Open Access
OBM Geriatrics
Communication
Making Sense of Senselessness: Contemporary Literary Commentaries
on Dementia
Michael Chapman 1, 2, *, Jennifer Philip 3, 4, 5, Paul Komesaroff 6
1. Department of Palliative Care, The Canberra Hospital, Canberra, ACT, Australia; E-Mails:
michael.chapman@anu.edu.au; michael.chapman@act.gov.au
2. Australian National University Medical School, Canberra, ACT, Australia
3. Melbourne University Department of Medicine, Parkville, Australia; E-Mail:
jphilip@unimelb.edu.au
4. St Vincent’s Hospital Department of Palliative Care, Fitzroy, Australia
5. Royal Melbourne Hospital, Parkville, Australia
6. Faculty of Medicine, Nursing and Health Sciences, Monash University, Australia; E-Mail:
paul.komesaroff@monash.edu
* Correspondence:
Michael
michael.chapman@act.gov.au
Chapman;
E-Mails:
michael.chapman@anu.edu.au;
Academic Editor: Michael Fossel
OBM Geriatrics
2019, volume 3, issue 2
doi:10.21926/obm.geriatr.1902056
Received: December 20, 2018
Accepted: June 12, 2019
Published: June 17, 2019
Abstract
Alzheimer’s Disease is increasingly seen as the major health problem in developed countries
supplanting cancer and heart disease. The terror with which we respond to dementia, is
grounded in a view of dementia as a monstrous descent, ambushing our healthy ageing
through an incursion of pathology. The pervasiveness of this view can mean that other
perspectives and even the views of those most touched by the challenges of dementia
remain unheard.
Part of the cultural conversation around dementia is informed by contemporary literature.
Novels such as Still Alice, The Corrections, The Madonnas of Leningrad and Tinkers include
vivid images of the dementia journey. They provide a variety of responses to the disruptions
of this illness, as well as the possibility of finding meaning within the undeniable losses of
© 2019 by the author. This is an open access article distributed under the
conditions of the Creative Commons by Attribution License, which permits
unrestricted use, distribution, and reproduction in any medium or format,
provided the original work is correctly cited.
OBM Geriatrics 2019; 3(2), doi:10.21926/obm.geriatr.1902056
dementia. These works and others like them extend the dialogue around the experience of
dementia beyond the convenience of simplistic caricatures of the people affected by
dementia. Engaging with these perspectives will assist clinicians’ understanding of the
deeper implications of dementia for us all.
Keywords
Dementia; ageing; cultural studies; literature
Years into the battle against cancer, heart disease and diabetes another affliction is now
stalking us. This is not a novel pandemic infection but something more terrible and more insidious,
seemingly poised to consume all of us in our old age. The spectre of Alzheimer’s Disease is the
new fear that has come to haunt modern societies, threatening to undermine the improvements
in life expectancies once proudly proclaimed as the crowning triumph of medical science.
Wherever populations are ageing, the prevalence of dementia increases sharply [1]. This is not
limited to rich countries: wherever you are, ageing is inseparable from diminishing capacity, failing
memory, lost autonomy and disintegrating personhood. For many older people, the menace of
dementia hangs as a dark shadow, its presence constantly suggested in the ordinary slips and
lapses of daily life. The sense of threat is intensified by a popular press replete with stories of
almost unmitigated pessimism—of hopelessness, decay and isolation, where the expression
“Alzheimer’s Disease” is automatically linked to the words “tragic”, or “cruel”. Indeed, dementia is
often presented not as an illness but as a descent into a terrifying, subhuman nether world, a
continuing living death [2].
It may come as a surprise that this bleak image of dementia is a relatively recent construction.
Representations of both ageing and cognitive decline have evolved rapidly over the last few years
[3-5]. Here, the roles of television, the Internet, film and social media are obvious; the influence of
the subtle infiltration of language and the reshaping of the signs we employ in ordinary cultural
life might not be so apparent. And the consequences for the deep lifeworld experiences for older
people and their loved ones remain largely unknown.
