Words by Abi Scaife
Graeme Sutherland didn’t get popular on TikTok through pranks or lip-syncing videos, but by documenting his family’s journey with Alzheimer’s.
“My mum was diagnosed with early onset but late-stage Alzheimer's, just before her 60th birthday. We just thought she was depressed,” Graeme tells Smiley News.
Unfortunately, Graeme’s father had passed away suddenly just a couple of years earlier - meaning her behaviour didn’t seem so strange. Soon, though, things got worse - and that is when they received the diagnosis.
“From there, me and my sister just tried to make the most of the time we had.”
Alzheimer’s disease is a type of dementia, which affects around 900,000 in the UK, according to Alzheimer’s Society.
It can be easy to pigeonhole Alzheimer’s as nothing more than old people getting forgetful - especially if your only experience of the disease is what you’ve seen in TV and film.
In reality, Alzheimer’s disease is a physical illness, affecting the brain. Over time, the disease changes the brain, causing problems with memory loss, language, behaviour and other symptoms. It is unclear what causes Alzheimer’s, and though there are treatments, currently there is no cure.
“During COVID I just started posting some things to TikTok - I didn’t expect it to blow up the way it did,” says Graeme. “I realised that a lot of people were interested, because mum looks so young, and because people don’t know a lot about Alzheimer’s.”
Through his TikTok page, where he is known as graemefs, Graeme has created a community of people, many of whom also have close family and friends with Alzheimer’s. His videos give comfort to others, showing them that they aren’t alone - and in return his followers have become invested in Graeme and his mum, Linda, often suggesting gifts for her, songs to sing, or activities that could bring her joy.
“I've been continuing to document my mum's journey because it's beneficial for me, I enjoy keeping the memories to look back on,” Graeme explains. “But it's also helping a lot of people who are going through it [too] - it's a lonely thing for a lot of people, and stressful. It helps knowing that someone else is going through it, too.”
Despite how difficult it can be to have a loved one with Alzheimer’s, Graeme says it’s not all “doom and gloom”. He still has many happy moments with his mum and sister, many of which he documents on his TikTok page - including bringing her cupcakes, and singing such Scottish classics as ‘You Cannae Push Your Granny Aff a Bus’, in which you can see Linda’s face lighting up.
Because Graeme’s mum was under 60 when she was first diagnosed with Alzheimer’s, they didn’t qualify for funding - and Graeme and his sister, who is a nurse, ended up caring for her full-time.
“People aren't aware of [early-onset Alzheimer’s]. I’m trying to raise awareness, to help educate people,” adds Graeme, who is using TikTok, where he has over 377,000 followers, to spread awareness. “There are so many people getting it in their 30s and 40s, which is terrifying. I don't think people realise that that's something that can happen.”
“My mum was a teacher. In a way, she's still getting to educate people.”
Thanks to the charity Alzheimer Scotland, which Graeme and his sister contacted for help after their mum’s diagnosis, the pair were provided with funding, as well as respite care. Respite is hugely important for carers - when your work never stops, it can be incredibly isolating and has a huge impact on your mental health. Working as a carer is hard enough - but the emotional exhaustion that comes with caring for a loved one is not something to ignore.
Linda lived at home with them as her primary carers for six years, until they were able to get her into an assisted living facility, where she lives now.
“I feel like when you do that you feel like you've given up,” says Graeme. “We still feel guilty but it's been amazing for me and my sister - she’s just 10 minutes up the road and we get to spend quality time with [our mum] whereas before we were so tired and stressed that it wasn’t quality time.”
It might feel terrible at first, going from being a full-time carer for your parent to them moving into assisted living, but Graeme cannot stress its positives enough. Having someone take the day-to-day worries off his plate has allowed him to have a better, more meaningful relationship with his mum - and to enjoy the time they have together even more.
“Now, I take her out every weekend and I go during the week as well. We can actually enjoy spending time with her,” Graeme explains. “When we go home at night we know she's cared for and don't need to have that constant worry that we used to have. She's got a good social life there, and all the carers are amazing too - it’s like an extended family.”
Today, Graeme is an ambassador for Alzheimer’s Scotland, helping to raise awareness for the charity, as well as the disease it tackles. Though he is in a place where he no longer needs to rely on the charity, others do - and Graeme is working to make sure that they have access to all the help they need.
At Smiley Movement, we like to elevate the work of charities across the world. Here are three charities whose causes align with the themes in this article.
Dementia UK. This is a charity that provides Admiral Nurses for families affected by dementia, to help support those in need. Find out more here.
Alzheimer’s Research UK. Alzheimer's Research UK are the UK's leading Alzheimer's research charity aiming to find a cure for dementia. Learn how to support them here.
Alzheimer’s Society. They are working towards a world without dementia, and are giving help to those living with dementia today, and providing hope for the future. Learn more here.