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.
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!