Talking about dementia

Screen Shot 2015-08-13 at 8.32.35 amJust for something different, I am interstate doing a few things related to dementia. This view from my motel room in Gosford today is glorious, although for most of the rest of today I’ll be hanging out in the local RSL club. As a guest in the motel of this club, I was even offered a free one year membership to the Gosford RSL Club, so, for the first, and quite possibly the last, I am an official member of an RSL Club! Who would have thought…

And no, today I will NOT be playing Bingo, or at the pokies!!! Instead, I’ll be attending and presenting at a local event about dementia. On Tuesday, I ran a focus group with a group of people with younger onset dementia and their partners and supporter people. I had been asked by an aged care provider, who is setting up services, including residential care, for people with younger onset dementia, and refreshingly, wanted to really engage with people living in that space, whose lives it changes and shapes.

Perhaps for the first time ever, this group of consumers not only felt listened to, they felt like their effort and words will matter, and will make a difference to the lives of others facing the same road as we are on. To date, we often feel like we are being engaged with, but then nothing happens, no change is ever made within the organisation who asks for our time and lived experience.

Phew… it is slowly happening, and I have a glimmer of hope we will see real change in my life time. This is the second organisation I have started working with now, who truly wants to provide age appropriate services, and to walk the talk of person centred and relationship centred care. Thanks to the many wonderful people  who made such an effort on the day for this to take place, especially those of you wiling to share your deeply personal stories and challenges

Consumer Directed Care is here to stay, and as it is tweaked along the way, we, the consumers – or customers – will have much more say in not only which service we want, but who provides it. So, if organisations do not choose to engage with us, do not choose to build dementia enabling environments, do not choose to engage with using the dementia language guidelines, do not walk the talk of their documentation, we will simply choose someone else.

It will not be possible to provide Consumer Directed Care, using the “About us, without us” philosophy. We’ve been re-empowered, we’ve definitely woken up to our rights, and we are here to stay.

6 thoughts on “Talking about dementia

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