Abstract

BackgroundPainful conditions are common in older adults, including people with dementia. The symptoms associated with dementia (for example, diminished language capacity, memory impairment, and behavioural changes), however, may lead to the suboptimal identification, assessment, and management of pain. Research has yet to qualitatively explore pain management for community-dwelling people with dementia.AimTo explore pain identification, assessment, and management for community-dwelling people with dementia.Design & settingA qualitative study was undertaken, set in England.MethodSemi-structured interviews took place with people with dementia, family caregivers, GPs, and old-age psychiatrists. Data were analysed thematically.ResultsInterviews were conducted with eight people with dementia, nine family caregivers, nine GPs, and five old-age psychiatrists. Three themes were identified that related to pain identification and assessment: gathering information to identify pain; the importance of knowing the person; and the use of pain assessment tools. A further three themes were identified that related to pain management: non-drug strategies; concerns related to analgesic medications; and responsibility of the caregiver to manage pain.ConclusionIdentifying and assessing the pain experienced by people with dementia was challenging. Most people with dementia, family caregivers, and healthcare professionals supported non-drug strategies to manage pain. The minimal concerns associated with non-drug strategies contrasted the multifactorial concerns associated with analgesic treatment for people with dementia. Given the complexity of pain identification, assessment, and management, primary care should work together with family caregivers and community services, with case finding for pain being considered in all assessment and management plans.

Highlights

  • Dementia is a broad term for a number of conditions with a common set of symptoms that may include memory loss and difficulties with thinking, problem-s­ olving, or language.[1]

  • Identifying and assessing the pain experienced by people with dementia was challenging

  • Given the complexity of pain identification, assessment, and management, primary care should work together with family caregivers and community services, with case finding for pain being considered in all assessment and management plans

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Summary

Introduction

Dementia is a broad term for a number of conditions with a common set of symptoms that may include memory loss and difficulties with thinking, problem-s­ olving, or language.[1] Seven per cent of people aged >65 years have dementia,[2] with the number of people with dementia forecast to rise to >1 million by 2025 in the UK.[2] Estimates suggest that 50% of people with dementia experience pain, which is in accord with rates in aged people without dementia.[3,4] Yet pain remains inadequately identified and assessed,[3,4] and people with dementia receive less pain management than older adults without dementia.[5,6] While some explanation for this discrepancy may be owing to altered pain experience associated with neurodegeneration, the evidence far is limited and inconsistent in this area.[7,8,9,10]. The symptoms associated with dementia (for example, diminished language capacity, memory impairment, and behavioural changes), may lead to the suboptimal identification, assessment, and management of pain. Research has yet to qualitatively explore pain management for community-­ dwelling people with dementia

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