Glasgow TikTok star Graeme Sutherland talks about his mum's Alzheimer's

The 29-year-old from Glasgow and his mum became an inspiration to many by creating a conversation online about the devastating impacts of the illness.

Now, he is preparing to skydive for Alzheimer Scotland in August to raise money. 

As he shares his mother’s story in the Glasgow Times today, he does so in the hope of raising awareness of dementia, as projections predict a 75% increase of people being diagnosed with Alzheimer’s in Scotland by 2031.

Alzheimer’s, an illness we hear of, often misunderstood, life-changing to have. A cruel disease that doesn’t care who you are, what your plans are, or who you become. The crippling effects take over, and your life changes direction. You are on another gear and heading down a different path. Graeme has been on this path for the past five years after his mother, Linda, 66, was diagnosed with Alzheimer’s five years ago. Since then, he has embarked on a journey to highlight the illness and tackle the misconceptions to help others recognise the early warning signs.  

Earlier this year, locked down in his flat, Graeme, from Battlefield, decided to try a new approach to inform more people about the debilitating condition. He uploaded videos to the popular site TikTok that captured what life is like living with dementia.

What began as a small audience his clips quickly became viral sensations. He soon rose to TikTok fame after amassing a following of over 80k followers.  His heart-felt videos document the effects the cruel disease has on his mother, from losing her eyesight to forgetting her son’s name to joyful videos showing her dancing and singing.

One clip showing her face light up when her son mentions her late husband’s name has been viewed more than 2.1 million times. His videos have touched the hearts of many, with people worldwide reaching out to him to thank him for raising awareness by sparking a conversation, challenging narratives, and bringing light and laughter to an otherwise darkened space.

Since then, he has continued working hard, determined to do whatever he can to keep the conversation going. He will soon be skydiving to raise money for Alzheimer Scotland on August 21 with his friend Iain Liddell. 

”We want to do this skydive for charity. The image a lot of people have in their head is that Alzheimer’s only happens to older people, and many people still don’t fully understand what Alzheimer’s is.

“The impact and variations of how Alzheimer’s affects people are often misunderstood,” he says. 

He hopes by speaking out about the reality of what life is like for someone who has dementia. More people will understand the true nature of the illness.

“It is not just about memory loss. People will come up and try to speak to my mum, and she struggles to put words together; she doesn’t know how to respond. It affects her sight and her coordination. If you told my mum to touch a wall, she would not know where the wall is. If people meet her, they won’t understand what is wrong with her, and there are so many variations of the disease that people are not aware of. People need to know that if someone is showing these signs, then it could be Alzheimer’s. It’s more common than people think, and it’s affecting a lot more younger people now. People in their 40s can be diagnosed,” he added.

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Statistics from Alzheimer Scotland state that Dementia is a significant cause of disability in people aged over 60. It contributes 11.2% of all years lived with disability, more than stroke (9%), musculoskeletal disorders (8.9%), cardiovascular disease (5%) and all forms of cancer (2.4%). By 2031 it is projected that there will be approximately 102,000 to 114,000 people with dementia in Scotland, a 75% increase.

Graeme hopes that by sharing his mother’s story, he can help other people recognise the early symptoms of dementia after Linda was misdiagnosed with severe depression after the death of her husband Ronnie in 2013, who tragically died from a brain tumour.

The changes were stark, he says, as he reflects on the time when his mother began to behave differently. She lost weight, became forgetful, and simple tasks were no longer simple. He knew it wasn’t depression as he noticed her physical and mental decline.

“It was tough for us to push for a diagnosis because we were told it was just depression. Me and my twin sister Linda knew it was more than that,” he says.

And Graeme was right. On a family trip to London in 2016, he noticed his mother spraying deodorant in her shoes and wearing unclean clothes, and she could not understand how to press a button when on a trip to the Harry Potter Studios. His worst fear was confirmed; something was seriously wrong.   Soon after the trip, he took his mother to the doctors, and she was diagnosed with a progressive stage of Alzheimer’s. Graeme and his sister Kirstin, 29, a respiratory nurse, were left devastated, confused, unsure of what steps to take next.

He soon reached out to Alzheimer Scotland, who provided him with essential information and what support his mother was entitled to claim. The charity became a lifeline, but the journey has not been easy.

“Financially, it has been difficult,” Graeme says. His mother could only access specific funding and wasn’t entitled to have care paid for her because she was under 65 — the minimum age required to access funding.  

“It has been frustrating,” he says. As “many people under the age of 65 are being diagnosed with dementia.”  After his mother's diagnosis Graeme and his sister became her carers, as well as holding down full-time jobs, they would manage the daily tasks of attending to her personal care. “It’s been tough, there are good days, and there are bad days,” he says. 

A report by Alzheimer Scotland states: Carers report a lack of services. In a survey, only 37% felt that the services available were sufficient for their needs. 30% said daycare was unavailable, and 50% could not access home support. Information received at the point of diagnosis was inadequate, and only 28% had access to training in how to cope with their caring role.

Since the lockdown, his mother’s condition has deteriorated rapidly. She was stuck at home, in front of the television and unable to go out and visit anyone. The restrictions have had a “detrimental impact on her,” he says.  His mum is now at the last stages of the disease, and the pain of slowly losing her can be overwhelming. She is looked after by nurses who come in twice a day to provide essential care. Her daughter Kirstin and her boyfriend also care for her and live with her full time, with Graeme visiting three times a week to spend quality time with his mum after recently moving out. And while he may not know how much time he has left with his mother, Graeme will do whatever he can to raise awareness of the illness and continue to create TikTok videos that inspire—reminding people that even in the darkest moments, hope is not lost.

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