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Managing identity in early-stage dementia: maintaining a sense of being valued

  • E. STEEMAN (a1) (a2), J. TOURNOY (a3), M. GRYPDONCK (a2), J. GODDERIS (a4) and B. DIERCKX DE CASTERLÉ (a1)...

Abstract

Focusing on loss or maintenance of identity in persons with dementia may affect how they are approached and cared for. We performed a longitudinal study of 17 elderly persons with early-stage dementia with the aim of exploring changes in the experience of living with dementia. The major theme – a struggle to be valued – was clearly present in follow-up interviews. However, we observed a gradual shift in the concept of being valued: a shift from ‘being valued for what you do’ toward ‘being valued for who you are’. This progression represents a shift from performance-related core values of identity to those that are existentially related. These findings suggest that the self can be maintained by adjusting to loss.

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Corresponding author

Address for correspondence: Els Steeman, Faculty of Medicine and Health Sciences, Department of Public Health, Division of Nursing Science, Ghent University, De Pintelaan 185, Blok A, 9000 Gent, Belgium E-mail: els.steeman@ugent.be

References

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Bergsma, J. 2002. Lichamelijke Verstoring en Autonomie: een Medisch-Psychologische Bijdrage. Elsevier Gezondheidszorg, Maarssen, The Netherlands.
Burgener, S. and Dickerson-Putman, J. 1999. Assessing patients in the early stages of irreversible dementia: the relevance of patient perspectives. Journal of Gerontological Nursing, 25, 2, 3341.
Charmaz, K. 2000. Grounded Theory: objectivist and constructivist methods. In Denzin, N. and Lincoln, Y. (eds), The Handbook of Qualitative Research. Sage Publications, Thousand Oaks, California, 509–35.
Clare, L. 2003. Managing threats to self: awareness in early stage Alzheimer's disease. Social Science and Medicine, 57, 6, 1017–29.
Clare, L. 2004. The construction of awareness in early-stage Alzheimer's disease: a review of concepts and models. British Journal of Clinical Psychology, 43, Pt 2, 155–75.
Clare, L., Roth, I. and Pratt, R. 2005. Perceptions of change over time in early-stage Alzheimer's disease: implications for understanding awareness. Dementia, 4, 4, 487520.
Clare, L. and Shakespeare, P. 2004. Negotiating the impact of forgetting: dimensions of resistance in task-oriented conversations between people with early-stage dementia and their partners. Dementia, 3, 2, 211–32.
Cohen, D. and Eisdorfer, C. 2001. The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders. Second edition, W. W. Norton, New York.
Cortazzi, M. 1993. Narrative Analysis. The Falmer Press, London.
Fontana, A. and Smith, R. 1989. Alzheimer's disease victims: the ‘unbecoming’ of self and the normalization of competence. Sociological Perspectives, 32, 1, 3546.
Glaser, B. and Strauss, A. 1967. The Discovery of Grounded Theory: Strategies for Qualitative Research. Aldine De Gruyter, New York.
Harman, G. and Clare, L. 2006. Illness representations and lived experience in early-stage dementia. Qualitative Health Research, 16, 4, 484502.
Harris, P. and Sterin, G. 1999. Insider's perspective: defining and preserving the self of dementia. Journal of Mental Health and Aging, 5, 3, 241–56.
Hellström, I., Nolan, M. and Lundh, U. 2007. Sustaining couplehood: spouses’ strategies for living positively with dementia. Dementia, 6, 3, 383409.
Holst, G. and Hallberg, I. 2003. Exploring the meaning of everyday life, for those suffering from dementia. American Journal of Alzheimer's Disease and Other Dementias, 18, 6, 359–65.
Hughes, C., Berg, L., Danzinger, W., Coben, L. and Martin, R. 1982. A new clinical scale for the staging of dementia. British Journal of Psychiatry, 140, 6, 566–72.
Keady, J. and Nolan, M. 2003. The dynamics of dementia: working together, working separately, or working alone? In Nolan, M., Lundh, U., Grant, G. and Keady, J. (eds), Partnership in Family Care. Open University Press, Buckingham, UK, 1532.
Kimchi, J., Polivka, B. and Stevenson, J. 1991. Triangulation: operational definitions. Nursing Research, 40, 6, 364–6.
Kitwood, T. 1990. The dialectics of dementia: with particular reference to Alzheimer's disease. Ageing & Society, 10, 2, 177–96.
Lindemann Nelson, H. 2001. Damaged Identities, Narrative Repair. Cornell University Press, Ithaca, New York.
MacQuarrie, C. R. 2005. Experiences in early stage Alzheimer's disease: understanding the paradox of acceptance and denial. Aging and Mental Health, 9, 5, 430–41.
Mills, J., Bonner, A. and Francis, K. 2006. Adopting a constructivist approach to grounded theory: implications for research design. International Journal of Nursing Practice, 12, 813.
Nygard, L. and Borell, L. 1998. A life-world of altering meaning: expressions of the illness experience of dementia in everyday life over 3 years. Occupational Therapy Journal of Research, 18, 3, 109–36.
Pearce, A., Clare, L. and Pistrang, N. 2002. Managing sense of self: coping in the early stages of Alzheimer's disease. Dementia, 1, 2, 173–92.
Robinson, P., Giorgi, B., Ekman, S.-L. and Wahlund, L.-O. 2000. The experience of early dementia: a three-year longitudinal phenomenological case study. In Robinson, P. (ed.), Younger Persons with Suspected and Early Stage Dementia: Their Experiences, Concerns and Need for Support. Department of Clinical Neuroscience, Occupational Therapy and Elderly Care Research, Division of Geriatric Medicine, Karolinska Institutet, Stockholm, 128.
Sabat, S. 2001. The Experience of Alzheimer's Disease: Life Through a Tangled Veil. Blackwell Publishers, Oxford.
Sabat, S. and Harré, R. 1992. The construction and deconstruction of self in Alzheimer's disease. Ageing & Society, 12, 4, 443–61.
Sorensen, L., Waldorff, F. and Waldemar, G. 2008. Coping with mild Alzheimer's disease. Dementia, 7, 3, 287–99.
Steeman, E., Godderis, J., Grypdonck, M., De Bal, N. and Dierckx de Casterlé, B. 2007. Living with dementia from the perspective of older people: is it a positive story? Aging and Mental Health, 11, 2, 119–30.
Strauss, A. and Corbin, J. 1990. Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Sage, Newbury Park, California.
Svanstrom, R. and Dahlberg, K. 2004. Living with dementia yields a heteronomous and lost existence. Western Journal of Nursing Research, 26, 6, 671–87.
Van Dijkhuizen, M., Clare, L. and Pearce, A. 2006. Striving for connection: appraisal and coping among women with early-stage Alzheimer's disease. Dementia, 5, 1, 7394.
Wolverson Radbourne, E., Clarke, C. and Moniz-Cook, E. 2010. Remaining hopeful in early-stage dementia: a qualitative study. Aging and Mental Health, 14, 4, 450–60.

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