4 minute read
Making new memories
A dementia diagnosis can come as a shock, altering people’s sense of identity and future. Things that once came easy to them are now a real challenge.
Young onset dementia refers to anyone diagnosed with the condition before the age of 65. This can place immense emotional and practical strain on those diagnosed and their loved ones as they navigate the challenges of a condition typically associated with older adults.
A Mersey Care group for people with young onset dementia provides a safe space for service users and their carers.
Set up three years ago by nurse Cherylnn Harper, the group meets once a month, hears from guest speakers from relevant organisations and takes part in activities, such as quizzes, memory and mobility games. Cherylnn explains:
“Everyone’s battling a different storm and for those affected by young onset dementia, there isn’t a lot of support out there."
“We invite service users along to the group after they receive their diagnosis and are referred to our dementia service.
“The group brings people together and offers a space where they can share their experiences and gain support from one another.”
Key to the success of the group are dementia care navigators, often described as ‘life lines’, who help service users and their carers get the right support. They play a crucial role in helping them manage the condition, navigate the health care system and deal with any queries they may have.
Tom, 63, (pictured above with wife Marion and their dog Ollie) was diagnosed with young onset dementia seven years ago.
“I was a Petty Officer in the Royal Navy. I became really emotional and isolated myself from colleagues. I was crying all the time and was severely depressed.”
Marion explains how his personality completely changed, which impacted their relationship as he became childlike and aggressive.
“Tom’s condition took over our lives, it’s all we thought and talked about.”
After Tom’s diagnosis, he and his wife Marion found support at the Young Onset Dementia group.
“I’d blame Marion if I couldn’t find something or if things went wrong,” explains Tom. “Once I had my diagnosis, I was relieved – I knew what was wrong and that something could be done about it.”
Tom and Marion joined the group 18 months ago.
Tom explains, “I’ve tried other groups before but they’re aimed at older people. I couldn’t connect to them and felt like I was looking at my future. That’s why I’m so grateful for this group – I’ve made great friends and feel less alone.” Seven years later, the couple still go on holidays and Tom cleans in a pub.
“Our relationship has also improved, we’ve become much closer,” says Marion. “We’d drifted apart because of Tom’s aggression, there was a time I didn’t know how long I could put up with it for. You tend only to see only people dying with dementia but after seven years Tom is proof you can not only live with it but live well with it.”
Living well with dementia
Check out this video of service user, Tommy Dunne BEM, who was diagnosed with dementia in 2012.
Living with Dementia by Tommy Dunne BEM, service user.
He remains a keen golfer and works closely with groups to ensure those newly diagnosed don’t regard it as the end of their lives.
How you can offer support
Become a Dementia Friend to raise awareness and help eradicate the stigma surrounding dementia: dementiafriends.org.uk
Resources for carers
Admiral Nurses work with families and carers of people with dementia to help them cope with the pressures of caring for someone with dementia. Admiral nursing service for people living in Halton and Knowsley
TIDE (Together in Dementia Everyday) connects and enables carers of people with dementia to use their experience to influence change: tide.uk.net
