Engaging Family and Other Unpaid Caregivers of Persons with Dementia in Health Care Delivery: A Model for Chronic and Progressive Disease

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PROJECT SUMMARY This R13 aims to establish a policy- and practice-aligned research agenda for enhancing caregiver identification and engagement in health care settings, using Alzheimer's disease and related dementias (ADRD) as a model for other chronic and progressive diseases. An estimated 18 million caregivers (relatives, friends) provide 1.3 billion hours of care on a monthly basis to community-dwelling older adults (≥65 years). These caregivers perform essential functions within the health care system, from accompanying the care recipient to primary care appointments to facilitating hospital discharge processes to coordinating care across settings and providers. Caregivers of persons with ADRD play a particularly vital role. They provide more hours of care than other caregivers and shoulder additional responsibilities, such as monitoring the older adult's safety, making proxy health care decisions, and acting as an advocate on the patient's behalf. While congress has passed several bipartisan Acts to support caregivers (e.g., the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act; Caregiver Advise, Record, and Enable (CARE) Act; and National Alzheimer's Project Act (NAPA)), little research has evaluated the impact of caregiver-based policies on outcomes for individuals (caregivers, patients), practice, or health care systems, and few evidence-based strategies have been designed to optimize caregiver involvement in health care delivery processes. Needed is a targeted research agenda that is aligned with policy and practice initiatives to ensure a robust, unified approach to family caregiver identification and engagement in health care settings. To establish credible research priorities for engaging caregivers in health care delivery processes, this R13 will use an evidence- based, participatory method designed to elicit multidisciplinary input: the Cornell Institute for Translational Research on Aging (CITRA) Research-to-Practice Consensus Workshop Model. The CITRA Model harnesses practice wisdom by engaging stakeholders with diverse expertise, skills, and experience in a process of articulating and refining research priorities. Using this model as a guiding framework, we will accomplish the three aims: 1) Convene a consensus conference with key stakeholders (social scientists, practitioners, individuals in policy-related roles, and family caregivers) to review the evidence behind existing policies and practices for caregiver engagement in health care delivery, and co-develop a policy- and practice-aligned research agenda, 2) Disseminate conference findings via publication (a peer-reviewed journal article, non- technical report, and media release) and presentation (at national conferences and to the CARE Act and NAPA advisory councils), and 3) Develop and maintain working interest groups to foster continued collaboration among conference attendees who are working on projects related to ADRD caregiving and health care delivery processes.