Management of pain in people with dementia living in care homes: Programme and intervention development
Award Number
RP-DG-1212-10004Programme
Programme Grants for Applied ResearchStatus / Stage
CompletedDates
21 October 2014 -20 January 2016
Duration (calculated)
01 years 02 monthsFunder(s)
NIHRFunding Amount
£64,897.00Funder/Grant study page
NIHRContracted Centre
Guy's and St Thomas' NHS Foundation TrustContracted Centre Webpage
Principal Investigator
Professor Anne CorbettPI Contact
A.M.J.Corbett@exeter.ac.ukPI ORCID
0000-0003-2015-0316WHO Catergories
Models across the continuum of careDisease Type
Dementia (Unspecified)CPEC Review Info
| Reference ID | 96 |
|---|---|
| Researcher | Reside Team |
| Published | 12/06/2023 |
Data
| Award Number | RP-DG-1212-10004 |
|---|---|
| Status / Stage | Completed |
| Start Date | 20141021 |
| End Date | 20160120 |
| Duration (calculated) | 01 years 02 months |
| Funder/Grant study page | NIHR |
| Contracted Centre | Guy's and St Thomas' NHS Foundation Trust |
| Contracted Centre Webpage | |
| Funding Amount | £64,897.00 |
Abstract
The Programme Development Grant (PDG) will support key exploratory and preparatory work leading up to an application for the proposed research programme. This will involve six workstreams (WS). WS1: Consultation with stakeholder groups Focus groups will be held with key stakeholder groups to identify the main elements and challenges in identifying and managing pain in people with dementia living in care homes. The following groups will be convened: Care home staff consultation: Two half-day focus groups will be held with care home staff to discuss how they conceptualise pain and what they believe to be the main sources of pain for residents. Their experience with individual residents will be sought to identify the language and signals they recognise to be associated with pain. Participants will be asked to reflect on the challenges involved in assessing and treating pain in people with dementia and to identify strategies and sources of support that they have found to assist them in this process. The groups will discuss different available pain assessment methods, including a new tool developed in an ongoing EU-COST initiative. They will particularly focus on which tools would be feasible and workable in a care home. The concept of a pain pathway will be introduced and their feedback regarding design and practical considerations will be recorded. These sessions will be chaired by a senior manager from a care provider. Health professional consultation: Two two-hour focus groups will be convened with General Practitioners. These sessions will consider the role of the health professional in identification and treatment of pain and how they interact with care staff to achieve this. Key themes will include feasibility of non-pharmacological interventions and potential issues with fidelity regarding following stepped protocols involving combinations of pharmacological and non-drug approaches. The groups will also be asked for ideas around the design and structure of a pain pathway and how its use could be optimised. These sessions will be chaired by Professor Louise Robinson, Dementia Champion for the Royal College of GPs. Lay representative consultation: Two half-day focus groups will be convened with family carers of people with dementia who are living in a care homes. This will be supported by Alzheimer s Society UK and will involve a representative from the British Pain Society. These sessions will focus on the needs of the person with dementia, highlighting important elements of basic care, person-centred principles and individual considerations that they feel should be included in a pathway. The groups will discuss the potential for individualisation of pain assessment and treatment, including what language and signs people associate with pain in their relatives and how those could be incorporated into a pathway. The groups will also discuss the role of family and next of kin in decisions around treatment and the practicalities of this. These sessions will be chaired by the lead applicant and lay co-applicant. WS2: Expert consultation with specialist panel A specialist panel will be convened consisting of clinicians, academics and patient representatives with expertise in assessment and treatment of pain, with a focus on older people and dementia. The panel will meet for a full day meeting which will focus on the following questions: What are the unique challenges and needs involved in assessing and treating pain in dementia? This discussion will consider the likely underlying causes of pain that may be unique or more common in people with dementia, the types of pain these will cause, and the complexities these conditions and needs will raise regarding assessment and treatment. A key issue is expected to be the frequency of neuropathic pain and the different treatment that will be required to address it. What is the most effective way to assess pain in people with dementia? This discussion will consider the exist
Plain English Summary
There are 800,000 people with dementia in the UK, and this is expected to rise to over 1 million by 2025. The treatment and care of people with dementia costs the UK £23 billion each year and places significant burden on healthcare services. Dementia is a devastating and progressive condition, meaning that all people with dementia will decline over time. Treatment is challenging for doctors, particularly in the later stage when people lose the ability to communicate. Research has shown that this results in people not receiving the treatment and care they need. A common example of this is when people are in pain. Around 80% of people with dementia in care homes experience regular pain, caused by conditions like arthritis or pressure sores from extended time in bed. Besides causing great discomfort and distress, untreated pain results in difficulties with movement and is a major cause of behavioural symptoms such as agitation. Although pathways exist for assessment and treatment of pain in other individuals, there is currently no guidance for use with people with dementia. It is essential to determine the best way to assess and treat pain in this important patient group, and develop an easy-to-use pathway to guide health and care professionals. Any pathway must take into consideration the different causes and types of pain experienced by people with dementia, and be tailored accordingly. Our proposed research aims to develop a pain management pathway for people with dementia in care homes. The pathway will be fully optimised and tested in a clinical trial in the future research programme, followed by extensive work to implement it in care homes in the UK. The Programme Development Grant will carry out important preparatory work including extensive consultation with care home staff, GPs and carers to identify key elements needed in the pathway. A specialist panel will review the evidence to decide on the most appropriate and effective methods of assessing and treating pain, and consider how existing pathways would need to be adapted to suit the challenges of caring for people with dementia. A preliminary pathway will be tested in a small feasibility pilot study in three care homes. The work will also develop a new carer-reported outcome measure (CROM) since there is currently no easy and reliable way of monitoring pain in people with dementia. The work will be overseen by our multidisciplinary research team which combines extensive experience and expertise in dementia and pain research, clinical trials in care homes, data analysis, development and implementation of care pathways and partnerships with key organisations. We believe this research represents a critical step towards improving the treatment and care received by people with dementia in care homes across the UK.
Aims
Our proposed research aims to develop a pain management pathway for people with dementia in care homes. The pathway will be fully optimised and tested in a clinical trial in the future research programme, followed by extensive work to implement it in care homes in the UK. The Programme Development Grant will carry out important preparatory work including extensive consultation with care home staff, GPs and carers to identify key elements needed in the pathway. A specialist panel will review the evidence to decide on the most appropriate and effective methods of assessing and treating pain, and consider how existing pathways would need to be adapted to suit the challenges of caring for people with dementia. A preliminary pathway will be tested in a small feasibility pilot study in three care homes. The work will also develop a new carer-reported outcome measure (CROM) since there is currently no easy and reliable way of monitoring pain in people with dementia. The work will be overseen by our multidisciplinary research team which combines extensive experience and expertise in dementia and pain research, clinical trials in care homes, data analysis, development and implementation of care pathways and partnerships with key organisations.