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

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Illness Representations and Lived Experience in Early-Stage Dementia

Harman, Guy, Clare, Linda·2006·Qualitative Health Research

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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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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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Illness Representations and Lived Experience in Early-Stage Dementia

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