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The emergent modes of dementia activism

Published online by Cambridge University Press:  20 November 2012

RUTH BARTLETT
RUTH BARTLETT*
Affiliation:
Faculty of Health Sciences, University of Southampton, UK.
*
Address for correspondence: Ruth Bartlett, Faculty of Health Sciences, University of Southampton, Highfield Campus, Southampton SO17 1BJ, UK. E-mail: [email protected]
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Abstract

After decades of silencing and discrimination, people with dementia are beginning to join forces, take action and campaign for social change. Drawing on data obtained from ‘activists’ with dementia using diary interview method and participant observation, this paper considers the emergent modes of dementia activism in the context of the social movement literature, and in particular, work emphasising the role of networks in health social movements. The study identified three emergent modes of dementia activism; these were the ‘protecting-self against decline’ mode, ‘(re) gaining respect’ mode, and ‘creating connections with other people with dementia’ mode. Taken together, these modes show how a sense of elapsing time pervades this form of activism. The investigation reinforces the contention that time is a dominated force that structures human motivation and goals. Furthermore, it raises the possibility that activism can protect against decline amongst people with dementia given the appropriate temporal space.

Keywords

activismdementiasocial movementtemporality
Type
Articles
Information
Ageing & Society , Volume 34 , Issue 4 , April 2014 , pp. 623 - 644
Copyright
Copyright © Cambridge University Press 2012 

