PROJECT SUMMARY/ABSTRACT
More than one-third of the one million older adults living in assisted living (AL) communities in the United States
have a diagnosis of Alzheimer's disease or related dementia (ADRD). An estimated 40% of persons with ADRD
will die there with an average length of AL stay of 2.5 years, making AL a common site for end-of-life care. The
AL nursing workforce, comprising close to 300,000 full-time employees, is challenged to meet end-of-life ADRD
care needs. Advance care planning (ACP) discussions are a foundational aspect of care yet can be challenging
for persons with ADRD due to a lack of decision-making capacity. Staff in AL have limited education and
knowledge about ACP discussions with people with ADRD and their families. Our NIH Stage 1b feasibility cluster
randomized trial of the Palliative Care Education in Assisted Living for Dementia Care Providers (PCEAL-DCP)
intervention pilot study in 10 Als, with AL nurses and administrators, indicated that education with a focus on the
principles of ACP and approaches on how to have ACP discussions with health care surrogates of persons with
ADRD could improve staff self-efficacy as well as improve documentation of ACP discussions and hospice use.
The NIH NOSI (NOT-AG-21-049): Dementia Care Workforce for Those Living with Alzheimer's Disease-
Related Dementias calls for research to develop training for direct care workers to identify competencies that
improve organizational processes related to staffing and ADRD care outcomes. This is a five-year, NIH Stage 3
cluster randomized trial (CRT) among 30 ALs (k=30) and residents with ADRD (N=450) with a baseline, three,
and six months post-intervention follow-ups using Donabedian's structure process outcome model to examine
the effectiveness of the PCEAL-DCP on dementia quality-of-care outcomes including increased
documentation of ACP discussions (primary outcome) and rates of hospice admission (secondary
outcome at treatment sites). A secondary aim (NIH Stage 1b) will test in a sample of AL nurses, administrators,
and dementia care coordinators (N=72) from the sample of 30 ALs with a baseline, one, three and six months if
the PCEAL-DCP improves staff self-efficacy and perceived organizational support, which in turn will
increase job satisfaction and job commitment at treatment sites. In exploratory Aim 3 (NIH Stage 1a) we will
evaluate the feasibility of collecting family satisfaction with care at the end-of-life outcome data from 60% of the
resident/family dyads sampled in Aim 1 (N=270) at both baseline and six-months to explore whether satisfaction
levels improve more in treatment compared to control sites. Dissemination of the PCEAL-DCP could be
implemented nationally and improve the quality of dementia care in ALs. Because we have manualized the
training and intervention, and it has already proven to be effective in a Stage 1b feasibility clinical trial and has
been approved through the Continuing Education program, the potential for widespread implementation of the
PCEAL-DCP appears to be high.
