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Abstract
This article contributes to debates about the category “dementia,” which until recently has been dominated by biomedical models. The perspectives of critical gerontology are pertinent for extending knowledge about dementia and guiding this analysis. These perspectives encourage examination of cultural and historical influences and thus question how societies have constructed and defined dementia. This article queries the stories told about dementia and the language that we use to tell these stories. Central to the article is an analysis of some of the stories about dementia that are contained within and framed by contemporary culture. A number of films, TV documentaries, news reports, theatre, memoirs, novels, and poems that portray some of the experiences associated with dementia are interrogated. These representations are examined as they either perpetrate or challenge stereotypes about living with dementia. Analysis of these representations demonstrates the sociocultural construction of dementia and the extent to which dementia is a diachronic phenomenon. Above all, the article considers (a) the social and political dimensions of dementia, (b) the ways in which the metaphors persistently used to explain dementia shape our consciousness about this condition, and (c) the extent to which dementia is an inherent part of contemporary life.
Dementia: Biological Condition, Personal Story, and Cultural Metaphor
“Dementia” is a general diagnostic category that in common use is frequently confused with “Alzheimer’s disease” (AD). Scholars have called for critical attention to the ways in which these mental health categories reflect biomedical assumptions and yet are also socially constructed concepts (Basting, 2009; Gubrium, 1986; Kitwood, 1997; Kontos & Naglie, 2007). The terms dementia and AD are therefore complicated and invoke emotional responses, and it is the combination of these factors that inform the stories that we are told and that we tell about dementia.
This article represents an attempt to explore some of these stories. The ways in which metaphors shape and frame these accounts is explored, as is the extent to which the term dementia has itself become a metaphor for wider social ills (this is not dissimilar from the way in which the mental health disease category, schizophrenia, has become a metaphor for a number of contradictory social and cultural trends).
A range of emotionally charged metaphors about dementia pervades the popular imagination, and these are found in newspaper accounts, political speeches, and in both documentary and feature films. Metaphorical descriptions of dementia can also be discerned in medical and scientific texts. In this article, some of the ways in which these metaphors contribute to misunderstandings about dementia are discussed. In addition, the ways in which several film directors, playwrights, and writers have used experiences connected with dementia as a means of questioning wider existential issues are also examined.
The perspectives of critical gerontology, which encourage us to question the stories and storying of dementia, underlie this analysis. Critical gerontology offers insightful ways of challenging some of the cultural norms of ageing and is thus particularly pertinent to this study (Holstein & Minkler, 2007; Ray, 2008).
It should be noted that throughout this article, the umbrella term dementia is predominantly used but that AD is referred to where this is relevant.
What Is Metaphor?
The word metaphor comes from the Greek metaphora, which derives from “meta” meaning over and “pherein” meaning to carry (Oxford English Dictionary). The term refers to a set of linguistic processes whereby aspects of one object are carried over or transferred to another object. In a metaphor, there is a sense of relationship created between two objects or concepts. Reference to the etymological origins of the word is useful as these indicate the connection that “metaphor” has to speech and also to thought.
A metaphor works by making implicit comparison between two unlike things; thus, what is unfamiliar is described by something that is familiar. It is not only the similarity between the things compared that is important but also the difference; both the principal and subsidiary subjects are transformed and yet preserved (Radley, 1993, p. 112). We all use metaphors all the time, for instance, we talk about the journey of life, blue-sky thinking, the black dog of depression, and so on. A metaphor operates by yoking ideas directly together without the use of “as” or “like” that characterizes a simile. We rely on metaphors when explaining difficult concepts, including emotions (like love) that guide our lives.
Thus, metaphors can be partially understood as powerful expressive modes of communication. They can render apparently ephemeral emotions and concepts tangible (as exploited in advertising) and are often visual. However, metaphors also have a cognitive aspect, a connection to the ways in which we think. This links back to the origins of the word that involves the idea of meaning being transported or carried over (Hesse, 1988). Scientific study also relies on the language of metaphor. These can be found, for example, in the notion of “string” theory, in Darwin’s “tree of life” (a metaphor that broke with earlier conceptions of the “ladder of life”; Colyvas, 2007), and in Einstein’s work on relativity (Garfield, 1986).
