KITE Senior Scientist Dr. Pia Kontos uses art to change perceptions about people living with dementia
When Dr. Pia Kontos was a young girl, she would visit her great-grandmother, who was living with dementia, in her long-term care facility. Even as a child, she was struck by how the facility’s staff would treat the older woman as if she were no longer there. In contrast, young Dr. Kontos still recognized the essence of her great-grandmother, even if cognitive changes meant she was expressing herself in different ways.
This experience took place decades before Dr. Kontos became a senior scientist at the KITE Research Institute at UHN , but it stayed with her and would influence her work in trying to reduce the stigma and social exclusion faced by people living with dementia.
“I always felt badly for her and that there was so much more that could have been done to support her,” Dr. Kontos says. “I developed a very deep concern when I came to learn about the stigma associated with dementia.”
Changing perceptions through theatre
Dr. Kontos specializes in projects that involve the confluence of dementia care and the arts, forming two main categories. The first covers the realm of advocacy and activism, where she uses unconventional tools to shift attitudes toward people living with dementia and care practices. While doing research with residents of care facilities, Dr. Kontos observed that there were many meaningful expressions – what she calls “embodied selfhood,” or the idea that people’s sense of self continues to be expressed through their bodies even in the face of significant cognitive decline – that would go unnoticed. Often, care providers dismiss residents’ capacity for self-expression, particularly if the person in question had lost the ability to communicate verbally and showed other signs of significant cognitive decline. She believes that this is largely because people assume individuals with cognitive impairment lose their entire identity.
To challenge this assumption, she took a “show rather than tell” approach and created a series of research-based theatrical vignettes to illustrate examples from her research of people living with dementia expressing themselves in subtle but meaningful and often overlooked ways. The vignettes were designed to prompt audiences, primarily family and professional care providers, to ‘see’ the harms of stigma and the possibilities of living well with dementia when supported to do so.
The impact was so profound that she continued to draw on the power of theatre to trigger change. Her most recent theatre project, Cracked: new light on dementia, which was first staged in 2013 and was filmed in order to reach a wider audience in 2018, won Dr. Kontos and her team the Canadian Institute of Health Research’s (CIHR) $20,000 Betty Havens Prize for Knowledge Mobilization in Aging in 2022.
“I have seen the power theatre has to shift perceptions of dementia from loss and decline to capacity, growth and potential, which in turn fosters more inclusive and quality enhancing care practices” she says. “Engaging audiences intellectually and emotionally is key to personal and social transformation.”
Engaging through creativity
The other focus of Dr. Kontos’ work is the power of participatory arts to enrich the lives of people living with dementia. This differs from art therapy activities that are commonly offered to achieve particular therapeutic outcomes, such as reducing ‘challenging behaviours’, rather than supporting creativity itself. As a result, the bar is set very low for challenging the creative spirit of people living with dementia.
“Dance programs typically emphasize the structured repetition of a set of choreographed movements rather than supporting the unique expressions of individuals through movements of their own,” she explains.
Her work involves researching the impacts of engaging with participatory arts offered by professional artists that are aimed at helping people living with dementia to flourish.
“I’ve observed time and again how people living with dementia can express themselves creatively,” she says. “Engagement with the arts can support social connections and empowerment, and so much more that is important for relational well-being.”
Where creativity and advocacy meet
Dr. Kontos’ two areas of interest often dovetail, particularly when she draws on the creative endeavours of people with dementia to challenge harmful assumptions about dementia. The CIHR prize also recognized her Dementia in New Light project, an innovative and highly artistic website that includes quotes from people living with dementia, theatrical snippets, music and other media to create an interactive learning experience. The goal is to inspire learners – whether they’re health professionals or loved ones – to challenge the ways that people living with dementia are dehumanized and to participate in creating more inclusive and socially just care practices.
Meanwhile, Dr. Kontos’ latest project is the documentary short Dancer Not Dementia, a film about a dance program offered by Canada’s National Ballet School (NBS) for people living with dementia. In addition to co-producing the film, Dr. Kontos, with researchers at Baycrest and NBS are evaluating the impact of the film on perceptions of dance and dementia, and the support of dance for life enrichment. The 20-minute film, available to watch free of charge on YouTube, showcases the power of dance to support sociability, creative self-expression, playfulness, and so much more of what it is to be human. As with Dr. Kontos’ theatre work, the aim is to give viewers an “a-ha” moment by highlighting what people living with dementia are capable of while quashing the perception that who they were before their diagnosis no longer exists.
“We need a paradigm shift,” Dr. Kontos says. “We need to shift the focus of care from confinement and control and punitive intervention towards supporting creativity and joy, and supporting people so they can live well and flourish with dementia. It is possible with the right support.”
This Is KITE is a storytelling series that aims to excite and inspire audiences as well showcase the Institute’s people, discoveries and impressive range of research. The campaign will feature monthly stories and videos that chronicle key projects under KITE’s three pillars of research: Prevention, Restoration of Function, and Independent Living/Community Integration.