Dementia patient and caregiver relevant outcomes currently being reported by adult day service centers in the United States

Abstract

Background: Approximately one third of adults in adult day services (ADS) centers have Alzheimer's disease (AD) and AD-related dementias (ADRD). Understanding of the impact and effectiveness of ADS on persons living with dementia (PLWD) is limited by a lack of patient and caregiver relevant outcomes (PCRO) data. We identified PCROs collected at ADS sites in states that mandate serial data collection and examined the degree to which these data align with established Dementia Care Practice Recommendations (DCPR) and PCROs used in other areas of long-term care. Methods: We conducted an item analysis of regulatory forms used by ADS. Consistent with the methodology used by the Imbedded Pragmatic AD/ADRD Clinical Trials (IMPACT) Collaboratory for PCROs collected in other long-term care settings, we created a matrix informed by DCPR. We matched each item in regulatory forms reflecting a PCRO to one of the seven DCPR domains as well as to the 53 PCROs from other long-term care sectors. Results: Ten states routinely collect outcome data in ADS. Among these, 80% assess cognitive function. All 10 states capture PLWD's ability to complete activities of daily living. Presence and frequency of behavioral symptoms were collected by 80% of states. Very few or, in some cases, none of the 10 states, collected PCROs related to care planning and coordination, education, social support, and/or family caregiver burden and support. Discussion: Lack of standardized collection of PCROs hampers researchers’ understanding of ADS. The vast majority of PCROs collected center on participants’ physical health; conversely, data on socialization, social support, and caregiver well-being, which are purportedly the most impactful services offered by ADS centers, are rarely collected. ADS would be well served to focus on these outcome domains as the resulting data could paint a more complete picture of the holistic impact of ADS on PLWD and their caregivers.