Alzheimer's Disease in Contemporary Literature and Culture

Lead Research Organisation: Manchester Metropolitan University
Department Name: English

Abstract

This research explores the ways in which Alzheimer's Disease and other related forms of dementia (for instance, vascular dementia and Huntington's Disease) are represented in a range of recent novels, poems, plays, and forms of life writing or 'pathography' (illness narratives by those with the disease or by members of their family/carers). My chosen texts include: Michael Ignatieff's Scar Tissue (1993), John Bayley's Iris (1998) and Iris and the Friends (1999), Linda Grant's, Remind Me Who I am Again (1998), Ian McEwan's novels Atonement (2001) and Saturday (2005); Chuck Palahniuk's Choke (2001), Tony Harrison's Black Daisies for the Bride (1993).

Current research on Alzheimer's disease and related dementias is largely confined to medical and related disciplines, including psychological and sociological accounts of aging, dying, death and grief, and the increasingly controversial field of bioethics. Yet the growing frequency with which Alzheimer's disease appears in imaginative literature and life writing underlines the importance of engaging with it from a literary critical perspective. The study argues that imaginative literature and forms of life writing have a specific role to play in relation to our understanding of the ethical dilemmas raised by these diseases, and to an understanding of both the individual and the cultural dimensions of illness, disease and dying. Through a close analysis of narrative discourse, metaphor and literary techniques, this study considers the specific ways in which literary, biographical and autobiographical constructions of Alzheimer's disease (and related forms of dementia) raise and shape ethical debate about what it means to be human, and how we conceptualise the limits of human subjectivity; particularly the point at which writers construct a boundary between selfhood and its apparent eradication in an insidious, dementing illness such as Alzheimer's. It also considers the ways in which writers construe the relationship between the individual illness experience and wider cultural co-ordinates, particularly the ways in which the effects of Alzheimer's disease impact upon the production and reproduction of cultural memory, practices of cultural memorialisation and notions of cultural heritage, cultural belonging and cultural dislocation or 'forgetting'.

The research makes an argument for the significance of literary form and literary language in encapsulating the experiences of illness and dying with a complexity that is often lacking in standard bio-ethical case studies and demonstrates that literary representations of these diseases are not simply of reflective of prevailing medical and cultural discourses around illness, dying and death, but have a constitutive role to play in shaping our understanding of and responses to these realities. Its aim is further to develop the dialogue between various disciplinary fields; bioethics, medical humanities, the cognitive sciences, cultural theory, and literary criticism and to contribute to subject-specific and inter-disciplinary knowledge about the social and cultural meanings of diseases such as Alzheimer's.

Publications

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Burke L (2012) Genetics at the Scene of the Crime DeCODING Tainted Blood in Journal of Literary & Cultural Disability Studies

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Burke L (2008) Introduction: Thinking about Cognitive Impairment in Journal of Literary & Cultural Disability Studies

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Burke L (2009) Book Reviews in Journal of Literary & Cultural Disability Studies

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Burke L (2008) 'The Country of My Disease': Genes and Genealogy in Alzheimer's life-writing in Journal of Literary & Cultural Disability Studies

 
Title Uk Disability Film Festival Day (Manchester Cornerhouse Cinema), December 3rd 2010 
Description On the basis of my research in this field, I curated and produced discussion materials for the Manchester contribution to the first UK Disability Film Festival organised nationally by Paul Darke, Outside Centre Arts, Wolverhampton. 
Type Of Art Film/Video/Animation 
 
Description This project explores the representation of the "Alzheimer's epidemic" in contemporary imaginative literature and lifewriting. Through a close reading of a range of texts, the research considers the effects of the biomedicalisation of dementia upon perceptions of personhood, familial/interpersonal relationships, family heritage and concepts such as care and dependency. It makes a case for the ethical significance of imaginative literature and lifewriting in producing new ways of thinking about dementia and its social and emotional consequences.
Exploitation Route This research explores the significance of cultural representations of dementia in shaping perceptions of the condition and its effects and in mediating its lived experience. It introduces and offers readings of novels, poems, and auto/biographical works that explore 'Alzheimer's disease' in a variety of ways and therefore provides its readers with a range of different ways in which they might think about dementia and its meanings. This is to offer an alternative to the dominant view of dementia as societal burden or familial tragedy and to challenge the dominance of utilitarian models that reduce people's lives to a cost/benefit analysis. The research contributes to person-centred models of dementia care and is thus of use and interest to the general public, health professionals and carers in this field.
Sectors Communities and Social Services/Policy,Education,Healthcare

 
Description Creative Ages theatre project: Small Things Creative Projects 
Organisation Small Things: Creativity, Community, Participation
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution I have been invited to do the research, development and evaluation for a creative theatre project based around Shakespeare's Tempest but developed by and for people with dementia. The project is led by Liz Postlethwaite of Small Things (http://smallthings.org.uk) and is currently in the planning stages and subject to a preliminary bid to the Arts Council UK to support the planning stages. The project also involved academic support from Dr Hannah Zeilig of London College of Fashion as part of ongoing research there on style, fashion, ageing and dementia.
Start Year 2013
 
