The event is a chance for people to see "the possibility of living well with dementia," says its co-leader Dr. Pia Kontos.
An event on September 21, World Alzheimer's Day, will use the arts to help write a new story about dementia. “We want to shift the focus from decline and loss to creativity and vitality,” says Dr. Pia Kontos, a Senior Scientist at UHN’s KITE Research Institute. “This is a chance for people to engage in a discussion, raise awareness and help them to see the hope and the possibility of living well with dementia.”
Dr. Kontos is co-leading the event, Reframing Dementia: Challenging Stigma Through Film & Art. It is a partnership between KITE, Canada's National Ballet School (NBS), and Mid-Career Productions, a Toronto-based, Black-owned film and television production company. Held at NBS’s campus in downtown Toronto, it includes a screening of two short films and a conversation with the filmmakers, followed by a catered reception featuring artwork made by or inspired by people living with dementia, and a special performance courtesy of Caribana Arts Group.
A unique aspect of the event is that it was created in collaboration with people living with dementia, Dr. Kontos says. The artists living with dementia helped decide how their works would be displayed and described, and the event’s emcee is Phyllis Fehr, a dementia advocate who has early-onset Alzheimer’s. “For the audience to see the creative capacities of people living with dementia helps dispel stereotypes about what you can and can’t do as someone living with this condition,” says Dr. Kontos.
Dr. Kontos co-produced one of the two films that will be shown at the event with Sapna Goel of NBS. Their film, Dancer Not Dementia, is a documentary about dancers who are living with dementia and their carers. The second film, Sugar Dumplin, is an award-winning fictional story about a daughter struggling to connect with her estranged father, who lives with dementia, through the foods of his Caribbean childhood.
The goal is to create a space for people living with dementia, caregivers, clinicians and the broader community to engage with film, art, food and conversation – and each other. “It’s really about bringing community together, and allowing people to benefit from the exchange of ideas from that,” says Dr. Kontos. “Active engagement encourages people to be active agents of change.”
The event is informed by research Dr. Kontos has done on the power of film to trigger social change. “We did a study on the impact of Dancer Not Dementia and found that it challenged stigma by supporting new understandings of dance and dementia and creating more inclusive and relational ways of being with people living with dementia”.
This event is also part of a campaign associated with Reimagining Dementia: A Creative Coalition for Justice, an international group she co-founded to challenge stigma and create a more inclusive society for everyone impacted by dementia. The Taking It to the Streets campaign promotes events that encourage the reimagination of dementia on World Alzheimer’s Day and in the month that follows.
“Stigma is rooted in the assumption that with cognitive impairment there is a loss of self,” says Dr. Kontos. “Helping people to see that humanity persists, despite cognitive impairment, is critical to changing how people living with dementia are treated. Events such as this are about helping to trigger this kind of change.”
Tickets and more information are available at Reframing Dementia: Challenging Stigma Through Film & Art.