Metaphors then, are not simply a device of our language. They also influence the way in which we perceive our worlds and therefore the way we explain and live in them. For example, tree imagery is associated with the brain. The “roots” or “dendrites” of neurons (dendrite is from the Greek word for “tree like”) are referred to, and it is possible that this dominant metaphor determines how the brain is studied. Certainly, the tree metaphor is quite central to how dementia is imagined in medical contexts in the common references to “the forest of neurons” (Wippold, Cairns, Vo, Holtzman, & Morris, 2008) and to brain cells “with shrunken dendritic trees” (Buell & Coleman, 1979) (tree imagery also dominates fictional accounts of dementia, for example, in the poetry of Carlin [Zeilig, 2012] and in the novel by Harvey [2009]).
So, metaphors are not only essential to communication but are also innately connected to the ways in which we see and process the world. The duality of metaphors is particularly pertinent for understanding dementia. However, before turning to a consideration of dementia in metaphorical terms, it is worth briefly considering what might be meant by the term dementia.
What Is Dementia?
The word dementia (from the Latin de mentis—out of the mind) did not originally refer to an age-related condition (Berrios, 1987). However, today dementia, which in popular discourse is used interchangeably with “AD,” is predominantly associated with older people (although associations between AD and dementia were outlined in the late 1950s and 1960s [Corsellis & Brierley, 1959; Roth, Tomilinson, & Blessed, 1966], historians have demonstrated that the current sociocultural construction of AD and dementia first emerged in the late 70s and 80s [Ballenger, 2006; Herskovits, 1995]). The words dementia or AD evoke strong feelings: they have become heavily value-laden terms. Both may be understood as semiotic concepts (in semiotics, words such as dementia and AD can be understood as “signs” that carry meaning that is representative of cultural values) that are the locus of many meanings and emotional resonances.
Even in medical and scientific texts, dementia is conceptually slippery; it retreats from and resists definition. In medical contexts, there are uncertainties about establishing organic “facts” concerning the pathology of dementia and AD (Gubrium, 1986, p. 31; Sabat, 2001), and recent paradigm shifts in the biomedical model of AD also obfuscate the issue (George, Qualls, Cameron, & Whitehouse, 2012; Gubrium, 1986). These shifts are exemplified by the new clinical and research guidelines (Diagnostic and Statistical Manual of Mental Disorders-Fifth edition [DSM-V]), which indicate that AD is a heterogeneous set of conditions rather than a single event (George et al., 2012).
Dementia and AD cannot easily be defined because both have been subject to subtly changing psychiatric, biomedical, and social/cultural stories. This is not to deny that they both represent biological mental illnesses (Berrios, 1987). However, on a conceptual level, the terms are open to interpretation and subject to historical and cultural mores. The drive to see AD and dementia as specific disease entities and to link age-related dementia with AD has been connected to the evolution of geriatric psychiatry, societal forces, as well as the work of clinical neurologists, neuropathologists, and others (D’Alton & George, 2011; George, Whitehouse, & Ballenger, 2011). Classifying AD and other age-related dementias as a unified entity has also been politically powerful (Ballenger, 2006; Gubrium, 1986). It has facilitated funding and research into diseases for which it is implied that there will eventually be a cure.
