Aim: To investigate the association between pain score and intensities, presence of selected responsive behaviours, and caregiver burden.
Method: A comprehensive review of the literature revealed 11 responsive behaviours associated with caregiver burden included within the 42 pain indicators of the PainChek® pain scale, namely: aggressiveness, inappropriate behaviour, distressed, verbally offensive, confusion, restlessness, pacing and wandering, crying, screaming, altered sleep and resisting care. A caregiver burden score was calculated by summing the indicators present (range: 0-11). Mixed models were used to evaluate the relationships between pain score and pain level (high/low) and the caregiver burden score.
Results: A total of 2,125,022 PainChek® assessments completed on 89,230 residents (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<.001) for all caregiver burden indicators except pacing and wandering (p=.494). For example, being distressed was associated with the highest risk (OR=12.0) and being confused (OR=1.6) the lowest risk of high pain. 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 responsive behaviours can contribute to caregiver burden and are exacerbated by higher pain levels. This research demonstrated the importance of effectively managing pain to reduce distress of people living with dementia and those who care for them.