Understanding and Improving Healthcare Decision-Making and Outcomes for People Living with Alzheimer's Disease and Related Dementias

This Program Project analyzes and seeks to improve healthcare practice patterns, decision-making processes, and treatment effectiveness for patients with Alzheimer’s disease and related dementias (ADRD). Supported by a set of cores that draw together clinical and economic expertise, vast novel data sources, and cutting-edge analytical tools, the component projects focus on the particular decision-making challenges faced by providers, caregivers, and patients in caring for the complex needs of people living with ADRD and the role these play in driving differences in access and outcomes. There are unique aspects, potential barriers, and variations in how healthcare systems provide healthcare to people with ADRD, as these patients may be less capable of describing their symptoms and health histories, or following through on medical recommendations, and they may rely substantially on formal and informal caregivers in navigating healthcare services. We seek to understand and improve healthcare decision-making and outcomes for patients with these complex needs. The Program’s component research projects address influences on healthcare decisions, and their impact on outcomes and differences, across a set of health conditions and settings. We deploy innovative machine learning methods both to characterize patients’ needs and treatment patterns and to build tools that can assist physicians with patient diagnostics, even when patients’ communication of their symptoms and health histories may be limited. We examine the factors that affect both provider and patient decision-making, including pressured decision-making environments such as Emergency Departments, patient-provider demographics, administrative burdens on patients and caregivers such as complex insurance rules, provider incentives, and providers’ patient caseload and fatigue in influencing healthcare delivery and health outcomes for patients with ADRD. Integrative support for the Program Project is advanced through three cores that provide common infrastructure, data, and expertise needed by the projects, and to ensure that they work synergistically and seamlessly as a cohesive program.