Above all, for most of us, the word dementia like AD invokes a profound dread. Dementia has replaced cancer as the scourge of modern times (Van Gorp & Vercruysse, 2012, p. 1274). The discourses of the scientific community reinforce this pervasive sense of horror about dementia and AD. For example, the prevalence of dementias is described in dramatic terms as an “epidemic” and a “crisis” (Mandell & Green, 2011, p. 4). The economic burden of disease is often noted (Knapp & Prince, 2007) and AD is frequently referred to as a “plague” (Lees, 2012; Mandell & Green, 2011, p. 5). Even the references to amyloid plaques and tau tangles by scientists fuel the perception of dementia as a knotty problem that is out of individual control. The neurologist Lees describes plaques in profoundly metaphorical terms as resembling “sepia galactic storms” (Lees, 2012). Recently, scientific discourse has been shifting from a focus on the molecular “war” on amyloid to investigating brain reserve (D’Alton & George, 2011). The metaphorical notion of reserve involves the sense of positive accretions and may encourage scientists to look beyond monolithic theories.
The language of medical science is not neutral, and it is echoed by the wider cultural stories that we tell about dementia.
Cultural Stories About Dementia
In attempting to unravel some of these cultural stories, a wide range of sources have been drawn on. This is in order to provide an overview (rather than a systematic analysis) of some of the persistent stories we tell and are told about this condition.
The danger of flooding has long been associated with dementia. A 1982U.K. report was entitled: “The rising tide: Developing services for mental illness in old age” (Arie & Jolley, 1983). Rising tides continue to inform the language of contemporary politicians when discussing dementia. Thus, the U.K. Prime Minister (David Cameron) referred to the need for Britain to change its attitude to the “rising tide of people suffering with dementia” (May 26, 2012).
The “silent tsunami” of dementia has also been a dominant watery image in many news stories. There are reports of the “slow-moving tsunami” (an oxymoron: tsunamis are not slow moving) and the “wave” of dementia (April 26, 2012). In both cases, there is a sense of an unstoppable force of nature coupled with quiet stealth. Indeed, the silence is particularly sinister suggesting something that we cannot anticipate (insistent references to “the silent epidemic” of AD were also noted by Gubrium [1986, p. 34]). The notion of floods is also curiously biblical. Both nature imagery and biblical allusions pepper the language that is used about dementia (in the U.K. media). A recent news report referred to dementia as a “millennium demon” and the need for a “crusade” to overcome it (Willey, 2012). Here, religion and war are neatly juxtaposed. This achieves a multiplicity of effects, including an emphasis on faith and battle and on something that not only is metaphysical but can also be “won.” The overall impression is of dementia as huge and ancient. It is beyond our grasp and can only be understood through reference to massive natural phenomena (usually disasters) or in biblical/mythical terms.
It is interesting that in the 1980s, HIV/AIDS was similarly conceptualized in terms of natural disaster. Other scholars have explored similarities between the representations of AD and HIV/AIDS (Jolley & Benbow, 2000).
In his keynote speech about increasing funding for dementia, the U.K. Prime Minister talked about “the quiet crisis, one that steals at lives and tears at the heart of families” (March 26, 2012). This language echoes descriptions of primeval monsters such as Grendel in the Anglo Saxon poem “Beowulf” (Heaney, 1999). Dementia becomes an invader that creeps up on people and steals them from themselves. The powerful animation of dementia as a monster has been brilliantly described by Aquilina and Hughes (2006) and Behuniak (2011). Both studies expose the similarities between descriptions of people with AD and zombies. It follows that people with dementia are depicted as “victims” and that dementia is indissolubly linked with a living death.
Another recurring linguistic device in the cultural framing of dementia is the reliance on military and war-like metaphors. So David Cameron (March 26, 2012) proclaimed: “We need an all-out fight-back against this disease; one that cuts across society.” The dementia “time bomb” crops up frequently in U.K. broadsheets (Furness, 2012) and tabloids. Time bombs are devices that could go off at any time; their most common use has been in politically motivated terrorism. The association of dementia with terrorist tactics is fascinating, invoking the sense of a threat that can’t quite be grasped in any ordinary way.
Other metaphorical devices for describing AD or dementia include images of darkness and shadow. For example, darkness is often contrasted with light, the light of possible medical advance. Language around “burden” and weight also recurs, as does the term crisis, and this is most often associated with financial imperatives. An anxiety about “epidemics” is often linked with dementia, implying that it is infectious and can be “caught.”
