Pain management for people with dementia: a cross-setting systematic review and meta-ethnography

Background Pain management for people with dementia is challenging. There is limited understanding on the experiences of pain management from people with dementia, but also from those who support them. This study synthesised the qualitative evidence to explore the perspectives of people with dementia, their family, friends, carers and healthcare professionals to pain management. Methods A systematic literature review was undertaken of published and unpublished literature databases (to 01 November 2021). All qualitative research studies reporting the perspectives of people with dementia, their family, friends, carers and healthcare professionals to managing pain were included. Eligible studies were appraised using the Critical Appraisal Skills Programme (CASP) qualitative appraisal tool. A meta-ethnography analysis approach was adopted, with findings assessed against the GRADE-CERQual framework. Results Of the 3994 citations screened, 33 studies were eligible. Seven themes were identified from the data. There was moderate evidence from six studies indicating inequity of pain management for people with dementia. There was moderate evidence from 22 studies regarding anxieties on cascading pain information. There was moderate evidence from nine studies that familiarisation of the person with pain, their preferences, routines and behaviours were key factors to better pain management. Consistently, carers and healthcare professionals had a low opinion of the management of pain for people with dementia, with tensions over the ‘best’ treatment options to offer. This was associated with poor training and understanding on how pain ‘should’ be managed. Conclusion The findings highlight the challenges faced by people with dementia and pain, and those who support them. Improvements in education for people who support these individuals would be valuable across health and social care pathways. Supporting family members and relatives on pain experiences and treatment options could improve awareness to improve quality of life for people with dementia and pain and those who support them.


Studies
Overcoming misconceptions on pain, ageing and dementia required.

Burns 2015; Liu 2018; Martin 2005
There is limited use of evidence-based approaches to pain management.

Fry 2016; Corbett 2016; Whybrow 2018
There is an acceptance on a trial-and-error approach to pain management rather than a step-wise approach. Uncertain on key information i.e. not known about specific pain assessment tools or how to manage. Uncertain on whether pain should be managed differently for a Person with Dementia vs. Person Without Dementia.

Burns 2015
Perceived underestimation of benefit of nonpharmacological treatment from nurses.

Studies
Pain management can also manage aggressive symptoms.

Rationale
3 Describe the rationale for the review in the context of what is already known. Intro Para 1&3 Objectives 4 Provide an explicit statement of questions being addressed with reference to participants, interventions, comparisons, outcomes, and study design (PICOS).

METHODS
Protocol and registration 5 Indicate if a review protocol exists, if and where it can be accessed (e.g., Web address), and, if available, provide registration information including registration number.

Methods Para 1
Eligibility criteria 6 Specify study characteristics (e.g., PICOS, length of follow-up) and report characteristics (e.g., years considered, language, publication status) used as criteria for eligibility, giving rationale.

Methods; Eligibility Criteria
Information sources 7 Describe all information sources (e.g., databases with dates of coverage, contact with study authors to identify additional studies) in the search and date last searched.

Methods; Search Strategy
Search 8 Present full electronic search strategy for at least one database, including any limits used, such that it could be repeated.
Supplement Table 1 Study selection 9 State the process for selecting studies (i.e., screening, eligibility, included in systematic review, and, if applicable, included in the meta-analysis).

Methods; Eligibility Criteria
Data collection process 10 Describe method of data extraction from reports (e.g., piloted forms, independently, in duplicate) and any processes for obtaining and confirming data from investigators.

Methods; Data Extraction
Data items 11 List and define all variables for which data were sought (e.g., PICOS, funding sources) and any assumptions and simplifications made.

Methods; Data Extraction
Risk of bias in individual studies 12 Describe methods used for assessing risk of bias of individual studies (including specification of whether this was done at the study or outcome level), and how this information is to be used in any data synthesis. Additional analyses 16 Describe methods of additional analyses (e.g., sensitivity or subgroup analyses, meta-regression), if done, indicating which were pre-specified.

RESULTS
Study selection 17 Give numbers of studies screened, assessed for eligibility, and included in the review, with reasons for exclusions at each stage, ideally with a flow diagram.

Search
Results & Figure 1 Study characteristics 18 For each study, present characteristics for which data were extracted (e.g., study size, PICOS, follow-up period) and provide the citations.
Results; Characteristics of Studies &

DISCUSSION
Summary of evidence 24 Summarize the main findings including the strength of evidence for each main outcome; consider their relevance to key groups (e.g., healthcare providers, users, and policy makers).

Discussion
Para 1 Limitations 25 Discuss limitations at study and outcome level (e.g., risk of bias), and at review-level (e.g., incomplete retrieval of identified research, reporting bias). For more information, visit: www.prisma-statement.org.