How we talk about dementia, and people with dementia, is a thorny issue. It is easy to be accused of being politically correct, or losing sight of the real issues by getting hung up on the language we use to describe them, but whilst I would be the first to admit that there is a fine line between being respectful and pedantic, looking at the way we talk about dementia and people with dementia is important to shaping viewpoints, breaking down stigma and improving dementia care.
That doesn’t mean that I think we should go as far as renaming dementia (see this post on NCD). After all, increased awareness and support for people with cancer didn’t happen because we changed the name, it happened because we changed attitudes and educated society. Dementia is now slowly seeping into the public consciousness, and I don’t think the word itself is a barrier to progress and positivity, but some of the terms associated with dementia are helping to keep the disease in the dark ages.
A snapshot of some of my main bugbears and the reasons I don’t like them are listed below, along with some alternative suggestions. Sadly, all of words I have highlighted here are still regularly used across society, by everyone from media organisations to professionals in health and social care, and even families of people with dementia who don’t understand the disease. Interestingly though, if you read the work of people who are living with dementia and documenting their journey, you won’t see them choosing these descriptions for themselves. Food for thought I think!
Senile is a grossly outdated word that should be abolished from our language.
No one with any ounce of modern thinking uses the term ‘senile dementia’ anymore. It is exceptionally negative, implies that the person is worthless, without any quality of life and unable to make any contribution to society. If anyone had described my father as being senile at any stage of his dementia I would have been outraged.
Senile is also a very age-related term, therefore reinforcing the misconception that dementia is a disease of old age, when it can affect people of all ages, even children, although those cases are rare.
Attach the word ‘senile’ to dementia and it becomes hugely stigmatising, negative and totally inappropriate for the modern understanding of dementia and the care people with it should be receiving. Thankfully, the widespread use of ‘senile’ has been eradicated, and in my opinion any references to it now are archaic.
Service user is a common term in social care, even though turning care into a ‘service’ and a person into a ‘user’ is a concept very far removed from what most families would want for their loved one.
We were completely against this description in relation to my father since it implied a production line approach to running a care home. An establishment where numerous people from different backgrounds live and work together, hopefully in relative harmony, is surely a community, therefore the model of referring to everyone within that building as ‘community members’ brings a sense of warmth, belonging and engenders respect and dignity. A great example of this is the Healthy Living Club @ Lingham Court. People with dementia, their carers and friends are members in this self-directed community group – a refreshing approach that many organisations could learn from.
Client is another widely used word to describe people living in a care home, receiving care in their own home, or taking part in activities run by day centres or community groups.
However, for me it is associated with a transaction approach. You pay money and receive something in return; a bit like visiting a solicitor. Whilst technically this is what happens in many cases, it does nothing to reflect the need for personalisation or compassion that is so vital in dementia care. Again, for ‘client’ how about ‘member’ – it implies teamwork, puts those giving and receiving care on the same level and underpins the need to understand each other.
Toileting is another term that I loathe.
People with dementia should be assisted to use toilet facilities if they need help, but not have such an important aspect of daily life made to sound like a regimented and degrading system. As an example of how strongly I feel about this term, when we were looking for a care home for my father we visited one where the nurse in charge openly told us that they had ‘Toileting Times’ (as I wrote about here). Needless to say dad never set foot in that home, and any other care home adopting such an approach should radically rethink – how would their staff feel if they were ‘toileted’?
Sufferers is a term that has long been used in relation to people with dementia, it appears regularly across the media and infuriates many, myself included, who are campaigning for a better understanding of dementia.
Amongst those who dislike this term the most are people who are living with dementia and sharing their story to help the world understand that they are not looking for sympathy or pity – something that the term ‘sufferer’ implies. They want to be seen as a person in their own right, not as a disease.
I’m all in favour of the drive to bring positivity to dementia care, provide hope and break down stigma. Describing people as ‘living with dementia’ rather than ‘suffering from dementia’ is designed to enforce the point that you can live well with dementia. That is not to imply that there aren’t huge challenges – I would be the first to admit that my father often suffered greatly as a result of his dementia, and indeed the other illnesses that eventually went with it, like pneumonia, UTI’s etc.
However, over the course of his journey with dementia, dad still had far more good days than bad ones. Days when we smiled, laughed, sang, ate and explored the simple things in life together. Days of complete silence and yet pure serenity and calm. Days of endless chatter that either of us really understood but didn’t need to because we had each other’s company.
In all of those moments, my dad was living with dementia and we were living with him, making the best of things and not thinking about suffering. The pleasure we had in each other’s company is something I will always miss.
Until next time…