The DOI matches its Crossref record; 48 of the 49 references it cites were found in a registry or an index.
Illness Representations and Lived Experience in Early-Stage Dementia
Abstract
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
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“Research has shown that people living with dementia often prefer to be more involved in decision-making than they are (Miller et al., 2016), and their preferences and concerns can go unrepresented (Whitlatch et al., 2005; Harman and Clare, 2006; de Boer et al., 2007; Menne and Whitlatch, 2007).”
From Algorithmic harms and digital ageism in the use of surveillance technologies in nursing homes (2022) · cites this paper as Harman and Clare, 2006
Citations
Cites
A New Clinical Scale for the Staging of Dementia
Hughes, C. P., Berg, L., Danziger, W., Coben, L. A., & Martin, R. L. (1982) · British Journal of Psychiatry · doi:10.1192/bjp.140.6.566 · Cited by 7,056
Evolving guidelines for publication of qualitative research studies in psychology and related fields
Elliott, R., Fischer, C. T., & Rennie, D. L. (1999) · British Journal of Clinical Psychology · doi:10.1348/014466599162782 · Cited by 2,491
The Life Review: An Interpretation of Reminiscence in the Aged
Butler, R. N. (1963) · Psychiatry · doi:10.1080/00332747.1963.11023339 · Cited by 2,010
Doing Interpretative Phenomenological Analysis
Smith, J., Jarman, M., & Osborn, M. (1999) · SAGE Publications Ltd eBooks · doi:10.4135/9781446217870.n14 · Cited by 1,904
Reminiscence therapy for dementia
Woods, B. T., O’Philbin, L., Farrell, E. M., Spector, A. E., & Orrell, M. W. (2018) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd001120.pub3 · Cited by 880
(2001) · Choice Reviews Online · doi:10.5860/choice.38-5852 · Cited by 696
Managing threats to self: awareness in early stage Alzheimer's disease
Clare, L. (2003) · Social Science & Medicine · doi:10.1016/s0277-9536(02)00476-8 · Cited by 451
Self-citationReminiscence therapy for dementia
Woods, B. T., Spector, A. E., Jones, C. A., Orrell, M. W., & Davies, S. P. (2005) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd001120.pub2 · Cited by 370
Charmaz, K. (2000) · Handbook of Social Studies in Health and Medicine · doi:10.4135/9781848608412.n18 · Cited by 352 · cited 2×
“The vulnerability of self in this context is also derived from potential devaluation by society, the “moral cast” of continuing illness (Charmaz, 2000).”
BackgroundDisclosing a diagnosis of dementia: a systematic review.
Bamford, C., Lamont, S., Eccles, M., Robinson, L., May, C., & Bond, J. (2004) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.1050 · Cited by 284
Research works printed but not linked: 6
- Henderson, C., 1998, Partial view: An Alzheimer's journal
- Kleinman, A., 1994, Health and social change in international perspective, 129
- Truscott, M., 2003, Alzheimer's Care Quarterly, 4, 11
- Waxler, N. E., 1981, Social contexts of health, illness & patient care, 169
- Williams, G. H., 1993, Worlds of illness: Biological and cultural perspectives on health and disease, 92
- Yale, R., 1999, Generations, 23, 57
Cited by
Sorted by citations
Bunn, F., Goodman, C., Sworn, K., Rait, G., Brayne, C., Robinson, L., McNeilly, E., & Iliffe, S. (2012) · PLoS Medicine · doi:10.1371/journal.pmed.1001331 · Cited by 284
Suffering from dementia – the patient's perspective: a review of the literature
de Boer, M. E., Hertogh, C. M. P. M., Dröes, R., Riphagen, I. I., Jonker, C., & Eefsting, J. A. (2007) · International Psychogeriatrics · doi:10.1017/s1041610207005765 · Cited by 236
Emotional impact of dementia diagnosis: Exploring persons with dementia and caregivers’ perspectives
Aminzadeh, F., Byszewski, A. M., Molnar, F., & Eisner, M. (2007) · Aging & Mental Health · doi:10.1080/13607860600963695 · Cited by 228
The transition to dementia – individual and family experiences of receiving a diagnosis: a review
Robinson, L. A., Gemski, A., Abley, C., Bond, J., Keady, J. D., Campbell, S., Samsi, K., & Manthorpe, J. (2011) · International Psychogeriatrics · doi:10.1017/s1041610210002437 · Cited by 170
Whitlatch, C. J., & Orsulic‐Jeras, S. (2017) · The Gerontologist · doi:10.1093/geront/gnx162 · Cited by 161
Metadata
- Authors
- Harman, G., & Clare, L.
- Affiliations
- Hillingdon Hospital (GB)
- Bangor University (GB)
- ORCID
- Clare, Linda
- Venue
- Qualitative Health Research
- Publisher
- SAGE Publications
- Published
- 2006-04
- Volume
- 16
- Issue
- 4
- Pages
- 484-502
- ISSN
- 1049-7323 (ISSN-L)
- 1552-7557
- OpenAlex
- W2135481687
- Cited by
- 196
- References
- 49
- Citations by year
- 2026: 1 · 2025: 3 · 2024: 3 · 2023: 9 · 2022: 4 · 2021: 7 · 2020: 23 · 2019: 16 · 2018: 9 · 2017: 12 · 2016: 18 · 2015: 7 · 2014: 12 · 2013: 18 · 2012: 15
- FWCI
- 2.77
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Qualitative Health Research (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Social Sciences › Psychology › Developmental and Educational Psychology › Identity, Memory, and Therapy
- Health Sciences › Health Professions › General Health Professions › Health, psychology, and well-being
- Keywords
- illness representations, early-stage dementia, lived experience, sense of identity, chronic disease
- MeSH terms
- Adaptation, Psychological, Aged, Alzheimer Disease, Dementia, Female, Humans, Interviews as Topic, Male, Middle Aged, Self Concept, Personal Autonomy, Qualitative Research
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