Background & Aims
Pain is a frequently reported symptom in older adults. Up to 80% of people living with dementia regularly experience pain (1). However, pain is often under-recognized and undertreated in this group (2), leading to reduced quality of life and increased healthcare costs (3). Despite the high prevalence of pain, there is substantial evidence that over 90% of healthcare professionals struggle to accurately assess pain in people living with dementia (4-5). Assessment challenges include the reduced capacity of people with dementia to communicate their pain, limited staff knowledge in identifying pain indicators, poor attitudes towards pain and dementia, and inadequate guidance on using pain assessment tools (6-7). To address these challenges, we aimed to co-design and test the feasibility of an online Staff Education Program to Enhance Pain Assessment in People Living with Dementia (SEE-PAIN).
Methods
First, we conducted a systematic review to understand the decision-making process regarding pain assessment for people living with dementia. Second, we co-designed the SEE-PAIN program with people living with dementia, families, and multidisciplinary healthcare professionals to explore the experiences and needs of pain assessment in people living with dementia. People living with mild dementia (n=6), families (n=7), and healthcare professionals (n=11, including general practitioners, allied health, and nurses) participated in semi-structured interviews between May and August 2023. Third, we developed the online SEE-PAIN program and will test feasibility with 60 healthcare professionals in dementia care. The program’s acceptability, satisfaction, feasibility, sustainability, and changes in participants’ knowledge, attitudes, and self?efficacy in pain assessment in people living with dementia will be assessed immediately before and after program completion and follow-up at 4 weeks.
Results
A systematic review identified 28 studies reporting pain assessment decision-making processes in dementia care. Pain assessment is a complex process with a degree of guesswork, involving multiple perspectives through sense-making, analytical, and intuitive approaches. Both healthcare professionals and families found it challenging to identify, assess, and manage pain in people living with dementia, largely due to the communication barriers in people living with dementia and lack of skill training. Findings highlighted limited training in pain and dementia and recommended professionals should be well-informed and actively engaged in the pain assessment process. We co-designed three modules based on the training needs: Module 1 – The Mechanism of Pain in Dementia; Module 2 – Recognising Pain in Dementia; and Module 3 – Pain Assessment in Dementia. The online SEE-PAIN program (www.see-pain.org) is currently undergoing feasibility testing, and the results will be available in May 2024.
Conclusions
Pain assessment in people living with dementia is a dynamic process underpinned by the collaborative involvement of people living with dementia, families, and healthcare professionals in the decision-making processes. However, healthcare professionals and families found it challenging to identify, recognize, and assess pain in people living with dementia, largely due to the communication barriers in this group and their lack of skill training. Healthcare professionals require formal training in pain assessment for individuals living with dementia. Therefore, the co-designed SEE-PAIN program addresses a critical health issue – under-recognized and undertreated pain in people living with dementia. This program aims to help health professionals identify and assess pain in people living with dementia and facilitate effective pain management.
References
1.Helvik, AS., Bergh, S. & Tevik, K. A systematic review of prevalence of pain in nursing home residents with dementia. BMC Geriatrics, 2023; 23, 641.
2.Achterberg W, Lautenbacher S, Husebo B, Erdal A, Herr K. Pain in dementia. Pain Reports, 2020;5(1): e803.
3.Guliani, H., Hadjistavropoulos, T., Jin, S., & Lix, L. M. Pain-related health care costs for long-term care residents. BMC Geriatrics, 2021; 21(1), 552.
4.Bullock L, Chew-Graham CA, Bedson J, Bartlam B, Campbell P. The challenge of pain identification, assessment, and management in people with dementia: a qualitative study. BJGP Open, 2020;4(2): bjgpopen20X101040.
5.Jennings, A. A., Linehan, M., & Foley, T. The knowledge and attitudes of general practitioners to the assessment and management of pain in people with dementia. BMC Family Practice, 2018; 19(1), 166-166.
6.Gerber, K., Willmott, L., White, B., Yates, P., Mitchell, G., Currow, D. C., & Piper, D. Barriers to adequate pain and symptom relief at the end of life: A qualitative study capturing nurses’ perspectives. Collegian, 2022; 29(1), 1-8.
7.Giménez-Llort, L., Bernal, M. L., Docking, R., Muntsant-Soria, A., Torres-Lista, V., Bulbena, A., & Schofield, P. A. Pain in older adults with dementia: A survey in Spain. Frontiers in Neurology, 2020; 11(1481).
Presenting Author
Lihui Pu
Poster Authors
Lihui Pu
PhD
Griffith Univversity
Lead Author
Topics
- Pain in Special Populations: Elderly