SAGE LEAF 2: An Online Self-Guided Positive Emotion Regulation Program to Reduce Alzheimer's Dementia Caregiver Burden Delivered through Caregiver-Serving Organizations

Project Summary In the US alone, more than 11 million family caregivers provide care for someone with Alzheimer's disease or other dementia on a daily basis.1 These family caregivers have been estimated to shoulder 70% of the total cost of care over their care recipient’s lifetime, costs which include medical bills and unpaid caregiving hours.2 Caregiving-related stress contributes to social isolation, loneliness, and physical illness and increases the risk of caregiver death.3-7 Currently, most caregiver interventions focus on reducing burden, stress, and negative emotions. However, a growing body of research from our team and others demonstrates that positive emotion is uniquely associated with beneficial health outcomes, independent of the effects of negative emotion,8-12 and holds promise for countering the negative psychological and physical health effects of caregiving. We developed and tested a facilitator-delivered positive emotion regulation intervention for dementia caregivers that showed significant improvements in positive emotion, positive aspects of caregiving, depression, and anxiety compared to an emotion reporting waitlist control.13 However, the expense of facilitator delivery poses challenges to the implementation, dissemination, and commercialization of LEAF. Online self-guided programs are more easily disseminated, however, they generally lack a social connection which, given the high rates of loneliness and social isolation among dementia caregivers,14,15 is problematic. In phase I of this program of research (R43AG065080; Yang and Moskowitz, MPI), we tailored a self-guided online positive emotion regulation intervention (called SAGE LEAF - Social Augmentation of self-Guided Electronic delivery of the Life Enhancing Activities for Family caregivers) by incorporating social connection components for caregivers going through the program individually (vs in groups; See Phase I progress report). Interviews and focus groups with caregivers indicated a desire for SAGE LEAF to host interactions within cohorts of caregivers participating at the same time. A proof-of- concept study indicated that the SAGE LEAF prototype was feasible and acceptable. Caregivers rated the social enhancements as moderately usable and suggested ways to make the features more visible on the user dashboard. In the proposed Phase II project, we will further develop SAGE LEAF to include features to foster implementation by clinics, care centers, and other caregiver-serving organizations (CSOs) for groups of caregivers to leverage the benefits of social connections within the virtual SAGE LEAF environment and will conduct a pragmatic trial in which SAGE LEAF is implemented through the CSOs.