Well, technically it is Day 2 of #DAM2016 in Australia, but as it is before midnight on September 1 in the UK, I could also say it is Day 1 of #WAM2016! I have not been here at all lately, in part due to health issues but also trying almost desperately to keep up with my studies.…
Dementia Alliance International has a new survey about dementia friendly communities for people with dementia and their care partners (meaning an unpaid family carer or significant other who is actively supporting them). We are very keen to hear your thoughts and that these campaigns and initiatives mean to you, and if they have positively impacted…
With permission from Alzheimer’s Australia, I am sharing their latest survey: This year for Dementia Awareness Month we are asking you to tell us about your social connections and contact with family. Please take our anonymous survey by clicking here.https://www.surveymonkey.com/r/DAM2016 It will only take 3-4 minutes. We will publish these results in September, 2016 to raise…
It is Saturday in Australia, and the first thing I’d like to do is say Happy Birthday to Shibley Rahman, a friend and colleague who will wake up in London, hopefully to a sunny day! It is not a great shot of me, but the flowers surrounding the entrance of the Bloomsbury Hotel in London…
It is a big week for DAI members in the UK as today is the beginning of Dementia Awareness Week in the UK. To coincide with it and the acceptance of a human rights approach to dementia by ADI and the ADI Council members in Budapest, Dementia Alliance International is releasing its first official publication on…
Over the last few months, perhaps years, I’ve noticed an increasingly offended, and even occasionally, an increasingly outraged voice from care partners of people with dementia, objecting to the louder global voice and inclusion of people with dementia. We are quite rightly, adding to the public discourse on dementia. There has, for a number of years now, been…
Change is almost always difficult for people, and the wave of change via the voices of people with dementia is quickly growing. In fact, getting dementia might mean we are lucky, as we are getting used to change now, as it is happening inside our brains and bodies every single day. On top of that,…
Consumer engagement has been an overused catchphrase the last few years, especially in the medical conditions or diseases sector. Often, receiving grants now depend on an organisation or researcher engaging with us. There is also a significant amount of intellectual property to be gleaned (for free, and often not acknowledged) from consumers, and high profile consumer engagement can…
This article was exactly what I needed to read a few weeks ago, especially after feeling such angst, despair and frustration about people without dementia, continuing to exclude the group I represent. The phrase, Nothing about us, without us (apart from helping to get funding applications approved – where we are more often still…
Harry Potter and the Dementors is a topic I have written about before here, to describe the feelings I still sometimes have about the effects of having dementia. The Power of Language and dementia, language and respect, and language in general and the rights of people with dementia to decide what is and what is…
This week, Dementia Alliance International (DAI) is holding another of its monthly educational Webinars, and I forgot to share it here. Our guest speaker is Emeritus Professor Rhonda Nay, and she is talking on Sexuality and dementia: Rights, risks and responsibilities. About Rhonda’s session: Walk into a room and say ‘sex’ and everyone will sit up and listen. Sex…
I cannot claim this is what most or even many people with dementia would want their families and friends who no longer support them or visit them or spend time with them since being diagnosed with dementia to hear… A great many of us with dementia no longer have ‘active’ relationships with them, although we…
It is normal for some relationships to deteriorate into power struggles over who is right and who is wrong, but it does not seem so okay when it is power struggles and egos of people without dementia who don’t appear to want people with dementia to stand on their own two feet. In my thinking…
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…
It is indeed an honour to be listed as a State Finalist Australian of the Year 2016, and yet I feel strangely uncomfortable being named amongst this formidable group of Australians, or even being a finalist at all. My work as an advocate for people with dementia, which in fact is now more than 47 million…
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