Visual Arts

The Partnerships in Dementia Care Alliance, aims to challenge the tragedy discourse that surrounds dementia and build upon the culture change process. To do so, they have partnered with researchers, persons living with dementia, their care partners, artists, and actors to create various arts based projects that share individual experiences of dementia.

In this arts and community-based research project we brought persons with dementia, family members, visual and performance artists, and researchers together in a one-day workshop to explore the implications of the tragedy discourse for persons and families experiencing dementia and worked with them to begin to create an alternative discourse. Working collaboratively, eight visual and poetic expressions were created that reflect what persons with dementia want the world to know about them: despite loss and sadness they are supported by loving networks, embracing life, remaining active and engaged, breaking the silence, and transforming with new possibilities. The visual and poetic expressions were chosen to be featured at an installation at LabCab, a multi-arts festival in Toronto, Canada, in July 2013. It was also featured at the Toronto Rehabilitation Institute-University Health Network, Innovations Gallery in 2013 and was so successful that it was invited back for a second showing. A story on the art appeared in the Kitchener Record Fall 2013.

The following is a publication about this research project: Dupuis, S.L., Kontos, P., Mitchell, G., Jonas-Simpson, C., & Gray, J. (2016). Re-claiming citizenship through the arts. Special Issue on Citizenship, Dementia: The International Journal of Social Research and Practice. http://journals.sagepub.com/doi/abs/10.1177/1471301216637206

Elder-Clowning

• Kontos, P., Grigorovich, A., Colobong, R. Towards a critical understanding of creativity and dementia: New directions for practice change. International Practice Development Journal (Special Issue: Critical perspectives on person, care and aging) 2020; 10(3). https://www.fons.org/library/journal/volume10-suppl/article3.
• Kontos, P., Miller, K.L., Mitchell, G., Stirling-Twist, J. Presence redefined: The reciprocal nature of engagement between elder-clowns and persons with dementia. Dementia: The International Journal of Social Research and Practice. 2017; 16(1):46-66. http://journals.sagepub.com/doi/abs/10.1177/1471301215580895
• Kontos, P., Miller, K.L., Colobong, R., Palma Lazgare, L., Binns, M., Low, L-F., Surr, C., Naglie, G. Elder-clowning in long-term dementia care: Results of a pilot study. Journal of the American Geriatrics Society. 2016; 64(2):347-353. http://onlinelibrary.wiley.com/doi/10.1111/jgs.13941/full
• Miller, K.L., Kontos, P. (2016). The use of elder-clowning to foster relational citizenship in dementia care. In J.F. Gubrium, T. Alm Andreassen, and P.K. Solvang (Eds.), Reimagining the Human Service Relationship, pp. 158-177. Columbia University Press: New York. https://cup.columbia.edu/book/reimagining-the-human-service-relationship/9780231171526

Dance

• Kontos, P., Grigorovich, A., Kosurko, A., Bar, R.J., Herron, R.V., Menec, V., Skinner, M. Dancing with dementia: Exploring the embodied dimensions of creativity and social engagement. The Gerontologist 2020. https://doi.org/10.1093/geront/gnaa129
• Kontos, P., Grigorovich, A. Integrating citizenship, embodiment, and relationality: Towards a reconceptualization of dance and dementia in long-term care.  Journal of Law, Medicine & Ethics (Special Issue: Perspectives on Alzheimer’s Disease: Ethical, Legal, and Social Issues) 2018; 46(3): 717-723. https://journals.sagepub.com/doi/full/10.1177/1073110518804233

Music

• Kontos, P., Grigorovich, A. Rethinking musicality in dementia as embodied and relational. Journal of Aging Studies (Special Issue: Ageing Body and Society – Critical Perspectives, Future Challenges) 2018; 45:39-48. https://doi.org/10.1177/1073110518804233

Summary of Relational Caring

https://crackedondementia.ca/wp-content/uploads/2017/07/Relational-Caring-FINAL.pdf

Publications

• Jonas-Simpson, C., Mitchel, G.J., Dupuis, S., Donovan, L., Kontos, P. Free to be: Experiences of arts-based relational caring in a community living and thriving with dementia. Dementia: The International Journal of Social Research and Practice https://doi.org/10.1177/14713012211027016.
• Mitchell, G., Dupuis, S.L., Kontos, P., Jonas-Simpson, C., Gray, J. Disrupting dehumanizing and intersecting patterns of modernity with a relational ethic of caring. International Practice Development Journal 2020; 10(1), Art. 2. https://www.fons.org/Resources/Documents/Journal/Vol10No1/IPDJ_10_01_02.pdf

