How is dementia portrayed in the media? In newspapers, films, newspapers, and social media?
I know from my own work that some journalists and organisations do try hard to use positive language and images. They ask us, the people living with dementia, and the organisations with expert knowledge, how they should portray living with dementia. They might try to sensationalise, but they do ask us to edit their copy, to change what we don’t like.
But journalists and media publishers primarily want to sell their product. They want to catch our eye. So sometimes they use language which makes you react, makes you keep reading (or watching) so you stay long enough to see the advertisements.
If their intention is to inform (and that is a big if) they often miss their target.
They use simple, colourful language because they want to avoid ambiguity and subtlety. They don’t really want you to think. They just think they have to make it as easy as possible for us, the poor uneducated readers.
How patronising can you get?
Have a look at these images? ….
Look at these screenshots and decide for yourself how they make you feel about dementia?
What is your gut response?
How would you feel, do you think, if tomorrow you were given a diagnosis of dementia?
What would you think about your future?
There are of course wonderful exceptions in the media.
Channel 4 and the BBC and other organisations do of course work hard to present a non stereotypical model of dementia. And The broadsheets may try to be less sensational or hysterical too.
But the use of stock images in newspapers and magazines is usually dire. (Show pictures) many of these are from one agency. Why were they chosen?
In my experience charities try to use real photographs of real service users. Though I remember when I worked with the British Red Cross we saw the same people in leaflet after leaflet.
Now and then even the Guardian gets it wrong. (Show screenshots of Polly Toynbee article)
This piece really annoyed some of us. Just look at what Polly Toynbee wrote. “Let us do ourselves in. We are out of our minds.”
I wrote a rather offended blog response to it, which attracted a lot of support.
So why does this all matter?
Why do language and images matter?
The people I work with around the country, who live with dementia…we LIVE with dementia.
We don’t let Dementia stop us from living.
Dementia does not define us.
Words and pictures are how we understand abstract things, like feelings, and hopes, and fears. If you only ever see these stock photos of people sitting vacant in an armchair, or gripping their forehead in apparent pain, what will you think dementia is like?
If you only read or hear of people suffering with dementia, this cruel, horrific disease that makes people burdens on their family and society? What will you think?
I am me, just as I was before my diagnosis four years ago. The same things give me pleasure. I still breathe, and feel, and think. I can still stand up here and talk to you. I garden. I walk my dog. I use my ipad and iphone.
When I was diagnosed, the community sister from the memory service told me to be careful now, not to take risks, to avoid getting tired…to do less.
Why? Why would this do anyone any good?
Yes, the brain disease that I have will one day probably disable me. And indeed, I do consider myself to have a disability. For legal purposes only. I have rights. Disability rights, equality rights, and human rights.
But I continue to live as I choose.
I have learned how to work around the difficulties I have. As we all do.
We all have good days and bad days. Bad hours even.
And what you see and hear now, today, is different from me at home on a bad day, or resting in the evening.
A diagnosis of Dementia is not death. It is not the end of life. Although it is progressive and terminal.
It is usually given after several years of symptoms. Brain disease, like any disease, starts on a day, and develops, and eventually you notice. Brain disease will be present in your brain for up to twenty years before you really notice the symptoms. And people deteriorate at different rates.
So that day when you sit with a doctor and a memory service nurse to be told you have dementia, the last thing you need is to be told your life is effectively at an end.
Doctors have for centuries use the word demented to describe their patients.
“suffering from dementia.”
behaving irrationally due to anger, distress, or excitement.”she was demented with worry”
In the last two centuries people whose brains were diseased have been locked up, away from public life, in asylums, or mental hospitals. In cells, or huge bunkbed dormitories. They were described as lunatic, deranged, unhinged, demented, mad.
The medical establishment still sometimes refers to patients as demented, or dementing, as a medical description.
Other words commonly used include suffering from dementia, cursed by the dreadful disease, a burden on their family and society, round the bend, out of their mind…Our behaviour (in later stage dementia) is often said to be “challenging”. And we have for decades been restrained with bandages and manacles, and chemicals.
The current legislation going through parliament about deprivation of liberty refers to people “of unsound mind”. That is intended to be new definition of a person who can be deprived of their liberty. Is that really where we are now? Going back to Victorian judgements.
These descriptions simply betray a lack of understanding…and a lack of compassion. They hark back to former times when eccentric or wild behaviours were seen as evidence of madness. They describe a model of living which is intolerant of difference. And these words perpetuate the stereotype they describe.
The description we choose is living with dementia, or affected by dementia.
There is a model of wellbeing which includes the concept of living well. So, Alzheimers Society, the government, and others, will say it is possible to live well with dementia.
Yes of course it is, but none of us actually lives well every day, every hour, so I prefer the term living as I choose, as well as I can. This model allows me to make choices from time to time that are unhealthy, or risky, or just plain indulgent. It allows me to choose what matters to me. What makes me smile, and want to get up in the morning. That is wellbeing.
So I am not suffering from dementia. I am living with dementia. I may suffer from time to time, as we all do, whether it is self imposed or not.
I am not a victim of dementia. I have not lost my mind. I am not unhinged.
But I may sometime in the future be in a different world from you, when I can no longer make sense of what I see and hear.
Nor am I a burden, if this is a compassionate society. I am just a person living with a brain disease who will need some support to be able to live my life.
If you see behaviour as challenging and eccentric, it is not because I am challenging you. It is because you do not understand what is causing it, and I cannot explain it to you. That is your challenge, not mine.
Please, We want a positive image of living with dementia. And each one of you can help us achieve this by playing your part and challenging negative, stereotyped portrayals of people living with dementia.