TikToker, 52, reveals what life with dementia 'feels like' in viral video

This article is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Contact a qualified medical professional before engaging in any physical activity, or making any changes to your diet, medication or lifestyle.

A TikTok creator has gone viral online for sharing her experience with dementia.

Jana, a.k.a. @welcome2dementia on the app, regularly uses her platform to openly discuss what it feels like to live with the neurodegenerative disease. Her TikTok bio states that she is "sharing my journey, my past, and having fun while living [with] dementia."

Jana, 52, recently posted a three-minute video discussing what it really "feels like" to experience the early stages of dementia to her 68,000 followers. It has since gone viral on the platform, racking up more than a million views since being posted on Monday.

"Somebody asked me what dementia feels like and what caused me concern in the beginning, so I'll tell you from the beginning up to now what it felt like," she began.

"At first it was not wanting to wake up," said Jana when detailing her initial worries. "I'd sleep and I would be so tired."

According to Jana, being in the "dream state" made her feel so good that she would just want to stay there. When Jana would wake up, she would feel "extremely angry" and "agitated" just wanting to go back to sleep.

She also shared that she got to a point where she thought people around her were "patronizing" her, and felt as if people talking to her "weren't listening enough." However, she soon learned that this was because she wasn't finishing her sentences or that she had been repeating the same questions.

"It got to the point where I felt like I was on a boat and my feet were unsteady all the time," continued Jana. "To the point where you feel like people are playing tricks on you and lying to you about the things that you've done or where things turned up or disappeared."

Jana admitted that she ultimately started to feel introverted or agoraphobic, but it turned out she was unable to have conversations with people. As a result, she became terrified to interact with other people and only felt comfortable interacting with her family.

Physically, Jana started dropping things and getting frustrated with things that used to be "normal." She confessed that she now needs help with "just about anything," from opening things to cooking. She is also having difficulty controlling her bladder and bowels. According to Jana, "the list just goes on."

"I feel betrayed by my brain because there are things that I should remember," she concluded.

TikTok users took to the comment section of Jana's latest video to express their condolences, as well as thanking the 52-year-old for having the courage and strength to share her journey with the world.

"How generous of you to be so vulnerable and honest. This video is such a gift. Thank you! I am so sorry this is happening to you," stated one user.

"As a pharmacist, thank you. This is the side I have never heard but hoped to learn. You are doing so much good here," said another.

"This was a very detailed and wonderful explanation. Thank you for being so raw," read another comment.

Other users didn't realize dementia could affect people as young as Jana.

"Wow I had no idea people as young as yourself could suffer from [dementia]. Thank you for sharing and educating others," commented one user.

Jana's previous TikToks are all related to the topic of dementia and how it has affected her life. In one video, she talks about how her diagnosis has affected her husband. In another, she takes the time to discuss the advice she would give her younger self when it comes to developing her brain (such as researching ways to improve brain health).

If you notice a change in a family member's ability to recall information, repeating themselves, becoming confused, struggling with their vocabulary or completing tasks that would otherwise seem easy (like shopping or driving to a familiar location), consider accompanying them to an appointment with their family doctor as soon as possible.

A doctor can perform memory tests and others to measure blood pressure and check levels of various chemicals, hormones and vitamins in the body. The family physician can refer the patient to a memory clinic as well, where more testing can be done to determine if the diagnosis is dementia.

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