Schlegel Villages prepares to offer a new voice for people living with dementia
By Kristian Partington
“This is the face of dementia,” says a woman looking into the camera. She is part of an online community for people living in the early stages of the life-changing diagnosis.
“My face is not angry,” she continues. “Our faces are not ugly; our faces are not dark; our eyes are full of life; our smiles are genuine.”
The video clip is one of a few introducing the concept of To Whom I May Concern® (TWIMC) – a unique project that is reframing societal conversation about dementia and the people who face changing perceptions because of it. TWIMC is an interactive, theatre-style program that helps people living in the early stages of dementia give voice to their oft 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 professionals.
It’s a program that Schlegel Villages director of education and program development Jessica Luh Kim has been aware of for at least three years and she’s now excited to introduce it within the organization. Beginning in late February, TWIMC founder Maureen Matthews will be joined by Laura Bowley of Mindset Centre for Living with Dementia to begin training facilitators. The program is expected to begin in two pilot villages in early spring.
“We’re inviting people who are in the earlier part of their journey of living with dementia to come and share their experiences,” Jessica explains. “These experiences will then be captured in a format to be shared in different ways.” The hope is to then roll the program out into other villages and to the wider communities beyond.
“It’s been a dream of mine to bring the program here and capture our residents’ voice in a different way, in a creative way. It’s a safe forum where they can share what it’s truly like living with dementia.”
Laura, the director of Mindset Centre for Living with Dementia, partnered with Maureen a few years ago because she so admired the way TWIMC was reshaping the dementia narrative and says she is excited to introduce the program to Schlegel Villages.
“It is really helping us to understand dementia through the actual experiences of those who are diagnosed with the disease,” Laura says of the TWIMC program. The sad truth is that when people hear the word dementia they almost always recall the images society has relentlessly peddled of a person in the later stages of the journey, she adds. These difficult images are what people tend to associate with dementia, which often leads to feelings of isolation and loneliness within the person who’s now facing an uncertain future.
Society’s typical view of dementia, Laura points out, “is all coming from the perspective of what’s been taken away and the deficits, rather than the assets people still have. By having more forums for people with dementia to speak out, we’re able to talk about that experience in a way that hasn’t been done before.”
Changing the dementia conversation to one of assets and strengths versus deficits and loss is a critical step towards enhanced life quality for those living with dementia and their loved ones.
“Ten years ago the first group of people with dementia took the stage in New York City and To Whom I May Concern® was born,” Maureen recalls. “The performers received a standing ovation, as has every group after them. The voice of the person with dementia changes hearts and minds, and with that voice comes a face that is ‘full of life’. Laura and I are delighted to bring TWIMC to Schlegel Villages and all the audiences that will have that same opportunity to hear a new voice and see a new face.”