Exploring Experiences of Pain Management Among Family Caregivers of Community-Dwelling Older Adults With Dementia

Background Pain is often underreported and under-treated in older adults with dementia. The role of family caregivers (FCGs) in managing pain for their loved ones with dementia living in community has been significantly burdensome. Surprisingly, research has not delved into the experiences of FCGs' concerning pain management in this context.Methods A qualitative descriptive study was conducted to gain a deep understanding of FCGs' experiences in managing pain for their loved ones. Family caregivers participated in semi-structured face-to-face or telephone interviews. Inclusion criterion included being an adult providing care to community-dwelling older adults with dementia. Recruitment stopped upon reaching thematic saturation. Basic demographic characteristics was also collected. Constant comparison analytic method was employed.Results The study included 25 FCGs in central Virginia, spanning ages from 29 to 95. Participants were predominantly white, female, married, and had a minimum high school education. Most of them were adult children (52%) or the spouses (28%) of the care recipients. Four thematic categories emerged around exploring FCGs' pain management experiences: (1) Values; (2) Barriers; (3) Support; and (4) Adaptation. Each theme included sub-themes.Conclusion Family caregivers follow their values to make decisions in pain management. Barriers existed for effective pain management. Adaptation and support from professional or formal caregivers greatly improved FCGs' perception of their competence in pain management. The finding underscores the need for further research and the development of interventions aimed at enhancing FCGs' perception of self-efficacy in this crucial aspect of caregiving.