As this year’s Dementia Awareness Week rapidly approaches (17-23 May), I anticipate that there will be a surge in coverage related to dementia in the UK. Indeed, it was the start of Dementia Awareness Week in May 2012 that saw me begin D4Dementia, so I know only too well how inspiring this focused week of awareness raising can be.
In amongst everything that’s written during this forthcoming high-profile seven days for dementia, I hope that the values of the ‘Dementia Words Matter’ Call to Action will be at the forefront of writer’s minds. It’s a Call to Action that I signed up to on the day it was launched – 20 March – and something that I am hugely supportive of.
‘Dementia Words Matter’ sign up board on launch day
The aim of ‘Dementia Words Matter’ is to ask anyone writing, reading or talking about dementia to Check, Change and Challenge the language being used to describe dementia. Signatories are being asked to use words that are accurate, balanced and respectful rather than extreme and sensationalist. In practice this means abandoning phrases like ‘sufferer’, ‘burden’, ‘demented’, ‘senile’, ‘victim’, ‘plague’ and ‘living death’ in favour of ‘person/people with dementia’, ‘person/people living with dementia’ and ‘person/people living well with dementia’. The misrepresentation of the word ‘dementia’ is also mentioned, as is the use of terms like ‘dementia patient’ and ‘service user’, and there is a request to consider using appropriate accompanying images rather than the usual generic pictures that often convey a very negative message.
The Call to Action is being led by the Dementia Action Alliance, of which I am a national member, and DEEP (Dementia Engagement and Empowerment Project). DEEP is a fantastic project that brings together people who are living with dementia to help ensure that their voice is heard at local and national levels, and it is the DEEP ‘Dementia Words Matter’ guide that has inspired this Call to Action.
One of the posters created to support the ‘Dementia Words Matter’ Call to Action
I recognise that to many people this may seem like simple semantics – I’ve heard individuals question why such campaigns even matter – but I have long championed the need to use language as a tool to help change attitudes, writing in March 2013 about my ‘Trouble with the language’. As the ‘Dementia Words Matter’ literature points out;
“The language we use to talk about dementia influences how people with dementia are viewed and also how we feel about ourselves”.
If people with dementia didn’t find words like ‘sufferer’ or ‘burden’ offensive this wouldn’t be an issue, but many – not all – clearly do, and this is an incredibly easy change we can all make in how we write and talk about dementia. I also think there is a point around improving the lived experience for people with dementia – many ways of doing this are complex and time consuming, but our use of language is one really quick and easy way to help make a positive contribution.
Over the last couple of years I have seen an improved awareness of the language being used to describe dementia, people living with dementia and different aspects of the symptoms and progression of dementia, but there are still far too many examples, particularly in the national press, of words being used more for their headline-grabbing value than their descriptive power.
As ever, there are issues around individual viewpoints that cloud these arguments. Many carers observing their loved one with dementia would instantly say that their loved one is suffering, although the alternative argument is that the carer perhaps misinterprets the suffering they feel as the suffering of their loved one. Some people with dementia feel that using the phrase ‘dementia sufferer’ is a fair reflection of how they experience life, but others argue that it isn’t the dementia itself that a person sufferers with but other conditions that become more prevalent as dementia progresses – common infections like pneumonia and UTI’s being a classic example.
Thinking back over my dad’s experiences, we never had a conversation about language. In the main my feeling is that he lived with dementia, and generally lived quite well, but he suffered when he became ill with infections, when he developed pressure sores, when he lost his mobility and eventually became confided to bed. I think in any of those situations anyone might feel they were suffering.
Overall though I didn’t view him as a ‘dementia sufferer’, in fact given everything he had to cope with over the years he was astonishingly upbeat, with a classic English ‘stiff upper lip’ and an amazing ability to take what was thrown at him by his body and have great serenity and grace. To me, terming him a ‘dementia sufferer’ would almost undermine those qualities that he showed day in, day out until the end of his life. It is a phrase that speaks more of his deficiencies than everything he overcame even when the odds were stacked against him.
Another poster created to support the ‘Dementia Words Matter’ Call to Action
Ultimately though, whether you agree with me or not, if some simple changes in language help to empower people currently living with dementia while breaking down the stigma and negativity that often prevent people who have symptoms that could be related to dementia seeking medical help, then that can only be a good thing. Those kind of positive changes go to the heart of what Dementia Awareness Week is all about.
Of course no change in language, regardless of how carefully thought out it is, and no matter who is fronting the campaign for the use of particular words , will ever please everyone or reflect every experience but for the forthcoming Dementia Awareness Week, and beyond, I hope that you and your organisation will consider signing up to the ‘Dementia Words Matter’ Call to Action, and most importantly of all, embedding the principles requested of signatories.
Until next time…