An interactive theatre program gives voice to the dementia experience.
TO WHOM I MAY CONCERN (TWIMC) is an interactive theatre program that is a vehicle for people living with dementia to share their experiences with each other and the world. It was created by Dr. Maureen Matthews, a nurse and psychotherapist based in Connecticut, in the early 2000s as a way for people to understand the experience of living with dementia. Partner and director Laura Bowley, who is based in Ottawa, joined in 2012 after reaching out to Matthews via Twitter. Bowley had personal experience with dementia — her mother passed away from vascular dementia. She says her family avoided talking about the disease, which made it difficult to get a diagnosis and plan for the future — something she doesn’t want others to have to live through.
TWIMC’s name was inspired by the stigma that people living with dementia often experience after a diagnosis.
“The idea is that when a person is diagnosed with dementia, they often become an ‘it.’ They tend to be objectified and lose their personhood,” says Bowley. “People talk around them; they don’t talk to them. The program empowers people living with dementia to reclaim their personhood, their ‘I.’”
The TWIMC process takes about eight weeks from start to finish. Before participants hit the stage, whether virtual or physical, they share stories of living with a progressive brain illness such as Alzheimer’s disease during weekly discussion groups. Besides trained TWIMC facilitators, no caregivers or family members are allowed in the sessions, which are currently being held virtually, enabling participants to speak freely and put feelings and emotions into their own words. Bowley says helping participants find their voice is an important goal, and benefit, of the program.
“They become comfortable talking about [their life] that way, finding out that they are traveling the same path, that they share a lot of experiences. It’s very validating,” says Bowley.
After about six weeks of meetings, facilitators take what was shared in the group and turn it into a script. The group then comes together a couple more times to review and discuss the script, make any changes and to rehearse. Then, it’s showtime, a moment Bowley says most participants embrace.
“Usually the first thing they want to do [afterwards] is to do the performance again,” she says.
Scripts are typically arranged around five themes that come up in the discussion group: the diagnosis process, how participants have adapted, the reactions of family and friends, support they’d like from care partners and the community, and hopes and dreams for the future. Bowley says this last theme often surprises audience members.
“It’s very counter to what our perception is of dementia, that people are even thinking about the future,” says Bowley. “I think one of the things that strikes people who witnessed a performance or a video is that people living with dementia can have such insight into their diagnosis and into their lives.”
Most groups stay together and keep meeting even after the performance. Some participants, meanwhile, have gone on to become public advocates for people living with dementia.
“They see that they can still have an impact and they want to keep going,” says Bowley. [ ]