Constructing expertise in digital dementia support groups
The CODEx model
DOI:
https://doi.org/10.7146/qhc.157727Keywords:
dementia, digital health communication, expertise, interpersonal pragmatics, mediated discourse, online support groups, positioningAbstract
Background: Social media have become an important arena for health-related discourse. As neurocognitive diseases such as dementia become more prominent, digital spaces increasingly serve as sites where knowledge is shared and expertise is constructed and negotiated among individuals living with dementia, care partners, and medical staff. Aim: This paper proposes the Construction of Online Dementia Expertise (CODEx) model to capture the collaborative formation of expertise based on a multifaceted body of knowledge in dementia-related online support groups. Methods: The CODEx model builds on findings from previous empirical studies of two datasets, a message board for individuals living with dementia and a care partners' support group, which were investigated through the lenses of interpersonal pragmatics and mediated discourse analysis. Results: The CODEx model illustrates how dementia-related expertise emerges through iterative, interactive processes that transcend the boundaries between online and offline contexts. In the discursive space of online support groups, users impart explicit propositional knowledge and articulate tacit experiential and procedural knowledge. Discussion: The CODEx model helps to explore the diverse social roles and knowledge facets discursively constructed in dementia-related online support groups which prototypically rests on personal experience as a central source of knowledge. Conclusion: The CODEx model provides a framework for understanding the complex discursive co-construction of expertise in dementia-related online support groups and has potential applications in other areas of mediated health discourse.
References
Angouri, J. (2015). Online communities and communities of practice. In A. Georgakopoulou & T. Spilioti (Eds.), The Routledge Handbook of Language and Digital Communication (pp. 323–338). Routledge. https://doi.org/10.4324/9781315694344
Blume, S. (2017). In search of experiential knowledge. Innovation: The European Journal of Social Science Research, 30(1), 91–103. https://doi.org/10.1080/13511610.2016.1210505
Bös, B, & Schneider, C. (2019). Metapragmatic reflections on verbal interactions with Alzheimer’s Dementia patients—A social media study [Abstract]. In C. Lindholm & A. Gerstenberg (Eds.), Corpora for Language and Aging Research 4, Helsinki, Finland (pp. 27-28). University of Helsinki. https://www.helsinki.fi/assets/drupal/2022-11/clare_book_of_abstracts_0.pdf
Bös, B., & Schneider, C. (2021). “We are all in this together” – Balancing Virtual Proximity and Distance in Online Care Partner Discussions. Anglistik, 32(2), 85–109. https://doi.org/10.33675/angl/2021/2/8
Bös, B., & Schneider, C. (2022a). ‘Typing with dementia.’: Online self-positioning of people living with dementia. Journal of Interactional Research in Communication Disorders, 12(2), 212–233. https://doi.org/10.1558/jircd.20391
Bös, B., & Schneider, C. (2022b). Dementia sufferer and person living with a diagnosis of dementia: Naming practices in academia. Age, Culture, Humanities: An Interdisciplinary Journal, 6. https://doi.org/10.7146/ageculturehumanities.v6i.133272
Bös, B., & Schneider, C. (2025). “You have nothing to fear because we love you” – Expressing emotions in a digital Community of Practice of persons living with dementia. Discourse, Context & Media, 66, 100911. https://doi.org/10.1016/j.dcm.2025.100911
Bourne, L. E., Kole, J. A., & Healy, A. F. (2014). Expertise: Defined, described, explained [Opinion]. Frontiers in Psychology, 5. https://doi.org/10.3389/fpsyg.2014.00186
Bucholtz, M., & Hall, K. (2005). Identity and interaction: a sociocultural linguistic approach. Discourse Studies, 7(4–5), 585–614. https://doi.org/10.1177/1461445605054407
Cianciolo, A. T., & Sternberg, R. J. (2018). Practical intelligence and tacit knowledge: An ecological view of expertise. In K. A. Ericsson, R. R. Hoffman, A. Kozbelt & A. M. Williams (Eds.), The Cambridge handbook of expertise and expert performance (2nd ed., pp. 770–792). Cambridge University Press. https://doi.org/10.1017/9781316480748.039
Craig, D., & Strivens, E. (2016). Facing the times: A young onset dementia support group: FacebookTM style: Facing the times: Young onset dementia. Australasian Journal on Ageing, 35(1), 48–53. https://doi.org/10.1111/ajag.12264
Davis, B. (2010). Interpersonal issues in health discourse. In M. A. Locher & S. L. Graham (Eds.), Interpersonal Pragmatics (Vol. 6, pp. 381–404). De Gruyter Mouton.
