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Memorabilities: enduring relationships, memories and abilities in dementia

Published online by Cambridge University Press:  18 June 2007

RAEWYN BASSETT  and
JANICE E. GRAHAM
RAEWYN BASSETT*
Affiliation:
School of Occupational Therapy, Dalhousie University, Halifax, Nova Scotia, Canada.
JANICE E. GRAHAM*
Affiliation:
Department of Bioethics, Dalhousie University, Halifax, Nova Scotia, Canada.
*
Address for correspondence: Raewyn Bassett, School of Occupational Therapy, Forrest Building, Room 215, 5869 University Avenue, Dalhousie University, Halifax, Nova Scotia B3H 3J5, Canada. E-mail: rbassett@dal.ca
Janice Graham, Department of Bioethics, 5849 University Avenue, Dalhousie University, Halifax, Nova Scotia B3H 4H7, Canada. E-mail: Janice.Graham@dal.ca
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Abstract

This paper reports the findings of a one-year qualitative investigation of the memories and activities of people with mild to moderate Alzheimer's. We observed and interviewed 58 patient-carer dyads during home visits. The progression of the dementia symptoms was documented, and information was collected on social-relational events, as well as accounts of awareness, attention and anticipation, which are often neglected in research that focuses on the activities of daily living. The participants identified problems that were important to them; those with Alzheimer's disease were aware that they were not as attentive as they once had been, that they could no longer rely upon the memory of, or consciously recollect and relive, a past experience, and that the future was more difficult to anticipate. The participants' accounts describe relationships, memories and abilities – or ‘memor-abilities’ – of a past and their effects on their present and future. Our findings differ from clinical representations of memory located solely in the individual. Instead, memories are regarded as a synergistic package of both social and individual meanings that ‘leak’ between the two. What experimental psychologists interpret as systems and processes are played out in the everyday world of people with Alzheimer's disease as contextual, bounded and interdependent states of awareness, attention and anticipation. We maintain that memory is simultaneously individual and social, and that memorabilities are shared, co-constructed events and experiences in the past, present and future.

Keywords

memoryAlzheimer's diseaseawarenessanticipationqualitative methods
Type
Research Article
Information
Ageing & Society , Volume 27 , Issue 4 , July 2007 , pp. 533 - 554
Copyright
Copyright © Cambridge University Press 2007

