A growing number of older adults with Alzheimer?s Disease and Related Dementias (ADRD) are receiving care and dying in assisted living (AL). By 2015, 18.4% of community deaths among fee-for-service Medicare beneficiaries receiving hospice took place in AL. A number of recent studies have raised concerns about the quality of end-of-life care delivered in AL. For example, AL residents on hospice were less likely to receive opioids for pain than were individuals with home hospice. Moreover, given the reliance on hospice claims data to study end-of-life care in AL to date, we have limited knowledge about AL residents who die without hospice services. If we are to inform policies and practices that promote better quality end-of-life care in AL, there is a critical need to examine the determinants of dying experiences for AL residents with ADRD, nationally. Using a methodology developed by our team to identify Medicare beneficiaries who resided in large AL communities (25+ beds), we propose to identify decedents with a stay in AL, and to examine their end-of-life care experiences. The overall objective of this application is to identify the determinants of better end-of-life care experiences in AL through administrative claims data, a survey of AL administrators, and interviews with the next of kin of AL decedents. We plan to accomplish the overall research objective by pursuing a mixed- methods approach to the following specific aims: 1) examine time spent in AL during the last month of life and potentially burdensome care (i.e. transitions in last three days of life and repeated hospitalizations) for an ADRD AL decedent cohort and determine if differences exist between states with and without supportive end- of-life regulations, 2) document end-of-life care processes using data from a national survey of AL administrators, and examine the association between these processes, state regulations, and time spent in AL in the last month of life and burdensome transitions for an ADRD decedent cohort, and 3) explore perceptions of the quality of end-of-life care received by ADRD AL decedents through in-depth qualitative interviews with next of kin, from a purposeful sample of ALs with more vs. less established end-of-life care processes in states with and without supportive end-of-life regulations. The expected outcomes from this proposal include a better understanding of state regulations and processes of care that will improve care of persons with ADRD dying in AL. The proposed research will ultimately guide policy and practice decisions to ensure that AL residents receive high quality end-of-life care.
The proposed research is relevant to public health because it focuses on the delivery of end-of-life care to a growing population of assisted living (AL) residents suffering from Alzheimer?s Disease and Related Dementias (ADRD). This project is particularly relevant to the mission of the NIA because it capitalizes on existing national administrative data, which is combined with primary survey data of AL administrators and qualitative interviews with bereaved next of kin. The overall objectives are to identify the determinants of better end-of-life care experiences in AL, and to provide evidence that will guide policy and practice decisions to improve the quality of end-of-life care provided to AL residents with ADRD.
