Dementia on the screen and stage

In performing arts, the boundary between the stage and the audience is known as “the fourth wall.” Breaking this boundary is typically considered a no-no. There are exceptions, of course — Annie Hall, Fight Club, Ferris Bueller’s Day Off — but conventionally, the audience and the performers exist in two separate realities; only one of which, the audience, knows that the other is there. 

Despite this boundary, it’s the performer’s job to engage the audience by telling a story, teaching a lesson, making us laugh, making us cry. That’s the power of good theatre and film: it influences our thoughts, our emotions and, perhaps, our actions. 

None of this is lost on Mitzi Murray, executive director of Calgary’s THIRD ACTion Film Festival, an event that celebrates aging and explores the possibilities of life in late adulthood. This year’s inaugural festival (held in June) screened more than 30 films, some of which dealt specifically with stories of dementia. 

Even though film is one of society’s most familiar and culturally relevant mediums, says Murray, it reflects so few of our stories. Aging, and especially aging with and caring for someone with dementia, can feel tremendously isolating in our youth-centric culture. Getting more dementia stories on the silver screen helps to educate, evoke empathy and reduce stigma in a way that PSAs and health literature simply can’t.

“Film gives you baby steps to build on your empathy and your connection to others,” says Murray. “Who doesn’t want to see themselves [represented] on film?”

Murray is also a caregiver to her mother, who has dementia. Films that reflect her own experience have allowed Murray to communicate her feelings and experiences in a safe, indirect way.

“You get to that point where you don’t really want to talk,” says Murray of the day-to-day ups and downs of supporting a loved one with dementia. “You don’t have to educate every one in your circle. Why not say, ‘Go see Still Alice, or go see one of these films, and then you’ll have a good idea of what I’m going through.’”

Chronicling Reality

Christopher Wynn is a filmmaker in Montreal and has produced and directed two documentaries on dementia. His first film, Forgetful Not Forgotten, is a chronicle of Wynn and his family, including his father who was diagnosed with early-onset Alzheimer’s disease at the age of 57. Meeting younger families while travelling across Canada screening the film inspired Wynn’s second documentary about dementia, Much Too Young, co-directed by Russell Gienapp. First screened on TVO last September (and available online at muchtooyoung.com), it gives an intimate picture of teenagers and young adults whose parents are experiencing various stages of early-onset Alzheimer’s. The children range in age from 13 to twentysomething, defying society’s temptation to categorize dementia as an issue for the elderly, or something to be dealt with only when it lands on our doorstep in some distant future. 

In one scene, mother Moira, who was diagnosed with early-onset Alzheimer’s in her 50s, is exiting a shop on a busy street in Toronto. She is having trouble trusting her footing, or trusting the height of the steps below, or perhaps trusting whether the steps exist at all. She stands in the doorway as her two young, patient daughters gently encourage her. Their mom extends her foot, only to pull it back. It’s a long process for Moira, and an uncomfortable one for the audience. It’s disconcerting to watch Moira struggle with something so seemingly simple, and to worry that another customer might brush past Moira with the kind of haste and contempt that her daughters see, and fear, almost every time they dare to take up space in public. Someone watching this scene in the film might wonder, “Would I have understood what was happening, or would I have felt terribly inconvenienced?”

Finally, Moira takes the step. With relief and celebration, her daughters guide her out of the shop, lovingly holding hands with their mother as they continue on their day together. 

“Why do they do that?” asks Moira, referring to steps. In fairness, the steps were a little steep. The doorframe was a little narrow. Everyone around her is often in a rush. The world does not appear to be built for people like Moira.

“The world isn’t perfect,” offers her youngest daughter. 

This scene teaches us how narrow our view of function is, how we have designed a world and upheld a mentality that cognition and physical ability alone determine whether or not we belong. But it does so with the subtlety of storytelling, not lecture. We don’t learn about dementia, we learn about Moira’s dementia — we learn that steps sometimes stall her. We learn that her daughters love her.

The families in Much Too Young offered their generous consent to be filmed during these private moments, and the result is an astonishing intimacy, one that Wynn felt was important for people to experience.

“At times, [the audience] almost felt like they were intruding,” says Wynn of the reaction to the film. “I think that’s what makes it so much more powerful.”

Sharing Experiences

Representation matters, not just to validate the experiences of so many who are living with the effects of dementia, but to change the cultural narrative of an illness that is often ignored, simplified or shown in a negative light.

That’s what filmmaker Susie Singer Carter sought to address with her acclaimed short film, My Mom and the Girl. Singer Carter plays daughter to actress Valerie Harper who, in the film, exhibits signs of dementia. The film draws on Singer Carter’s real-life experiences with her own mother, who moved in with Singer Carter and her 16-year-old daughter during the early stages of Alzheimer’s disease. Singer Carter refers to this as the year she helped her mother “cross over the bridge,” a stage where her mother knew she had Alzheimer’s, but was resisting it. Looking back, Singer Carter realizes that she was resisting, too.

“I thought I was going to talk her out of Alzheimer’s,” she jokes from her Los Angeles home. “Our relationship was so strong that I was going to get past the Alzheimer’s and go, ‘Mom, come on. Let’s get real.’” 

That difficult process was a gift, says Singer Carter, and one that she wanted to share through her art. My Mom and the Girl (released to the public on Mother’s Day, 2018) is her effort to pull back the curtain and demystify a disease that often has a tragic cultural discourse. Singer Carter’s experience with her mother’s dementia is challenging, yes, but it can also be joyous.