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References

Archer, M. S. 2000. Being Human: The Problem of Agency. Cambridge University Press, Cambridge.CrossRefGoogle Scholar
Baddeley, A. D. 2000. The episodic buffer: a new component of working memory? Trends in Cognitive Science, 4, 11, 417–22.CrossRefGoogle ScholarPubMed
Bal, M., Crewe, J. and Spitzer, L. (eds) 1999. Acts of Memory: Cultural Recall in the Present. University Press of New England, Hanover, New Hampshire.Google Scholar
Basting, A. 2003. Looking back from loss: views of the self in Alzheimer's disease. Journal of Aging Studies, 17, 1, 87–99.CrossRefGoogle Scholar
Boyatzis, R. E. 1998. Transforming Qualitative Information: Thematic Analysis and Code Development. Sage, Thousand Oaks, California.Google Scholar
Brekhus, W. 1998. A sociology of the unmarked: redirecting our focus. Sociological Theory, 16, 1, 34–51.CrossRefGoogle Scholar
Butler, J. 2001. Giving an account of oneself. Diacritics, 31.4, 22–40.CrossRefGoogle Scholar
Callero, P. 2003. The sociology of the self. Annual Review of Sociology, 29, 115–33.CrossRefGoogle Scholar
Cohen-Mansfield, J., Golander, H. and Arnheim, G. 2000. Self-identity in older persons suffering from dementia: preliminary results. Social Science and Medicine, 51, 3, 381–94.CrossRefGoogle ScholarPubMed
Emirbayer, M. and Mische, A. 1998. What is agency? American Journal of Sociology, 103, 4, 962–1023.CrossRefGoogle Scholar
Ewing, K. P. 1990. The illusion of wholeness: culture, self, and the experience of inconsistency. Ethos, 18, 3, 251–78.CrossRefGoogle Scholar
Feinstein, A. R. 1987. Clinimetrics. Yale University Press, New Haven, Connecticut.CrossRefGoogle Scholar
Folstein, M. F., Folstein, S. E. and McHugh, P. R. 1975. ‘Mini-mental state’: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 3, 189–98.CrossRefGoogle Scholar
Frisch, M. 1989. American history and the structure of collective memory. Journal of American History, 75, 4, 1130–55.CrossRefGoogle Scholar
Giddens, A. 1991. Modernity and Self-Identity: Self and Society in the Late Modern Age. Stanford University Press, Stanford, California.Google Scholar
Gilboa, A. 2004. Autobiographical and episodic memory – one and the same? Evidence from prefrontal activation in neuroimaging studies. Neuropsychologia, 42, 10, 1336–49.CrossRefGoogle ScholarPubMed
Graham, J. 2006. Diagnosing dementia: epidemiological and clinical data as cultural text. In Leibing, A. and Cohen, L. (eds) Thinking about Dementia: Culture, Loss and the Anthropology of Senility. Rutgers University Press, New York, 80–105.CrossRefGoogle Scholar
Graham, J. E. and Bassett, R. 2006. Reciprocal relations: the recognition and co-construction of caring with Alzheimer's disease. Journal of Aging Studies, 20, 4, 335–49.CrossRefGoogle Scholar
Graham, J. E. and Bassett, R. 2002. Final Report, Qualitative: Defining the Expectations and Effects of Treatment in Patients with Alzheimer's Disease. Unpublished report to Pfizer Inc., Geriatric Medicine Research Unit, Dalhousie University, Halifax, Nova Scotia.Google Scholar
Graham, J. E., Mitnitski, A. B., Mogilner, A. J., Gauvreau, D. and Rockwood, K. 1996. Symptoms and signs in dementia: synergy and antagonism. Dementia, 7, 6, 331–5.Google ScholarPubMed
Graham, J. E., Mitnitski, A. B., Mogilner, A. J. and Rockwood, K. 1999. The dynamics of cognitive aging: distinguishing functional age and disease from chronological age in a population. American Journal of Epidemiology, 150, 10, 1045–54.CrossRefGoogle ScholarPubMed
Hacking, I. 1995. The sciences of memory. In Hacking, I. (eds) Rewriting the Soul: Multiple Personality and the Sciences of Memory. Princeton University Press, Princeton, New Jersey, 198–209.CrossRefGoogle Scholar
Hacking, I. 1996. The looping effects of human kinds. In Sperber, D., Premack, D. and Premack, A. J. (eds) Causal Cognition. Clarendon, Oxford, 351–83.CrossRefGoogle Scholar
Herskovitz, E. 1995. Struggling over subjectivity: debates about the ‘self’ and Alzheimer's disease. Medical Anthropology Quarterly, 9, 2, 146–64.CrossRefGoogle Scholar
Klein, S. B., Cosmides, L. and Costabile, K. A. 2003. Preserved knowledge of self in a case of Alzheimer's dementia. Social Cognition, 21, 1, 157–65.CrossRefGoogle Scholar
Klein, S. B., Chan, R. L. and Loftus, J. 1999. Independence of episodic and semantic self-knowledge: the case from autism. Social Cognition, 17, 4, 413–36.CrossRefGoogle Scholar
