‘Profound’ and ‘powerful’ pilot program shines light on life with dementia
By Kristian Partington
September is World Alzheimer's Month, a time for organizations, supportive caregivers and those living with the disease and other forms of dementia around the world to raise awareness, challenge stigma and help envision the condition from a new perspective.
The theme this year, is #Remember Me, a concept that resonates deeply with team members at Schlegel Villages, for in the process of supporting residents and neighbours they all come to know Alzheimer’s disease and other forms of dementia closely. Remembering there is a person before the diagnosis is one of the most crucial things team members and loved ones can do, and programs such as To Whom I May Concern (TWIMC), which is currently being piloted in three villages, helps people understand the importance of this idea.
TWIMC is an interactive, theatre-style program that helps people living in the early stages of dementia give voice to their often unspoken hopes and fears. Under the guidance of a trained facilitator, participants share their stories and co-create a script, which they then perform for an audience of loved ones, supporters and neighbours.
Small groups of residents from the Villages of Arbour Trails in Guelph, Humber Heights in Etobicoke and Brampton’s Sandalwood Park have been working on their scripted sessions for the past few months. The first preview of the work took place at Arbour Trails in early September.
Sandalwood Park social worker and volunteer coordinator Melynda Anderton has the honour, as she says, of working closely with each of these groups to facilitate discussion and help organize the many thoughts and feelings into the final script, which is approved by the group. She says the entire experience has been a powerful one as she’s grown close to each of the residents and had precious time to sit and truly hear with blunt honesty what life in the shadow of dementia is like.
“Residents who were involved really embraced the idea of teaching others about what it’s like to live with dementia,” Melynda says. “They really felt that empowerment.”
“Though I compiled the script,” she points out, “I’m compiling their stories, their thoughts, their fears – all of their lived experience. I’m just the worker bee in the background putting it all together.”
She says the sneak peak reading at Arbour Trails was an “excellent” way to begin sharing the work that began several months ago with weekly meetings. The final script, however, as powerful as it is in terms of sharing the lived experience of those living with dementia, is not the only positive outcome of the program. As weeks went by, Melynda watched an organic support network grow among the groups, and she expects those relationships to remain strong moving forward, the support sturdy.
“The residents themselves had mutual support for one another,” Melynda says. “They developed friendships and they grew more and more comfortable as the weeks went on in sharing these experiences and their journey of living with dementia.”
Melynda, who recorded each session before carefully extracting key sentiments and feelings to compile the script, felt an amazing sense of gratitude for being able to share each person’s reality so intimately.
“It has been the most amazing experience for me and I’ve been absolutely privileged to have been a part of those sharing groups,” Melynda says. One of the best ways to challenge the stigma that surrounds dementia is to share the lived reality, and if the first Arbour Trails reading is any indication, To Whom I May Concern will be a formidable tool.
“It’s so powerful,” she says. “It’s almost overwhelming, emotionally, to hear them reading it. It’s so profound.”