The nine-minute short film Fragile Storm opens with a young woman being tied to a bed by an older man. It appears she is being held captive. The atmosphere is dark and chilling; like a horror movie. The woman is clearly terrified; she screams and pleads.
“What do you want from me?” she asks her voice cracking with fear.
“I want you to do what I say,” he says threateningly as he straddles her. It looks like he might be about to rape her. It’s creepy, violent and scary. The jailer is alternately nasty and nice with his victim in the way some abusers behave. In the next scene, the woman is tied to a kitchen chair as the man tries to force-feed her a watery broth. She spits it at him. When he shoves a piece of bread in her mouth, she bites his hand. He responds by slapping her hard across the face after which he collapses with his arms around her, seemingly guilt ridden.
We learn in an unexpected twist that the young woman is not a young woman at all but an older woman, the man’s wife. Apparently, she is living with dementia of some kind. The film flashes back to a scene in which the man promises to always take care of her “no matter what.” It seems “no matter what” has become a hellish prison from which neither can escape.
As a film, Fragile Storm is arresting. It’s skillfully shot and masterfully acted; it’s compelling to watch. Not surprisingly, it’s garnered a host of awards on the festival circuit. As one friend commented: “It sucks you in, it’s scary, like a scary movie, but then the twist is he isn’t her captor he’s her husband just trying to keep a promise.”
There’s no denying the clever twist, and the underlying love story. But the film sickened and angered me for the way it taps into people’s fears and reinforces the stigma associated with dementia and those who live with it, and perpetuates the harmful myths that better dementia care advocates around the world are trying so hard to dispel – myths that say, for example, that dementia inevitably causes those who live with it to become aggressive and violent. People who live with dementia are people; they respond to adverse circumstances in the same ways we all do. But because they live with dementia their normal behaviour is deemed aberrant.
We don’t need myths like these reinforced. Instead, we need people to understand what causes this kind of behaviour and to equip care partners with the knowledge and skills required to reduce behavioural expressions that are problematic. Fear mongering is not useful. Neither is terrorizing people who live with dementia by physically and chemically restraining them (including tying them to beds and chairs and force-feeding them); this is abuse.
I fully understand the film is a dramatization; it’s a movie, fiction not reality. But it tells a story that is meant to reflect reality, and I don’t believe it does, or at least not the reality of the majority of dementia care partnerships. Do violence and abuse occur? Undoubtedly they do. But are they the norm when family members care for their loved ones? I think not. In fact, I would argue that aggression, abuse and neglect are more prevalent in institutional environments than in people’s own homes. It’s irresponsible to fuel fears with this kind of portrayal (fictional though it may be) of what caring for someone with dementia is like.
ChangingAging pioneer and dementia care advocate Dr. Bill Thomas tweeted that he found the film “creepy as hell” and couldn’t watch it through to the end because it made him “nauseous.” Dementia care advocate, author and prolific blogger Kate Swaffer, who is one of the founders of Dementia Alliance International and who lives with dementia herself, wrote:
“I am almost without words to say how dreadful I think this is, and how far back it will take the work of so many global advocates living with dementia, trying desperately to stop the stigma and myths. Showcasing it like this, as if it is always like this, simply ensures the fear of dementia is heightened, and perhaps even more people will avoid getting diagnosed.”
Long-time care partner P.P. said this in a forum comment:
“I found it very disturbing. As a care partner I can’t imagine restraining my loved one. I understand his frustration and it clearly shows the emotions of both parties, but all I could think was that the poor man needed help and education. My heart breaks for both of them, what a sad situation they are in. That is why support groups and other forms of education are so important. Unfortunately, not everyone knows how to access the help they need. We must all speak out about our situations and not be afraid to reach out to others, we are all in this together.”
Another long-time care partner said:
“I’ve just watched the first few minutes of this. It’s horrible and to think that it’s happening around us. It’s a shame anyone would have to live like this. I found this so upsetting that I’m not sure I can finish watching it. I’m heartbroken.”
Those who conceived and produced Fragile Storm are clearly talented filmmakers. They know how to capture and keep an audience’s attention, except for those who can’t bear to see others in such pain. Next time I hope they use their skills to create positive change instead of further entrenching harmful stigma and myths.
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