Davis, B., Maclagan, M., & Pope, C. (2022). Digital outreach in online dementia discourse. Journal of Interactional Research in Communication Disorders, 12(2), 185–211. https://doi.org/10.1558/jircd.22571
DeCapua, A., & Dunham, J. F. (1993). Strategies in the discourse of advice. Journal of Pragmatics, 20(6), 519–531. https://doi.org/10.1016/0378-2166(93)90014-g
De Choudhury, M., & De, S. (2014). Mental Health Discourse on reddit: Self-Disclosure, Social Support, and Anonymity. Proceedings of the International AAAI Conference on Web and Social Media, 8(1), 71-80. https://doi.org/10.1609/icwsm.v8i1.14526
De Cock, B. & Figueras Bates, C. (2023). Peer experts as actors for shared understanding in Spanish online health fora. In S. Bigi & M. Rossi (Eds.), A Pragmatic Agenda for Healthcare: Fostering inclusion and active participation through shared understanding (pp. 291-312). John Benjamins Publishing Company. https://doi.org/10.1075/pbns.338.12dec
Dimitrov, R., Jelen, A., & L’Etang, J. (2022). Taboos in health communication: Stigma, silence and voice. Public Relations Inquiry, 11(1), 3–35. https://doi.org/10.1177/2046147x211067002
Eckert, P. (2006). Communities of Practice. In K. Brown (Ed.), Encyclopedia of Language & Linguistics (2nd ed., pp. 683–685). Elsevier. https://doi.org/10.1016/B0-08-044854-2/01276-1.
Eraut, M. (2000). Non‐formal learning and tacit knowledge in professional work. British Journal of Educational Psychology, 70(1), 113–136. https://doi.org/10.1348/000709900158001
Franzke, A. S., Bechmann, A., Zimmer, M., Ess, C., & the Association of Internet Researchers (2020). Internet Research: Ethical Guidelines 3.0. https://aoir.org/reports/ethics3.pdf
Hedman, R., Hellström, I., Ternestedt, B.-M., Hansebo, G., & Norberg, A. (2014). Social positioning by people with Alzheimer's disease in a support group. Journal of Aging Studies, 28, 11-21. https://doi.org/10.1016/j.jaging.2013.11.003
Hetmański, M. (2018). Expert knowledge: Its structure, functions and limits. Studia Humana, 7(3), 11–20. https://doi.org/10.2478/sh-2018-0014.
Htait, A., Busso, L., & Grant, T. (2024). Hierarchies of power: Identifying expertise in anonymous online interactions. In N. Naik, P. Jenkins, P. Grace, L. Yang & S. Prajapat (Eds.), Advances in computational intelligence systems (Advances in Intelligent Systems and Computing, Vol. 1453). Springer. https://doi.org/10.1007/978-3-031-47508-5_11
Johnson, J., Black, R. W., & Hayes, G. R. (2020). Roles in the discussion: An analysis of social support in an online forum for people with dementia. Proceedings of the ACM on Human-Computer Interaction, 4(CSCW2), 1–30. https://doi.org/10.1145/3415198
Kleinke, S. (2015). Internetforen: Laiendiskurs Gesundheit [Internet forums: Lay discourse on health]. In A. Busch & T. Spranz-Fogasy (Eds.), Handbuch Sprache in der Medizin [Handbook of Language in Medicine] (pp. 405–422). De Gruyter. https://doi.org/10.1515/9783110296174-023
Kleinke, S. (2022). Constructing dementia in discourse. Journal of Interactional Research in Communication Disorders, 12(2), 234–259. https://doi.org/10.1558/jircd.20401
Kleinke, S., & Bös, B. (2022). Dementia through the lens of family care partners: Carework discourses in German and British public online discussions. In B. Davies & M. Maclagan (Eds.), Dementia Caregiving East and West: Issues of Communication (pp. 70–85). Cambridge Scholars.
