I’m too old, and definitely past being worried if being too honest or too direct is seen as confronting or annoying. After all, just like you (sooner or later), I’m dying. To say I’m more than tired of the hidden agendas of academics and others in the dementia world, is a major understatement. Many, including…
Try as I might, I am currently really struggling to convince a group of global researchers on the importance of adding two simple things to a list of possible interventions following a diagnosis of dementia. It has got to the point, I feel discriminated and stigmatised by them, as most in the group generally seem…
Today I appeared at the last day of the dementia hearings as a witness at the Australian Royal Commission into Aged Care. I’m feeling emotionally shattered by this. Unexpectedly so. This was in honour of the 50 million people living with dementia globally and our families. I also dedicated today’s attendance at the Hearing and…
It seems that expert researchers and medical doctors have had it wrong… in fact millions of patients they diagnosed with AD, don’t in fact have it. From an article, New type of dementia identified By Michelle RobertsHealth editor, BBC News online, 30 April 2019. “There’s no doubt that many people who were previously called Alzheimer’s,…
HAVE YOUR SAY IN AUSTRALIA: Consultation on the National Disability Strategy for beyond 2020 The Commonwealth Government is consulting with people with disability about the new national disability strategy which will replace the current one that ends in 2020. It’s all about creating a more inclusive society that enables people with disability to fulfil their…
Life continues to be a roller coaster for almost everyone; I stumbled across this yesterday, and think it’s truly profound.
I invite you to get involved in this important research project. Even if it is not possible to attend our focus groups in May, your participation is important. Please also feel free to share this blog, or download the flier
From the blog, Memory for two: “For the first three months after Ash’s diagnosis (and many months/years leading up to it) I was cross with him and at the world for not giving me the life I was expecting. As a result Ash was permanently in a state of turmoil and really struggled to cope…
In the dementia care arena, every normal recreational pursuit is being labeled as therapy. I’ve got a real issue with it, as it medicalises everything ‘we’ do, almost as if others don’t engage in these ‘activities’. Why would I be comfortable going into therapy, when that word implies I’m needy and sick in some way…
Sending love and healing to everyone with a broken heart 💔
The last two days I’ve been working in Sydney with a group of professionals ranging from experts in government policy, expert researchers, clinicians, medical doctors, service providers, NGOs, and dementia consultants. Oh, and me, a representative of people with dementia, more often referred to only as a ‘consumer’. Except I was also there in my…
In my blog The impact of Betrayal Trauma, published quite recently (although it says it was posted in January), it seems to have opened up a few wounds and hearts of many others I’ve been talking to. It is especially sad to know this is such a familiar and common experience, and I go back to…
The Australian Commonwealth Government has announced plans to commence a Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. The Royal Commission will focus on what governments, institutions and the community should do to prevent, and respond to, violence, abuse, neglect and exploitation of people with disability. The Commonwealth Government is seeking…
Image source: Kate Swaffer 2019 For me, exceptional food is almost as good for my soul as being with my best friends. I recently had the chance to spend time with two people whom I love dearly, and are truly special and loyal adopted family; I was also able to share a meal with one…
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