brutal short fragile storm perpetuates dementia care stigma and myths

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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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Image Copyright: bialasiewicz / 123RF Stock Photo

16 Comments

  1. Ps I too kept my promise to keep mum at home, a promise I made to my dad and I would never treat my mum in any harmful way. Even though she’s advanced my mum is happy but I always said as long as she’s happy that’s all I can ask. This film portrays a nasty promise as no love or care or empathy was shown until the final moment when she recognised him. Mum doesn’t always recognise me but she see love and care always.

  2. I found this movie shocking beyond word Susan. I saw the link through Facebook. I care for my mum as you know and find this whole portrayal of alzheimers extremely wrong. It sends of the wrong message. To tie someone up and forcefeed them and the display of such aggression is so wrong. I’m disturbed that such films no matter how short are made and are allowed to be made. Such a talented actor, one of my favourites, shocks me that he’s involved in such a inaccurate film. We have spent so many years trying to change the misrepresentation of alzheimers and films life this send us back years! My mum is advanced now and I moved in to care for her 24/7 and while it is hard and lonely I have special moments with my mum, like you did, and even though she has off days she’s never been aggressive like that movie showed. Getting mum to eat can be difficult but I sit with her, coaxing and gently encouraging her to eat and it may take an hour but never once could I imagine forcefeed It, that would be one sure way of scaring the life out of suffers and would terrify them beyond words. To tie someone up is also shocking, in all my years of caring for mum the thought of anyone doing that is cruel and unnecessary. Why can’t movies be made showing the accuracy of alzheimers, the carers role being gentle and encouraging, the happy special times of seeing them smile and laugh. The positive side of alzehiemers. Yes it can be tiring and exhausting but I wouldn’t change anything especially when I see my mum smile. Filmakers out there go to people who live with alzheimers not those that study it. The people that truly know alzheimers!!!! Chelsea xx

  3. Lorrie Beauchamp on

    Well said, Susan. And someone had to say it!

    What’s deeply disturbing is that they set it up to tie in with the kidnap and torture of young women. Another story in the news just today about that. What you call triggers. It’s morally corrupt to compare this behaviour to caregiving, and deeply wrong to appeal to that sense of violence and dread in the viewing audience. Their strategy of “hook them with horror” is egregious.

    Then I noticed a barrage of inappropriateness – would you even have medications in the bathroom? Was it realistic that he would be pushing bread into her mouth and slapping her? Tying her to the bed like that? Even in the context of Alzheimer’s care, these details are unnecessarily violent in nature.

    Wow. Talk about misinformation.

    • Agree with you as well Lorrie, and thank goodness someone was brave enough to start this conversation! The violence, the inappropriateness of most of the scenes in relation to dementia, and the fear this will encourage, is as you say, truly egregious.

    • The film’s creator argues that this is fiction, not a documentary. One of the problems is that people have difficulty understanding the difference between reality and fiction. I’ve been corresponding with the film’s creator, and hopefully we will be able to move toward something more positive as a result.

  4. Hours later I’m still disgusted by what I saw. I truly thought it was the opening for a horror movie, and then I thought it was a brutally, incestuous situation with a daughter being held captive. How horrid to depict the care partners like this. 🙁

  5. Dear Susan,

    Thanks for being brave enough to write this post; sadly, I am sure there will be plenty of people who think it’s appropriate to depict dementia in this way!

    As you rightly say, it is a well-produced piece from a technical perspective, but depicting dementia like this is outrageous. To make it appear that we (i.e. people like me who live with dementia) behave like this as a matter of course, that is OK to strap us to beds or force feed us, says to the rest of the world that this is “normal” and that it’s okay to abuse people with dementia.

    Worse, it has been done in a way that makes it look acceptable for a family carer to ‘keep a promise’ to keep the person they love at home, despite the fact that doing so may not be in the best interests of the person who is living with dementia.

    It wrongly portrays violence as a given part of living with dementia, which it is not for most of us; far from it. Further, it increases the fear of dementia, which is also unhelpful.

    I believe this kind of film will help keep the many harmful myths alive, as well as increase the stigma and discrimination. It may raise awareness, but at what cost?

    We have such a long way to go to educate the world about dementia, particularly with respect to the fact that violence such as that which is portrayed in this film happens in only the rarest of cases. Furthermore, I think we need to understand that abuse is as likely to occur, perhaps even more so, in institutions where there are often staff and resource shortfalls.

    Members of Dementia Alliance International are unlikely to feel comfortable being characterized in this way, nor would the other more than 47.5 million people diagnosed with dementia worldwide.

    Kind regards,

    Kate Swaffer

    • “We have such a long way to go to educate the world about dementia, particularly with respect to the fact that violence such as that which is portrayed in this film happens in only the rarest of cases. Furthermore, I think we need to understand that abuse is as likely to occur, perhaps even more so, in institutions where there are often staff and resource shortfalls.”

      I couldn’t agree more Kate, and thanks for your comment.

    • Thanks for your support Kate, and I agree with everything you’ve said. Let me take this opportunity to also offer you congratulations on recently being bestowed the honour of SA Australian of the Year 2016. No one is more deserving than you. I often recommend your blog and am delighted to do so again here: https://kateswaffer.com/

      Together we are stronger, and I’m so pleased we are part of the same “ragtag” network of pioneers and advocates worldwide who want to see real and positive change in dementia care everywhere. #WeRock!

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