Person-Reported and Health Care Utilization Outcomes of Home and Community Based Care Recipients With and Without Alzheimer's Disease and its Related Dementias

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Project Abstract: More than 5 million Americans live with Alzheimer's disease and related dementias (AD/ADRD), and they receive care from more than 16 million family caregivers. Providing high quality care in the community for people with AD/ADRD is a national priority. Persons with AD/ADRD who are enrolled in Medicaid are eligible to receive home and community-based services (HCBS). HCBS programs vary by state but in general include supportive services (e.g., adult day services and personal care). HCBS are provided by states as an alternative to institutional care and are believed to promote the clients’ independence, health, well-being and help avoid or delay more intensive health care utilization (e.g., nursing home admission). But very little is known about the impact of HCBS for people living with AD/ADRD, including whether person-reported outcomes differ for those with and without AD/ADRD, and whether person- reported HCBS outcomes influence use of health care. To determine whether HCBS improve outcomes that matter to clients, we must first better understand the role of these services from the perspective of care recipients (i.e., person-reported outcomes).Toward that end, we propose to use data from the National Core Indicators-Aging and Disabilities (NCI-AD) Adult Consumer Survey collected between 2017-2020 (n>17,000 HCBS respondents each year), which measure HCBS quality and service outcomes from clients’ perspectives. We also propose to link NCI-AD and Medicare and Medicaid claims for respondents in Minnesota (the only state where this linkage is currently possible) to understand the relationship between person-reported HCBS outcomes and health care use. In response to RFA AG-20-037 we propose the following specific aims: 1. Document trends in the HCBS used and/or desired by clients with and without AD/ADRD. We expect that persons with AD/ADRD will indicate a greater desire to use more HCBS than they currently receive compared to those without AD/ADRD. 2. Determine client and state-level factors that promote person-reported HCBS outcomes among persons with and without AD/ADRD. Hypothesis 2a: Persons with AD/ADRD will have significantly poorer person-reported HCBS outcomes than persons without AD/ADRD. Hypothesis 2b: Greater state investment in HCBS relative to institutional care will be associated with significantly more positive person-reported outcomes for clients both with and without AD/ADRD. 3. Determine the association between health plan-level HCBS person-reported quality and health care use (emergency department, hospitalizations, potentially avoidable hospitalizations, and nursing home admission) for persons with and without AD/ADRD. Clients who receive HCBS from high quality plans (based on person-reported outcomes) will use less health care than their counterparts, and this difference will be larger for clients with AD/ADRD. This study has the potential to yield new evidence both for how HCBS influence important outcomes for persons with AD/ADRD, and for the policy-relevant outcome of health care use.