Originally launched in 2003, Project ECHO© (Extension for Community Healthcare Outcomes) is a distance health education model which uses teleconferencing technology to connect HCPs across multiple setting and disciplines in real time clinics. Learning by experience, sharing disciplinary knowledge, and opportunities to co-manage complex patient cases were seen to be key elements of a highly dynamic and relevant form of clinical training capable of cultivating sustained practice change.
All respondents expressed a strong preference for case-based learning led by a health professional with clinical experience of the patient population. The findings from the qualitative interview phase of this research programme have been presented in a number of peer-reviewed articles, and indicated the need for training and ongoing professional development for these HCPs (physicians, nurses and healthcare assistants) across specialties, disciplines and care settings. It was in this context that a programme of research into assessing and managing pain in people with advanced dementia nearing the end of life was undertaken to determine the issues in assessment and management of pain in this patient population, considering the perspectives of healthcare professionals (HCPs: physicians, nurses and healthcare assistants practising in primary, secondary and hospice care) and carers in order to develop a model of practice to optimise detection and treatment of pain as patients with dementia approach the end of life. Pain recognition and assessment in this patient population is widely recognised to be challenging extensive cognitive decline in the advanced and terminal stages of dementia often significantly impair or remove the possibility of patient self-report, increasing the risk of under-assessment and under-treatment of pain. Research evidence suggests that people who are dying with dementia are liable to experience pain at the end of life studies indicate that between 20 and 50% of people with dementia report some form of pain in the course of their illness progression, with higher proportions affected in the more advanced stages of the condition and towards the end of life.
The advanced stages of dementia are characterised by immobility, severe cognitive deficit, loss of communication skills, and physical frailty, and are often accompanied by distressing and/or painful symptoms including: respiratory infection, delirium, anorexia, dysphagia, incontinence and sleep disturbance.
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