“Each Day We Lose a Little More”: Visual Depictions of Family Caregiving for Persons with Dementia

Abstract

More than 11 million Americans provide unpaid care for people with dementia (PWD) and need emotional, financial, and physical support. This study explored how participants in Caregiver Speaks, a social networking and image-based storytelling intervention designed to help caregivers make meaning of caregiving, described their caregiving experiences and needs. Strategies of thematic analysis were used to identify patterns in 28 different caregivers’ images ( N = 59) and text interactions on social media. Caregivers identified as white (71.4%), as women (92.9%), and as an adult child or child-in-law of the PWD (85.7%). Through images and text, caregivers explained interrelated changes in their behaviors (e.g., managing dual roles), thoughts (e.g., realizing severity of illness), and feelings (e.g., trapped) throughout the caregiving process. Findings reiterate that caregiving changes significantly over time, that visual storytelling helps to concretely capture those changes, and that interventions are needed to respond to caregivers’ hardships across the caregiving time span.