Description Alzheimer's Culture: Critical Disability Studies 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Presented in the 'Ethical Issues in HSS Research' strand of the Institute of Humanities and Social Science Annual Research programme at Manchester Metropolitan University, Feburary 4th 2013

This presentation was part of the Institute of Humanities and Social Sciences Research Annual Research Programme which is open to the general public. It was recorded and is available to download as an audio file from the MMU website. It has therefore reached a much bigger and wider audience worldwide than simply those who attended the presentation itself
Year(s) Of Engagement Activity 2013
URL http://www.hssr.mmu.ac.uk/2013/02/06/alzheimers-culture-post-event-report-slides-and-audio-file/
 
Description Alzheimer's Disease: Personhood, Bare Life and First Person Testimony 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach International
Primary Audience Participants in your research and patient groups
Results and Impact Keynote address at the inaugural conference of the Cultural Disability Studies Research Network: Developing a Cultural Disability Studies, Saturday 26th and Sunday 27th May 2007, Liverpool John Moores University

The presentation explored the ethical significance of writing by people with dementia. It is available to download for free from: http://www.cdsrn.org.uk/ICP.html
Year(s) Of Engagement Activity 2007
 
Description Care and Dependency: Keywords in Disability Culture or Why Language Matters 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach National
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Keynote address at Scottish Medical Humanities Research Network - it sparked a lively discussion between the medical professionals and audience members who attended.

After my talk I was invited to contribute to the Edinburgh Handbook of the Critical Medical Humanities
Year(s) Of Engagement Activity 2013
 
Description Oneself as Another: Inter-subjectivity and Ethics in Alzheimer's Life Writing 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact I was invited to present a substantial paper (8000 words) at a symposium, Narrative(s) and The Shaping of Identity, at the University of Navarra in Pamplona, 26-27 October, 2012. This paper explored the significance of an engagement with Alzheimer's lifewriting to our understanding of the concept of intersubjectivity and its place within the personhood movement in dementia studies. The paper is due to be published in Narrative Works (Autumn/Winter 2014)

This event offered an important opportunity to share the outcomes of my research with scholars working on various aspects of narrative, emotion and cognition. The papers have been revised for publication in 2014.
Year(s) Of Engagement Activity 2012
 
Description Plenary/Round table discussion: The Future of the Medical Humanities 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact invited participant at roundtable discussion on the future of the medical humanities: Postgraduate conference on Human Flourishing, University of Durham, Centre for Medical Humanities - this sparked lively discussion in the room and on twitter

further invitations to work with the CMH at Durham
Year(s) Of Engagement Activity 2013
 
Description Social Care in Literature, BBC Radio 4, November 1st 2008 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact I was an invited contributor to the BBC Radio 4 Social Care series, 2008. I contributed to a section of You And Yours on social care in literature.

The audio recording was archived and also made available on iplayer.
Year(s) Of Engagement Activity 2008
 
Description Symbiosis and Subjectivity: Literary Representations of Disability and Social Care 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact Hour long Presentation at Theorising Culture and Disability: Interdisciplinary Dialogues, satellite event at the annual conference of the Research institute of Health and Social Science at Manchester Metropolitan University, 3rd July 2008. I co wrote this presentation with David Bolt (Liverpool Hope) and presented it on behalf of both of us.

This presentation was to a national audience of academics and postgraduates working in the interdisciplinary field of disability studies. It set out to explore the contribution of Literary Studies to our understanding of the meanings of care and dependenc
Year(s) Of Engagement Activity 2008
 
Description The Matter of Style: Narrative Discourse and Bioethical debate 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Invited Speaker at Mental Health in Higher Education (MHHE) event at The University of Keele, 19th May 2009. This presentation explored two bioethical responses to dementia and the significance of narrative style to the shaping and evaluation of the problem of personhood at the limits of life.

This event was open to interested members of the public, professionals working in the field of mental health, postgraduate students and academics/researchers in the medical humanities. It provided the opportunity to discuss the relationship between the ar
Year(s) Of Engagement Activity 2009
 
Description The Semantics of Care and Dependency 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach National
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Invited speaker at Transforming Bodies: New Directions in Medical

Humanities and Cultural Disability: Ageing, held at the University of Leeds (funded by the Wellcome Trust). This hour long paper explored the complex meanings of care and dependency in contemporary cultural discourse.

This presentation sought to develop an interdisciplinary dialogue about the meanings of care and dependency through the analysis of a short film featuring a character with dementia (initially shown at the first UK Disability Film Festival, 03/12/10). After my paper, I received a number of requests for copies of my presentation and invitations to talk about my research to other audiences.
Year(s) Of Engagement Activity 2011
 
Description Writing at the limits of life: the ethical dimensions of Alzheimer's life writing 
Form Of Engagement Activity Scientific meeting (conference/symposium etc.)
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Paper given at 7th Biennial International Auto/Biography Association Conference, University of Sussex, 28th June-1st July 2010

After this talk I was invited to be a keynote speaker at The University of Pamplona
Year(s) Of Engagement Activity 2010