AGO tour is a diversion and equalizer for dementia sufferers, caregivers

During a recent tour at the Art Gallery of Ontario for people with dementia and their caregivers, the group was sitting on folding stools in front at Claes Oldenburg's Floor Burger.

The imposing piece of pop art, a giant hamburger made of painted canvas, sat plopped in the middle of a room full of modern works. A volunteer guide spoke about it in some detail, then tried to solicit conversation. "When you think about art, you think about paintings on a wall …"

"And a pickle," replied Randy, peering at the hamburger's green topping.

Throughout the one-hour tour, Randy, who was diagnosed with Alzheimer's disease several years ago, was quick with quiet one-liners, helping to break the ice. His companion and caregiver Joyce smiled, appearing used to his asides.

The group turned to face Jim Dine's Black Bathroom #2, a utilitarian bathroom sink mounted onto a hanging canvas, all aggressive abstract bluntness. The viewers were asked if they liked the sink.

"I wash my hands at it," Randy deadpanned.

What was most noticeable during the recent tour, held monthly and organized with the Alzheimer Society of Toronto, was how much it felt like any other museum talk. The tone was gentler and only a handful of works were discussed in the course of an hour. Yet it felt only subtly tailored to the needs of this audience, and that's the whole point. It's an approach that was developed at New York's Museum of Modern Art, which has run a program since 2007. It has since been adapted by museums such as the AGO, the Royal Ontario Museum, the Art Gallery of Hamilton and others, part of a growing international movement to expand museum access.

"Really, what makes this stand out for us as a program aren't just the conversations that occur on site, but it's also the ability for the caregiver … to have a conversation about something other than medical care," said Melissa Smith, the AGO's coordinator of gallery guides and adult education officer.

The tour acts as both a diversion and an equalizer. Both sufferer and caregiver can take a break from their usual roles. In fact, museum guides and educators say that it's often difficult to tell which visitors have dementia and which are the caregivers.

It also helps foster a new connection, said Francesca Rosenberg, director of community, access and school programs at MOMA. "They're learning about each other through the art. There may be memories that come up, long-term memories, that will spark something new."

Around 747,000 Canadians are living with Alzheimer's or other forms of dementia. That number is expected to double in 15 years, according to the Alzheimer Society of Canada. Art in particular helps sufferers to stay engaged in their surroundings and connected with others, said ASC spokesperson Rosanne Meandro.

The Art Gallery of Hamilton's program, in partnership with St. Peter's Hospital, also includes art-making, with caregivers sometimes helping to guide the hands of more advanced Alzheimer's sufferers. And for those at very advanced stages, a simple hand gesture or gleam of recognition in a patient's eye can be a huge accomplishment and wonderful to witness, said Laurie Kilgour-Walsh, the gallery's senior manager of education.

In Toronto, the AGO tour can also accommodate visitors with more advanced Alzheimer's, although the tour I attended was not geared for those with advanced disease. The AGO volunteers are said to be trained to handle those situations. A social worker from the Alzheimer Society also accompanies the tour.

"We go over that quite rigorously with the education officer from the Alzheimer Society, also when we're workshopping in the gallery spaces," that is, examining the collection and new exhibits for possible inclusion in the tour, "to understand what could be a trigger," Ms. Smith said.

One way to adjust the conversation for more advanced sufferers is to be more succinct, asking simple yes-no questions about colour or composition. Yet the aim of the tour isn't to continually feed intellectual stimuli and spark a certain kind of response. It's primarily to offer a welcoming environment to enable communication if it comes.

"This is supposed to be about enjoyment. It's not supposed to be anything more than that," said social worker Victoria Jakobson quietly after the AGO tour, during a half-hour support session over cookies and coffee in the gallery cafeteria for the tour visitors.

For those with advanced dementia, confusion about their surroundings can quickly exacerbate levels of anxiety and fatigue. Where's home? Are we safe? The anxiety is painful, both for the dementia sufferer and the caregiver. Despite those challenges, museum educators note that looking at a work of art is something even advanced Alzheimer's sufferers are still able to distinguish. The understanding of the separation between themselves and the artwork remains, helping to unlock thoughts.

"A couple of tours ago," Ms. Smith said, "we had a woman start to speak of a relationship that she had with someone who she was reminded about in a painting. And her daughter had no idea [about it]. And so that created a new place where they could have conversations that they wouldn't have had before."

In a study of MOMA's program, researchers at New York University concluded that the program's social side was most important to visitors, drawing out memories in an accepting and validating environment. What's essential is for the guides and program leaders to set a stimulating but calm tone – "never overly didactic or condescending, but rather warm and interactive," they reported.

At the AGO, the two guides had a soft approach but got the visitors participating. One caregiver volunteered at the guides' suggestion to test whether the dark eyes of the Marchesa Casati by Augustus John follow a viewer walking past the painting. They do.

"I'm irresistible," he joked to his smiling wife, who has had Alzheimer's for three years.

On the most basic level, the tours offer patient and caregiver something different to do. It's easy to forget how limited the options are, Ms. Rosenberg said. Going to a movie can be noisy, anxiety-making and too physically constricting for dementia sufferers. Even a park outing or going down the block for an ice cream can be very difficult when they involve wheelchairs or walking aids, bathroom breaks and fatigue. The less obvious beneficiaries of the programs are the museums themselves. Making galleries more accessible to those with dementia and their caregivers has the knock-on effect of making them more accessible to everyone. It sheds light on barriers of physical access and even attitudinal ones among visitors and the museums themselves, MOMA's Ms. Rosenberg said.

"We can then think about those accommodations across the museum and really enhance the experience for all visitors," she said.

The next Art in the Moment Tour at the AGO is on May 10. For more information, contact the Toronto Azheimer Society of Canada at contact@alzheimertoronto.org or 416-322-6560.