Abstract
Research on media representations of dementia has intensified in recent decades, as population ageing has become an increasingly important global health concern. These representations are often produced by external perspectives, meaning that they draw on the views of people without lived experience of dementia (Bryden, 2020). As a result, analyses of these representations (especially their visual and linguistic features) often rely on interpretations made by researchers. Existing work in this field ranges from broader discussions about public expressions of dementia (Swinnen and Schweda, 2015) to fine-grained analyses of how the press constructs dementia through language and image (Bailey et al., 2021; Brookes et al., 2018). Yet it is equally important to examine how such portrayals are understood by those affected by dementia, as experience-based readings can illuminate alignment or misalignment with lived realities (Breheny et al., 2025). The book under review takes up this reception-oriented perspective by positioning people affected by dementia as ‘experts-by-experience’. The book explores how these individuals interpret, challenge, and rework widely circulating representations of dementia.
The book consists of seven chapters. Chapters 1 and 2 establish its theoretical and methodological foundations. Chapter 1 outlines different approaches to understanding dementia. It also defines discourse as a socially situated way of representing the world. The chapter examines the tension between two dominant ways of framing dementia. The first is the ‘tragedy’ discourse, which emphasises loss and degeneration. The second is the emerging ‘living well’ counter-discourse. This perspective highlights the possibility of maintaining quality of life. The chapter challenges the idea that these two discourses form a simple opposition. Chapter 2 presents the study’s theoretical positioning, research design, and methodological reflections. The study uses focus groups and one-on-one interviews to elicit participants’ responses to widely circulating linguistic and visual representations of dementia. These materials are analysed using thematic discourse analysis, an approach that integrates thematic and discourse-oriented traditions. Theme identification is largely inductive, and themes serve mainly as a loose organising framework for discourse-led analysis (Peel and Harding, 2014). The dataset is organised around recurring themes, such as how dementia is explained. Within each theme, the analysis examines how participants draw on different discourses, such as psychosocial and biomedical ones, to frame dementia in contrasting ways. The discourse-focussed analysis is informed by multimodal critical discourse analysis (Machin and Mayr, 2023), which is grounded in social semiotics and examines how meaning is produced and negotiated though linguistic and visual semiotic resources in context. The main analysis is presented in Chapters 3–6. Chapter 3 offers an in-depth analysis of one-to-one interviews with two women with dementia. They narrate their distinct experiences of dementia and interpret the same set of images (depicting people with dementia) in different ways. One draws closely on her personal and relational experiences. She frequently refers to coping and, at times, draws on a discourse of suffering to express a sense of loss. In contrast, the other adopts a more rights-based and structural perspective. She foregrounds the social and structural barriers faced by people with dementia. The chapter shows that interpretations of representations are shaped by lived experience and prior beliefs. It also demonstrates the value of combining researcher-led analysis with participants’ experiential perspectives.
Chapter 4 focuses on participants’ reflections on dementia and their responses to stock images of aged hands, which are commonly used to represent the condition. It showcases the diversity of dementia experiences and illustrates that the condition involves both loss and, more positively, sometimes even humorous aspects. Participants emphasise the heterogeneity of people living with dementia. They explain how differences in age, social position, and type of dementia shape their experiences. Through the analysis of these images, the chapter critiques portrayals that equate dementia with old age and present it in a generic, context-stripped way. It shows that such representations can reinforce loss-oriented understandings and points to the need to rework over-simplified and stereotypical depictions.
Chapter 5 analyses participants’ narratives of life with dementia alongside their engagement with common linguistic and visual metaphors. It shows that life with dementia involves both change and continuity, as well as both loss and gain, rather than simple decline. This chapter explores participants’ responses to the linguistic metaphors and related expressions used to describe dementia, including living, suffering, battling, and journeying. The notion of ‘living well’ is particularly revealing. Some participants see it as hopeful and empowering. Others, however, view it as imposing unrealistic expectations. They suggest more flexible alternatives, such as ‘live as well as you can’ or the less prescriptive ‘living with dementia’. The chapter also examines visual metaphors of cognitive decline. One example is the image of seasonal tree heads, where leaves gradually disappear to represent brain change. Some participants praise its clarity, while others criticise its linear and loss-focussed logic. They propose alternatives, such as using a ‘forest’ rather than individual trees to reflect diversity. Overall, the chapter shows how participants can creatively rework dominant depictions by challenging loss-oriented framings and rigid expectations.
Chapter 6 brings together the medical, personal, and media dimensions of dementia. It first discusses the ambivalent effects of medical explanations. These can legitimise experiences and reduce stigma, but they may also detach dementia from everyday life by foregrounding brain changes. Participants express differing views on medical interventions. Some place hope in treatment and cure-oriented futures, while others question clinical expertise and prioritise everyday support and quality of life. The chapter then foregrounds experience-based expertise. It shows how peer support generates forms of knowledge that complement medical perspectives. It also discusses responses to sensational and homogenising media representations. Throughout, the chapter emphasises that dementia is a lived and socially embedded experience, shaped by interpersonal relationships and everyday interactions. It concludes by distilling three key recommendations from participants’ reflections: normalising dementia, enhancing representational nuance, and valuing experiential expertise.
Chapter 7 summarises the book’s main findings and outlines future directions. It situates participants’ experiential insights within the constraints of news values and wider communicative pressures. The chapter explores possible pathways for discursive change within media structures. These include drawing on constructive journalism to balance negative reporting with solution-oriented narratives, making use of human-interest storytelling, and negotiating the tension between familiarity and novelty to gradually shift dominant representations, shaped by non-experiential perspectives. The book concludes by calling for further research. It suggests expanding the range of communicative forms studied, engaging more fully with critical and inclusive perspectives, and developing more participatory and co-productive approaches to representing dementia.
The central strength of the book lies in shifting attention from how dementia is represented to how people affected by dementia interpret these representations. It brings together externally produced depictions and participants’ experiential readings. At times, these are set in dialogue with existing academic analyses of the representation of dementia. This multi-perspective approach shows how familiar linguistic and visual portrayals of dementia are negotiated differently across lived contexts. It also makes visible dimensions that may be overlooked in single-perspective readings and creates discursive space for participants to challenge inaccurate, biased, or stigmatising representations. This approach is strengthened by the author’s reflexive stance and close engagement with participants’ accounts. The author acknowledges the co-produced nature of research encounters and reflects on their own role in shaping participants’ responses. For example, they consider how stimulus selection and interactional dynamics may shape participants’ responses. This reflexivity enhances transparency and supports a more critical reading of the findings. Extended excerpts are analysed in detail, allowing readers to follow how meanings and stances develop in interaction. The interpretive claims remain closely grounded in the data. The author’s clear and jargon-light writing style makes these analyses accessible to both academic and non-academic audiences.
By foregrounding experience-based readings of public portrayals, the book extends existing research on representation beyond production and textual analysis. It offers a valuable resource for scholars working on discourse and dementia communication, as well as for non-academic audiences, including people affected by dementia and stakeholders involved in media, policy, and public communication. By providing a rare and systematic account of how those affected by dementia make sense of public portrayals, it deepens our understanding of dementia representation. It also translates these insights into practical recommendations for more respectful and experience-informed communication. These have the potential to reduce stigma, improve public understanding, and strengthen social support.
At the same time, some questions remain. Because the study focuses primarily on people affected by dementia, it is less clear to what extent these recommendations can be taken up within established media systems and wider public discussions. Future research could address this by bringing production-side actors, such as media practitioners, into dialogue with experiential experts. This would allow for a more triangulated account of dementia representation across production, circulation, and reception.