence of ADS awareness and use among caregivers to adults with moderate dementia and investigate group differences by health literacy and other psychosocial factors. For Aim 2, we will conduct qualitative interviews with multiple parties to: 2) Examine barriers and facilitators of ADS use from the perspective of caregivers to adults with moderate dementia, ADS staff, and involved primary care clinicians. This two-year study is responsive to PAR-23-179 as a small research grant (R03) for the next generation of AD/ADRD researchers; it also addresses NIA priority areas by identifying key factors driving unpaid caregiver burden.