Research

Raising the Curtain was The Imagination Network’s first project to integrate academic research with support from the Vancouver Foundation. The following is a short summary of the research approach, goals and outcomes in RTC1.

RESEARCH APPROACH

Raising the Curtain (RTC) was a Community Based Participatory Research (CBPR) project guided by the principles of inclusion, participation, and social justice. RTC used CBPR and Community Engaged Arts Practice (CEAP) to collaborate with educators, artists, health care providers, and people with lived experience of dementia. In RTC, CBPR and CEAP processes were co-developed to elucidate social justice issues related to aging and dementia. Through using a participatory approach to creative engagement, we aimed to challenge dominant discourses of aging and dementia and to foster citizenship for individuals with lived experience of dementia.

AIMS

The RTC1 (2017-2019) goals were to:

  1. Increase understandings of the lived experience of dementia by highlighting the sociocultural dimensions of the disease;
  2. Uncover innovative strategies for building an education – art – health care collaboration; and
  3. Spawn creative and innovative approaches to participation, engagement and advocacy for individuals with lived experience of dementia.

The RTC2 (2019-2022) goals were to investigate how participation in collaborative creative engagement could enhance the wellbeing of people with lived experience of dementia, their family and professional care partners and our society as a whole in the contexts of community living and institutional care.

WHAT IS CBPR?

Community-based participatory research (CBPR) is an approach to research that recognizes the role of the social, cultural, physical and political realities of those living on the margins of the society (Reid, Greaves & Kirby, 2017; Taylor & Ochocka, 2017; Wallerstein & Duran, 2008). In CBPR community members are seen as active agents in shaping and sharing their experiences. CBPR aims to foster inclusion and citizenship and works towards positive social change with rather than for, on, or in community (Ochocka & Janzen, 2014). CBPR utilizes unique partnerships, methodological innovation and community engagement in the creation of knowledge to address issues of importance to community members (Reid et al., 2017; Taylor & Ochocka, 2017; Bocarro & Stodolska, 2013).

CBPR, when used to explore experiences of aging and dementia, can expose unquestioned assumptions about aging, dementia and dementia care and can disrupt dominant systems of power that operate at the individual, organizational and societal levels (Thoft, Pyer, Horsbøl, & Parkes, 2018).

What is CEAP?

Community Engaged Arts Practice (CEAP) can be viewed as a grassroots collaborative partnership between artists and community members.  At the heart of the practice is social connection, inclusion, creative expression, shared learning, co-creativity and collaborative cultural creation.  The focus is on the journey as much as the outcome during the experience of art making.  Why is this practice important?  Collaborative artistic expression facilitated by professional artists can provide an accessible medium to amplify, understand, share and celebrate the voice of community members, in particular marginalized populations.  Often the artistic outcomes from the practice are celebrated and shared with the community.  In our community engaged arts practice with persons with the lived experience of dementia and other older adults, we aim to foster meaningful engagement, self-expression, inclusion, and belonging through co-creativity, collaboration, imagination and art making.  Our professional artists come from a broad range of backgrounds in the visual, performing and literary arts – theatre, textiles and costume design, puppetry, videography, photography, music, musical theatre, clowning, song writing – but are connected by their enduring passion and commitment to community engaged arts. 

HOW DID WE COMBINE CEAP WITH CBPR?

RTC was a CBPR project guided by the principles of inclusion, participation, and social justice. In RTC we used CEAP to engage with our research participants in meaningful creative processes and to gather research data on the lived experiences of aging and dementia.

CBPR and CEAP share the same fundamental values and commitments. They:

  • seek to represent marginalized voices;
  • require flexibility, creativity, openness, intuition, analytical and storytelling ability;
  • are driven by issues of social justice;
  • utilize innovative approaches to engage and mobilize community members
  • foster inclusion; and
  • work towards positive social change.

Through the combination of CPBR and CEAP, researchers, artists, health care workers and community members engaged in a collaborative process that brought together diverse scientific and artistic perspectives (Hughes & McCormick, 2014).

CREATING A “THIRD SPACE”

We are constantly striving to create a “third space”.  A “third space” is where disciplines do not compete against each other; rather, they unite to produce enhanced meanings and understandings where equal attention is given to research and art (Levy, 2015).  In RTC, the “third space” is where people with lived experience of dementia, researchers, health care workers, and artists share diverse perspectives, generate new knowledge, and participate in community-relevant art towards social change.

