The stigma and ignorance continue. Today I sat through another meeting, where one topic on the agenda was about whether to nominate a person with dementia to join a Ministerial committee, to represent this committee I am on. Sadly, there was not one person there who felt it suitable, and in fact one carer suggested perhaps there would need to be a person without dementia, as a backup for the person with dementia, if ever this group was to recommend it. I have been to face to face meetings with this group held over 2 days, and have not needed a backup yet. Nor have the other people with dementia sitting on this committee.
The stigma still being displayed by people without dementia, towards people with dementia seems systemic and endemic, and clearly we still have a long way to go. If early diagnosis means people with dementia remain capable for a much longer period of time to speak up for themselves, perhaps, one might ask, is this a reason why diagnosis is delayed so much. Better to wait to diagnose us until it is too late for us to have a voice. At a recent event earlier this year, I was told, when I brought up the item on the agenda of how to use funding for younger onset dementia, I was told by a number of experts, “it wasn’t worth discussing, as there were not enough of you to waste the funding on.” There are literally hundreds of examples like this I could tell you about.
At the Para Olympic Games, it would not make sense to have able-bodied athletes competing. Why then, does it make sense to have conferences, committees, forums and other groups of people, making decisions for and about people with dementia, and not have that group of people involved and represented? During Dementia Awareness Week in Australia later this month, there are many conferences, forums and activities for professionals and carers, and not one event that I have been able to find for people with dementia. Also, not one person with dementia is speaking at any of these events. The stigma must be so systemic that even organisations cannot see their own positions reek of stigma and ignorance.
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Great post Kate – great post. What does AA say about this topic? About giving a voice to those with dementia??
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Talks are in progress… no suitable outcomes yet!
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Kate, the issue of under (read minus) representation of opportunities for people with dementia (the experts) in Australia to present at conferences, workshops, training sessions etc has been really bugging me lately. It seems such a gaping hole that I am surprised organisers of these events havent fallen into it yet and wised up! How about an event whose agenda, topics, format is driven and speakers chosen by people with dementia? What could it look like? I am sure the Scottish Dementia Working Group have done something like this?
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Oh yes, it is on my agenda. WHEN I set up the Australian Dementia Working Group, that is EXACTLY what will be our first event!!
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gggrrrrrr how cross i am feeling in this blog dear kate, how bloody (excuse me) ignorant are the experts (so called in my opinion)am feeling at a loss what to write now, just how i feel for you. but dont ever give up please, as i know you wont. as if you need backup like you said. dont these people know anything about you and what a wonderful person you are and what you are trying to achieve, boo hooo to them i say. Their loss.
xxxxx
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Yes, grrrr indeed! However, my first few drafts contained a few words worse than grrrr!!!! I will continue on, in a more dedicated way, and will be a little more guarded but aiming for a much more impactful and positive result. What you have written is PERFECT, as ALWAYS. Love you to the moon and back my darling friend Jac xoxox
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Sadly as you know Kate ‘medical experts & opinion makers” are their own worst enemies, they base decision purely on the worst and best end of the spectrum which makes those in the middle left to families to care for. Keep going Kate one voice is more powerful than none
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it is a bit lonely, but hopefully others will eventually join me … having friends out there actively support me is hugely beneficial thoug, so thanks for your support
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I have to share your complete and utter disbelief with that decision. I am only all too aware that most of the wider community still views dementia as something that only older people get that is completely mentally debilitating.
However I would have thought that a group made up of carers of and people with dementia (I am assuming this from your post) would have had the requisite education, knowledge and insight to understand that many people with dementia are more than capable of standing up and advocating for themselves.
Overall just really disappointing.
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Thanks for your support Josh. As you say, overall very disappointing. It is however, more often than not, the story of the lives of people with dementia!!
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