Two years ago I published a series of blogs focused on the need to rethink dementia care, to reframe dementia entirely, on dementia as a major cause of disability, but most especially on the need to ban BPSD (Behavioral and Psychological Symptoms of Dementia). The Coronavirus pandemic has almost proven BPSD is a false construct,…
Dementia and me What the hell happened to my braindiagnosed with dementia when I was much too youngmy children still at schoola deadly terminal disease effectingmemory, thinking, perception, judgment, language and speech But worse than that, effecting mylife, family, friendships, my sense of self, my identityand a bucket load of guilttruckloads of stigma discrimination and…
During Dementia Awareness Month 2020, I’ve been publishing a blog every day, and trying to cover some different topics. Some are quite contentious, but I believe need to be talked about. The status quo in advocacy is driving me a little crazy… Anyway my daily blogging is unlikely to make a difference, but it at…
It is day 4 of Dementia Awareness Month (in Australia!) #DAM2020, and I thought it might be useful to focus on the factors that researchers now know reduce the risk of getting dementia today. The one ‘risk’ of doing this, is that people with dementia may start to be blamed for getting dementia, and this…
It is Day 3 of Dementia Awareness Month here, #DAM2020 and my blog is a recording of a presentation given by Assoc/Professor Lee-Fay Low on 15 August 2019. Lee-Fay is a friend and colleague helping to reframe dementia. I only saw the recording recently, and it’s given me much to think about, and to do!…
Apologies this post was accidentally published yesterday, when is was meant for today, day 2 of #DAM2020! Arrgghhhh! It is easy to hit the wrong button! Anyway, onto much more important things. The need for everyone to rethink dementia continues to be highlighted in the many stories of neglect, abuse, restraint and deaths in Residential…
An Australian organisation called Beyond Blue which is focused on supporting mental health said in a recent article it: “Recognises and understands the feelings of anxiety, distress and concern (BPSC-19) many people may be experiencing in relation to the coronavirus (COVID-19) and offers some advice on how to look after your wellbeing.” Beyond Blue is…
It feels important to (re) acknowledge the challenging nature of these times and I do sincerely hope you are all safe and well. I also want to thank those who have reached out to me at this time of deep grief, here, on social media and by phoning me or calling in. Words do not…
In 2016, I was interviewed by Jessica Kingsley Publishers JKP), soon after the release of my book, What the hell happened to my brain?: Living Beyond Dementia. This is my response to one of the questions: Q: What would be your best piece of advice for others who are living with dementia? A: My advice…
As the time to provide a submission to the Royal Commission into Aged Care Quality and Safety draws to a close, I remain deeply concerned nothing will change, in spite of the more than 8000 submissions, millions of dollars spent on the Royal Commission, and any likely outcomes or ‘recommendatons’. Historically, the Australian government chooses to…
Ending confinement and segregation: barriers to realising human rights in the everyday lives of people living with dementia in residential aged care. This article was published on 25 Jun 2020, in the Australian Journal of Human Rights, by Linda Steele , Kate Swaffer , Ray Carr, Lyn Phillipson & Richard Fleming. Abstract: Human rights are increasingly being considered in Australian law reform…
Personally, I dislike being labelled by anything, including, or especially by a disease. Being labelled to my height, my skin colour, etc. is also offensive, and I simply prefer to be referred to by my name (the one I chose). Negative language and labels have the power to disempower us, as I spoke and…
Before the COVID-19 pandemic, most of the world looked the other way when faced with the reality that even the most basic of human rights were being denied to people with dementia, including at the time of their diagnosis and for the rest of their life thereafter. What this pandemic has done, is to highlight…
Firstly, as we all face the current healthcare crisis, I acknowledge the challenging nature of these times and hope you are all safe and well. I suggest we phone our family and friends, and if that’s difficult, then consider writing a letter or sending a card. I love receiving letters and cards… I’m staying off…
In 2015, Dr Al Power, Daniella Greenwood and I were accused by a young academic of being deeply offensive, and wrong. This was after we had all given keynote presentations at a conference challenging the status quo in dementia care, and in particualr challenging the concept of BPSD. We believed then, and I’m confident I…
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