A family have been left heartbroken after their mum was diagnosed with dementia at the age of 56 and placed in a care home one year later.
The Cheshire family have shared their devastating experience in a bid to raise awareness of the invisible illness.
It began when Elaine Deponeo, from Ellesmere Port, couldn’t remember how to fill in the tax return for her car, and daughter Leanne Statham knew something wasn’t right.
The single mum-of-two,who was 54 at the time, had worked in “high powered jobs” all her life, as a bookmaker and the joint owner of a taxi firm, before she went on to work for the NHS.
But subtle signs started creeping in that Elaine might be unwell, after she couldn’t remember the way back to the hotel during a family trip to Thailand and struggled to order food at a restaurant.
Leanne, 33, encouraged her mum to go to see her GP back in August 2017 and she was referred for further tests over the following seven months, reports the Liverpool Echo.
Despite showing signs of dementia, Leanne believes Elaine was “fobbed off” due to her age and the condition was mistaken as depression.
Three years later and Elaine, now 57, no longer remembers who her children are anymore and was moved into a care home last week.
Leanne said: “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.”
Leanne has spoken out to raise awareness of dementia and the barriers those under the age of 65 face when trying to get the right diagnosis and care.
She has started an online petition in a bid to remove the age bracket for the illness, which she is encouraging others to sign.
To view the petition click here.
Leanne said: “I’d done a lot of research into dementia and I did a lot of charity work when my granddad 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.”
It wasn’t until occupational health at Elaine’s workplace also expressed their concerns about the sudden changes in her behaviour, that she was referred to a clinical psychologist for further assessment.
In October 2019 “after a two year fight” Elaine was diagnosed with Frontotemporal Dementia but the barriers the family had faced sadly didn’t end there.
Leanne said: “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?'”
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Leanne said she struggled to find any 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 Elaine’s condition began to deteriorate when she started suffering from hallucinations and becoming increasingly agitated.
This meant the family were faced with 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.
“All I ever wanted was for someone to assess her and see if she needed some medication to calm her down and help her sleep and to rule out anything medical that the doctors were saying it could be.”
Elaine was prescribed medication to try and calm her down but when this failed to work she spent the following four weeks in hospital where she was given antipsychotics and doctors decided she needed to be moved into a care home.
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Leanne said: “I feel that the environment of being in hospital wasn’t right, particularly with this type of illness. She was very distressed for four weeks and she spent 10 days in hospital before seeing a psychiatrist.
“I don’t want to blame any individual doctors or nurses and I understand the pressure the NHS is under at the moment. I think she’s been let down by the system.
“If mum was older I would not have had to go through half the fight I’ve been through. I could have walked into a doctors and they probably would have taken a different approach.
“This illness affects everyone. I don’t see why age matters, if it was any other illness it wouldn’t.”
Elaine sadly no longer remembers who her children and other family members are, and Leanne has made a photo album of her life to help with her memories.
She 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.”