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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
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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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