Abstract

Pain assessment in people with advanced dementia relies strongly on observable pain behaviors, such as facial expressions, body movement, and vocalizations. However, the process of inferring pain in others based on such observations is not well understood. We aimed to investigate which features of facial expressions caregivers rely on when inferring the presence and intensity of pain in people with dementia. A questionnaire, including items on 13 facial descriptors, which were extracted from established observational scales for pain in dementia, was sent to 366 nursing homes in Germany. We asked the nurses to observe patients with dementia and then rate their observations using the facial descriptors, as well as to provide an overall pain estimate of the residents' pain. We used regression analyses to identify which facial descriptors nurses use most commonly to infer whether a person with dementia is in pain and to grade the pain's intensity. Seventy-nine nursing homes participated (22% response rate), and a total of 284 completed observer ratings were returned. The observed individuals suffered from moderate to severe dementia and were observed in everyday care situations. The average pain estimated by the caregivers was slight to moderate. Mainly anatomically based descriptors ("frowning," "narrowed eyes") and indicators of emotional arousal ("looking tense," looking frightened") significantly predicted the overall pain ratings by nurses, explaining approximately 45% of the variance. Although all presented facial descriptors were used by the nurses, some descriptors were used clearly more frequently than others to infer whether a resident with dementia was in pain. Development of observational pain tools and training in their use should consider the preexisting assumptions that nurses use to infer pain as well as their potential bias.

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