Item Details

Dementia and identity: A corpus-based study of an online dementia forum

Issue: Vol 15 No. 3 (2018)

Journal: Communication & Medicine

Subject Areas: Healthcare Communication Linguistics

DOI: 10.1558/cam.36150


Dementia is often interpreted as a loss of identity because of the changes it causes in memory, mood and behaviour. Such a binary interpretation impacts the quality of care an individual receives and reinforces stigma surrounding the condition. In this paper, an approach informed by social constructionism considers how people with dementia on an online forum discursively construct identities in relation to dementia. Utilising the tools of corpus linguistics, the study examines six-months of forum contributions, totalling 120,000 words. A close analysis of the keywords dementia, Alz, illness and disease reveals how forum users position themselves around and despite dementia. A collective identity is constructed which asserts shared experiences and the ability to empathise, while in other instances linguistic choices distance the individual from dementia, advocating a distinct, non-dementia identity. The paper illuminates some of the ways that people with dementia negotiate the complexities of identity construction while navigating the challenges of living with chronic illness.

Author: Annika Bailey

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References :

Adolphs, Svenja, Brian Brown, Ronald Carter, Paul Crawford and Opinder Sahota (2004) Applying corpus linguistics in a health care context. Journal of Applied Linguistics 1 (1): 9-28.


Alzheimer’s Association (2018) What is Alzheimer’s? Available online:


Alzheimer’s Society (2017) The Dementia Guide. Available online:


Angouri, Jo and Tessa Sanderson (2016) ‘You’ll find lots of help here’: Unpacking the function of an online rheumatoid arthritis (RA) forum. Language and Communication 46: 1-13.


Baker, Paul (2006) Using Corpora in Discourse Analysis. London: Continuum.


Beard, Renée L. (2004) In their voices: Identity preservation and experiences of Alzheimer’s disease. Journal of Aging Studies 18 (4): 415-428.


Beard, Renée L. (2016) Living with Alzheimer’s: Managing Memory Loss, Identity and Illness. New York: NYU Press.


Beard, Renée L. and Patrick J. Fox (2008) Resisting social disenfranchisement: Negotiating collective identities and everyday life with memory loss. Social Science and Medicine 66 (7): 1509-1520.


Benwell, Bethan and Elizabeth Stokoe (2006) Discourse and Identity. Edinburgh: Edinburgh University Press.


Bucholtz, Mary and Kira Hall (2005) Identity and interaction: A sociocultural linguistic approach. Discourse Studies 7 (4-5): 585-614.


Burr, Vivien (2015) Social Constructionism. London: Routledge.


Butler, Judith (1990) Gender Trouble: Feminism and the Subversion of Identity. New York: Routledge.


Caddell, Lisa S. and Linda Clare (2010) The impact of dementia on self and identity: A systematic review. Clinical Psychology Review 30 (1): 113-126.


Caddell, Lisa S. and Linda Clare (2011) I’m still the same person: The impact of early-stage dementia on identity. Dementia 10 (3): 379-398.


Cassell, Eric J. (1976a) Disease as an ‘it’: Concepts of disease revealed by patients’ presentation of symptoms. Social Science and Medicine 10 (3-4): 143-146.


Cassell, Eric J. (1976b) Illness and disease. The Hastings Center Report 6 (2): 27-37.


Charmaz, Kathy (1991) Good Days, Bad Days: The Self in Chronic Illness and Time. New Brunswick, NJ: Rutgers University Press.


Charmaz, Kathy (1995) The body, identity, and self: Adapting to impairment. Sociological Quarterly 36 (4): 657-680.


Cheng, Winnie (2012) Exploring Corpus Linguistics. London: Routledge.


Clare, Linda (2003) Managing threats to self: Awareness in early stage Alzheimer’s disease. Social Science and Medicine 57 (6): 1017-1029.


Dunning, Ted (1993) Accurate methods for the statistics of surprise and coincidence. Computational Linguistics 19 (1): 61-74.


Eysenbach, Gunther, John Powell, Marina Englesakis, Carlos Rizo and Anita Stern (2004) Health related virtual communities and electronic support groups: Systematic review of the effects of online peer to peer interactions. British Medical Journal 328 (7449): 1166-1171.


Fleischman, Suzanne (1999) I am . . ., I have . . ., I suffer from . . .: A linguist reflects on the language of illness and disease. Journal of Medical Humanities 20 (1): 3-32.


