Museum workshop lets dementia patients explain the art

Summary

A series of workshops at Ghent’s museum of contemporary art helps caregivers understand how people with dementia experience life

Beyond the world of meaning

Dementia is not only about loss. Those suffering from the disease could also be experiencing life more directly, uncompromised by words, meanings or expectations.

At least that’s how Ghent artist Bie Hinnekint sees it. At the city’s museum of contemporary art, Smak, Hinnekint has invited dementia patients and their caregivers for a series of workshops. To goal of Demo-Memo is to let them experience art together.

Ten years ago, Hinnekint embarked on a mission to promote a more positive image of old age. Through contact with elderly people in residential care centres, she became appalled at the way elderly care was perceived and organised.

“Old age is not a sickness or suffering,” she says. “There was a clear need for a change in attitude.”

Four years later, she founded The Courage to Grow Old foundation, with an open-source online directory of interviews with inspiring elderly people. “Those excelling in the art of growing older, like curator Jan Hoet, singer Rocco Granata, musician Roland Van Campenhout and sculptor Koenraad Tinel,” Hinnekint says. “They each answered 10 questions on growing older.”

Pure existence

Demo-Memo, her latest project, draws on her conviction that artists and people with dementia experience life more directly. “I believe people with dementia strip the world of meaning and turn to a purer form of experience.”

As conscious thoughts gradually disappear, she continues, “there is more and more space to experience things as they are. Artists, too, try to attain the world of pure existence and direct experience, independent of meaning and without words.”

Finally we have an opportunity to be heard and say what we think, not what we’re supposed to think

- A dementia patient

As they tour Smak, the dementia patients decide where to go. “Instead of trying to make people cling on to our world, as we’re always inclined to do, this time we follow them,” Hinnekint says. “Without a guide to tell us about art history or movements, we focus on their experiences and reactions to the art.”

According to Hinnekint, people with dementia retain imagination and enough language to put their experience into words. Their partners and children are stunned at their reactions.

“There’s always an abundance of energy and laughter,” Hinnekint says. “One of the people with dementia once told me: ‘Finally we have an opportunity to be heard and say what we think, not what we’re supposed to think.’”

Demo-Memo is intended to empower those with dementia, but also to help their families cope with the disease. “Most of their pain is caused by the fact that they want their loved ones to stay who they were – their father, mother, wife, husband,” Hinnekint says.

New connections

The family members, she continues, “want the person to remain within our realm of meaning. But you might even call it the world of fiction. What does ‘father’ mean for someone who has dementia? It is a concept, a construction.”

Through the workshops, she says, caregivers begin understanding how people with dementia experience the world. “This helps them form a new connection with their loved one.”

At Smak, the caregivers are asked to remain silent. All attention is directed at what the participants with dementia think and say.

Someone always transcribes everything that is said, and from the transcript, Hinnekint creates a poem, which is then read aloud to the group. In two years of running the workshops, she has compiled a series of 11 poems. Her goal is 100.

Photo courtesy Smak