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
Overview
Integrity signals
Registry
Cites
Statistics
Verification
Claims the paper makes
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
In the citing paper
“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
Items 101–195 of 195
Killer, Thief or Companion? A Corpus-Based Study of Dementia Metaphors in UK Tabloids
Brookes, G. (2023) · Metaphor and Symbol · doi:10.1080/10926488.2022.2142472 · Cited by 18
‘Can't cook, won't cook’: men's involvement in cooking when their wives develop dementia
Boyle, G. (2013) · Journal of Gender Studies · doi:10.1080/09589236.2013.792728 · Cited by 18
Mazaheri, M., Eriksson, L. E., Nasrabadi, A. N., Sunvisson, H., & Heikkilä, K. (2014) · BMC Public Health · doi:10.1186/1471-2458-14-794 · Cited by 18
Subjektive Wahrnehmung und Bewältigung der Demenz im Frühstadium – SUWADEM
Stechl, E., Lämmler, G., Steinhagen‐Thiessen, E., & Flick, U. (2007) · Zeitschrift für Gerontologie und Geriatrie · doi:10.1007/s00391-007-0434-6 · Cited by 18
The experience of epilepsy in later life: A qualitative exploration of illness representations
Yennadiou, H., & Wolverson, E. (2017) · Epilepsy & Behavior · doi:10.1016/j.yebeh.2017.01.033 · Cited by 18
Bridi, L., Kaki, D. A., Albahsahli, B., Baker, D. A., Khan, X., Aljenabi, R., Bencheikh, N., Schiaffino, M. K., Moore, A. A., & Al‐Rousan, T. (2023) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2023.1083367 · Cited by 17
Perceptions of Cause and Control in People With Alzheimer’s Disease
Matchwick, C., Domone, R., Leroi, I., & Simpson, J. (2013) · The Gerontologist · doi:10.1093/geront/gnt014 · Cited by 17
What next? Experiences of social support and signposting after a diagnosis of dementia
Hagan, R. J. (2020) · Health & Social Care in the Community · doi:10.1111/hsc.12949 · Cited by 17
Gregg, J. E., Simpson, J., Nilforooshan, R., & Algorta, G. P. (2021) · Dementia · doi:10.1177/1471301221997291 · Cited by 18
Muijres, P., Weitkamp, K., Bodenmann, G., & Jenewein, J. (2023) · Frontiers in Psychology · doi:10.3389/fpsyg.2023.1056428 · Cited by 17
Awareness of disease in Alzheimer’s disease: what do patients realize about their own condition?
Gasparini, P., Santos, R. L., Lacerda, I. B., Johannessen, A., & Dourado, M. C. N. (2018) · Aging & Mental Health · doi:10.1080/13607863.2018.1488945 · Cited by 16
Use of hypnosis in the field of dementia: A scoping review
Wawrziczny, É., Buquet, A., & Picard, S. (2021) · Archives of Gerontology and Geriatrics · doi:10.1016/j.archger.2021.104453 · Cited by 17
Chalfont, G. E. (2011) · White Rose eTheses Online (University of Leeds, The University of Sheffield, University of York) · Cited by 15
“A peculiar time in my life”: making sense of illness and recovery with gynaecological cancer
Phillips, E., Montague, J., & Archer, S. (2017) · International Journal of Qualitative Studies on Health and Well-Being · doi:10.1080/17482631.2017.1364603 · Cited by 18
Burgon, C., Goldberg, S. E., van der Wardt, V., & Harwood, R. (2023) · Age and Ageing · doi:10.1093/ageing/afad031 · Cited by 15
Psychological support for people with dementia: A preliminary study
Birtwell, K., & Dubrow‐Marshall, L. (2017) · Counselling and Psychotherapy Research · doi:10.1002/capr.12154 · Cited by 14
Hamana, K., Quinn, L., Gambling, T. S., & Busse, M. E. (2019) · Disability and Rehabilitation · doi:10.1080/09638288.2019.1671501 · Cited by 14
Validation of an Informant-Reported Web-Based Data Collection to Assess Dementia Symptoms
Rockwood, K. J., Zeng, A., Leibman, C., Mucha, L., & Mitnitski, A. (2012) · Journal of Medical Internet Research · doi:10.2196/jmir.1941 · Cited by 14
Psychological processes in adapting to dementia: Illness representations among the IDEAL cohort.
