Representing dementia: A qualitative analysis of how people affected by dementia situate themselves in relation to different dementia discourses

Dementia remains widely feared and stigmatised in contemporary society. Popular representations commonly reduce dementia to either concerns surrounding ageing, degeneration and death, or to an overly positive discourse of ‘living well’, both of which can present unrealistic expectations and socially distance people with dementia. Against this, individuals directly affected by dementia can provide more nuanced accounts that engage with multiple discourses and better reflect dementia’s complexity. Further qualitative exploration of these first-hand accounts is urgently required. The present study explores the perspectives of 51 people who are all affected by dementia, either by having a diagnosis or being a carer or loved one of someone who does. Through focus groups and interviews, this thesis examines how participants situate themselves in relation to wider portrayals of dementia. It considers how individuals represent dementia and people with/without the condition, respond to examples of images and language used in relation to dementia, and overall, how participants interpret, reproduce and challenge a variety of dementia-related discourses. This thesis draws on thematic, multimodal, critical and positive discourse analysis to examine how participants engage with a range of discourses. The approach combines a focus on overarching themes across the data with in-depth analysis of participants’ accounts and interpretations of the stimuli. This is considered in relation to broader social issues and the potential for positive change. Analysis showcases the complexity and diversity of participants’ representations, with participants reproducing, challenging and adapting a range of discourses, including biomedical, psychosocial, structural, embodied and relational. Analysis begins by comparing how two participants with dementia differently represent their experiences and interpret the same images, demonstrating the subjectivity and nuance of people’s engagement with discourses. Subsequent chapters attend to all focus groups and interviews to explore participants’ experiences of dementia, particularly of diversity, change and approaches to biomedical versus social spheres. Alongside this is an exploration of participants’ responses to different visual and linguistic practices, which culminates in a discussion of current representations and areas for improvement. Overall, three recommendations for improving dementia portrayals emerge from participants’ contributions: 1) normalise dementia; 2) provide more nuanced representations; and 3) better enable advocacy for people with dementia. This study foregrounds the importance of considering both individual and collective voices for dementia representations, alongside the role that people affected by dementia can play in countering problematic hegemonic discourses and providing more diverse, nuanced and experience-led accounts