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Dementia Beyond Pathology: What People Diagnosed Can Teach Us About Our Shared Humanity

  • Steven R. SabatEmail author
Symposium: Dementia

Abstract

In this article, I explore how methods of investigation can allow us either to appreciate the intact cognitive and social abilities of people with Alzheimer’s disease or unwittingly obscure those same abilities. Specifically, I shall assert that (1) the biomedical- quantitative approach, while being generally appropriate for drug efficacy studies, does not allow us to appreciate the many significant strengths possessed by people diagnosed with dementia, (2) qualitative/narrative approaches do so admirably, and (3) understanding the cognitive and social strengths of people diagnosed is of paramount importance for developing optimal care giving approaches and reveals strikingly the shared humanity of those diagnosed with dementia and those deemed healthy.

Keywords

Alzheimer’s disease Dementia Qualitative studies Phenomenology Negative stereotypes 

Notes

References

  1. American Psychiatric Association. 2013. Diagnostic and statistical manual of mental disorders, 5th ed. Arlington, VA: American Psychiatric Publishing.Google Scholar
  2. Beard R.L. 2004. In their voices: Identity preservation and experiences of Alzheimer’s disease. Journal of Aging Studies 18(4): 415–428.CrossRefGoogle Scholar
  3. ----. 2016. Living with Alzheimer’s: Managing memory loss, identity, and illness. New York: NYU Press.Google Scholar
  4. 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.CrossRefGoogle Scholar
  5. de Medeiros, K., P.A. Saunders, P.J. Doyle, A. Mosby, and K.Van Haitsma. 2011. Friendships among people with dementia in long-term care. Dementia 11(3): 363–381.CrossRefGoogle Scholar
  6. Dewing, J. 2008. Personhood and dementia: Revisiting Tom Kitwood’s ideas. Internatonal Journal of Older People Nursing 3(1): 3–13.CrossRefGoogle Scholar
  7. Goffman, E. 1968. Stigma: Notes on the management of spoiled identity. Harmondsworth: Penguin Books.Google Scholar
  8. Green, D., and J. Swets. 1966. Signal detection theory and psychophysics. New York: Wiley.Google Scholar
  9. Higgs, P., and C. Gilleard. 2016. Interrogating personhood and dementia. Aging and Mental Health 20(8): 773–780.CrossRefGoogle Scholar
  10. Keady, J., and J. Gilliard. 2002. Testing times. The experience of neuropsychological assessment for people with suspected Alzheimer’s disease. In The person with Alzheimer’s disease: Pathways to understanding the experience, edited by P.B. Harris, 3–28 Baltimore, MD: The Johns Hopkins University Press.Google Scholar
  11. Keady, J., L-C. Hydén, A. Johnson, and C. Swarbrick (eds). 2018. Social research methods in dementia studies: Inclusion and innovation. London: Routledge.Google Scholar
  12. Killick, J. 2016. Creativity and dementia. In Positive psychology approaches to dementia, edited by C. Clarke and E. Wolverson, 175–195. London: Jessica Kingsley Publishers.Google Scholar
  13. Kitwood. T. 1997. Dementia reconsidered: The person comes first. Buckingham: Open University Press.Google Scholar
  14. Kontos, P. 2004. Ethnographic reflections on selfhood, embodiment and Alzheimer’s disease. Ageing and Society 24(6): 829–849.CrossRefGoogle Scholar
  15. ----. 2005. Embodied selfhood in Alzheimer’s disease: Rethinking person-centred care. Dementia 4(4): 553–570.Google Scholar
  16. ----. 2012. Rethinking sociability in long-term care: An embodied dimension of selfhood. Dementia 11(3): 329–346.Google Scholar
  17. Lock, M. 2014. The Alzheimer’s conundrum: Entanglements of aging and dementia. Princeton: Princeton University Press.Google Scholar
  18. Lokon, E., J.M. Kinney, and S.Kunkel. 2012. Building bridges across age and cognitive barriers through art: College students’ reflections on an intergenerational program with elders who have dementia. Journal of Intergenerational Relationships 10(4): 337–354.Google Scholar
  19. Lyman, K. 1991. Bringing the social back in: A critique of biomedicine and dementia. Gerontologist 29(5): 597–605.CrossRefGoogle Scholar
  20. McCurdy, D.B. 1998. Personhood, spirituality, and hope in the care of human beings with dementia. Journal of Clinical Ethics 9(1): 81–91.Google Scholar
  21. Niebuhr, H.R. 1963. The responsible self: An essay in Christian moral philosophy. NewYork: Harper and Row.Google Scholar
  22. Sabat, S.R. 2001. The experience of Alzheimer’s disease: Life through a tangled veil. Oxford: Blackwell.Google Scholar
  23. ----. 2010. Pre-positioning, malignant positioning, and the disempowering loss of privileges endured by people with Alzheimer’s disease. In Words of conflict, words of war: How the language we use in political processes sparks fighting, edited by F.M. Moghaddam and R. Harré, 89–104. Santa Barbara, CA: Praeger.Google Scholar
  24. Sabat, S.R., and R. Harré. 1994. The Alzheimer’s disease sufferer as a semiotic subject. Philosophy, Psychiatry, and Psychology 1(3): 145–160.Google Scholar
  25. Shweder, R.A. and M. Sullivan. 1990. The semiotic subject of cultural psychology. In Handbook of Personality Theory and Research, edited by L. Pervin, 399–416. New York: Guilford.Google Scholar
  26. Snyder, L. 2009. Speaking our minds: What it’s like to have Alzheimer’s. Baltimore, MD: Health Professions Press.Google Scholar
  27. Swaffer, K. 2015. Dementia and prescribed disengagement. Dementia 14: 3–6.CrossRefGoogle Scholar
  28. Swets, J.A., W.P. Tanner, Jr., and T.G. Birdsall. 1961. Decision processes in perception. Psychological Review 68(5): 301–340.CrossRefGoogle Scholar
  29. Swinton, J. 2012. Dementia: Living in the memories of God. Grand Rapids, MI: Wm. B. Eerdmans Publishing Co.Google Scholar
  30. World Health Organization. 2017. Key facts. December 12. http://www.who.int/mediacentre/factsheets/fs362/en/. Accessed December 23, 2018.

Copyright information

© Journal of Bioethical Inquiry Pty Ltd. 2019

Authors and Affiliations

  1. 1.Department of PsychologyGeorgetown UniversityWashingtonUSA

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