Abstract
The current molecular model of Alzheimer’s disease has a number of inadequacies and has so far provided little improvement to quality of life. The entanglement model of Alzheimer’s disease offers an alternative. It conceptualizes Alzheimer’s disease within a complex range of considerations and advocates public health measures in response. This paper seeks to incorporate a social model within entanglement. To address entanglement’s lack of social considerations, a sociological account of dementia more broadly is proposed. A theoretical account is offered through re-examining influential psychosocial work on dementia, within a symbolic interactionist framework. Dementia is illustrated as a process of excess disability, from the discovery of stigma during diagnosis through to the moral career of cognitive decline. As cures are not forthcoming and dementia is currently addressed socially through care, the pursuit of social solutions is an evident, necessary and achievable goal. This can be realized through education, within a broader public health approach.
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References
Adams, T. 1998. The discursive construction of dementia care: implications for mental health nursing. Journal of Advanced Nursing 28 (3): 614–621.
Aquilina, C., and J.C. Hughes. 2006. The return of the living dead: agency lost and found? In Dementia: Mind, Meaning and the Person, ed. J.C. Hughes, S.J. Louw, and S.R. Sabat. Oxford: Oxford University Press.
Ballenger, J.F. 2000. Beyond the characteristic plaques and tangles: mid-twentieth century US psychiatry and the fight against senility. In Concepts of Alzheimer Disease: Biological, Clinical and Cultural Perspectives, ed. P.J. Whitehouse, K. Maurer, and J.F. Ballenger. Baltimore: The John Hopkins University Press.
Beard, R.L., and P.J. Fox. 2008. Resisting social disenfranchisement: negotiating collective identities and everyday life with memory loss. Social Science and Medicine 66: 1509–1520.
Beard, R.L., J. Knauss, and D. Moyer. 2009. Managing disability and enjoying life: how we reframe dementia through personal narratives. Journal of Aging Studies 23: 227–235.
Beard, R.L., S. Sakhtah, V. Imse, and J.E. Galvin. 2012. Negotiating the joint career: couples adapting to Alzheimer’s and aging in place. Journal of Aging Research. doi:10.1155/2012/797023.
Blumer, H. 1969. Symbolic Interactionism: Perspective and Method. Englewood Cliffs: Prentice-Hall Inc.
Brittain, K., L. Corner, L. Robinson, and J. Bond. 2010. Ageing in place and technologies of place: the lived experience of people with dementia in changing social, physical and technological environments. Sociology of Health & Illness 32 (2): 272–287.
Butler, R. 1975. Why Survive? Being Old in America. New York: Harper & Row.
Caddell, L.S., and L. Clare. 2010. The impact of dementia on self and identity: a systematic review. Aging & Mental Health 30: 113–126.
Caddell, L.S., and L. Clare. 2011. Interventions supporting self and identity in people with dementia: a systematic review. Clinical Psychology Review 15 (7): 797–810.
Carr, S. 2014. Pay, conditions and care quality in residential, nursing and domiciliary services. York: Joseph Rowntree Foundation.
Dewing, J. 2008. Personhood and dementia: revisiting Tom Kitwood’s ideas. International Journal of Older People Nursing 3 (1): 3–13.
Dobbs, D., J.K. Eckert, B. Rubinstein, L. Keimig, L. Clark, A.C. Frankowski, and S. Zimmerman. 2008. An ethnographic study of stigma and ageism in residential care or assisted living. The Gerontologist 48 (4): 517–526.
Fox, P.J. 1989. From senility to Alzheimer’s disease: the rise of the Alzheimer’s disease movement. The Milbank Quarterly 67 (1): 58–102.
Gilleard, C., and P. Higgs. 2014. Studying dementia: the relevance of the fourth age. Quality in Ageing and Older Adults 15 (4): 241–243.
Goffman, E. 1963. Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs: Prentice-Hall Inc.
Graham, J.E., and R. Bassett. 2006. Reciprocal relations: the recognition and co-construction of caring with Alzheimer’s disease. Journal of Aging Studies 20: 335–349.
Gubrium, J.F. 1986. The social preservation of mind: the Alzheimer’s disease experience. Symbolic Interaction 9 (1): 37–51.
Gubrium, J.F. 1987. Structuring and destructuring the course of illness: the Alzheimer’s disease experience. Sociology of Health & Illness 9 (1): 1–24.
Higgs, P., and C. Gilleard. 2016. Interrogating personhood and dementia. Aging & Mental Health 20 (8): 773–780.
Holmes, C., D. Boche, D. Wilkinson, G. Yadegarfar, V. Hopkins, A. Bayer, R.W. Jones, R. Bullock, S. Love, W.J. Neal, E. Zotova, and J.A.R. Nicoll. 2008. Long-term effects of Aβ42 immunisation in Alzheimer’s disease: follow-up of a randomised, placebo-controlled phase I trial. Lancet 372: 216–223.
