Observing and treating pain in people living with dementia in long-term care facilities

Abstract

Objectives: Neuropathological changes in dementia compromise communicative abilities, causing pain to present atypically and making assessment challenging. Although pain is highly prevalent in people with dementia and can be managed pharmacologically and non-pharmacologically, comprehensive studies on pain assessment and management in this population remain scarce. This study aimed to explore how pain is observed, assessed, and managed in people living with dementia in long-term care facilities. Design Mixed-methods sequential explanatory design. Setting and participants: Medical staff, healthcare professionals, nursing staff, and managers employed in long-term care facilities, as well as informal caregivers of residents with dementia in these facilities, in the Netherlands. Methods: Between April 9 and July 1, 2024, participants completed a nationwide survey (N = 387) containing questions about pain observations and the use of non-pharmacological and pharmacological interventions. The number of questions varied from 4 (for the managers) to 15 (for informal caregivers), and additional in-depth interviews were conducted (N = 20). Quantitative data were analyzed descriptively using SPSS to calculate frequencies and distributions. The interview summaries were analyzed for recurring themes and illustrative quotes used to support survey findings. Results: Pain was most considered when medical and nursing staff observed non-verbal indicators such as behavioral changes, supported by physical examination and, in some cases, pain observation scales. Approximately half of respondents reported using observational pain scales in routine practice. Pain management relied predominantly on pharmacological treatment, primarily paracetamol, with less frequent and unsystematic use of non-pharmacological interventions such as distraction, exercise, and music therapy. Conclusion: Pain assessment and management for people with dementia in long-term care facilities remain predominantly pharmacological. The limited and inconsistent use of validated observational tools and non-pharmacological interventions highlights the need for systematic implementation in clinical practice and future research.