The changes in the cultural representations of dementia and the great fluxes of meaning and
hope generated by them have also become a focus of recent literary works. Of these,
contributions from developed countries, particularly the United States, warrant attention as they
arise within the milieu of this region’s significant cultural impact on responses to dementia over
the last four decades [6]. In this review examples of literature from the United States, chosen due
to their popularity, critical acclaim, influence and the nuanced interpretations enabled by their
descriptions of the dementia experience will be discussed and supplemented by sources from
other developed countries. More than academic theorising these works illustrate a process of
exploring and mapping the social and conceptual transformations signified by the new force of
dementia and of seeking out novel narrative forms that can make sense of them. This process
might help clarify not only what it is about the contemporary context of ageing that terrifies us but
how we can start to come to terms with it.
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1. Images of Dementia
A major task of some recent works of fiction is how to talk about the losses associated with
dementia. Dementia might well be a “cruel” “enemy”, but this is not always the whole story, as
shown by Lisa Genova’s popular novel Still Alice. Alice is a young mother and professor of
neuropsychology who chronicles systematically her experiences from the shocking first
manifestations of her illness. Her story is punctuated by progressive losses, and endured with
varying degrees of resilience. Early on Alice laments pathetically against the monstrous injustice of
the disease [7]. She wishes hopelessly for a condition with a less complicated medical narrative,
such as cancer. However, dementia asserts itself as the enemy that cannot be fought: it is rather
an overwhelming natural force, a beast, a hunting “predator” with “no weapons that could slay it”
[7]. Later in the novel, Alice returns to her imagery of the elemental power that is now not stalking
but enveloping, drowning her. Dementia becomes the “unstoppable, ferocious, destructive” force
of the ocean dragging the self away into its depths.
In Jonathan Franzen’s book, The Corrections, the imagery around the dementia that is
progressively taking over the proud and difficult patriarch, Al, has a more furtive and elusive force.
It is a darkness that snatches at him as he winds his way through a forest of words and actions, a
“sinister decay” that steals his bearings [8].
This view of dementia as a tragic, monstrous descent, however, is not universal. In Debra
Dean’s The Madonnas of Leningrad Marina, the protagonist acquires increasing mystery for her
family as her decline progresses [9]. Family members encounter the weight of her words and
struggle to balance them against the assumed non-sense of a person living with dementia. Dean’s
heroine becomes immersed in a beautiful interplay of rich memories and the live, fresh world
around her. Marina’s dementia is pictured as an ephemeral openness that causes havoc in the
present but allows Marina to unearth meanings through a creative exploration of her past, and
ultimately a frail but transcendent self-discovery. Dean challenges us to search for a hidden beauty
and mystery within the delicate fragility of narratives of desolation.
Yet other works go even further, presenting dementia as a possible site for genuine
transformation. In Paul Harding’s Tinkers, Howard’s father fades from the world owing to his
dementia, or rather the world fades from him, becoming no more than his dream. Although no
longer solid, but insubstantial his presence endures in the “brief disturbances of shadows or light”
[10]. He seems to be made from “planets and wood, diamonds and orange peel” with the “iron in
(his) blood … once the blade of a Roman plough” [10]. Through this perplexing process, Howard’s
father’s illness becomes more than just a source of sad discomfort for his family; it is also a link to
the mysteries of time, and life’s fecund and fleeting inter-subjective connections.
2. Responding to Disruption
Recent fiction offers a richness of possible responses to the challenges arising for both the
persons with dementia and those around them. Al (The Corrections) sees himself as acquiring
different selves. He becomes at once a rational adult and a “panic-stricken” boy, “thoughtless”
and “crashing” around, searching for a clearing in the confusion [8]. It is this “rational” Al who, in
the book’s final stages, asks his son Chip to end his life. Chip’s pathetic refusal echoes Al’s failures
to act earlier, his clear wish for death triggered and ironically defeated by dementia’s decline.
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Meanwhile, Enid (Al’s wife) recognises that amidst the tempestuous changes of dementia Al
retains a core identifying trait: “(t)he one thing (Al) never forgot was how to refuse.” [8]. Dementia
for Franzen lies within the ecology of illness and complex relationships, but it is also tragic, in its
ironic status as an agent of uncorrectable change, ceaselessly dynamic yet obdurate and mute to
our desires.
