Performing Interpretation

An Ethnodrama-Based Method for Arts-Based Dementia Research

Authors

DOI:

https://doi.org/10.7577/ar.6517

Keywords:

ethnodrama, narrative inquiry, arts-based research, dementia, diaspora, culture, interpretation

Abstract

This study explores how art-based research (ABR) can be used to raise awareness of front temporal dementia (FTD) in the United Kingdom. Although drama is often used as a tool for dissemination in health-related research, its potential as a method of interpretation remains underdeveloped. In this study, the art-based method was used to create a narrative, a play called “My Name is Beatrice,” based on autoethnographic conversations and observations and desk-based research. First, the data from observations and conversations, together with findings from desk-based research, were analysed using narrative analysis to develop an understanding of the essential components ethnodrama should encompass. This analysis resulted in the creation of a play. Second, a narrative analysis was conducted, focusing on the structure of the play. This analysis examines the play’s construction and central findings through key dramatic elements. In this article, ethnodrama is positioned as an analytic tool that highlights cultural silence, stigma, and misdiagnosis while offering new ways of engaging communities and professionals in dialogue about FTD. The intersection of culture, dementia, and the arts highlighted in this study highlights the need for interdisciplinary approaches to dementia research.

Photo: John Alao

Downloads

Download data is not yet available.

Author Biographies

Abimbola Alao, University of Lapland

Dr. Abimbola Alao is a post doc researcher at the Faculty of Education at the University of Lapland

Erika Katjaana Sarivaara, UiT The Arctic University of Norway

Erika Sarivaara is an Associate Professor in Sami language in the Faculty of Humanities, Social Sciences and Education at the Uit The Arctic University of Norway

Satu Uusiautti, University of Lapland

Satu Uusiautti is a Professor (education, especially educational psychology) at the Faculty of Education at the University of Lapland.

Syed Javaid

Syed Javaid is an Associate Professor at the Department of Psychiatry at the United Arab Emirates University.

References

Adams, T. E., Holman Jones, S., & Ellis, C. (2015). Autoethnography: Understanding qualitative research. Oxford University Press.

Adebisi A.T., & Salawu M. A. (2023). Misconception of dementia-related disorders in sub-Saharan Africa. Front Neurol. 14. https://doi.org/10.3389/fneur.2023.1148076

Aiello, M., Silani, V., & Rumiati, R. I. (2016). You stole my food! Eating alterations in frontotemporal dementia. Neurocase, 22(4):400– 409. https://doi.org/10.1080/13554794.2016.1197952

Akinyemi, R. O., Baiyewu, O., & Ogunniyi, A. (2022). Dementia in Africa: Current evidence, knowledge gaps, and future directions. Alzheimer's & Dement; 18: (4) 790– 809. https://doi.org/10.1002/alz.12432

Alao, A. (2023). Raising Awareness of Frontotemporal Dementia among Nigerian Immigrant Communities in the UK, through Storytelling. An Autoethnography Thesis, Using an Art-based Research Approach. Acta electronica Universitatis Lapponiensis 355. University of Lapland: Rovaniemi.

Allen, J., Oyebode, J., & Allen, J. (2009). Having a father with young onset dementia. The impact on well-being of young people. Dementia. 8(4). 455–480. https://doi.org/10.1177/1471301209349106

Aristotle. (1977). Rhetoric and the poetics (I. Bywater, Trans.). Random House.

Aza A, Gómez-Vela M, Badia M, Begoña Orgaz M, González-Ortega E, Vicario-Molina I, Montes-López E. (2022). Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches. Health Qual Life Outcomes. 2022 May 7;20(1):76.

Beard, R. L. (2011). Art therapies and dementia care: A systematic review. Dementia. 11(5), 633–656. https://doi.org/10.1177/1471301211421090

Bishop, M. (2020). “Don’t tell me what to do”: encountering colonialism in the academy and pushing back with Indigenous autoethnography. International Journal of Qualitative Studies in Education, 33(8), 1–12.

