Cultural representations of dementia

In a Perspective, Alexandra Hillman and Joanna Latimer discuss cultural representations of dementia in the media, film, and literature.

Published: March 28, 2017 Copyright: © 2017 Hillman, Latimer. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Funding: This work has been supported by a Wellcome trust postdoctoral fellowship award (WT091772) and an ESRC and NIHR grant exploring aspects of living well with dementia, the IDEAL study (ES/L001853/1). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests:
The authors have declared that no competing interests exist.
Provenance: Commissioned; not externally reviewed living with the condition, and how these implications may differ according to a person's social location.
It is in this tradition that researchers are interested in studying the proliferation of stories that seek to represent what dementia is, what it is like to have it, or what it is like to live with those who do. In Euro-American cultures at least, this proliferation of dementia stories has been reflected in mainstream press and television news as well as in works of fiction across TV, film, and literature (e.g., [16]). Accounts of dementia, particularly from politicians and in the press, tend to evoke frightening images, presenting it as a kind of living death for its sufferers-the body remains but the person is lost [17]. Such images include associating people with AD as zombies, creating a reaction of revulsion and fear. The language of loss and determinism pervade these dominant cultural representations, describing the growing incidents of dementia amongst populations as a rising tide, suggesting an unstoppable force. Smaller, personal stories that attempt to shed light on the experience of dementia tend to focus on the extremes of the disease, making dementia freakish, something that happens to "them" rather than "us" [18,19].
Running in parallel to these stories are representations of hope-not for the possibility of living well with the condition, but instead to eradicate it. These stories tend to focus on a potential miracle cure that might prevent cognitive decline as we age. Peel [13] describes this dichotomy in United Kingdom mainstream press as a "panic blame discourse" that reproduces images of dementia as inevitable loss and decline while simultaneously telling stories about strategies for staving off the disease. This reframes the condition as something amenable to individual behaviours and choices and thus a failing of those afflicted to age successfully-a judgement that may unevenly befall on the most economically and physically vulnerable.
Alongside the press attention, we see TV, film, and literature increasingly feeding into cultural understandings of dementia (for example, Emmerdale Farm ITV 2016 [20]; Wallander BBC 2016 [21]; Elizabeth is Missing by Emma Healy, 2014 [22]). One film, Iris, by Richard Eyre based on the book Iris, A Memoir and Elegy for Iris Murdoch, 1998 [23], written by John Bayley, offers a nuanced message (see also [24]). Rather than depicting dementia only in terms of a diseased brain, and personhood as only associated with this rather impoverished understanding, dementia is also portrayed as disordering identities and ways of relating to others that transform, rather than just obliterate, the person. In particular, the film shows how dementia challenges the complex social processes that produce, the appearance at least, of the discrete individual, including cooperation, or what sociologists such as Erving Goffman observe as a person's capacity to fit in, get along, and pass as a member. Thus, the film helps to trouble and challenge a discourse of waging a war on dementia. Dementia in art has also been used as a vehicle to explore some fundamental existential questions about what forms the basis of our being in the world. The film Robot and Frank, 2013 [25], set in the near future, depicts a relationship between Frank, who has dementia, and his robot procured by Frank's children to provide living-in-home help for Frank as his dementia progresses. Through this relationship, the film raises interesting questions about the connections between memory, identity, and humanity: what is it that makes us human? In particular, Frank's being in the world is shown to be somewhat prereflective [26]: it is embodied, emotional, and, finally, social. Iris, Frank, and, more recently, Alice from the novel and film Still Alice, 2015 [27], embody the contradictions that make up contemporary images of dementia. On the one hand, they reflect our fears of obliteration, the tragedy of a gradual chipping away of our humanity; while on the other hand, we are met with characters who remain present as a moral force, who feel pleasure and pain, who have emotional responses and connections to their social and material worlds. Perhaps the effects of the disease are less of a tragedy than the torment of our own contradictions. For example, at the end of the film Iris, we see her husband and her friends accepting that she is someone different, with Iris herself happy in a new environment where she is able to be the person she has become rather than who she once was.
There are many ways of unlocking and challenging the assumptions that underpin cultural understandings of dementia, as many of these depictions in film and literature are beginning to do. There are also worldwide programs pressing ways to destigmatise dementia (e.g., [28]), with new social formations creating possibilities for living with dementia differently, such as dementia-friendly communities across Europe, Japan, and the United States. In these ways, alongside biomedical and public health programs for addressing whether there are disease processes that underpin dementia and which can be remedied, different communities are finding alternative ways of being in the world that are more accepting and embracing of the kinds of disruptions that dementia can produce.