Hostname: page-component-7c8c6479df-hgkh8 Total loading time: 0 Render date: 2024-03-29T02:00:58.930Z Has data issue: false hasContentIssue false

The narrative self in rural dementia: a case study from eastern Nova Scotia

Published online by Cambridge University Press:  06 March 2018

RILEY CHISHOLM*
Affiliation:
Department of Sociology, St. Francis Xavier University, Antigonish, Nova Scotia, Canada.
KATHERINE BISCHOPING
Affiliation:
Department of Sociology, York University, Toronto, Canada.
*
Address for correspondence: Riley Chisholm, Department of Sociology, 110C Annex Building, PO Box 5000, St. Francis Xavier University, Antigonish, Nova Scotia, B2 G 2W5, Canada E-mail: Rchishol@stfx.ca

Abstract

This analysis examines how the narrative self of a person with dementia is maintained by family members in a small rural Nova Scotian community. In the literature, the expectation is often that rurality is a condition of isolation, distance from family and limited health resources. However, drawing on three years of ethnographic and interviewing research with a large extended family whose patriarch, Alexander, is a person with dementia, we demonstrate how a community's rurality influences interpretations of dementia. In Alexander's rurality, of particular import are local definitions of belonging, which privilege intimate knowledge of local history, working as a farmer to shape the land, and being of Scottish descent and male. As family members find Alexander's belonging to come into question in their community, we show them to employ narratives in which he is valorised for continuing to uphold local values – of ‘usefulness’ and of ‘being the land’. We show how the family members must also revisit and revise these narratives when Alexander's belonging is further called into question outside the family setting and, specifically, at the local farmer's market, where Alexander is often no longer greeted by other marketgoers. The men and women of the family arrive at different interpretations of this development, with the women considering marketgoers to demean and dehumanise Alexander, while the men feel that the marketgoers are avoiding interactions that would embarrass him. Such disagreements reveal the ongoing emotional labour of creating narratives that lack closure, certainty and consensus, as well as ways in which gender and rurality operate intersectionally in the process of meaning-making.

Type
Article
Copyright
Copyright © Cambridge University Press 2018 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Adams, T. 2000. The discursive construction of identity by community psychiatric nurses and family members caring for people with dementia. Journal of Advanced Nursing, 32, 4, 791–8.Google Scholar
Ayres, L. 2000. Narratives of family caregiving: four story types. Research in Nursing & Health, 23, 6, 359–71.Google Scholar
Baldacchino, G. 2012. Come visit, but don't overstay: critiquing a welcoming society. International Journal of Culture, Tourism and Hospitality Research, 6, 2, 145–53.Google Scholar
Baldwin, C. 2008. Narrative, citizenship and dementia: the personal and the political. Journal of Aging Studies, 22, 3, 222–8.Google Scholar
Bamberg, M. and Georgakopoulou, A. 2008. Small stories as a new perspective in narrative and identity analysis. Text & Talk, 28, 3, 377–96.Google Scholar
Basting, A. D. 2003. Forget Memory: Creating Better Lives for People with Dementia. Johns Hopkins University Press, Baltimore, Maryland.Google Scholar
Bauman, Z. 1992. Morality, Immorality and Other Life Strategies. Stanford University Press, Stanford, California.Google Scholar
