Specialist support for people affected by young-onset dementia

Stockport’s Young and Rarer Dementia Team has been transforming the lives of people affected by young-onset dementia for years. 

For Dianne, talking about their support for her and her husband Paul makes her well up with emotion.

We didn’t realise we were going to get so much help. I do not know where we would have been without them.

Stockport Young and Rarer Dementia Team is part of Pennine Care NHS Foundation Trust.

Its members come from professions including nursing, occupational therapy, social work, and speech and language therapy. Along with support workers, they facilitate groups and visit people at home. 

Ruth Chaplin, the team’s manager, says, ‘We really wanted to get away from the “discharge and signpost on to other agencies” model, because our patients need our specialist knowledge and simply do not fit into what is out there for people with late-onset dementia.’ 

Ongoing contact helps people to stay well, dealing with issues before they turn into crises. She says,

We provide the continuity of care that people deserve to have.

Not alone 

Paul and Dianne moved from Scotland to Stockport to be near their daughter. Paul had started having worrying symptoms and they wanted family support. 

Although they’d suspected dementia, its confirmation was still a shock. Dianne recalls their determination to accept the situation and deal with it together. 

I said to Paul, “When we went in to get your diagnosis, you were walking in there as Paul. When you came back out, you were still Paul. You’re still the same person – this doesn’t change who you are.”

From the outset, contact from one of the team’s community psychiatric nurses, Erika Slater, began to open up a world of support. 

‘After Erika came to the house, we thought, “Well, maybe we’re not as alone as we thought,”’ says Dianne.

Paul and Dianne took a course run by the team called In Two Minds. Apart from giving them strategies to deal with day-to-day challenges, meeting others dealing with a diagnosis was a gamechanger – something that’s continued at regular drop-in sessions. 

Paul says he is normally shy and sometimes has trouble with his hearing. Yet he’s felt able to speak with new people at these groups – supporting others as well as getting support from them. 

Giving it a go 

Sarah, a former GP and teacher, values how the team’s helped her – especially in regular visits following her diagnosis. 

She says, ‘You never expect that you’re going to be in this situation,’ but adds, ‘The services and people supporting you are just second to none. I’ve gone along the line of, if somebody offers me something, I’ll give it a go.’ 

Sarah’s taken up opportunities to draw on her experiences with gusto, on In Two Minds courses and through another organisation, EDUCATE Stockport.

As well as helping others coming to terms with a diagnosis, she’s raising dementia awareness in the wider community. She says,

I’m able to use some of my skills that I’ve still got in talking to other people about what we’re doing. That’s been really helpful for me personally, and hopefully helpful for people that we talk to.

‘I can’t do some of the things I want to do. But, you know, look at the things I’m doing that I never would have done if I hadn’t got involved in the groups. I’m meeting people that I now consider to be friends.’ 

Enjoying life 

At YODEL (young onset dementia enjoying life) – just one of the team’s regular drop-ins – there’s a relaxed and friendly buzz as people chat over tea and biscuits. 

Some are catching up since the previous month’s session, while others have seen each other at more recent activities. 

Judi, who has young-onset dementia, is here with her mum. She’s looking forward to singing in a choir with school students at an upcoming event. 

Judi predicts this afternoon’s seated yoga session will be ‘a bit hilarious’ and she’s proved right.

People laugh and joke while following the instructor’s lead in gentle movement and passing a ball. 

Sara and other carers use the same time to share advice in the next room. 

‘My mum is only 63,’ she says, ‘and these sessions really help with the wellbeing side of things. 

‘If you meet other people living with young-onset dementia who you can relate to, you can accept it and do all you can to be positive.’ 

Jodie McNally, community psychiatric nurse, says, ‘We’re not ever taking away that this is a devastating diagnosis. But we want people to know that, once you know, you have that support and you can still live well. 

It’s not focused on, “What are all the problems?” but, “Here are solutions.”