Mythical dementia and Alzheimerised senility: discrepant and intersecting representations of cognitive decline in later life
- 5 Downloads
Dementia is a growing global health concern as worldwide incidence increases amidst population ageing. How people affected by dementia understand the condition is important in influencing their emotional and behavioural responses to it. Improved knowledge of these understandings could inform support that is better tailored to people’s needs. The biomedical research community articulates an understanding of ‘mythical dementia’ comprising a syndrome of cognitive decline caused by numerous discrete neuropathological processes. In this paper, I draw on data from interviews with people affected by dementia to explore how their understandings of dementia differ from the biomedical ‘mythical dementia’. People affected by dementia articulate understandings of ‘Alzheimerised senility’, attributing personal change to a combination of illness, ageing and personality, within a broader context of comorbidity and semi-naturalised decline. These understandings resemble traditional notions of senility, but they are Alzheimerised through the introduction of biomedical ideas. These findings are important in the contemporary political context of early diagnosis promotion.
KeywordsDementia Alzheimer’s Senility Diagnosis Illness Disease
I wish to Nick Manning, Karen Glaser, Rosanna Lush McCrum and attendees of the GHSM writing retreat for providing helpful comments on earlier drafts of this paper.
This work was supported by the Economic and Social Research Council (Grant No. 1440363).
Compliance with ethical standards
Conflict of interest
The author declares no conflicting interests.
- Adamson, J. 2001. Awareness and understanding of dementia in African/Caribbean and South Asian families. Health and Social Care in the Community 9 (6): 391–396.Google Scholar
- Alzheimer’s Society. 2017. Five things you should know about dementia. https://www.alzheimers.org.uk/about-dementia/five-things-you-should-know-about-dementia. Accessed 29 Nov 2018.
- Alzheimer’s Society Canada. 2017. Normal aging vs dementia. http://www.alzheimer.ca/en/Home/About-dementia/What-is-dementia/Normal-aging-vs-dementia. Accessed 29 Nov 2018.
- Anspach, R.R. 2011. Preface. In Sociology of diagnosis, ed. P.J. McGann and D.J. Hutson, 13–27. Bingley: Emerald Group Publishing.Google Scholar
- Beard, R.L. 2016. Living with Alzheimer’s: managing memory loss, identity, and illness. New York: New York University Press.Google Scholar
- Burke, M.C. 2011. Resisting pathology: GID and the contested terrain of diagnosis in the transgender rights movement. In Sociology of diagnosis, ed. P.J. McGann and D.J. Hutson, 183–210. Bingley: Emerald Group Publishing.Google Scholar
- Bury, M.R. 1982. Chronic illness as biographical disruption. Sociology of Health & Illness 4 (2): 167–182.Google Scholar
- Clare, L., C. Quinn, I.R. Jones, and R.T. Woods. 2016. “I don’t think of it as an illness”: illness representations in mild to moderate dementia. Journal of Alzheimer’s Disease 51 (1): 139–150.Google Scholar
- Corner, L., and J. Bond. 2006. The impact of the label of mild cognitive impairment on the individual’s sense of self. Philosophy, Psychiatry, & Psychology 13 (1): 3–12.Google Scholar
- Cummings, J. 2018. Lessons learned from Alzheimer disease: clinical trials with negative outcomes. Clinical and Translational Science 11 (2): 147–152.Google Scholar
- Davis, R. 1989. My journey into Alzheimer’s disease. Buckinghamshire: Scripture Press.Google Scholar
- Davis, D.H. 2004. Dementia: sociological and philosophical constructions. Social Science and Medicine 58 (2): 369–378.Google Scholar
- Fereday, J., and E. Muir-Cochrane. 2006. Demonstrating rigor using thematic analysis: a hybrid approach of inductive and deductive coding and theme development. International Journal of Qualitative Methods 5 (1): 80–92.Google Scholar
- Fletcher, J.R. 2019. Negotiating tensions between methodology and procedural ethics. Journal of Gerontological Social Work 62 (4): 384–391.Google Scholar
- Fox, P. 1989. From senility to Alzheimer’s disease: the rise of the Alzheimer’s disease movement. The Milbank Quarterly 67 (1): 58–102.Google Scholar
- Gaines, A.D., and P.J. Whitehouse. 2006. Building a mystery: Alzheimer’s disease, mild cognitive impairment, and beyond. Philosophy, Psychiatry, & Psychology 13 (1): 61–74.Google Scholar
- Gibson, W.J., and A. Brown. 2009. Working with qualitative data. London: SAGE.Google Scholar
- Gubrium, J.F. 1986. Oldtimers and Alzheimer’s: the descriptive organization of senility. Chicago: The University of Chicago Press.Google Scholar
- Gubrium, J.F. 1987. Structuring and destructuring the course of illness: the Alzheimer’s disease experience. Sociology of Health & Illness 9: 1–24.Google Scholar
- Higgs, P. 2013. ‘Disturbances in the field’: the challenge of changes in ageing and later life for social theory and health. Social Theory & Health 11 (3): 271–284.Google Scholar
- Higgs, P., and C. Gilleard. 2017. Ageing, dementia and the social mind: past, present and future perspectives. Sociology of Health & Illness 39 (2): 175–181.Google Scholar
