Peter feels he can no longer support Alzheimer’s Society.

Hello Dementia Diaries, it’s Pete here, Peter Berry.

I haven’t done a diary, I don’t think, for a long long while but I thought I would do today.

I was made aware of the Alzheimer’s Society’s film and Debs, my friend, has just shown me the film on her computer and I wanted to ring up today just to share my thoughts about it really.

I am very surprised and I’m also quite upset, I think is the word I am looking for, about how the whole thing has been portrayed. How many times people like us die as they so put very well in their video – not.

I find the whole thing just very disturbing, dark and horrible. It seems to me as though me and many others like me, many of my colleagues in the dementia world, try to promote living well, living the best we can with this condition and yet the Alzheimer’s Society has decided that, it seems to me, though that’s not the correct way that things should be and they have put a different view to that.

It seems to me as though the Alzheimer’s Society want to hear from people living with dementia but they don’t really want to listen to us and that’s very very upsetting. Personally I think that anybody who’s going through the diagnosis process, or who has been recently diagnosed, will get the wrong idea of how the dementia works, how we can live with it, how life is going to be different but it’s not over. I think that they are giving the wrong message.

It seems to me as though the Alzheimer’s Society flies a bigger (or bigot?) flag on the dementia ship and yet they seem to be going in a different direction to all the rest of the organisations.

I feel so strongly about this that, well actually over the last – I’m going to say – year or so, ??? & Beds have done quite a bit for the Alzheimer’s Society we have been involved in many different campaigns and things but I feel so very strongly about this that I have decided to remove my support from the Alzheimer’s Society at this time until I see fit. I just feel so strongly about this that I don’t want to be involved with them any more because why is it that they want to hear from me but they won’t listen to me – that’s the message that I’m really getting.

So that’s where I’m at and just wanted to make this diary just to – I don’t know – just to let people know my views on it as somebody living with the condition, somebody who does the best they can, somebody who lives very well with support and I think that that’s the message.

There are so many wonderful organisations out there that support people like me and many many others and I think that they’re the ones I want to tailor my efforts to now because they’re the ones that seem to have, I think, the right definition of the word hope.

Thank you very much for listening. Bye bye