The language of dementia

language_is_keyFollowing on from the last two blogs, it seems apparent the language of dementia is changing or evolving into one that is more acceptable to people with dementia. It may even be the key to a more person centred approach to care.

This surely springs from the fact that until recently, the language of dementia has been decided on by people without dementia. Not just family carers, but care providers, nurses and doctors, researchers and academics.

language

ˈlaŋgwɪdʒ

noun: language; plural noun: languages1.
  1. the method of human communication, either spoken or written, consisting of the use of words in a structured and conventional way.
    “a study of the way children learn language”
  2. a system of communication used by a particular country or community.
    “the book was translated into twenty-five languages”

People with dementia have not spoken up before, at least not in such large and united numbers.

Thanks for the most part to the internet, there is a groundswell of people with dementia,  speaking to each other, swapping stories and feelings about things like care and policies, and comparing each others countries to our own.

We are also comparing our lived experiences, and things such as the language being used to describe us or those who care for us. We have opinions, and feelings, and no longer is it acceptable for others to speak for us, or about us with out us.

People with dementia are now developing the language used for our own community, a language we feel is our own, not one selected for us by others.

We consider finding translators for people who speak another language, in all sorts of places including the health sector, is right to do, to ensure the persons own language is being used and respected.

The language of dementia is now developing, and this will ultimately ensure we are afforded respect… and a voice.

Others will need to learn our language.

There is no way we would call  an Aboriginal Australian by some of the terms used in the 50’s and 60’s, as they would be disrespectful and now very unsuitable.

We use the word ‘disabled’ rather than retarded, because people with disabilities started to speak up for themselves, and found the word retarded disrespectful… Even though the dictionary definition might suggest it is appropriate.

No longer is ‘demented’ or ‘a vacant dement’ as I read recently, an acceptable term for people with dementia.

First and foremost, we are people, with names, living with dementia. We have a diagnosis of a physical – not mental- terminal disease.

The word dementia comes from the Latin meaning madness, and so no wonder we struggle against the myths. Recently a politician justified calling me demented, because technically I am! However I find that term very offensive.

The term ‘Living with dementia’ is now being discussed robustly, by the very people it affects more deeply, that is, people diagnosed with dementia.

This is not to say our beloved carers should not be part of the conversation… It is obvious they are, and we quite rightly must respect them and their opinions. We love them, and appreciate their care and support, and in no way would those of us with dementia wish to insult or offend them.

However, it is time for people with dementia to develop their own boundaries for the language of dementia, a language where they feel fully respected and not marginalised or patronised.

The language of dementia, where their voice is being fully heard.

Thankfully, that time is now.

17 thoughts on “The language of dementia

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  3. I am unable to address this issue as eloquently as some of the previous comments but you are so right, Kate when you speak of the power of language. Steve says he is comfortable with the term “dementia sufferer” and I applaud him for that but for me the term has negative connotations. It implies capitulating to the power of the disease and taking on the mantra of victim. I prefer the term “living with dementia” as that suggests maintaining control over the condition, retaining an identity and not being defined by the disease.

    • The power of language is incredibly important, and relevant, to the way people with dementia are treated. I agree the term ‘sufferer’ has very negative connotations, and stigmatises us, but have no problem with Steve using it if he feels ok about it. the word victim does the same thing, IMHO!

  4. I have always loved words, but it was not until I started to develop care charts to help with care of those unable reliably to communicate their needs, and more particularly when I started following the debate(s) on Twitter about what is and what is not appropriate language, did I understand how much impact using the right or wrong word can have. I heard an example recently, in a hospital corridor, of how inappropriate words can strip away humanity in a matter of seconds. A carer called out that no.9 needed some attention. No.9? That was the room number of an individual, but what chance did they have of being treated like an individual, of receiving person-centred care, when they are referred to as a number?
    You make some excellent points, but are you sure you want your own language? That implies a potential for erecting barriers, when it might better for us all to work together and focus on eliminating the negative words and encourage a way of speaking that celebrates and respects each individual’s position.
    I hated being called a carer. I was a wife taking care of her husband, but I had to accept that the term ‘carer’ gave me certain rights (a flu jab, for example) and a particular status that didn’t require further explanation. Much as I hated it, therefore, the label was a necessary evil.
    You are forcing people to re-think things they had previously taken for granted. Please keep it up!

    • Hi there, thank you for swinging by and commenting. What a thoughtful reply… I had not thought of the potential barriers of ‘our own language’, and will think a lot about what you have said. My husband hates being called a carer too, he says he is my husband, and has always cared for me. He support me to manage the symptoms of dementia, enabling me rather than ‘caring ‘for’ me. I call him my BUB (Back up Brain!). Happy New Year.

