The Dementia “Epidemic”: Examining Illness Metaphors in a Time of Pandemic

Avril Tynan examines the dementia “epidemic” and the problems posed by illness metaphors in the context of coronavirus.

In “Dementia as a Cultural Metaphor”, Hannah Zeilig explores the ‘diachronic phenomenon’ of dementia.[1] She argues that public understanding of dementia is shaped by the cultural metaphors we use to represent it while, at the same time, dementia itself has become a metaphor for wider social and cultural ills. Among the many cultural narratives of ‘crisis, war, uncontrollable natural disaster, and death’[2] in which dementia is embedded, Zeilig notes that ‘an anxiety about “epidemics” is often linked with dementia, implying that it is infectious and can be “caught”’.[3] Such metaphoric devices enable the construction of imaginative and symbolic ‘explanatory models’ for dementia that effectively communicate problems of scale.[4] ‘Metaphoric thinking’ need not, as Susan Sontag argues in Illness as Metaphor, be unhealthy or dishonest,[5] but any rhetorical device must be cognizant of the social, cultural and historical contexts in which it is embedded. In the current time of the global coronavirus crisis, the use of epidemic as metaphor needs critical re-evaluation. While dementia poses increasing challenges to health and social care globally, there the similarities with epidemics, including Covid-19, cease. The “epidemic” metaphor in a time of global pandemic allows us to rethink the entangled contexts of communication – both of narrative and of infectious diseases – and to re-centre the individual as the subject of disease.

According to the 2020 edition of the Oxford Concise Medical Dictionary, the noun epidemic refers to ‘a sudden outbreak of infectious disease that spreads rapidly through the population, affecting a large proportion of people’.[7] In media-driven political discourses, the term is now commonly used to refer to the sudden and widespread occurrence of pernicious problems – for example, gun violence in the US, loneliness, male suicide, and dementia  – that, while not infectious by nature, “spread” among populations and lead to public health and social crises. However, the current circumstances of global pandemic, characterized by virulent person-to-person inflection, demands that we reflect critically upon the appropriateness of such liberal use of epidemic as a metaphor.

Illness metaphors are interpreted in light of the ever-changing socio-historical and individual contexts in which they are enmeshed. Consequently, contemporary associations with coronavirus will infiltrate and structure future understandings of the term epidemic. The implications of a dementia “epidemic” therefore raise significant ethical and epistemological problems. Research and care provision for dementia-related diseases, for example, may well be hampered if our language continues to intimate stigmatizing notions of contagion, economic depression and mental and physical isolation inferred from the current global context. Yet, the immediacy of the current pandemic – in which the ongoing effects of the novel coronavirus influence directly or indirectly almost every aspect of our day-to-day lives – offers a chance to re-evaluate the implications of contemporary rhetoric on the representation and understanding of non-contagious widespread diseases. Challenging the accuracy and applicability of the epidemic metaphor encourages us to think beyond its totalizing anonymity and to consider instead the distinct individuals whose lives constitute its workings.

An Allegory of Cholera Mortality. Etching by A. Burdet after A. Raffet. 1804-1860.
Credit: Wellcome Collection.

In Illness as Metaphor, Sontag suggests that pre-modern epidemic diseases such as cholera, bubonic plague or typhus were imbued with cultural meanings of social disorder, immorality and political decadence that displaced judgement on the disease to a judgement on the community.[8] In contrast, modern diseases like cancer and AIDS reflected judgments upon poor individual moral and physical actions. To speak of a dementia epidemic, therefore, is to impose an unfavourable narrative upon a situation that, if anything, indicates global improvements in healthcare, economic stability and scientific advancement. If a societal malady can be discerned in some way, it belongs more appropriately not to those affected by dementia, but to those responsible for their care, whose dialogues are replete with ‘concepts of loss, dependence, and passivity’[9] that echo the narratives of impending doom found in medical science. In the epidemic metaphor, individual experience is a necessary but insufficient condition of collective malady, such that subjective accounts must be subsumed under anonymizing indications of immense size and scale. In this way, and as Sontag writes, ‘diseases understood to be simply epidemic have become less useful as metaphors’ because they incite a collective amnesia.[10] As we are seeing today, political and media coverage of Covid-19 has focused primarily on the rates of infection, death, hospitalisation, recovery, unemployment and economic loss that transforms individual instances of sickness and loss into statistics and figures to be compared on local and international stages. Epidemics, be they literal or metaphorical, do not focus on individuals.

This displacement of the individual as the experiencing subject in both literal and metaphoric applications of epidemiology raises concerns over the ways we will later remember the victims of Covid-19. [11] It also exposes pressing cultural and social issues surrounding the ways we approach, represent and treat people with dementia. Faced with the immediate challenges of coronavirus, we have an opportunity to reassess how we see the individual victims of epidemics, and to ensure their visibility both during and after the disease. In the UK, dementia and Alzheimer’s disease are the most common pre-existing conditions for Covid-related deaths, accounting for approximately 20% of deaths in the period from March to May 2020 and rising to over 40% in care homes.[12] People with dementia are therefore not only more likely to succumb to Covid-19, but are indirectly the victims of two epidemics, a fact that doubles their chances of erasure: individuals are lost first to the dementia “epidemic” and then to coronavirus. This is not, of course, to suggest that the two diseases are of immediate public concern in the same way, but that the extraordinary surge in the usage of the term epidemic ought to come with some warning to remember the humanity and the individuality of collective losses, even as we rush to count and compare at international levels.

