One year ago Becky Barletta from Hundon was given the crushing news she was one of the youngest people in Britain to have dementia at just 31. Now her family are raising awareness of the devastation it can bring
Having just entered her thirties surrounded by a loving husband and tight-knit family, talented ski instructor and fun-loving newlywed Becky Barletta should have been on the cusp of an exciting decade and making plans for the future.
Instead, the 31-year-old from Suffolk was at Addenbrooke’s Hospital in Cambridge – sat opposite neurologist Dr James Rowe who was about to give her a crushing diagnosis that would change her life forever.
In August 2016 Becky, who lives in Hundon near Sudbury, was told she had the hereditary condition frontotemporal dementia.
She was only 31 – but her family had grown concerned after she started to act inappropriately at work so encouraged her to get checked.
Becky, who moved to Suffolk from Saffron Walden almost 20 years ago, went to the Cambridge Centre for Sixth-form studies.
She was a ski instructor in France for a number of years and tried her hand as a photographer for a few years before that.
But in 2015, in the run up to her wedding to husband Luca, she became obsessive – and those around her grew anxious about her strange behaviour.
Her relatives, which include younger sister Sophie Gilbert and parents Allan and Caroline Sharples, feared she may have inherited a condition which had led to the early death of Becky’s uncle James.
Now, a year on from receiving such devastating news, mother-of-two Sophie and the rest of her family want to raise awareness of the illness.
They are raising money by taking on memory walks across the country to help find a cure – and every penny will go to Alzheimer’s awareness.
But their fight is underpinned by sadness.
Despite only being diagnosed a year ago, Becky – now 32 – is rapidly deteriorating.
A few months ago she was still able to go to the gym independently – now she requires around the clock care by trained medics.
“She is always repeating stories and acts inappropriately, it is heartbreaking to see,” said Sophie.
“There is not much left of our Becky, and it has been devastating for our family.
“Becky was a skiing instructor and a photographer – she lit up a room when she walked in and was always up for a laugh.
“Her colleagues at the ski resort started noticing different changes, she started to speak to clients inappropriately, telling them about what she did the night before and things that were not necessarily appropriate for a working relationship.
“She also started to lose a bit of empathy which wasn’t like Becks at all so my mum took her to Addenbrooke’s for a check up.
“You could see she was starting to lose herself a little bit.”
She added: “Since then she has deteriorated rapidly.
We were all a bit apprehensive particularly as mine and Becks’ uncle had died of the same condition only in his 50s and we were not sure what to expect.
“On August the 24th 2016 we were given the devastating news that she had frontotemporal dementia.
“The doctor said she was one of the youngest he had ever seen with the condition, it has shocked us all to the core.”
Going forward as a family unit has been difficult, particularly as Becky’s future is so uncertain.
According to Sophie, doctors have given her between five to 10 years to live – but because her deterioration has been so rapid, it could be sooner than that.
The 30-year-old said: “I remember when the nurse first saw Becks – she couldn’t see much wrong with her, but compare that to now and she can barely have a proper conversation.
“Everyone is just muddling on, but as a mum I really try to keep that normality for my two children.
“Becky loves them to bits and you can see she does recognise them.
“It’s also nice to be in the countryside in Suffolk which we all adore and Becky is able to go out to Tesco to buy sushi for lunch.
“Luca is a dedicated husband and speaks to Becks every day, he comes home from his skiing instructor job as much as he can, but he has to make ends meet too.”
Over the past year Becky and her family have received support from a number of charities, including the Alzheimer’s Society, and are keen to raise awareness of the illness and research into it.
Sophie added: “For us it’s about raising awareness for other families and to do everything we can to find a cure.
“It is a terrible disease that can tear families apart, but as Becky is living next door we try to keep our little support network.
“We’re taking part in our Memory Walk at our home on September 17.
“It’s our way of trying to help.”
What is frontotemporal dementia?
Poor judgement, a loss of empathy and difficulty speaking are just some of the symptoms of hereditary condition frontotemporal dementia.
As Alzheimer’s Society research officer Tim Shakespeare explains, the illness causes damage to parts of the brain which are responsible for our behaviour, our emotional responses and our language skills.
This type of dementia is less common than other forms such as Alzheimer’s disease and predominantly affects younger people.
He said: “There are more than 42,000 people with young-onset dementia – which is anyone diagnosed under the age of 65 – in the UK.
“Being diagnosed at a younger age is likely to present a different set of challenges – for example the person may still be working, have financial commitments or dependent children.”
He added: “It is great to hear that Sophie, her family and friends are uniting against dementia.”
Almost £6,000 raised via JustGiving
Thousands of pounds have been collected for the Alzheimer’s Society via a crowdfunding page set up by Becky’s family.
They plan to host a Memory Walk at their home in Hundon on September 17, and friends and family have already donated more than £5,500 to make it a success.
Writing on the page, Sophie said: “On August 24th 2016 our beautiful Becky was diagnosed with frontotemporal lobe dementia at 31 years old.
“There is currently no cure or treatment for any dementia or even treatment to stop or slow its progression.
“We need to change this as soon as possible and can only do this through research and raising money to support this research.
“Whilst unfortunately this will not help Becky, we know she would want us to try and halt this vile disease in its tracks for the benefit of the future generations in our family and other families who have been affected by dementia.”
To donate, visit the JustGiving page.
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