Fontana, Andrea and Ronald W. Smith (1989) Alzheimer’s disease victims: The ‘unbecoming’ of self and the normalization of competence. Sociological Perspectives 32 (1): 35-46.


Frank, Arthur W. (1993) The rhetoric of self-change: Illness experience as narrative. Sociological Quarterly 34 (1): 39-52.


Galegher, Jolene, Lee Sproull and Sara Kiesler (1998) Legitimacy, authority, and community in electronic support groups. Written Communication 15 (4): 493-530.


Gee, James P. (2014) An Introduction to Discourse Analysis: Theory and Method. London: Routledge.


Gillies, Brenda A. (2000) A memory like clockwork: Accounts of living through dementia. Aging and Mental Health 4 (4): 366-374.


Golden, Mindi A., Bryan B. Whaley and Anne M. Stone (2012) ‘The system is beginning to shut down’: Utilizing caregivers’ metaphors for dementia, persons with dementia, and caregiving. Applied Nursing Research 25 (3): 146-151.


Gubrium, Jaber F. (1986) The social preservation of mind: The Alzheimer’s disease experience. Symbolic Interaction 9 (1): 37-51.


Halliday, Michael A. and Christian M. I. M. Matthiessen (2014) Halliday’s Introduction to Functional Grammar (4th edition). London: Routledge.


Harman, Guy and Linda Clare (2006) Illness representations and lived experience in early-stage dementia. Qualitative Health Research 16 (4): 484-502.


Harvey, Kevin (2012) Disclosures of depression: Using corpus linguistics methods to examine young people’s online health concerns. International Journal of Corpus Linguistics 17 (3): 349-379.


Harvey, Kevin (2013) Investigating Adolescent Health Communication. London: Bloomsbury.


Harvey, Kevin, Brian Brown, Paul Crawford, Aidan Macfarlane and Ann McPhersond (2007) ‘Am I normal?’ Teenagers, sexual health and the internet. Social Science and Medicine 65 (4): 771-781.


Horne, Judith and Sally Wiggins (2009) Doing being ‘on the edge’: Managing the dilemma of being authentically suicidal in an online forum. Sociology of Health and Illness 31 (2): 170-184.


Høybye, Mette T., Christoffer Johansen and Time Tjørnhøj-Thomsen (2005) Online interaction: Effects of storytelling in an Internet breast cancer support group. Psycho-Oncology 14 (3): 211-220.


Hunt, Daniel and Kevin Harvey (2015) Health communication and corpus linguistics: Using corpus tools to analyse eating disorder discourse online. In Paul Baker and Tony McEnery (eds) Corpora and Discourse Studies, 134-154. Basingstoke, UK: Palgrave Macmillan.


Hydén, Lars‐Christer (1997) Illness and narrative. Sociology of Health & Illness 19 (1): 48-69.


Karnilowicz, Wally (2011) Identity and psychological ownership in chronic illness and disease state. European Journal of Cancer Care 20 (2): 276-282.


Kitwood, Tom (1997) Dementia Reconsidered: The Person Comes First. Buckingham, UK: Open University Press.


Kleinman, Arthur (1988) The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books.


MacRae, Hazel (2010) Managing identity while living with Alzheimer’s disease. Qualitative Health Research 20 (3): 293-305.


Mahlberg, Michaela and Dan McIntyre (2011) A case for corpus stylistics: Ian Fleming’s Casino Royale. English Text Construction 4 (2): 204-227.


McDonald, Daniel and Robyn Woodward-Kron (2016) Member roles and identities in online support groups: Perspectives from corpus and systemic functional linguistics. Discourse and Communication 10 (2): 157-175.


Mullany, Louise, Catherine Smith, Kevin Harvey and Svenja Adolphs (2015) ‘Am I anorexic?’ Weight, eating and discourses of the body in online adolescent health communication. Communication & Medicine 12 (2-3): 211-223.


O’Brien, Mary R. and David Clark (2012) Unsolicited written narratives as a methodological genre in terminal illness. Qualitative Health Research 22 (2): 274-284.


Orpin, Debbie (2005) Corpus linguistics and critical discourse analysis: Examining the ideology of sleaze. International Journal of Corpus Linguistics 10 (1): 37-61.


Parsloe, Sarah M. (2015) Discourses of disability, narratives of community: Reclaiming an autistic identity online. Journal of Applied Communication Research 43 (3): 336-356.


