Sheffield filmmaker made Champion of Alzheimer’s Research UK

Lee Pearse celebrates recognition with moving blog post for the charity

Posted on 15th October 2013

Filmmaker Lee Pearse has been made a Champion of Alzheimer’s Research UK, the UK’s leading dementia research charity. Lee was given the title in recognition of his exceptional support for the charity after his mum Valerie was diagnosed with frontotemporal dementia in 2007, aged just 59. Alzheimer’s Research UK has a small but growing group of 23 Champions – supporters who have gone above and beyond to help the charity in its mission to defeat dementia.

In recognition of being made a Champion of the charity, Lee has contributed a blog post to Alzheimer’s Research UK’s new blog site at www.dementiablog.org/dementia-lifeline

Lee, 40, lives in Sheffield and works at the inner city charity Heeley City Farm. He is the Youth and Adult Training Partnership Manager at the Farm and is developing a dementia department there. Lee is also a writer and filmmaker, an Associate Lecturer at Sheffield Hallam University and has set-up The Valerie Foundation for creativity and dementia support. Since his mum was diagnosed with frontotemporal dementia, Lee has produced a number of films to increase awareness of the subject. In addition, he has helped raise vital funds for Alzheimer’s Research UK and spoken out passionately about his family’s experience through the media.

Earlier this year, Lee launched a documentary entitled My Name is Rod, which he wrote, produced and directed together with support from his younger brother Andrew and two close friends – fellow film producer Ant Graham and cinematographer Leon Lockley. The 60 minute film tells the story of Lee and Andrew’s father, a pigeon racer from Bolton, who cared for his wife Valerie together with their two sons. The film captures Rod’s character and love for Valerie and unravels the reality of caring for someone as their personality and behaviour changes with frontotemporal dementia. The film is a tribute to Lee and Andrew’s father, who died tragically six weeks after the filming in 2010, and their mum who now needs 24-hour care.

Lee talked about his mum and his motivation for supporting Alzheimer’s Research UK:

“The realisation that Mum was ill was gradual. A loving, family focused lady, she started to become detached and loose 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.

“My brother and I helped Dad care for her at home initially. But it was heartbreaking to see Mum slowly become the shadow of the lovely, vibrant woman we knew. I felt furious and frustrated that this was happening to my family and wanted to scream to the world and let everyone know the truth 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 a reality.

“Sadly, six weeks after shooting the documentary our dad was tragically killed in a road traffic accident. Andrew and I were devastated but our first concern had to be for Mum. We told her what had happened but we don’t know if she understood. She needed help with everything by then, washing, dressing, feeding – it was a round the clock job. In the end we had to face reality, we just couldn’t cope. Thankfully, Mum’s now settled in an excellent care home, Wood Hill Grange, and Andrew and I visit her nearly every day.

“I’ve learnt a great deal about Mum’s illness over the years and how the frontal lobes regulate things like personality, emotions, reasoning and decision-making. It’s helped me understand the huge changes in her behaviour. But I still feel distraught about what’s happened to Mum, and angry that there’s not enough funding for research to find new treatments or to support creative work to help raise awareness. I’m proud to be doing something to help defeat dementia and I’m honoured to be made a Champion of Alzheimer’s Research UK.”

Rebecca Wood, Chief Executive of Alzheimer’s Research UK, said:

“We are delighted to make Lee a Champion of Alzheimer’s Research UK – he has shown such enthusiasm in his support for the charity and he truly deserves this honour. Lee is always willing to help us make the case for research and has increased awareness of frontotemporal dementia, which although quite rare is the second most common cause of dementia in people under the age of 65. This is our way of showing our appreciation for Lee’s hard work and dedication.

“Through his innovative filmmaking and by acting as a spokesman for Alzheimer’s Research UK, he is helping to lift the stigma and misunderstanding which still surrounds the many forms of dementia. His efforts to help us raise money and promote research are real assets, helping to bring better forms of diagnosis, preventions, new treatments and a cure ever closer.

“There are hundreds of thousands of people across the UK living with dementia today, including over 6,000 people in Sheffield. Dementia poses one of the greatest threats to public health now and in the future but funding for research still lags far behind other serious diseases. We rely on public donations to fund our crucial research and it’s thanks to the commitment of people like Lee that we are able to continue our pioneering work.”

Further information about Alzheimer’s Research UK is available online at www.alzheimersresearchuk.org or by calling 0300 111 5555.

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