Brand, G., Peters, S., & Dart, J. (2024). Verbatim theatre as a creative approach to health professions education research translation. Medical education, 58(11), 1296–1303. https://doi.org/10.1111/medu.15449

Bruner, J. (1991). The narrative construction of reality. Critical Inquiry, 18(1), 1–21. https://doi.org/10.1086/448619

Burrell, J. R., & Hodges, J. R. (2018). Falls in frontotemporal dementia and related syndromes. Handbook of Clinical Neurology, 159, 195–203. https://doi.org/10.1016/B978-0-444-63916-5.00012-4

Candy, L., & Edmonds, E. (2018). Practice-based research in the creative arts: foundations and futures from the front line. Leonardo, 51(1), 63–69. https://doi.org/10.1162/LEON_a_01471

Capstick, A. (2023). In Their Own Words: Exploring the Methodology and Ethics of Ethnotheatre in Qualitative Dementia Research. International Journal of Qualitative Methods, 22, 1–12. https://doi.org/10.1177/16094069231184824

Carter, C., Charlesworth, G., Bamford, C., Dening, T., Dening, K. H., Downs, M., Oyebode, J., & Ojo, G. (2024). Equality of opportunity for timely dementia diagnosis (EQUATED): a qualitative study of how people from minoritised ethnic groups experience the early symptoms of dementia and seek help, Age and Ageing, Volume 53(11), November 2024, afae244, https://doi.org/10.1093/ageing/afae244

Charon, R. (2006). Narrative medicine: Honoring the stories of illness. Oxford University Press.

Denzin, N. K. (2003). Reading and Writing Performance. Qualitative Research, 3(2), 243–268. https://doi.org/10.1177/14687941030032006

Edwards, J. (2021). Ethical Autoethnography: Is it Possible? International Journal of Qualitative Methods, 20, 1–10. https://doi.org/10.1177/1609406921995306

Eisner, E. W. (2008). Art and knowledge. In J. G. Knowles & A. L. Cole (Eds.), Handbook of the arts in qualitative research: perspectives, methodologies, examples and issues, 3–12. Sage. https://doi.org/10.4135/9781452226545.n1

Ellis, C., & Bochner, A. (1992). Telling and performing personal stories: The constraints of choice in abortion. In C. Ellis & M. G. Flaherty (Eds.), Investigating subjectivity: Research on lived experience, 79–101. Sage.

Erkkinen, M., Zúñiga, R., Pardo, C., Miller, B. & Miller, Z. (2018). Artistic Renaissance in Frontotemporal Dementia. JAMA, ;319(13), 1304–1306. https://doi.org/10.1001/jama.2017.19501

Ergun, A. & Erdemir, A. (2010). Negotiating insider and outsider identities in the field: “insider” in a foreign land; “outsider” in one’s own land. Field Methods, 22(1), 16–38. https://doi.org/10.1177/1525822X09349919

Field, S. (2005). Screenplay: The foundations of screenwriting revised edition. Delta.

Finlay, L. (2000). ‘Outing’ the researcher: the provenance, process, and practice of reflexivity. Qualitative Health Research, 12, 531–545. https://doi.org/10.1177/104973202129120052

Gray, C., & Malins, J. (1993). Research procedures. Methodology for artists & designers.

Green, M. C., & Brock, T. C. (2000). The role of transportation in the persuasiveness of public narratives. Journal of Personality and Social Psychology, 79(5), 701–721. https://doi.org/10.1037/0022-3514.79.5.701

Hammersley M. & Atkinson P. (2007) Ethnography: Principles in Practice. Third edition. Routledge, London.

Hamzeh, M., & Oliver, K. (2010). Gaining research access into the lives of Muslim girls: Researchers negotiating Muslimness, modesty, inshallah, and haram. International Journal of Qualitative Studies in Education, 23(2), 165–180.

Harris, A., Hunter, M. A., & Hall, C. (2015). Critically evolving: Critical approaches to arts-based research. UNESCO Observatory Multidisciplinary Journal in the Arts, 5(1), 1–7.

Healthcare for London. (2009). Dementia services guide: Appendix 9-Equality impact assessment (EqIA).

Heikkinen, H. L. T., Huttunen, R., Syrjälä, L., & Pesonen, J. (2012). Action research and narrative inquiry: Five principles for validation revisited. Educational Action Research, 20(1), 5–21. https://doi.org/10.1080/09650792.2012.647635

Horsburgh, D. (2003) Evaluation of qualitative research. Journal of Clinical Nursing, 12(2), 307–312. https://doi.org/10.1046/j.1365-2702.2003.00683.x

Ivanchenko, A. (2007). An ‘interactive’ approach to interpreting overlapping dialogue in Caryl Churchill’s Top Girls (Act 1). Language and Literature, 16(1), 74–89. https://doi.org/10.1177/0963947007072846

Jokela, T., & Huhmarniemi, M. (2018). Art-based action research in the development work of arts and art education. In Conjunctions of arts, pedagogy and cultural research, 9–25. University of Lapland.

