Young people in South Yorkshire left 'isolated and afraid' by parents' dementia
A study at the University of Sheffield's investigated the experiences of young people whose parents have early onset dementia
Experts say young people in South Yorkshire are being left 'isolated and afraid' by early onset dementia in their parents.
A study at the University of Sheffield's investigated the experiences of those whose parents have the disorder - aiming to give them a voice.
The research found many have to put their lives on hold as a result.
Professor Pat Sikes lead the study - she told Hallam it can have a huge impact:
"One of our young people said to us 'Every time I see him, he's the worst he's ever been and the best he'll ever be'. The dementia can go along on a plateau - people can be much the same and then all of a sudden there can be a very, very significant decline.
"And you have to get used to new normals - this is how they are now. And that's very very painful.
"You have certain expectations that your parents are going to parent you - and is somebody you're going to be able to go to for support.
"And that stops happening if your parent's got dementia. People talked about their mum or their dad not going to be a able to be there at their graduation, practically every young woman we spoke to talked about not having their mum avaliable at their wedding, and not being able to talk to their parents about issues and concerns they had."
It's thought there are at least 42,325 people in the UK under 65 living with a variant of young onset dementia.
The study from the University of Sheffield has found many of those living with a parent with dementia don't feel like they have enough support for the situation they're in.
Pat says it can be a very isolating experience:
"One of the things a couple of people asked us to do was to put them in touch with somebody else who was in the same situation because they hadn't met anybody at all who'd had that experience.
"So they're very isolated, very marginalised and they don't feel people understand the sorts of things they're going through.
"They certianly didn't feel that there was much support for them. Things like dementia cafes are generally for older people and it's not really the sort of thing a youngster wants to go along and do. They didn't feel there was the support for them - they didn't feel there was the help."