Exploring the Lived Experience of Dementia Friends Champions: Poetic Representation

1.1 Background The Alzheimer’s Society UK launched the Dementia Friends initiative in 2013 aiming to change people’s perceptions of dementia and turn understanding into action to promote social inclusion and dementia friendly communities. Dementia friends champions are volunteers delivering information sessions covering five key messages about dementia, through activities and discussion, and provide an opportunity to commit to a dementia-friendly action. There is limited research into the experience of dementia friends champions. 1.2 Aim To add to the current body of knowledge, the qualitative phenomenological research into the lived experiences of dementia friends champions was undertaken with a view to influencing and informing the existing and future provision. 1.3 Method A qualitative phenomenological methodology (interpretative phenomenological analysis) was implemented from a social constructionist epistemology. Semi structured interviews were undertaken with eleven dementia friends champions, from London and the South East, to explore their experiences and insights from undertaking the role. The interviews were transcribed and analysed, and four themes were developed. Poetry was produced by the researcher from the transcripts and insights from the research with the aim of disseminating to a broader audience in an engaging and accessible way. 1.4 Findings Four themes were developed from the research included being a dementia friends champion, knowledge and understanding in communities, experiences and insights and dementia friendly communities. Champions felt proud to be volunteers and experienced a sense of belonging to a bigger movement. They used a wide range of skills and knowledge in the role that did not reflect the training they received. They experienced limited knowledge of dementia from people attending sessions, but the feedback received showed changes in attitudes, understanding and action. They encountered a fear of a dementia, distress and unmet needs and the role was emotionally demanding. Some champions were challenged by the key message that you can live well with dementia which did not reflect their own experiences or the people they met. Hearing from people living with dementia had a positive impact on champions and people attending dementia friends sessions. The need to reach younger people and future generations was highlighted to change the dementia landscape. They gained new understandings and were changed by their experiences 1.5 Discussion and conclusion The research provided new knowledge into the experiences of champions from an individual and community perspective, including unmet needs. The research is presented in an academic format and research poetry to reach a broader audience, promote discussion, reflection, and understanding of dementia and the experience of being a champion.