Applying Epistemic Network Analysis to Explore The Distribution of Work Across Dementia Care Networks

Abstract

Persons living with dementia (PwD) rely on the support of informal caregivers such as family and friends, who often perform caregiving work within a network of both informal and formal supports. Recent research has provided insight into the size and structure of care networks, however little is known about how the caregiving work is performed and distributed across the various roles. We applied Epistemic Network Analysis (ENA) to transcripts of 30 semi-structured interviews with primary dementia caregivers to create network graphs that illustrate the difference in how primary caregivers perceive the work performed between informal and formal supports. We identified significant differences in the way that primary caregivers leverage the types of support in their care networks, expanding our understanding of the function and needs of a dementia care network.