Author Identifier (ORCID)
Abstract
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.
Keywords
caregiver burden, caregiver score, dementia, neuropsychiatric symptoms, pain
Document Type
Journal Article
Date of Publication
1-1-2026
Article Number
1868192
E-ISSN
2673561X
Volume
7
Publication Title
Frontiers in Pain Research
Publisher
Frontiers
School
School of Medical and Health Sciences
Funding Information
The author(s) declared that financial support was received for this work and/or its publication. PainChek Ltd; PC was paid as an independent consultant for biostatistical analysis.
Creative Commons License
This work is licensed under a Creative Commons Attribution 4.0 License.
Recommended Citation
Hoti, K., Vahia, I., Chivers, P., & Hughes, J. (2026). Pain in people with dementia is a significant contributor to increased professional caregiver burden: Results of an observation study. Frontiers in Pain Research, 7, 1868192. https://doi.org/10.3389/fpain.2026.1868192