1. Template produced at the Graphics Support Workshop, Media Centre Background There is no evidence to suggest that people with dementia experience any less pain than those who are cognitively intact. However, as a person’s dementia progresses, verbal skills often become compromised, resulting in a lack of ability to self- report. The majority of literature focuses on assessing pain, but little research has focused on pain identification. In addition, family carers have seldom been involved in dementia research. Overall aim To explore how nurses, physiotherapists, experienced dementia workers and family carers identify pain in people with dementia. This research comprises two studies, of which study two (quantitative) was informed by the findings of study one (qualitative). STUDY ONE Methods The main method of data collection was focus groups, which involved purposive sampling of nurses and physiotherapists from two NHS Trusts in North West England, postgraduate dementia care students from a University in Northern England and informal carers from the Alzheimer’s Society. The focus group data were transcribed verbatim and analysed using framework analysis (Richie and Spencer, 1994). Results Six focus groups were undertaken comprising: Nurses n=10; Physiotherapists n=18; Experienced dementia workers n=3; Informal carers n=9. The focus group data generated two main concepts and four themes ( figure 1.1 ). Exploring pain identification in people with dementia and limited verbal skills Caroline Swarbrick, Professor Chris Todd and Dr Cliff Richardson School of Nursing, Midwifery and Social Work. The University of Manchester The most common behaviours considered indicative of pain as reported by family carers comprised: ● ‘Grimace’ ● ‘Rubbing’ ● ‘Loud sounds’ ● ‘Irritable’ ● ‘Change in skin colour’ - When analysed by gender of the person with dementia (using  2 ), family carers indicated that males with dementia displayed ‘guarding’ and ‘aggression’ statistically significantly more than females with dementia (p<0.05). - When analysed by age of the person with dementia (using independent t-tests), family carers suggested that younger people with dementia displayed ‘aggression’ and ‘using other limbs’ statistically significantly more than older people with dementia (p<0.05). Discussion and conclusion The findings support the need for pain identification as a stage separate from and prior to that of pain assessment. ‘Knowing the person’ was considered important in identifying pain, highlighting the ‘importance of family carer involvement’. According to participants, ‘changes in behaviour’ (rather than the behaviour per se) were central to identifying pain in people with dementia, using the behaviours reported by family carers in study two as guidance rather than as a prescribed list of behaviours. Differences in pain expression between males and females with dementia and between younger and older people with dementia are highlighted as areas in need of future research. References Richie J. & Spencer L. (1994) Qualitative data analysis for applied policy research. In Bryman A. & Burgess R. G. (eds) Analyzing qualitative data. London, Routledge. Key: 5. Roles & approaches 1a. Interpretations 1b. Changes in behaviour 4. Pain identification 4.1 Behaviours 4.2 Assessment and tools 5.1 Criticisms 2. Knowledge and understanding 2.1 Perceptual differences of pain 2.2 The effects of dementia on communication 3.1 Informal carers’ contribution 3.2 Baseline data 3. Background of the person with dementia Core concepts Themes Sub-themes Figure 1.1 Relationships between concepts and themes. STUDY TWO Methods Family carers from eight branches of the Alzheimer’s Society were asked to complete a questionnaire focusing on the behaviours identified (in study one) as indicating pain in people with dementia. Results Eighty-four questionnaires were available for analysis ( figure 1.2 ). Figure 1.2 Responses. 88 with pain / not sure With pain n=77 / Not sure n=11 145 questionnaires returned 283 questionnaires distributed to attendees and carers of those attending the day centres 57 without pain / blank Without pain n=46 / Blank n=11 Not included in final analysis n=61 Questionnaires for final analysis n=844 questionnaires completed by non- family carers Total of 356 family carers identified as potential attendees of the carers groups 138 questionnaires not returned