The ‘brutality’ of life as a carer looking after someone with dementia is to be explored in a heart-rending new art installation.
Julia Griffin is a Professional Tutor in Dance at Liverpool Hope University.
She’s preparing to launch a new immersive performance installation called I Used To Be, as part of the upcoming Warrington Contemporary Arts Festival.
And the subject material being explored is deeply personal to Julia.
Her mother Christine sadly passed away from vascular dementia in 2018. Her father, Ken, also suffers with the same disease and is nearing the end of his own life.
Now Julia wants to shine a light not just on the individuals struck down with such a debilitating illness, but also on those who are forced to watch their loved ones ebb away.
Julia, based in Whalley Range, Manchester, as well as the Fylde Peninsula, says the immersive video performance is an ‘autobiographical journey through vascular dementia’ and adds: “Both of my parents have succumbed to this terrible, awful disease.
“In my view, quite a lot is written about the people who suffer from dementia but there are few conversations about those who actually care for those people.
“Those that have dementia are sometimes oblivious to their illness. They’re in their own world - and in a way, that’s brilliant, because they can just be where they are.
“But for the carers, they see the brutality of dementia. They see a progressive illness stripping away the identity of someone they love the most.
“This is what I want to talk about with this exhibition. This is my experience as a daughter and as a carer.”
The show, which takes place between 1pm and 9pm on Sat 27th November, is actually the second instalment in a two-part series from Julia.
The first, Demented Dancing Part One: Stuck, came in 2020 and appeared at Hope’s annual Angel Field Festival of the performing arts. It revealed some of Julia’s experiences in losing her mother.
Julia explains: “Mum was initially misdiagnosed with Bell’s palsy in 2007 following recovery from a stroke. Doctors didn’t suspect that anything else was wrong. But for the next 11 years she had vascular dementia, having previously been an extremely fit Swing into Shape fitness teacher.
“Then my dad was cruelly also diagnosed with vascular dementia in 2014. Dad also presents very differently from how my mum did. He’s physically fit but, mentally, things just aren’t working very well at all. We've had some wonderfully funny and loving times together.
“It’s been really hard seeing my parents decline in the way that they have.”
As well as Julia’s own experiences, she’ll also be telling the stories of others who’ve been forced to care for loved ones with cognitive decline.
Those testimonies come from individuals from two support groups called Together Dementia Support and Fabulous Forgetful Friends, both of which look to celebrate the quirks of dementia sufferers rather than isolate them from society.
Julia reveals: “I’ve been collecting carers’ comments in the form of written statements describing how it feels to care for their loved ones. It builds a textual landscape for me as an artist to then work with.”
The installation will feature something called ‘kinetic typography’, which involves a projected image of letters and words tumbling and repeating into space. For Julia, this effect is designed to reflect the fragmented mind of someone with dementia.
She adds: “This particular design is my reflection on my mum. When I first noticed that something wasn’t quite right, she would repeat the same thing, almost a minute after she’d said it, as if her words were physically falling away from her.”
When it comes to what audiences can expect from the installation, Julia encourages guests to really take-in the entire space.
She adds: “The installation is, fundamentally, talking about identity loss. The phrase ‘I used to be’ relates to lots of different things. For example, ‘I used to be really patient before I had to care for my dad’, or ‘I used to be a daughter, now I’m a carer’.
“It’s about saying that identity stripping happens to the person suffering with dementia but also to the person who then has to look after them.
“And it’s important to say at this point that care is so badly funded in the UK. My experience of NHS carers is that they simply don’t have time to do what they need to do, or to engage properly with people who have these needs. Carers are just not equipped to thrive because they’re so undervalued as key workers. In my opinion, that needs to change.”
Away from this current project, Julia has enjoyed a long and varied career working for institutions such as the University of Chester, University of Central Lancashire and Edge Hill University. Chances are you might have seen her dancing in one of the many pop music videos she’s appeared in - including the track Manchester by The Beautiful South and Get Higher by Black Grape.
Speaking about working with legendary Black Grape frontman Shaun Ryder, she laughs: “Let’s just say the boys in the band were really struggling to lip-synch to their own lyrics. You can read into that what you will. But it was a brilliant experience and really funny.”
Meanwhile Julia - who has only recently joined Liverpool HopeUniversity - can’t wait to meet her new students.
She adds: “It’s the energy of the students that I love most about being a tutor. Dance can be prescriptive and also quite judgemental. But, for me, when you have a group of bodies walk into your studio space, they’re all so different and bring their own unique quality of movement.
“At Hope, Dance students also combine their degree with another subject - which makes things even more interesting, because they’ll translate their experiences into movement very differently. That’s what I’m looking forward to the most.”
** I Used To Be is part of the Warrington Contemporary Arts Festival, opening on November 27th 2021, and is located at the empty Marks & Spencers store in Golden Square Warrington. The exhibition begins at 1pm and ends at 9pm.