A mum-of-two diagnosed with dementia at the age of just 56 no longer remembers who her children are and has been moved into a care home.
Elaine Deponeo’s heartbroken family believe she was “fobbed off” due to her age, and say her condition was mistaken as depression even though she was showing tell-tale signs of dementia.
Her daughter Leanne, 33, said it feels like she has “lost” her mum, who is now 57, to the condition which has ripped the family apart.
Leanne, who has launched a petition in a bid to remove the age bracket for the illness, started to suspect something wasn’t right when her mum couldn’t remember how to fill in the tax return for her car, the Liverpool Echo reports.
Single mum Elaine, from Ellesmere Port, Cheshire, was 54 at the time. Other troubling signs followed.
While on a family holiday in Thailand, she forgot her way back to the hotel and struggled to order food at a restaurant.
Elaine, who had jobs as a bookmaker and with the NHS, and was joint owner of a taxi firm, saw her GP in August 2017 and was referred for further tests over the following seven months.
She moved into a care home last week.
Leanne, who has made a photo album to help her mum remember things, said: “The moment your mum looks you in the eyes and no longer recognises you it’s just heartbreaking.
“I feel like I’ve lost my mum, I feel like I’m grieving. She’s only 57 – my heart actually hurts.
“But she’s still here as a human and I can still see her so I’m trying to enjoy every aspect of that.
“I just don’t want anyone to go through what we’ve had to go through.”
She added: “Dementia rips your family apart.
“You have to watch the person you love literally fade away right in front of your eyes and for this to happen while fighting for the correct care is utterly heartbreaking.”
It wasn’t until occupational health at her workplace also expressed concerns about the sudden changes in her behaviour that she was referred to a clinical psychologist for further assessment.
Elaine was diagnosed with frontempol dementia in October 2019 “after a two-year fight” to confirm that she had the condition and to get the right care.
Leanne said: “I’d done a lot of research into dementia and I did a lot of charity work when my grandad had it so I had a little inkling that was what it was.
“I spoke to the doctors privately and expressed my concerns. Obviously they couldn’t give any information about my mum but I think they brushed it off because of her age.
“Someone was then sent out from the mental health team to assess her in her own home.
“They delved into her divorce from over 20 years ago and so much stuff that you don’t necessarily want to bring back up and they were adamant that she was depressed.
“I spoke to the social worker afterwards and she told me ‘I needed to get my head out of the clouds, my mum was depressed.’
“Ten months after we first thought that something was wrong she couldn’t draw me a clock and put that it was four o’clock – that’s one of the assessments they ask you to do.
“I’d ask her to pass me the butter in the kitchen and she couldn’t do that.”
She added: “By the time she was diagnosed we’d had an extension and she was already living with us.
“I reduced my hours at work but I wanted one of those days to do my own things and I started to try and get help and support.
“I thought ‘could I find mum an organisation that she could sit and have a chit chat and coffee with people?'”
Leanne struggled to find organisations that could provide support for her mum or groups where she could socialise with those of a similar age.
She added: “People can get diagnosed with early-onset dementia in their 50’s or younger but there was nothing out there for younger people.”
In September last year, as Elaine’s condition deteriorated, she started suffering hallucinations and became increasingly agitated.
It meant her family faced another hurdle due to Elaine’s age, which stopped her from being referred to specialists at the memory clinic for support.
Leanne said: “She was hallucinating up to 20 hours a day so she wasn’t getting any sleep.
“The specialists for dementia work under the older persons team but they only see patients who are 65 and older. If you’re under 65 you’re dealt with under the adult mental health team.