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 the tick box of inclusion)” is still so far from a reality it can become disheartening.
Full engagement and proper inclusion, of people with dementia, in all things, is simply not happening. This is in part, why we have headed to the UN CRPD to use it as a tool to enforce the much needed change, and also why Dementia Alliance International (DAI) will never be run by people without dementia, no matter how hard it is for us to run it ourselves, and no matter how many people set up in competition or opposition, or misuse our data base or infiltrate the members of our Facebook or other groups to gain access to people with dementia.
DAI is fast becoming so much more than an Advocacy and Support group; of, by and for people with dementia, it has become a growing movement for social change for people with dementia, and we have barely started.
So true Kate-i always say to my self there is always HOPE and i think positively. It is so important to have hope. Even though there probably wont be a cure for Alzhiermers in my Grandad life, i still say that there is always a small glimour of hope that there is therapy to slow down the disease. Your my inspiration Kate, and i love writing comments!Keep up the marvellous work Kate-your wonderful!😊👍
Hope is a wonderful thing, and without it, during my darkest days I may never have found the light again without it.
It sure is wonderful, and i am so glad you hold on to hope. Everyone with Dementia has there good and bad days but my Grandad doesnt know he has Alzhiermers-he thinks hes in perfect health-he is going to respite care tommorow for 4 days to give my Grandma a break.
Kate, there has been huge change around dementia on the world stage in the past 2 years, much of it thanks to your strategic leadership.
If we #KiamaDAGs can fire up one another’s passion when energy is low and make real difference to the lives of people living with dementia in our communities then our hope is real and grounded.
Much love to you sista. xx
Kate, you keep me in line when it would be easier to slap a label on dementia that is the norm. We all have a mentor and you are one of mine.
When I get “lost” in my confusion, I get a nice slap of “remember what I truly believe” from across the pond! 🙂
Thanks dear Susan… together, we can live with dementia, not only die from it xoxox
Thanks for sharing this article Kate
Best wishes,
Craig
My pleasure (???) Craig…
You continue to inspire me with your wisdom, tenacity and spirit. We will overcome them!
Ditto to that Paul… your tenacity with supporting Maureen to live, not only die is uplifting, albeit extremely tiring for you. Always happy to support you in any way – I have felt a little ‘lazy’ not writing daily bogs lately, as know you find them helpful… not meant to let you down, just been either unwell or too busy
we can only sigh and know the difference you have made so far is further than any of these things.
I’m learning to only sigh… obviously a very slow learner! xx
I love your spirit and defiance ❤
I'm also curious to know to whom you refer when you speak of "competition and opposition?"
I'm wondering why there can't be cooperation, co-opetition and collaboration to create a stronger collective voice…?
Susan
The list is quite long Susan… best left unsaid here though.