Beard, R. L. and Fox, P. J. 2008. Resisting social disenfranchisement: negotiating collective identities and everyday life with memory loss. Social Science & Medicine, 66, 7, 1509–20.Google Scholar
Berger, P. and Luckmann, T. 1966. The Social Construction of Reality: A Treatise in the Sociology of Knowledge. Anchor Books, New York.Google Scholar
Blackstock, K. L., Innes, A., Cox, S., Smith, A. and Mason, A. 2006. Living with dementia in rural and remote Scotland: diverse experiences of people with dementia and their carers. Journal of Rural Studies, 22, 2, 161–76.Google Scholar
Bury, M. 1982. Chronic illness as biographical disruption. Sociology of Health & Illness, 4, 2, 167–82.Google Scholar
Calasanti, T. and Bowen, M. E. 2006. Spousal caregiving and crossing gender boundaries: maintaining gendered identities. Journal of Aging Studies, 20, 3, 253–63.Google Scholar
Chandler, M., Lalonde, C. and Sokol, B. W. 2000. Continuities of selfhood in the face of radical developmental and cultural change. In Nucci, L., Sax, G. and Turiel, E. (eds), Culture, Thought and Development. Lawrence Erlbaum, Mahwah, New Jersey, 6584.Google Scholar
Clarke, C. L. and Bailey, C. 2016. Narrative citizenship, resilience and inclusion with dementia: on the inside or on the outside of physical and social places. Dementia, 15, 3, 434–52.Google Scholar
Cohen-Mansfield, J., Parpura-Gill, A. and Golander, H. 2006. Salience of self-identity roles in persons with dementia: differences in perceptions among elderly persons, family members and caregivers. Social Science & Medicine, 62, 3, 745–57.Google Scholar
Commachio, C. 1999. The Infinite Bonds of Family: Domesticity in Canada. 1850–1940. University of Toronto Press, TorontoGoogle Scholar
Cormack, P. 2008. ‘True stories’ of Canada: Tim Hortons and the branding of national identity. Cultural Sociology, 2, 3, 369–84.Google Scholar
Damme, M. J. and Ray-Degges, S. 2016. A qualitative study on home modification of rural caregivers for people with dementia. Journal of Housing for the Elderly, 30, 1, 88105.Google Scholar
DeLyser, D. 2001. ‘Do you really live here?’ Thoughts on insider research. Geographical Review, 91, 12, 441–53.Google Scholar
Dunham, C. C. and Cannon, J. H. 2008. ‘They're still in control enough to be in control’: paradox of power in dementia caregiving. Journal of Aging Studies, 22, 1, 4353.Google Scholar
Durkheim, É. [1895] 1982. The Rules of Sociological Method and Selected Texts on Sociology and its Method. Lukes, S. (ed.), Halls, W. D. (trans.). Free Press, New York.Google Scholar
Eustache, M., Laisney, M., Juskenaite, A., Letortu, O., Platel, H., Eustache, F. and Desgranges, B. 2013. Sense of identity in advanced Alzheimer's dementia: a cognitive dissociation between sameness and selfhood? Conscious Cognition, 22, 4, 1456–67.Google Scholar
Ezzy, D. 1998. Theorizing narrative identity. The Sociological Quarterly, 39, 2, 239–52.Google Scholar
Ezzy, D. 2000. Illness narratives: time, hope and HIV. Social Science & Medicine, 50, 5, 605–17.Google Scholar
Forsythe, D. 1999. ‘It's just a matter of Common Sense’: ethnography as invisible work’. Computer Supported Cooperative Work (CSCW), 8, 1/2, 127–45.Google Scholar
Foster, J. 2009. Insider research with family members who have a member living with rare cancer. International Journal of Qualitative Methods, 8, 4, 1626.Google Scholar
Frank, A. W. 1995. The Wounded Storyteller: Body, Illness, and Ethics. University of Chicago Press, Chicago.Google Scholar
Giles-Vernick, T. 2001. Lives, histories and sites of recollection. In White, L., Miescher, S. and Cohen, D. W. (eds), African Words, African Voices: Critical Practices in Oral History. Indiana University Press, Indianapolis, 194213.Google Scholar
