During Dementia Awareness Month 2020, I’ve been publishing a blog every day, and trying to cover some different topics. Some are quite contentious, but I believe need to be talked about. The status quo in advocacy is driving me a little crazy…
Anyway my daily blogging is unlikely to make a difference, but it at least makes me feel like I’m doing something!
So much more than blogging by someomme like me is needed.
So much more than awareness campaigns are needed.
So much more than stories from people with dementia or their care partners are needed.
So much more than the promises of action are needed.
We need action, right NOW.
My good friend Shibley Rahman who cares for his mum full time, often says awareness campaigns do nothing to improve his, or his mother’s experience. I think he even goes as far as saying they may do harm. I’m not sure that he’s wrong either.
So let’s be brutally honest about advocacy.
- People with dementia are still often referred to as sufferers, even after 25 years of advocates campaigning against it.
- People with dementia still experience stigma.
Peopel with dementia still experience discrimination.
- People with dementia are still being denied adequate post diagnosis support, includign rehabilitation.
- Many people with dementia are even being denied full and equal access to health care. COVID has certainly highlighted that in a very tragic way.
- Many health care professionals know very little about dementia.
And this list could go on. So how do we change the status quo?
Without a major rethink, I am starting to believe that the last 20+ years of dementia advocacy has mostly been a waste of time, if we were to actually measure the progress or change so many have been asking, sometimes almost begging for. The lack of change is palpable and as I said in a recent blog,
Ripples in a pond are no longer enough.
Footnote: I did post this blog a few days ago, but somehow it has ended up back in the drafts folder! It may have been very different to what is published here today, but such is life in the fast lane called dementia!