‘My grandma is 93 now,’ Jessica Anne, known online as Little Jess, says while holding the hand of an elderly woman lying in bed, in a clip shared with her 1.8 million TikTok followers.

‘Bloomin’ heck!’ the woman, Dorothy, replies. ‘I’m glad I’m not like her, then. Ninety three, I’m glad I’m not that age yet.’

Jess, 28, chuckles before reassuring Dorothy that it’ll be a long time before she turns 93. But beneath the laughter is Jess’s deep sadness – because Dorothy is in fact her grandmother, living with advanced mixed dementia.

Dorothy, originally from Chesterfield, was officially diagnosed in 2017, a year after she first showed symptoms of the illness. For the last three years, Jess has shared her family’s experience with Dorothy’s dementia on TikTok, giving her followers almost daily updates.

The clips show the day-to-day reality of dementia, as Jess speaks to the woman she will always know and love as ‘nan’, while Dorothy no longer recognises her granddaughter.

‘Now, [Nan] doesn’t know who I am at all, and I don’t really know who she is either, so we’re very much like two strangers meting each other for the first time every day,’ Jess tells the Daily Mail, in support of the Defeating Dementia campaign.

It’s a painful, even ‘traumatic’, reality with which Jess has to grapple. However one constant remains – that they see each other every day.

Growing up, Jess lived just minutes away from her nan and grandad, ex-soldier Arthur, and was often at their house. 

Jessica Anne, known as Little Jess to her nearly 2 million TikTok followers, documents her near-daily visits to her grandmother Doris, who is living with two different types of dementia

Dorothy was a mother-of-five who had spent her working life in cafes and factories. In her later years, she took on a huge role in helping raise her granddaughter and the pair formed a close bond.

‘We never had a day when we didn’t see each other. Even growing up when I had friends at school, I would always pick my grandparents [over friends] because that’s just the bond we had.’

She pauses, and reflects: ‘It’s a shame really, that the world isn’t still like that.’ 

It was in 2016 that Dorothy, then 83, began showing symptoms of dementia. But despite the advancements in mental health care and awareness, Jess says the early signs of dementia were relatively unknown at the time.

Everyone experiences dementia differently. Use this checklist to help you make a note of your symptoms before you talk to your GP.

Symptom Checklist

‘We didn’t know what we were looking for,’ she says.

Throughout her life, Dorothy has been a ‘warm’ person, with a personality Jess describes as ‘sunshine’ and ‘light’, and a love of other people, striking up conversations with anyone and everyone.

‘She would initiate conversations out of anywhere, a real talker,’ Jess says.

But suddenly, Dorothy seemed to have lost her ability to chat. Jess recalls her nan becoming ‘lost’ in conversations, unable to keep track, and even ‘freezing’ at points as she struggled to find the correct word.

Jess and her family were alarmed by Dorothy’s sudden lack of ability to hold a conversation – but over time, her symptoms became more acute.

Doris, who is now 93 years old, is living with vascular dementia and Alzheimer’s disease in advanced stages

Doris pictured with her late husband Arthur, a veteran. The couple met at a dance hall in the 1940s

‘She wasn’t aware of her surroundings at home, was losing items in the house, had no spatial awareness in her own home that she has lived in for years and wasn’t aware of where things were. It was quite scary.’

Dorothy began having falls and ending up in hospital, leaving her family begging doctors to look into her symptoms. But according to Jess, their pleas fell on deaf ears for a year.

‘When we did go to the GP they fobbed her off for a year with loads of different things – a water infection, anxiety, depression, isolation.’ 

But Jess and her family knew there was something else causing Dorothy’s symptoms.

Meanwhile, Dorothy herself knew something wasn’t right, making her awareness of her symptoms clear to the family.

‘She would say “my brain feels really foggy today”, or “the cogs aren’t working”,’ Jess recalls – noting that Dorothy’s own description of her symptoms helped them understand what was happening to her.

After a year, Dorothy was finally diagnosed with Alzheimer’s and vascular dementia in 2017. But for Jess, any relief was eclipsed by a fear of what lay ahead for the family.

‘We were sent home with a word and that was it,’ she says.

Following the diagnosis, Jess and her family did everything they could to ensure Dorothy could continue living at home. Arthur had passed away in 2012 and the home they shared together was ‘the last piece’ of him. 

They made adjustments in the house and stuck Post-it notes on furnishings to remind Dorothy of things she needed to do around the house. 

Jess has always had a close relationship with her grandmother, visiting her every single day as a child and often choosing to spend time with Doris over her school friends

Jess and her family began to notice Doris’s behaviour changing back in 2016, with the former factory worker telling them she felt ‘foggy’ as she struggled to remember words

Jess’s mother became a full-time carer and spent most of the day with Dorothy, before Jess popped over in the evening.

For a couple of years Dorothy managed well on her own, but as her symptoms progressed Jess began to fear for her safety.

