Are we understanding?

Poetry has been the centre of this blog so far. I find myself thinking more and more about our society’s attitudes and responses to dementia, and feeling strongly about that. I’m not an academic or a journalist, and my knowledge is limited. In this post, I’m writing about the portrayal of people with dementia in the media. I’d love to read your thoughts, as comments or emails.

This image is a picture of Auguste Deter, who was used by Alzheimer in his research into what was later called Alzheimer's Disease. I'd like to know more about that history, and those people. If you can help with that, please let me know.

Perhaps I can also mention Knowledge is Power. Published by Innovations in Dementia, it's a guide written by people with dementia for people who have been diagnosed with dementia. Click here to find it.

Are we understanding?

The Alzheimer’s Society is showing TV ads picturing people living with dementia. I find them chilling, and I know other people who do too. The ads play into every stereotype about dementia. They try to tweak people’s heart-strings into donating money through playing the tragedy card. I turn off the TV.

It’s a big problem. We already have to fight our way through bucketfuls of misinformation and stigmas. I’ve been diagnosed for over a year now, and as I’ve written in this blog before, I’ve been shocked by some people’s reactions – though they don’t come from people who know me. I’ve watched how the fear generated by the tragedy stories deters people from asking for an early diagnosis. Combined with the lack of funding in the NHS, diagnosis can take years.

I wonder if the social stigma, the lack of positive, constructive responses and the inability, or unwillingness, to listen to us are more damaging than the symptoms of dementia. I know I’m at an early stage. I’ve been told that I may have around ten years of active life ahead – until I reach the average age of death for women in this country, 85. I’m okay with that. People close to me have died with dementia. I’m not unaware of the difficulties everyone who encounters dementia face.

Forgetting things often doesn’t matter - we can laugh about it. Why does forgetting become a trigger for dementia fears? I can check my diary to help me remember what happened last week, or yesterday; I don’t have to beat myself up about it, and I don’t need criticism or pity. I can use various strategies, solve some of the problems. I can use the time chasing memories for being in this moment. Alexa reminds me what’s important. I’ve heard this week about Apple Tags, which can help us find important things like bags and cars. We know that our senses will change – and we can take account of that if we’re given the right information from the start. And I meet people diagnosed with dementia who go on contributing to their communities and enjoying life, for years.

But our emotional reaction to what’s happening is viewed ‘just’ as a symptom. That gives people permission to ignore those emotions, to be impatient, even to give mind-numbing medication. How would you feel if that happened to you? It takes us back to the time when mental difficulties were treated with icy baths and isolation. But what if anger, fear, distress are natural, human responses to what's happening? What if withdrawing is a response to being ignored and ostracised? The more comfortable response (for others) is gratitude, quietness, silence. Are those ‘better’, or are they just more comfortable for others? These attitudes deny and silence our deepest experience.

As a culture, we value memory and cognitive thinking very highly. Might it not help us and many other people who are different if we extended that? Could our buildings, our institutions, our attitudes change? Could life become easier, more creative, more simple, more peaceful for us all?

So when I read the Alzheimer’s Society CEO’s response to criticism about this kind of fund-raising, I think that it perpetuates everything we should begin to unravel. I could tell stories about people who can communicate even in the last stages, when others learn to listen to their way of expressing themselves. There are books like An Alzheimer’s Surprise Party, by Tom Richards and Stan Tomandl. Ideas like these have gone out of fashion. So much is about ‘managing dementia’ and ‘managing difficult behaviours’. So much dementia 'treatment' is about crisis management. But maybe everyone can learn from people living with dementia; Maybe we have something to teach.

Here’s an extract from the CEO’s response, referring to a new animated film made by Alzheimer’s Research UK – which I’ve found the most chilling of all.

'There is a good reason it’s called "the long goodbye," and, as Alzheimer’s Research UK, says – there is no happy ending. Almost everyone who dies of dementia will do so with no understanding of what’s happening to them. They will lose their sense of self and independence.”

Why should we spend those years saying goodbye, instead of being with the person we love? Independence is highly valued in this individualistic society. I know people can find it devastating when their name is forgotten, but that might not be so critically important if attitudes to memory and the mind changed. And who is to say that a person in the later stages of dementia does not have a sense of self? They might not remember who you are, but they may well be aware of who they are and what is happening

These Alzheimer's organisations are doing important work, vital work. And of course cures are important, prevention is important. But we hear of possible cures in the papers years before they can possibly be used or afforded, and there’s almost a million people in the UK alone, right now, who are living with dementia. The numbers are only increasding. There’s a lot we can do right now, that costs very little. Give time to listen. Respect. Encourage. Empower. See the person living with dementia as a whole person, as who they’ve been, as who they are now, and maybe love them as they are.

***

In the first book I read in 2003 about dementia, The Forgetting by David Shenk, I remember the story of Ralph Waldo Emerson. He was a philosopher, poet and lecturer renowned through the United States. He died in 1882, before Alzheimer’s discoveries, and in later years he appears to have had what we might call dementia.

He was aware that his mind was affected, but he carried on lecturing publicly, and writing about his sense of where he was. He writes about his experience, and his daughter Ellen was a kind of interpreter, remembering for him what he had forgotten. Names went, of people and familiar objects. He went on writing, but there were spelling mistakes and missed words. He carried on lecturing for fifteen years, with Ellen at his side to remind him of what had gone missing. He was reading his thoughts from lectures written from before.

‘But he doesn’t seem to have been much bothered. “‘Things that go wrong at these lectures don’t disturb me, because everyone knows I am worn out and passed by; it is only my friends who come for friendship’s sake to have one last season with me.’” Later, before giving a lecture, he told Ellen: “A funny occasion it will be – a lecturer who has no idea what he is lecturing about.”’

Eventually he decided that old age permitted him to do nothing, and he enjoyed watching the children in his garden and sitting looking out of the windows. That reminds me of taking my aunt to a park where we watched children at tennis lessons, and to a garden centre where the range of colours and the families there engrossed her attention, months after she became less able to use speech.

Could we accept and include people with dementia? Consulting people living with dementia as Experts by Experience is making radical changes, as is Co-production. It’s important that we pay more than lip-service, to include people with dementia in every decision, every aspect of our lives.

None of us needs to be encouraged to perpetuate the myths surrounding dementia by the organisations formed to support the people involved. The fears, the terror even, that people feel around dementia hurt us all, damage us all. Let’s not use them to raise money. Charities’ fund-raising doesn’t have to build on those fears, the stigma, the misunderstandings.

Maybe we need to go even further, to stretch ourselves, to learn to listen to the body, to give the time it takes to discover the riches.

That could change everybody’s life.