Jones, S., Adams, T. & Ellis, C. (2016). Handbook of autoethnography. Routledge. https://doi.org/10.4324/9781315427812

Joseph, S., Kendall, C., Toher, D., Sempik, J., Holland, J., & Becker, S. (2019). Young carers in England: Findings from the 2018 BBC survey on the prevalence and nature of caring among young people. Child: Care, Health and Development, 45(4), 606–612. https://doi.org/10.1111/cch.12674

Gowda R. J. & Gurupasad, P. (2024). The Impact of Cultural Beliefs and Stigma on Dementia Care and Diagnosis: A Scoping Review. (Version 1) [Preprint]. Research Square. https://doi.org/10.21203/rs.3.rs-5519592/v1

Kapur, N. (1996). Paradoxical functional facilitation in brain-behaviour research. A critical review. Brain, 119(Pt 5), 1775–1790. https://doi.org/10.1093/brain/119.5.1775

Khan, I., & De Jesus, O. (2021). Frontotemporal lobe dementia. In StatPearls. StatPearls Publishing.

Kosygina, L. (2005) Doing gender in research: reflection on experience in field. Qualitative Report, 10(1), 87–95.

Kraut, A. (1990). Healers and strangers: Immigrant attitudes toward the physician in America—A relationship in historical perspective. JAMA, 263(13), 1807–1811. https://doi.org/10.1001/jama.1990.03440130095032

Leavy, P. (Ed.). (2025). Handbook of arts-based research (Second edition). The Guilford Press.

Lewis, C., Miller, E., & Pike, S. (2024). Writing research-based theatre on aged care: the ethnodrama, After Aleppo. Culture and Organization, 30(3), 305–322. https://doi.org/10.1080/14759551.2023.2216829

Lewis, P. J. (2011). Storytelling as research/research as storytelling. Sage.

Martin, E. (2011). Intertextuality: An Introduction. The Comparatist, 35, 148–151. https://doi.org/10.1353/com.2011.0001

McCarter, S., St Louis, E. & Boeve, B. (2016). Sleep disturbances in frontotemporal dementia. Current Neurology and Neuroscience Reports, 16(9), Article 85. https://doi.org/10.1007/s11910-016-0680-3

Memon, A., Taylor, K., Mohebati, L., Sundin, J., Cooper, M., Scanon, T. & de Visser, R. (2016). Perceived barriers to accessing mental health services among black and minority ethnic (BME) communities: a qualitative study in Southeast England. BMJ Open, 6(11), art. e012337. https://doi.org/10.1136/bmjopen-2016-012337

Mienczakowski, J., Smith, L. & Morgan, S. (2002). Seeing words—Hearing feelings: Ethnodrama and the performance of data. In C. Bagley & B. Cancienne (Eds.), Dancing the data, 34–52. Peter Lang.

Mienczakowski, J. (2001). Ethnodrama: Performed research – limitations and potential. In P. Atkinson, A. Coffey, S. Delamont, J. Lofland, & L. Lofland (Eds.), Handbook of ethnography, 468–476. Sage. https://doi.org/10.4135/9781848608337.n32

Miller, B., & Llibre Guerra, J. J. (2019). Frontotemporal dementia. Handbook of clinical neurology, 165, 33–45. https://doi.org/10.1016/B978-0-444-64012-3.00003-4

Mokwenye R. (2024). Lay Knowledge and Beliefs Toward Dementia Among the Black African Populations in the UK and Africa: Evidence Synthesis of Qualitative Studies. Journal of Primary Care & Community Health, 15, 21501319241291786. https://doi.org/10.1177/21501319241291786

Mokwenye, R. (2025). A thematic analysis of Lay knowledge and beliefs about dementia among first-generation Black African immigrants from West Africa living in London: Informed by a grounded theory approach. Journal of Public Health Research. 14. https://doi.org/10.1177/22799036251368446

Mukadam, N., Cooper, C., & Livingston, G. (2011). A systematic review of ethnicity and pathways to care in dementia. International Journal of Geriatric Psychiatry, 26(1), 12–20. https://doi.org/10.1002/gps.2484

Naples, N. A. (1996). A feminist revisiting of the insider/outsider debate: The “outsider phenomenon” in rural Iowa. Qualitative Sociology, 19(1), 83–106. https://doi.org/10.1007/BF02393249

Novy, C., Thomas, R., Garcia, L., Gifford, W., & Grassau, P. (2021). Using the performance arts to address a “methods gap” in dementia research. Arts & Health, 14(3), 295–308. https://doi.org/10.1080/17533015.2021.1942093

Nuytemans, K., Franzen, S., Broce, I. J., et al. (2024) Gaps in biomedical research in frontotemporal dementia: A call for diversity and disparities focused research. Alzheimer’s & Dementia, 20(12), 9014–9036. https://doi.org/10.1002/alz.14312

Ochieng B. M. (2011). The effect of kin, social network and neighbourhood support on individual well-being. Health & social care in the community, 19(4), 429–437. https://doi.org/10.1111/j.1365-2524.2011.00992.x

Onyike, C., & Diehl-Schmid, J. (2013). The epidemiology of frontotemporal dementia. International Review of Psychiatry, 25(2), 130–137. https://doi.org/10.3109/09540261.2013.776523

Padgett, D. (2008). Qualitative methods in social work research (2nd ed.). Sage.

