EMMERDALE villagers have gathered to say goodbye to vicar Ashley Thomas, in the culmination of a very moving dementia storyline.

The Yorkshire soap has won praise for its depiction of dementia - a groundbreaking episode shown through Ashley’s eyes is now a training video used by the Alzheimer’s Society - and it has highlighted how the condition affects someone of working age, with a young family.

Actor John Middleton, who played Ashley for 20 years, had one person in mind when filming his poignant scenes. Philip Carmichael played rugby for Bradford Northern, and was a coach with Keighley Cougars. He was diagnosed with dementia aged 54.

“Philip became the person I had in my mind,” said John. He met Philip through Pathways Breaks, a Bradford-based organisation helping younger people with dementia. John said “every aspect” of Emmerdale’s dementia storyline had come from meeting real people, largely through Pathways. The programme-makers also worked with the Alzheimer’s Society and MHA Care Homes.

“When we met people with dementia we thought of the weight and relevance of the story to them, and the responsibility of telling it accurately,” said John. “My hope is that Emmerdale has at least been able to embed the issue of dementia into the public’s consciousness. We’re all guilty of looking the other way, but we ignore this at our cost. It could well happen to every one of us.”

John visited Pathways Breaks before the dementia storyline began. “He listened to people’s stories. He was very keen to get it right,” says volunteer support worker Clare Mason. "We took some people for a tour of the Emmerdale studio and talked to writers, producers and actors. I was shown scripts from the start and had an input - they took my suggestions on board and made changes to scenes. They didn't just pay lip-service.

“The thing we really wanted was for Ashley’s story to be given time to be tackled properly - we’re pleased it developed over two years. There’s a myth that people have dementia then quickly pass away, but I know people who've lived with it for 15 years. Often there are signs a couple of years before diagnosis, and it's family members who first realise something is wrong, due to changes in behaviour."

When John met Philip, he was struck by the funny, warm moments that arise from dementia. “Philip loves laughing, joking and bursting into song. He was in amateur dramatics and loves to sing," says Clare. "John incorporated that into his performance. Humour is often how people cope with dementia. And music is such a powerful trigger of memories. As Philip’s wife says, life doesn’t end after a diagnosis, but it is different.”

Clare says Emmerdale has been particularly effective in raising awareness of dementia in a younger person, and the impact on family and friends. “The storyline resonated with a lot of our members,” she said. “One lady with dementia, aged 57, has a daughter at university, another has a son doing GCSEs.

“Early onset dementia has massive implications on family life, and on employment and finances. People often have to leave their jobs and sometimes their partner has to give up theirs too, to care for them. I know a taxi driver who, on the day he was diagnosed with dementia, lost his job because he had to give up his driving licence. He had two teenagers, it was devastating.

“Many people with the condition have mortgages, loans, credit cards. Some face the prospect of selling their homes, which is stressful for anyone but when you have dementia it can be extremely confusing and distressing.”

The Alzheimer’s Society says there are 50,000 people in the UK with early onset dementia. Many are in their forties, thirties, even younger. The youngest person Clare has come across was 37, and she knows of someone diagnosed at 22. “Diagnosis rates are really good in Bradford now, but with a younger person it’s not something you’d think about straight away. It’s a case of ruling out other things,” she says.

Run by volunteers, Pathways Breaks organises holidays, social events and a support group and currently helps 30 people with dementia and their families. Breaks are held at Sandybrook pine lodge site in Derbyshire. “Holidays can be difficult for people with dementia, and their carers. People often say they really miss their holidays,” says Clare. “Overseas holidays can be particularly stressful; airports are busy places, and with dementia all the noise and confusion is magnified.

“We take our breaks in term-time, so it’s quieter. We go swimming, cycling, walking, eat meals together. If someone needs to lie down in the afternoon, their carer can still take part in an activity, and spend time with other people.

"We also organise regular social events; we go for meals and pick venues carefully - it’s important that staff are understanding and that the place is well lit with good signage. It makes the world of difference to have a meal out in a supportive, understanding environment, where it doesn’t matter if you knock a drink over. I find it very moving to see the love and support our members give each other.

“We went to Hollywood Bowl recently and the staff were amazing; they showed where the toilets were, helped people in the right direction if they got a bit lost, and brought our food over to us.

“We also have ‘time out’ sessions, giving carers a break. Last year we took a group for afternoon tea, while their partners, who all happened to be men, went to the pub. “

Bi-monthly social events alternate with a support group. “We also have an online support group; sometimes people will post something in the middle of the night, there’s always someone else up. It helps to know you’re not alone," says Clare, a dementia care trainer at the University of Bradford. Through its Dementia Studies department ,which is researching early onset dementia, she trains care home, hospice and hospital staff. “Pathways is involved with that, through our Patient and Public Involvement work. It ensures that people with dementia lead what we do, and help shape the research,” says Clare. “We can only go forward when we know what they want.”

* For more about Pathways Breaks email info@pathwaysbreaks.co.uk or go to Facebook at pathwaysbreaks

* Nine-year-old Alfie Clarke, who plays Ashley and Laurel's son Arthur in Emmerdale, is doing a sponsored swim for the Alzheimer's Society on April 29. The kind-hearted youngster started with a target of £700 and has so far raised nearly £4,000. For more information, or to make a donation, go to justgiving.com/Alfie-Clarke