On the other hand, the press and television documentaries abound in “personal” stories about dementia and in tales of cures that are imminent or preventative measures that can be taken to ward it off (Choices, 2011). For the most part, documentaries, memoirs, and news stories about individuals with dementia concentrate on the extraordinary. For example, “The Express” newspaper reported on a husband’s brutal “knifing” of his wife who had dementia (Twomey, 2011). These stories contribute to society’s ghoulish interest with the extremities to which dementia can lead. Dementia is thus framed as a particularly freakish condition.
Louis Theroux’s TV documentary “Extreme Love” (Child, 2012) similarly betrayed a tendency to highlight the oddities of those with dementia in a U.S. care home. All these accounts of dementia present us with an outside view. We, the audience, are in the position of witnesses (even judges) to something that is totally alien. Although we seem to connect with individual stories about dementia, the consequence is to create an even greater sense of distance between “us” and “them.” There are eerie echoes with the guided tours around lunatic asylums in the Victorian era.
The popular metaphorical framing of dementia then seems to operate on two levels. It is generalized as a vast, natural or monstrous force that we must fight, and it is also located as a very specific condition that affects individuals in extreme ways. In both cases, the effect is to make us feel both terrified and powerless. As Terry Pratchett aptly said: “People seem to think of Alzheimer’s as something rather terrible and dreadful, almost as if witchcraft is involved” (Borland, 2012).
Just as witches and witchcraft provoked irrational responses hundreds of years ago, so an undercurrent of hysteria is perceptible in many of the stories we are told about AD or dementia. Equally, there is an impression of dementia as a supernatural threat. The danger is that this may result in apathy and a defeatist sense of hopelessness. As has been noted (George et al., 2011), the phenomenology of dementia over the centuries has been causally associated with witchcraft among other factors.
Dementia As a Metaphorical Device
An exploration of the metaphors that frame dementia has led to a wider query:
Whether the concept ‘dementia’ functions as a metaphor in itself?
This can be demonstrated by considering the words “9/11.” These words have so frequently been linked with death, terrorism, and threat to the fabric of western society that they have now taken on these meanings. Similarly dementia, which is so persistently associated with crisis, war, uncontrollable natural disaster, and death, has become synonymous with a general sense of calamity. In linguistic terms, dementia can almost be considered a metonym (a figure of speech in which the word for a part of the subject is taken for the whole, e.g., where White House = president or wheels = car). A rather simplistic equation has developed:
Dementia = a complex, unknowable world of doom, ageing, and a fate worse than death.
The cultural framing of dementia has resulted in a putative understanding of dementia and AD as something that is incredibly frightening (it should be noted that more positive representations of people with dementia are appearing.) The voices of those with dementia are beginning to be heard (Terry Pratchett in the United Kingdom and Richard Taylor in the United States among others.) A study of German news magazines (Kessler & Schwender, 2012) revealed a preponderance of positive representations of dementia.
However, there have been alternative and intriguing interpretations of dementia. In some films, plays, and poems, dementia has been used as a trope for exploring a number of participants loosely related to the pathological and other processes associated with the condition dementia (Zeilig, 2012).
After all, dementia invokes a heady combination of anxiety about old age and about mental illness. To be both older and mentally ill is to be doubly marginalized. An older person with dementia is at the extreme edge of mainstream society, which remains stubbornly youth oriented. It makes sense then that for some writers, poets, and directors, the exploration of dementia through a central character or situation has also been a means of questioning politics, social mores, morality, and the nature of our humanity.
For example, the Mike Leigh film “High Hopes” (Leigh, 1988) is set in King’s Cross, London during the Thatcher era. Central to the narrative is the character Mrs. Bender, an older woman who is clearly having problems with her memory and functioning (although the term AD is never used in the film). Throughout the film, Mrs. Bender is evidently an inconvenience. Her shabby house irritates her wealthy neighbors, her neurotic daughter is unable to communicate with her, and her socialist son (Cyril) is uncomfortable in her presence. There are several scenes in which she is physically tugged about, like a package that needs to be stored somewhere.
