ArticlesBlog

Created Out of Mind: Shaping perceptions of dementias

Created Out of Mind: Shaping perceptions of dementias


I’m good at music, but I’ve got this
funny diagnosis of semantic dementia, which is a very strong, very strong
diagnosis. But I can do music. Wellcome was interested in what it
means when you take a range of different people, so this could be
artists, academics, scientists, broadcasters, activists out of their kind
of home environment or home institutions and put them in what is
essentially a neutral space. We’re all working towards a bigger
picture, which is about improving the perceptions of what life is like for
somebody who is experiencing dementia. People with dementia can be highly
creative, they can be engaged with society around them and the arts in
particular I think are one avenue to help with that engagement. It’s probably about the only thing that’s
nice for me to do these days. One of the primary misconceptions about
dementia that we wanted to challenge is the very basic that its dementias is not
dementia, and you can’t pre-judge or apply stereotypes As with everybody, everyone’s an
individual and their experience of the world is in an individual way. Sadly my mother was diagnosed with
frontal temporal lobe dementia, behavioural variant. My Mum’s
relationship with music is interesting. Her communication is very hit and miss,
yet if you put Rocket Man on, the moment the music kicks in, she’ll sing it
from start to finish. And there would be an emotion that wasn’t happy, it wasn’t
sad, it kind of was just all this emotion coming to her because of the music. And I think we’re learning to love and appreciate this new person
that we’re dealing with. Today, like this evening, listening to
the music is so good, so it just makes everybody sort of smiling and it
makes a big difference. I’m working with a molecular
neuroscientist, called Selina, who is researching the tao protein and the
impact that has on neuronal networks. Her lab are processing and developing a
sample of my skin and some of my colleagues’ skin and we are participating
in her research directly by donating ourselves. Through our conversations,
we’ve been developing this event together called the Neuronal Disco. To some people it’s all about the brain and what’s happening at that level. And to other people it’s more about
how they’re living, how it’s impacting their life. So this is an installation that’s based
on an experiment. It’s called the colour rooms experiment, and the experiment is
meant to study how people with different forms of dementia engage
with colour in space. We would like to encourage more
people, practitioners and researchers to co-create and work together with
people with dementia to produce some incredible art work, music and
provide toolkits to enable that to actually take place. And I think we were also really keen to
show that although our project is inspired by the experiences of people
with dementia it’s not necessarily all about dementia. We feel that the
experiences that these people are telling us about are allowing us
something to observe or study, have implications meaningful for all of us
and that because the arts are all something we should, in my opinion
be doing with people, not to people, they are different forms of activities
that can help you to continue to connect and have a real relationship with people. I don’t think about anything at all when
I’m singing, I just get on with the singing. I’m not thinking about anything, apart from the words and the song. ♪Not very fat, just skin and bone.♪ ♪I love her, she loves me, oh
how happy now we can be.♪ ♪We’re making love underneath
the apple tree.♪

Comment here