The language of dementia is slowly changing

There has been, for many years, discussions, requests, even what could be seen as begging from may of us diagnosed with dementia to use respectful language. That means, respectful from our point of view, not those who are not diagnosed with dementia.

Of course, people with dementia do suffer some of the time, but we did before dementia too, but were not then termed as sufferers all the time. Some individuals with dementia may wish to refer to themselves as sufferers, and of course, that is totally their right, but I believe it is not ok to do so publicly, as it infers that we are all ok with that negative label.

The following is my guest blog published by Dementia Australia after attending the Alzheimer’s Disease International (ADI) Conference in Puerto Rico in 2014

I repeat: “Please don’t call us sufferers”

During the recent ADI2014 conference, it was apparent the language being used by researchers and other presenters to refer to people with dementia is still very derogatory, stigmatising and discriminatory.

Now really, do any of these people look like they are suffering, or like they are victims? It looks more to me like we are meaningfully engaged, in the real world, and having fun. I know this to be true, because of course, I was there!

People with dementia are learning to live well with dementia, and one of the goals of Dementia Alliance International is to give a voice to, and to empower others with dementia, to live well to. We will publish articles on many of the issues we are facing, written by people with dementia, rather  than by those without dementia, who choose to write or speak “about us,without us”.

It is no longer appropriate for this to happen, and a brilliant blog written by one of our co-founders and Board members, John Sandblom yesterday speaks about this too. John wrote:

“We are just changing in ways the rest of you aren’t, we have increasing disabilities and the sooner it is looked at that way instead of the stigmas, misunderstandings and complete lies the better for all of us living with dementia. We desperately need others to enable us, not further disable us!”

I hope we reach our goals and dreams before we all die, but it is important to live as well as we can until then, and as Richard Taylor rightly says,

“we are going to die most likely because of dementia but guess what, all the rest of you are going to die too”.

Live every day as if it is your last, just in case it is…

I also often say;

“Being diagnosed with dementia is not as much fun as your birthday party, but there is no reason to die now”.

 

I thought it was worth adding one insightful and honest comment from Eleni Andreou to my post on the Dementia Australia site:

“I have been caring for my dad for 7 years now. If people with dementia in early stage prefer to be referred to as “people with dementia” we should respect their wishes because they deserve this from society as well as us, the caregivers. And if they have no preference we should still have the decency to refer to them as such.

Yes, my dad is suffering and so am I along with him, I cannot argue with that. But I will absolutely defend people in early stage dementia and absolutely respect their wishes or respect how I reference them because when my dad was diagnosed and still able to function normally it broke my heart that he was treated like he didn’t exist or his opinions didn’t matter and people in our lives began to disappear while his brain was 90% healthy. that’s just cruel and we need to erase that stigma. It’s up to us to do so, not them. I just don’t understand why my fellow caregivers have such a problem with this term and keep up an argument about it (just yesterday it was a big debate in one of the online support groups).

Honestly, I am very upset that we as caregivers insist on this stigma for people with dementia who are in early stage. They are not dead yet, they have been diagnosed and doing the best they can to hold on to what they can and live the best they can while they can and they, along with our help can still enjoy life, we should respect that – it’s the least we could do really, before the journey starts getting rough for everyone. We are all exhausted, drained, and our lives have been erased as well but still, I just don’t get it.

Finally, if I am ever diagnosed with dementia I, too, would certainly appreciate to be referred to as “a person with dementia” rather than being reminded of my struggles and of the disaster that is to come with the term “sufferer’. Strength and courage to all.”

My guest blog was originally published here on 9 May 2014, and although we’ve been asking for change, we still too often find someone from within an advocacy organisation still refer to us as sufferers, or academics and health care professionals still using offensive terms such as demented or dementing illness.

But change is happening, albeit for some of us, still too slowly!

16 thoughts on “The language of dementia is slowly changing

  1. Another ditto Kate-so agree with what you have said. Yes, we do all have our struggles from time to time in life because of illness(not just Dementia but other illnesses too), stress, operations which are major and are stressful, bad time at work, changing school, moving out of homes etc and more… I love those quotes and i hate how people are called “Dementia sufferers”and if we dont die of Dementia we die of something-everyone does… I like that quote “being diagnosed with Dementia is not like a birthday party, but there is no reason to die now”-it reminds me the importance of living life to the fullest and achieveing all the things you want to achieve. What Eleni said is so insightful and so true-never argue with them-just move on as they are only angry because of there Dementia not by fault. You can still live a full life with Dementia and be happy-despite ill health-my Grandad is in lalla land but is very happy so we are blessed about that. Some caregivers are completely useless to some Dementia suffers-i read an article in the Nz Herald and one 86 year old man who has Lewy Body Dementia got beaten up by a caregiver-i felt sadness and sorrow whilst reading that and was absolutely mortified, disgusted, and shocked-i couldn’t believe that happend and didn’t realise that caregivers were sooo bad. Most caregivers are harmless but there are one or two who are harmful. That particular family, moved there elderly father into there home as they thought the rest home wasn’t a safe enviroment-if that was me, i would do that too. Have a wonderful day tommorow Kate-enjoy and relax!Best wishes:)

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  2. Agree in every way Kate my friend –
    Subjective terminology such as assuming a person “suffers” or “loses oneself” or is a “victim” or “afflicted” are terms that are demeaning & derogatory, immediately providing a dehumanising attitude based on “our” personal views.
    These invalidating terms do not actually reflect the often positive, and wonderful lifestyle that can be attained by a person living with dementia and their families.
    I am not negating that living with dementia must be formidable and often confronting. People living with dementia are courageous and inspiring in their fortitude.
    What I believe is, it is we who are the catalysts to creating the stigma attached to this condition, and the fault lays with us for generating this attitude.
    Just because living with dementia is viewed as ‘different’ to what we “expect” at this time of life, does not mean we should assume or conclude it is wrong, or to be feared, must cause despair, core suffering or sadness.
    This is a destructive and harmful myth fostered by constant reinforcement by the media, and/or those that have only received inadequate information. It has unfortunately bred a continuation of ignorance, misunderstanding and misrepresentation throughout most of humanity. Thus fear is born.
    Hence I again reinforce that these attitudes are frequently the impetus in creating inaccurate perceptions about dementia and those that live with dementia, therefore instilling the harrowing terror & pessimistic mindset, that we then, at times prejudicially pass on to those we care for.
    Thus if we look at this logically, it is we, as cognitive individuals that create the suffering. Shame on us.
    L.xx

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  3. Merry Christmas to you & your family, I look forward to reading your posts in the new year,
    God Bless,
    Rhonda Campbell.

    Sent from my iPad

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  4. Hi Kate, I haven’t posted for a long time but still love to listen to what you have to say. As a nurse who cared for people living with Dementia for over 15 years i left the place of my employment over 2 years ago to work in the hospital system. The reason being I became disillusioned with the money making machine and not person centered care. I became frustrated with the language used by the staff towards the residents, eg, speaking down to them like children or playing children’s dvd’s instead of age appropriate material. No matter how much education i provided, the staff still continued on with the incorrect language whether it be music, movies or communication. Why couldn’t they go on the bus trips or the shopping days? Lots of why’s so I left because I could not get my voice heard and could not give the care and respect i wanted to give everyone on my own. Thank you for listening, Cath.

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    • Hi Cathie, thank you for sharing. I’m so sorry to read you gave up working in dementia. It’s a tragedy the system is so broken you couldn’t impact change. I feel your frustration, and love that you’re still chatting here. Hugs xxx

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