Responding to the Needs of Dementia Care Partners: Recommendations for Policy Change at the State and Federal Levels.

Abstract

The need to optimize supports of Alzheimer's disease and related dementias (ADRD) care partners through policy innovation is high. This study sought to frame the care and support needs of multiple historically underrepresented populations who may be underserved and/or have difficulty accessing culturally specific services and determine specific policies that may reduce ADRD care partner burden and improve wellbeing. Qualitative data were gathered through interviews (N = 24) with leaders of organizations that support people living with ADRD and focus groups (N = 5) with dementia care partners from four communities historically underserved in the United States (Asian, Black, Indigenous, and Latinx). Organizational leaders also participated in a modified Delphi process to identify priorities for supporting care partners. Multiple themes were identified including: information resources; navigation and coordination within and across systems; access to clinicians, care teams, health/personal records; legal and financial issues; in-home and respite care; psychological and physical health support for care partners; and flexibility of schedules. Policy-related priorities for supporting care partners informed development of specific policy recommendations related to financing, supports, and respite. State and national policies can be enhanced to address these priorities across populations in ADRD care partner supports, especially for historically underserved groups.