Try as I might, I am currently really struggling to convince a group of global researchers on the importance of adding two simple things to a list of possible interventions following a diagnosis of dementia. It has got to the point, I feel discriminated and stigmatised by them, as most in the group generally seem unwilling to engage with me directly. Is it any wonder we seem to still be in the dark ages when we receive a diagnosis of dementia?
Seriously, I know I am direct, perhaps even a tad too blunt, but I am also very approachable, and up for a health debate over anything except politics.
Most of the current campaigns, including stigma surveys, all developed by well intentioned, employed people, who themselves do not (yet) live with dementia, generally continue to stigmatise and discriminate, and actually often also undermine the advocacy work of so many peoiple with dementia around the world.
The quote above which I found on Twitter is from 2018, but I am told by new members of the DAI peer to peer support groups, almost daily, that peple being diagnosed with dementia even today, are still mostly only being told to go home and to prepare for the end. The narrative has changed to living well, which is not necessarily helpful either, as what does that mean anyway? It is different for everyone.
Yet, in spite if the slowly changng public and even academic discourse, no one is yet advising people with dementia how they can live positively with dementia.
We will need to keep asking for disabilty assessment and disability support, immediately following a diangosis of dementia. This is after all, a basic human right, and part of full and equal access to Universal Health Care. (Kate Swaffer © 2019)
Eventually, others may understand why, and perhaps even act on it, as based on the predicted prevalence from the World Health Organisation, they themselves may end up with dementia. ‘I’m tired Boss’, and maybe a little grumpy at having to say the same thing, over and over and over, for so long, but it seems, the time is not now to give up, as the global work is not yet done!