Kontos, P. 2004. Ethnographic reflections on selfhood, embodiment and Alzheimer's disease. Ageing & Society, 24, 6, 829–49.CrossRefGoogle Scholar
Kontos, P. 2006. Embodied selfhood: an ethnographic exploration of Alzheimer's disease. In Leibing, A. and Cohen, L. (eds) Thinking About Dementia: Culture, Loss and the Anthropology of Senility. Rutgers University Press, New York, 195–217.CrossRefGoogle Scholar
Landis, R. J. and Koch, G. G. 1977. The measurement of observer agreement for categorical data. Biometrics, 33, 1, 159–74.CrossRefGoogle ScholarPubMed
Li, R. and Orleans, M. 2002. Personhood in a world of forgetfulness: an ethnography of the self-process among Alzheimer's patients. Journal of Aging and Identity, 7, 4, 227–44.CrossRefGoogle Scholar
Luborsky, M. R. 1994. The identification and analysis of themes and patterns. In Gubrium, J. F. and Sankar, A. (eds) Qualitative Methods in Aging Research. Sage, Thousand Oaks, California, 189–210.Google Scholar
MacRae, H. 2002. The identity maintenance work of family members of persons with Alzheimer's disease. Canadian Journal on Aging, 21, 3, 405–15.CrossRefGoogle Scholar
Mead, G. H. 1934. Mind, Self and Society. University of Chicago Press, Chicago.Google Scholar
Mills, M. A. 1997. Narrative identity and dementia: a study of emotion and narrative in older people with dementia. Ageing & Society, 17, 6, 673–98.CrossRefGoogle Scholar
Moos, I. and Björn, A. 2006. Use of life story in the institutional care of people with dementia: a review of intervention studies. Ageing & Society, 26, 3, 431–54.CrossRefGoogle Scholar
Moran, J. 2001. Aging and identity in dementia narratives. Cultural Values, 5, 3, 245–60.CrossRefGoogle Scholar
Park, D. C. and Gutchess, A. H. 2002. Aging, cognition, and culture: a neuroscientific perspective. Neuroscience and Biobehavioural Reviews, 26, 7, 859–67.CrossRefGoogle ScholarPubMed
Park, D. C., Nisbett, R. and Hedden, T. 1999. Aging, culture and cognition. Journal of Gerontology: Psychological Sciences, 54B, 2, 75–84.CrossRefGoogle Scholar
Richards, T. and Richards, L. (1997). QSR NUD*IST revision 4. Qualitative Solutions and Research Pty Ltd, Melbourne, Victoria, Australia.Google Scholar
Rimmon-Kenan, S. 2002. The story of ‘I’: illness and narrative identity. Narrative, 10, 1, 9–27.CrossRefGoogle Scholar
Rockwood, K., Graham, J. E. and Fay, S. 2002. Goal setting and attainment in Alzheimer's disease patients treated with donepezil. Journal of Neurology, Neurosurgery and Psychiatry, 73, 5, 500–7.CrossRefGoogle ScholarPubMed
Rose, S. 1993. The Making of Memory: From Molecules to Mind. Bantam, London.Google Scholar
Sabat, S. R. and Harré, R. 1992. The construction and deconstruction of self in Alzheimer's disease. Ageing & Society, 12, 4, 443–61.CrossRefGoogle Scholar
Santamariá, A. and de la Mata, M. L. 2002. Referential perspective and instruction: a study on teacher-student interaction and text-remembering. Instructional Science, 30, 2, 129–52.CrossRefGoogle Scholar
Schacter, D. L., Wagner, A. D. and Buckner, R. L. 2000. Memory systems of 1999. In Tulving, E. and Craik, F. I. M. (eds) The Oxford Handbook of Memory. Oxford University Press, New York, 627–43.CrossRefGoogle Scholar
Shilling, C. 1993. The Body and Social Theory. Sage, London.Google Scholar
Silverstein, M. and Urban, G. 1996. The natural history of discourse. In Silverstein, M. and Urban, G. (eds) Natural Histories of Discourse. Chicago University Press, Chicago, 1–17.Google Scholar
Swidler, A. 1986. Culture in action: symbols and strategies. American Sociological Review, 51, 2, 273–86.CrossRefGoogle Scholar
Tulving, E. 1972. Episodic and semantic memory. In Tulving, E. and Donaldson, W. (eds) Organization of Memory. Academic, New York, 381–401.Google Scholar
Tulving, E. 1983. Elements of Episodic Memory. Clarendon, Oxford.Google Scholar
Tulving, E. 2002. Episodic memory: from mind to brain. Annual Review of Psychology, 53, 26–53.CrossRefGoogle Scholar
White, G. M. 2000. Emotional remembering: the pragmatics of national memory. Ethos, 27, 4, 505–29.CrossRefGoogle Scholar
Zerubavel, E. 1996 a. Lumping and splitting: notes on social classification. Sociological Forum, 11, 3, 421–33.CrossRefGoogle Scholar
Zerubavel, E. 1996 b. Social memories: steps to a sociology of the past. Qualitative Sociology, 19, 3, 286–91.CrossRefGoogle Scholar
Zerubavel, E. 1997. Social Mindscapes: An Invitation to Cognitive Sociology. Harvard University Press, Cambridge, Massachusetts.Google Scholar