Agnes updates on her work with Dementia Enquirers.

Good morning everybody, I’m making this report from Edinburgh and it’s Agnes here. I was wanting to reflect that today in Edinburgh we are going to have our Scottish DEEP gathering. So I’ve brought quite a few of the Dementia Enquirers postcards so that people can see what the Dementia Enquirers are about. People with dementia in the driving seat of research.

Now,…….No, I’m not going to say what I was going to say because that’s an assumption.

So today I’ll hand these out and if I get the chance I’ll talk a little bit about it and how our pioneer group met last week in Birmingham. It was a wonderful time and we were supported by a number of advisors who are helping to shape this project.

It was an exciting time because we had put out a call for groups all around the United Kingdom to see if they had any research projects that they thought a little bit of grant, and they could do that would make a difference, influence and challenge the way dementia research is carried out.

So with fun, with laughter and a lot of work we managed to pick out the people who are going to get this grant. It’s just as well my memory is so bad because I haven’t a clue got it and who didn’t, I just know that the projects are exciting and worthwhile and they will be announced shortly.

I just wanted to let everybody know in the pioneers group that I’ll hand these postcards out and chat a little about it. And to let Scotland catch up, almost, because it appears that in Scotland we don’t have the same passion and want to influence and challenge the way dementia research is carried out. It would appear that we in Scotland are contented with the way things are going on and leaving it to the professionals.

But not everyone in Scotland is contented, I know the alumni wasn’t contented, that’s why we tried to do our self-management as a research project. But because we didn’t have the backup of any influential university or research area, it wasn’t as easy. And we in the group, although we had a lot of information about research etc, we didn’t have what it took, really to get this done in a research way.

We done our best, we got what was advice from Edinburgh university on the questions and we carried it out in a research way to the best of our abilities. We really wanted outcomes and decided that to get outcomes we just had to forge ahead in our own way, being in the driving seat to get outcomes. Whether we call it research or not I really don’t know but that will be up to the professionals to decide on that.

We followed the rules and regulations to the best of our ability. We are excited to see that our booklet is getting the graphics, the content is finished, it’s exciting times and the last person is being filmed today.

So, yes, exciting times ahead! Thank goodness we now have the Dementia Enquirers. I’m so pleased to be part of the pioneers group so thanks again to DEEP, thanks again to the Dementia Enquirers. I know, living in Scotland I don’t know what I would do without you. I certainly would not be able to campaign and I certainly wouldn’t have a voice.

Many thanks!
Bye.