Achieving a “third space” is not easy. It illuminates complexities and differences. In working towards a “third space” we seek to learn new knowledge through opening a space for discussion between group members (Levy, 2015). We strongly believe that embracing a “third space” approach to collaboration can help us to disrupt dementia stereotypes, build public awareness in relation to lived experience of dementia, and create new social ties among people with lived experience of dementia and within the larger community.

 

MEASURING THE IMPACT OF THE RTC PROJECT

In RTC we explored the lived experience of dementia through the ideas, perceptions and creativity of those living it. Throughout the 5 year span of this project we conducted many creative engagement workshops with participants with lived experience of dementia. All sessions were collaborative and included group discussions of lived experience of dementia, art exploration activities and social gatherings. As well, we hosted cultural events to show case participants’ creations. These artistic and educational events included an evidence-based theatrical production, art installations and other art exhibits co-created by those living with dementia.

At all of our project activities we gathered qualitative and quantitative data from the project participants and team members to assess the impact of their involvement on their feelings of inclusion, their experiences of citizenship and community, and their health and well-being.

KEY THEMES 

Four major themes emerged in RTC1:

The dementia diagnosis. This includes a range of competing emotions experienced after receiving dementia diagnosis, from a sense of injustice to acceptance of the diagnosis.

The stigma of dementia. This includes grappling with personal and societal perceptions, attitudes and stereotypes surrounding dementia, and experiences of stigma and discrimination.

Community, relationships and supports. Co-existing experiences of inclusion and exclusion within family and larger community circles.

The social role. Shifts in relationship dynamics and social status related to changing family and social roles.

Key themes explored in RTC2:

Personhood, citizenship and inclusion. The ways in which theoretical understandings of personhood and citizenship can inform efforts to foster inclusion for and with people with lived experience of dementia.

Creative engagement and experiences of dementia. The role of creative engagement in mitigating experiences of dementia, and generating understandings of what is involved in sustaining creative engagement among individuals with lived experience of dementia (the ‘dramaturgies of assistance’).

Care partner experiences. The role of creative engagement in shaping understandings and awareness of dementia among care partners.

PUBLICATIONS

Reid, C., Landy, A., & Henderson, J. (2022). ‘Knocking at the door of humanity’: using co-creation and community-based participatory research to foster citizenship for individuals with lived experience of dementia. Leisure/Loisir, 1-24. https://doi.org/10.1080/14927713.2022.2104347

Henderson, J., Reid, C., Devereux, B., Hershler, C., & Watt, S. (2022). Performing the Lived Experience of Dementia: Revealing Humanity through Evidence-Based Collaborative Creation. Canadian Theatre Review, 190, 53-59.   https://doi.org/10.3138/ctr.190.012

Landy, A., & Reid, C. (2020). Raising the Curtain: At the Intersection of Education, Art, Health Care and Lived Experience of Dementia. Innovative Leisure Practices, 4, 60. http://dx.doi.org/10.25316/IR-15285

PRESENTATIONS AND WORKSHOPS

Henderson, J. (2021/10/23-24) Performing Care, Community, and Citizenship in Backstage Pass. Paper presented at Aging and Social Change 2021 Conference. University of British Columbia (virtual participation).

Henderson, J. (2021/06/25) Performing Care, Community, and Citizenship through Dramaturgies of Assistance. Paper presented at the Canadian Association for Theatre Research 2021 Annual Conference, University of Ottawa, Ottawa, ON and University of Manitoba, Winnipeg, MB. (virtual participation)

Henderson, J., Buck, S., & Reynolds, R. (2020/02/21). Raising the Curtain on Dementia presentation) and Mark Making (interactive activity) presented at the Arts-based Teaching and Learning Forum, University of British Columbia Learning Exchange, and the Downtown Eastside Literacy Roundtable, Vancouver BC.

Henderson, J. (2019) “Dramaturgies of Assistance: Creating a Tidal Pull Towards Inclusivity,” paper presented the Canadian Association on Gerontology Annual Conference (CAG/ACG) Conference, October 24-26, Moncton, New Brunswick.

Bosse, M., Landy, A., & Reid, C. (2019) ‘Raising the Curtain’ on the Lived Experience of Dementia. Oral presentation at CTRA 2019, Quebec City, Quebec.

Hershler, C. (2018, October 25) ‘Raising the Curtain’ on the Lived Experience of Dementia. Oral presentation at Research-Theatre Symposium held at UBC Point Grey Campus.

Reid, C. & Hershler, C. (2017, October 24) “Building the Imagination Network: Raising the Curtain on the Lived Experience of Dementia. Aging: acts of memory and forgetting. Symposium conducted at UBC, Vancouver, British Columbia.

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