Beyond the Primary Caregiver: A Scoping Review of Family-Centered Dementia Caregiving Programs

Most dementia caregiver programs focus on a single caregiver, overlooking diverse caregiving networks that include family, friends, and relatives who provide care. We conducted a scoping review of family-centered dementia caregiving programs (ie, interventions with at least 2 caregivers) to (1) describe program components; (2) identify how family members are included; (3) summarize family-level measurements used and the effectiveness of family-centered programs on these outcomes; and (4) explore if and how programs are culturally adapted. We identified 36 articles and 10 programs (individual-family programs, n = 8; multi-family group programs, n = 2). Programs included similar content and effectiveness was reported by the primary caregiver and measured at the individual level. To better support diverse caregiving networks, caregiving programs may benefit from identifying core components of caregiving programs, including best practices in engaging family caregivers, acknowledging varied family structures and the fluidity in caregiving, and measuring strengths and deficits at the family-level.