'I got dementia in my 50s - it's changed my entire personality for the worse'
A mum who thought she had a brain tumour after she went from laidback to aggressive was told she has early-onset dementia aged 50 and won't live to see her 60s. Jana Nelson, 53, first noticed symptoms in 2017, after friends and family pointed out her personality had changed.
She was repeating the same questions and sentences and thinking she'd just become forgetful. She also felt like she couldn't keep her balance when walking, was having trouble making decisions, and suffered from severe mood swings. Her counsellor recommended she go for neurological tests - believing she could be suffering from MS, or a brain tumour.
But an MRI scan revealed she was suffering from stage five dementia - and would eventually need round-the-clock care. While there isn't any history of dementia in Jana's family - she was diagnosed with foetal alcohol syndrome in 2013, which doctors say played a major part in her health decline.
Mum-of-two Jana, who is no longer able to work, from Idaho Falls, Idaho, US, said: “You think you’d know when something was really wrong - but I didn’t realise things were bad to this extent. I was really devastated. My doctor doesn’t see me living into my sixties and eventually I’m going to need round-the-clock care at home.
“The symptoms and tests were so scary - I’m a college-educated businesswoman, why couldn’t I do simple maths problems and name different colours? Before her diagnosis, Jana described herself as a “very knowledgeable person” who was quick-witted, decisive and spoke her mind.
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She was confident in her abilities, studied psychology at degree-level, and ran a business managing MMA fighters. But in 2017, she slowly began experiencing a series of symptoms which prompted her husband, Kenny, 55, nuclear reactor supervisor, and her counsellor, to encourage her to see a doctor.
She said: “I had so much trouble regulating my emotions - I’d become so furious over things I usually wouldn’t be angry about, like people correcting me if I said something wrong. It also became really hard for me to calm down if I had a mood swing - which really wasn’t normal for me.
“I couldn’t keep my balance, and also began to really struggle with problem-solving. I just knew something was wrong.” Jana - who is mum to a daughter and son - referred herself to the hospital, where she was given two days of intensive neurological tests.
She was told to solve number problems, remember flashing light patterns and name different colours - and quickly became frustrated and scared after not being able to complete them as well as she thought she would. Her doctor also gave her an MRI - hoping any issues would show up on the scan.
“The tests brought me to tears on both days,” Jana said. “It was so demoralising and devastating, I was scared because I knew something was wrong. There were so many different things - there were little pegboards where you’d have to take a key and fit it into the correctly shaped hole, and you’d have to do it as quickly as you could.
“Then they put me in front of a computer, there were all these colours and words flashing and you’d have to remember the pattern. I couldn’t even work out how to do the numerical patterns - like, ‘you have five dollars and you spend two dollars fifty - how much have you got left?’.
“I couldn’t draw a clock face and I struggled to write out a cheque. It made me feel stupid and really confused - I knew something was wrong but I didn’t realise the extent of it until then.” Jana’s doctor asked her to come back to the hospital with Kenny and her daughter and she was told her MRI and tests indicated she was suffering from stage four dementia.
She was told it's unlikely she’ll live beyond her early sixties. She said: “I thought 'OK, it’s dementia - but surely it must only be in the early stages'. But it wasn’t, I have advanced dementia and a prognosis of 10 years to live. The doctor even said she was surprised I was functioning as well as I was, and she’s seen people with worse symptoms at earlier stages of dementia.”
Her symptoms have continued to progress and she is now experiencing speech issues, with a "very limited vocabulary". The condition has now progressed to stage five - which typically includes symptoms like disorientation, pronounced memory loss and ‘Sundown syndrome’ - which means confusion that worsens in the night.
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Feeling isolated, Jana began researching community groups for people with dementia - but she could only find elderly people with Alzheimer’s, and struggled to find people with early-onset dementia. She began documenting her decline on TikTok - and has since found a number of middle-aged people suffering from similar types of dementia.
Through this, she has found a group of friends and uses their experiences as a “roadmap” of what to expect from herself. She added: “My therapist recommended I start my own TikTok - I didn’t want anyone else to feel as isolated as I did at the time. It’s really rewarding to know there’s people out there who need the same guidance I need. It’s really nice that they just understand - and I don’t have to explain myself.”
Up until now Jana has only needed in-house care if she’s injured or ill - but doctors believe she’ll need full-time care within the next year. She said: “My doctors’ recommendations have been to look into resources for in-home care, and it’s probably going to happen within the next year. We know which company we’re going to have now - so that’s ready to go as soon as I need it.”
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