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Abstract

This article describes an ongoing interdisciplinary research study1 with community-dwelling people living with dementia. The article focuses on one person living with dementia, her family and support group. Seven people were interviewed and their stories woven into one narrative. Our interest is in her self-identity, which we explore through a participatory story-telling approach. In gathering stories with all people who are significant in her life we have observed that what is driving the stories is an ethical imperative that is shared across her social network. We have described this as an imperative to `curate' her self-identity. `Curation' combines telling `about', `for' and potentially `with' the person living with dementia in interactions which reproduce and reconfirm her self-identity. We propose that the notion of curation offers a way in which people, research participants, significant others and health care professionals, can think differently about living with dementia. In particular, we argue that curation enables the person to be acknowledged in interaction as an individual with a coherent, evolving identity which spans past, present and future.

Keywords

dementia identity narrative interaction social network participatory research

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References

Butler, J. (1990). Gender trouble: Feminism and the subversion of identity. London: Routledge.

Coupland, N. , Nussbaum, J. , & Grossman, A. (1993). Introduction: Discourse, selfhood and the lifespan . In N. Coupland & J. Nussbaum (Eds.), Discourse and lifespan identity (pp. x—xxvii). Newbury Park, CA: SAGE.

Fairclough, N. (1985). Critical and descriptive goals in discourse analysis . Journal of Pragmatics, 9, 739—763.

Georgakopoulou, A. , & Goutsos, D. (2000). Revisiting discourse boundaries: The narrative and non-narrative modes. Text, 20(1), 63—82.

Goffman, E. (1959). The presentation of self in everyday life. New York: Doubleday Anchor.

Goffman, E. (1981). Forms of talk. Philadelphia : University of Pennsylvania Press.

Golander, H. , & Raz, A. (1996). The mask of dementia: Images of `demented residents' in a nursing ward. Ageing and Society, 16, 269—285.

Hadden, S. , & Lester, M. (1978). Talking identity: The production of `self ' in interactions. Human Studies, 1, 331—356.

Hall, C. , Sarangi, S. , & Slembrouck, S. (1997). Moral construction in social work discourse. In B-L. Gunnarsson , P. Linell & B. Nordberg (Eds.), The construction of professional discourse (pp. 265—291). London: Longman.

10.

Kitwood, T. (1990). The dialectics of dementia: With particular references to Alzheimer's disease. Ageing and Society, 10, 177—196.

11.

Kitwood, T. , & Bredin, K. (1992). Towards a theory of dementia care: Personhood and well-being. Ageing and Society, 12, 269—287.

12.

Koch, T. & Crichton, J. (in press). Living with dementia: Innovative methodological approaches toward understanding. In M. Nolan , E. Hanson , G. Grant. , & J. Keady (Eds.) User participation research in health and social care: Voices, values and evaluation. Open University Press/McGraw Hill.

13.

Koch, T. , & Kralik, D. (2006). Participatory action research in health care. Melbourne: Blackwell Science.

14.

Mead, G. (1934). Self and society. Chicago, IL: Chicago University Press.

15.

Mills, M. , & Coleman, P. (1994). Nostalgic memories in dementia: A case study. International Journal of Aging and Human Development, 38(3), 203—219.

16.

Nussbaum, J. (1991). Communication, language and the institutionalised elderly. Ageing and Society, 11, 149—165.

17.

Ochs, E. , & Taylor, C. (1992). Family narrative as political activity. Discourse & Society, 3(3), 301—340.

18.

Ramanathan-Abbott, V. (1994). Interactional differences in Alzheimer's discourse: An examination of AD speech across two audiences. Language in Society, 23, 31—58.

19.

Ricoeur, P. (1984). Time and narrative (K. Mclaughlin, & D. Pellauer, Trans. Vol. 1). Chicago, IL: University of Chicago Press. (Original work published 1983.)

20.

Ricoeur, P. (1985). Time and narrative (K. Mclaughlin & D. Pellauer, Trans. Vol. 2). Chicago, IL: University of Chicago Press. (Original work published 1984.)

21.

Ricoeur, P. (1988). Time and narrative (K. Mclaughlin & D. Pellauer, Trans. Vol. 3). Chicago, IL: University of Chicago Press. (Original work published 1985.)

22.

Ricoeur, P. (1992). Oneself as another (K. Blamey, Trans.). Chicago, IL: University of Chicago Press. (Original work published 1990.)

23.

Sabat, S. , & Harre, R. (1992). The construction and deconstruction of self in Alzheimer's disease. Ageing and Society, 12, 443—461.

24.

Sacks, H. (1995). Lectures on conversation. Oxford: Blackwell.

25.

Schiffrin, D. (1990). The management of a cooperative self in argument: The role of opinions and stories. In A. Grimshaw (Ed.), Conflict talk (pp. 241—259). Cambridge : Cambridge University Press.

26.

Shotter, J. (1993). Conversational realities: Constructing life through language. Newbury Park, CA: SAGE .

27.

Small, J. , Geldart, K. , Gutman, G. , & Scott, M. (1998). The discourse of self in dementia. Ageing and Society, 18, 291—316.

28.

Thornborrow, J. , & Coates, J. (Eds.). (2005). The sociolinguistics of narrative. New York: John Benjamins .