The discourse of suffering has long been a topic of lived/living experience dementia advocates and activists. Most people who’ve followed me here will know I have been very vocal about it, and how it is harmful to people living with a dementia diagnosis at any age. I presented on the topic on the power of…
I’m sharing some exciting news about the next chapter in the life of the Dignity Manifesto of Design for People Living with Dementia. Since its inception, the Manifesto has sought to set out clear values and design principles that uphold the dignity, autonomy, and wellbeing of people living with dementia. It grew from the foundations…
As always, articles on language are of great interest to me, especially as I continue to hear people with dementia being referred to as ‘demented’, or as ‘suffering’ from, or ‘sufferers’. Perhaps even worse, this year ‘we’ were collectively referred to as “…the weakest amongst us…“! Frankly, this last one would be unbeleivable, if it…
Dementia is of course, a topic that is quite rightly covered during the World Health Assembly (WHA). Members and staff of some of the dementia charities such as Alzheimer’s Disese International (ADI) attend, host side events and so on. I’ve attended a few of them, including the 2017 WHA when the Global Action Plan on…
My usual effervescence and optimism disappeared momentarily when I learned last week that the Australian Therapeutic Goods Administration (TGA) has approved the use of donanemab in Australia. Evidence is weak for benefits, but high for serious side effects, some even causing death. It is only for people in the early stages of Alzheimer’s disease. And…
What went wrong? Uncovering the Crisis at the International Disability Alliance The following is an introduction to an important blog by Peter Torres Fremlin, a report which uncovers the crisis at the International Disability Alliance (IDA). Peter looks into what went wrong at the International disability Alliance – not only to inform us, but to…
Over the years, I’ve presented at events themed, ‘the elephants in the room’, and even wrote a chapter in a book published last year on this theme. It is titled, About Us Without All of Us: The Elephants in the Room. Todays blog is about a very big elephant in the room, which he goes…
More today on strategies to improve brain health, this blog was first published on my Living Beyond Dementia™ website… Anyone who follows this site knows I have been a believer in Bredesen’s Protocol, although I do have some healthy scepticism as well! In saying that, I believe if we don’t view dementia as a chronic disease, which…
Today is the final day of Dementia Awareness Month 2020, and it has been a marathon of sorts posting daily blogs, although it has been helpful having hundreds in my draft folder. It now takes me a long time to read, think things through, and even longer after than to write coherently. So, as I…
Below are some screen shots of some positive comments via email and twitter following an article I co authored with my dear friend and colleague Shibley Rahman. If I was able to, I would have embedded the twitter comments, but alas, even after quite a few attempts, I gave up! So far, we have only…
I’ve been following this blog Dementia, Caregiving and Life in General written by the daughter of a woman with Alzheimer’s Disease for a few years now, and her blog today has started me thinking again about forgetfulness. The last line of her blog, Forgotten, in a manner says: “I think I can accept being forgotten. It’s the forgetting I’d rather not…
Hello. The blog A Manifesto For Radical Inclusion written by Dr Al Power on ChangingAging has a taste of Richard Taylor in it. The gloves are no longer hanging on the wall of the gym, they are coming off, all around the world. As Al mentioned last week, Richard once sent him an email saying, “Welcome. I’ve been…
The topic of sex and dementia is one I have been thinking about writing on for some time, and now seems the right time to post something about it. Many have written and talked about people with dementia and sexuality, including writing articles and books about it, but so far, I have not found very…
The loneliness of my grief is sometimes like my private torment, only visible to my heart and soul… I try desperately to hide my tears, to live inside my ‘denial bubble’, but every now and then the pain escapes. It is then that I realise that my eyes are filled with tears, and the indescribable sadness,…
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