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Pain is under-assessed and under-treated among people living with dementia. This study aims to explore the perspectives of people with dementia, family carers, and healthcare professionals regarding their experiences and needs for pain assessment and management.
A qualitative descriptive approach.
Between May and August 2023, people with early-stage dementia (n = 6), their family carers (n = 7), and healthcare professionals (n = 10) from four Australian states participated in semi-structured interviews, online or by telephone. Most of the participants were female. Work experience of healthcare professionals and caring experience of carers ranged from 3–40 and 2–8 years, respectively. Following transcription, the data were analysed using inductive thematic analysis.
Four main themes and 10 subthemes were identified. Main themes were (1) communications to identify pain in people with dementia, (2) pain assessment in people with dementia, (3) pain management strategies, and (4) training in pain and dementia care. Healthcare professionals and family carers reported challenges in pain identification. People with dementia also mentioned their pain being unrecognised by carers. Facilitators included familiarity and communication with people with dementia and family carers. Non-verbal cues and unusual behaviours were commonly used to identify pain, and a personalised pain assessment approach was highlighted. Non-pharmacological strategies were used as the first-line therapy to manage pain. However, a lack of knowledge and training in pain and dementia care indicated the need for a training program (e.g., a self-paced online short course).
Pain assessment and management in people with dementia is challenging, primarily due to communication barriers and a lack of skill training. Formal pain assessment and management training and efficient, easy-to-use pain assessment tools are needed to address this.
Limited communication capacity in people with dementia and lack of training in carers are key challenges regarding pain assessment and management in people with dementia. Improved training in communication, pain assessment, and management skills may help to address these challenges.
This study addressed a lack of knowledge and skills for healthcare professionals and family carers in effective pain assessment and management in people with dementia. Collaborative communication among different stakeholders and skills training may overcome the challenges and barriers.
COREQ guidelines were followed when reporting this study.
Healthcare professionals, people with dementia, and family carers contributed to the design of interview questions and data collection.
To explore registered nurses' beliefs regarding pain assessment in people living with dementia.
A descriptive exploratory qualitative study informed by the Theory of Planned Behaviour.
Online semi-structured in-depth interviews were conducted from January to April 2023 with a purposive sample of 15 registered nurses caring for people with dementia. Following transcription, data were analysed using direct content analysis.
Registered nurses believe pain assessment improves the well-being of people with dementia and informs and evaluates practice. However, there is a possibility of misdiagnosing pain as agitation or behavioural problems, leading to inaccurate pain management. Interpersonal factors, such as registered nurses' knowledge and experience, beliefs and motivation to improve care provision, were the primary facilitators of pain assessment. Physical and behavioural dimensions of the pain of the dementia syndrome were the most reported barriers to pain assessment. Registered nurses reported that multidisciplinary team members expect them to do pain assessments. Most did not experience disapproval when performing pain assessments.
Registered nurses hold beliefs about pain assessment benefits, consequences, enablers, barriers, approvals and disapprovals regarding dementia. The findings could inform interventions to enhance pain assessment practices.
Policymakers should provide education opportunities for registered nurses to improve their knowledge, skills and beliefs about pain assessment in dementia. Future research should develop and implement multidisciplinary, multifaceted pain assessment protocols to enhance the accuracy of pain assessment practices.
Pain is underassessed in dementia, and this could stem from registered nurses' beliefs about pain assessment in dementia. The findings could inform interventions to enhance pain assessment beliefs and practices.
This study adhered to the COREQ criteria.
Registered nurses caring for people living with dementia participated as interview respondents.
To evaluate registered nurses' beliefs and related factors regarding pain assessment in people living with dementia.
A descriptive cross-sectional survey was conducted between July 2022 and April 2023.
An online survey comprised of demographics, knowledge scale, and beliefs scale relating to pain assessment in dementia was distributed to registered nurses (RNs) caring for people living with dementia in Australia.
RNs (N = 131) completed the survey. Most respondents were females (87.0%) and self-identified as Caucasian (60.3%). The mean beliefs score was 72.60 (±6.39) out of a maximum possible score of 95. RNs' beliefs about pain assessment varied based on their education, dementia pain assessment knowledge, nursing experience, and ethnicity. Hierarchical multiple regression analysis revealed factors significantly related to the beliefs score (i.e. education and dementia pain assessment knowledge).
The relationship between education and knowledge, and the beliefs score indicates the potential to improve RNs' knowledge and overcome their erroneous beliefs about pain assessment in dementia.
Education and training in assessing pain in people living with dementia should be tailored to overcome RNs' misconceived beliefs. These programmes should be integrated into continuous learning programmes.
Some RNs' beliefs about pain assessment in dementia were not evidence-based, and knowledge and educational status were the strongest factors related to RNs' beliefs. RNs' erroneous beliefs about pain assessment in dementia need to be addressed to improve pain assessment and management. Researchers should explore the potential of educational interventions to overcome RNs' misconceived beliefs about pain assessment in dementia.
This study was reported adhering to the Strengthening the Reporting of Observational Studies in Epidemiology checklist.
RNs caring for people living with dementia participated as survey respondents. Additionally, RNs were involved in the pre-testing of the study's survey instrument.
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