What the hell happened to my brain Diagnosed with dementia when I was much too young My children still at school A deadly, terminal disease effecting Memory, thinking, perception, judgment, language and speech But worse than that, effecting my Life, family, friendships, my sense of self, my identity And a bucket load of guilt Truckloads…
Last night in Canberra, I was the joint recipient of a 2015 National Disability Award as Emerging Leader in Disability Awareness. All winners were asked to give an impromptu speech, and although I managed to, I was very emotional, and found it quite difficult to say all the things I should have said! I forgot…
I‘ve been advocating for people with dementia to be included at every single conversation about them for many years now. For the last year or so, have also been actively asking people without dementia, to take action as well. For example, I have been asking that when they get invited to be key-note speakers, or receive invitations…
Honesty can be painful, especially when someone else is telling you something you either don’t know about yourself, or haven’t been able to see or accept about yourself, or perhaps that you don’t like about yourself. Looking in the mirror is for many, the hardest lesson of all; it definitely was for me! Personal growth is…
As co-chair of the Alzheimer’s Australia Consumer’s Dementia Research network, I presented at an Annual Meeting of the Cognitive Decline Partnership Centre (CDPC) this week on why it is important to include consumers in research, in particular people with dementia, as to date, most of the research has been done with care partners or the families…
This is an interesting thought, all the more so when I think about it for people with dementia and memory loss. Often, the things I do remember now that my changing memory or ability to recall information is challenged, are sometimes those things someone has done that I have felt upset by. Men often tell…
There were more than 8000 nominees in Australia for the Australian Of The Year 2016 Awards, and I feel deeply honoured, humbled, proud and delighted to be a part of this amazing group of winners and sixteen finalists. Representing people with dementia and those who support us is my main goal in life these days, in…
The support and of empowering of new leaders from within the global group of people living with a dementia has been one of my biggest goals or aims. It can, at times, also be one of my greatest frustrations, as it is not easy, and the system does not support us to live after diagnosis,…
This may not be such a positive blog today! I have a private blog called ‘What the hell is happening to my brain?’, which many of you know is also the first part of the title of my book soon to be released, and I may have even posted at least one blog with that title before today.…
My blog today consists of some quotes from a blog I read, about the rights of people with disAbilities, the World Health Organisation determination on Discrimination, and my thoughts on all of this in relation to people living with dementia. People with dementia are currently advocating for inclusion and recognition under the United Nations Convention of the Rights…
After my blog yesterday, talking about safety vs autonomy, and my feelings about the traditional styles of residential care, I felt it important to also say, there are many in the sector wanting to improve things for people with dementia and their families. There are, as highlighted in some comments, many family care partners who…
I’ve been asked to write from a consumer’s perspective about whether I think the views of people with dementia could influence the design of residential aged care, and if there is a difference between the view of people with dementia and their families about what a care home should be like. It has been a difficult task, and is for…
Yesterday, it was announced in the media I am one of four SA finalists in the Australian Of The Year Awards. This was for me, incredibly humbling, and also incredible to be recognised for my advocacy and activism for people with dementia, both here in Australia and globally. I don’t do this for money, and am almost…
The saying “Treat others as you wish to be treated” is often bantered around in aged and dementia care, and society in general, and most think it is a lofty goal. In reality, it is the exact opposite of Person Centred Care. This old saying, which many suggest stems from the 10 commandments, is in reality,…
ADI have a charter “I can live well with dementia’ – but still, no-one is telling us how to achieve it, or even that it is possible. For this International Charter to have any traction, people with dementia believe everyone, include their work. I’m also unsure this phrase is helpful, as living beyond dementia seems…
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