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The Identity Maintenance Work of Family Members of Persons with Alzheimer's Disease

Published online by Cambridge University Press:  31 March 2010

Hazel MacRae
Hazel MacRae*
Affiliation:
Mount Saint Vincent University
*
Requests for offprints should be sent to: / Les demandes de tirés-a-part doivent être adressées à : Hazel MacRae, Ph.D., Department of Sociology and Antrhopology, Mount Saint Vincent University, Halifax, Nova Scotia, B3M 2J6. (HazelMacRae@Msvu.ca)
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Abstract

Drawing on a qualitative study of families' experience with Alzheimer's disease, this paper examines family members' reaction to identity transformation or loss of self in the afflicted loved one, using a symbolic interactionist perspective. The findings show that family members find this aspect of the disease emotionally stressful. Refusing to let go of what remains of the loved one's former self, they employ a number of strategies in an effort to protect her/his social and self-identity. These strategies include concealing information, medicalizing inappropriate behaviour, fostering independence, managing appearance, and perceiving selectively.

Résumé

Se référant à une étude qualitative portant sur le vécu de diverses familles aux prises avec la maladie d'Alzheimer, cet article se penche sur la réaction des membres de la famille à la perte ou à la transformation de l'identité personnelle chez les proches qui en sont affligés, en faisant appel à une optique interactionniste symbolique. Les résultats montrent que les membres de la famille trouvent cet aspect de la maladie stressant sur le plan affectif. Refusant d'accepter que ce qui reste de l'ancien moi du proche parent disparaisse, ils recourent à diverses stratégies pour tenter de protéger son identité sociale et personnelle. Ces stratégies comprennent la dissimulation de l'information, la médicalisation de comportements inappropriés, l'insistance sur l'indépendance, la gestion de l'apparence physique et la perception sélective.

Keywords

Alzheimer's diseaseidentityfamilyidentity maintenanceagingmaladie d'Alzheimerfamilleidentitésauvegarde d'identitévieillissement
Type
Articles
Information
Canadian Journal on Aging / La Revue canadienne du vieillissement , Volume 21 , Issue 3 , Fall/Automne 2002 , pp. 405 - 415
Copyright
Copyright © Canadian Association on Gerontology 2002

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Footnotes

*The author would like gratefully to acknowledge that funding for this research was provided by The Alzheimer Society of Canada. A sincere thank you is also extended to the anonymous reviewers for their helpful suggestions and comments.

References

Anderson, R., & Bury, M. (Eds.). (1986). Introduction. In Anderson, R. & Bury, M. (Eds.), Living with chronic illness (pp. 1–13). London: Unwin Hyman.Google Scholar
Blum, N. (1991). The management of stigma by Alzheimer family caregivers. Journal of Contemporary Ethnography, 20, 263–284.CrossRefGoogle Scholar
Blumstein, P. (1994). The production of selves in personal relationships. In Kollock, P. & O'Brien, J. (Eds.), The production of reality (pp. 274–286). Thousand Oaks, CA: Pine Forge Press.Google Scholar
Cohen, D., & Eisdorfer, C. (1986). The loss of self. New York: W.W. Norton.Google Scholar
Charmaz, K. (1991). Good days, bad days. New Brunswick, NJ: Rutgers University Press.Google Scholar
Emerson, R.M. (1988). Contemporary field research. Prospect Heights, IL: Waveland Press.Google Scholar
Fontana, A., & Smith, R. (1989). Alzheimer disease victims: The unbecoming of self and the normalization of competence. Sociological Perspectives, 32, 35–46.CrossRefGoogle Scholar
Goffman, E. (1959). The presentation of self in everyday life. Garden City, NY: Doubleday & Co.Google Scholar
Goffman, E. (1963). Stigma. Englewood Cliffs, NJ: Prentice Hall.Google Scholar
Goffman, E. (1995). Face-work and interaction rituals. In Cahill, S.E. (Ed.), Inside social life (pp. 95–101). Los Angeles: Roxbury Publishing Co.Google Scholar
Gubrium, J. (1986). Oldtimers and Alzheimers: The descriptive organization of senility. Greenwich, CT: JAI Press.Google Scholar
Gubrium, J. (1991). The social preservation of mind: The Alzheimer's disease experience. In Hess, B.B. & Markson, E.W. (Eds.), Growing old in America (pp. 151–168). New Brunswick, NJ: Transaction Publishers.Google Scholar
Hewitt, J.P. (1991). Self and society (5th ed.). Boston: Allyn and Bacon.Google Scholar
Hewitt, J.P. (1976). Self and society (1st ed.). Boston: Allyn and Bacon.Google Scholar
Hewitt, J., & Stokes, R. (1994). Disclaimers. In Kollock, P. & O'Brien, J. (Eds.), The production of reality (pp. 239–251). Thousand Oaks, CA: Pine Forge Press.Google Scholar
Jones, E., Farina, A., Hastorf, A., Markus, H., Miller, D., & Scott, R. (1984). Social stigma. New York: W.H. Freeman & Co.Google Scholar
Kuhn, M.H., & McPartland, T.S. (1954). An empirical investigation of self attitudes. American Sociological Review, 19, 68–76.CrossRefGoogle Scholar
Lofland, J., & Lofland, H. (1995). Analyzing social settings. Belmont, CA: Wadsworth Publishing Co.Google Scholar
Lyman, K. (1993). Day in, day out with Alzheimer's: Stress in caregiving relationships. Philadelphia: Temple University Press.Google Scholar
Lyman, K. (1998). Living with Alzheimer's disease: The creation of meaning among persons with dementia. The Journal of Clinical Ethics, 9, 49–57.Google ScholarPubMed
Mace, N.L., & Rabins, P.V. (1995). The 36-hour day. New York: Warner Books.Google Scholar
McCall, G.J., & Simmons, J.L. (1978). Identities and interactions. New York: Free Press.Google Scholar
Mead, G.H. (1934). Mind, self, and society. Chicago: University of Chicago Press.Google Scholar
Sabat, S.R. (1998). Voices of Alzheimer's disease sufferers: A call for treatment based on personhood. The Journal of Clinical Ethics, 9, 35–48.CrossRefGoogle Scholar
Sabat, S.R., & Collins, M. (1999). Intact social, cognitive ability, and selfhood: A case study of Alzheimer's disease. American Journal of Alzheimer's Disease, 14, 11–19.CrossRefGoogle Scholar
Sabat, S.R., & Harre, R. (1992). The construction and deconstruction of self in Alzheimer's disease. Ageing and Society, 12, 443–461.CrossRefGoogle Scholar
Scott, M.B., & Lyman, S.M. (1994). Accounts. In Kollock, P. & O'Brien, J. (Eds.), The production of reality (pp. 219–238). Thousand Oaks, CA: Pine Forge Press.Google Scholar
Stone, G. (1981). Appearance. In Stone, G. & Farberman, H. (Eds.), Social psychology through symbolic interaction. New York: John Wiley & Sons.Google Scholar
Strauss, A., & Corbin, J. (1990). Basics of qualitative research. Newbury Park, CA: Sage Publications.Google Scholar
Strauss, A. (1969). Mirrors and masks. Mill Valley, CA: Sociology Press.Google Scholar
Taylor, S.J., & Bogdan, R. (1984). Introduction to qualitative research methods. New York: John Wiley & Sons.Google Scholar
Vittoria, A.K. (1998). Preserving selves: Identity work and dementia. Research on Aging, 20, 91–156.CrossRefGoogle Scholar