Family rocked by diagnosis that sparked a son’s crusade

IT was 10 years ago when Lee Pearse first started to worry about his mother, Valerie.

She was only in her mid 50s at the time and the realisation that she was ill crept up on him and his family slowly. “It sounds like a cliché but she really was a kind, loving person. She was family focused and sociable,” says Lee.

But then her behaviour started to become unpredictable. “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.”

Lee, along with his brother, Andrew, and their father Rod, became increasingly concerned as initially doctors were unable to pinpoint the problem. Eventually she was diagnosed with vascular dementia – where parts of the brain die as they’re starved of oxygen caused by arteries becoming blocked – at the age of 59.

“Up to that point Dad, Andrew and myself had been in a bit of a spin because we didn’t know what was going on.” The doctors, however, had got it wrong and eight months later she was re-diagnosed with frontotemporal dementia, which affects the front of the brain and is the second most common cause of dementia in people under 65.

The news rocked the family. “It tore us apart as a family unit. “We were thrown into this world of dementia and we became front- line carers in this world we knew very little about.”

Initially he and his brother helped their father care for her at home. But watching the person they knew slowly disappear has been traumatic. “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,” he says.

Lee, 40, lives in Sheffield and works as the youth and adult training partnership manager at Heeley City Farm, an inner-city charity that helps give opportunities to young people. He’s also a filmmaker and an associate lecturer at Sheffield Hallam University and decided to put his filmmaking skills to good use, producing a number of films to increase awareness of dementia.

He’s also set up The Valerie Foundation for dementia support, helped to raise funds for Alzheimer’s Research UK and spoken out about his family’s experience. Last week he was made a Champion of Alzheimer’s Research UK, the country’s leading dementia research charity, in recognition for the work he’s doing.

Lee is one of a small but growing group of 23 “champions” and Rebecca Wood, chief executive of Alzheimer’s Research UK, says the tireless efforts of people like him are making a difference in the fight to defeat dementia.

“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.”

Nevertheless, the challenge is a daunting one. For although dementia poses one of the greatest threats to public health, funding for research still lags far behind other serious diseases.

We may be living longer these days but for many this longevity comes at a cruel price and dementia hangs like a spectre over many families, with warnings that one person in five will have some degree of dementia by the time they’re 80.

According to the Alzheimer’s Society there are around 800,000 people with the disease in the UK, with numbers set to rise to more than a million by 2021.

All of which makes for sobering reading. But although it remains a terminal condition it is believed that delaying the onset of dementia by five years would halve the number of deaths from the condition, saving 30,000 lives a year.

For Lee, being thrust into the “terrifying” world of dementia has turned his family’s life on its head but calls his younger brother a “hero” for the way he’s coped with the situation. “For the last 10 years we’ve been caring for my Mum, you stop becoming a son and you become a full-time carer,” he says.

Earlier this year, he launched a documentary called My Name is Rod, which he wrote, produced and directed together with support from his brother and two close friends – fellow film producer Ant Graham and cinematographer Leon Lockley.

The 60 minute film tells the story of their father, a pigeon racer from Bolton, who cared for Valerie. It captures Rod’s character and his love for his wife and highlights the reality of caring for someone as their personality and behaviour changes with frontotemporal dementia.

The film is a tribute to his father, who died tragically six weeks after the filming in 2010, and their mother who now needs 24-hour care. “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.”

It’s a heart-wrenching story and it’s been a fraught experience for Lee and his family. “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,” he says.

“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.”

He believes that as a society we have to address the practical concerns faced by ordinary people whose loved ones have been struck down by dementia. “We need to accept that dementia is here, that it’s hideous and that it’s becoming a way of life for many people.

“But we also need to start talking about it in our communities, we need frontline carers and scientists to help create a foundation of understanding so that people know what to do when they’re thrown into the thick of it.

“There will be people behind closed doors who are going through hell because it’s very lonely and it can have a catastrophic impact,” he says. “We were able to help Dad but I dread to think what would have happened if we hadn’t been around.”

The life expectancy of someone with Valerie’s form of dementia is around eight to 10 years and Lee says she is now entering the latter stages of the disease. “She had limited speech and she kept repeating the phrase ‘I don’t know’ over and over, but she’s not spoken for four years now.”

His mother is now being looked after in a care home and he is full of praise for the support she receives. “Thankfully, Mum’s now settled and Andrew and I visit her two or three times a week, on evenings and at weekends. We’re not sure if she still recognises us but we think seeing us gives her some comfort.”

Dementia has irrevocably changed Lee’s life, and that of his family, which is why he’s determined to help tackle this dreadful and debilitating disease. “It’s become a bit of a mission to raise awareness about this and it probably will be for the rest of my life.”

For more information about Alzheimer’s Research UK visit www.alzheimersresearchuk.org or call 0300 111 5555. To read Lee’s blog visit Alzheimer’s Research UK’s new blog site at www.dementiablog.org/dementia-lifeline