Dorothy enjoyed going for walks to keep herself moving. But soon, these walks became a danger as she would forget how to find her house again. More and more frequently, Jess would receive phone calls from her confused nan who couldn’t make her way home.

Dorothy would also forget to take her medication, or take too many pills, which could have been disastrous for her health.

As her cognition continued to decline, Dorothy suffered more and more falls. 

‘I thought it was old age, but it was actually the dementia. She forgot how to walk and move her body, that connection between brain and body was cut off, missing,’ says Jess.

Doris, pictured as a young woman, spent her younger years working in various cafes and had a stint in the Trebor factory

After several spells in hospital, all caused by falls, social services made contact with Jess’s family and suggested Dorothy would need round-the-clock care. At the end of 2019, Dorothy moved into a care home where the family, including Jess, continued to visit her every day.

When the nation was plunged into lockdown months later due to the Covid pandemic, Jess, for the first time in her life, found herself unable to visit her nan every day. 

When visits were allowed, she had to wear full PPE and wasn’t allowed to hug Dorothy. 

‘We were grateful she had a safe place to be but the visits were either through the window or not at all. We wore PPE every time and nan couldn’t understand why we were in capes and masks.’ 

For the last three years, Jess has documented daily visits to Dorothy in the care home on TikTok, sharing all facets of dementia – including the highs and the lows.

She had long filmed moments with her nan to create memories on which she could look back, but one day in 2023 Jess decided to post a clip on TikTok.

‘I went to visit [nan] on the Monday and she knew who I was. By the Tuesday she didn’t know who I was at all, and I captured that moment on video.

‘I went home and felt all these different emotions that I’d never experienced on this journey before. Heartache; grief for someone who is still here; I was hurt, I was sad, I was angry at the world, and I was disappointed that I didn’t know more about dementia and I didn’t have anywhere to find that information.

‘I thought, there must be some other people in this world who feel all the same ways I do.’

Searching for others who were living the same experience as her, Jess uploaded the clip of Dorothy unable to recognise her.  

‘The clip reached millions over the next few days, people from so many different avenues were flooding in with comments, from people who had never heard the word dementia before to others who were grieving because they’d lost someone to dementia,’ she says.

It was clear to Jess that her story had resonated with an enormous audience  – and it allowed her to connect with people going through the same experience. So she kept uploading snippets of her visits with Dorothy. 

In the world of social media where people can throw criticism at strangers at the drop of a hat, Jess’s content has achieved something rare.

She has built a community of people whose lives have, in some way, been affected by dementia, and who tune in every day to see Dorothy.

Each day Jess starts afresh with her nan, who has not recognised her for several years now.

‘The moment I touch that door handle I take a deep breath because I just don’t know what’s going to be behind that door today,’ she explains.

‘I’m still learning in the moment every day. Dementia is so unpredictable, you don’t know what the day is going to hold.’ 

Although Dorothy doesn’t recognise Jess, one thing always helps them connect – music.

Research has shown that music can help people living with dementia connect to the world, even as they lose some cognitive abilities.

Angelo Makri, a knowledge officer at Alzheimer’s Society, says: ‘A familiar song can unlock treasured memories and spark special moments of connection with others.’

He continues: ‘There’s evidence that music may prompt memories, lift mood and helps maintain a sense of personal identity. It can have a truly positive effect on the wellbeing and quality of life for people living with dementia.’

In many of Jess’s clips, she sings to Dorothy and Dorothy joins in.

‘It’s our safe space, if she’s having a stressed day, a sad day, an angry day, music is a connection point for us. 

‘Now when I step into her space we have to build up that connection and bond again because she doesn’t know who I am. Whereas music is a safe zone for us.’

Jess doesn’t know many of the songs Dorothy likes to sing (‘they’re from the war’, she jokes) but she encourages her nan to embrace music nonetheless, thanks to its soothing effect.

‘She’s somebody who can’t remember her entire family or her own life anymore, but music brings up memories that are tucked away.

‘We don’t go more than an hour without singing something, it’s always been our connection point.’

There is one song Dorothy sings that means a lot to them both, You Are My Sunshine.

‘It was a song [Nan] sang to me at the beginning of my life when I first entered the world. Now we’re reaching the end of her life and we have come back to it, it’s a real 360 degree thing.’

Jess doesn’t know what lays ahead on any given day for herself and for Dorothy as dementia continues to attack her brain. But she tries her best to maintain a positive outlook.

‘Some days she’s sleeping the whole visit, some days she’s shouting at me to get out of her room, but I always try and look for one joyful moment in that day, no matter how small it is.’

Although Jess’s clips serve to help other people who are affected by dementia, they have a deeper purpose – to document precious time with her nan while she still can.

She says: ‘One day I will look back on this digital diary we’ve created. [Nan] would be overwhelmed if she knew how many millions of people she was helping. 

‘She always wanted to help people so it’s really lovely that we’ve created something so special as this.’