Caregiver burden has many definitions in aging research. To better understand how caregivers conceptualize and describe challenges in their own words, we analyzed Reddit posts about the difficulties of caring for an older adult.
Inductive content analysis of a stratified random sample of posts from 5 subreddit communities from December 2022 to December 2023 (r/dementia, r/AgingParents, r/CaregiverSupport, r/caregivers, and r/caregiving); included posts described any negative experience about caregiving. We excluded posts written by paid caregivers and those caring for persons identified as younger than 65. We coded themes and narratively synthesized findings with a focus on how findings could inform the theory and measurement of caregiver burden.
We identified 387 posts from 315 unique caregivers caring for 352 care recipients. Where reported, mean caregiver age was 40 (SD 13.7) and 60% were female, and mean care recipient age was 79 (10.4 SD) and 61% were female. 69% of caregivers were children. Users provided intense descriptions of the challenges of caregiving. Analysis yielded 5 themes, illustrating how caregiving is difficult when it: (a) disrupts the caregiver’s sense of self, (b) leads to resentment, (c) leads to burnout, (d) strains family relationships, and (e) encounters challenges navigating the long-term care system.
In unstructured qualitative data, caregivers describe their challenges in terms other than burden and include frustrations with family members and the long-term care system. Results could inform dimensions of caregiver strain to include in caregiver burden measures and targeted intervention.