Mrs. Bender’s inability to behave in socially acceptable ways is deeply disconcerting for others. The image of an older woman who does not fit in is steadily built up; no one knows quite what to do with her. The apotheosis of the film is Mrs. Bender’s 70th birthday party. She has been forcibly taken to this surprise party and is entirely bewildered by the event. The scene culminates with her daughter force-feeding her cake. Thus, her old age is ostensibly celebrated, but on a day-to-day basis, her needs are not confronted at all. This might plausibly be read as a comment on how society treats dementia and old age, which despite the occasional (misdirected) grand gesture are mostly ignored.
“High Hopes” is a critique of the advanced capitalist values of Thatcher’s Britain. The film comments on the struggle within an increasingly materialist world to uphold socialist values (values that are embodied by Mrs. Bender’s son Cyril and his partner Shirley). At the nexus of these concerns is an older, forgetful woman. Mrs. Bender’s dementia and how it makes others react is a metaphor for all that is wrong with contemporary life. Leigh’s film articulates the dangers of a society that is disintegrating into a race to accumulate wealth and the hazards of a preoccupation with surface appearances. The film demonstrates how these superficial concerns can lead to a neglect of our humanity.
At the end of the film, it is precisely Mrs. Bender’s vulnerabilities that lead to a transcendent moment. Shirley brings her back to their flat, explaining to Cyril “She’s gone a bit vague, she was frightened” and “She’s your Mum.” Thus, Mrs. Bender’s feelings are prioritized for the first time, as is her relationship to others: she is a mother. In the last scene, Shirley and Cyril take her up onto the roof of their tower block; here, they share a view of London. They are all marginalized from mainstream society (whether by political belief or due to dementia). Yet, their common humanity is evident, and similarly, we are shown that caring behavior is humanizing (Swinnen [2012] also outlines the way in which a documentary film “Mum” invites viewers to recognize the continued personhood of a mother with dementia and the value of caring for both mother and daughter). The logic of the film is that dementia may happen (just as rampant capitalism may take over) but that what defines our humanity is how we react to these occurrences.
There are marked similarities between Mike Leigh’s vision of an older mother with dementia and Asghar Farhadi’s portrait of an older father with AD in the recent film “A Separation” (Asghar, 2011). This film is set in contemporary Iran, as in “High Hopes,” the action revolves around kitchens and living rooms and is in the vein of social realism. It centers on the separation of a husband and wife, Nader and Simin. Simin hopes to emigrate from Tehran; however, Nader will not contemplate leaving his father who has AD. Nader’s father is the catalyst for the action in the film. It is because of him, that tensions in Nader’s marriage are revealed and also due to the complexities of finding care for him that religious dilemmas are revealed.
Throughout the film, Nader’s father is mute, but his emotional life is evident. The viewer is left in no doubt that he is a sentient human being. The extent to which dementia is woven into the fabric of the film rather than “lifted out” for examination was admired in a recent scholarly review (Scheidt & Vanden Bosch, 2012). As in “High Hopes,” the dementia of an older relative exposes the failings of a society that does not provide adequate care for older vulnerable citizens. Dementia in “A Separation” also provokes existential questions about human nature, morality, and identity. The film’s action depends on a key moment at the beginning. Simin bitterly rebukes her husband for his devotion to his father; she says “He doesn’t remember who you are.” Nader retorts “But I remember that he is my father.” Both “High Hopes” and “A Separation” invite us to appreciate the complexities that abound in caring for someone with dementia and to see it as a political issue. Above all, we are never simply privileged outsiders who are looking at the pathologies of an illness. In both films, the figure of an older relative with dementia can also be read in metaphorical terms as indicative of the fraying of society, the difficulties of continuing to care and yet crucial need to do so.
