Upstream Approaches to Improve Late Life Care for People Living with Dementia

PROJECT SUMMARY - NIH R01AG066139 - 9/15/20-4/30/24

The long-term goal is to improve the quality of end-of-life care provided to families and people living with Alzheimer’s disease and its related dementias (dementia) by generating population-level evidence on the public health impact of community-based support structures including skilled home health care. Alzheimer’s Disease diagnosis in racial and ethnic minority populations is projected to more than double by 2030. Large racial and ethnic differences and disparities exist in well-established end-of-life care quality indicators (inpatient admissions, hospice use, place of death), and in people living with dementia some of these differences may be compounded. One understudied approach to improving dementia care among racial/ethnic minority and socioeconomically disadvantaged populations is the use of skilled home health care (a benefit under Medicare and Medicaid). The short-term goal for this R01 is to define racial/ethnic differences in the effects of skilled home health care on indicators of end-of-life care quality (e.g., inpatient admissions, use of hospice, and place of death) as a function of dementia diagnosis. The central hypothesis is that “upstream” exposure to home health care prior to and during the final year of life has a cumulative and beneficial effect on "downstream” end-of-life care quality indicators: (1) inpatient admissions, (2) hospice utilization, and (3) place of death. The scientific premise for this work is that PLwD have complex medical and behavioral health needs, and many rely on family caregivers to help with activities of daily living and coordination of medical care. Too few benefit from skilled home health care. As cognitive function deteriorates from mild symptoms and behavioral changes to more advanced illness, skilled home health care may help prevent avoidable hospitalizations, and minimize burdensome transitions across care settings at the end-of-life. The central hypothesis will be tested by pursing three specific aims: Examine the relationship between receiving skilled home health care prior to and during the last year of life and: 1) inpatient admissions (type, frequency and length) in the last year of life, 2) hospice utilization (timing and setting) in the last year of life, and 3) place of death (e.g., hospital, home, hospice in a hospital, hospice at home). The aims will be tested using linked Medicare data sets to examine the effect of skilled home health care utilization on racial and ethnic disparities in end-of-life outcomes among people diagnosed with dementia compared to people not diagnosed with dementia. The research proposed in this application is innovative, in the applicant’s opinion, because it focuses on evaluating an underutilized core benefit of Medicare through evaluating the effect of skilled home health care access on disparities in dementia care quality. Successful completion of proposal aims will have a sustained and powerful impact by providing needed and actionable evidence to reduce disparities in care for racial and ethnic minority older adults living with dementia. The project will significantly impact the design, development, and evaluation of population health system interventions to eliminate or reduce disparities in care and end-of-life outcomes among people living with dementia.

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