September this year was a very busy one. There were lots of highs and a few lows, and even a couple of things I’d rather forget! The events hosted by Dementia Alliance International including the four Master Classes and two Webinars were well received, and also helped us evaluate the value of such events. As Dementia Alliance International works towards providing formal subjects of the lived experience of dementia, they were a great way to involve members and others in important discussions. All of the recorded classes are now on the DAI YouTube channel.
Alzheimer’s Australia had an invited international speaker Steve Milton during Dementia Awareness Month presenting lectures around Australia, and the three I attended were excellent. The people missing mostly were people with dementia, and although there were a few at each event, in my opinion, a few is never enough. Making decisions and discussing what dementia friendly means for people with dementia, by people without dementia feels wrong, and we need to empower more people with dementia to be brave enough to speak up for themselves.
In my role as a Consultant with Alzheimer’s Australia, it is one of my briefs to empower more people with dementia to become involved… wish me luck, there are still some who do not really want us involved, as we are threatening their current status quo and positions of power and control. But with baby steps, and the good will and excellent initiatives of Alzheimer’s Australia, I do feel we will get there.
What my being employed by Alzheimer’s Australia really shows, is that there is “A gross underestimation of the capacity of people with dementia”, and I would add, “even in the later stages of dementia”, based on my own experiences working and volunteering in aged and dementia care for almost 40 years.
It is always difficult at the beginning of big changes, and people with dementia, being fully included, and having a voice, is a relatively new phenomenon. But we are speaking out in greater numbers, and are not going to be quiet, so eventually those who are not yet comfortable with this change, will get on board. They will have to, or they will need to move into a different sector.
One quote from Steve Milton, which I tweeted on the day I heard it is this: “If you work in the sector and are not really cross about what is happening to people with dementia, then you need to get a new job!”
I’ve had the pleasure of being in Perth for a couple of days earlier this week, and have met many of the staff from Alzheimer’s Australia Western Australia… they are quite literally a breath of fresh air, and it was a delight to spend time with them. It is apparent they love their jobs, are collaborating with the whole sector and each other, they are not competing against the service providers; their primary goal seems to be to listen to people with dementia and their carers, and to build capacity in the whole sector, rather than just build an empire.
On a couple of occasions, I was horrified at some of the attitudes of people without dementia in positions of power within some organisations. For example, one chap told me very directly, it is “appropriate to discriminate against people with dementia”.
Extraordinary 1) that he would own up to this attitude, and 2) that he argued vehemently for his and the organisations right to discriminate against people with dementia. He was arrogant and self-righteous in the extreme, and highly offensive. It is obvious we still have a very long way to go for a remotely level playing field with people like this in positions of power. Unfortunately, it often takes a legal case to force change, so I really hope someone with dementia has the energy to take someone like this on one day.
However, as my dear friend, colleague and kindred spirit Richard Taylor taught me to say, Onwards and upwards amongst the clouds through the fog (or something like that!).