“Nothing about us without us”

Why is this a hard concept to get. There are some truly lovely, and wonderful people wanting to offer people living with dementia activities in the community.

My word of advice as someone living with dementia:

Know your community
Make sure you do not do anything without having someone living with dementia to consult with. If these are the people you are doing things for, then ask them first.

What if you have no one to ask? What! Why on earth are you starting things for people without reaching out to them first? Do you see what I am saying here? If you have no one to ask then you don’t know who is in your community who need your help in accessing activities or support.

Does your GP Surgery/Memory Clinic signpost your activity to people who are newly diagnosed living with a memory issue or dementia? These are the people who need peer support and acitivities. First build relationships with your medical centres so that they can tell someone newly diagnosed there is peer support for them to access. Otherwise they can feel that life is over, that there is nothing for them to do other than let their families take over and sit and make the best out of nothing.

Here in the North East of England, DEMENTIA is a word that no-one will speak. It appears to be a word to be ashamed of. Families hide it away within themselves, and will only speak it when talking about having had a member who had ‘it’ – Said with such sadness and dread that requires the voice to lower a little.

I am trying, so so hard to change this in my local town. I am now having to tell people if you want to reach people living with an early diagnosis then never, have the word ‘dementia‘ prominently in your name or description. Instead focus on the word ‘memory’ difficulties with the additive of dementia hidden at the end. Do I think this is a bad thing? No certainly not especially in an area that is not yet open to being open about dementia. Who cares what it is called as long as people can access it whilst attitudes change slowly.

At the moment I feel alone in being involved in starting support/activity groups up because I am yet to be put in touch with others like me living with this disease. They are around because I am told they are…..and that is where it ends… If it were not for the few wonderful people who are passionate about changing our town then I think it would be hopeless.

It’s funny because you can see the other small towns where they have groups for people with dementia that is not focussed on early onset/diagnoses, because their posters and wording is very professional like, and ‘correct’. It is all about them doing things for us, and whilst that is fantastic, it is all encompassing and not for the likes of younger diagnosed people such as myself.

I was part of a conversation the other day that was being had about groups in my Town, and someone saying “what we need is a minibus to take people to other nearby towns to join in activities”. NO, what we need is for someone to ask ME, and others like me in my town what WE want. Sorry, did I shout there. Anyway, there will be a group/meeting/for people who are living with diagnosis of memory difficulties, MCI, and dementia to see if we can first reach people who are around locally. Small steps.