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.

Caregiver Experiences with Dementia-Related Feeding/Eating Difficulties

“…They assume critical roles in aiding with eating and drinking, as well as ensuring the provision of nutritionally suitable food that prioritizes both health and safety [8], and they must ensure that the persons living with dementia are provided with adequate food intake during mealtimes [9]. They bear the duty of crafting meals infused with aromatic elements, a practice that is acknowledged for its substantial impact on augmenting meal anticipation and stimulating appetite [10][11][12]. Furthermore, caregivers assume a pivotal role in overseeing alterations in dietary and fluid intake patterns to forestall notable weight fluctuations in persons living with dementia.…”