- Hulko, W. 2009. From ‘not a big deal’ to ‘hellish’: experiences of older people with dementia. Journal of Aging Studies 23 (3): 131–144.Google Scholar
- Johnson, C.J., and R.H. Johnson. 2000. Alzheimer’s disease as a “trip back in time”. American Journal of Alzheimer’s Disease 15 (2): 87–93.Google Scholar
- Jutel, A. 2009. Sociology of diagnosis: a preliminary review. Sociology of Health & Illness 31 (2): 278–299.Google Scholar
- Jutel, A. 2010. Medically unexplained symptoms and the disease label. Social Theory & Health 8 (3): 229–245.Google Scholar
- Keady, J. 1996. The experience of dementia: a review of the literature and implications for nursing practice. Journal of Clinical Nursing 5 (5): 275–288.Google Scholar
- Keady, J., and M. Nolan. 1994. Younger onset dementia: developing a longitudinal model as the basis for a research agenda and as a guide to interventions with sufferers and carers. Journal of Advanced Nursing 19: 659–669.Google Scholar
- Khurana, V., D.F. Tardiff, C.Y. Chung, and S. Lindquist. 2015. Toward stem cell-based phenotypic screens for neurodegenerative diseases. Nature Reviews Neurology 11: 339–350.Google Scholar
- Kleinman, A., L. Eisenberg, and B. Good. 1978. Culture, illness, and care: clinical lessons from anthropologic and cross-cultural research. Annals of Internal Medicine 88 (2): 251–258.Google Scholar
- Lee, S.E., H.Y. Lee, and S. Diwan. 2010. What do Korean American immigrants know about Alzheimer’s disease (AD)? The impact of acculturation and exposure to the disease on AD knowledge. International Journal of Geriatric Psychiatry 25 (1): 66–73.Google Scholar
- Lock, M. 2013. The Alzheimer conundrum: entanglements of dementia and ageing. Woodstock: Princeton University Press.Google Scholar
- Manthorpe, J., K. Samsi, S. Campbell, C. Abley, J. Keady, J. Bond, S. Watts, L. Robinson, A. Gemski, J. Warner, and C. Goodman. 2011. The transition from cognitive impairment to dementia: older people’s experiences. London: NIHR Service Delivery and Organisation programme.Google Scholar
- Mental Capacity Act. 2005. https://www.legislation.gov.uk/ukpga/2005/9/pdfs/ukpga_20050009_en.pdf. Accessed 29 Nov 2018.
- Murphy, K., F. Jordan, A. Hunter, A. Cooney, and D. Casey. 2015. Articulating the strategies for maximising the inclusion of people with dementia in qualitative research studies. Dementia 14 (6): 800–824.Google Scholar
- NIH. 2018. The dementias: hope through research. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Dementia-Hope-Through-Research. Accessed 29 Nov 2018.
- NHS. 2017. Benefits of early dementia diagnosis. https://www.nhs.uk/conditions/dementia/early-diagnosis-benefits/. Accessed 29 Nov 2018.
- Phillips, J. 2007. Care: key concepts. Cambridge: Polity Press.Google Scholar
- Quinn, C., I.R. Jones, and L. Clare. 2017. Illness representations in caregivers of people with dementia. Aging & Mental Health 21 (5): 553–561.Google Scholar
- Quinn, C., R.G. Morris, and L. Clare. 2018. Beliefs about dementia: development and validation of the representations and adjustment to dementia index (RADIX). The American Journal of Geriatric Psychiatry 26 (6): 680–689.Google Scholar
- Reisberg, B. 1984. Stages of cognitive decline. The American Journal of Nursing 84 (2): 225–228.Google Scholar
- Rempel, G.R., A. Neufeld, and K.E. Kushner. 2007. Interactive use of genograms and ecomaps in family caregiving research. Journal of Family Nursing 13 (4): 403–419.Google Scholar
- Richard, E., B. Schmand, P. Eikelenboom, R.G. Westendorp, and W.A. Van Gool. 2012. The Alzheimer myth and biomarker research in dementia. Journal of Alzheimer’s Disease 31 (s3): S203–S209.Google Scholar
- Riva, M., S. Caratozzolo, M. Zanetti, B.V. Chilovi, A. Padovani, and L. Rozzini. 2012. Knowledge and attitudes about Alzheimer’s disease in the lay public: influence of caregiving experience and other socio-demographic factors in an Italian sample. Aging Clinical & Experimental Research 24 (5): 509–516.Google Scholar
- Royall, D. 2003. The “Alzheimerization” of dementia research. Journal of the American Geriatrics Society 51 (2): 277–278.Google Scholar
- Scheltens, P., and K. Rockwood. 2011. How golden is the gold standard of neuropathology in dementia? Alzheimer’s & Dementia 7 (4): 486–489.Google Scholar
- Smith, B.J., S. Ali, and H. Quach. 2014. Public knowledge and beliefs about dementia risk reduction: a national survey of Australians. BMC Public Health 14 (1): 661.Google Scholar
- Ward, A., and M. Dobson. 2014. Lessons learned from a dementia training programme for health professionals. The Journal of Practice Teaching & Learning 12 (3): 25–43.Google Scholar
- Whitehouse, P.J., and D. George. 2008. The myth of Alzheimer’s: what you aren’t being told about today’s most dreaded diagnosis. New York: St Martin’s Griffin.Google Scholar
- Williams, S. 2000. Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociology of Health & Illness 22 (1): 40–67.Google Scholar
- Woo, B.K. 2013. Knowledge of dementia among Chinese American immigrants. Asian Journal of Psychiatry 6 (4): 351–352.Google Scholar