YoungDementia UK

YoungDementia UK

It’s often thought that only the elderly can get dementia, but Kate Fallows from YoungDementia UK explains that younger people are affected too.

Kate FallowsMore than 40,000 people aged between 30 and 65 in the UK have been diagnosed with ‘working age’ dementia. On average it takes over four years to have the condition confirmed, that’s twice as long as it does for older people.

We caught up with Kate, who is the communications coordinator for the Oxfordshire based charity, to find out how YoungDementia UK is helping thousands of people across the country.

Kate, what’s the definition of young onset dementia?

Dementia is given the term ‘young onset’ when it affects people who are 65 and under.

Here at YoungDementia UK, everything that we’re about is for people who are in this age group at the time of their diagnosis. We feel very strongly that dementia at a younger age is very different than when people are older, and it can affect the individual and their family members much more. The impact is much greater. It affects everything about your life from family to finances, to work and future plans.

Most people aren’t aware that it’s a terminal diagnosis. The message we always try and get out is it can and does affect younger people.

What kind of support can YoungDementia UK give?

We provide face-to-face support for people in Oxfordshire, where we’re based, and the surrounding counties.

At the time of their diagnosis, hopefully people in Oxfordshire are linked into our charity. And when they reach the point in their lives when they wish to have support, we’ll connect them with one of our support workers.

Typically, what does a support worker do?

Usually our support worker will visit once a week for about three hours. They’ll help with whatever the individual needs some extra support with, whether it’s going out and about, keeping up with interests such as hobbies, working out at the gym, trying out new things or staying at home and getting paperwork in order.

We also have young onset dementia advisors who support the whole family, so that could be the person’s children, partner or even their parents who might want emotional and practical advice to help come to terms with the diagnosis. And people often want guidance around planning for the future.

What about social activities?

Every month we offer a variety of about ten group activities and social events like our ‘Supper Club’ where we have live music and food. Young onset dementia can be a very isolating condition, so it’s a great opportunity for people living with dementia to come together and meet other people who are in the same boat.

Quite often people don’t know anyone else in their age group who has the condition too. We’ve found that the peer-to-peer support and sharing of experience and advice is vital for the individual and their family members.

YoungDementia UK websiteThose are the main strands of support we provide in Oxfordshire, for more there’s our leaflet that covers all the things that we do.

Who can get support from YoungDementia UK?

We will help anyone who contacts us. Outside of Oxfordshire, our young onset dementia advisors offer phone and email support to people across the UK.

Our online resources are a way that we can support people who may live in areas where they don’t have connections to local charities or support groups. We’ll help to signpost them to services in their area. Our website, newsletters and social media pages, such as Facebook and Twitter, are a great source of news, information and personal stories.

How can people reach out to YoungDementia UK?

I always encourage people to sign up for our monthly eNewsletter. We share information about events, news, groups, personal stories and research projects – anything really that has a young onset interest or focus, say a link to a film or details about something that’s coming up on TV. We particularly want to help people who may not have day-to-day support, feel a connection to others and have information at their fingertips.

I’d recommend following us on social media as we’re very active, posting information most days on Facebook and Twitter. And of course there’s our website - I think it’s one of the best online resources about young onset dementia in the world.

What other ways can people get help?

Young Dementia Network

Another way to connect with us is to join our YoungDementia Network. We launched this initiative in September 2016 to help link people whose lives are affected by or have an interest in, young onset with others around the country. It’s free to join and as it evolves, there’ll be webinars, events, information sharing and the opportunity to feedback into what’s happening nationally. The Network has more than 800 members and is growing all the time.

As a charity, over half our income comes from fundraising and donations so people can always support us and get involved that way.

Can you tell us what YoungDementia UK are currently working on?

We’re continually working on new ways to help. Something I’m really pleased with is a new guide for GPs we’ve created through the YoungDementia Network.

guide for GPs 

A lot of people think that dementia is only about memory loss, but in younger people it’s common for other factors like vision and mobility to be an issue. In 2016 it took twice as long for younger people to be diagnosed as it did older people, delaying access to treatment and support. So this guide acts a tool for doctors to look out for those symptoms and consider young onset dementia as a possible cause.

It’s in the pilot stages at the moment, and once we’ve collated all the feedback, the final version should be released this autumn.

Finally Kate, what are you most proud of during your time so far at YoungDementia UK?

The launch of our website in March 2014 was a big success for me personally. I add to it all the time and it now contains over 250 pages of young onset specific information. We believe it is the most comprehensive website of tailored information for younger people. We’re often told what an important resource it is by people who often have no other form of support locally.

Also the growth of our social media audience has been really impressive in the last few years. In four years, we’ve gone from under 150 people who liked our Facebook page to more than 4,700 today.

What difference has social media made?

Social media means we’ve been able to connect with many individuals living with young onset or with an interest in it, who we are now collaborating with on a variety of different projects. And we’ve been able to help connect people who may not know anyone else locally affected by young onset.

For me, it’s all about sharing information and helping people live life to the fullest.

YoungDementia UK will turn twenty years old in 2018. You can visit their website, follow on Twitter and Facebook, and sign up for their monthly newsletter.

We're here to help

Go to our Help and support section for tips and advice on making this site easier to use, using our services, understanding impairments, and contacting us. To get in touch right now, use the Email, Chat or BSL links.