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.
Quality of life is one of the most important and holistic measures of perceived overall well-being across the lifespan. For older adults living with cognitive impairment, quality of life has been conceptualized as consisting of an array of intertwined domains, such as relationship quality, physical health and ability, and opportunities for roles and activities. A subset of measures have been developed to gauge quality of life in older adults living with cognitive impairment, yet no “gold standard” in measurement has emerged. Quality of Life – Alzheimer’s Disease (QOL-AD) is one of the most commonly used and long-standing measures, yet it was developed in 2002 and has yet to be updated to reflect the evolution of our understanding of quality of life in adults living with cognitive impairment. Drawing from the literature on adults living with intellectual and developmental disabilities (IDD), the researchers identified several domains and items to update and expand the applicability of the QOL-AD measure. The proposed revised measure, Quality of Life – Alzheimer’s Disease/Intellectual and Developmental Disabilities (QOL-AD/IDD), is intended for adults living with cognitive impairment regardless of age or cause of impairment (e.g., dementia, IDD). The QOL-AD/IDD retains the format of the original measure, most notably the useful prompts that accompany each item and the supplemental proxy measure for caregivers. In this presentation, the researchers will discuss the development of the QOL-AD/IDD and ongoing (e.g., Delphi review) and planned steps to evaluate the reliability and validity of this promising measure.
The processes involved with developing, funding, and conducting intervention studies in long-term care present a unique set of challenges for researchers. In this presentation, we explore the experiences of researchers evaluating an online nature-based intervention in assisted living. The first challenge lies in creating or finding a novel intervention specific to the setting and population. In this case, the researchers found and tailored an existing online, interactive program that focused on ranch life in rural Montana – Days at Dunrovin. In partnership with the developer of Days at Dunrovin, a group intervention was developed specifically for long-term care settings. The second challenge is finding a facility that has the desire, environment, and staffing to support the intervention. In this case, the researchers were able to partner with an assisted living facility that had an owner who was interested in research, an environment that matched the experimental design of the study, and a staff that was eager to find new ways for residents to engage with the world, particularly during the COVID-19 pandemic. The final challenge involves selecting a funding mechanism that best fits the needs of the study. In this case, the researchers targeted a private foundation that provided ample funding along with the latitude and flexibility that allowed the study to evolve and pivot as necessary. This presentation concludes with recommendations for both budding and seasoned researchers who seek to introduce creative interventions into long-term care settings.
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