Sheffield filmmaker premieres documentary to raise dementia awareness

Determined Alzheimer’s Research UK supporter Lee Pearse launches documentary to raise awareness of frontotemporal dementia.

Posted on 6th June 2013

Alzheimer’s Research UK supporter Lee Pearse launches a documentary film this month, entitled My Name is Rod, to raise awareness of frontotemporal dementia. This is the fourth film Lee has written, produced and directed on the subject together with his younger brother Andrew, close friends and fellow filmmakers. It is a tribute to Lee and Andrew’s father who died tragically six weeks after the filming in 2010 and their mother who was diagnosed with frontotemporal dementia at just 59. She now needs 24-hour care.

The premiere of My Name is Rod takes place at 7.30pm on 11 June, at Cineworld in Sheffield. The 60 minute documentary tells the story of Lee and Andrew’s father, a pigeon racer from Bolton, who cared for his wife Val with their two sons. The film captures Rod’s character and love for his wife and unravels the reality of caring for someone as their personality and behaviour changes with frontotemporal dementia.

Lee, 39, lives in Sheffield and is the Youth & Adult Training Partnership Manager at inner city charity Heeley City Farm. Alongside this, he is a writer, filmmaker, carer, advocate and spokesperson for frontotemporal dementia.

Lee talked about the documentary and his reasons for raising awareness of frontotemporal dementia:

“Mum was only 59 when she was diagnosed with this condition but symptoms of this relatively rare form of dementia started when she was 55. Andrew and I helped Dad care for her at home. We were all heartbroken to see the wonderful, vibrant woman we know and love gradually become a shadow of her former self. I 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 Andrew and I filmed our latest documentary, Dad was killed in a road traffic accident. We were devastated but somehow had to keep focused because we had to care for Mum. She needed help with everything, washing, dressing, feeding, it was a round the clock job. In the end we had to face reality – we just couldn’t cope. Thankfully she’s now settled in an excellent care home, Wood Hill Grange.

“Over the 10 years since Mum became ill, I’ve learnt a great deal about her illness 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 am very grateful to the many individuals and organisations that have believed in us and given us support to develop our filmmaking skills. We hope our new documentary will give people an insight into the reality of a family living with frontotemporal dementia and its effects on a far wider network of people.”

Tim Parry, Head of Communications and Public Affairs at Alzheimer’s Research UK, said:

“We are so impressed by Lee’s dedication to raising awareness of the devastating effects of dementia. 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 this condition.

“There are 820,000 people in the UK living with dementia today, including over 6,000 people in Sheffield alone. Frontotemporal dementia is quite rare and although it is thought to account for less than 5% of all dementia cases, it is the second most common cause of dementia in people under the age of 65.

“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 and his brother Andrew that we are able to continue our work.”

The premiere of My Name is Rod takes place at 7.30pm on 11 June, at Cineworld, Valley Centertainment, Broughton Lane, Sheffield S9 2EP. More details about the event are available by contacting Lee Pearse by email at or calling him on 07870 508120. Further information about Alzheimer’s Research UK is available online at or by calling 0300 111 5555.

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