Exploring how the dynamics of story support people with dementia to give voice to their expenses and raise awareness of what it means to live with dementia

Description

Introduction: There is a growing need to include people with dementia in research so that they can share their experiences of what it means to live with dementia. This can help to raise awareness and improve understanding of dementia. Finding ways to capture the stories of people with dementia is important to make sure they are done in an inclusive and collaborative way. This presentation explores the dynamics of story to understand what constitutes story in research and how participants use this method to express themselves.
Method: A multi-method approach used photo-elicitation, poetry and storytelling techniques with people with dementia who undertake lifelong learning at a school in Denmark. The project aimed to understand their experiences of attending this service through these creative methods. Participants (n=10) took their own photographs of the school and of their home lives and these were discussed over four weekly sessions. Participants created a poem and storyboard about being at the school and told stories about their home life and what it meant to live with dementia.
Results: The findings show how the participants were able to use humour, body language and gesture, narrative scaffolding and listening techniques to share their stories and make sense of their world. The non-linear nature of stories and how these weave through conversations was also reported, showing how dementia can affect memory and language. The ways in which the participants interacted with each other was also observed, often showing patience when words were lost or stories repeated. The findings also explore how people with dementia can disengage from sharing their stories if the wrong approach is used, such as how questions are asked or if criticism is expressed by fellow participants/researchers. Different types of stories were identified, those that are personal or shared narratives and those that are often repeated and form part of a person’s identity. The participants also shared insights into what it meant to live with dementia, using metaphor to explain their perceptions of a ‘dusty place’ in their brain, or door steps getting higher as the dementia prevents them from leaving their house.
Conclusions: The use of story can be an engaging way of including people with dementia in research and to learn more about their lived experience. This can help others to understand more about dementia and therefore how to provide appropriate support. The way that the participants interacted also provides learning on how to communicate and use body language, listening skills and patience to engage in a way which encourages a person to share their stories. The use of creative techniques is shown to support people with dementia to share their experiences both verbally and non-verbally and can help to break down barriers through greater understanding of what it means to live with dementia, and of different approaches to communicating with people with dementia.

Period	10 Dec 2020
Event title	34th International Conference of Alzheimer's Disease International
Event type	Conference
Conference number	34
Location	Singapore, Singapore
Degree of Recognition	International