Abstract
The conclusion considers the changes both caregiver and patient life-writing have gone through over a thirty-year period. It identifies these changes in a multilanguage approach as, partly, conditioned by the rising number of individuals with dementia and the increasing societal presence of the disease. At the same time, these changes have propelled forward a patient-centred development. More and more patients aim actively to participate in shaping the mainstream dementia discourse, which especially involves shifting notions of selfhood. A deliberation on very recent third-person caregiver narratives, including a graphic novel and a film documentary, highlights that this evolution in patient perception has reached broader societal levels, and promises to shift values in healthcare planning and socio-economic as well as cultural approaches to the condition.
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Notes
- 1.
Geiger, Der alte König in seinem Exil, p. 175 (Geiger 2011).
- 2.
Hadas, Strange Relation, p. 38 (Hadas 2011).
- 3.
Donatella Di Pietrantonio, Mia madre è un fiume [My mother is a river] (Rome: Elliot Edizioni S. R. L., 2010) (Di Pietrantonio 2010); Sally Magnusson, Where Memories Go. Why Dementia Changes Everything (London: Two Roads, 2014) (Magnusson 2014); on Di Pietrantonio’s narrative, see also: Wilkinson, ‘Remembering forgetting’ (Wilkinson 2014).
- 4.
A recent analysis of fictional narratives addresses ‘contradictions and systemic violence of our current culture of care’; I have not discovered life-writing texts that admit to abuse in dementia care relationships, even though caregiver burnout becomes more and more prominent; see: Lucy Burke, ‘On (not) caring: tracing the meanings of care in the imaginative literature of the “Alzheimer’s epidemic”’, in The Edinburgh Companion to the Critical Medical Humanities, ed. by Anne Whitehead and Angela Woods (Edinburgh: Edinburgh University Press, 2016), pp. 596–610, p. 607 (Burke 2016).
- 5.
Sarah Leavitt, ‘Kaddish’, in Beyond Forgetting. Poetry and Prose about Alzheimer’s Disease, ed. by Holly J. Hughes (Kent: The Kent State University Press, 2009), pp. 167–168, p. 167 (Leavitt 2009).
- 6.
Sarah Leavitt, Tangles. A Story about Alzheimer’s, My Mother, and Me (London: Jonathan Cape, 2011), p. 7 (Leavitt 2011); all further references incorporated in the text.
- 7.
Pease and Pease, Body Language, e.g., p. 99 (Pease and Pease 2005).
- 8.
‘Reading guide. Tangles. Sarah Leavitt’, http://www.freehand-books.com/wp-content/uploads/2012/03/Tangles-Reading-Guide.pdf (accessed December 2016).
- 9.
Ian Williams, ‘Graphic medicine: how comics are revolutionizing the representation of illness’, Hektoen International. A Journal of Medical Humanities, 3 (2012), http://www.hektoeninternational.org/index.php?option=com_content&view=article&id=353:graphic-medicine&catid=93&Itemid=716 (accessed August 2016) (Williams 2012).
- 10.
Elizabeth Price, ‘Coming out to care: gay and lesbian carers’ experiences of dementia services’, Health and Social Care in the Community, 18 (2010), pp. 160–168, p. 167 (Price 2010); Angela M. Barbara, Sara A. Quandt and Roger T. Anderson, ‘Experiences of lesbians in the health care environment’, Women and Health, 34 (2001), pp. 45–62 (Barbara et al. 2001).
- 11.
Benjamin Fraser, Disability Studies and Spanish Culture. Films, Novels, the Comic and the Public Exhibition (Liverpool: Liverpool University Press, 2013), esp. Chap. 2, p. 39 (Fraser 2013).
- 12.
- 13.
David Sieveking, Vergiss Mein Nicht. Wie meine Mutter ihr Gedächtnis verlor und meine Eltern die Liebe neu entdeckten [Forget me not. How my mother lost her memory and my parents rediscovered their love] (Farbfilm Verleih, 2012); released 31 January 2013 (Sieveking 2012).
- 14.
