A student who moved in with her grandmother after she was diagnosed with Alzheimer’s, and began posting TikToks of their day-to-day life together in lockdown, gaining more than 250,000 followers, is now training to be a dementia specialist in her grandmother’s memory.

Orla Phipps, 23, a full-time student at Brighton and Sussex Medical School, from Eastbourne, ditched her one-bed student flat in lockdown to live with her grandmother, Agnes Phipps, who was diagnosed with Alzheimer’s in 2019.

Over time Orla became Agnes’ full-time carer, and started videoing their interactions to keep their family up to date, which she decided to share on TikTok.

From there she went viral, with her first video receiving more than 50,000 views in a matter of days before follow-up clips were viewed by millions.

Orla now has more than 250,000 followers, and since her grandmother died in 2022, aged 88, she sees her page as a “time capsule for (their) time together”.

Orla now sees her TikTok as a time capsule for her happy memories with her grandmother (Collect/PA Real Life)

She has now started studying for a MA in dementia studies, and hopes to go on to do a PhD in the subject so she can help others like her grandmother in the future.

“I used to set my phone up to go live on TikTok, and she loved seeing all the comments,” Orla told PA Real Life.

“I’m not sure if she always fully understood what was going on but, either way, it made her so happy.

“Before she died she said she wanted to die a hero, and I think she did in some ways – she helped so many people with Alzheimer’s awareness and brought joy to their day.

“I’m hoping to do a PhD researching dementia policies that are used in care homes and residential settings – I think there needs to be many improvements in the day-to-day treatment of people with dementia, so I’d love to help towards that.”

Agnes died in 2022 aged 88 (Collect/PA Real Life)

Agnes Phipps was diagnosed with Alzheimer’s in 2019.

Orla explained: “I think it didn’t come as much of a surprise, because we noticed things leading up to that.

“She was always an anxious person, but her personality completely changed and became the opposite really – she always used to follow us around the house when we were cleaning up after her, but she suddenly didn’t mind and became really laid back.”

At the time, Orla was studying film production at the University of Southampton and wished she could see her grandmother more often.

So when the Covid lockdowns began she decided to move in with her.

Over time, Orla became Agnes’ full-time carer (Collect/PA Real Life)

“My grandma had just had a fall and broke her hip, and came out of a care home where she was staying for six weeks,” Orla said.

“I was living in a studio flat in Southampton, and she was on her own, so I wanted us both to have company.

“I think she was really happy to see me every day, and my family really appreciated it too.”

As Agnes’ condition worsened, Orla became her full-time carer.

Orla said: “I’d help her get dressed, wash her, make sure she was taking her medicine.

Agnes was diagnosed with Alzheimer’s in 2019 (Collect/PA Real Life)

“My parents would help too – they used to bring food for us which was lovely.

“I made sure she was OK when I could hear her shuffling around in the night – I’d just help her get back into bed.”

After living with her grandmother for a few months, she wanted to share her experiences with her family, so she began taking videos of their day-to-day life, and decided to share the videos on TikTok too.

She said:  “I didn’t have any followers to begin with.

“I just posted them because my siblings didn’t really see my grandma much with the way the world was at that time.

Orla and her grandmother got more than 250,000 followers on TikTok (Collect/PA Real Life)

“I think the first one I did was when I was playing Animal Crossing, and my grandma came in and was so interested in it, so I took the video for my family and put it on TikTok as well – after a few days it got 50,000 views, I couldn’t believe it.

“I would post most days of mundane things like us watching TV or just having a joke.”

Over time Orla gained 253,000 followers, often receiving heart-warming comments from others with family members with Alzheimer’s.

She said: “It was quite overwhelming, but in a great way – I’ve tried to read every comment I can but some of the videos just have so many.

“They’re all lovely – people share their stories and it’s a really nice community for people who have experienced similar things to relate to one another.

“I get people commenting things like ‘My granddad just got diagnosed, and your videos are helping me communicate with him’.

Orla made TikToks with her grandmother in lockdown (Collect/PA Real Life)

“People would comment that they learnt a lot about Alzheimer’s too.”

Orla said she believes her videos also helped reduce the stigma around the disease, she said: “You don’t often see older people on TikTok so I think it was nice to show their funny and heart-warming side on there.

“And I think a lot of people have presumptions about people with Alzheimer’s, and I wanted to show what my grandma was like to raise awareness – I think sometimes people assume anyone with Alzheimer’s is at the end-stage.”

In September 2022 Agnes died after contracting coronavirus, which developed into pneumonia.

Orla said: “She started declining quite slowly to begin with – she did things like forget she’d eaten all of the chocolate mousses in the fridge.

“But after that she lost her ability to move properly, to support herself and to talk – we took her to the hospital but doctors said there was no evidence of a stroke.

“She was then in a hospital bed at home, but she’d still be smiling.

“She died at home – I had been with her that day and I went home to my parents to help them put the Christmas tree up.

Orla moved in with her grandmother after she was diagnosed with Alzheimer’s (Collect/PA Real Life)

“We called in to see her and could see she was really sick, so we got the family over and FaceTimed any relatives that lived far away.”

Orla is now grateful that she has the TikTok memories to look back on.

She said: “It’s like a time capsule for our time together, and I still get people messaging me saying how much they enjoy the videos.”

Since her grandmother died, Orla has started studying for a MA in dementia studies.

“I started working in the film industry after graduating from my BA, but I decided to take a break and work in a care home for a bit,” she said.

“I met other people with dementia there and it made me realise I want to go into that field in my grandma’s memory.”

“I want to do a PhD after this, to research policy surrounding Alzheimer’s which will hopefully help people like my grandma.”

Alzheimer’s Society vows to end the devastation caused by dementia – their dementia advisers can give someone the guidance, advice, and empathy they need.

To help them be there for people living with dementia this Christmas, donate to their 12 Days of Christmas appeal via  alzheimers.org.uk/Christmas​.