Impact of AD/ADRD on Health-Related Outcomes in a Statewide Population Enrolled in a Publicly-Funded HCBS Waiver Program for Older Adults

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Project Summary Many states are aggressively reforming their long-term services and supports systems by constraining the growth of nursing homes and expanding availability of home and community-based services (HCBS) through Medicaid waiver programs, which intend to maximize independent living for individuals at risk for nursing home care. Eligibility criteria for Medicaid HCBS waiver programs include financial and health-related factors, the latter which typically include functional and cognitive deficits. Medicaid HCBS waiver program populations of older adults across the states include individuals living at home with and without diagnosed Alzheimer's disease and related dementia (ADRD) as well as with a wide range of cognitive deficits even without a diagnosis of ADRD. ADRD is associated with many adverse health-related outcomes in population-based studies of community-dwelling older adults; however, whether and how ADRD and cognitive impairment severity are associated with adverse outcomes among older adults receiving services from Medicaid HCBS waiver programs is unknown. Little is known about the strength of informal caregiver support systems and their effects on adverse outcomes for older adults with and without dementia in HCBS programs. Success in meeting self-identified goals of care among older Medicaid HCBS waiver participants, and barriers to achieving these goals, have also not been explored in the context of having ADRD. Moreover, how race and ethnicity might modify effects in associations between ADRD, informal support systems, and health outcomes is unknown in this population. We propose to address these important and interrelated knowledge gaps guided by person-centeredness and health disparities conceptual frameworks. We will study a statewide population enrolled in Connecticut's Home Care Program for Elders (CHCPE), the Medicaid HCBS waiver program for older adults. CHCPE has a racially and ethnically diverse population, and State Medicaid policy decision-makers have expressed strong interest in improving dementia care for CHCPE participants. In Connecticut, a person-centered approach to care planning and implementation guides all Medicaid HCBS waiver program policies and practices. Specific aims guiding this study are to, in the CHCPE participant population: Aim 1: Determine how living with ADRD is associated with health service utilization, including emergency department visits, hospitalizations, and post-acute or long-term admission to nursing homes. Aim 2: Determine whether strength of the informal caregiver support system is associated with utilization of all health services under study, according to ADRD status and racial and ethnic group membership. Aim 3: Determine how living with ADRD, and racial and ethnic group membership, are associated with meeting self-identified goals of care and person-centered outcomes based on their HCBS-related experiences. The study team will disseminate findings to state Medicaid officials and other stakeholders concerned with how best to help CHCPE clients living with ADRD avoid or delay adverse health outcomes and achieve self- identified goals of care. Dissemination activities also will include presentations at annual meetings of relevant national professional and scientific organizations, and publications in relevant peer-reviewed journals.