Blog post written by Malgorzata Bugaj
In her keynote paper opening the Dementia in Film, Media and Culture symposium at Edinburgh’s Queen Margaret University, Sadie Wearing (London School of Economics) drew attention to the responsibilities around the representations of dementia in mainstream fiction film. Wearing called for reparative interpretations of films – interpretations capable of counterbalancing the dominant negativity and depressive positions surrounding the on-screen portrayals of the condition. These could include critical readings posing questions that confront the prevailing assumptions or challenge common interpretations. As an example illustrating her argument, Wearing referred to Relic (2020, dir. N. E. James), which employs many traditional tropes of horror, but has been interpreted here as a story of redemption through practices of care. Organised by Michael Stewart (Queen Margaret University) and Malgorzata Bugaj (University of Edinburgh), the symposium, held on 31st May 2024, provided a range of such critical reflections and provocations by academics, filmmakers and practitioners. This blog post briefly summarises the papers presented on the day.
Representations of people living with dementia raises a number of urgent ethical questions, such as those related to documentary filmmaking (Camilla Vanebo, Inland Norway University of Applied Sciences)and film exhibition (MaoHui Deng, University of Manchester). Vanebo drew on her experience as a producer of the Norwegian documentary Stay/Vær (2021, dir. R. Nøst Bergem), which depicts three characters in different stages of dementia living in different circumstances. She considered the perspectives of the cast, narration, and method in the filmmaking process by posing questions about the moral implications of working with participants living with dementia. Evaluating the usefulness of dementia-friendly screenings, Deng argued that these events allow people living with the condition and their carers to experience a sense of normality and escape into narratives. However, this exhibition practice can also perpetuate the coloniality of dementia discourses, raising questions about inclusion and exclusion, particularly regarding class and race. Deng also addressed ethical issues surrounding Cameron’s vision of the Big Society, which positioned dementia-friendly screenings as part of socially prescribed referrals, aiming to transfer the costly duty of care from medical services to individuals.
Further papers shifted focus to the ethics of cultural representations of dementia in TV (Kevin Geddes, Edinburgh Napier University, and Jeremy Collins, London Metropolitan University) and 21st-century French literary fiction (Avril Tynan, University of Turku). With the BBC TV biopic Fear of Fanny (2006), Geddes highlighted the film’s largely exploitative portrayal of the popular British TV personality Fanny Cradock, emphasizing the impact such depictions might have on the legacy of the individuals portrayed and, more broadly, the public perception of dementia. Jeremy Collins tipped into national memory by investigating Our Friends in the North (1996), a state-of-the-nation British TV show spanning over 30 years, in which the father of one of the protagonists develops dementia over time. Alzheimer’s disease is used here as a narrative device to explore the evolving relationship between the father and son, highlighting their care for societal issues but not for one another. While narratives about dementia typically emphasize closure, the two novels Tynan focused on—Guillaume Musso’s Central Park (2014) and Mélissa da Costa’s Tout le bleu du ciel(2020)—frame Alzheimer’s as an obstacle to overcome and a potential new beginning. However, Tynan raised ethical concerns over such overly optimistic accounts of the condition and the perceived necessity to conform to broader cultural ideals of youth (both novels centre around very young characters with early-onset Alzheimer’s), even in dementia narratives.
Attempts to convey the embodied experience of living with dementia through more experimental cinematic forms and intermediality were discussed as a way of confronting the epistemic injustice surrounding the condition. Melinda Blos-Jani (Sapientia Hungarian University of Cluj-Napoca) referred to affective intermediality, that is intermediality understood phenomenologically, with cinematic images appealing to multisensory memory employed to visualize the experience of dementia. Blos-Jani proposed the analysis of recent documentaries: Alda (2009, dir. V. Čákanyová), Fragile Memory (2022, dir. I. Ivanko), or Eternal Memory (2023, dir. M. Alberdi), in which the decaying materiality of the analogue medium echoes the deteriorating memory caused by progressing dementia. Similarly, through the concept of cinematic theatricality, Ilia Ryzhenko (University of Warwick) argued that engagement with the immediacy of The Father (2020, dir. F. Zeller) blurs the boundaries between the world of the film and the world of the audience, as the character and the viewers share the temporal and spatial disorientation, providing a more accurate insight into the experience of living with dementia. Aagje Swinnen (Maastricht University) applied a critical post-humanist lens in the discussion of Human Forever (2023, dir. T. Toebes and J. de Jong) and Are You with Me (2021, dir. M. Lindenberg and S. van Ghesel Grothe). These documentaries run counter to prevailing stigmatizing narratives on dementia and promote social justice for those living with the condition by focusing on the value of intergenerational relations, meaning-making through the senses, the entanglement of people with their material surroundings, and the potential of late-life creativity in dementia care.
