Representing the Needs of Rural Caregivers of People Living With Alzheimer’s Disease and Related Dementias Through User Personas

Abstract

Background and Objectives Rural caregivers of people living with Alzheimer’s disease and related dementias (ADRD) face unique caregiving challenges. Current interventions do not address many of the systemic barriers experienced by rural ADRD caregivers, including barriers related to geography, healthcare services access, and financial insecurity. The objective of this study was to gain a deeper understanding of rural ADRD caregivers’ needs, strengths, and strategies in obtaining caregiving support, and to represent these attributes in the form of personas that can be used to design interventions for rural ADRD caregivers. Research Design and Methods In this qualitative user-centered design study, we conducted semi-structured interviews with self-identified caregivers of people living with ADRD in rural areas. Interview data was copied to a virtual whiteboard, and affinity diagramming was used to confirm a priori attributes and yield inductive attributes relevant to rural ADRD caregivers. Attributes were assigned to personas, which were then validated through team-based discussion, consultation with a study advisory board, and review by rural caregivers and community partners. Results Analyses of N=19 interviews yielded seven inductive attributes relevant to rural ADRD caregivers of persons living with ADRD and five distinct personas: Capable Christine, Connected Connie, Isolated Irene, Learning Larry, and Discerning Dan. Personas differed on inductive attributes including financial security, subjective rurality, attitudes, connectedness, and information behavior, including preferences for traditional versus technology-based information seeking. Discussion and Implications The personas identified in the present study can be used as tools to represent and efficiently communicate the intersection and interaction of attributes relevant to designing interventions and technologies to meet the support needs of rural ADRD caregivers.