Hughes, J.C., S.J. Louw, and S.R. Sabat. 2006. Seeing whole. In Dementia: Mind, Meaning and the Person, ed. J.C. Hughes, S.J. Louw, and S.R. Sabat. Oxford: Oxford University Press.
Jones, D.S., and J.A. Greene. 2016. Is Dementia in decline? historical trends and future trajectories. New England Journal of Medicine 374 (6): 507–509.
Kitwood, T. 1997. Dementia Reconsidered: the Person Comes First. Buckingham: Open University Press.
Kontos, P.C. 2003. “The painterly hand”: embodied consciousness and Alzheimer’s disease. Journal of Aging Studies 17 (2): 151–170.
Kontos, P.C. 2012. Alzheimer expressions or expressions despite Alzheimer’s?: Philosophical reflections on selfhood and embodiment. Occasion: Interdisciplinary Studies in the Humanities 4: 1–12.
Kontos, P., and W. Martin. 2013. Embodiment and dementia: exploring critical narratives of selfhood, surveillance and dementia care. Dementia 12 (3): 288–302.
Kuehn, B.M. 2015. The brain fights back: new approaches to mitigating cognitive decline. The Journal of the American Medical Association 314 (23): 2492–2494.
Laing, R.D. 1960. The divided self: an existential study in sanity and madness. London: Tavistock Publications.
Langdon, S.A., A. Eagle, and J. Warner. 2007. Making sense of dementia in the social world: a qualitative study. Social Science and Medicine 64: 989–1000.
Lloyd, B.T., and C. Stirling. 2011. Ambiguous gain: uncertain benefits of service use for dementia carers. Sociology of Health & Illness 66 (3): 899–913.
Lock, M. 2013. The Alzheimer Conundrum: Entanglements of Dementia and Ageing. Woodstock: Princeton University Press.
MacRae, H. 2011. Self and other: the importance of social interaction and social relationships in shaping the experience of early-stage Alzheimer’s disease. Journal of Aging Studies 25: 445–456.
Mead, G.H. 1934. Mind, Self & Society. Chicago: University of Chicago Press.
Öhman, A., S. Josephsson, and L. Nygård. 2008. Awareness through interaction in everyday occupations: experiences of people with Alzheimer’s disease. Scandinavian Journal of Occupational Therapy 15 (1): 43–51.
Orr, D.M.R., and Y. Teo. 2015. Carers’ responses to shifting identity in dementia in Iris and away from her: cultivating stability or embracing change? Medical Humanities 41: 81–85.
Piiparinen, R., and C.J. Whitlatch. 2011. Existential loss as a determinant to well-being in the dementia caregiving dyad: a conceptual model. Dementia 10 (2): 185–201.
Prince, M., M. Knapp, M. Guerchet, P. McCrone, M. Prina, A. Comas-Herrera, R. Wittenberg, B. Adelaja, B. Hu, D. King, A. Rehill, and D. Salimkumar. 2014. Dementia UK, 2nd ed. London: Alzheimer’s Society Ltd.
Radden, J., and J.M. Fordyce. 2006. Into the darkness: losing identity with dementia. In Dementia: Mind, Meaning and the Person, ed. J.C. Hughes, S.J. Louw, and S.R. Sabat. Oxford: Oxford University Press.
Robinson, L., L. Clare, and K. Evans. 2005. Making sense of dementia and adjusting to loss: psychological reactions to a diagnosis of dementia in couples. Aging & Mental Health 9 (4): 337–347.
Sabat, S.R. 2001. The experience of Alzheimer’s disease: life through a tangled veil. Oxford: Blackwell Publishers Ltd.
Shalin, D.N. 2014. Goffman on mental illness: Asylums and “the insanity of place” revisited. Symbolic Interaction 37 (1): 122–144.
Snyder, L. 2006. Personhood and interpersonal communication in dementia. In Dementia: Mind, Meaning and the Person, ed. J.C. Hughes, S.J. Louw, and S.R. Sabat. Oxford: Oxford University Press.
Sweeting, H., and M. Gilhooly. 1997. Dementia and the phenomenon of social death. Sociology of Health & Illness 19 (1): 93–117.
Twigg, J. 2010. Clothing and dementia: a neglected dimension? Journal of Aging Studies 24 (4): 223–230.
Acknowledgements
I would like to thank Nick Manning, Karen Glaser, Rosanna Lush McCrum, Giulia Cavaliere, Sue Fletcher and Nicola Lush for their help in developing this article. Thanks are also due to the anonymous reviewers for their constructive feedback. This work was supported by the Economic and Social Research Council [grant number 1440363].
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Fletcher, J.R. A symbolic interactionism of dementia: a tangle in ‘the Alzheimer Conundrum’. Soc Theory Health 16, 172–187 (2018). https://doi.org/10.1057/s41285-017-0050-5
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DOI: https://doi.org/10.1057/s41285-017-0050-5