Accountable Care for Persons with Advanced Dementia

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Project Summary An important public policy challenge is how to provide patient- and family-centered care for an increasing number of Americans afflicted with Alzheimer’s Disease and Related Dementias (ADRD). The proposed research team has documented that, despite family preferences for care that maximize comfort, patients too often receive burdensome treatments and unnecessary health care transitions in the last days of life. In part, volume-based compensation incentivizes multiple transitions and the fragmentation of care experienced by people with ADRD. This contributes to care of limited value that is potentially inconsistent with patients’ prior stated wishes or the informed preferences of their family. Accountable Care Organizations (ACOs) are one of the largest recent changes in Medicare payment and reforms in health care delivery. An ACO is a group of health care providers responsible for quality and cost of a defined population based on the preponderance of visits to a primary care provider. Through enhanced care coordination and improved communication between health care providers and families about prognosis and goals of care, ACOs have the potential to improve care during the last stages of life. Preliminary research conducted at a single ACO with a home-based palliative care program found reduced hospitalization and delayed institutionalization in persons considered high-need, high-cost. Yet, no study has examined the intersection of ACOs and the care of persons with advanced ADRD. The overriding objective of this proposal is to further our understanding of how the relatively new ACO approach to care delivery impacts the experience and outcomes of vulnerable older persons with advanced dementia by addressing the three following questions: 1) To what extent are advanced ADRD patients integrated in ACOs? (Aim 1); 2) Do ACOs improve end-of-life care outcomes for advanced ADRD patients? (Aim 2); and 3) Which ACO characteristics are associated with better care of advanced ADRD patients? (Aim 3). We will leverage our team’s extensive content and methodological expertise to use MDS assessments to identify persons with advanced ADRD that either had a nursing home (NH) stay post-hospitalization or resided in a NH, as well as the Program Project Grant infrastructure of linked national datasets (Minimum Data Set, Medicare Claims data) to address these key health policy issues in the intersecting fields of palliative care, dementia, and health services research. Our proposed research will be the first national study of the role and impact of ACOs in the care of persons with advanced ADRD. Furthermore, it will capitalize on rich clinical data from MDS assessments to create prospective and retrospective cohorts of persons with advanced ADRD, employ novel cross-temporal propensity matching methods, and examine the growth of ACOs, enhancing our ability to draw causal inferences from an observational study. Knowledge gained from this research will provide important answers about the role of ACOs in the care of persons with advanced dementia with the ultimate goal of delivering high-value care that respects patients’ rights to make choices about their medical care.