Rainer Erlinger, ‘Vorgeführt im Verfall’ [Exhibited in decay], Süddeutsche Zeitung, 5 February 2013 (Erlinger 2013).
- 15.
‘Potsdamer Filmgespräch. Vergiss Mein Nicht’ [Potsdam film conversation. Forget me not], 19 March 2013, http://www.kreatives-brandenburg.de/veranstaltung/potsdamer-filmgesprach-vergiss-mein-nicht/ (accessed August 2016).
- 16.
Potsdam film conversation with the film and theatre director Andreas Dresen; available as bonus material on the DVD released by Farbfilm Home Entertainment (13:44; 05:26).
- 17.
Fraser similarly comments on the use of a specific narrative motif, namely a set of drawers, in the DVD menu and first screen image of a film based on a comic book; see: Fraser, Disability Studies and Spanish Culture, p. 59 (Fraser 2013).
- 18.
David Sieveking, Vergiss Mein Nicht. Wie meine Mutter ihr Gedächtnis verlor und ich meine Eltern neu entdeckte [Forget me not. How my mother lost her memory and I discovered my parents anew] (Freiburg im Breisgau: Herder, 2013) (Sieveking 2013); references incorporated in the text; released 9 January 2013.
- 19.
See also the conversation between David Sieveking and the film’s producer Martin Heisler in the context of the German film prize 2013, inter alia, about marketing issues; available as part of bonus material on the DVD released by Farbfilm Home Entertainment (7:05–7:41).
- 20.
Garrard et al., ‘The effects of very early Alzheimer’s disease’ (Garrard et al. 2005).
- 21.
Potsdam film conversation (04:24), see p. 124 fn. 16.
- 22.
Conference ‘Im Fokus: Menschen mit Demenz – Wenn Praxis und Forschung verbunden werden’ [In focus: people with dementia – when practice and research are being linked], University Heidelberg, 18 April 2013, http://www.nar.uni-heidelberg.de/veranstaltungen/kongress/archiv.html (accessed October 2016); the conference was organised in the framework of the graduate training programme ‘Demenz’ [dementia] aimed at ‘improving health care quality and structures’; Sieveking’s film and its discussion with the public – led by the programme’s initiators Konrad Beyreuther, molecular biologist, and Andreas Kruse, gerontologist – closed the symposium.
- 23.
- 24.
Burke, ‘Alzheimer’s disease’, p. 1 (Burke 2007).
- 25.
I am taking this term from Jeffrey Aronson, ‘Autopathography: the patient’s tale’ (Aronson 2000).
- 26.
Charon’s praise for Hadas’s narrative; see: Hadas, Strange Relation, p. i (Hadas 2011).
- 27.
James Olney, Metaphors of Self. The Meaning of Autobiography (Princeton: Princeton University Press, 1972), pp. 34–35 (Olney 1972).
- 28.
See also: Couser, Recovering Bodies, pp. 6, 14 (Couser 1997).
- 29.
These theoretical paradigms are anticipated to gain renewed relevance for the analysis of lived experience; see: Neil Vickers, ‘Illness narratives’, in A History of English Autobiography, ed. by Adam Smyth (New York: Cambridge University Press, 2016), pp. 388–401 (Vickers 2016).
- 30.
Zimmermann, ‘Alzheimer’s disease metaphors’ (Zimmermann forthcoming).
- 31.
Jens Brockmeier, Beyond the Archive. Memory, Narrative, and the Autobiographical Process (New York: Oxford University Press, 2015) (Brockmeier 2015).
- 32.
Nortin M. Hadler, Rethinking Aging. Growing Old and Living Well in an Overtreated Society (Chapel Hill: The University of North Carolina Press, 2011), p. 172 (Hadler 2011).
- 33.
See also: Hannah Zeilig, ‘The critical use of narrative and literature in gerontology’, International Journal of Ageing and Later Life, 6.2 (2011), pp. 7–37 (Zeilig 2011).
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Zimmermann, M. (2017). Conclusion. In: The Poetics and Politics of Alzheimer’s Disease Life-Writing. Palgrave Studies in Literature, Science and Medicine. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-319-44388-1_6
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