Partington, Alan, Alison Duguid and Charlotte Taylor (eds) (2013) Patterns and Meanings in Discourse: Theory and Practice in Corpus-Assisted Discourse Studies (CADS). Amsterdam: John Benjamins.


Pearce, Alison, Linda Clare and Nancy Pistrang (2002) Managing sense of self: Coping in the early stages of Alzheimer’s disease. Dementia 1 (2): 173-192.


Phinney, Alison (2002) Living with the symptoms of Alzheimer’s disease. In P. B. Harris (ed.) The Person with Alzheimer’s Disease: Pathway to Understanding the Experience, 49-74. Baltimore, MD: John Hopkins University Press.


Prince, Martin, Martin Knapp, Maelenn Guerchet, Paul McCrone, Matthew Prina, Adelina Comas-Herrera et al. (2014) Dementia UK: Update. London: Alzheimer’s Society.


Radin, Patricia (2006) ‘To me, it’s my life’: Medical communication, trust, and activism in cyberspace. Social Science and Medicine 62 (3): 591-601.


Rasmussen, Bodil, Patricia Dunning and Beverly O’Connell (2007) Young women with diabetes: Using Internet communication to create stability during life transitions. Journal of Clinical Nursing 16 (3): 17-24.


Riessman, Catherine K. (2003) Performing identities in illness narrative: Masculinity and multiple sclerosis. Qualitative Research 3 (1): 5-33.


Rodham, Karen and Jeff Gavin (2006) The ethics of using the internet to collect qualitative research data. Research Ethics Review 2 (3): 92-97.


Rodriquez, Jason (2013) Narrating dementia: Self and community in an online forum. Qualitative Health Research 23 (9): 1215-1227.


Sabat, Steve R. and Rom Harré (1992) The construction and deconstruction of self in Alzheimer’s disease. Ageing and Society 12 (4): 443-461.


Scott, Mike (2000) Focusing on the text and its key words. In L. Burnard and T. McEnery (eds) Rethinking Language Pedagogy from a Corpus Perspective, 103-122. Frankfurt: Peter Lang.


Scott, Mike (2008) WordSmith Tools version 5. Liverpool: Lexical Analysis Software.


Seale, Clive, Jonathan Charteris-Black, Aidan MacFarlane and Ann McPherson (2010) Interviews and Internet forums: A comparison of two sources of qualitative data. Qualitative Health Research 20 (5): 595-606.


Seale, Clive, Sue Ziebland and Jonathan Charteris-Black (2006) Gender, cancer experience and internet use: A comparative keyword analysis of interviews and online cancer support groups. Social Science and Medicine 62 (10): 2577-2590.


Semino, Elena (2008) Metaphor in Discourse. Cambridge: Cambridge University Press.


Semino, Elena, Zsófia Demjén, Jane Demmen, Veronika Koller, Sheila Payne, Andrew Hardie and Paul Rayson (2017) The online use of violence and journey metaphors by patients with cancer, as compared with health professionals: A mixed methods study. BMJ Supportive & Palliative Care 7 (1): 60-66.


Sixsmith, Judith and Craig D. Murray (2001) Ethical issues in the documentary data analysis of Internet posts and archives. Qualitative Health Research 11 (3): 423-432.


Smedley, Richard M., Neil S. Coulson, Jeff Gavin, Karen Rodham and Leon Watts (2015) Online social support for Complex Regional Pain Syndrome: A content analysis of support exchanges within a newly launched discussion forum. Computers in Human Behavior 51 (A): 53-63.


Stubbs, Michael (2010) Three concepts of keywords. In Marina Bondi and Mike Scott (eds) Keyness in Texts, 19-42. Amsterdam: John Benjamins.


Tanis, Martin (2008) Health-related on-line forums: What’s the big attraction? Journal of Health Communication 13 (7): 698-714.


Van Uden-Kraan, Cornelia F., Constance H. C. Drossaert, Erik Taal, Bret R. Shaw, Erwin R. Seydel and Mart A. F. J. van de Laar (2008) Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia. Qualitative Health Research 18 (3): 405-417.


World Health Organization (2016) Dementia. Available online:


Xiao, Richard (2015) Collocation. In Douglas Biber (ed.) The Cambridge Handbook of English Corpus Linguistics, 106-124. Cambridge: Cambridge University Press.