Model of Relational Citizenship

• Kontos, P., Miller, K-L., Kontos, A.P. Relational citizenship: Supporting embodied selfhood and relationality in dementia care. Sociology of Health and Illness (Special Issue: Ageing, Dementia and the Social Mind). 2017; DOI: 1111/1467-9566.12453. http://onlinelibrary.wiley.com/doi/10.1111/1467-9566.12453/full
• Kontos, P., Grigorovich, A., Kontos, A.P., Miller, K.L. Citizenship, human rights, and dementia: Towards a new embodied relational ethic of sexuality. Dementia: The International Journal of Social Research and Practice (Special Issue on Citizenship). 2016; 15(3); 315-329. http://journals.sagepub.com/doi/full/10.1177/1471301216636258
• Grigorovich, A., Kontos, P. Advancing an ethic of embodied relational sexuality to guide decision-making in dementia care. The Gerontologist. 2016; DOI: 10.1093/geront/gnw137. https://academic.oup.com/gerontologist/advance-article/doi/10.1093/geront/gnw137/2646625

Embodied Selfhood

• Kontos, P., Martin, W. Embodiment and dementia: Exploring critical narratives of selfhood, surveillance, and dementia care. Dementia: The International Journal of Social Research and Practice (Special Issue: Embodiment and Dementia) 2013; 12(3):288-302. http://journals.sagepub.com/doi/abs/10.1177/1471301213479787
• Kontos, P. Alzheimer expressions or expressions despite Alzheimer’s?: Philosophical reflections on selfhood and embodiment. Occasion: Interdisciplinary Studies in the Humanities 2012; 4(May 31). Retrieved from http://arcade.stanford.edu/sites/default/files/article_pdfs/OCCASION_v04_Kontos_053112_0.pdf.
• Kontos, P. Rethinking sociability in long-term care: An embodied dimension of selfhood. Dementia: The International Journal of Social Research and Practice 2011; 11(3):324-346. http://journals.sagepub.com/doi/abs/10.1177/1471301211421073

From Person-Centred to Authentic Partnerships

• Authentic partnership video
• Dupuis, S.L., Gillies, J., Carson, J., Whyte, C., Genoe, R., Loiselle, L., & Sadler, L. (2012). Moving beyond ‘patient’ and ‘client’ approaches: Mobilising authentic partnerships in dementia care. Dementia: The International Journal of Social Research and Practice, 11(4), 428-450. http://journals.sagepub.com/doi/abs/10.1177/1471301211421063
• Dupuis, S.L., & Gillies, J. (2014). Learning as a vehicle for individual and social transformation: Re-thinking leisure education. Therapeutic Recreation Journal, 48(2), 113-134. http://js.sagamorepub.com/trj/article/view/5191
• Dupuis, S.L., Whyte, C., Carson, J., Genoe, R., Meschino, L. & Sadler, L. (2012). Just dance with me: An authentic partnership approach in understanding leisure in the dementia context. Special issue on Leisure, Health and Disability of World Leisure Journal, 54(3), 240-254. http://www.tandfonline.com/doi/abs/10.1080/04419057.2012.702454

The Partnerships in Dementia Care Alliance

• https://uwaterloo.ca/partnerships-in-dementia-care/
• Dupuis, S.L., McAiney, C., Fortune, D., Ploeg, J., & deWitt, L. (2016). Theoretical foundations guiding culture change: The work of the Partners in Dementia Care Alliance. Dementia: The International Journal of Social Research and Practice, 15(1), 85-105. EPub 2014. doi:10.1177/1471301213518935 http://journals.sagepub.com/doi/abs/10.1177/1471301213518935

Other Publications on Culture Change

• Mitchell, G., Dupuis, S.L., Kontos, P., Jonas-Simpson, C., Gray, J.  Disrupting dehumanizing and intersecting patterns of modernity with a relational ethic of caring. International Practice Development Journal 2020; 10(1), Art. 2. https://www.fons.org/Resources/Documents/Journal/Vol10No1/IPDJ_10_01_02.pdf
• Dupuis, S.L., Kontos, P., Mitchell, G., Jonas-Simpson, C., & Gray, J. (2016). Re-claiming citizenship through the arts. Special Issue on Citizenship, Dementia: The International Journal of Social Research and Practice. DOI: 10.1177/1471301216637206. http://journals.sagepub.com/doi/abs/10.1177/1471301216637206
• Mitchell, G., Dupuis, S.L., & Kontos, P. (2013). Dementia discourse: From imposed suffering to knowing other-wise. Journal of Applied Hermeneutics. Available at http://jah.journalhosting.ucalgary.ca/jah/index.php/jah/article/view/4
• Dupuis, S.L., Gillies, J., Carson, J., Whyte, C., Genoe, R., Loiselle, L., & Sadler, L. (2012). Moving beyond ‘patient’ and ‘client’ approaches: Mobilising authentic partnerships in dementia care. Dementia: The International Journal of Social Research and Practice, 11(4), 428-450.  http://journals.sagepub.com/doi/abs/10.1177/1471301211421063
• Wiersma, E., & Dupuis, S. (2010). Becoming institutional bodies: Socialisation into a long-term care home. Journal of Aging Studies, 25(1), 278-291. https://www.sciencedirect.com/science/article/pii/S0890406510000666
• Dupuis, S.L., Wiersma, E., & Loiselle, L. (2012). Pathologizing behaviour: Meanings of behaviours in dementia care. Journal of Aging Studies, 26(2), 162-173. https://www.sciencedirect.com/science/article/pii/S0890406511000892

