Pain in community-dwelling people with dementia: a mixed methods study

Abstract

Introduction Dementia and pain are common in older adults. Clinical features of dementia such as communication difficulties may complicate the identification, assessment, and management of pain. This thesis therefore aimed to investigate pain identification, assessment, and management for community-dwelling people with dementia. Methods
A systematic review was conducted to describe and synthesise existing evidence on pain assessment and pain treatment for community-dwelling people with dementia. The review then informed on a convergent mixed methods strategy; using quantitative and qualitative methods. Quantitative methods utilised the Clinical Practice Research Datalink (a UK wide database of primary care health records) to examine the incidence and prevalence of musculoskeletal consultations and analgesic prescriptions for people with dementia. Qualitative semi-structured interviews were conducted with people with dementia (n=8), family caregivers (n=9), general practitioners (n=9), and old age psychiatrists (n=5) to explore their perspectives of pain identification, assessment, and management for community-dwelling people with dementia.
Results
The systematic review identified 32 studies and highlighted a dearth of high quality evidence in community settings.
With regards to pain identification and assessment, quantitative findings show that people with dementia had consistently lower incidence and prevalence of musculoskeletal consultations than older adults. Qualitative findings highlighted the unique challenges of pain identification and assessment; including the complexity of untangling the self-reported pain, and the importance of observing behavioural, psychological, and physical changes. Participants also reflected upon the importance of familiarity and the use of pain assessment tools to identify and assess pain.
Quantitative findings exploring pain management show that people with dementia had consistently lower prevalence of analgesic prescription compared to older adults, with the discrepancy between people with and without dementia increasing over time. Qualitative findings revealed many potential explanations for this discrepancy, with concerns relating to side effects, illness burden, and treatment burden. Alternatively, many participants supported the use of non-drug strategies to manage pain. Regardless of the pain management strategy, family caregivers were often responsible to manage pain in the community.
Conclusion
This thesis provides a novel and in-depth investigation of pain identification, assessment, and management for community-dwelling people with dementia by integrating quantitative and qualitative data. Implications for practice, policy, and future research are described.