“You’re very much left alone. We’re so lucky to have Dementia Forward”

With experience of caring for her mum who has advanced dementia, Trish recognised small signs of the condition in her husband, Mike, in 2020 when he was in his early 60s.

“Mike had recently retired, and we were looking after my parents and socially isolating due to the COVID-19 pandemic. At first, it was hard to tell if there was something wrong. I wasn’t sure if Mike’s change in behaviour was because he had lost his sense of purpose, or whether it was the effect of lockdown. He also has profound hearing loss that had a significant impact and knocked his confidence,” said Trish.

Diagnosis

As time went on, Mike’s symptoms deteriorated and an official diagnosis of Alzheimer’s disease – a form of dementia - was given earlier this year. Due to Mike’s age when the symptoms started, he’s classed as having young onset dementia.

The rare illness affects people between 30 to 65, and approximately 7.5% of the estimated 944,000 people living with dementia in the UK are thought to have young onset dementia*.

Poor short-term memory and perception of time, difficulty thinking things through and planning are just a few of the symptoms Mike is challenged with on a daily basis due to the disease. He’s now unable to undertake activities he once enjoyed doing without prompting and support, and this has taken a toll on his mental wellbeing.

Rare support

Thankfully, Trish knew of the local charity Dementia Forward and got in touch with them shortly after Mike’s diagnosis to find out what support might be available. Age-appropriate services for people like Mike can be difficult to come by, but thanks to a recently awarded National Lottery grant of almost £240,000, Dementia Forward is able to provide a weekly dedicated young onset dementia support group, Time Out Together, of which he is now a regular member.

The group operates in Scarborough, York and Harrogate and is thought to be unique as other services available in the area are often designed for older people.

Every Wednesday, Time Out Together takes Mike and others living with young onset dementia on days out and to different activities for free. In the past this has included visiting nature reserves, Yorkshire Lavender, stately homes and gardens, museums and galleries. The group has also participated in physical activities such as table tennis, crown green bowling and golf, which Mike particularly likes.

Enhancing mental wellbeing

Trish said: “Time Out Together brings a lovely bunch of people together who are in Mike’s situation. This makes him feel comfortable and less self-conscious about his illness - he doesn’t feel like the odd one out. It’s given him routine and it’s been great for his confidence and self-esteem. He’s doing things he wouldn’t normally be able to do and financially we wouldn’t be able to afford these activities if it weren’t for Dementia Forward and National Lottery funding.”

Mike said: “I want to stay active and keep doing as much as I can. I’ve been made very welcome since joining the Time Out Together group. Everyone is very friendly and I look forward to our adventures together. We have a great time and we have a laugh. The camaraderie among the group is fantastic.”

Peer support and physical and mental wellbeing activities are believed to be important in helping to reduce the progression of dementia and can help patients avoid going into full time care for as long as possible. For many young people, this is important as they are still raising families and working to provide financial stability and support.

Thanks to National Lottery players, Dementia Forward is able to continue working closely with care homes and agencies to adapt services for younger people, educate care staff and raise awareness of the illness.

“Support for those with the condition and their loved ones is so underfunded. You’re very much left on your own. We’re lucky to have Dementia Forward to help and support us – getting this grant is wonderful and is so deserved,” said Trish.

While the days out for Mike provides Trish with some respite, it’s more the reassurance that he’s in a safe pair of hands when he’s with the Time Out Together group that puts her at ease.

Peace of mind

Trish said: “I don’t have to worry about him when he’s at the group. I try not to be too protective but if someone you love has dementia, you just can’t help it. I don’t feel like that when he goes on a Wednesday; I don’t give it a second thought.”

National Lottery players raise over £30 million a week for good causes across the UK. Thanks to them, last year The National Lottery Community Fund was able to distribute over half a billion pounds (£615.4 million) of life-changing funding to communities.

*Dementia UK