Open the Doors

This is an edited transcript of a talk for Open the Doors on 24th September. Open the Doors is based in Australia, 'an innovative, exciting, and inclusive new movement merging revolution with resourcefulness.  Linking bright minds from across the globe who are passionately dedicated to making change in the lives of our elders/older adults/loved-ones.An innovative, exciting, and inclusive new movement merging revolution with resourcefulness.  Linking bright minds from across the globe who are passionately dedicated to making change in the lives of our elders/older adults/loved-ones.'

You can see the whole session at Open the Doors if you like.

https://www.youtube.com/watch?v=4ksN8N1n6sQ&t=20s

The Long Goodbye

In March, the UK Alzheimer’s Society began to broadcast a video on TV, radio and cinemas. This advertisement has been called ‘the unvarnished truth about dementia’. For me, the statement is probably right, and I grieve for that. I want to explain why.

Recently I talked about the advertisement at a meeting of Open the Doors, a new movement in Australia about dementia and human rights. This article is a version of the talk.https://openthedoors.au/latest-news/the-long-goodbye-alzheimers-society-an-ethical-discussion/

You might find it helpful to watch the advertisement if you haven't seen it , but I’ll try to describe the story here. The film takes place at the wake of a woman who has died with dementia. Her son speaks about a number of times when his mother ‘died’. It’s a powerful story, and I know this is the reality for some families who go through the dementia process. But at the same time, I felt strongly that this video gave a message which was deeply unhelpful, even damaging. I started a petition which began very small. In the end there were over 1700 signatures. Over 200 people complained to the Advertising Standards Agency, who investigated the film. The investigation decided that the complaints were not upheld. The advertisement was broadcast again, and is still being shown extensively.

Here, I write about the impact and the meaning of this film for me.   

The main character feels as if his mother died when she couldn’t cook Sunday lunch, when she couldn’t get dressed in her bright clothes, when she forgot people and names, when she refused to go in to Christmas lunch.

For all their good intentions and their love, this fictional family, based on a real family, have not been supported well enough to understand what dementia is and what a person is. They’ve not been supported well enough to have ways to move past seeing a change as a death. They’ve not been supported well enough to have a toolkit of strategies to work with, and models of communication and relationship which move beyond their own needs to be named and recognised.

They’ve not been supported well enough to take care of themselves so that they can bring their best to their relationship with someone living with dementia. Perhaps they’ve not been supported enough to feel there’s space to still be themselves, to rest and restore themselves. Maybe they’ve not been supported enough to feel safe to look dementia, and dying, in the face, to accept that and to leave fear behind.

And that’s what I grieve.

For me, the statement ‘this is the unvarnished truth about dementia’ needs to change. Maybe an alternative would be ‘this is the unvarnished truth about how we as a culture deny people living with dementia, and the people around them, the possibility of a loving, conscious process which will include dying at some stage.’ And maybe ‘this is what happens when we don’t listen to what someone living with dementia can offer us, can share with us’.

I’m one of those people living with dementia. After I was diagnosed, I thought this was the end. But when I met with other people living with dementia, I saw that a diagnosis is far from the end. There was much to learn, and so much to experience.

Maybe you can listen to what we communicate, to what we feel, to our humanity, to our personhood. Maybe you can respect and empathise with us, rather than dismiss and patronise us. Maybe you could learn something from us. Maybe we could get closer to each other, not divided and distant.

So potentially the film is full of truth, not about the nature of dementia but about the lack of awareness, the lack of compassion which surrounds dementia. It’s full of truth about how we see a woman’s role, a mother’s role.  It’s full of the consequences of believing that memories are who we are.

I’m sad that this man feels so much loss. Maybe he doesn’t have to. I’m sad that we don’t get to see the mother except as a young woman, or hear the voice of the mother later.

I’m grieving about a charity which thinks this is the reality of dementia, which seriously puts us all through the pain and damage of our fears and our assumptions about how living with dementia is, and how it can be, and which thinks it’s doing us all good.

I’m also grieving that charities who support people affected by dementia feel that the only way they can get the support they need themselves is to offer this kind of story to raise funds, and also to raise awareness. It seems to me that the ‘devastation’, the ‘tragedy’ of dementia is less about dementia itself than it’s about how people living around and through this process are seen and treated.

That’s the tragedy for all of us. This film shows the depths of misery to which everyone concerned can sink, how their own humanity can be reduced.

Rather than a narrator at the end of the film telling us that the picture is real, this is how dementia is, he could tell us how it doesn’t have to be like this story.

We deeply need to hear that, although it might seem alien for now. This film is being seen by people living with dementia and by those who care for them, it’s being seen by people who haven’t yet encountered dementia, it’s being seen by people who make decisions about dementia and the future. It comes from one of the biggest dementia charities in the UK, so we’re likely to believe it must be right. This film is shaping the beliefs of everyone who sees it, and shaping them against everything so many people and organisations like Open the Door are aiming to do.

This is the tragedy. Not the tragedy of dementia, not the tragedy of the death after death that the son in this film experiences. The tragedy is that we still prevent many people living around and with dementia from finding joy, finding beauty, and finding themselves, through the misunderstanding and the mistreatment they experience.

I’d like to whisper after each of the statements in the film: but you could cook the lunch with your mum. But your mum could still wear the bright clothes she loved, if you help her.  But your mum still loves you, even when she doesn’t remember your name. She may feel afraid, but if you meet her and love her, she won’t push you away. If she knows she is still herself, but changed, she might feel less afraid. She might be able to share in the things she’s always loved. None of us is the same person we were when we were young. We don’t have have to grieve about aging.

You might be able to laugh together, to hug each other, to listen to each other however that communication is expressed. We might all benifit from that, respect for each other, a wilingness to meet in the moment. Each moment can be a possibility, not a goodbye.

So yes, we need to talk about dementia, we need to face and know its truths. Instead, this film brings a distorted view into our homes, our families, our cinemas, our radios, our cultures and our beliefs. That view can only cause damage. It can only increase the damage which is already here.

There is a tragedy, and this film is part of the tragedy. Dementia does not have to be a tragedy, it does not have to be a series of losses and pain. A life with dementia can be full of laughter and joy, of music and colour. There can be many years of a full life after a diagnosis. Do we want to live those years as if they were a series of deaths, or as a precious gift?

It’s a tragedy that so many of those lives are impacted by the attitudes of people around them, by the attitudes of our cultures, by our fears of dying and death. We see ourselves as others see us: our lives are diminished by being seen in such a distorted, stigmatised way.

This film could have been a force for good.

It’s a tragedy that images like this push all those possibilities further and further away.