There has been an ongoing debate in the dementia community about language, now for many years, and even though there are ‘dementia language guidelines’, I have regularly been told by researchers, universities, service providers and others without dementia, “but we don’t have to use them, they are after all, only guidelines!” Family care partners often seem the most determined group to label us ‘sufferers’, because I believe, they are suffering seeing us live with and die from this ultimately very disabling disease. I have been in these debates regularly, and often start them, and as most people reading my writings by now, know I’d rather be disrespected by the label ‘retarded’ than the label ‘sufferer’; in fact, I personally find that far less offensive than being labelled a ‘sufferer’.
So, I continue my internal discussion about this topic, and have come up with a few internal questions related to people with dementia being labeled by others, consistently and often, as ‘sufferers’ of dementia:
- Should I even continue to resist being labeled a ‘sufferer of dementia’, when some of the time I do suffer?
- Does that particular label though, have too much weight, negativity and baggage?
- Is it a negative label rooted in fear?
- Is it the label given to people with dementia, by people without dementia, because that is how it is for them watching us deteriorate and die?
- Does it strip me of the power I need to deal with dementia in a positive and proactive way?
- Is it short-sighted and ignorant?
- Is it a stumbling block to allowing more people with dementia to become healing resources to the wider community?
- Does the label increase or even cause the stigma and discrimination?
- Is it fair for others to use the label ‘dementia sufferer’ in marketing and media campaigns, simply to raise awareness or money, or is this, in fact, doing us more harm?
- Does it simply suit the current post diagnostic pathway of Prescribed Disengagement®™, therefore supporting the system (but which is not fully supporting us to live with dementia, only to die from it)
- Do people without dementia have the right to label our experience at all?
- Do people with dementia actually have the right to say, being labeled that way, is disrespectful?
Thank you for this!
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My pleasure Elaine…
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Hi Kate We certainly do continue to challenge language we all suffer from a cold just & get on with it , we are not not victims to be one someone has to have attacked us.
, Crap just happens we would rather not have this condition. So get on living with this positively x
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And crap happens to everyone about all sorts of things, and they suffer from it, but as you rightly said, we don’t label them sufferers all the time… great point! xx
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I have had bilateral hip replacements. Should I be labelled the bionic man? Kate keep posing those questions: the challenges have to continue.
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Ok, happy to call you the Bionic Man… any day!
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I think we have right say what we think feel re this…no one gets to take that way from us. I know, for me pers, I was diagnosed so late into disease…because my providers found it too sad tell me. While I love my providers, I can no help thinking what I could have done with Aricept 4 years earlier. I appreciate your work on this. ❤
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Totally agree Faith – and quite frankly, not being diagnosed, when they knew you had dementia, is unethical, and a breach of your human rights… have you thought about suing them? I am jot joking either… if it had been cancer, would fit have been ok not to tell you????? NO xoxox
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In USA, stats are that only 40% of dementia patients are told diagnosis, whereas 95% cancer patients are told of.
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Ok, so it is definitely time someone sued someone!!! how disgraceful… it is also happening here, but I have no idea of the stats
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My brother refused to tell his wife for 6 months after her diagnosis that she had YOD, as he felt it would be to updating for her when in reality it was to upsetting for him. We were to tell her she had memory loss, what a relief it was to finally tell her the whole truth, sadly my SIL never really accepted her diagnosis and we were unable to have conversations of how she would like to live, care options for her & talk through all aspects of her illness. My SIL had very noticeable signs 3 to 4 years before diagnosis but again family refused to listen and stuck their head in the sand. It wasn’t until people in our small community started to notice significant changes in her & speak up that finally I was able to convince my brother to have her diagnosed. I have certainly felt that my SIL had a lot of her voice taken away from her in those early years ( mind you when I did mention to her in those early years that I suspected YOD, she to declined to acknowledge the possibility in any way shape or form)
I certainly don’t shy away from telling her now what is happening to her when she asks questions no matter how upsetting it is, I do follow up with lots of love and care, as I believe that my SIL has the right to know what is happening to her, even if it is only in that moment.
The reason I picked up on her YOD is that I have worked for 30 odd years with people living with dementia in aged care. Trust me that even though my gut feeling of my SIL had YOD it was still very painful to have her diagnosed with YOD & too have had to learn to live in the here & now with her & not let my mind get ahead of where she is with it. I guess basically as you say to acknowledge that my SIL is still very much here with us & hasn’t gone anywhere.
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hugs ❤ ❤ ❤
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Is true, diagnosis hits like brick in gut…even when you know, an even when you one went get tested. I have no answer for family denial…I face that my life too…an in my view, it represents a huge barrier my care…since peop who there help me, keep think I can do more than can. You have my heart an sympathy, what a wonderful person you be keep try help her. ❤
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Big hugs to you both ❤ ❤ ❤
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Thank you for asking these questions Kate. I would agree with Damian’s comment as well… It makes me reflect on how a person’s temporary experiences/emotions can be used by others to define them.
For those who cling to terms like ‘sufferer’ – would they think it is reasonable to be defined themselves by terms like ‘griever’ because they sometimes experience a very normal emotion related to their own experience of losing someone close, or ‘slacker’ because they sometimes experience fatigue and need to take a break from their passions in life?
From my perspective, it seems that extrapolating from a person’s temporary experience into a label of their identity is bound to be inaccurate and disrespectful.
Best wishes,
Craig
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Thanks for your valuable insights too Craig, helpful for me, and hopefully others as well 🙂
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thanks Kate. In answer to your questions without any hesitation or doubt (which makes them almost rhetorical!)
1.Yes
2.Yes
3. Yes
4. Yes
5. Yes
6. Yes
7. Yes
8.Yes
9. No, it’s not fair and Yes, it’s doing more harm
10. Yes
11. No
12. Yes
It’s good to question but PLEASE do not doubt. It is a great deal of your writing that has often dispelled a lot of the doubts I may have had in posing the odd challenging question along the way.
Best to you
Damian Murphy
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Thank you Damian… very helpful. xox
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