Caregiver as Navigator-Developing Skills Online (CAN-DO): Developing Dementia Family Caregiver Mastery for Navigating Complex Health, Social Service, Legal, Financial, and Family Systems

Abstract The costs and management of Alzheimer’s disease and related disorders are borne by families, the backbone of the care system for persons living with dementia (PLWD). More than 11 million informal caregivers currently guide the daily lives, fortunes, and care system interactions of PLWD. Promoting effective coping behaviors by strengthening caregivers’ capacities for navigating interactions with systems and structures that provide needed care for PLWD may reduce the high levels of caregiver stress. Ensuring that these systems and structures are effectively accessed and deployed may benefit PLWD. The purpose of this study is to test the Caregiver as Navigator: Develop Skills Online (CAN-DO) program on caregiver mastery and emotional well- being as well as caregiver-reported quality of life and behavioral symptoms of their person. CAN-DO focuses on healthcare navigation to include interactions with health, legal, social service, financial and family care systems and care management activities, recognizing that social determinants affect these interactions. This proposal builds on a wait-list control pilot study, Caregiving during Crisis, which assessed the acceptability, feasibility, and preliminary efficacy of a self-paced, online, asynchronous educational program developed to promote caregivers’ mastery of skills for managing care and navigating care systems during the COVID-19 pandemic. Pilot results confirm the pilot study’s primary and secondary hypotheses. We found a significant group x time difference (p=.041) with a moderate effect size (d-0.524) between the intervention (N=37) and usual care wait-list control (N=38) group at the 2-month point on the key measure of caregiver mastery and comparable significant results for improvements in caregivers’ depressive symptoms and caregiver burden. Participant feedback also guides this iteration of content expansion and course interactivity. The CAN-DO study will employ a three-arm wait-list RCT design in which data will be gathered at baseline and then 2, 4, 6, and 8 months later using standard instruments. We will enroll and intentionally diverse sample of 270 caregivers to be clustered in cohorts of 15 and then randomly assigned in a 2:2:1 ratio to three study groups: CAN-DO; a “Healthy Living” attention control condition of comparable size and interactivity; and usual care. We will conduct qualitative interviews to guide further enhancements.