A 52-year-old woman on TikTok is sharing what life is like with dementia: 'There's a new heartbreak every day'

• Jana Nelson, 52, was diagnosed with dementia in 2020 and has been sharing her journey on TikTok.
• She spoke to Insider about how she is hoping to help people with the same condition feel less alone.

Jana Nelson was diagnosed with dementia on July 1, 2020. She was just 49.

She had been living with a condition called hydrocephalus — a build-up of fluid in the brain — since 2012, but her symptoms gradually worsened.

In a recent TikTok, Nelson, who is now 52 and from Idaho, described some of the early warning signs of her complete diagnosis: Major neurocognitive disorder, caused by her brain condition, fetal alcohol syndrome she'd developed in her mother's womb, and repeated concussions.

"At first it was not wanting to wake up," she said in the video, which has been viewed 1.8 million times. "I'd sleep and I'd be so tired. And sleeping and being in a dream state felt so good that I would just want to stay there."

Nelson later found out her agitation, along with the belief that the people around her were gaslighting her, were down to what was going on in her brain. She said she started feeling "absolute despair" that she couldn't find anybody her own age going through the same thing.

"I spent sleepless nights scouring the internet to find someone, anyone, that was experiencing dementia the way that I was," she said. "There was no one."

Feeling desperately isolated by her diagnosis, she turned to TikTok

Nelson's doctor suggested TikTok might be a place to find company, and she was right. Nelson soon found a whole community of people, both those with dementia and the ones caring for them. She now has more than 70,000 followers.

TikToks with the hashtag #dementia have 3.7 billion views on the app. Some videos are of children and grandchildren speaking with older relatives, showing how they make their days a little easier and more comfortable. Others are posted by people like Nelson who are using TikTok as a journal to show their own lived reality.

"There are so many reasons that I believe people should know the realities of living with dementia," Nelson said. "Mainly, it's incredibly isolating so people don't truly know what it's like unless they're experiencing it."

There are also a great deal of misconceptions about dementia floating around, Nelson added. For starters, "dementia" is an umbrella term for hundreds of different diseases and conditions, and can affect people in countless different ways. People are also a little in the dark about what to expect.

Diagnosis of early-onset Alzheimer's and other forms of dementia in people aged 30 to 64 increased by 200% between 2013 and 2017, according to data from healthcare federation BlueCoss BlueShield. There is no definitive test for it, and as a result younger people often go through many tests and treatments before they receive the correct diagnosis.

"There is an old saying still used by doctors today, that 'If you remember that you don't remember, then you don't have dementia,'" Nelson said. "This couldn't be further from the truth and leads to people not getting help sooner."

'People don't understand until they see it'

Dementia doesn't discriminate, Nelson said, because it affects people of all ages, intellect, race, and gender. For example, the family of Bruce Willis announced this week that the actor has been diagnosed with frontotemporal dementia — the most common form in people under 60. Nelson said she had been following his story closely since he developed a condition called aphasia, which is when a person develops difficulty with language or speaking.

"I told my husband then that I was certain the diagnosis of some form of dementia was to follow," Nelson said. "I was saddened that indeed he was."

Willis' diagnosis on such a huge platform helps people put a face to dementia, Nelson said, just as people know more about Parkinson's thanks to the advocacy of Michael J. Fox and Muhammad Ali.

"I'm extremely grateful that Bruce and his family are being open with his diagnosis," Nelson said. "It may help give some insight and open further discussions to the different types of dementia that are out there and the research that's needed."

Dementia affects everything from someone's ability to express emotion, their facial expressions, and their ability to understand the world around them. Sometimes it impacts eyesight, leading people to feel more afraid of going outside.

"It's not just about memory loss or trouble with speech," Nelson said. "It eventually leads to loss of every function the brain controls."

Living with dementia is one the most difficult things a person can do, Nelson said, and there's "a new challenge, new frustration, and new heartbreak with it every day."

Nelson sent Insider photos of her MRI brain scan to show what dementia really looks like. The dark area shows the fluid where the temporal lobe — associated with memory and processing sound — should be. Doctors told Nelson this caused another part of the brain, the occipital lobe which is the visual processing area, to atrophy as well.

The scan also shows that a portion of corpus callosum — the nerve fibers through which the left and right hemispheres of the brain communicate — is missing.

"People don't understand until they see it," Nelson said. "I have been told by the neuro psychologist that diagnosed me that I should not be functioning at the level I am considering the brain that I have."

Nelson shares her story for all the people who are living with dementia alone

One of the hardest parts of Nelson's diagnosis is the constant state of mourning, she said — "mourning the loss of who I used to be with each new discovery of what I can't do, say, or remember."

The sadness on the faces of family and friends when the notice her struggling or a decline is also devastating.

"The thought of them having to watch me struggle and lose the person they love and be helpless to stop it," she said.

What gets Nelson through is the unconditional love of her husband and kids, and the kindness of her friends, she said. It's been "a learning curve" for them all, she said. Nelson's husband does the majority of her healthcare and his son, who is 11, chips in too, by doing chores and keeping her company after school.

Nelson said it breaks her heart that there are many people living with dementia who are alone. That's part of the reason she wants to be so open and honest online.

"My biggest wish for others is to advocate for themselves, to share their journey with others," she said. "We have a voice and each of us deserves to be heard while we still can."