A mother who experienced a sudden personality change in her late 40s was diagnosed with early-onset dementia.
Family and friends knew something was wrong when the famously laid-back Jana Nelson became short-tempered and began experiencing extreme mood swings in 2017.
The mother of two, from Idaho, had suddenly become unsteady on her feet and started repeating herself. It was recommended that she undergo brain testing because she was concerned she might have MS.
But an MRI scan revealed she had dementia at the age of 50 – despite no family history of the disease – and she was told she would probably not live to be 60.
Family and friends knew something was wrong when the famously laid-back Jana Nelson (left and right, after brain surgery for a different condition in 2013) became short-tempered and began experiencing extreme mood swings
Mrs Nelson, who can no longer work, said: ‘You think you know when something is really wrong, but I didn’t realize it was that bad. I was really devastated.
‘My doctor doesn’t see me living into my 60s and eventually I will need 24-hour care at home.
‘The symptoms and tests were so scary. I’m a college-educated businesswoman, why couldn’t I solve simple math problems and name different colors?’
Dementia that occurs before age 65 accounts for only about 3 percent of dementia cases, but the memory-robbing disorder is devastating
Before her diagnosis, Ms Nelson described herself as a ‘very knowledgeable person’ who was quick-witted, decisive and spoke her mind.
Confident in her abilities, she studied psychology at the university level and ran a company that managed MMA fighters.
But in 2017, she slowly began experiencing a series of symptoms that prompted her husband, Kenny, 55, a nuclear reactor supervisor, and her counselor to encourage her to see a doctor.
She said: ‘I had so much trouble regulating my emotions – I would get so angry about things I wouldn’t normally be angry about, like people correcting me when I said the wrong thing.
Mrs. Nelson with husband Kenny and her son
‘It also became very difficult for me to calm down when I had a mood swing – which really wasn’t normal for me.
‘I couldn’t keep my balance and really started to have trouble solving problems. I just knew something was wrong.”
Although there was no family history of dementia, Ms Nelson was believed to be at risk of future health problems as she was diagnosed with fetal alcohol syndrome in 2013.
This condition is caused when a baby is exposed to alcohol in the womb and although the long-term effects are still being researched, it is thought to increase the risk of chronic health problems for numerous reasons.
Following her family’s feedback, Ms Nelson – who is mother to a daughter and son – referred herself to hospital, where she underwent two days of intensive neurological tests.
She was told to solve number problems, memorize blinking light patterns and name different colors – and quickly became frustrated and scared after she couldn’t complete them as well as she thought she would.
Her doctor also gave her an MRI, hoping that any problems would show up on the scan.
“The tests brought me to tears on both days,” Ms Nelson said. ‘It was so demoralizing and devastating, I was scared because I knew something was wrong.
“There were so many different things: there were little pegboards where you had to take a key and put it in the correctly shaped hole, and you had to do that as quickly as possible.
‘Then they put me in front of a computer, all these colors and words flashed and you had to remember the pattern.
“I didn’t even know how to make the numerical patterns, like, ‘You have five dollars and you spend two dollars and fifty, how much do you have left?’
‘I couldn’t draw a clock face and had trouble writing a check.
‘I felt stupid and very confused. I knew something was wrong but didn’t realize the extent of it until then.’
Ms Nelson’s doctor asked her to come back to hospital with Kenny and her daughter, 20, and she was told her MRI and tests indicated she was suffering from stage four dementia.
She was told she was unlikely to live past her early 60s.
She said: ‘I thought, ‘Okay, it’s dementia, but I’m sure it’s only in the early stages.’
‘But that was not the case, I have advanced dementia and a prognosis of ten years to live.
“The doctor even said she was surprised I was functioning so well, and that she has seen people with worse symptoms in earlier stages of dementia.”
Her symptoms have continued to worsen and she now experiences speech problems, with a ‘very limited vocabulary’.
The condition has now progressed to stage five – which typically includes symptoms such as disorientation, marked memory loss and ‘Sundown syndrome’ – meaning confusion worsens at night.
Until now, Jana has only needed home care when she was injured or sick, but doctors think she will need full-time care within a year
Feeling isolated, Ms Nelson began researching community groups for people with dementia, but she could only find older people with Alzheimer’s disease, and struggled to find people with early dementia.
She started documenting her decline on TikTok and has since found a number of middle-aged people suffering from similar forms of dementia.
Through this, she has found a group of friends and uses their experiences as a ‘road map’ of what to expect for herself.
She added: ‘My therapist suggested I start my own TikTok – I didn’t want anyone else to feel as isolated as I did at the time.
‘It’s really satisfying to know that there are people who need the same guidance as I do. It’s very nice that they just understand it and that I don’t have to explain it myself.’
Until now, Jana has only needed home care when she was injured or sick, but doctors think she will need full-time care within a year.
She said: ‘My doctors’ recommendations were to look for home care resources, and that will probably happen within a year.
“We now know which company we’re getting, so it’s ready to go as soon as I need it.”