Clare, L., Gamble, L. D., Martyr, A., Quinn, C., Litherland, R., Morris, R. G., Jones, I. R., & Matthews, F. E. (2021) · Psychology and Aging · doi:10.1037/pag0000650 · Cited by 13
Self-citationMiebach, L., Wolfsgruber, S., Frommann, I., Fließbach, K., Jessen, F., Buckley, R. F., & Wagner, M. (2017) · The Gerontologist · doi:10.1093/geront/gnx208 · Cited by 12
Preliminary Efficacy of Let’s Talk Tech: Technology Use Planning for Dementia Care Dyads
Berridge, C. W., Turner, N. R., Liu, L., Fredriksen‐Goldsen, K. I., Lyons, K. S., Demiris, G., Kaye, J. A., & Lober, W. B. (2023) · Innovation in Aging · doi:10.1093/geroni/igad018 · Cited by 16
Person–Environment Exchange Processes in Transition into Dementia: A Scoping Review
Niedoba, S., & Oswald, F. (2023) · The Gerontologist · doi:10.1093/geront/gnad034 · Cited by 12
Dunham, A., Mellor, D. J., Rand, E. H., McCabe, M. P., & Lewis, M. (2019) · Dementia · doi:10.1177/1471301219844659 · Cited by 11
Activities people with cognitive deficits want to continue mastering – A scoping study
Lindqvist, E., Vasiliou, A. P., Gomersall, T., Astell, A. J., Mihailidis, A., Sixsmith, A. J., & Nygård, L. (2016) · British Journal of Occupational Therapy · doi:10.1177/0308022616636895 · Cited by 10
Dixon, E., Anderson, J., Blackwelder, D. C., Radnofsky, M. L., & Lazar, A. (2022) · Journal of Medical Internet Research · doi:10.2196/35072 · Cited by 10
Cotter, V. T. (2009) · Holistic Nursing Practice · doi:10.1097/hnp.0b013e3181b66d4f · Cited by 10
Glidewell, L., Johnston, M., & Thomas, R. E. (2011) · Dementia · doi:10.1177/1471301211416611 · Cited by 10
Selling surveillance technology: semiotic themes in advertisements for ageing in place with dementia
Vermeer, Y., HIGGS, P. F. D., & Charlesworth, G. M. (2020) · Social Semiotics · doi:10.1080/10350330.2020.1767399 · Cited by 11
Rosenberg, L. (2009) · Figshare · Cited by 10
Participation as means for adaptation in dementia: a conceptual model
Górska, S., Maciver, D., & Forsyth, K. (2019) · Aging & Mental Health · doi:10.1080/13607863.2019.1695740 · Cited by 9
The experience of people with dementia in a social care group: Case study
Hochgraeber, I., Riesner, C., & Schoppmann, S. (2012) · Dementia · doi:10.1177/1471301212444300 · Cited by 9
Harland, J., Bath, P. A., Wainwright, A., & Seymour, J. (2017) · Aslib Journal of Information Management · doi:10.1108/ajim-08-2016-0141 · Cited by 9
Johnson, H. (2016) · The Qualitative Report · doi:10.46743/2160-3715/2016.2261 · Cited by 8
Qualitative research in psychogeriatrics
Black, B. S., & Rabins, P. V. (2006) · International Psychogeriatrics · doi:10.1017/s1041610206004534 · Cited by 8
Experiences of Family Relationships When a Family Member Has Dementia
Alm, A. K., Hellzèn, O., & Norbergh, K. (2014) · Open Journal of Nursing · doi:10.4236/ojn.2014.47055 · Cited by 7
