About a year ago, Becky Barletta was diagnosed with frontotemporal dementia.
At the age of just 31, the ski instructor based in Suffolk, U.K., became one of the youngest cases of dementia doctors had seen, The Telegraph reports.
Barletta, who is now 32, lives in her parent’s home where she requires 24-hour care, the Cambridge News reports.
Speaking to the paper, Barletta’s sister Sophie Gilbert, said her sister is loved by many.
“I was always so proud of her, so proud to say, ‘My sister is a ski instructor.’ I wasn’t jealous of her but she was like ‘the blonde bombshell’ compared to me,” she said. She also talked about how rapid her sister’s dementia had progressed.
“There is not much of our old Becky left. She repeats the same stories to us and says inappropriate things,” she continued. “I find it hard when we go out, she is off down the street asking people if they can make a funny noise and that sort of thing.”
The family history
Gilbert has also set up a Just Giving page in honour of her sister to raise money for the Alzheimer’s Society in the U.K.
“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,” the page notes.
With a goal of raising £10,000, the fundraiser is more than half way there.
The Telegraph adds Barletta’s uncle, James, died in his 50s with the same condition, and her mother’s cousin also died of the disease in her 40s.
Dementia by the numbers
According to the Alzheimer Society of Canada, there are 564,000 Canadians living with dementia today. This number also includes Alzheimer’s disease, which is the most common form of dementia.
Each year, more than 25,000 Canadians are diagnosed, and in the next 15 years, experts say close to one million Canadians will have the disease. And while Barletta’s case is quite rare, there are 16,000 Canadians under the age of 65 who live with dementia — in the medical world, this is classified as “young onset” dementia.
And while there is no known cure or effective treatments for dementia, the Society adds there are ways to reduce your risk: exercise regularly, eat healthy and manage your cardiovascular health. And always, continue challenging your brain.
Barletta’s specific type of dementia, frontotemporal dementia, is a form that affects the frontal and temporal lobes of the brain, says Mary Schulz, director of education for the Alzheimer Society of Canada.
“This is a different part of the brain than Alzheimer’s,” she tells Global News. “This is the part of the brain that affects personality, behaviour, language and emotional changes.” She adds people with this type of dementia have a change in their movement, motor skills and often, are not able to distinguish what is appropriate and what is not.
“This is a difficult form of dementia to have because the behaviour is very upsetting, out of character and it is often embarrassing.”
And while these cases, again, are very rare, Schulz says it is important to notice people’s change in behaviour. “The brain is such a complex organ,” she says. “If you tap out of that [part] that controls movement, your movement is going to be impaired. If someone is behaving oddly, don’t assume it’s not a physical illness.”
When a loved one gets diagnosed
Tami Reeves, nurse and author of Bleeding Hearts: A True Story of Alzheimer’s, Family, and the Other Woman, says the family of the person with dementia is often the invisible victim.
“While each member of the family has to deal with how and when to say goodbye to their loved one, they too have needs to be met during this horrendous time,” she tells Global News. “They need to feel free to move in their life without fear of shame. All the while keeping the victim’s quality of life the best it can be and giving them dignity and respect.”
And when you are with someone who has dementia, at whatever age, Reeves says it is important to not argue with them. “Arguing just causes anxiousness and that’s the last thing a person with any type of dementia needs,” she says.
“Empathy is key,” she adds. “Supporting that person’s decision(s) in the care of the loved one or even in their own personal life is the best way to support them.”