Two complementary presentations put artificial intelligence in the spotlight. As Emma Putland (Lancaster University) argued, AI is not exact in its reflection of society; rather, it provides an insight into existing discourses and perceptions. Putland reported on her project conducted with Gavin Brookes, in which AI-generated visual representations of people living with dementia: portrayals of individuals avoiding eye contact, visual metaphors of a brain as a barren tree, and images obscured by fog, blur, and characterisedby an absence of color. Such representations, as Putland stressed, have a strong potential to amplify existing stigmas, particularly those associated with the social distance towards dementia. As a counterbalance, Sih-Ying Hsien (University of Glasgow), Mei-Hui Liao (Collaborative Lecturer of Art For All), and Min-Chen Wang (Director of Social Work Division, Excelsior Health Foundation) presented the Taiwanese “Time Machine,” a collaboration between art educators and social workers. Here, AI was used as an accessible tool aiding reminiscence therapy for people living with dementia by creating multi-sensory stimuli to trigger memory, such as evocative images of steaming food.
Jiahui Qi (University of Leicester) concentrated on Chinese social media and other online communities. The aim of her research was to investigate how dementia is discussed and understood in online fora, and how those living with the condition are depicted in the videos created for online environments. Also within the context of the Sinosphere, Corey Schultz (University of Nottingham Ningbo China) discussed the Eight Virtues, the foundational principles integral to Chinese ethics over centuries, with filial piety as the virtue of exhibiting love and respect for older generations. Schultz focused on traditional and contemporary discourses on filial piety in Chinese visual culture—recently in social media—in response to the challenges associated with an ageing society.
The symposium concluded with the screening of two Scottish short films: Isabella (2015, dir. D. Cowles and R. Hogg), a Scottish BAFTA winner that blends animation and live-action, and Darkness in the Afternoon (1999, dir. Ch. Winford), an educational fiction film aimed at promoting Tim Kitwood’s person-centred approach. The screening was followed by a conversation with the director of the latter film, Christeen Winford, focused on short films, documentaries, and dementia self-advocacy. Winford discussed films she directed or co-produced, which capture the voices of people living with dementia, to align with the statement “nothing about us without us”. In addition to Darkness in the Afternoon, made for the Dementia Services Development Centre at the University of Stirling, Winford highlighted Thief in the Night (dir. B. Crumlish), created for Channel 4, and Through Our Eyes (2010), a training film by the Scottish Dementia Working Group. The remainder of the discussion examined how cultural representations of dementia impact social and individual attitudes towards the condition.
As Avril Tynan noted, following Martina Zimmermann (2020), cultural narratives of dementia are defined by ideas of loss: the loss of memory, loss of self, and loss of the future. Fear was identified as a dominant emotion circulating in the public discourse regarding the condition: Wearing noted that this sentiment resonates with more pervasive fear of death and disability in our culture; Swinnen attributed it to the fear of cognitive decline characteristic of the West, while Geddes drew attention to fear perpetuated by exploitative portrayals of dementia in film and media. Cultural products tend to reproduce and amplify negative tropes associated with dementia. Highlighting a variety of voices and representations of dementia can encourage a more critical approach to dominant narratives, acknowledging that the experience of living with or close to the condition is not uniform. This was the aim of “Dementia in Film, Media and Culture”, which brought together a polyphony of viewpoints from diverse perspectives, disciplines and contexts: film, literature, AI and digital media. Given the zeitgeist nature of dementia, such reflections on the consequences of cultural representations for broader understandings of the condition are urgently needed.
Thank you to Malgorzata Bugaj for writing for the ECRED blog.
Some themes from Malgorzata’s blog also connect with a seminar led by ECRED earlier in the year on portrayals of dementia in the media. To read more about the event, click here.
