Inequities in Home and Community-Based Services Access and Disparities in Alzheimer's Disease and Related Dementias

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PROJECT SUMMARY – PROJECT 1 Public financing of care for patients with Alzheimer’s disease and related dementias (ADRD) has historically favored long-term nursing facility care over care provided in the community. Most individuals, however, express the desire to remain in the community (rather than an institution) for as long as possible. The 1999 U.S. Supreme Court Olmstead decision, and several Federal and state initiatives to encourage balancing of Medicaid-covered long-term services and supports (LTSS) toward community settings, have led to a steady expansion of home- and commu- nity-based services (HCBS), including medical and non-medical services to support nursing-home eligible individu- als wishing to remain in the community. The quality of institutional care is lower, and the need for LTSS is greater in Black and Hispanic adults with ADRD, and among people with disabilities. Yet the expansion has occurred without substantial evidence regarding how HCBS compares to available alternatives and whether it does, in fact, reduce inequities. Using a mixed methods sequential explanatory design and contemporary Medicaid data linked to Medi- care data for dual-eligible beneficiaries, Project 1 will complete three aims: Aim 1. To identify administrative and self-reported predictors of HCBS service receipt in a national sample of beneficiaries dually eligible for Medicare and Medicaid with claims-based diagnosis of ADRD between 2010 and 2024. Aim 2. To estimate the impact of dif- ferences in HCBS service receipt on disparities in nursing home use, quality of life and function, adverse events and social risks, end-of-life care, and mortality among dual-eligible beneficiaries with claims-based diagnosis of ADRD between 2010 and 2024. Aim 3. To explore ADRD patient and care partner decision-making processes re- garding HCBS use and Medicaid administrators, HCBS agency, and direct service providers’ assessments of barri- ers and facilitators to HCBS expansion for beneficiaries with ADRD. By exploring state and Federal policies and mechanisms that enhance or impede equity in LTSS access and outcomes, we will identify policy levers for reduc- ing disparities by race, ethnicity, and disability among adults with ADRD. In addition to collaborating with Core B and Core C in this Program Project Grant (PPG), this work will also benefit from data derived in Project 3 (estimates of regional primary care quality for ADRD for Aim 1), collaboration with Project 4 to contextualize acute-care out- comes in Aim 2, and partnership with Project 2 to recruit key informants for Aim 3. By exploring state and Federal policies and mechanisms that enhance or impede equity in LTSS access and outcomes, this project will synergize with the larger PPG to identify policy levers for reducing disparities by race, ethnicity, and disability among adults with ADRD.