Who’s ‘Living with dementia was the title of my blog poem yesterday, and the last 24 hours has seen various conversations about this topic, one I had a reasonably strong opinion about.
As always, the direction you are taking, does not mean it is the right way, or the wrong way. It is simply your way, your choice.
Some people have agreed vehemently with my opinion about the use (or mis-use) of the term ‘Living with dementia’ and others have disagreed just as strongly, while others have sought to question further, to look at themselves differently, or to question me. I too have sought to look at this topic through others’ eyes, to see it differently and from as many sides of the same coin as humanly possible.
Perhaps I have lost some insight? That is something I cannot be sure of, but I can say, that so far those people who have agreed with me have all (bar three), been diagnosed with dementia, rather than being carers of someone they love with dementia.
(apologies I cannot work out how to embed the tweets)
@GeorgeJulian: Really interesting, is it the language (or actions) you object to?
@KateSwaffer: I think it is the inference by many they are living with it … literally.
@GeorgeJulian: ps Sorry for all the questions, just keen to understand more about your experience
@legalaware: Fab as usual by Kate.
@AlwayEFL: I agree absolutely re the negative language but wholly disagree with view re living with dementia – and don’t u/s your fury.
DB: Kate I just started reading your blog and want to thank you for speaking so well for us.
JS: The author of the article published a book about her experience with a parent with Alzheimer’s. It is ALWAYS caregivers that think they know everything about the disease.
and via Facebook from one person without a diagnosis of dementia:
SR: You’ve made exactly my point in your poem in fact.
RT: Hello, as usual our two minds are as one! Folks aren’t accustomed to us simply speaking up for ourselves, and they are not only surprised but many times irritated.
SB: I do not think caregivers should be allowed to say they are living with Dementia. Because in fact they are not. They are dealing with a person affected with Dementia. I may be wrong in my thinking, but when did care giving become an active role of having the disease.
and from one carer via email:
LB: Living with dementia in my opinion should only apply to people with a diagnosis. I’ve used “living with the challenges of dementia” to attempt to include caregivers etc.
These have led to longer conversations via the response section of the blog yesterday, providing so much food for thought. One comment that came through today from a friend Philip who works in the aged care sector included this:
“So, I must agree; if you don’t have it, you’re not ‘living with it’; you are living another experience. To suggest something else is to detract from the voice of the person who has dementia and distract from the message they have. Can I say, as a keenly interested observer, that having the disease – living with dementia – and living alongside someone with dementia are two different experiences that should be recognised and valued as separate things? I guess I might put it like this: no one who has held the hand of and supported a mother through childbirth would dream of saying they had ‘lived’ the experience … think about it.”
I feel sure, in the same way that language is now used in other sectors – e.g. the LGBTI community, Indigenous communities, the Female sector – the language of dementia will become more enlightened, and many words and phrases are no longer politically current, so this too will happen in the dementia sector, but perhaps only as long as people living with the diagnosis speak up.
Some responses yesterday including not agreeing with my position on this subject, which is also fine, and another opinion for us all to consider. It is ok for us all to agree or disagree, but I would like to say, I hope more people would investigate their own positions, and consider ours more deeply. I’m trying desperately to do that, and may well fail, but trying to is better than not.
Is it as simple as semantics? I’m not sure, but don’t think so. I don’t feel angry about it, but do feel strongly about it, and definitely hope by opening the Pandora’s Box here, there can at least be some open and honest dialogue between us all, even if there is never a consensus. The intention is never to offend our wonderful carers, but rather to give a voice to people with dementia through this blog. Maybe not all, but certainly some.
Please go to the blog comments from yesterday and read everyone’s responses, then join the conversation, either here or there. I am very interested in what others think and feel about the use of the term ‘Living with dementia’. My husband says he agrees with me… I’d love him to comment here too!