Abstract

Personal care interactions can provide vital opportunities for caregivers to engage with a person living with advanced dementia. However, interactions may also be a contentious experience, what makes this so is not fully understood. We aimed to examine features of personal care interactions between caregivers and people with advanced dementia to understand how care may be improved. This was a naturalistic observation study using one-off video-recorded observations of personal care interactions between 14 people with advanced dementia and 12 caregivers (n = 7 care-home staff, n = 5 family carers) in the United Kingdom (total observation time 03:01:52). Observations were analyzed with observational video coding to determine the frequency of actions of people with dementia and qualitative content analysis for in-depth examination. Refusals of care were present in 32% of video sections. Active engagement of people with dementia was observed in 66% of sections. Rare contentious interactional components were characterized by the person with dementia appearing to show uneasiness and caregivers being flustered and uncertain. However, caregivers typically emanated a nurturing attentiveness, were attuned to the person, and skilled in seamlessly supporting them through care activities. Findings draw on real-world empirical evidence to reinvigorate the notion of person-centeredness in dementia care. The findings provide much needed insight into practical ways to improve care interactions for people with advanced dementia and enhance their personhood. Appropriate training/guidance for caregivers could support positive personal care experiences for both the person with dementia and caregiver.

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