Stakeholder Engagement to Enhance Interventions for Family Caregivers of People with Dementia: A Case Study of Care to Plan

Abstract

Family members are prominent providers of necessary care to persons with dementia. The psychological, emotional, and social costs of care have led to the development of interventions to support these families. Although evidence supports the effectiveness of dementia caregiver interventions, few have been implemented into practice. Stakeholder involvement may increase the potential for interventions to be integrated into community contexts. Utilization of community advisory boards (CABs) have been identified as a successful strategy to engage stakeholders in research and intervention development. Yet, little is known about the use of CABs when developing and refining interventions in dementia care. This article presents a case study of a CAB intended to inform the development and translation of an online dementia caregiver resource: Care to Plan. Qualitative thematic analysis of transcripts from seven CAB meetings over a 3-year period identified two major categories. First, the CAB process: who participated, how meetings were conducted, and issues that arose. Second, Care to Plan improvement: how CAB members provided key stakeholder perspectives resulting in changes in language, functionality, substance, and dissemination. Findings demonstrate how CABs can inform gerontological social work when facilitating the development, translation, and implementation of meaningful, community-based resources for dementia caregivers.

Keywords: Alzheimer’s; Stakeholder engagement; caregiving; community advisory boards; dementia; knowledge translation; thematic analysis.