The self-regulation model of illness behavior provides a framework for understanding how threats to self from chronic illness can be managed and proposes a significant role for illness representations. This framework can assist in illuminating the experience of developing dementia but has not previously been considered in this context. The authors conducted semistructured interviews with 9 people who had a diagnosis of early-stage dementia to explore illness representations and how these related to daily lived experience, using interpretative phenomenological analysis (IPA). Two overarching themes emerged: It will get worse, reflecting an understanding of dementia; and I want to be me, reflecting a desire to maintain sense of identity. Participants faced a number of personal and interpersonal dilemmas. The authors present a preliminary model of the way in which illness representations contribute to the lived experience of early-stage dementia
Bamford, C., Lamont, S., Eccles, M., Robinson, L., Mar, C., & Bond, J. (2004). Disclosing a diagnosis of dementia: A systematic review. International Journal of Geriatric Psychiatry, 19, 151-169.
2.
Barrowclough, C., Lobban, F., Hatton, C., & Quinn, J. (2001). An investigation of models of illness in carers of schizophrenia patients using illness perception questionnaire. British Journal of Clinical Psychology, 40, 371-385.
3.
Bryden, C. (2005). Dancing with dementia. London: Jessica Kingsley.
4.
Butler, R. N. (1963). The life review: Aninterpretation of reminiscence in the aged. Psychiatry, 26, 65-76.
5.
Carradice, A., Shankland, M. C.,& Beail, N. (2002). Aqualitative study of the theoretical models used by UK mental health nurses to guide their assessments with family caregivers of people with dementia. International Journal of Nursing Studies, 39, 17-26.
6.
Charmaz, K. (2000). Experiencing chronic illness. In G. L. Albrecht, R. Fitzpatrick, & S. C. Scrimshaw (Eds.), The handbook of social studies in health and medicine(pp. 277-292). London: Sage.
7.
Cheston, R., Jones, K., & Gilliard, J. (2003). Group psychotherapy and people with dementia. Aging and Mental Health, 7, 452-461.
8.
Clafferty, R. A. (1999). Dignity in knowledge: Informing patients with Alzheimer's disease about their diagnosis. Psychiatric Bulletin, 23, 394-396.
9.
Clare, L. (2003a). Cognitive training and cognitive rehabilitation for people with early-stage dementia. Reviews in Clinical Gerontology, 13, 75-83.
10.
Clare, L. (2003b). Managing threats to self: Awareness in early-stage Alzheimer's disease. Social Science& Medicine, 57, 1017-1029.
11.
Clare, L. (2004). The construction of awareness in early-stage Alzheimer's disease: Areview of concepts and models. British Journal of Clinical Psychology, 43, 155-176.
12.
Clare, L.,& Shakespeare, P. (2004). Negotiating the impact of forgetting: Dimensions of resistance in taskoriented conversations between people with early-stage dementia and their partners. Dementia, 3, 211-232.
13.
Cohen-Mansfield, J., Golander, H., & Arnheim, G. (2000). Self-identity in older persons suffering from dementia: Preliminary results. Social Science & Medicine, 51, 381-394.
14.
Das, V. (1994). Moral orientations to suffering: Legitimation, power, and healing. In L. C. Chen, A. Kleinman, & N. C. Ware (Eds.), Health and social change in international perspective(pp. 139-167). Boston: Harvard University Press.
15.
Davis, H. J. (2004). Dementia: Sociological and philosophical constructions. Social Science & Medicine, 58, 369-378.
16.
Debaggio, T. (2002). Losing my mind: An intimate look at life with Alzheimer's. New York: Free Press.
17.
Earll, L. (1994). Coping with chronic neurological illness: An analysis using self-regulation theory. Unpublished doctoral dissertation, University of London, United Kingdom.
18.
Earll, L., Johnston, M., & Mitchell, E. (1993). Coping with motor neurone disease: An analysis using selfregulation theory. Palliative Medicine, 7, 21-30.
19.
Elliott, R., Fischer, C., & Rennie, D. (1999). Evolving guidelines for publication of qualitative research studies in psychology and related fields. British Journal of Clinical Psychology, 38, 215-229.
20.
Gillies, B. (2000). A memory like clockwork: Accounts of living through dementia. Aging and Mental Health, 4, 366-374.
21.
Gubrium, J. F. (1984). Structuring and destructuring the course of illness: The Alzheimer's disease experience. Sociology of Health and Illness, 9, 1-24.
22.
Gump, B. B., Matthews, K. A., Scheier, M. F., Schulz, R., Bridges, M. W., & Magoven, G. J. (2001). Illness representations according to age and effects on health behaviours following coronary artery bypass graft surgery. Journal of the American Geriatric Society, 49, 284-289.
23.
Haugbølle, L. S., Sørensen, E. W., & Henriksen, H. H. (2002). Medication and illness-related factual knowledge, perceptions and behavior in angina pectoris patients. Patient Education and Counselling, 47, 281-289.
