Arts for Dementia Stories: Gill and Dave, workshop participants

Posted: 20th February 2024

‘We started to notice something was wrong about four years ago.’ (Gill) It took Dave a good year to get a diagnosis which he received on his return from a wild camping holiday in South Africa. ‘I could see something serious was looming…Dave wasn’t in his comfort zone anymore…’ said his partner Gill. South Africa is a special place for Gill and Dave, they love the people and the wildlife, and Gill is an avid photographer, but on holiday Dave had experienced nightmares, sudden changes in body temperature – he couldn’t drive anymore, and he experienced hallucinations. Coming home, Dave was told that he had Lewy-body dementia.

Dave and Gill are very active, interested, and sociable people, they have a very loving relationship. ‘Dave can still have an opinion and he will still be heard,’ says Gill. There’s a ‘big gap‘ (says Dave) ‘between people’s experience and people’s knowledge about dementia’. It was important for them both to stay engaged, ‘…we were determined to retain function as best we could.’ (Gill) Looking at what was on offer in the community, they struggled to find activities that were right for them. ‘Finding we could go out and do something creative was really refreshing,’ said Gill.

‘…part of it is learning new skills…part of it is talking to people who have got the same problem as me and I don’t have to be on the defensive. I find talking to people hard…we all have big gaps in our conversation shall we say? and when you do unfortunate things like spitting or slobbering people are empathetic.’ (Dave)

Gill and Dave have attended three programmes run by Arts for Dementia. They have been challenged and had the chance to ‘show off’ says Dave. They have used fish to make prints, they have been on stage at Southwark Playhouse, they have been inspired by online Art Wednesdays, and they have exhibited their work with ‘favourable responses’ (Dave). Gill loves the range of materials and the variety of activities on offer. Gill and Dave feel supported and encouraged in the sessions, they have made good friendships with another couple Andrew and Inez. They like the routine of going each week, knowing their journey, the hot chocolate beforehand, and the regularity of the team from Arts for Dementia. ‘There’s a certain magic that happens there each week. … You go home feeling good about yourself’ (Gill).

Importantly for Gill as a carer it’s a time to relax and not worry about Dave, ‘it gives me a chance to think about what I want to do… I loved it because I see Dave enjoying himself…and expressing himself…seeing him producing things is just lovely…and I get my own kicks…self-expression.’ (Gill)

Dave, commenting on the printing workshop, said ‘…it made me look at things differently …have a day when I’m not thinking about my illness…when I can be fairly normalish.’ Taking part in the programmes, ‘Dave and I both became very calmed and less self-critical.’ (Gill)

Gill and Dave say that they talk about the workshops a lot, and they will, in Gill’s words ‘miss it like hell when its finishes.’ They intend to go to South Africa again ‘but maybe not camping.’ (Gill)