The challenge of pain identification, assessment, and management in people with dementia: a qualitative study

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.

Care home residents’ quality of life and its association with CQC ratings and workforce issues: the MiCareHQ mixed-methods study

“…In the focus groups, some staff suggested that the key to understanding behavioural signs is knowing the resident, a point reinforced in work looking at the challenges of identifying pain in people living with dementia. 54 This point emphasises the importance of supplementing observational data with insights from those who know the resident when making ratings. In other words, it supports the use of a multimethods approach to understanding and measuring the quality of life of people who may not be able to easily share their experiences directly.…”

“…18 The characteristics of the group of conditions classified as dementia mean that the ability to communicate experience may be limited, particularly for those living with more severe dementia, and, thus, either research or diagnostic methods that rely on this may not be particularly appropriate for this group. 46,[50][51][52][53][54] It is not, however, just the ability to communicate clearly that is required for accurate self-report. The resident must understand the request, be able to recall pain eventsoften in a given time frameand interpret that internal experience with reference to an external framework.…”

Psychometric properties of pain measurements for people living with dementia: a COSMIN systematic review

“…The literature highlights the challenges of assessing pain with people living with dementia [ 3 , 4 , 67 ]. Challenges have included insufficient time to use measurement tools [ 68 , 69 ], user’s uncertainty over the reliability of these [ 70 ], access to physically finding and using the measurement tools [ 71 ], and perceived superiority of observational methods of behaviors and physical manifestations of pain [ 70 ].…”

Family Involvement in Pain Management for People Living With Dementia: An Integrative Review

“…• Family interviews at admission could be invaluable in helping staff with pain detection and can direct a pain management plan for cognitively impaired residents. • Families are responsible for initiating non-drug treatments and analgesic use for people with dementia, monitoring and providing feedback information (Bullock et al, 2020) • Family members were identified as key players within the pain management communication network that requires close working between family and care staff (Corbett et al, 2016;Lundin & Godskesen, 2021) • Family caregivers were responsible for the day-to-day identification, assessment, monitoring, and subsequent management of pain (Lichtner et al, 2016) • Caregiver roles -family caregivers, assumed in pain-related consultations: historians, interpreters, and advocates for their care recipient (Tarter et al, 2016) 1.2 Challenges of undertaking family roles…”

“…• Psychosocial support, spiritual support (e.g., touch, massage) (Buffum & Haberfelde, 2007) • Non-drug strategies provide warmth and comfortable (wheat bags, hot water bottles), massage and distraction techniques (Bullock et al, 2020) • Re-positioning (Lichtner et al, 2016) • Rest, relaxation, music and massage, social and recreational activities, exercise, distraction (Martin et al, 2005) • Lying down in a quiet room, relaxation, physical therapy, and exercise. "face is more relaxed, moves better, more talkative and would sleep better."…”