‘My nan has dementia and doesn’t know who I am anymore – I share our journey on TikTok to help others feel less alone’

A young woman whose grandmother no longer recognises her due to dementia shares the reality of her diagnoses to millions on TikTok to help others feel less “alone”.

Jess, 27, who works in administration and lives in the East Midlands, said her 92-year-old grandmother Dorothy Jean, known as Jean, was diagnosed with vascular dementia and Alzheimer’s disease in 2017.

Jess said her nan’s symptoms, which initially included forgetfulness and a loss of balance, have gradually worsened over time and she is now bed-bound in a care home, unable to eat, drink or dress herself.

Jess, who does not wish to disclose her surname for privacy reasons, said she visits her nan around four days a week, but one day last year, Jean “forgot (her) whole existence”, which was “heartbreaking”.

Thinking about others who might be “experiencing that exact same feeling”, Jess decided to upload a video of the moments they had shared together on TikTok, and her content has now been seen by millions.

Jess told PA Real Life: “She just doesn’t know who I am anymore, she doesn’t recognise me, and sometimes she’s living in such a young age that she doesn’t even know she has grandchildren.

“She’s literally forgotten everything about her whole life that she built, she’s just a shell of herself.

“But anyone who steps into the room with my nan, no matter where she is in her dementia journey, they’ve always come across the warmth that she has about her.

“She’s got such a heart of gold and she would do anything for anyone.”

Jess explained that Jean was born and raised in Chesterfield and worked in the Trebor factory, wrapping mints and creating jar labels.

Jean married her husband Arthur in 1951 and they received a letter from the late Queen Elizabeth II to celebrate their diamond anniversary (60 years) in 2011, before he suddenly passed away from cancer in 2012.

Jess said she and her grandmother have always had a “close bond”, with Jean helping to raise her, teaching her how to eat, drink and walk, and attending every dance show to support her.

Recalling one of her favourite memories, Jess said: “I have tomato ketchup with almost every meal and she’d make so much fun of me that she’d buy the biggest bottle she could find.

“One day when I went round for a roast, she said, ‘Oh, you need to shake it because there’s not much left’, but I shook it and I couldn’t get anything out.

“My nan took it and she couldn’t get anything out, so my grandad took it, he shook it and it went all over the walls, the ceiling, the floor, the table and my nan’s face, honestly, I still picture it now.”

Jess said she would spend most days with her nan, sitting and “talking about the world” for hours, and she would sometimes skip plans with friends to visit her.

However, in 2017, Jean was diagnosed with vascular dementia – a common type of dementia caused by reduced blood flow to the brain – and Alzheimer’s disease.

According to the charity Alzheimer’s Society, vascular dementia is the second most common type of dementia after Alzheimer’s disease, and symptoms vary depending on the person.

Although Jess’ family felt a sense of relief with the diagnoses as they finally had answers, they did not “understand what the future” would look like.

“She was losing herself more and more every day, forgetting things and her routine and the layout of her home,” Jess said.

“It was such a strange thing for us all to experience, but she kept telling us at the beginning, ‘It feels like my brain’s muddled up, it’s not working today’.”

Jean’s symptoms started with forgetfulness and memory loss, before progressing to a loss of mobility, and she now lives in a care home and receives support 24/7, with Jess describing the staff as “incredible”.

Jean is currently bed-bound and on an “end of life pathway”, but Jess visits her regularly and still tries to keep her “brain busy”.

As time has progressed, Jess said she and her family have “faced any challenges with open arms”, and they have let Jean and her diagnoses “lead the way”.

However, Jess recalled one “heartbreaking” moment last year where, within 24 hours of visiting, Jean had forgotten her name and who she was.

“It just broke my heart and I thought, ‘How could you forget 27 years of the life that we spent together?’ It was just all gone,” Jess said.

From this moment, Jess decided to create a video with some of her favourite memories and upload it to her TikTok account @little_jessx.

With videos of her visiting her nan, singing to her and just talking, Jess has since acquired more than 450,000 followers, with one of her videos receiving 23.8 million views.

In this video, Jess shares several clips of Jean asking who she is and struggling to remember her name, which Jess said “hits like a tonne of bricks every single time”.

“I honestly didn’t expect the first video to resonate with people the way that it did, and so many people connected with it in such a different way,” she said.

“People who were grieving on their own dementia journey, or people who had never even heard of dementia before, it hit me how important it was to keep sharing those moments.”

Since then, Jess said TikTok has become a “safe space”, where she and others can share their experiences of dementia, and she has “found a strength” that she never knew she had.

Along with raising awareness of dementia and organisations like Alzheimer’s Society, which has supported Jess and her family, she wants to highlight the special bond between grandchildren and grandparents.

“I just don’t want people to feel alone and be scared of dementia,” Jess said.

“You can still have love and beauty in the small moments, even when things are tough.

“Dementia can be so unpredictable, but they’re still there through the darkness.”

For more information or support, call Alzheimer’s Society’s Dementia Support Line on 0333 150 3456 or visit alzheimers.org.uk.