SECURITY officer Pete Smith from Leominster was in his fifties when he was diagnosed with dementia.

Valued at work, when he had to leave his job at a Pembridge insulation business colleagues rallied round to raise money for a little known but hugely supportive local charity.

Still in its infancy, Young Dementia Herefordshire is coming out of the shadows, spreading the word about the incidence of dementia among the under 65s. Awareness that this is not just a disease affecting the elderly is key to the group’s message. Every month, members – those diagnosed with dementia and their carers – meet up to share their experiences, offer advice and generally socialise.

A cheque for £2,184 presented to the group by Kevin Duggan from Kingspan, where Pete worked for 14 years, will give a vital boost to Young Dementia Herefordshire whose members will be able to enjoy outings and get-togethers. Making memories is critically important for sufferers, their families and friends.

A spokesman for the group offered sincere thanks to Kingspan. “Being able to have the opportunity to take part in creative sessions and socialise with people in a similar situation has been a fantastic support.”

Phil Morris, whose wife, Hannah was just 39 when she was told she had dementia, praised the Courtyard’s “superb” support. He remembered when the couple received Hannah’s devastating diagnosis. They quickly discovered there was nowhere to turn. While Government funding is focused upon the elderly suffering from dementia, effectively the under 65s find themselves ‘discharged’ from the system.

Elizabeth Stevenson, whose husband, Andy, a former prison officer was diagnosed at the age of 59, fears for young dementia sufferers in Herefordshire. “A clinician told us that there are at least 60 young people in the county diagnosed with dementia,” she said. “They are out there somewhere and our group could offer support. We are struggling because we get no recognition. It’s a time bomb waiting to go off.”

For a time, Young Dementia Herefordshire held monthly meetings in a church hall, but help from the Courtyard in Hereford has come like a huge ray of hope. Every month, co-ordinator Josie Rogerson and Katrin Cross, the Courtyard’s adult participation officer and part of the Creative Ageing Team, greet members of the group and proffer tea, coffee and biscuits in a relaxed and positive atmosphere. There are opportunities for members to express themselves through creativity sessions.

At the last meeting, Katrin thanked Kingspan for the donation to the group. She said the money would be a “huge help” in supporting group events, and hoped this would help raise awareness of living with early onset dementia.

Phil praised the support of Courtyard staff. “We’ve been meeting up here for the last 12 months, sharing our experiences, and this is a positive outlook, not keeping the subject behind closed doors.”

He continued: “Our meetings are very informal, we share any information over a cuppa and check out websites we can look at.” The get-togethers offer an opportunity to pool ideas, such as specially designed clocks which tell the time and time of year, and how to acquire blue badges to ease difficulties with parking.

“Driving licences are taken away as soon as people are diagnosed,” said Phil. “But in some cases, individuals can apply to take a special driving test. “I know one woman who got her licence back, it’s made the world of difference to her.”

Phil’s wife, a warm and bubbly woman who has lived with dementia for five years, relies on her ‘dementia dog’, Poppy, an affectionate two-year-old King Charles spaniel who brightens her day and helps lift the inevitable bouts of gloom. Poppy goes everywhere with her in a bright pink pushchair marked ‘working dog’.

Phil points out that acceptance of dementia in younger sufferers can be a major hurdle for families and relatives.

“What we find is that a lot of people don’t accept the fact that young people have dementia so we find we’re trying to get families on board,” he continued. The group understands that up to 60 younger people are suffering without support in the county. With the reassurance of a regular meeting place at the Courtyard every month, members really want to reach out to them, raising awareness of Young Dementia Herefordshire.

Thanks to the Courtyard’s input, creativity sessions bring members together and ‘reminiscence tools’ help hold on to good memories.

An example of this was a chance to make individually designed coasters.

“We put pictures on our coasters showing what we’d like to remember,” says Phil. Hannah’s choice was four Disney princesses, others opted for subjects such as Abba, space travel or Arsenal. One man selected motor bikes. Says Phil: “Now he can look at his coasters and see how he once went across the United States on a Harley Davidson. It triggers his memory and means the world to him.”

*For more information go to Young Dementia Herefordshire or email

Meetings are held once a month on a Thursday at the Courtyard, Edgar Street, Hereford.

The group can also be found on Facebook.