Alzheimer’s Australia’s guide
Alzheimer’s Australia has produced their own guidance notes on language. These can be viewed here.
Letter to The Times
“Last week I signed up to a Call to Action entitled Dementia Words Matter, a campaign to “check, change and challenge” the words used to describe people with dementia. This initiative is launched jointly by members of DEEP (The Dementia Engagement and Empowerment Project) and the National Dementia Action Alliance. It seeks to “challenge extreme and sensationalist language used in the media to talk about dementia”: words like dementia sufferer, demented, senile, burden, victim, epidemic, living death. On Saturday, The Times headline read “New hope for Alzheimer’s sufferers in pioneering drug.” As one person with dementia put it: “Words are very powerful – they can build you up or put you down”. People with dementia seek to live with the condition as well and as fully as possible, and being engulfed in negative images does not help. This is not about political correctness; it is about changing perceptions and recognising that those who have dementia are people, first and foremost, and that dementia does not define them. So, how about “New hope for people with Alzheimer’s in pioneering drug”?”
Housing Learning and Improvement Network
Training session on language
“I was interested to read your article about the power of words and dementia. I am a director of a care home charity and we provide care for people living with dementia and also with physical disabilities. I have recently introduced an induction and training session called The Language of Care which I have written in response to my frustration at the negative and controlling language used, often with no negative intent, but without thinking about the words being used. For example, in hospitals and care homes why do staff ‘feed’ people and why do adults sleep with ‘cot sides’ and ‘bumpers’!
There is a lot of work to do on the language of care.
Thank you for sharing and drawing attention to this important topic”.
The Royal Star & Garter Homes
Work from other countries
“I wanted your group to be aware that we have created person centred language guidelines (in English and French) which you might be glad to know of and to read”.
Mary E. Schulz
Alzheimer Society of Canada
On our radar: dementia diaries
Dementia Diaries is a national series of audio diaries that document the day-to-day lives of people living with dementia. By sharing their experiences they hope to prompt dialogue and promote understanding.
Free session – Dementia Friends & Positive Language – London
Dementia Pathfinders organised a one and a half hour session based on the national ‘Dementia Friends’ initiative. The aim was to understand that dementia is much more than just memory loss and not a normal part of ageing. The session provided insight into what it may feel like to live with dementia, to consider the principles of person-centred approaches and to discuss the impact of the language used (positive and negative) when referring to dementia care.
Pippa Kelly’s blog
“I write every day about one thing or another, mostly about the elderly, their care and its funding, and about dementia, which stole my mum from her family in a drawn-out 10-year raid. My articles have appeared in numerous national newspapers”.
Rachael Wonderlin’s blog for Alzheimer’s Reading Room
The goal of the Alzheimer’s Reading Room is to Educate and Empower Alzheimer’s caregivers, their families, and the entire Alzheimer’s community.
Creating life with words: Inspiration, love and truth
Kate Swaffer writes a blog on living better with dementia.
YoungDementia UK’s guide for journalists
“The media frequently portrays people with dementia in a stereotypical fashion. Use of language such as ‘sufferer’, ‘patient’ and ‘victim’ is all too common, which intensifies the stigma of those with dementia.
We have compiled some facts and figures for journalists and those with an interest in young onset dementia. We have also included guidance around what YDUK considers to be acceptable terminology and preferred language when writing about young people with dementia. We hope you will find it informative and useful”.
Positive example of a local press article
Yorkshire Post published an article about helping those living with dementia.
Beth Britton is a campaigner and consultant, writer and blogger. Her dad had vascular dementia for approximately the last 19 years of his life. Beth aims to provide support and advice to those faced with similar situations, inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.
Email from Clinical Psychologist
So often I note the word ‘demented’ as not appropriate for use when I am doing training for our NHS trust on post-diagnostic support – you would be surprised at the people who still use it (including our Consultant Psychiatrist, I am embarrassed to say).
Commentary from a person with dementia
Read J.M.Saints’ commentary about words used surrounding dementia.
New research by Age UK and the British Geriatrics Society
The report, ‘Frailty: Language and Perceptions’ by leading research agency BritainThinks, commissioned by Age UK and the British Geriatrics Society reveals that older people prefer to describe their needs in more straightforward terms: they see themselves as starting to struggle with things, or being worried about their health, but not specifically as ‘frail’. The biggest priority for the older people interviewed was staying independent, but they often saw ‘frailty’ as an irreversible state, entered into at the very end of life and associated with severe physical and mental limitations. This contrasts starkly with the clinical concept of frailty as understood by medical specialists, which is a condition which needs to be identified and diagnosed so that it may be managed with appropriate support. Medics point out that some symptoms of frailty may be reversible. Specialists such as geriatricians are thus aiming to spread understanding of frailty among the wider community of health care professionals.
Read the full report.
Read what Caroline Abrahams, Charity Director at Age UK said.
What else did the Call to Action do?
- The secretariat of the NDAA will checked through the Action Plans of all member organisations and requested changes where they found words that people with dementia have asked us all to be avoided. They will also make new members aware of the Call to Action and suggest they include it in their action plans
- Awareness raising materials were published and disseminated, to promote the issue of language around dementia
- Tips and templates are available to help people to take action when they encounter inappropriate language
- A roundtable discussion was organised with journalists and press officers to identify barriers to changing the language
- We will continue to show examples of actions taken to challenge language (e.g. Tweets, letters to the editor, videos, blogs etc) on this webpage
- A final document will be produced about language and dementia at the end of the Call to Action, aimed at journalists and press officers