Dementia Awareness Week: Harrogate charity Dementia Forward on young onset dementia

“We’re working with hope, we want people to live as well as possible,” said Jill Quinn, founder and chief executive of Dementia Forward, who are based in Harrogate, but work across the whole of North Yorkshire.

Today marks the start of Dementia Action Week in the United Kingdom, which brings people together to try and improve dementia diagnosis rates. Jill and Dementia Forward are at the heart of offering support services to families and this week they are keen to shine the light on those who suffer from the disease earlier than perhaps is expected.

“Young onset dementia is when you experience those symptoms before the age of 65. In our experience the majority of people who we support are in their early 50s. Some people who are in their 40s we have on our books as well,” she said.

“Unfortunately it is like an invisible condition because the data isn’t good. We don’t code it very well. For that reason there isn’t a separate funding stream for young onset dementia, so what people find is they are shoehorned into older people’s services. We recognise that and we think it is very uncomfortable.

“We have provided outward bound day services for a long time, but what we realised is that we were looking after people in the moment when they can attend those day services, but there was a cliff edge after that. What happens next?

“There was no age appropriate care and people were really struggling with the financial burden of it – employment, mortgages, being responsible for a family, still being physically active and then just being offered a place in an old people’s home. It jars.”

Eighteen months ago, Dementia Forward launched the U&ME Campaign with the support of Peter Deaman from Lateral Consultancy, whose close friend of nearly 40 years, Jonathan Beardsworth, is living with young onset dementia. Jonathan, now aged 65, has his birthday on October 24, which is now marked annually as national Young Onset Dementia Awareness Day.

Last year a song was released on Jonathan’s birthday which was written and performed by Yorkshire songwriter Scott Quinn. This year a remix of the single will be released as the charity hosts its second annual Young Onset Dementia Conference.

Jill said the success of the U&Me campaign has thrust the charity to the forefront of providing better services for this who suffer with young onset dementia.

“What we have done is to try to be the A to Z. We realise that when we launched our U&ME campaign that it was pointless dealing with just one part of it. So we are campaigning for better diagnosis, we want better services in those early stages with better advice and information. We also want to look at the end stage – where do people receive appropriate care?

“We have said we’ll look at the whole thing but in doing so we have taken the lid of this can of worms and we have been inundated with people needing support. We now need to work with partners – train care homes so they understand it.

“Dementia Forward with our campaign has been successful but it has landed us in the mire as we are now being pulled in all sorts of directions. But it’s ok, we knew we had to make a mess!

“We’re developing a model that is proving successful but we don’t want to grow outside of North Yorkshire. We’re really willing to share our model, though. We had our first conference last May that went down well and we have had calls from across the country. We hope people will learn from our experiences.”

The charity is already working with The Manor at St Catherine’s Care Home in York in what Jill describes as “the dream” environment. But already the initial eight bed spaces have been taken up and four more quickly added.

Jill said the complexities of working with people with young onset dementia mean it has to be treated as a disease in its own right. “With young onset dementia I almost wish we didn’t call it dementia because it’s like a different disease, it progresses differently and it hits people before their ageing – it isn’t a natural part of ageing,” she explained.

“The saddest part of young onset is that the person is right in the thick of the peak of their lives. They are working towards retirement, they have a social life because they have time for it, they have the mortgage to finish off, and they’re in employment but they don’t get the help they need and their job goes wrong and they get sacked. We have seen that repeatedly.

“If they are diagnosed the difference is that they would walk away from their job with their head held high and their dignity intact.”

With this week all about awareness people should consider their symptoms.

Jill said: “It is a level of confusion that is interfering with everyday life. An example may be forgetting how to use the TV remote control, or forgetting how to bake your favourite chocolate cake that you have been doing for 30 years.

“A feeling that people can maybe relate to is when you’ve parked your car in a large car park and can’t remember where it is, but a dementia symptom is now this is occurring in familiar situations. At work you may forget how to log on to a computer, something that you’d do every day.

“We support people pre-diagnosis so you can ring our helpline but a GP is usually the first call."

For more information visit dementiaforward.org.uk