Public discourses of dementia: Embedding lived experiences through participatory approaches

Dementia affects over 55 million people worldwide, with nearly a million in the UK alone - a number that continues to rise. Despite growing awareness of dementia, the syndrome still remains widely misunderstood and deeply stigmatised within society. As a result of the stigma that surrounds it, many people diagnosed with dementia feel a pronounced sense of shame - a feeling which can, in turn, delay diagnosis, hinder access to care and discourage participation in research. At the same time, the general public often lacks accurate knowledge of dementia, for example with many people wrongly assuming it to be an inevitable part of ageing or being unsure as to how to communicate with those diagnosed with it. This project tackles the urgent problem of dementia stigma by focusing on how the condition is represented in public communication - especially through language and imagery. While previous work has shown how certain kinds of language use and imagery can reinforce negative stereotypes around dementia, this new project takes a crucial next step: understanding and promoting more authentic, stigma-challenging representations that reflect the real-life experiences of people living with the syndrome. To do this, the research team will study three types of public texts: popular science articles, news stories and content created by generative AI tools. These texts often shape how the public thinks and communicates about dementia, yet they rarely include the voices of people actually living with it. The project will examine how these texts represent dementia, and how such representations differ from lived experiences, ultimately seeking to work towards proposing ways in which such communication might better reflect such lived perspectives in the future. A key innovation of the project is its participatory approach. The team will run focus groups involving people with dementia, their carers and families, healthcare professionals and media professionals. These groups will help interpret findings, suggest improvements to how dementia is portrayed, and co-design guidelines that seek to support ways of communicating about dementia that better reflect authentic experiences. For example, participants will react to samples of AI-generated text and suggest better ways to prompt AI tools to produce portrayals of the syndrome that are more accurate and less stigmatising, and which incorporate the perspectives of those with first-hand experience of it. To realise this impact, the project will produce practical, evidence-based communication guidelines for journalists, charities and others who communicate with the public about dementia. By combining advanced language analysis with direct input from people affected by dementia, this research aims to challenge stigma and promote more informed and compassionate public attitudes towards the syndrome and those affected by it. It will also make a lasting academic contribution by demonstrating how focus groups can be effectively incorporated into large-scale (corpus) linguistic studies. Ultimately, the project hopes to make it easier for people with dementia to be seen and heard in society, on their own terms. In this way, the work contributes to broader efforts to help society move away from fear and misunderstanding of dementia, and toward dignity, understanding and inclusion.