Effects of Care Setting on Persons with Alzheimer's Disease and their Spouses

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Project Summary Projected growth in the prevalence of Alzheimer’s Disease and other dementias will intensify the challenges of financing and delivering appropriate long-term care, a health care sector traditionally dominated by informal care and Medicaid-funded nursing home care. Developing and expanding home- and community-based care (HCBS) alternatives to institutional long-term care has been a priority for many state Medicaid programs for at least the last two decades. This policy objective is in part a response to people’s widespread preference to receive long-term care in their homes or communities rather than in nursing facilities or other institutional settings. In addition, many policymakers believe that providing home care can help control long-term care costs by enabling people to live in less expensive settings than nursing homes. The desirability of shifting Medicaid recipients from institutional care to HCBS is taken as self-evident in the current policy environment. However, this shift toward HCBS has potentially huge, but unstudied, implications for long-term care recipients and their families, especially those with Alzheimer’s Disease or other dementias. Little empirical evidence exists on the consequences of care setting for this population. Advocates for HCBS laud the policy shift as providing increased access to a preferred mode of care. Critics of HBCS, however, worry that individuals in need of more intensive services are inappropriately shifted into HBCS, and that such shifts reduce care quality. At the same time, HCBS inevitably involves placing substantial responsibility on family (especially spouses) and other informal caregivers, a burden that may involve greater hardships for family members of individuals with Alzheimer’s Disease or other dementia, and may or may not be welcome. This policy debate is based on very little evidence about actual benefits and burdens to the care recipient or the family. If persons with Alzheimer’s Disease or other dementias are shifted into inappropriate modes of HCBS instead of higher-intensity settings, the result may be a substantial exacerbation of challenges affecting both individuals and the family. This area of Medicaid policy – which affects one of the most vulnerable among us -- is currently evolving, high on the national agenda, and prime for modification. Evidence is required to inform these modifications. In this mixed-methods study, we seek to provide a more nuanced examination of the effects of care setting on individuals with Alzheimer’s Disease or other dementias and their spouses. We propose to examine the landscape of HCBS utilization and then empirically assess the consequences of receiving HCBS (rather than institutional care) on both individuals and the spouse, across a range of outcomes, for persons with Alzheimer’s Disease or other dementias. Our results will inform the evolution of Medicaid long-term care policy and point to specific policy modifications that can mitigate the unintended effects of these policies.