“Correcting” dementia with suicide is also a theme in Still Alice. Alice wishes to die but stays her
hand early in the book buoyed by her professional and social worth. Later, self-negation gives way
to a recognition that the fundamental relevance of her experience extends beyond her ability to
remember it. For Alice, remembering gradually becomes less important than the present moment
of experience and connection with those around her and, while not sufficient for all, some of her
family are able to connect deeply with the vibrant, emotionally present person their mother has
become. While these portrayals continue to represent dementia as tragic, they suggest that it is
not limited to loss and devastation, that the person with dementia is not completely annulled and
denuded.
3. Finding Meaning in Loss
There are no more potent investigations into the possibility of finding meaning in dementia
than those conducted by people with the condition. An increasing variety of these are now
available as both as published works and periodic blogs. A forerunner to this tradition was the
dementia auto-narrative of Dianna McGowin. She describes visiting her home town to “touch
again the Diane … who had once been, before she was no more” [11]. McGowin describes her
unfolding response to the exquisite frailty of her memory as her story gradually transforms—
before her own eyes—into the story of a stranger. The connection to one kind of past fades; the
sheer possibility of an embodied voice, eerily perdures. A similar sense of the changing
relationship with self-experience is conveyed by Wendy Mitchell’s elegantly titled blog “Which me
am I today?” and book “Somebody I used to know” [12, 13]. Mitchell discovers that her
relationship with her sense of time is evolving. She feels that her past is lost to her and the
uncertainties of her future make it too confronting for comfort. Mitchell finds herself residing in a
present time, reflecting on the beauty and transience of her momentary experiences. Here her
observation that “… even as our memories fade, it’s not to (sic) late for new ones to be made.”
reminds us of the persistence of self-experience in dementia and with this the possibility of new
meaning and flourishing [12].
Dementia fiction exhorts us to give up the idea of an untouched person residing underneath
behind a sad veil [14]. It shows how dementia touches many beyond those with the diagnosis.
Often, it describes personal experiences – as in the cases of Genova and Franzen – thereby
endowing the works with a sense of deep authenticity. As testaments to the multiple ways the
illness affects the people it touches, and to our ability to make sense, even as darkness is closing in.
Literature written by those who care for those with dementia about their experiences reflects on
similar territory. The deep and existential challenge of this role is often juxtaposed with
revelations of joy, wonder, learning and hope. In the blog “Dementia Diaries: A Journey With
Dementia” Cassandra Jones speaks of her mum’s dementia as a new epoch in the lives of those
around her, everything else is “B.D” (before dementia) when hope was easy to find, but
nonetheless there is wonder, personal growth and joy within sharing this journey [15]. No-one
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OBM Geriatrics 2019; 3(2), doi:10.21926/obm.geriatr.1902056
denies the tragedy of dementia. What we are in the process of learning is how it can also take us
on a journey of exploration, renewal and growth, where fragile new possibilities can emerge as
the old ones wither away.
When we have moved beyond the caricature of the person with dementia as a monster,
drained of his or her moral content and personhood, there will still be a lot of work to do.
Literature can show us some things—and recognising that persons with dementia are changing
beings with rich experiences arising out of painful loss is an important insight. This perspective
resists the injudicious simplicity of reducing dementia and those with the diagnosis to
dichotomous notions of independence and dependence, illness and non-illness, being and nonbeing or worth and non-worth. The benefits of this kind of engagement with dementia through
literature are not just inter-subjective. Accounts of those with the diagnosis and those who care
for them suggest enhancements in personal appreciation of social identity, interpersonal
connections, healing, and a variety of capacities from their involvement in telling their story [16,
17]. Stories compel both the teller and the audience [18]; exposure to dementia narratives that
subvert monophonic, assumed understandings of this experience as tonally wretched can be
politically and culturally influential [19] and enabling this interchange is an empowering act. The
biomedical discourse likewise has much to gain from a sensitivity to the multifarious, rich and
nuanced representations of the dementia experience in literature. Medicine while responsive to
culture, may recognise a need for deeper consideration of dementia than just a quest for a cure
arising from these perspectives.
How society will manage the increasing numbers of old, and cognitively impaired people, how
we handle our own transitions to the twilight worlds of insight built on the frailty from which no
traveller returns—this is an important ongoing work of culture and medicine, a process with no
easy solutions.
Author Contributions
All authors contributed equally to the planning and authorship of this manuscript.
Competing Interests
The authors have no potential conflicts of interest to disclose.
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