Humour sneaks its way into the film in the very first scene. Harper, playing the mother, is pounding on her adult daughter’s bedroom door in the middle of the night. Perhaps experiencing a memory, Harper’s character is looking for her “baby.” She angrily accuses her daughter of taking it away. Singer Carter denies the accusation at first, but then rolls with it, meeting her mother where she is in the moment, until Harper’s character realizes that her daughter, her baby, is standing right in front of her as an adult. Singer Carter’s voice narrates, introducing us to her mother: “She’s the love of my life.” Harper’s character then calls her daughter an expletive.

It’s not a cheap laugh. It’s a relief laugh. It’s permission to laugh.

Embracing Emotions

That permission — to laugh, or to cry, to be hopeful — is what Calgary puppeteer Michelle Warkentin wants to grant her audience as well. Her puppet show, Family Tear, centres on a mother’s diagnosis of dementia and the family that’s forced to cope. The interactions between family members and the nature of their mother’s dementia were based on research and real-life experiences. Warkentin’s mother-in-law has dementia. She says so many families are going through this very same thing, and that theatre can give people a safe space to emote.

“If you’re crying in the dark, you can just sit there and allow yourself to just let that go,” Warkentin says.

The stage also allows storytellers like Warkentin to use theatrical devices to change the way we think. In the play, a puppet represents the mother’s dementia, distinguishing clearly between the person and the illness. It hovers over her shoulder, visible to the audience but invisible to the characters in the play. As the mother’s cognition declines, the puppet earns more features — eyes, a nose, a mouth. The mother’s worsening condition elicits a visceral reaction from the audience. As the puppet draws more memory by asking the mother to breathe into its mouth, the audience grows angrier and angrier, some even pleading, “Don’t do it!”

At the end of one of the performances, Warkentin noticed a woman who remained in her seat. The room was emptying, but she stayed behind, sitting alone in the row of chairs. She was weeping. Warkentin approached her.

“This is my family,” she told Warkentin, gesturing to the empty stage. She told Warkentin that the play gave her hope, because the family on stage was able to piece things back together. She said to Warkentin, and herself, “Everything’s going to be okay.”

That message, that everything will be okay, is not always the message we receive about dementia. Our cultural assumptions, many of which derive from artistic representation such as films, plays and advertising, often perpetuate a fear around dementia. Living with dementia could only ever be tragedy, we’re often told.

Let the Light in

Julia Gray is a Toronto-based playwright and director whose background in social justice theatre led to a partnership with health researchers Dr. Pia Kontos, Dr. Sherry Dupuis, Dr. Gail Mitchell and Dr. Christine Jonas-Simpson. The team created Cracked, a research-informed play (and now a film that can be viewed for a fee at crackedondementia.ca) that follows various people with dementia — and their families — on their unique journeys. 

The researchers had approached Gray about developing the play because they recognized the important role art plays in changing our negative public discourse. Not only can this discourse perpetuate stigma, but it affects how policies are made, how long-term care facilities are built, and how we interact with people living with dementia in everyday life. Gray says that performances like Cracked invite the audience into conversations that are often difficult and complex, and allows them space to reflect.

With plays, she says, “There’s the potential for people to be far more willing to be reflective on the ways they might be making assumptions about people who live with dementia — more so than just having a didactic lecture.”

The play’s title, Cracked, was inspired by a lyric in Leonard Cohen’s song, “Anthem.” In the song, Cohen sings, “There is a crack in everything / That’s how the light gets in.” Gray was trying to capitalize on some of the negative connotations of the word, as it’s those negative connotations that the play seeks to overturn.

“Something that’s perceived to be negative, or a weakness, is in fact what allows you to be in light in unexpected ways,” says Gray.

One scene in particular often resonates with viewers. The audience hears a foghorn and sounds of the ocean. A family launches a lobster fishing boat into the North Atlantic off the coast of Nova Scotia. The family sings together as they drop lobster traps into the water. Slowly, the main character, a young woman, changes — her singing softens, her surroundings fade. The audience realizes she is actually an elderly woman, living in a long-term care home. She’s singing and gesturing, dropping these imagined traps and drawing the attention of a nurse. It’s three o’clock in the morning. The nurse takes the woman back to bed.

Gray says the scene was based on research from Kontos. People with dementia sometimes enact previous experiences of their lives. These gestures can represent a lived experience, but we don’t always treat it that way.

“If it’s seen as this crazy, meaningless thing, you assume it’s tragic, and you’re going to respond to that person very differently,” says Gray. “But if you work from the assumption that this is probably a lived experience that’s happening right in the hallway at three in the morning, then you approach it with more compassion and attention.”

Gray, the researchers, and the performers hold a Q&A with their audiences after the play. Some people thank them for telling a story about dementia that is accurate, validating and hopeful. Some audience members share their own stories. The team points to resources for people to access help. Gray hopes the story can reduce the stigma surrounding dementia by changing how society sees people living with dementia, but also how people living with dementia see themselves.

“Why would you come out and say you are living with dementia if all you ever see around you is that it’s this terrible thing?” says Gray.

Following a performance of Cracked at a long-term care facility, Gray recalls a woman who stood up in the audience. Her reaction to the play was one that Gray will never forget.

“Having seen this play,” the woman said, “I will no longer hide.” [ ]