Racial Disparities in Distressing Symptoms for Nursing Home Residents at EOL with Alzheimer’s Disease and Related Dementias

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PROJECT SUMMARY/ABSTRACT Alzheimer's disease and related dementias (ADRD) are increasing in prevalence and are among the most common causes of death and costliest diseases in the U.S. Approximately 60% of people with ADRD in the U.S. die in nursing homes (NHs). To maximize the quality of end of life (EOL), a palliative approach is needed that minimizes preventable or treatable distressing symptoms (e.g., pain, respiratory distress) and associated conditions (e.g., falls, pressure ulcers, aspiration) that cause physical and psychological distress. Factors, such as resident ADRD status (i.e., no, mild, moderate, or severe cognitive impairment), resident race, and NH-level racial segregation are associated with EOL care practices, but little is known about how these factors relate specifically to distressing EOL symptoms. Research is needed examining how racial disparities may intersect with residents' ADRD status to increase the risk of experiencing distressing symptoms. Current research lacks the perspectives of stakeholders, especially NH residents, family, and staff from racially segregated NHs who can speak to multi-level factors related to distressing symptoms. The proposed pre-doctoral training fellowship will include a mixed-methods study to examine differences related to ADRD status, race, and racial segregation and explore NH stakeholder views of distressing EOL symptoms. Aim 1 is to explore differences in distressing symptoms at EOL related to resident ADRD status, resident race, and NH racial segregation. Aim 1 will use U.S. MDS 3.0 data to examine the relationships of 19 distressing symptoms (e.g., pain, respiratory distress, falls) with resident ADRD status, race, and level of NH racial segregation, including confounding variables (e.g., resident age, sex, comorbidity burden and NH size, ownership, percent of residents using Medicaid). The primary hypothesis is that residents of color will experience worse symptom outcomes overall, but these differences will largely be explained by NH racial segregation. The secondary hypotheses are that there will be interaction effects for resident race*resident ADRD status and resident race*NH racial segregation. Aim 2 is to engage NH stakeholders to understand racial disparities in distressing symptoms for NH residents with ADRD at EOL. Through semi-structured interviews with stakeholders (e.g., residents, family, friends, care staff, managers) from racially segregated NHs, Aim 2 will explore stakeholder views of how distressing symptoms impact residents at EOL and factors associated with differences in distressing symptoms related to ADRD status, race, and racial segregation. Outcomes will inform future research by specifying stakeholders' perspectives about which symptoms are distressing for residents living in racially segregated NHs and potential causal factors of disparities at multiple levels. This fellowship will provide the trainee with a foundation in health equity, EOL care research, and use of the rich MDS dataset to launch a career as a nursing scientist. The findings will identify key areas for EOL care improvement and address barriers to health equity to reduce suffering among NH residents with ADRD at EOL.