Two Sides of the Same Coin? Patients’ and Carers’ Views of UK Memory Services
Hodge, S., Doncaster, E., Moniz-Cook, E. D., Purandare, N. B., & Orrell, M. W. (2013) · Aging Health · doi:10.2217/ahe.13.12 · Cited by 7
Bailey, A. (2020) · Communication & Medicine · doi:10.1558/cam.36150 · Cited by 6
Eilat, S. (2023) · Journal of Aging Studies · doi:10.1016/j.jaging.2023.101156 · Cited by 5
Engineer, M., Kot, S., & Dixon, E. (2023) · JMIR Formative Research · doi:10.2196/48143 · Cited by 5
Wang, M., Guan, X., Yan, J., Michael, N. A., Liu, X., Tan, R., Lv, X., Yan, F., & Cao, Y. (2023) · Frontiers in Public Health · doi:10.3389/fpubh.2023.1076030 · Cited by 4
Wawrziczny, É., Picard, S., Buquet, A., Traversac, E., Puisieux, F. L., Pasquier, F., Huvent‐Grelle, D., & Doba, K. (2022) · Journal of Alzheimer s Disease · doi:10.3233/jad-220430 · Cited by 3
‘All the world’s a stage’: Accounting for the dementia experience – insights from the IDEAL study
Hillman, A., Jones, I. R., Quinn, C., Nelis, S. M., Lamont, R. A., & Clare, L. (2019) · Qualitative Research · doi:10.1177/1468794119893607 · Cited by 3
Self-citationDehkhoda, A., Owens, R. G., & Malpas, P. J. (2020) · Dementia · doi:10.1177/1471301220922766 · Cited by 3
Mossabir, R. (2019) · Lancaster EPrints (Lancaster University) · doi:10.17635/lancaster/thesis/574 · Cited by 3
Pesonen, H., Remes, A. M., & Isola, A. (2014) · Journal of Nursing Education and Practice · doi:10.5430/jnep.v4n10p60 · Cited by 2
Metaphor as methodology: Methodological reflections on visualizing the dementia journey
Wiersma, E. C., Dupuis, S. L., Sameshima, P., Caffery, P., & Harvey, D. W. (2024) · Dementia · doi:10.1177/14713012241295954 · Cited by 2
Experience of People in Mild and Moderate Stages of Alzheimer’s Disease in Spain
Riquelme-Galindo, J., García‐Sanjuán, S., Lillo‐Crespo, M., & Martorell‐Poveda, M. (2020) · Aquichan · doi:10.5294/aqui.2020.20.4.4 · Cited by 2
Early Stage Dementia: Maximizing Self-Direction and Health
Cotter, V. T., & Teixeira, J. (2015) · Springer eBooks · doi:10.1007/978-3-319-18377-0_5 · Cited by 2
de Vries, K., Brooker, D. J. R., & Porter, T. C. (2010) · Cited by 2
Swall, A. (2015) · Figshare · Cited by 2
A SUITCASE OF MEMORIES: A SENSORY ETHNOGRAPHY OF TOURISM AND DEMENTIA WITH OLDER PEOPLE
Mullins, J. M. (2018) · ORCA Online Research @Cardiff (Cardiff University) · doi:10.13140/rg.2.2.35036.95366 · Cited by 2
Vogt, H. (2021) · transcript Verlag eBooks · doi:10.14361/9783839455784 · Cited by 2
Ando, H. (2019) · University of Liverpool · doi:10.17638/03061722 · Cited by 1
The Epistemic Innocence Project
Bortolotti, L. (2020) · Oxford University Press eBooks · doi:10.1093/oso/9780198863984.003.0001 · Cited by 1
Villaseñor, A. A., & Saidi, L. G. (2025) · Dementia · doi:10.1177/14713012251342630 · Cited by 2
Autobiographical Accounts of Early-Onset Alzheimer's Disease: Obituaries of the Living Dead?
