Philly Hare leads the Joseph Rowntree Foundation’s major research and demonstration programme Dementia without Walls, which supports the collective voice of people with dementia through a growing national network of influencing groups. Philly has worked in the NHS, in local authorities and in the third sector, and holds an MSc in Applied Social Studies from the University of Oxford. She is currently a member of the Prime Minister’s Dementia Challenge Champions Group and tweets from @philly_hare
“Words are very powerful – they can build you up or put you down. When you are speaking about dementia remember this.”
This message comes from Agnes Houston, a former practice manager who is now living with dementia and is Vice-Chair of the European Working Group of People with Dementia. It is endorsed by many other people with dementia and their groups, as well as by key research such as the World Alzheimer Report 2012: Overcoming the stigma of dementia.
The use of negative and sensationalist language and images in describing dementia is still widespread. ‘Tsunami’, ‘time bomb’, and ‘crisis’, are common in media headlines, and military terminology, such as ‘onslaught’ and ‘battle’, are often used, even by dementia advocates and charities. Individuals are described as dementia ‘victims’, ‘patients’, ‘sufferers’ or even ‘cases’; as ‘dementing’, ‘fading away’ or in a ‘living death’; and as a ‘burden’ to family and society. Images of helpless people hiding their heads in their hands or cowering in a corner frequently accompany media articles, web pages or reports.
Yet this kind of representation is known to be harmful – it reinforces negative attitudes, bringing fear of old age to all of us, and has a very direct impact on people with dementia themselves through internalisation. This causes denial and reluctance to seek help – which leads to later diagnosis and poorer outcomes, social exclusion and isolation… and can result in hopelessness, frustration, poor self-esteem and depression. Dehumanising the individual can also lead to poor care, and to lack of support for carer and family.
At recent events organised by the UK wide DEEP network, people with dementia called for words that are more accurate, balanced and respectful. They also identified some ‘curl up and die words’ including ‘demented’, ‘sufferer’, ‘senile’ and ‘living death’. These words, that are negatively attached to the person rather than the condition, make people physically flinch when they hear them and create inaccurate stereotypes.
This is not a question of nit-picky semantics or political correctness. In her recent blog, former young carer Beth Britton points out: “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… Our use of language is one really quick and easy way to help make a positive contribution.”
Medics have a very specific role here. They may particularly wish to reassess their use of the term ‘dementia patient’ or, worse, ‘dementia case’. In a health setting the former at least may, arguably, be appropriate, but if used generically to refer to all people who are living with dementia, these words trap them into a passive, medically-defined box which ignores their many other roles. If a doctor tells a person at diagnosis that they are ‘suffering’ from dementia, that sends an instant message of despair. Think how different is the message conveyed in the words “You have dementia, but it is possible to live well with it.”
DEEP recognises that it is going to take collective action to fundamentally change the choice of words that are used to describe dementia and its day to day experiences. Through the national Dementia Action Alliance, they have launched a Call to Action, asking others to join them to address the use of language associated with dementia, and commit to the three ‘C’s:
- Check words and descriptions used in your printed materials against the DEEP Guide
- Change any words and descriptions that people with dementia have identified as ones to avoid
- Challenge words which you recognise as our ‘curl up and die’ words whenever you see or hear them – in newspapers, on TV, on websites and in conferences and meetings. And pass on the challenge to others to take forward in their own settings.
This week is Dementia Awareness Week. We 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.
Follow the conversation around Dementia Awareness Week on Twitter: #dementiaawarenessweek / #DAW2015
When I look back, I think Geoff had been showing signs of dementia for at least eight years before his diagnosis, and it was only a matter of months after he was finally told that he had what was probably a mix of Alzheimer’s Disease and Lewy Bodies, that his condition took a turn for the worse. I had to admit defeat and he moved first to a dementia assessment ward and, three months later, to a care home for what turned out to be the final 13 months of his life. Continue reading 
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