These films stand in stark contrast to more mainstream cinematic approaches to AD as outlined by Cohen-Shalev and Marcus (2012). As these scholars outline, the best-known films in which AD is featured (such as The Savages/Away from Her/Iris) tend to encourage the viewer to look dispassionately at the person with AD. Mainstream films frequently concentrate on the plight of the carers and reinforce medical models of the condition as obscure and impenetrable. Similarly, the recent treatment of Margaret Thatcher’s AD in the biopic Iron Lady (2011) encourages us to look (and marvel) at the myriad ways in which a once hugely dominant figure in British political life has been undermined by the processes of AD. Dementia is portrayed as it “beats” the omnipotent Prime Minister and the net effect is to distance the viewer. (It is, however, interesting that a threatening political landscape forms the backdrop for Thatcher’s dementia. The Brixton riots, IRA terrorist attacks, and poll tax riots are fore grounded as is the 1983 Falklands war. The image system [of corridors, windows, mirrors] is suggestive of institutions such as prisons or hospitals. Dementia is implicitly paralleled with an insidious threat to the social fabric of society, but one that cannot be legislated for.)
“The Mother of the Muses” is a poem by Tony Harrison from his collection “The Gaze of the Gorgon” (Harrison, 1992). This also has dementia at its dramatic core, and it too uses dementia as a metaphor, although with a rather different emphasis from the two films (High Hopes and A Separation) discussed previously. A crucial point in this poetic meditation is the question:
If we are what we remember, what are they
who don’t have memories as we have ours . . . (stanza 21).
The poem uses dementia as starting point for a philosophical reflection on the nature of identity and its relationship to memory.
“Mother of the Muses” has at its centre a visit to the care home near Toronto where the poet’s father in law lived out his final days. The poem explores both individual and collective memory. The relevance of historical memory as this shapes individual lives is conveyed by the poet’s awareness of the catastrophes of the 20th century. Specifically, the bombing of Dresden threads through the poem. On the one hand, there is a desire to forget these horrors, and on the other, a duty to remember unless they are repeated. This tension between wishing to forget and having to remember is captured in the description of holocaust denier Ernst Zundel (stanza 29).
Harrison (1992) is concerned with the collective amnesia in which we all participate. To some extent, we all have to forget in order to carry on, and yet we must also learn how to remember.
In the final lines, the poet admits defeat in his own attempts to recall ancient Greek but achieves a certain affirmation of life and love:
…… Damn! I forget,
but remembering your dad, I’m celebrating
being in love, not too forgetful, yet. (Stanza 35)
Dementia then is a conceit (or extended metaphor) for considering the importance of historical memory, the place that creativity has in a world that has been blighted by the tragedies of Dresden and the holocaust, and (as in High Hopes and A Separation) the need to continue living and loving.
The use of dementia as a metaphor for the “state” of the world is also evident in a contemporary play “An evening with dementia” by Trevor T. Smith (Smith, 2010). The play brings the experiences of a vulnerable and marginalized older man to centre stage.
The protagonist is irreverent and the play opens with him proclaiming:
If you sit rather still, and say very little no one can tell whether you are suffering from Dementia or not. No. They can’t tell. Not even the most experienced physician. . . . I don’t suffer from Dementia. . . . I may have it but I don’t suffer from it. I don’t accept suffering.
An Evening With Dementia (Opening lines 1–6)
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The idea that an older man can hide his dementia by sitting still is compelling. It invites us to question our gaze as this is leveled at people with dementia. The insistent coupling of dementia with suffering is also acutely questioned. Indeed if, as the protagonist notes, we don’t “accept suffering,” our conceptualization of and relationship to dementia might profoundly alter (Killick & Craig, 2012). The possibility that somebody with dementia might be playful about the condition and that we can dare to approach it with humor is central to this play.
