What does the word ‘Dementia ‘make you think of? Not in terms of people living with the condition, but the meaning of the word itself.

The term ‘dementia’ derives from the Latin root ‘demens’ meaning ‘being out of one’s mind’. So, before we even start to look at the use of language around dementia, we are on the backfoot already in terms of the negative connotations and origins of the term itself.

Little wonder then that there appears to be a real reluctance amongst people to seek out support or engage with services aimed at supporting those with dementia. The everyday language we use to describe dementia shapes our perceptions of brain ageing and even contributes to what has been called the “social death” of those most severely affected. 

 

All Is Not Lost Is It?

It is not just an issue with the meaning of the word ‘dementia ‘itself, there is so much negativity surrounding the condition or the public perception of the condition that the use of language surrounding dementia tends to encompass that negativity.

When my nana started experienced symptoms of memory loss, she would often say to me ‘I am losing my mind aren’t I?’ or another frequent comment was ‘I think I am losing my marbles’.

Loss is a frequent and recurring theme in the language of dementia. When the language of dementia focuses on all the aspects of one’s life that have ebbed away or that have been eroded, it is little wonder that the overwhelming feelings associated with the word are ones of negativity.

There is no doubt that there must be an acknowledgement of that aspect of dementia. To deny the existence of loss would be to somehow attempt to gloss over some of the most unsettling and upsetting aspects of the condition for those living with dementia and for those caring for them.

We often talk about losing the person we love to dementia whilst they are still alive - the term living grief is used to describe the experience of grieving someone who is still living, as if they are somehow lost as a person to us, due to their symptoms. That is perhaps an inaccurate description, as in fact their personhood is still intact, it is merely the memory of us that may be lost to them. 

There is an argument that instead of focusing on what is lost and what is missing to focus on what remains and what abilities are still retained. Why is it so important that someone we love, remembers what they ate for breakfast, or remembers who the prime minster is or where they put their slippers? To some extent, especially in the early to moderate stages of dementia, there is an argument that it would be hugely beneficial to everyone involved, from the person with dementia to the family if they changed the narrative.

When my nana was in the later stages of dementia and she at times, no longer recognised me, I had taken her shopping one day and popped back to my car to pick some more bags up. When I returned, she said to me - ‘Oh the nicest lady (that was me) took me shopping and she helped me in here and put the kettle on   - Oh we have had a lovely time!’ I could have viewed that as another loss – her loss of recognition of me, instead I framed it in terms of the fact that she had spent a lovely afternoon with a kind lady and that had brought her pleasure.

Karl Albrecht said ‘Change your language and you change your thoughts’

Speak Up, Speak Out...

Whilst there is no doubt that dementia can be a difficult diagnosis to come to terms with, it is unhelpful for all concerned if the language used surrounding the diagnosis is provocative and negative – victim, sufferer, burden, battle, loss are all words frequently used with perhaps little thought to the consequences of framing discussions using this language.

Thankfully, there are examples of organisations actively promoting the use of person-centred language. The Alzheimer’s Society of Canada talks about shaping the language of dementia around the human rights principles and has provided useful person-centred language guidelines Person-centred-language-guidelines_Alzheimer-Society.pdf

The Alzheimer’s Society in the Uk has produced a guide to using positive language around Dementia Positive language guide_0.pdf (alzheimers.org.uk)

The Alzheimer’s Society of Australia stresses the importance of using language that focuses on the abilities (not deficits) of people living with dementia to help people stay positively and meaningfully engaged and retain feelings of self-worth. They too have produced a helpful set of guidelines.About Dementia 1 - What is Dementia

Perhaps one of the most useful set of guidelines are those provided by the DEEP (Dementia Engagement Empowerment Project) entitled ‘Dementia words matter’. The guide was produced by twenty people who are living with dementia. They acknowledge that often the words used to describe dementia can be evocative to capture attention, such as when used by media. The group highlighted however that people with dementia prefer words and descriptions that are accurate, balanced and respectful.DEEP-Guide-Language.pdf (dementiavoices.org.uk)

So let all of us play our part, by speaking up and speaking out …. and maybe in time we can turn the tide and reframe the narrative for those affected by dementia too.