“I’ve learned to just go with the flow”: Family caregivers’ strategies for managing behavioral and psychological symptoms of dementia

Abstract

Background and objectives Behavioral and psychological symptoms of dementia are highly prevalent, stressful, and challenging to manage. Caregivers’ approaches for handling these behaviors have implications for both care partners’ well-being. Yet the specific strategies that caregivers use in their daily management of behavioral and psychological symptoms of dementia are relatively unknown. This study used in-depth focus group data to examine family caregivers’ strategies for managing behavioral and psychological symptoms of dementia. Design As part of a larger study (NINR R01NR014200), four focus groups were conducted with a total of 26 family caregivers of older adults with dementia. Caregivers were asked to describe the strategies they use to manage behavioral and psychological symptoms of dementia. Data from audio-recorded sessions were transcribed, coded to identify relevant concepts, and reduced to determine major categories. Results Caregivers managed behavioral and psychological symptoms of dementia through (1) modifying interactions within the care dyad (e.g., simplifying communication); (2) modifying the care environment (e.g., using written prompts); (3) activity engagement; (4) humor; (5) self-care; and (6) social support. Conclusion Family caregivers manage behavioral and psychological symptoms of dementia using strategies to minimize stress and address the needs of both care partners. Caregivers’ own accounts of these approaches reveal a window into their everyday management of difficult behaviors. The present findings generate key information for routine clinical care and targeted interventions to promote caregiver well-being.