The gloriously irreverent protagonist talks confidingly about managing life with dementia:
But my trick is to pretend to be slightly deaf, which isn’t much of a trick because I am, and then to give answers to the questions that are not entirely relevant but will do. For instance: “Who is the president of the United States of America?” Answer: “I do like his wife.” . . . I’m quite safe because there’s never been a president of the United States of America who hasn’t had a well-preserved, hair-lacquered woman.
An Evening With Dementia (p. 2 lines 1422)
The humor of these subversive “tricks” relaxes the audience and encourages laughter. Indeed, laughter works as an emollient throughout the play. It is also in these lines that the outer world (America) is first mentioned. The protagonist is demonstrating his awareness of the world beyond himself and locating his dementia within a much wider context.
As “An evening with dementia” develops, the possible relationship and parallels between the dementia that the older character is living with (dementia as an internal condition) and the madness of the world that we all live in are drawn out:
And I’m suffering from Dementia, am I? It’s everywhere. It is a demented society. Everyone is terrified. We’ve all forgotten something. We’ve forgotten the most important thing. We’ve lost the memory of our humanity.
An Evening With Dementia (p. 7)
The premise of the play is to demonstrate the similarities between the way in which we all live, (in a demented society), and the ways in which someone with dementia negotiates the world. The play insists on the “moral solidarity” (Sabat, 2001, p. 340) that exists between us all, our shared humanity, and the need to remember this. Our memories are all threatened by a collective forgetfulness as the protagonist states: “We’ve lost the memory of our humanity.”
The play entices us to engage with an older man who is living with dementia and also forces the audience to consider the madness that permeates the world in which we live. Dementia is depicted as a condition that afflicts us all:
So we are all suffering from Dementia. It’s everywhere. All I’ve done is caught a bit of it, that’s all. Dementia is in the air. . . . It has been infiltrated into the air by government after government after government. They don’t want us to think anymore. . . . Our minds have been restricted to tick boxes. . . . Love—is just common sense. Perhaps common sense is the bit of us that is made in the image of God. I can’t think of any other bit of me that is.
An Evening With Dementia (p. 8)
At this point, the extent to which dementia is also a metaphor for our broken society is made explicit. A person who has dementia is only separate from the rest of us by virtue of a medical diagnosis. Dementia is the inevitable consequence of the extreme world in which we live, one in which the relentless acquisition of cognitive skills is valued over compassion.
The playwright is also concerned about the denigration of thinking in our society, where “facts” are gathered on the basis of tick boxes and where the innate common sense knowledge that we all have (like love) is disregarded. This play insinuates that society is horrified by dementia because at a deep level it is part of who we are, and it therefore brings us frighteningly close to the limits of our humanity. However, the play also suggests that it is by empathizing with the most vulnerable among us that we might remember who we are; in this sense, engaging with people living with dementia may even represent the possibility of redemption.
The visceral connection between a demented world and the condition dementia is evident in other contemporary accounts. Schultz (2008) in “Dementia Blog” links the U.S. political context with the processes of her mother’s dementia. In the “Fore and after word,” Schultz notes that the “. . . the (Bush) administration’s uses of language seemed, to this reader, demented.” (Schultz, 2008, p. 7). As in Smith’s play, dementia can best be understood as a general sickness, it is an unequivocal metaphor for a decay that is societal. As Schultz charts some of the moments that mark her mother’s life with dementia (this blog is published as it would appear online: backwards. It thus mimics the processes of memory and forgetting both in dementia but also at a collective, historical level. As the author herself comments: The confusions offered by the form are similar [or at least apt metaphors] to the confusions of dementia [Schultz, 2008, p. 7]), she also records key events in the unfolding invasion of Iraq and subsequent war on terror. The blog combines self-consciousness with a political consciousness and is simultaneously entirely personal and lyrical. One entry reads: “—The USA is more nuts than I am” (Schultz, 2008, p. 46).
Dementia as it affects an individual is less frightening than the excesses that the author observes during the war in Iraq. Throughout the blog, there is an uncertainty about who is saying what. This uncertainty adds to a sense of the disorientations that dementia involves, which reflect the confusions about what is actually happening in the war that is being waged. There is a similar lack of logic to both events, and in the end, we must rely on our feelings.
