Digital decoding of the multidimensional pain experience in people living with dementia

BACKGROUND: Understanding how pain manifests in people living with dementia can facilitate pain management but evidence from large real-world studies is limited. Through digitally compiled large number of pain assessments, we explore how behavioural indicators manifest across all widely used domains of pain assessment. METHODS: This is a population based observational study with data from aged care homes across Australia, New Zealand and the United Kingdom. Pain assessments were conducted over a period of 5.3 years in 89 230 residents living with advanced dementia. The primary outcome was to determine pain indicator occurrence across pain levels and explore their predictive contributions on pain intensity. This included pain outcomes related to assessment at rest and movement analysed using binary logistic generalized estimating equation. RESULTS: A total of 2 125 022 pain assessments were conducted on 89 230 residents, and just over half (i.e. 52.8%) exhibited indicators consistent with the presence of pain. Indicators suggestive of higher pain intensity were more likely when assessed post-movement (OR = 2.5, CI 2.4-2.7, χ2 = 1129.6, P < .001). All pain indicators across various assessment domains were predictive of pain, confirming the value of a multidimensional pain assessment. Higher pain levels were manifested through horizontal mouth stretch (OR = 4.6), noisy sounds (OR = 9.0), restlessness (OR = 18.7), distress (OR = 27.9) resisting care (OR = 13.5) and rapid breathing (OR = 20.1). DISCUSSION: Our findings suggest that pain indicators occur across multiple pain assessment domains and provide insights into how pain manifests across different pain levels. We also confirm the importance of movement-based pain assessment during which pain levels are higher compared to rest.