Apparently four years ago today I set up this blog, although it doesn’t feel like my 4th anniversary, as I didn’t really start writing and publishing blogs until the 2nd September 2011, many weeks later. But, I guess it is still worth celebrating, as the seed was actually planted on this day four years ago, and blogging has become a large part of my life.
This blog is so much more than my memory bank now, and is more of a communication tool, a conduit between others interested in not only dementia, but positive living, poetry, humour and a lot of others things! It is where I share the good, the bad, and sometimes the downright ugly!
It is where I write about the things I am feeling, especially about living with the symptoms of dementia, but also I write about the things I feel are a breach of our basic human rights.
It is where I highlight things like the offensive article in the Australian Financial Review, the one where I have still not had a reply to my second and third letter to the Editor. It is also where I question why people with dementia have not been included as key to speakers, in conference that are about them.
I’m sure, there are some who wish I would simply go away, but that is not going to happen, at least until I can no longer write, or function, or die! On the flip side, it is also where I receive a lot of very positive feedback from not only people with dementia, but from others interested in dementia, or family carers or supporters of people with dementia, or those working in the sector wanting to make positive change. I hope by ruffling feathers, by challenging the status quo, change eventually takes place, although on some days, it is hard to believe that will actually happen across the whole sector. We still have advocacy organisations operating about us without us, and researchers or clinicians insistent on categorising us as challenging behaviours…
But we also have a lot of others advocating now, some quite loudly, for change, alongside of those of us living with a diagnosis of dementia. I certainly do not feel as alone as I did, even two years ago.
But, are we there yet, in terms of improving the lives of people with dementia?
This blog is mostly concerned with that, and although we have made some positive progress, we have such a long way still to go… We are still experiencing Prescribed Disengagement. We still are not offered brain injury rehabilitation or ethical pathways of care (IMHO). We are still being talked about or referred to by many with disrespectful and offensive language, and too many still refuse to engage and use the latest dementia language guidelines. Too often, people with dementia are still not invited to present at conferences in the same key-note line ups as everyone else. Big Pharma is still winning, and research for a cure, is still at the cost of research for improving care, or for non pharmacological and positive psychosocial interventions. There really is big money in dementia, and this is so often at the expense of the care of people with dementia, rather than actually improving the lives of the very group they imply they are aiming to help.
Full inclusion and real engagement, is not yet happening. If it was, the organisations advocating for us, and advocating for dementia friendly communities would be employing people with dementia. They are talking the talk, but not yet walking their own talk. This lack of full inclusion simply exacerbates the stigma, discrimination and isolation these organisations say they are advocating to change. The dementia friendly campaigns seem, for now, look as if they are being used for an organisation’s self promotion; “Look what we are doing. Engaging and empowering people with dementia!” One could say, big deal.
It is, to me, very simple; if you want to promote or work towards providing dementia friendly communities, start from within. Full inclusion and real engagement really does equal employing people with dementia. It really is the litmus test of whether an organisation believes what they preach. Until this happens, we will never be there.