Do Informal Caregivers Consider Nonverbal Behavior When They Assess Pain in People With Severe Dementia?

Abstract

The purpose of this study was to determine the types of nonverbal cues that informal family caregivers use to evaluate pain in loved ones with dementia. Moreover, we sought to determine the extent to which caregiver characteristics such as mood, empathy, and sex are associated with caregiver ratings of patient pain. Long-term care home residents with dementia were filmed while at rest and while they were engaging in discomforting movements (eg, routine transfers). Informal caregivers (ie, family members) observed the videos of their loved ones and rated the amount of pain that the patients were expressing. Contrary to expectations, caregiver ratings of pain were not related to any specific pain behaviours, suggesting that nonverbal pain cues were either disregarded or not noticed by the caregivers. The total number of pain behaviors expressed by patients was related to caregiver ratings of pain intensity only among caregivers who spent relatively more time with the patient each week. Caregiver empathy, mood, sex or other demographic characteristics were not predictive of caregiver ratings. Instead, it appears that caregivers relied on context in making the pain determinations. Informal caregivers (ie, family members) of persons with dementia who reside in long-term care facilities do not generally take into account specific pain behaviors when evaluating pain in their loved ones. Interventions designed to help caregivers become more attentive to specific pain cues might be important to pursue.