24.
Heijmans, M. (1999). The role of patients' illness representations in coping and functioning with Addison's disease. British Journal of Health Psychology, 4, 137-149.
25.
Henderson, C. (1998). Partial view: An Alzheimer's journal. Dallas, TX: Southern Methodist University Press.
26.
Hughes, C. P., Berg, L., Danziger, W. L., Coben, L. A., & Martin, R. L. (1982). Anew clinical scale for the staging of dementia. British Journal of Psychiatry, 140, 566-572.
27.
Killick, J., & Allan, K. (2001). Communication and the care of people with dementia. Buckingham, UK: Open University Press.
28.
Kleinman, A. (1994). Ananthropological perspective on objectivity: Observation, categorization, and the assessment of suffering. In L. C. Chen, A. Kleinman, & N. C. Ware (Eds.), Health and social change in international perspective(pp. 129-138). Boston: Harvard University Press.
29.
Leventhal, H., Benyamini, Y., Brownlee, S., Diefenbach, M., Leventhal, E. A., Patrick-Miller, L., et al. (1997). Illness representations: Theoretical foundations. In K. J. Petrie & J. A. Weinman (Eds.), Perceptions of health and illness(pp. 19-45). Amsterdam: Harwood Academic.
30.
Leventhal, H., Nerenz, D.,& Steele, D. J. (1984). Illness representations and coping with health threats. In S. Baum, S. E. Taylor, & J. E. Singer (Eds.), Handbook of health psychology(Vol. 4, pp. 219-252). Hillsdale, NJ: Lawrence Erlbaum.
31.
Marzanski, M. (2000). Would you like to know what is wrong with you?: On telling the truth to patients with dementia. Journal of Medical Ethics, 26, 108-113.
32.
Miller, B. L., Seely, W. W., Mychack, P., Rosen, H. J., Mena, I.,& Boone, K. (2001). Neuroanatomy of the self: Evidence from patients with frontotemporal dementia. Neurology, 57, 817-821.
33.
Pearce, A., Clare, L., & Pistrang, N. (2002). Managing sense of self: Coping in the early stages of Alzheimer's disease. Dementia, 1, 173-192.
34.
Pinner, G. (2000). Truth telling and the diagnosis of dementia. British Journal of Psychiatry, 176, 514-515.
35.
Proveda, A. M.(2003). Ananthropological perspective of Alzheimer disease. Geriatric Nursing, 24, 26-31.
36.
Roberts, J. S.,& Connell, C. M. (2000). Illness representations among first-degree relatives of people with Alzheimer disease. Alzheimer Disease and Associated Disorders, 14, 129-136.
37.
Romero, B., & Wenz, M. (2001). Self-maintenance therapy in Alzheimer's disease. Neuropsychological Rehabilitation, 11, 333-355.
38.
Sabat, S. R. (1994). Excess disability and malignant social psychology: Acase study of Alzheimer's disease. Journal of Community and Applied Social Psychology, 4, 157-166.
39.
Shenk, D., Davis, B., Peacock, J. R.,& Moore, L. (2002). Narratives and self-identity in later life: Two rural American older women. Journal of Aging Studies, 16, 401-413.
40.
Smith, J. A., Flowers, P.,& Osborn, M. (1997). Interpretative phenomenological analysis and the psychology of health and illness. In L. Yardley (Ed.), Material discourses of health and illness(pp. 68-91). London: Routledge.
41.
Smith, J. A., Jarman, M., & Osborn, M. (1999). Doing interpretative phenomenological analysis. In M. Murray & K. Chamberlain (Eds.), Qualitative health psychology: Theories and methods(pp. 218-240). London: Sage.
42.
Sullivan, K., & O'Connor, F. (2001). Should a diagnosis of Alzheimer's disease be disclosed?Aging and Mental Health, 5, 340-348.
43.
Truscott, M. (2003). Life in the slow lane. Alzheimer's Care Quarterly, 4, 11-17.
44.
Waxler, N. E. (1981). Learning to be a leper: A case study in the social construction of illness. In E. G. Mischler, L. R. Amara Singham, S. T. Hauser, R. Liem, S. D. Osherson,& N. Waxler (Eds.), Social contexts of health, illness & patient care(pp. 169-194). New York: Cambridge University Press.
45.
Williams, G. H. (1993). Chronic illness andthepursuit of virtue in everyday life. InA. Radley (Ed.), Worlds of illness: Biological and cultural perspectives on health and disease(pp. 92-108). London: Routledge.
46.
Woods, B., Spector, A., Jones, C., Orrell, M., & Davies, S. (2005). Reminiscence therapy for dementia. Cochrane Database of Systematic Reviews, 2. Retrieved January 19, 2006, from http://www.mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD001120/frame.html
47.
Yale, R. (1999). Support groups and other services for individuals with early-stage Alzheimer's disease. Generations, 23, 57-61.
