Dementia and Literature

Interdisciplinary Perspectives

Tess Maginess

• Publisher: Routledge
• Year: 2017
• ISBN:
  9781351798648
• Edition: 1
• Topic: Social Sciences
• Subtopic: Global Development Studies
• Index: Social Sciences

Dementia is an urgent global concern, often termed a widespread 'problem', 'tragedy' or 'burden' and a subject best addressed by health and social policy and practice. However, creative writers can offer powerful and imaginative insights into the experience of dementia across cultures and over time. This cross-disciplinary volume explores how engaging with dementia through its myriad literary representations can help to deepen and humanise attitudes to people living with the condition.

Offering and interrogating a wide array of perspectives about how dementia might be 'imagined', this book allows us to see how different ways of being can inflect one another. By drawing on the 'lived' experience of the individual unique person and their loved ones, literature can contribute to a deeper and more compassionate and more liberating attitude to a phenomenon that is both natural and unnatural. Novels, plays and stories reveal a rich panoply of responses ranging from the tragic to the comic, allowing us to understand that people with dementia often offer us models of humour, courage and resilience, and carers can also embody a range of responses from rigidity to compassion. Dementia and Literature problematises the subject of dementia, encouraging us all to question our own hegemonies critically and creatively.

Drawing on literary studies, cultural studies, education, clinical psychology, psychiatry, nursing and gerontology, this book is a fascinating contribution to the emerging area of the medical and health humanities. The book will be of interest to those living with dementia and their caregivers as well as to the academic community and policy makers.

1 Entering a new landscape

Dementia in literature

Ragna Aadlandsvik

Introduction

Who is this man?

Where does he come from? Where does he go to?

I’ve never seen him before.

He doesn’t belong to me.

(Killick, 2008, p. 22)

Dementia is the ultimate existential condition, where the individual is brought against the fundamental philosophical questions in the most stark manner possible: ‘Who am I? What makes for a person? How necessary is memory for identity?

(Killick, 2008, p. 5)

The word ‘dementia’ comes from Latin de mentis, meaning: out of mind. This condition causes a lot of suffering in a rapidly growing and longer living population. Individuals, families, communities and society as a whole are affected. The persons in question run a constant risk of alienation and outsidership, and they are extremely vulnerable. In this respect, we are all learners, as individuals and as a society. Dementia challenges our human capacity and personal and social values. While we are waiting for a breakthrough in medicine to cure this haunting disease, which often fosters drastic transformations of identity, it is evident that it needs to be studied from a variety of disciplines and perspectives. As it involves questions of what it ultimately means to be a human, insights from philosophy and art should be natural and necessary. The whole society needs to be enlightened on this question. Scientific knowledge must be completed by wisdom from other disciplines. Most people don’t read medical journals, but many people watch movies and read novels. Scientific knowledge is simply inadequate to deal with significant and existential issues. Fiction is a tool for exploring the world. The same can be said about science. Using fiction can be an expansion of what we do as researchers. My contribution, based on a background in education, is from the art of literature, and it addresses the most common dementia disease: Alzheimer’s. In the first part of the chapter, I argue for the relevance and importance of fiction, then I give some examples from my own work, and the last part is my analysis of a specific novel, We are not ourselves, by Matthew Thomas (2014).

What is literature’s contribution to the search for knowledge about dementia?

Illumination, extension and ethical awareness

Literature dealing with dementia issues illuminates a person’s inner world and outer behaviour in a way that may be useful for family, staff and other care givers, and not the least for society as a whole. It serves to open our eyes, ears, minds and hearts. We need to learn more about living with this condition, and in many ways this could be considered as an educational project. Throughout the ages many writers have contributed to enlighten us. Some of them could in some cases be said to have been teachers of the people, and inspiration for philosophers. ‘it sometimes seems to me that the whole of philosophy is only a meditation on Shakespeare’, says Levinas (1947, 1987, p. 72).