The deliberate obfuscations of language that are routinely used by politicians are paralleled with the erosion of language that dementia often entails. Schultz successfully demonstrates the ways in which we continually use language to contain experiences that are unbearable:
So that this figure is not metaphor, or simile. This figure is not metonymy. . . . Metaphor creates: this figure makes new what has fallen apart.
Schultz, 2008, p. 121
The limits to which language is pushed in the face of attempting to describe war or dementia are laid bare here. The creative role of metaphor is touched on and the impulse to hold things together that have fallen apart—which is perhaps one of the roles that metaphor fulfils. Certainly, the central importance of language in the creation of social realities is touched on. The blog exposes the extent to which our lives are fragmentary, whether we are living with dementia, and the illusion of coherence in the political stories that we are continually told (the fragmentary nature of narratives for people with dementia is touched on by Randall [2012]):
She says my life sounds fragmentary. I say fragments must be set down to see where their edges meet.
Schultz, 2008, p. 26
Concluding Thoughts and Questions
This article has investigated some of the metaphors that shape our collective understanding about dementia. These metaphors and the stories they animate become subconsciously ingested and inform how we feel about dementia and how we interact with people with dementia. Metaphors have a dual relevance when considering dementia because they are innate to linguistic expression and they also influence the ways in which our thoughts are patterned.
A critical examination of some of the metaphors associated with dementia has demonstrated the problematic consequences of popular discursive practices that associate dementia and later life with disaster. Medical and scientific discourses also tend to conflate dementia with crisis. Analyzing some of the cultural scripts about dementia and AD helps to reveal the underlying assumptions that infuse the political, social, and medical narratives that are told about these conditions. A close analysis of these stories may also help to educate the dementia care workforce by encouraging questions about the dominant stereotypes of people living with dementia (a study at the University of East Anglia [2012–2013] is investigating ways of educating care home staff about dementia by examining representations of the condition in novels, poems, and films).
These stories and stereotypes insistently distance us (without dementia) from them (with dementia) and may contribute to the feelings of isolation and stigma that those living with the conditions often express. Understanding the wider social stories that condition our responses toward those with dementia is a key way of ensuring that negative attitudes and practices are questioned rather than accepted. It is important to note that people with dementia are increasingly speaking for themselves. These personal accounts provide us with narratives that challenge the persistent association of dementia with decline and fall (as epitomized in many mainstream biopics). These individual memoirs also contribute to new perspectives on what the experience of living with dementia may entail.
In addition, this article considers the way in which dementia itself has become a metaphor. This is demonstrated through reference to diverse art forms that juxtapose dementia with the conditions of postmodern capitalist life, particularly, the historical amnesia of this epoch. In these narratives, dementia is not something to be looked at in a forensic or distanced way. Rather, it is an inherent part of who we all are; just as Prospero in “The Tempest” is forced to admit: “. . . this thing of darkness I/Acknowledge mine.” (Act 5, sc.1 267–276). Dementia in these accounts becomes a metaphor not only for the way society can disintegrate but also as a lens through which we might be able to see more clearly. After all, to tell stories about dementia and those who live with it, is also to reveal who we really are.
Above all, dementia must be understood as it is contextual and diachronic. Those who research dementia and those who work with people living with dementia may benefit from considering the powerful sway of the wider cultural narratives in which they are inscribed.
Acknowledgments
I am indebted to the work of Dr. Claire Hilton, a consultant old age psychiatrist whose paper on metaphor and simile in psychogeriatrics has been extremely helpful and to a paper by Professor Cohen-Shalev on the representation of Alzheimer’s Disease in film. These papers are both awaiting publication. I have also benefitted from the critical insights of Professor David Jolley. An early version of this article was presented at the British Society of Gerontology (BSG) annual conference in July 2012. Finally, the anonymous reviewers of this article provided crucial clarifications and direction.