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  6. Brilliant Kate – this has really got people thinking about the important issue of language. Just a couple of thoughts about language and difference: language and how it makes us think about people and act towards them has a practical impact on the way members of our community treat those of us who we see as being different. In the past, and now, much of the language that has been used to refer to people with disability or impairment, life limiting disease, indeed to those of us who have the good fortune to live long enough to be consider ‘old’, has been developed by clinicians. It can be argued that this medicalised approach has led to most of us thinking about the impairment or disease – the condition – before the person. It’s my belief that this sort of approach leads to a sense of treating people as ‘other’ or, ‘the others’ – us and them. I reckon that you can argue that this is at the heart of discrimination and helps create a sense – or reality – of fractured community. A more recent move has been to try to see the person first and then, perhaps if necessary, the condition. What I think we need to remember is that we are all part of a contiguous community – we all live here – we are all people and, as far as that goes, we all need to consider each other as people – not cases or conditions. In today’s thinking those of us who belong to an identifiable group have advocated for the right, capacity, ability, ‘permission’ to identify themselves, speak for themselves and promote the language that is used about them. I have a deep belief in the rightness of this. I also advocate for a language that embraces diversity for the valuable notion that it is – a notion that allows us to live together and learn from others – a language that sees diversity and difference as the norm – when you think about it, it is. How does this elucidate this conversation? While no individual in any identifiable group can be said to be the single voice of that group, it remains the right of that group as a community to have a voice to speak about how it is that the ‘rest of us’ speak about them – therein lies empowerment.

    • I totally agree with you Philip… and as you probably recognise, I feel more empowered now than when you first met me, in part due to self advocacy and advocacy of others, but in finding my voice, and trying to harness the voice of those others living with dementia. As always, thank you for your very considered thoughts.

  7. Frankly, the term “dementia” is unhelpful. When I was researching texts for my PhD, the search term “dementia” kept throwing up books of a particular genre “dementia” which have nothing to do with the illness but which comprises horror stories. Alternatives to dementia include “degeneration” which isn’t particularly helpful either. I remember the last time I had depression, my brother said that I had a tired brain, which was in a way true, as the pressure of studying was stressful enough to bring on symptoms of depression. I preferred the idea of “a tired brain” to “clinical depression”.

    So perhaps we need a global competition to find a new word (one which describes but doesn’t alienate/cause alarm) for dementia?

    • One of the considerations here are to call it ‘cognitive impairment’, and then ‘mild cognitive impairment’ for pre diagnosis, which may change your experience. Things certainly needs to change, but not necessarily the word!!!

  8. Good on you Kate – a very well thought out & clear message that should give all of us something to think about. On a personal note I have never described or spoken of myself as ‘a person living with dementia’, despite having cared for a family member diagnosed with Alzheimer’s Disease, and during my working life as a Dementia Consultant for many years. I have spoken often about the difficulties and emotional toll – for the person who has the diagnosis and for those of us in various caring roles. Often, sadly, the phrase ‘person centred care’ is bandied around without any real understanding. It sounds good, looks good on paper, but in my opinion, professional carers have little or no understanding of its meaning, and how it translates into good practice. Voices like yours will be heard and will make a difference. You have my support and admiration – keep well and strong.

  9. Hi Kate.
    I think you’ve hit the nail on the head in your title.
    The Language of Dementia.
    This describes the situation perfectly.
    So when I or my wife say we live with
    Dementia it is our language.
    It is was makes sense to us.
    This is how we speak and understand this disease.
    This is what works for us.
    I agree with one of the comments made by someone that said they were surprised this subject became such a hot topic.
    If we speak our language and you don’t like it then just realise this is how we talk.
    If you say my husband doesn’t live with dementia but I do then I understand that’s your language.
    We both get where each other are coming from.
    I think we need to stop being so precious. (I mean this in general not directed at anyone).
    There are so many people out there with all different types of disabilities and all those that I know just get on with it. As a dementia sufferer (my words and language) we shouldn’t think we should be entitled to anything more than everyone else.
    I have friends with Autism that have the same struggles as me.
    And that is not being accepted in the community. They don’t seem to get hung up on terminology.
    I don’t care and I refer to myself as a dementia sufferer. This makes sense to me. This is my language. Im not offended if people refer to me as a dementia sufferer.
    My battle is with this disease and with the lack of understanding of this disease in the community.
    We all have our own language.
    To me it should be as simple as that.

    • Thanks Steve… and it is wonderful you and Sonya are so connected and supportive of each other, and each other’s roles within the realms of Mr Dementia. I do think one day, some language used currently about people with dementia, may not be appropriate in the professional or public setting, in the same way Aboriginals can refer to each other as ‘Black fellas’, but quite rightly it is not ok if we do. The battle for us all is with the disease, but also the stigma, discrimination etc, and sometimes, language can con tribute negatively to our experience. It is a good topic for us all to be discussing, and thank you for your honesty and friendship… x

The only thing missing in this global conversation is YOUR voice... Thank you.

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