The importance of being a voice of Dementia


Been a while since I have put pen to paper/keyboard.   I have been away travelling the world again.  Making the most of life, making memories to look back on, to be reminded of when my dementia has progressed.    I will upload my photo’s, look through them, and then write about my experience as a traveller with dementia later.

What else..When I got back I went to Chippenham with the Alzheimer’s Society to take part of a training day for staff in the Swindon area about using PLWD (people living with dementia) appointing staff and volunteers.   My part was a short talk about how important it is for PWD to be involved in every part of organisation aimed at supporting them, whether that is by activities or information.  As it would be with anyone caring for a PWD.

I also sat with each of the groups during exercises which was very interesting to experience.  Hearing how one group of people thought it was not appropriate for someone with dementia to be part of the whole process with volunteers, thinking that it should be reserved for induction training.  That was interesting listening to that train of thought, one which I believe will be discussed and addressed further.

I was able to contribute by talking about why I feel it is so important that we have a voice in the Alzheimer’s Society.   Also, how much they need us as much as we need them.

Once they had discussed whether it was appropriate for someone living with dementia to be on a panel interviewing, I gave my personal thoughts and experience of why it is important for inclusion of PWD and on own experience of being on a part of a panel interviewing for a post in Reading Alzheimer’s Society.  I have been really grateful for Sarah and Claire there for allowing me a role in so many things with the Society.


The thing is, being able to be a small part of Alzheimer’s Society work gives me a sense of purpose, a sense of dignity and obviously a voice for all of us living with dementia locally.

What was exciting was to talk to one of the members there who is just starting a *SURPs group (Service Users Review Panels) with people with dementia.  What is more she was excited to be setting up this local project.  I just know she will make a great success of it.

I think it is important to have a voice in how services are offered to us.  It is important to have a voice in anything, especially locally that affect us in any way.



I urge anyone who is living with dementia and feel that they can still have a voice, or if you are caring for someone, or living with someone who you think who would like to have their voice heard, please do contact your local Alzheimer’s Society, Dementia Action Alliance, councils and any other groups to see how you can be involved.   It is not scary, it is personally empowering, it is as much as you want it to be or not.

*Service User Review Panels (SURPs) are a type of User Involvement group and provide an opportunity for people with dementia to influence the work of Alzheimer’s Society wherever they live in England, Wales and Northern Ireland.

Now to upload my photos from my wonderful travel and then I can tell you all how it went. x

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