Jacqui reminds professionals that people with dementia still have skills

Hello it’s Jacqui, today is my day of rest anyway I was so excited when I heard about the Dementia Enquirers and I asked if I could apply and we were given a grant to do a project which we have been doing on Alexa. But unfortunately the way that Educate works is the professionals at the memory clinic do all the paperwork and organising and they just invite the members of Educate to go to different places and to share um educate different organisations and give talks to schools the process is kind of seen as a research project.
And um I’ve been really frustrated because the officials took it over and were sort of excluding the group the project group from everything and not allowing us to be in control of the project, so it’s really very different, the dementia enquiries and its taken thee Educate professionals awhile to realize that people with dementia are quite capable of doing research. We are even quite capable of writing up the research, we are quite capable of doing questionnaires, we are quite capable of all the aspects.
What we need is just the same, as we all need.. support, just to give us the support when we ask dont take over us and um don’t really make me feel that my skills are not valuable. So I do think there is going to be a shift in thee mentality or a big mind shift into realising that people with dementia want to use the skills that we had at work and university and that we are still capable and when we need help we will ask for it. That we don’t want a professional to take over and tell us what to do, when to do and what we are allowed to do. That we can make those decisions ourselves, we have dementia but we can still do many things.
And there is a lot of assistance technology that I used at university when I had the two strokes, thee university gave me assistive technology on my computer which allowed me to um study in a different way and to round up my project in a different way. So we need to adapt,the young onset people are still able to do many things and want to do things not all of us want to go out and speak some of us want to do research I like to do both I like to do art and I don’t like to do singing cause thats not available because I’m in the minority.
So I do think there is a big shift coming that the professionals need to get on board and realise that we don’t just want to be told what to do that dementia is still, but we can still do a lot of other things that we’ve always done, but we will ask for support when we need it.
So I really um feel grateful to Philly for coming to the Educate meeting, what a brave decision. She was just what I needed and the way that she spoke to our group and everybody was able to talk and she didn’t take over the group at all um she pulled gently out of us where we would like to be involved in the project, and it was just so wonderful. So I was just so much more encouraged, thank you.
Bye bye