Goffman, E. 1963. Stigma: Notes on the Management of Spoiled Identity. Simon and Schuster, New York.Google Scholar
Goffman, E. [1955] 2010. On face-work. In Lemert, C. (ed.), Social Theory: The Multicultural Readings. Westview Press, Philadelphia, 338–43.Google Scholar
Goldsteen, M., Abma, T., Oeseburg, B., Verkerk, M., Verhey, F. and Widdershoven, G. 2007. What is it to be a daughter? Identities under pressure in dementia care. Bioethics, 21, 1, 112.Google Scholar
Government of Nova Scotia, Department of Health and Wellness 2014. Toward Understanding – Informing Nova Scotia Dementia Strategy. Available online at http://novascotia.ca/dhw/dementia/Towards-Understanding-Informing-Nova-Scotias-Dementia-Strategy.pdf. Accessed January 23, 2017.Google Scholar
Green, L. J. and Green, D. R. 2009. Space, time, and story tracks: contemporary practices of topographic memory in the Palikur Territory of Arukwa, Amapá, Brazil. Ethnohistory, 56, 1, 163–85.Google Scholar
Hamilton, H. 2008. Narrative as snapshot: glimpses into the past in Alzheimer's discourse. Narrative Inquiry, 18, 1, 5382.Google Scholar
Harling Stalker, L. and Phyne, J. 2014. The social impact of out-migration: a case study from rural and small town Nova Scotia, Canada. Journal of Rural and Community Development, 9, 3, 203–26.Google Scholar
Harris, P. and Keady, J. 2009. Selfhood in younger onset dementia: transitions and testimonies. Aging and Mental Health, 13, 3, 437–44.Google Scholar
Herron, R. V. and Rosenberg, M. W. 2017. ‘Not there yet:’ examining community support from the perspective of people with dementia and their partners in care. Social Science & Medicine, 173, 81–7.Google Scholar
Hinder, S. and Greenhalgh, T. 2012. ‘This does my head in’: ethnographic study of self-management by people with diabetes. BMC Health Services Research, 12, 83, 116.Google Scholar
Hinton, W. L. and Levkoff, S. 1999. Constructing Alzheimer's: narratives of lost identities, confusion and loneliness in old age. Culture, Medicine and Psychiatry, 23, 4, 453–75.Google Scholar
Hydén, L.-C. and Örulv, L. 2009. Narrative and identity in Alzheimer's disease: a case study. Journal of Aging Studies, 23, 4, 205–14.Google Scholar
Irwin, K. 2006. Into the dark heart of ethnography: the lived ethics and inequality of intimate field relationships. Qualitative Sociology, 29, 2, 155–75.Google Scholar
Kaufman, A., Kosberg, J., Leeper, J. and Tang, M. 2010. Social support, caregiver burden, and life satisfaction in a sample of rural African American and white caregivers of older persons with dementia. Journal of Gerontological Social Work, 53, 3, 251–69.Google Scholar
Keefover, R., Rankin, E., Keyl, P., Wells, J., Martin, J. and Shaw, J. 1996. Dementing illnesses in rural populations: the need for research and challenges confronting investigators. Journal of Rural Research, 12, 3, 176–81.Google Scholar
Kelly, M. P. and Dickinson, H. 1997. The narrative self in autobiographical accounts of illness. The Sociological Review, 45, 2, 254–78.Google Scholar
Kitchen, P., Williams, A. and Chowhan, J. 2012. Sense of community belonging and health in Canada: a regional analysis. Social Indicators Research, 107, 1, 103–26.Google Scholar
Kitwood, T. 1997. Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham, UK.Google Scholar
Krupnik, I., Aporta, C., Gearheard, S., Laidler, G. J. and Holm, L. K. (eds) 2010. SIKU: Knowing Our Ice. Springer, Dordrecht, The Netherlands.Google Scholar
McKay, I. 1992. Tartanism triumphant: the construction of Scottishness in Nova Scotia, 1933–1954. Acadiensis, 21, 2, 547.Google Scholar
Mead, G. 1934. Mind, Self, and Society. Morris, C. (ed.). University of Chicago Press, Chicago.Google Scholar