Leuckert, S., & Leuckert, M. (2020). Towards a digital sociolinguistics: Communities of Practice on Reddit. In S. Rüdiger & D. Dayter (Eds.), Corpus Approaches to Social Media (pp. 15–40). John Benjamins Publishing Company. https://doi.org/10.1075/scl.98.01leu
Locher, M. A., & Graham, S. L. (2010). Interpersonal pragmatics (1st ed.). De Gruyter Mouton. https://doi.org/10.1515/9783110214338
Locher, M. A., & Thurnherr, F. (2017). Typing yourself healthy: Introduction to the special issue on language and health online. Linguistik Online, 87(8). https://doi.org/10.13092/lo.87.4170
Markham, A., & Buchanan, E. (2017). Research Ethics in Context : Decision-Making in Digital Research. In M. T. Schäfer & K. van Es (Eds.), The Datafied Society: Studying Culture through Data (pp. 201-210). Amsterdam University Press. https://doi.org/10.1515/9789048531011-017
Nonaka, I., & Takeuchi, H. (1995). The Knowledge-Creating Company: How Japanese Companies Create the Dynamics of Innovation. Oxford University Press. https://doi.org/10.1093/oso/9780195092691.001.0001
Panahi, S., Watson, J. A., & Partridge, H. (2012). Social media and tacit knowledge sharing: Developing a conceptual model. World Academy of Science, Engineering and Technology, 6(4), 648–655. https://publications.waset.org/5672.pdf
Petersen, N., König, H.-H., & Hajek, A. (2020). The link between falls, social isolation and loneliness: A systematic review. Archives of Gerontology and Geriatrics, 88, 104020. https://doi.org/10.1016/j.archger.2020.104020
Pleyer, M. (2025). “I still hope it’s just a blip”: Constructing life with dementia in a public digital health community. Discourse, Context & Media, 68, 100953. https://doi.org/10.1016/j.dcm.2025.100953
Rabeharisoa, V., Moreira, T., & Akrich, M. (2013). Evidence-based activism: Patients’ organisations, users’ and activist’s groups in knowledge society. CSI Working Papers Series, 33, 1–25. https://minesparis-psl.hal.science/hal-00822864v1/document
Rudolf Von Rohr, M.-T., Thurnherr, F., & Locher, M. A. (2019). Linguistic Expert Creation in Online Health Practices. In P. Bou-Franch & P. Garcés-Conejos Blitvich (Eds.), Analyzing Digital Discourse New Insights and Future Directions (pp. 219–250). Palgrave Macmillan. https://doi.org/10.1007/978-3-319-92663-6_8
Ryle, G. (2009). The Concept of Mind: 60th Anniversary Edition (1st ed.). Routledge. https://doi.org/10.4324/9780203875858
Schneider, C. (2025). Deictic and non-deictic reference at the online-offline nexus: Discussing death on Reddit. Discourse, Context & Media, 66, 100899. https://doi.org/10.1016/j.dcm.2025.100899
Schneider, C., & Bös, B. (2019). ‘We are not doctors’—Identity work among caregivers in a virtual Community of Practice on Facebook [Poster Presentation]. Inaugural LabFest. https://doi.org/10.13140/RG.2.2.26129.81764
Schneider, C., & Bös, B. (2024, 24 April). “I’m an RN and looked up the medications” – A corpus pragmatic approach to negotiating lay and professional expertise in a digital dementia support group [Paper Presentation]. Expert and Lay Voices in Health Communication, Jagiellonian University, Online.
Sillence, E. (2017). Having faith in the online voice. Exploring contemporary issues of trust, language and advice in the context of e-health. Linguistik Online, 87(8). https://doi.org/10.13092/lo.87.4175
Tagg, C., & T. Spilioti (2022). Research ethics. In C. Vásquez (Ed.), Research Methods for Digital Discourse Analysis (pp. 91-113). Bloomsbury.
Tee, M. Y., & Karney, D. (2010). Sharing and cultivating tacit knowledge in an online learning environment. International Journal of Computer-Supported Collaborative Learning, 5(4), 385–413. https://doi.org/10.1007/s11412-010-9095-3
Vydiswaran, V. G. V., & Reddy, M. (2019). Identifying peer experts in online health forums. BMC Medical Informatics and Decision Making, 19(Suppl 3), 68. https://doi.org/10.1186/s12911-019-0782-3
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