Literature dealing with questions of health can not only be used for enlightening the public, but also in the education of medical professionals. This has increased greatly in recent years. The argument is that novels may provide further insight into, for example, health psychology theories, particularly for teaching purposes. The students should learn that there are various ways of getting health-related knowledge beyond objective scientific rationality (Kaptein and Lyons, 2009).

Martha Nussbaum (1990) reminds us that all living is interpreting: all action requires seeing the world as something. No life is ‘raw’; throughout our living we are, in a sense, makers of fiction. But, in Nussbaum’s view, novels are different from life itself. She refers to Aristotle, saying:

We have never lived enough. Our experience is, without fiction, too confined and parochial. Literature extends it, making us reflect and feel about what might otherwise be too distant for feeling. The importance of this for both morals and politics cannot be underestimated.

(Nussbaum, 1990, p. 47)

The literary extension operates both horizontally and vertically. It makes us experience persons and problems that we have not met, and the experience can be deeper, sharper and more precise than what takes place in life. Moreover, we may avoid the personal anger or ‘the vulgar heat’ or the despair of our private story.

For Nussbaum (1990), the relationship between questions of morality, ethics and literature is important. We may learn more from people and situations in literature than from abstract rules and principles. Living together is the object of our ethical interest. Literature brings people together, readers and authors. It makes a particular sort of community (Nussbaum, 1990, p. 48). We need texts that are available to all of us and as we can talk about as friends. In this discussion, individual views are valued. Attention is drawn to each word, and we meet the events with more heightened awareness than sometimes in real life.

It is an ethical challenge to do research upon or with people living with dementia. We run a risk of invasion, exploitation and lack of respect. Literature’s anonymous nature makes the ethical considerations less complex than in real life. The ability to see is of special importance. ‘Writing is seeing’ is a wellknown and often quoted statement by Henrik Ibsen (1874, 1971, p. 391). Marcel Proust sees a literary text as an ‘optical instrument’ through which the reader becomes a reader of his or her own heart (Nussbaum, 1990, p. 47). We need new visions in learning about dementia, in the original sense of the word.

Form and content

These elements are often integral and inextricable. How something is said is part of what is said. Nussbaum (1990) claims that there is an organic connection between the form of the text and its content. A paraphrase in a different form and style will not express the same conception. Accordingly, when I try to retell a novel, as I do here, it inevitably becomes only a shadow. It becomes another story, in another voice. Style always makes a statement about what is important, and what is not. A novel and a medical article can discuss the same problem of dementia, but the outcome will be very different. Literature makes us see what is hidden, but knowable, and mysterious, and therefore not totally knowable in a direct way. Literature is based on the narrative dimension of knowledge and understanding. According to Paul Ricoeur, there is no clear disjunction between art, on the one hand, and life on the other or between stories and the events that the stories are supposed to describe (McEwan and Egan, 1995).

Stories: making sense of life with dementia

Stories sit in the backbone of man, and they are found in all cultures through all ages. Narrativity seems to be a basic human capacity. The ‘turn to narrative’ in the recent years represents a dramatic shift in the history of educational research (McEwan and Egan, 1996). All stories are created and the result of some kind of composition, edition and selection, in real life, and in art. A fictive story is an escape from reality – and at the same time it explores and interprets reality.

I have participated in a project where older people wrote short stories, both fictional and stories from their own life (Aadlandsvik, 2012). Inevitably in all texts the person’s own life became transparent. Oral stories were also elaborated and performed. In all cases the learners used literary devices which we taught them. A basic principle was to give the storytellers an audience; stories should be shared. The group can be the audience, as can the teachers. We were often two, or more. Guests from other parts of the nursing home could be invited. Sometimes, we arranged for older and younger people (in a project including a school), to exchange stories, and that could take place in a ‘literary cafe’. The aim was the development of mutual respect and understanding between the generations. In an educational context reciprocity is important in storytelling, both telling and receiving. To be ‘seen’ and ‘heard’ by others defines identity, and our identity is linked to the stories we live by and tell. We seem to ‘story’ our lives. Stories enable us to enter empathically into another’s life and being. We can imagine and feel the experience of the ‘other’.

