There has been an ongoing debate in the dementia community about language, now for many years, and even though there are ‘dementia language guidelines’, I have regularly been told by researchers, universities, service providers and others without dementia, “but we don’t have to use them, they are after all, only guidelines!” Family care partners often…
Jessica Kingsley Publishers in the UK sent me a few questions to answer about what is was like when first diagnosed with dementia, how dementia has impacted my life and family, and on living beyond dementia, continuing to study and much more… you can hear my response here. My book “What the hell happened to…
Well, today is actually the day! My book on living beyond dementia is officially released, although, as yet I have not even seen a copy; it is only a very few lucky people in the UK have actually seen it. So, when (if) I get a copy, I’ll take a photo and add it here! It’s been…
It may not be true everywhere in the world just now, but here in Australia where I live, the sun is almost always shining, even in winter. It may be too hot some of the time, but the beauty and radiance of our clear blue skies and sunshine always helps one to feel like getting out of bed…
Apart from the thrill of finding out one of my blogs titled The Power of Language was the top resource for Cosmopolita Scotland late last year, I remain confused that people find it so challenging to respect the wish of many, not to PUBLICLY refer to people with dementia as sufferers. Yes, I am happy about this……
On January 21st, 8pm in Australia, 9.30am in the UK, mid afternoon in the USA, I will be holding a Q & A on Twitter for its release. Yes, it will be out that day… I think I am as nervous as I am excited! Jessica Kingsley Publishers (JKP), who are publishing my book will be online as well.…
Writing a book, speaking out about living with dementia and blogging prevents denial… but it is also very healing. We all have stories, and many of them actually need to be told. The stories that remain hidden, often go on to hurt…
To be discussed in more detail in my soon to be released book, What the hell happened to my brain?: Living beyond dementia.
The new year has arrived, and I’m still wondering how on earth I arrived at the year 2000! The older we get, the quicker the years seems to go, but of course as I’ve speculated before, that is relative to our age as a year at my age, is more than 1/50th of my age, where…
Yes, I am suffering… but only some of the time not every moment of every day And, importantly… not always from dementia more often from the language of dementia The symptoms of dementia do not consume me one hundred percent of the time Only some moments of some days and definitely not all days So why then must others…
This is a simple, succinct quote on who’s got the problem in caring for or communicating with people with dementia, and if this point was taken seriously, and considered fully in the dementia sector, 90% of the so-called ‘challenging behaviours’ we are so negatively and glibly labelled with would probably never surface… If you can’t understand…
It is truly wonderful to see this project, and the work in the Kiama Municipal Council and University of Wollongong being recognised for its significance, and I am proud to call many of the people in the video my friends and to have been a part of the work there. Personally, I believe the Dementia Friendly…
If giving the world the best I have, means I get kicked, loved, or ignored, it is still my choice to give it my best, and to speak up for all people with dementia, for our human rights, our disAbility rights, and for inclusion, no discrimination, reducing stigma and isolation, and for respect, including respectful…
One of the biggest challenges for me is letting go of the abilities I once had. Yes, I know it is easy to say, “but you can still do so many things”, but let me just say how devastating it is having to let go of functioning. I am not talking about physical functioning, as…
It seems my focus on our basic human rights, and disAbility rights, is keeping me focussed on the UN CRPD this week, and I suspect this is where I needed to be about six years ago when I first started speaking out as an advocate… better late than never! 🙂 Seeing the person, not the dementia or…
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