Caregiving Challenges from Persistent Pain Among Family Caregivers to People with Dementia

Background and objectives: Many family caregivers to people with dementia experience persistent physical pain. Though caregivers' pain is associated with poor caregiving outcomes, there is little research on how pain challenges caregiving to yield poor outcomes. This study developed a typology of caregiving challenges from pain among family caregivers to people with dementia.

Research design and methods: We conducted semi-structured, in-depth interviews with 25 family caregivers living with persistent pain and caring for people with dementia. We inductively analyzed data via a thematic analysis approach, wherein we identified and categorized caregiving challenges stemming from caregivers' pain. We then analyzed how challenges were related to one another and their consequences for caregiving outcomes.

Results: Analysis revealed three interrelated categories of caregiving challenges from living with pain: 1) physical (e.g., difficulty lifting care recipient), 2) psychological/emotional (e.g., worry about future care if their pain condition worsens), and 3) familial/relational (e.g., resentment towards family without pain for not helping with care). Caregivers reported that these challenges compounded one another in ways that made both caregiving and pain management more difficult. Moreover, challenges led to caregivers delaying or skipping care tasks. The nature of challenges and their connection to caregiving outcomes were dependent on various supporting factors, such as whether caregivers reported benefits from their own pain (e.g., greater empathy).

Discussion and implications: The resulting typology informs a conceptual model to guide future translational research on caregivers' pain, including illuminating promising intervention targets of pain self-management programs for family caregivers to people with dementia.