Pain in people with dementia is a significant contributor to increased professional caregiver burden: results of an observation study.

AIM: To investigate the association between the presence of neuropsychological symptoms, professional caregiver burden and pain intensity. METHODS: Eleven neuropsychiatric symptoms reportedly associated with caregiver burden which are included within the PainChek® pain assessment tool were identified: aggressiveness, inappropriate behavior, distressed, verbally offensive, confusion, restlessness, pacing and wandering, crying, screaming, altered sleep and resisting care. A caregiver burden score based on binary scoring of the presence of these indicators was calculated (summative score range from 0 to 11). Generalized estimating equations were used to evaluate the relationships between (1) pain score and sum of caregiver indicators present and (2) pain (high/low) and caregiver burden indicator presence. RESULTS: The results of 2,125,022 PainChek® assessments completed on 89,230 residents (Average age 84.8 ± 7.7 years, females 62.2%) were evaluated. The binary pain model reported a significant increased risk of high (i.e., moderate or severe) pain (p < 0.001) for all caregiver burden indicators except pacing and wandering (p = 0.494). Being distressed was associated with the highest risk (OR = 12.0) of high pain, followed by altered sleep (OR = 6.0). Age (p = 0.004) and sex (p < 0.001) were both significant confounders, with high pain less likely with increasing age and if a patient was female. CONCLUSIONS: Pain associated neuropsychiatric symptoms can contribute to professional caregiver burden and are exacerbated by high pain, emphasizing the need to minimize pain in people living with dementia.