Woke up thinking about
@WendyPMitchell
. Not even 4 months since she left us but feels like forever. The world is definitely a little less bright without her wonderful humour, intelligence, bravery, kindness. Sending love to all who miss her x
Just complained to the ASA
@Asa_official
about the terrible
@alzheimerssoc
ad.
In my view this breaches many aspects of Code 4 "Harm and Offence"
It was very simple - go to
The more of us who do this, the more likely it is that the ad will be pulled.
It's
#FridayFollow
Day again... and I've recently set up my own personal Twitter account.
If you value following me, please repost this tweet and recommend to your own followers so I can build up my account.
Many thanks .. and happy Friday!
Just a week to go 'til our new book comes out!
@Innov_Dementia
"People with Dementia at the Heart of Research" explores how research was co-produced through The Dementia Enquirers Model
Pre-order at
@Innov_Dementia
@JKPBooks
@TNLComFund
A big high-5 to my fellow co-author Rachael, to all those who helped us see the
@JKPBooks
book to fruition - and to the hundreds of ppl w
#dementia
who are showing the world how they can (and should) do (and even lead) research.
@LoreleiKing
@alzheimerssoc
Thank you for articulating your distress so well Lorelei. Your point about the sexism underpinning the ad is very powerful too
Re the
@alzheimerssoc
ad
Now several days since I wrote to all the Trustees, inc Chair, V-Chair + all ambassadors, patrons, v-presidents I cd find emails for...
I've only had one reply
Busy ppl yes - but these are public offices. Surely they have a responsibility to respond?
Have you ordered YOURS yet?
@HildaHayo
(Chief Admiral Nurse + CEO
@DementiaUK
says it's: "an essential read for researchers + academics, challenging the myths + misconceptions about the ability of people with
#dementia
to actively participate in research."
@Innov_Dementia
It's
#FridayFollow
Day... and I've recently set up my own personal Twitter account.
If you value following me, please recommend to your own followers so I can build up my account.
Many thanks .. and happy Friday!
@neilmcrowther
Yes... and even if used metaphorically (which it wasn't) it deliberately negates all the humanity which every living person has. I cannot believe that
@alzheimerssoc
cannot (or will not?) understand this.
Thread 6/11
Is there any requirement on your staff or your media partners to adhere to your own guidelines on acceptable language and portrayal of people with dementia in the media?
Stop negative and inaccurate dementia publicity. Show the hopeful, creative possibilities. - Sign the Petition! via
@UKChange
Now only NINE signatures to take this to 1000!!
Thread 10/11
Why are you still promoting your own support services when you have said that everyone with a diagnosis of dementia is effectively already dead?
@neilmcrowther
@alzheimerssoc
Gosh thank you so much Neil, you say everything I've wanted to say, but so much better, And thank you for your honesty about your own experience. Sending all best
@Annagoge
And surely that is what 'awareness raising' should be about.
About how to support and listen to and connect with everyone who has dementia.
Not about what % of the population knows what % will die of it (again and again and again)
@neilmcrowther
@alzheimerssoc
@JacquiBingham
So many questions that need answering and real concerns that need addressing. But AS keeps digging its hole … again and again and again ( to coin a phrase)
@ProfRobHoward
It's a complex world & totally possible for all these things to matter. Maybe they're all connected? Ppl w
#dementia
like Gail + many others shd be congratulated for explaining to us how deeply the neg
@alzheimerssoc
narrative affects their hope, self-esteem + daily lives.
@dr_shibley
Respect yr views but, in a democracy, it's perfectly legit if you are v upset about something to:
- send questions to trustees, patrons etc
- use social media to explain views/ discuss
- start a petition
- make a complaint
Not abnormal. Indeed the sign of an engaged citizen
We have some lovely testimonials for our
@Innov_Dementia
new book about the groundbreaking
#DementiaEnquirers
project
Order your copy from JKP or Amazon.
@mroutled
@alzheimerssoc
It’s unbelievable. And not a peep from the Trustees ( as far as I know?) including the chair. Or the patrons, president , vice president. Do none of them have anything at all to say… like maybe “oops sorry!”
@george_rook
Totally agree with you George. But hard to move on when the film is still out there and distressing more ppl every day. Hoping complaints to
@Asa_official
will bear fruit soon...
@ProfRobHoward
IMO this carers v ppl w
#dementia
dichotomy is sooo unhelpful (btw many of the latter have been the former). The big discussion is if the 'social death' narrative is helpful to ANYone - a focus on personhood, hope, meaning, relationship, inclusion has to be the right way for ALL.
@TommyShakes
Such a complex issue (understatement of the year!). I'm v disappointed that
@BBC
failed to show other views, incl your own Tom. Personally I would like the choice even if I wasn't close to the end, but in an incurable 'predicament'. But I can't see that coming any time soon...
@dr_shibley
@alzheimerssoc
And that’s exactly why the AS should be offering HOPE and leading the way in showing how we can all support ppl w dementia and their families to continue their lives as best they can. That is their job and responsibility.
@RadioTdw
@KateLeeCEO
@alzheimerssoc
It would be good to invite
@KateLeeCEO
to a debate with human rights and lived experience experts who will challenge her. Otherwise I fear it may end up as just another chance for
@alzheimerssoc
to repeat all its defensive (and offensive) statements.
@DUETcare
I'm not sure either - but I've used the email from them to reply with more examples of distress I've come across - and some quotes. Even at this stage I guess the more evidence of harm, the better...
@JanetMagee18
@dr_shibley
@alzheimerssoc
IMHO 'living well' was never any kind of 'expectation' of ppl w
#dementia
or their families. It was an exhortation to services & society to ENABLE ppl to live the best lives they can, WITH support, understanding & positivity. That's a very different thing.
@dr_shibley
@alzheimerssoc
Well it’s not clear who their target is. I assume it’s the public given the TV slots they have chosen. If they want to influence NHS and care services this is no way to do it.