Publications

• Kontos, P., Grigorovich, A., Dupuis, S., Jonas-Simpson, C., Mitchell, G., Gray, J. Raising the curtain on stigma associated with dementia: Fostering a new cultural imaginary for a more inclusive society. Critical Public Health 2020; 30(1): 91-102. https://doi.org/10.1080/09581596.2018.1508822
• Gray, J., Kontos, P.  An aesthetic of relationality: Embodiment, imagination, and the necessity of playing the fool in research-informed theatre. Qualitative Inquiry 2018, 24(7): 440-542. https://doi.org/10.1177/1077800417736331
• Gray, J., Kontos, P. (2015). Immersion, embodiment, and imagination: Moving beyond an aesthetic of objectivity in research-informed performance in health [31 paragraphs]. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 16(2), Art. 29. http://www.qualitative-research.net/index.php/fqs/article/view/2288/3827
• Kontos, P., Miller, K.L., Gilbert, J.E., Mitchell, G.J., Colantonio, A., Keightley, M.L., Cott, C. (2012). Improving client-centered brain injury rehabilitation through research-based theater. Qualitative Health Research, 22(12):1612-1632. http://journals.sagepub.com/doi/abs/10.1177/1049732312458370
• Kontos, P., Mitchell, G.J., Mistry, B., Ballon, B. (2010). Using drama to improve person-centred dementia care. International Journal of Older People Nursing (Special Issue: Outcomes from the Promotion of Personhood in Gerontological Nursing), 5:159-168. http://onlinelibrary.wiley.com/doi/10.1111/j.1748-3743.2010.00221.x/abstract
• Rossiter, K., Kontos, P., Colantonio, A., Gilbert, J., Gray, J., Keightley, M. (2008). Staging data: Theatre as a tool for analysis and knowledge transfer in health research. Social Science and Medicine, 66(1):130-146. https://www.sciencedirect.com/science/article/pii/S0277953607004157
• Kontos, P., Naglie, G. (2007). “Expressions of personhood in Alzheimer’s disease”: An evaluation of research-based theatre as a pedagogical tool. Qualitative Health Research, 17(6):799-811. http://journals.sagepub.com/doi/abs/10.1177/1049732307302838
• Kontos, P., Naglie, G. (2006). “Expressions of personhood in Alzheimer’s”: Moving from ethnographic text to performing ethnography. Qualitative Research, 6(3):301-317. http://journals.sagepub.com/doi/abs/10.1177/1468794106065005
• Dupuis, S.L., Mitchell, G., Jonas-Simpson, C., Whyte, C., Gillies, J., Carson, J. (2015). Igniting transformative change in dementia care through research-based drama. The Geronotologist, 56(6), 1042-1052. Doi: 10.1093/geront/gnv062 https://academic.oup.com/gerontologist/article/56/6/1042/2952872
• Jonas-Simpson, C., Mitchell, G., Carson, J., Whyte, C., Dupuis, S.L., & Gillies, J. (2012). Phenomenological shifts for healthcare professionals after I’m Still Here. Journal of Advanced Nursing, 68(9), 1944-1955. http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2648.2011.05877.x/abstract
• Mitchell, G.J., Dupuis, S.L., & Jonas-Simpson, C. (2011). Countering stigma with understanding: The role of theatre in social change and transformation. Canadian Theatre Review, 146, 22-27. https://muse.jhu.edu/article/430910/summary
• Mitchell, G., Jonas-Simpson, C., Dupuis, S., Whyte, C., Carson, J., & Gillies, J. (2011) The experience of engaging with research-based drama. Evaluation and explication of synergy and transformation. Qualitative Inquiry, 17(5), 379-392. http://journals.sagepub.com/doi/abs/10.1177/1077800411401200
• Dupuis, S.L., Gillies, J., Mitchell, G., Jonas-Simpson, C., Whyte, C., & Carson, J. (2011). Catapulting shifts in images, understandings and actions through research-based drama. Family Relations, 60, 104-120. http://onlinelibrary.wiley.com/doi/10.1111/j.1741-3729.2010.00636.x/abstract