Morgan, D. 1992. Discovering Men. Routledge, London.Google Scholar
Morgan, D., Semchuck, K., Stewart, N. and D'Arcy, C. 2002. Rural families caring for a relative with dementia: barriers to use of formal services. Social Science and Medicine, 55, 7, 1129–42.Google Scholar
Morgan-Trimmer, S. and Wood, F. 2016. Ethnographic methods for process evaluations of complex behaviour interventions. Trials, 17, 232, 111.Google Scholar
Olstead (now Chisholm), R. and Bischoping, K. 2012. Men, masculinities and constructions of self in panic discourse. Journal of Men's Studies, 20, 3, 274–86.Google Scholar
Orona, C. 1990. Temporality and identity loss due to Alzheimer's disease. Social Science & Medicine, 30, 11, 1247–56.Google Scholar
Orpin, P., Stirling, C., Hetherington, S. and Robinson, A. 2014. Rural dementia carers: formal and informal sources of support. Ageing & Society, 34, 2, 185208.Google Scholar
Pals, J. L. 2006. Authoring a second chance in life: emotion and transformational processing within narrative identity. Research in Human Development, 3, 2/3, 101–20.Google Scholar
Parker, M. 2007. Ethnography/ethics. Social Science & Medicine, 65, 11, 2248–59.Google Scholar
Parr, H., Philo, C. and Burns, N. 2004. Social geographies of rural mental health: experiencing inclusions and exclusions. Transactions of the Institute of British Geographers, 29, 4, 401–19.Google Scholar
Philo, C. Parr, H. and Burns, N. 2003. Rural madness: a geographical reading and critique of the rural mental health literature. Journal of Rural Studies, 19, 3, 259–81.Google Scholar
Post, S. 1995. Alzheimer's disease and the ‘then’ self. Kennedy Institute of Ethics Journal, 5, 4, 307–21.Google Scholar
Radley, A. 1990. Artefacts, memory and a sense of the past. In Middleton, D. and Edward, D. (eds), Collective Remembering. Sage, London, 4659.Google Scholar
Sabat, S., Napolitano, L. and Fath, H. 2004. Barriers to the construction of a valued social identity: a case study of Alzheimer's disease. American Journal of Alzheimer's Disease and Other Dementias, 19, 3, 177–85.Google Scholar
Sacks, H. 1995. Lectures on Conversation. Volume 2, Jefferson, G. (ed.). Wiley-Blackwell, New York.Google Scholar
Saugeres, L. 2002. The cultural representation of the farming landscape: masculinity, power and nature. Journal of Rural Studies, 18, 4, 373–84.Google Scholar
Schoenberg, N., Drew, E., Stoller, E. and Kart, C. 2005. Situating stress: lessons from lay discourses on diabetes. Medical Anthropology Quarterly, 19, 2, 171–93.Google Scholar
Shields, M. 2008. Community belonging and self-perceived health. Health Reports, 19, 2, 5160.Google Scholar
Sinding, C. and Aronson, J. 2003. Exposing failures, unsettling accommodations: Tensions in interview practice. Qualitative Research, 3, 1, 95117.Google Scholar
Sudnow, D. 1967. Passing On: The Social Organization of Dying. Prentice-Hall, Upper Saddle River, New Jersey.Google Scholar
Sweeting, H. and Gilhooly, M. 1997. Dementia and the phenomenon of social death. Sociology of Health & Illness, 19, 1, 93117.Google Scholar
Taylor, J. 2011. The intimate insider: negotiating the ethics of friendship when doing insider research. Qualitative Research, 11, 1, 322.Google Scholar
Whitehead, L. C. 2006. Quest, chaos and restitution: living with chronic fatigue syndrome/myalgic encephalomyelitis. Social Science & Medicine, 62, 9, 2236–45.Google Scholar
Wilkinson, S. and Kitzinger, C. 2013. Representing our own experience: issues in ‘insider’ research. Psychology of Women Quarterly, 37, 2, 251–5.Google Scholar
Williams, K. 2007. Ostracism: the kiss of social death. Social and Personality Psychology Compass, 1, 1, 236–7.Google Scholar