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Cited by 196Dementia and Cognitive Impairment ResearchIdentity, Memory, and TherapyHealth, psychology, and well-being

Illness representations and lived experience in early-stage dementia

Harman, Guy, Clare, Linda·2006·Qualitative Health Research
DOI 10.1177/1049732306286851
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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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  • People living with dementia often prefer to be more involved in decision-making than they are, and their preferences and concerns can go unrepresented.

    “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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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
DOI
10.1177/1049732306286851
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
Licence
journals.sagepub.com/page/policies/text-and-data-mining-license (tdm)
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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