Abstract:
Background: Although pain is prevalent among persons with dementia (PWDs), it goes underrecognized and undertreated due to impairments in the cognitive abilities needed to self-report it. Exploring spousal caregivers’ pain mental models may provide valuable insight into how these informal caregivers conceptualize pain, and how such conceptualizations affect their identification of and response to PWDs’ pain. Study Objective: The purpose of this study was to identify and describe the pain mental model(s) of spousal caregivers of community-dwelling veterans with dementia and pain. Research design: Qualitative Participants and research context: Thirty female spousal caregivers (11 Black, 10 non-Hispanic White, and 9 Hispanic) participating in a psychosocial intervention aimed at preventing aggression in veterans with pain and dementia comprised the present sample. The PWDs all received their primary care from the Veterans Health Administration (VHA). Methods: Secondary data analysis of intervention recordings. Data was analyzed using thematic analysis. Results: Two themes were identified: Pain Assessment Beliefs and Knowledge (PA) and Pain Management Beliefs and Knowledge (PM). The PA theme included four subthemes, and the PM theme included seven subthemes. A pain mental model is proposed in which PA and PM affect the ways they answer two PA-related questions (Is there a problem?, Is this problem pain?) and three PM-related questions (Is the pain treatable?, Is it worth treating?, How do I prefer to treat it?). These caregivers are moved to action when they “connect the dots” by identifying a problem in PWDs’ behavior, labeling the problem as pain, and identifying a response (i.e., a treatment approach) they consider worth trying. Conclusion: Caregiver disconnects in understanding of PWDs’ behavior are common in this study sample, and predictably lead to inaction. The proposed mental model provides further explanation about how caregivers do or do not synthesize and apply pain knowledge and experience, allowing for the identification of potential areas of intervention (e.g., pain psychoeducation) to improve pain treatment for the PWDs under their care.
