By Helen Briggs
When Louise was three, her mother Zoe, who was then 29, was diagnosed with dementia. She is now 42, and living in a care home unable to walk or talk.
Zoe is one of the 17,000 people in the UK living with “early-onset dementia”, which is defined as cases diagnosed before the age of 65.
For Zoe’s family, the first signs something was wrong came when Louise and her sister were on holiday with their grandmother.
While they were away, another relative noticed Zoe – clearly confused – out in the park searching for her children.
Louise’s grandmother, Julie, says she still misses the everyday moments she can no longer share with her daughter – going shopping or a day at the beach.
“It’s one of the worst diseases going,” she says. “It’s all been wiped away.”
After being in and out of hospital for some time, Zoe was eventually diagnosed with early onset dementia.
Doctors could not say why it had happened to someone so young.
“Right at the outset, when she was first diagnosed, they said unfortunately sometimes these things happen,” says Julie.
“They’re like a one-off and Zoe’s the one-off.”
Zoe managed to live with her daughters at the start of her illness, but soon became too ill to cope.
She now lives in a care home in Ashford, and is on a special early onset ward, where she is by far the youngest person.
Louise was only a baby when Zoe became ill, so has few memories of living with her mother.
But she now raises funds for the Alzheimer’s Society, and recently took part in one of the charity’s Memory Walks. She hopes research will help prevent the same thing happening to another family.
“I can’t help my mum now it’s too late – there’s nothing anybody can do to help her. But if it means I can help other people then it’s worth it.
“It’s also to raise awareness. When I meet new people and I tell them how my life is, and I explain my mum’s got dementia, no-one I’ve met has ever really known what it is and how it affects people.”
The family is also having to cope with dementia striking again.
Julie’s mother Ruby, 85, was found to have Alzheimer’s five years ago, and is now in a care home.
She was diagnosed after slipping out of the house at night and walking several miles along the local canal.
Julie – who has therefore seen both her daughter and her mother battle the disease – now focuses on supporting her granddaughters.
“The miracle we’ve been waiting for, hoping to happen hasn’t happened,” says Julie.
“When the girls were little and asking, ‘Why is mum ill and when will she get better?’ we just had to say, ‘We’re hoping for a miracle’.
“We haven’t got our miracle, so perhaps we can help in other ways.”
Early onset dementia
People diagnosed with dementia under the age of 65 are often described as ‘younger people with dementia’ by health and social care professionals
Other terms used include ‘early onset dementia’, ‘young-onset dementia’, and ‘working age dementia’
In the UK, an estimated 17,000 people under the age of 65 are living with dementia
This number is likely to be an under-estimate, and the true figure may be up to three times higher
To be diagnosed at a young age is very rare
Getting an accurate diagnosis of dementia can take a long time for younger people, often due to lack of awareness that dementia can happen in younger people
Anyone worried about any problems with memory, at any age, should consult their GP
Source: Alzheimer’s Society