A Rare Dementia Support group member speaks about his experiences at a Frontotemporal Dementia (FTD) support group meeting held at The Hub in January 2017, and the value of some of the arts-based activities being developed by Created out of Mind with people with dementias. He is a carer for his sister, who has FTD.
"As always, I found the meeting useful, especially the new user-friendly surroundings. Full marks to Wellcome Collection for providing the space.
I took Charlie Harrison up on his request for me to draw a straight line and circle, and also took away the equipment for my sister to complete. I visited my sister immediately after the meeting and told her that I had a "job" for her to do and she was fully cooperative. I do have to say, though, that despite several practice runs with a dry brush she insisted on making the line and circle neater by going over the bits where the paint was thinner. I was impressed by how neatly she drew them both. Interestingly, she seems to be good with numbers and shapes despite having lost the meaning of many words. She was doing sudoku and I was very impressed by how neatly she drew the numbers. This horrible disease can still give pleasant surprises.
I found Charlie Murphy's presentation very interesting but didn't take her up on her offer to paint ceramics as I have to accept that I have zero artistic ability.
Janneke van Leeuwen's presentation opened my eyes. It had never occurred to me that what our eyes can see is not the same as what our minds perceive! Janneke's ongoing research should be fascinating and I look forward to seeing what's next.
I had a good chat with Susanna Howard over lunch and she kindly put me in touch with Kathryn Gilfoy at the Westminster Arts Project. My sister has attended at least a couple of the music sessions at Westminster Arts and seems enthusiastic.
It was a great meeting and it is good to know that there is now such a variety of research going on. It is also really important to have a space where carers can get together, exchange ideas and ask questions; the practical advice obtained from others in support group sessions can't be underestimated."
If you would like to learn more about FTD and the important work of Rare Dementia Support, please visit their website at raredementiasupport.org.
If you would like to learn more about any of these projects you can find them in the Research section of this website: here he talks mainly about the projects 'Single Yellow Lines' and 'Thinking eyes'.