Dementia Voice: John Kelly's story

John Kelly, who has vascular dementia, enjoys talking about his experiences at events. 

‘If I can shine a bit of light and create a bit of hope for people then I am happy. It’s about showing people there is nothing to be ashamed of and to ask others for help when you need it’

John Kelly and Vivienne

How did you become involved and what was your role?

I went to a meeting that was being held at the Mansion House in St Helen’s Merseyside, to see what awareness there was relating to dementia in the St Helen’s area.

I was so nervous I waited in my car for ten minutes before I went in.

After the second meeting, the Looking Forward Dementia Support Group was formed. Tish McKee and myself are the two founder members and I became the chair-person of the now three groups which have a total of 75 members. 

These groups are peer support networks for people with dementia and with memory issues. The groups are member-led with a focus on bringing enjoyment back into life. We have discussions on what we used to do or feel we can’t do any longer and then we work together to find ways to support each other to do these things. From nature walks and bingo to knitting, it is all about keeping the brain active and laughing and enjoying ourselves along the way. 

Due to my involvement in the groups, I was approached by Steve, a local Dementia Action Alliance Coordinator, to talk about my diagnosis and the formation of the groups at events. 

Can you tell us a bit more about what it was like to be involved?

I wanted to give my two pence to help challenge the stigma around dementia. 

I gave a talk at a Cubs meeting, which is a social group for children between 8 and 10 years old and is part of the Scouts Association. It’s through situations like this and talking to young people to help them understand what dementia is that are so important in changing people’s views.

When I was diagnosed with vascular dementia I was in a very dark place. I felt like I was back at school and people were looking at me and what I was doing and were ready to criticise it.

I had to retire early from my job as a Racking Electrical Plumbing Engineer, which was something I loved and had done for over 20 years. I was so sad to leave it and wanted to continue to use my skills around communicating with people.

Chairing the Looking Forward Dementia Support Groups and speaking at events has enabled me to continue to use these skills and to keep them for longer.

What do you gain from being involved?

I enjoy talking at events and am really honoured and humbled that I have been asked to do it. It is a real privilege to talk about my experience and then to answer questions from the audience.

Through answering people’s questions and worries about memory, I can give them confidence in having conversations again.

I can see the intensity of people’s concentration and often they are so quiet I could hear a pin drop, so I know I have their attention!

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