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References

Adam, B. 1990. Time and Social Theory. Polity Press, Cambridge.Google Scholar
Allsop, J., Jones, K. and Baggott, R. 2004. Health consumer groups in the UK: a new social movement? Sociology of Health and Illness, 26, 6, 737–56.Google Scholar
Anglin, M. 1997. Working from the inside out: implications of breast cancer activism for biomedical policies and practices. Social Science and Medicine, 44, 9, 1403–15.CrossRefGoogle ScholarPubMed
Anspach, R. 1979. From stigma to identity politics: political activism among the physically disabled and former mental patients. Social Science and Medicine, 13A, 765–73.Google Scholar
Bartlett, R. 2012. Modifying the diary interview method to research the lives of people with dementia. Qualitative Health Research, 22, 12, 1717–26.Google Scholar
Barnes, M., Harrison, E. and Murray, L. 2012. Ageing activists: who gets involved in older peoples’ forums? Ageing & Society, 32, 2, 261–80.CrossRefGoogle Scholar
Bauman, Z. 1999. In Search of Politics. Polity, Oxford.Google Scholar
Beard, R. 2004 a. Advocating voice: organisational, historical and social milieux of the Alzheimer's disease movement. Sociology of Health and Illness, 26, 6, 797–819.CrossRefGoogle ScholarPubMed
Beard, R. 2004 b. In their voices: identity preservation and experiences of Alzheimer's disease. Journal of Aging Studies, 18, 4, 415–28.CrossRefGoogle Scholar
Beard, R. and Fox, P. 2008. Resisting social disenfranchisement: negotiating collective identities and everyday life with dementia. Social Science and Medicine, 66, 7, 1509–20.Google Scholar
Beard, R., Knauss, J. and Moyer, D. 2009. Managing disability and enjoying life: how we reframe dementia through personal narratives. Journal of Aging Studies, 23, 4, 227–35.Google Scholar
Braudy-Harris, P. and Keady, J. 2009. Selfhood in younger onset dementia: transitions and testimonies. Aging and Mental Health, 13, 3, 437–44.CrossRefGoogle Scholar
British Society of Gerontology 2008. BSG Guidelines on Ethical Research with Human Participants. Available online at http://www.britishgerontology.org/ageing-studies/bsg-ethical-guidelines.html [Accessed 26 September 2012].Google Scholar
Brown, P. and Zavestovski, S. 2004. Social movements in health: an introduction. Sociology of Health and Illness, 26, 6, 679–94.Google Scholar
Carstensen, L., Isaacowitz, D. and Charles, S. 1999. Taking time seriously: a theory of socio emotional selectivity. American Psychologist, 54, 3, 165–81.CrossRefGoogle Scholar
Charlton, J. 1998. Nothing About Us Without Us: Disability Oppression and Empowerment. University of California Press, Berkeley, California.Google Scholar
Charmaz, K. 1991. Good Days, Bad Days: The Self in Chronic Illness and Time. Rutgers University Press, New Brunswick, New Jersey.Google Scholar
Clare, L., Rowlands, J. and Quin, R. 2008. Collective strength: the impact of developing a shared social identity in early-stage dementia. Dementia: The International Journal of Social Research and Practice, 7, 19–30.CrossRefGoogle Scholar
Crossley, M. and Crossley, N. 2001. ‘Patient’ voices, social movements and the habitus; how psychiatric survivors ‘speak out’. Social Science and Medicine, 52, 10, 1477–89.Google Scholar
Crossley, N. 1999. Fish, field, habitus and madness: the first wave mental health users movement in Great Britain. British Journal of Sociology, 50, 4, 647–70.Google Scholar
Della Porta, D. and Diani, M. 2006. Social Movements: An Introduction. Second edition, Blackwell Publishing, Oxford.Google Scholar
Doetsch-Kidder, S. 2012. Social Change and Intersectional Activism: The Spirit of Social Movement. Palgrave Macmillan, New York.Google Scholar
Elliot, H. 1997. The use of diaries in sociological research on health experience. Sociological Research Online, 2, 2. Available online at www.socresonline.org.uk/2/2/7.html [Accessed 26 September 2012].Google Scholar
Emery, V., Olga, B. and Oxman, T. E. (eds) 2003. Dementia: Presentation, Differential Diagnosis, and Nosology. Johns Hopkins University Press, Baltimore, Maryland.Google Scholar
Epstein, S. 1996. Impure Science: AIDS, Activism, and the Politics of Knowledge. University of California Press, Berkeley, California.Google ScholarPubMed
Fox, P. F. 1989. From senility to Alzheimer's disease: the rise of the Alzheimer's disease movement. The Millbank Quarterly, 67, 1, 58–102.Google Scholar
Gillett, J. 2003. Media activism and Internet use by people with HIV/AIDS. Sociology of Health and Illness, 25, 6, 608–24.Google Scholar
Ginn, J. and Arber, S. 1993. Ageing and cultural stereotypes of older women. In Johnson, J. and Slater, R. (eds), Ageing and Later Life. Sage, London. 60–67.Google Scholar
Graham, N., Lindesay, J., Katona, C., Manoel Bertolote, J., Camus, V., Copeland, J., De Mendonca Lima, A., Gaillard, M., Nargeot, M., Gray, J., Jacobsson, L., Kingma, M., Kuhne, N., O'Loughlin, A., Rutz, W., Saraceono, B., Taintor, Z. and Wancata, J. 2003. Reducing stigma and discrimination against older people with mental disorders: a technical consensus statement. International Journal of Geriatric Psychiatry, 18, 8, 670–8.CrossRefGoogle ScholarPubMed
Gubrium, J. 1987. Structuring and destructuring the course of illness: the Alzheimer's disease experience. Sociology of Health and Illness, 9, 1, 1–24.CrossRefGoogle Scholar
Hammersley, M. and Atkinson, P. 2007. Ethnography: Principles and Practice. Third edition, Routledge, London.Google Scholar
Heberle, R. 1951. Social Movements: An Introduction to Political Sociology. Appleton-Century-Crofts, New York.Google Scholar
Hellstrom, I., Nolan, M., Nordenfelt, L. and Lundh, U. 2007. Ethical and methodological issues in interviewing persons with dementia. Nursing Ethics, 14, 5, 608–19.Google Scholar
Hughes, B. 2009. Disability activisms: social model stalwarts and biological citizens. Disability and Society, 24, 6, 677–88.Google Scholar
Hulko, W. 2009. From ‘not a big deal’ to ‘hellish’: experiences of older people with dementia. Journal of Aging Studies, 23, 3, 131–44.Google Scholar
Jacelon, C. and Imperio, K. 2005. Participant diaries as a source of data in research with older adults. Qualitative Health Research, 15, 7, 991–6.Google Scholar
Kitwood, T. 1997. Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham, UK.Google Scholar
Klar, M. and Kasser, T. 2009. Some benefits of being an activist: measuring activism and its role in psychological well-being. Political Psychology, 30, 5, 755–77.Google Scholar
Klawiter, M. 2008. The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism. University of Minnesota Press, Minneapolis, Minnesota.Google Scholar
Landzeliusik, K. 2006. Introduction: patient organisation movements and new metamorphoses in patienthood. Social Science and Medicine, 62, 3, 529–37.CrossRefGoogle Scholar
Lin, N. 2001. Social Capital: A Theory of Social Structure and Action. Cambridge University Press, Cambridge.Google Scholar
MacRae, H. 2008. ‘Making the best you can of it’: living with early-stage Alzheimer's disease. Sociology of Health and Illness, 30, 3, 396–412.CrossRefGoogle Scholar
Martin, B. 2007. Activism, social and political. In Anderson, G. and Herr, K. (eds), Encyclopaedia of Activism and Social Justice. Volume 1, Sage, Thousand Oaks, California, 19–27.Google Scholar
McLeod, J. and Thomson, R. 2009. Researching Social Change: Qualitative Approaches. Sage, London.Google Scholar
O'Connor, D., Phinney, A. and Hulko, W. 2010. Dementia at the intersections: a unique case study exploring social location. Journal of Aging Studies, 24, 1, 30–9.Google Scholar
Pink, S. 2007. Doing Visual Ethnography. Second edition, Sage, London.Google Scholar
Pink, S. 2009. Doing Sensory Ethnography. Sage, London.Google Scholar
Polletta, F. and Jasper, J. 2001. Collective identity and social movements. Annual Review of Sociology, 27, 283–305.Google Scholar
Richards, L. 2005. Handling Qualitative Data: A Practical Guide. Sage, London.Google Scholar
Saunders, C. 2008. Double-edged swords? Collective identity and solidarity in the environment movement. British Journal of Sociology, 59, 2, 227–53.Google Scholar
Weaks, D., Wilkinson, H., Houston, A. and McKillop, J. 2012. Perspectives on Ageing with Dementia. Joseph Rowntree Foundation, York, UK.Google Scholar
Weber, M. 1947. The Theory of Social and Economic Organization. Oxford University Press, New York.Google Scholar
Williamson, T. 2012. A stronger collective voice for people with dementia. Joseph Rowntree Foundation, York. UK. Available to download from http://www.jrf.org.uk/publications/stronger-collective-voiceGoogle Scholar
Xie, J., Brayne, C. and Mathews, F. 2008. Survival times in people with dementia: analysis from population based cohort study with 14 year follow up. British Medical Journal, 336, 256.Google Scholar
Zimmerman, D. and Weider, D. L. 1975. Diary-interview method. Urban Life, 5, 4, 479–98.Google Scholar