Park, J., & Sun Jun, B. (2016). Frontotemporal dementia. Korean J Biol Psychiatry 2016;23(3), 69–79.

Petrovsky, D. V., Mobarki, A. M., Sefcik, J. S., Rahemi, Z., Bacsu, J. D. R., Smith, M. L., & Wu, B. (2025). Longitudinal association between creative arts participation with cognitive function in late life. International Psychogeriatrics. Article 100048. https://doi.org/10.1016/j.inpsyc.2025.100048

Pitard, J. (2017). A journey to the centre of self: positioning the researcher in autoethnography. Forum: Qualitative Social Research, 18(3), Article. 10. https://doi.org/10.17169/fqs-18.3.2764

Polkinghorne, D. E. (1995). Narrative configuration in qualitative analysis. In J. A. Hatch & R. Wisniewski (Eds.), Life history and narrative, 5–23. Falmer Press. https://doi.org/10.1080/0951839950080103

Riessman, C. K. (2008) Narrative methods for the human sciences. Sage.

Sackett, K., Carter, M., & Stanton, M. (2014). Elders' use of folk medicine and complementary and alternative therapies: an integrative review with implications for case managers. Professional Case Management, 19(3), 113–125. https://doi.org/10.1097/NCM.0000000000000025

Rutakumwa, R., Mugisha, J. O., Bernays, S., Kabunga, E., Tumwekwase, G., Mbonye, M., & Seeley, J. (2020). Conducting in-depth interviews with and without voice recorders: A comparative analysis. Qualitative Research, 20(5), 565–581. https://doi.org/10.1177/1468794119884806.

Saldaña, J. (Ed.) (2005). Ethnodrama: an Anthology of Reality Theatre, Altamira Press, Walnut Creek, CA. https://doi.org/10.5040/9798216417972

Saldaña, J. (2011). Ethnotheatre: Research from page to stage (1st ed.). Routledge.

Sallis, R. (2007). From data to drama-The construction of an ethnographic performance. NJ: Drama Australia Journal, 31(2), 7–20. https://doi.org/10.1080/14452294.2007.11649514

Salmela, M., & Uusiautti, S. (2017). How to implement the narrative approach in different phases of positive psychological research? A four-dimensional analysis. International Journal of Research Studies in Psychology, 6(1), 43–55. https://doi.org/10.5861/ijrsp.2017.1704

Schensl, S., Schensl, J. & LeCompte, M. (1999). Essential ethnographic methods: Observations, interviews, and questionnaires. Altamira Press.

Smiley, S. (2005). Playwriting: The structure of action (Rev. and expanded ed.). Yale University Press.

Swain, J., & King, B. (2022). Using informal conversations in qualitative research.International Journal of Qualitative Methods, 21, 1–10. https://doi.org/10.1177/16094069221085056

Tompkins, J. (1994). Theatre and the world: Performance and the politics of culture. Theatre Journal, 46(2), 296. https://doi.org/10.2307/3208474

Wood, T. (2011). Author's characters and the character of the author: The typical in fiction. Journal of Literary Semantics, 40(2), 129–145. https://doi.org/10.1515/jlse.2011.009

Zeilig, H., West, J., & van der Byl Williams, M. (2019). Co-creativity, well-being and agency: A case study analysis of a co-creative arts group for people with dementia. Journal of Aging Studies, 49, 100–107.

Zhuo, X., Zhang, L., Chen, Y., & Wang, J. (2025). Effects of an art-based intervention in older adults with dementia: A randomized controlled trial. Scientific Reports, 15, Article 10406. https://doi.org/10.1038/s41598-025-95051-5

Black and white photo of two people studying two black quares/artworks on the wall

Downloads

Published

2026-10-15

How to Cite

Alao, A., Sarivaara, E. K., Uusiautti, S., & Javaid, S. (2026). Performing Interpretation: An Ethnodrama-Based Method for Arts-Based Dementia Research. Nordic Journal of Art & Research, 15(1), 1–26. https://doi.org/10.7577/ar.6517

Issue

Section

Articles, peer reviewed