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A group of people are gathered at UHN’s Dotsa Bitove Wellness Academy and listening to a song they recently recorded. Moved by the music, one couple starts dancing, causing a ripple effect in the crowd. Soon, the room is alive with laughter, singing, and dancing feet.
This is a scene featured in a new documentary, titled "Music Is Life," which aims to dispel the harmful stigma of loss-of-self associated with dementia. The film draws on research that demonstrates the ways musical engagement can support vitality, creativity, and being in relationships with others.
"We embarked on this research because we wanted to understand how musical engagement can be used, not as a therapeutic intervention, as it is so commonly restricted to in dementia care settings, but as a way to forge meaningful relationships, says Dr. Pia Kontos, a senior scientist at The Kite Research Institute, the research arm of Toronto Rehab.
Musical engagement supports the relational caring philosophy exemplified at the Dotsa Bitove Wellness Academy, where a community of professionals in the fields of music, visual arts, and dance use the arts as a medium for creating deep connections with members experiencing dementia.
And emerging research is backing it up.
Music Is life
Dr. Kontos and team found that, through music, people living with dementia can form relationships with others and express themselves in creative and joyful ways.
"The dominant assumption is that people living with the dementia aren't capable of pursuing meaningful relationships and activities, but this isn't so," says Dr. Kontos.
"We need to have higher expectations of their imagination and creative spirit."
And it's this harmful assumption that the film powerfully counters with examples of how music brings out imagination, playfulness, and humour.
We see members and staff alike, participating in ukulele circles, and joining in sing-alongs. Smiles when they greet each other, and hugs when they say goodbye.
When one individual is asked how music makes him feel, he responds with a mischievous, "it makes me want to dance sexy," while another likened it to eating a good piece of cake. "It's fit to be loved by everybody," he adds.
"With this film, we've created a powerful catalyst for challenging stigma which is so essential for creating a more inclusive society," says Dr. Kontos.
The power of trans-disciplinary work
"Music Is Life" couldn't come at a better time, given the moral urgency for culture change in dementia care.
By leveraging a medium so accessible to the public, Dr. Kontos hopes that those committed to this change will watch the film and learn about the possibilities that exist when we shift the focus of care from management and control, to a relational model that supports relationships, creativity, and human flourishing.
"We're not going to create 'real change' by writing in academic journals, and that pushes us to be innovative," says Dr. Kontos.
"We'll keep at it until we finally achieve the individual, organizational, and societal change that's so critically needed."
Dr. Kontos is part of a transdisciplinary team of researchers and film producers, led by Dr. Christine Jonas-Simpson, Associate Professor, York University and former Director of Philosophy and Academics at the Bitove Academy, and including Dr. Sherry Dupuis, Professor, University of Waterloo, and Dr. Gail Mitchell, Professor Emerita, York University and inaugural Director of the Bitove Academy.
Together, the team has created a cross-sector partnership – and commitment – to challenge stigma associated with dementia and create a new culture of dementia care.