Stanley, D. (2013) · uO Research (University of Ottawa) · doi:10.20381/ruor-3369 · Cited by 1
An Invitation to a Conversation on Quality of Life in Dementia
Kolanowski, A. M. (2011) · Journal of Gerontological Nursing · doi:10.3928/00989134-20110106-08 · Cited by 1
Yusuf, H. (2019) · TSpace (University of Toronto) · Cited by 1
An investigation into the impact of dementia on couples and how they cope with this
Foster, L. (2012) · The University of Bath Online Publications Store (The University of Bath) · Cited by 1
Evans, D. E. (2012) · Otago University Research Archive (University of Otago)
Chronic illness, disability and the politics of health
Denny, E., & Earle, S. (2009) · doi:10.1007/978-1-137-02125-0_2
Loitering in a liminal space : enactments of differing realities of hallucinations in dementia
Taylor, B. E. (2014) · ERA
The experience of falling of older people with dementia and their carers
McIntyre, A. (2012) · Brunel University Research Archive (BURA) (Brunel University London)
Huntington disease : death, psychiatry and health services
Halpin, M. (2010) · cIRcle (University of British Columbia) · doi:10.14288/1.0069583
Robinson, C. (2016) · UEA Digital Repository (University of East Anglia)
Music, dementia and everyday life within a community day care setting
Parker, E. (2016) · Open Research Exeter (University of Exeter)
Sheiban, L. (2014) · UWSpace (University of Waterloo)
Hulp bij het onderhouden van sociale relaties
Dijk, M. V. H.-V., & Boersma, P. (2017) · Bohn Stafleu van Loghum eBooks · doi:10.1007/978-90-368-2048-6_13
Herrera, M. E., Marcos, Y. Q., Sebastián, M. J. Q., & Pamies-Aubalat, L. (2018) · INFORMACIO PSICOLOGICA · doi:10.14635/ipsic.2018.116.1
Bortolotti, L. (2020) · Oxford University Press eBooks · doi:10.1093/oso/9780198863984.003.0002
The Significance of Epistemic Innocence
Bortolotti, L. (2020) · Oxford University Press eBooks · doi:10.1093/oso/9780198863984.003.0007
Bortolotti, L. (2020) · Oxford University Press eBooks · doi:10.1093/oso/9780198863984.003.0004
Bortolotti, L. (2020) · Oxford University Press eBooks · doi:10.1093/oso/9780198863984.003.0006
Bortolotti, L. (2020) · Oxford University Press eBooks · doi:10.1093/oso/9780198863984.003.0005
The impact of dementia on the selfhood and identity of women: a social constructionist approach
Scott, H. (2020) · ORCA Online Research @Cardiff (Cardiff University)
Vogt, H. (2021) · transcript Verlag eBooks · doi:10.1515/9783839455784-006
Current awareness in geriatric psychiatry
(2006) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.1516
Bortolotti, L. (2020) · Oxford University Press eBooks · doi:10.1093/oso/9780198863984.003.0003
การมชวตอยกบภาวะสมองเสอมระยะเรมตนของผสงอาย: การศกษารายกรณเชงคณภาพ
น้อยสีภูมิ, น. (2014) · Journal of Nursing Science Chulalongkorn University · doi:10.58837/chula.cuns.26.2.7
Bortolotti, L. (2020) · Oxford University Press eBooks · doi:10.1093/oso/9780198863984.002.0007
Bortolotti, L. (2020) · Oxford University Press eBooks · doi:10.1093/oso/9780198863984.002.0004
Bortolotti, L. (2020) · Oxford University Press eBooks · doi:10.1093/oso/9780198863984.002.0003
Muntigl, P., Plejert, C., & Jones, D. (2024) · Cambridge University Press eBooks · doi:10.1017/9781108339377.004
(Mis)alignment at Dementia Diagnosis
Dooley, J., & McCabe, R. (2024) · Cambridge University Press eBooks · doi:10.1017/9781108339377.006
“It may just be aging”: illness representations of Brazilians with Alzheimer’s disease
Gasparini, P., & Dourado, M. C. N. (2025) · Cadernos de Saúde Pública · doi:10.1590/0102-311xen173224
Jannesari, S., Love, B., & Lawrence, V. C. (2025) · Cambridge University Press eBooks · doi:10.1017/9781009028967.009 · Cited by 1
Besozzi, A. (2017) · theses.fr (ABES) · doi:10.70675/f92357ddz6f18z44f5z850azc3e731dfcb69
Tahara, R., FUJII, W., Watanabe, S., Koike, T., Tsujimoto, K., Takenaka, T., & Onda, S. (2026) · OTJR Occupational Therapy Journal of Research · doi:10.1177/15394492261492289
Daily life of persons with dementia and their spouses supported by a passive positioning alarm
Olsson, A.-K. (2013) · Örebro University (Örebro University)
Who joins a UK right to die society and why? : a study of members of Friends at the End (FATE)
Judd, M. B. (2012) · OpenGrey (Institut de l'Information Scientifique et Technique)
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
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review