Pain Assessment and Management in Dementia Care: Qualitative Perspectives of People With Dementia, Their Families, and Healthcare Professionals.

Aim: 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.

Design: A qualitative descriptive approach.

Methods: 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.

Results: 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).

Conclusions: 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.

Implications for the profession and/or patient care: 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.

Impact: 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.

Reporting method: COREQ guidelines were followed when reporting this study.

Patient or public contribution: Healthcare professionals, people with dementia, and family carers contributed to the design of interview questions and data collection.