Requesting others to take action


IScreen Shot 2015-11-25 at 11.25.31 am‘ve been advocating for people with dementia to be included at every single conversation about them for many years now.

For the last year or so, have also been actively asking people without dementia, to take action as well.

For example, I have been asking that when they get invited to be key-note speakers, or receive invitations to join Committees or groups to work on things like steering committees or White papers on dementia, to make sure they insist we are included.

So far, I don’t know of anyone who has done this actively, at least, not to the point where they refuse their own invitation, if people with dementia are not invited to be speakers or part of a group or committee, which is what I have actually been asking some to do more recently.

I’ve talked about it here before now, and on other online forums, but suspect I just piss off those people who are always being invited, even when we are not, but who do nothing about it. Speaking up for us is fine, but doing nothing about it is not actually ok.

Words are obviously not sufficient. We need ACTION. And not just by people with dementia, but by people without dementia, to ensure the right thing is being done, and we are INCLUDED.

The screen shot here today is of a comment on Facebook made by a friend of mine, with my comment below, and is exactly what I mean; she has just said it so much better than I have ever been able to. Thanks Alex!

The ‘nothing about us without us‘ slogan needs to stop being just a slogan.

It needs to be put into real ACTION.

Employing us, including us, and even refusing speaker or other invitations if we are not included at the same time as people with dementia, I really believe must start to happen, for things to ever change.

13 thoughts on “Requesting others to take action

  1. My blog tomorrow will show how Maureen is regaining her confidence and asserting herself. If we continue to have any carers in our house it will be when Maureen wants them. As she frequently says she doesn’t beed babysitting!


    • Well done to both of you…, and Maureen is right, she does not need babysitting, as she is not a baby!!! This is why calling respite series ‘day’ care is equally offensive, as that is what we took our preschool children to…


  2. Hi Kate
    I Fully agree with you, when I do a video or talk to people I always say ask us at the beginning what we want don’t tell us at the end what we need. I must say here in Salford Greater Manchester they are getting it right they have a person with dementia employed within the Trust and are in the process of employing another person. We also have a Dementia Champions group and we are always asked our opinions or if they want to see if something works we are asked to try it out. A step in the right direction I think but a long way to go.


  3. Hi Kate
    I fully agree with you. I always say when doing videos or speaking to ask us what we want at the beginning don’t tell us at the end what we need as this may be a waste of time and MONEY. I must say here in Salford in Greater Manchester they usually ask us. So much so that they have a person with dementia employed with in the trust and are in the process of employing a second person. This has to be a positive step forward.


    • Yay… it is such a relief to hear of good things happening, especially people with dementia being EMPLOYED. Perhaps you would suggest to them, they start presenting and writing publicly about what they are doing, as it is a GOLD standard of practice.


  4. Hi Kate,

    I wish I had said it, I very much believe it. I found the quote on Twitter. I’ve just had a search and I think the credit goes to @eveewing wikipedia brown.

    With you all the way on taking action!

    With love
    Alex x


    • The time is NOW that everyone says, “I’d love to be a speaker or join your group, but not unless you have representation (preferably equal) of people with dementia”. Thanks for your support…


  5. Behind you 100% on this Kate, as is the #KiamaDAG. Actually I did refuse to speak on 2 occasions as no-one with dementia had been invited to. Guess what? The organizers changed their minds, he he!!
    Two important organizations pulled their socks up, many more to go….


    • Well done Doll! I knew you would be doing this, and love you so much more for it too! As you say, it is time for everyone to pull their socks up as well! It still amazes me we need to advocate like this, for people to DO THE RIGHT THING…


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