A dementia lifeline


By Lee Pearse | Tuesday 15 October 2013

My mum Valerie was diagnosed with frontotemporal dementia in 2007, aged just 59. People often don’t have a choice about the dementia world; you’re suddenly in it and your life changes rapidly. It‘s incredibly important that we all talk and support one another.

I set up The Valerie Foundation in honour of my mum, for developing creative projects, with a local, regional and national impact. Our focus is to support families and work closely with communities for the greater good of those living with dementia. We’re doing this by educating people about the condition and creating innovative respite activities that can make a real difference to people’s quality of life.

As a film maker, I truly believe that the dementia world, researchers, carers and the public can be brought closer together through the creative arts and these therapeutic and environmental opportunities can sometimes be a lifeline in living with dementia.

My Name is Rod

I’ve made a number of films to raise awareness about frontotemporal dementia. My latest production is a 60 minute documentary entitled My Name is Rod, made with the dedication and support of two good friends; Ant Graham, a film producer and Leon Lockley, a cinematographer. They’re advocates for dementia in their own right and I am forever thankful for their help.

It’s a self-funded feature documentary that follows my dad Rod, a pigeon racer from Bolton. He cared for Mum and the film shows the reality of how he coped as her personality and behaviour changed as dementia took hold. It’s a tribute to him, as he died tragically in a road traffic accident six weeks after the filming in 2010. It’s also a tribute to Mum who now needs 24-hour care.

When Dad died, my younger brother Andrew and I were devastated, but our first concern had to be for Mum. We told her what happened but we don’t know if she understood. She needed help with everything by then; washing, dressing, feeding – it was a 24-hour job. We had to face the reality that we just couldn’t cope. Thankfully Mum’s now settled in an excellent care home and we visit her every day.

A shadow of her former self

It has been heartbreaking seeing Mum slowly become the shadow of the lovely, vibrant lady we knew. The realisation that she was ill was gradual. A loving, family-focused lady, she started to become detached and lose empathy. She forgot my brother’s birthday, which was most out of character, and when I rang her excitedly to tell her I’d bought my first house, she just said, ’oh’. Mum had a history of depression and at first we thought that might be the problem, but her behaviour became increasingly erratic – she attempted to reverse on the motorway, drove on the pavement and lost her job.

At times I’ve felt furious this has happened to our family and wanted to scream to the world and let everyone know about frontotemporal dementia.

At times I’ve felt furious and frustrated this has happened to our family and wanted to scream to the world and let everyone know about frontotemporal dementia. I realised I could do that through film and with the endorsement of Alzheimer’s Research UK, I set about turning that idea into reality.

I‘ve worked hard as a volunteer for ten years to raise awareness of all issues relating to dementia and I’m pleased that my efforts have gained regional and national recognition. As a result I’ve been involved in the Sheffield Dementia Alliance Steering group and gained the support and trust of hundreds of carers, leading neurologists, other filmmakers and Alzheimer’s Research UK. I’m now busy developing a range of creative projects and I’m applying for funding to deliver them.

I still feel distraught about what’s happened to Mum. And angry that there’s not enough funding for research to find the new treatments so desperately needed. I’m proud to support Alzheimer’s Research UK and I hope more people will join me in doing so – research is the only way we can get to the root of the problem.

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About the author

Lee Pearse

Lee Pearse is 40-years-old, lives in Sheffield and is a Youth and Adult Training Partnership Manager at the charity Heeley City Farm. He’s also a writer, filmmaker and Associate Lecturer at Sheffield Hallam University. Lee volunteers for dementia awareness and set up the Valerie Foundation, dedicated to providing creative projects and respite opportunities for people affected by dementia. He has recently been made a Champion of Alzheimer’s Research UK in recognition of his exceptional support for the charity.