This article got stuck in the system and I have managed to get it out
It is an old thought that people with dementia cannot get involved with anything.
However these days we are seeing people being diagnosed at an early age, an age where they can do so much, if they are allowed to do so, but this means that society in General has to make this happen.
Many of us are capable of being involved in many projects, and we are doing our best to change attitudes, change ideas and thoughts about dementia, so that things are done to suit us and not the professionals who think they know what we want.
So many of us are involved in reading publications, and wording them so that they are easily understood by joe public as well as those who have this illness. There is nothing worse than a publication, written for general release which Is full of medical jargon.
Some are involved with meetings setting up new methods of helping others who have the illness.
One or two of us are involved in giving presentations about living with the illness, and these are well accepted by establishment these days.
It has often been said that people take more notice when a person with the illness stands up and speaks from the heart, because they are indeed the professionals in dementia as they are living with it.
Many people with dementia benefit from being involved, as it gives them a positive feeling, a feeling that they are wanted and thus also helps others to realise that we can do things, whether discussing projects, speaking or advising others about what would work best.
I have been involved in many projects, however it has been noticeable that one or two have you there so that they can simply tick a box, implying that they involved a person with dementia, whether they listen to what was said did not matter to them.
It mattered to me and found this to be disgusting, especially if it was a government department who should have known better, but all of this depends of whether the chair of the meeting is dementia friendly or not.
We have a saying, Nothing about us without us. Meaning do not talk about us without involving us, as we know better than you as we are living through the illness.
If you are really interested in learning more about the illness, or setting up a project about dementia, then why not ask someone with the illness to come along and get involved. At least we know what we are capable of, and what will suite others better
But please remember that no two people with dementia are the same. We are all individuals on individual journeys with individual problems and symptoms, so no two people with any form of dementia have the same problems.