Dementia, depicted: The role of the arts in explaining Alzheimer's

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The week before last, Nicole Cliteur took a deep breath and prepared herself to watch Still Alice on her laptop before the Oscars were aired. The movie, which would win Julianne Moore the best actress award for her portrayal of a linguistics professor diagnosed with early-onset Alzheimer's, is a two-hanky experience for even the most disinterested viewer.

For Cliteur, though, it was an emotional marathon that left her with a powerful urge to visit the grandfather who can no longer recognize her.

In the past year, there has been a wave of movies, plays and novels that feature characters suffering from Alzheimer's or some form of dementia.

In addition to Still Alice, first-time English novelist Emma Healey published Elizabeth is Missing to great acclaim. In Britain, Knockabout Comics just released an English translation of the much-noted Wrinkles, Paco Roca's unflinching graphic novel set in a nursing home.

After all, writers are not social workers, let alone doctors. There is not much point judging the social utility of any work of art, and yet, if fiction can be said to have some larger purpose than to entertain or enlighten, it is surely the creation of empathy. A play, a movie or a novel can place us directly in somebody else's shoes.

"My grandpa doesn't have the ability to tell people what he is feeling; he denied the diagnosis [of Alzheimer's] so I never had a chance to discuss it with him," Cliteur says. Still Alice filled in some gaps: "It gave me insights into how he might be thinking … how he might be feeling. Maybe he is thinking and just can't communicate. I had a very strong urge to go and see him."

Depicting dementia in fiction is hardly new – we can perhaps identify some form of it in the rash decisions and violent temper of Shakespeare's King Lear – but its currency today can likely be attributed to the baby boomers' anxiety as they enter old age. The Alzheimer Society of Canada estimates that by 2031, 1.4 million Canadians will be affected by dementia, almost double the number who suffer today.

"It's the nightmare for all of us; we'd rather die young," says playwright Diane Flacks, reflecting on how she came to create the character of a pediatric oncologist suffering from early-onset Alzheimer's in Waiting Room, produced by Toronto's Tarragon Theatre in February. "It's the zeitgeist."

Frightened, we want answers. Jay Ingram, the Canadian science writer and broadcaster, has just published The End of Memory, a natural history of Alzheimer's, and he has found that people always have three questions for him: Will I get the disease? Is there anything I can do to prevent it? And, if I do get it, what will it feel like?

He has responses to the first two – including "walk 40 minutes a day" – but nobody can give a definitive reply to that last one. That is where fiction steps in – whether it's with a gentle Hollywood treatment such as Still Alice or a tough-minded approach such as Wrinkles – to consider what it might feel like to lose cognitive function.

By necessity, the answers are speculative, and as varied as their creators. In the original novel on which Still Alice is based, author Lisa Genova tells the story from Alice's perspective, using a limited third-person narrator to describe her thoughts and perceptions as the disease advances. Healey goes further in Elizabeth is Missing, using a first-person narrator, the elderly and forgetful Maud, to tell the story of the mysterious disappearance of her friend Elizabeth. Maud, who cannot remember where she's left her cup of tea let alone when she last saw Elizabeth, cannot get anyone to believe her story, which the reader is forced to piece together alongside her.

In The Other Place, the Broadway play that was produced at Toronto's Canadian Stage in February, playwright Sharr White gives most of the lines to Dr. Juliana Smithton: She's a highly competent neurologist doing research on an Alzeheimer's drug but has had a worrying mental lapse. She is also separating from her husband and reuniting with an estranged daughter. Gradually we realize this is only her reality; others believe she is delusional on several fronts.

Both Elizabeth is Missing and The Other Place feature highly sophisticated uses of the literary technique known as the unreliable narrator to destabilize an audience in a way that mimics the confusion of a character. In other places, the artistic depiction of that confusion can be startlingly simple: In Roca's Wrinkles, when the central character fails to recognize his roommate in the nursing home, the Spanish graphic novelist just erases the man's facial features.

How effective are these devices in eliciting empathy or explaining disease? In families marked by dementia, the artistic encounter can help build crucial connections for those witnessing the condition – or even for those suffering it themselves.

"I was losing my words; I was losing my communication skills," recalls Faye Forbes, a 62-year-old Halifax woman who was diagnosed with Alzheimer's four years ago and read parts of Still Alice at the time. "I felt very alone even though I was surrounded by loving people who were trying to help. Was I making all this up? Was it just a dream? To have someone else's story so vividly told was reassuring. I wasn't alone."

Others are critical of fictional treatments of dementia, which they feel sugar-coat its bitter aspects and leave out the nasty realities of wandering, incontinence and violence.

"It's getting us to talk about it, but it's going to keep us in this Hollywood idea – this is just forgetfulness," says Carolyn Poirier, a 26-year-old Torontonian whose mother was diagnosed with early-onset Alzheimer's when she was 19, shortly after they had both read Still Alice. "That is the just the start of it, forgetting; it's forgetting how to swallow, forgetting how to urinate."

Another common criticism of all these projects is that, for reasons of drama, they select particularly well-educated and high-functioning adults as their protagonists. "Many reflect people who have privileged lives, they are professors, doctors, celebrities," notes Sherry Dupuis, a professor at the University of Waterloo who seeks to improve care for people who suffer dementia. "Somehow their suffering is more tragic than all the other people who live with it every day. Their fall from grace is so complete … compared to my neighbour down the street. That's a problem."

Dupuis is fighting what she calls this "discourse of tragedy" because she believes doomsday images of dementia dehumanize those who suffer from it and thus affect the kind of care they receive. One of her tools is a play called Cracked, a collective theatre creation that aims to present a wide variety of Alzheimer's stories and counter the notion that a diagnosis is necessarily tragic.

Still, the typical fictional Alzheimer's story seems to avoid tragedy too, preferring to end well before death with a moment of insight, affirmation or at least respite. Audiences can only stomach so much sadness.

It is our Lear-like cry against the awful possibility of losing our minds – "O, let me not be mad, not mad, sweet heaven" – that drives us toward depictions of dementia, but what we want to take away from them is hope.

Dr. Peter Whitehouse, an American neurologist and author of The Myth of Alzheimer's, says patients and their families come to him looking for nothing else. But where hope is to be found is a topic of some controversy in health care. The medical community mainly stresses research (especially pharmaceutical), but those involved in the social aspects of dementia all warn there is no drug in the pipeline that might promise an imminent cure. Whitehouse argues society should focus on care not cure, and that community, family – and perhaps art, too – are the real source of hope.

"People say cure but they don't say what cure is. We all age differently; nobody thinks Alzheimer's is a single disease," he says. "If we can really explore and explain – and fiction helps you do this – what it means to be losing brain function, what it means to age, it gets us into what it means to be human in a profound way."

Art can become a place to explore the ontology that dementia forces upon us. Can Alice still claim to be herself? Wendy Mah, a 38-year-old who lives in Edmonton, saw her mother face that question directly, after she lost all short-term memory and the ability to link cause to effect before moving to a nursing home. "Although not one for introspection or sentimentality, she once said to me in Chinese, 'I've lost my essence. I am no longer the person I am.'"

Mah has decided she doesn't need to see the movie.