Pain in People with Dementia (PIP-D)
Research type
Research Study
Full title
An investigation into the views and experiences of pain in community-dwelling people with dementia
IRAS ID
230583
Contact name
Laurna Bullock
Contact email
Sponsor organisation
Keele University
Duration of Study in the UK
1 years, 11 months, 26 days
Research summary
Pain conditions, like musculoskeletal pain, are increasingly common as we age, and this is equally true for those who also have dementia. Research shows that just under half of people with dementia report “normal” everyday pain that affects their everyday life. However, as the dementia disease progresses it may be more difficult for the person to communicate about their pain. As a result, pain in people with dementia may be incorrectly assessed and treated.
Most research in this area (pain in dementia) is focused on nursing home, end-of-life, and hospital settings where it is found that pain is often not recognised/under treated, and as a consequence can impact on dementia symptoms and general health, but where recognised and treated correctly, can lead to improved outcomes for those with dementia. However to date very little research has been carried out in community settings, this is despite the fact that most people with dementia live at home, and are mainly treated by their GP. Qualitative evidence is needed to produce an in depth exploration of the views of pain assessment and management in community-dwelling people with dementia. Such research is essential to provide context to, and elaborate on quantitative work in the area.
This study aims to understand the views of pain assessment and management from three key parties; the person with dementia, informal caregivers of those with dementia, and healthcare professionals. This research will be the first to qualitatively explore pain for community-dwelling people with dementia, and will allow people that are affected by dementia “a voice” on a subject that directly affects their lives. In addition, interviews with healthcare professionals will allow an exploration into a particularly challenging aspect of their role; recognising, assessing, and managing pain in people with dementia with the aim to inform professional practice.Summary of results
Background
Dementia and pain are common in older adults. Symptoms of dementia such as communication difficulties and memory loss may complicate how pain is identified, assessed and managed. Many people with dementia live in the community, living alone or with relatives, receiving care from their general practitioner (GP). This interview study aimed to investigate pain for people with dementia that live in the community.
Methods
Qualitative semi-structured interviews were conducted with people with dementia, family caregivers, GPs, and old age psychiatrists.
People with dementia and family caregivers were recruited using Join Dementia Research (JDR). JDR is a National Institute of Health and Care Research (NIHR) initiative that allows people to register their interest in taking part in dementia research using an online self- registration service. GPs and psychiatrists were recruited using existing networks of the study team. Data were analysed thematically.
Findings
Interviews were completed with eight people with dementia, nine family caregivers, nine GPs, and five old age psychiatrists. All interviews with people with dementia and caregivers were completed face-to-face. Interviews with GPs and psychiatrists were face-to-face or by telephone.
Identifying and assessing the pain experienced by people with dementia was challenging. The family member was helpful to understand if the person with dementia was experiencing pain, as the person that ‘knows them best’. Family members and GPs noted the importance of observing behavioural changes in the person with dementia, especially if the person could not verbally communicate if they were in pain.
Most people with dementia, family caregivers, and healthcare professionals supported non-drug strategies to manage pain because of low concerns about their use. In contrast, many voiced concerns with pain relief medicines for people with dementia because of the chance of side effects (confusion, constipation, etc). Family members were often responsible to manage the person with dementia’s pain.
Conclusion
Findings demonstrate the complexity of pain identification, assessment, and management. GPs should work together with family caregivers and community services to ensure people with dementia receive adequate care for their pain.REC name
London - Bromley Research Ethics Committee
REC reference
17/LO/1646
Date of REC Opinion
31 Oct 2017
REC opinion
Further Information Favourable Opinion