Research

Research

research image

Our collective and independent research informed the development of the script for Cracked. During the development of Cracked, we held additional focus groups with people living with dementia and their family members, we visited and engaged with people living with dementia in long-term care homes, and we explored the consequences of stigma for people living with dementia using the arts. We also drew on past research conducted by the researchers. Some of the research themes related to our vision of changing dementia culture include: the importance of bringing relationships in all their diversity to the forefront of care and living, valorizing memory in all of its forms, nurturing self-expression and reciprocal engagement, and fully supporting the humanity and citizenship of people who are living with dementia and their formal and informal carers.

Research Related to the Themes of Cracked

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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

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

Embodied Selfhood

From Person-Centred to Authentic Partnerships

The Partnerships in Dementia Care Alliance

Other Publications on Culture Change

Publications

Publications on the Development of Cracked

  • Gray, J. Dupuis, S.L., Kontos, P., Jonas-Simpson, C., Mitchell, G. Knowledge as embodied, imaginative, foolish enactment:  Exploring  dementia  experiences  through theatre. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research 2020; 21(3), Art. 2. http://dx.doi.org/10.17169/fqs-21.3.3444.
  • Gray, J., Kontos, P., Dupuis, S., Mitchell, G., Jonas-Simpson, C. (2017). Dementia (re)performed: Interrogating tensions between relational engagement and regulatory policies in care homes through theatre. S. Chivers and U. Kreibernegg (Eds) Care Home Stories: Aging, Disability, and Long-term Residential Care, (pp. 105-120). Bielefeld, Germany: Transcript-Verlag. https://cup.columbia.edu/book/care-home-stories/9783837638059

Research Related to Evaluations of Cracked

  • 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