Gilles Legardinier’s Nous étions les hommes [We Were Men] (2011), a thriller set in modern-day Edinburgh, demonstrates such human vulnerability and loss in a time of pandemic. In this novel, Alzheimer’s disease is elevated to the status of a literal epidemic as it starts to strike in more extreme and prevalent ways that lead to violent massacres across the globe, becoming ‘le plus grand fléau auquel l’humanité ait été confrontée’ [the greatest plague that humanity has faced].[13] Although the strain of Alzheimer’s disease in Legardinier’s novel is a radical form of what we know today – ‘une sorte d’Alzheimer foudroyant’ [a sort of sudden and severe Alzheimer’s][14] in which an individual suddenly reaches a ‘basculement’ [tipping point] and definitively ‘perd toute ses facultés cognitives’ [loses all their cognitive faculties][15] – it is characterized by familiar pathologies. The subject’s loss of communication, loss of memory, disorientation and aggression are exacerbated by the intensity and simultaneity of the onset of the disease that drains individuals of their humanity, reducing them to empty shells of their former selves in the case of older patients[16] and to vicious animals in younger victims.[17] This radical dehumanization underscores how dementia patients’ loss of narrative memory is commonly perceived as a loss of .[18] Although the body remains intact and unchanged, the degeneration of the mind provokes a failure to recognise the person in any meaningful way: subjects are not dead, but they are no longer considered human.[19] Yet, Legardinier’s novel ultimately aims to challenge this notion by emphasizing a common and contingent humanity that unites us even as it destroys us: ‘quelque chose de purement humain’ [something unconditionally human].[20]

At the centre of any epidemic – be it literal or metaphoric – are not numbers and statistics but unique subjects with individual experiences. Epidemics, as we are learning every day, rapidly overwhelm entire communities and risk obscuring subjective responses under collective hysteria, but this universality should compel us to rebuild our human connections by recognising that we as individuals are connected to others as individuals, and not as comparable statistics. While the dementia “epidemic” appeals to an urgent need for action on a tremendous scale, it bears no comparison to the coronavirus pandemic. Continued use of such rhetoric risks detracting from the current situation and threatens future efforts to treat and care for dementia patients. Instead, recognising that any epidemic is constituted by multiple individuals will help us to understand the significance and consequence of widespread disease. If we can learn anything from this extraordinary time of pandemic, it may be that global events do not tear us apart but unite us in our frailty and vulnerability and in our enduring humanity.

Avril Tynan is a postdoctoral researcher in comparative literature at the Turku Institute for Advanced Studies in Finland. Her work examines the role of narrative and ethics in the representation of ageing, illness and death and her current research explores affect and empathy in Francophone novels of dementia. She is on Twitter @avitynan

References

[1] Hannah Zeilig, “Dementia As a Cultural Metaphor,” The Gerontologist 54, no. 2 (2013): 258–67 (258).

[2] Zeilig, “Dementia,” 261.

[3] Zeilig, “Dementia,” 261.

[4] See Arthur Kleinman, The Illness Narratives: Suffering, Healing, and the Human Condition (New York: Basic, 1988), 48–49.

[5] Susan Sontag, Illness as Metaphor and AIDS and its Metaphors (New York: Doubleday, 1990), 3.

[6] Sontag, Illness as Metaphor, 58.

[7] Jonathan Law and Elizabeth Martin, eds., Concise Medical Dictionary, 10th edition (Oxford: Oxford University Press, 2020).

[8] Sontag, Illness, 58.

[9] Martina Zimmermann, “Alzheimer’s Disease Metaphors as Mirror and Lens to the Stigma of Dementia,” Literature and Medicine 35, no. 1 (2017): 71–97 (73).

[10] Sontag, Illness, 71. Sontag cites as evidence the ‘near-total historical amnesia about the influenza pandemic of 1918–19, in which more people died than in the four years of World War I’.

[11] See Avril Tynan, “Death in Isolation: The Covid-19 Dead Are More Than Numbers,” Medical Humanities Blog, 23 April 2020. In the UK, The Guardian invites the public to share their stories and memories of those who have died from Covid-19, ensuring that numbers are converted back to narratives while in the USA The New York Times has collated an interactive memorial, encouraging the reader to visualise the individual and his or her story amongst a faceless crowd.

[12] “Deaths involving Covid-19 England and Wales: Deaths Occurring in April 2020,” Office for National Statistics, 15 May 2020.

[13] Gilles Legardinier, Nous étions les hommes (Paris: Fleuve Noir, 2011), 422–23.

[14] Legardinier, Nous étions les hommes, 116.

[15] Legardinier, Nous étions les hommes, 45.

[16] See Legardinier, Nous étions les hommes, 38–39; 272.

[17] See Legardinier, Nous étions les hommes, 15–17; 97–102.

[18] Advocates of narrative identity, such as Paul Ricoeur, Jerome Bruner and Paul John Eakin, argue that a healthy sense of self depends upon an ability to construct a meaningful life story. However, the view that narrative is synonymous with personhood is frequently challenged in disability studies for its reliance upon a normative – healthy and able – matrix of lived experience. See James Overboe, “Ableist Limits on Self-Narration: The Concept of Post-personhood,” in Unfitting Stories: Narrative Approaches to Disease, Disability, and Trauma, ed. Valerie Raoul et al. (Waterloo, Ontario: Wilfrid Laurier UP, 2007), 275–84.

[19] Popular social constructions of people with Alzheimer’s as ‘zombies’ corroborates this view. See Susan M. Behuniak, “The Living Dead? The Construction of People with AD as Zombies,” Ageing & Society 31 (2011): 70–92; Carmelo Aquilina and Julian C. Hughes, “The Return of the Living Dead: Agency Lost and Found?” in Dementia: Mind, Meaning and Person, ed. Julian C. Hughes et al. (Oxford: Oxford UP, 2006), 143–61.

[20] Legardinier, Nous étions les hommes, 221.

 

 

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