In this sense, it serves as a means of inclusion, inviting the reader, listener, writer or teller as a companion along another’s journey. In the process we may find ourselves wiser, more receptive, more understanding, nurtured, and sometimes even healed.

(Witherell et al., 1995, p. 41)

It is almost impossible to imagine the transmission of moral values without a narrative dimension. Jesus taught by means of anecdotes and parables. ‘All narratives carry moral messages in one way or the other and images of the moral world’ (Goodson and Gill, 2011, p. 65). This includes fictional narratives. The greatest writers in history are moral teachers of the people. But good literature does not preach. It leaves an open space for the reader to judge for herself. This is very important from an educational point of view. Learning cannot take place without an element of activity on the side of the learner. We recreate the piece of art in our imagination. We have a sort of vicarious experience; in a novel the reader lives vicariously in a virtual world. A story doesn’t need to be factual to be ‘true’. Fiction is always taken from life, where else could it come from? According to Nussbaum (1990, p. 5) ‘certain truths about human life can only be fittingly and accurately stated in the language and forms characteristic of the narrative artist.’ So it could be said that narrative form, as other artistic modes of expressions, has epistemological value.

But as Ivor Goodson (Goodson and Gill, 2011) so often warns us, a narrative can both limit and liberate. We can be both imprisoned within a particular, ‘scripted’ narrative, or be freed by it. Accordingly, in both life and fiction we can be misled by ‘stories’ of dementia. So we always need to be critical to the different ‘scripts’ we are given, and always ask: Whose story is this? Applied on the representation of dementia in literature, relevant questions would be: Is this a stereotype and outdated picture? Is it stigmatising for the group in question? Does this ‘story’ contribute to liberation and reinterpretation of stereotyping metaphors?

The particular, the universal and the open-ended

At the same time, the particular case or situation illustrates something universal. A character in a novel on dementia has his or her unique personality and individual disease history, but has at the same time traits of all people suffering from, for example, Alzheimer’s. This is not different from real life. Good literature does not conclude, it enlightens us, opens new questions, and makes us wonder. Literature can take us to places, times and experiences which is difficult for us to have access to. Through imagination we accompany people as they are forced to enter new landscapes of existence, and sometimes we see it through the eyes of a poet. Literary genres are not absolute, and there is no point in keeping the borders ‘clean’. A poem can be epic, and prose can be very poetic.

Poetry and dementia

If dementia is an ultimate human condition, poetry is, in my view, the ultimate literary genre. If going into dementia is to enter a new landscape, it could be said that a good poem also takes us into a new, unexpected and surprising landscape of understanding. By its short, tight form, blank spaces and rhythm, it has a magic ability to create images and open up new, fresh ways of seeing. It was poetry with such qualities that first caught my interest when it comes to the question of dementia and literature. And I found it in my own language, Norwegian (Aadlandsvik, 2008).

Aase-Marie Nesse (1981), in her book Vinterhuset [The winter house], depicts a mother suffering from dementia. Nesse (1981) describes the winter house as a locked secret, with the key hanging on a star:

The one who is inside, will look out

but cannot

the one who is outside can look in

but will not …

you who enter this house

let all masks fall

along with all meanings about the world.

Here is a trace of Truth

see the human

transparently shining

nothing to hide anymore

nothing to lose.

(Nesse, 1981; trans. in Aadlandsv...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• Notes on contributors
• Foreword
• Acknowledgements
• Introduction
• 1 Entering a new landscape: dementia in literature
• 2 Dementia and symbiosis in Waiting for Godot
• 3 ‘Poor, bare fork’d animal’: the representation of dementia in King Lear
• 4 Representations of dementia in Arabic literature
• 5 Missing pieces: trauma, dementia and the ethics of reading in Elizabeth is missing
• 6 Personal identity and personhood: the role of fiction and biographical accounts in dementia
• 7 Language breakdown and the construction of meaning: linguistic frameworks for readings of dementia in literature
• 8 Beyond shadow and play: different representations of dementia in contemporary Scandinavian literature
• 9 Dementia in recent Indian fiction in English
• 10 Arts and healing: learning from dementia literature
• Index