‘His main goal every day was to make people smile and laugh’
Stuart Gough Jones(Image: Marcus Gough Jones)
A man has paid tribute to the “love of his life” who died after being diagnosed with dementia aged just 44. Marcus Gough Jones described his husband, Stuart Gough Jones, as having a special gift for making people laugh, stating that his death “doesn’t seem real”.
Stuart, from Mountain Ash, had been diagnosed with frontotemporal dementia in 2024, after having shown symptoms of the disease since 2022. He died peacefully in hospital – aged 46 – surrounded by his family and with Marcus by his side.
Paying tribute to Stuart, Marcus said: “His main goal every day was to make people smile and laugh. He just had a way of making you feel good if you were feeling like cr*p.”
Marcus hopes his husband’s legacy will go on to raise awareness of young onset dementia, and help other families affected. He told WalesOnline of their plight getting a diagnosis, claiming that Stuart was at first wrongly diagnosed with depression.
Describing when Stuart’s symptoms began, Marcus said: “He was driving to work one day and he rang me to say he had had an accident in the car, and that he had smacked his head on the window.
“He was sick, he was tired and he had a headache. I think he had concussion. For days and days he had the same symptoms. He was very quiet because he was tired, and after that he never regained his liveliness.”
Marcus (left) and Stuart(Image: Marcus Gough Jones)
After the incident Marcus said he noticed that Stuart started presenting with unusual symptoms, which he now understands are early signs of the condition. Stay informed on the latest health news by signing up to our newsletter here
He said: “We did notice other little things. I call it a dementia smile – it’s a smile where Stuart would show his teeth a lot, an awkward smile. He was very withdrawn, tired and he developed a shake in his hand. The only words he would say were ‘okay’, ‘yes’ and ‘no’.
“If I told you he became the total opposite person, it still wouldn’t come close to how different he was. He was very outgoing, so for him to become quiet and start only saying three words, we knew something wasn’t right.”
Marcus said he took Stuart to the GP several times during this period, for the doctor to diagnose him with depression. “I said: ‘No he’s not depressed,’ but they didn’t listen and tried him on three different types of antidepressants over six or seven months.”
By Autumn 2023, Marcus said Stuart’s behaviour had become more challenging so he took him to Prince Charles Hospital in Merthyr Tydfil, feeling like he was getting nowhere with the GP. However, they left with no answers.
He said: “I wanted him to have some sort of scan because something wasn’t right. We now know that his dementia had advanced by that point. He kept wandering off and doing inappropriate things – which is another symptom. I took him to Prince Charles Hospital (accident and emergency) and we were there for 32 hours.”
Disabled and a wheelchair user himself, Marcus said he struggled to control Marcus at the hospital and sought help from staff. “I was told by a nurse that I could go home and leave him here, but that they couldn’t watch over him,” he said. With that, Marcus took Stuart home.
“At that point he was wandering around the house at night, I was exhausted. I was washing him, dressing him, feeding him, putting him to bed and doing his medication.”
Eventually, around November or December 2023, Stuart attended an appointment at Ysbyty Cwm Cynon, Mountain Ash. He left the appointment with two possibilities; that he had dementia or a brain tumour, and was placed on a neurology waiting list.
A further incident in March 2024 saw Marcus phone his GP out of desperation and fear for Stuart’s safety. Following this Stuart was admitted into Prince Charles hospital, before he was transferred to the University Hospital of Wales in Cardiff for 12 weeks, and then referred back to Ysbyty Cwm Cynon.
Throughout his time in hospital Stuart underwent a series of tests, and on his 11th week at the Cardiff hospital he received his diagnosis. Marcus said a scan revealed an old brain injury, but that medics couldn’t say for certain what had triggered the disease. However, a possible genetic link was discovered.
Describing the diagnosis, Marcus said: “For someone with frontotemporal dementia, it’s like their body is forgetting what it is. How a doctor described it to me is that Stuart will always remember who his family and friends were, he wouldn’t forget people, but the organs in his body would forget how to work. By the end he couldn’t eat, he couldn’t drink, he couldn’t talk, he couldn’t walk.”
Stuart with family members Ethan (right) and Charlie (middle)(Image: Marcus Gough Jones)
As the disease progressed Stuart was placed in Cwm Gelli lodge nursing home in Blackwood, which Marcus said was an “absolutely amazing place”. Then, on November 23, 2025, Stuart deteriorated and was moved to the Grange Hospital in Cwmbran.
Marcus said he cannot thank the nurses and doctors at the Grange enough for how they treated Stuart and the family. He said: “They were outstanding. They got us blankets and pillows. They brought us tea in the mornings. If it wasn’t for those nurses it would have been even harder for us.”
Describing his final moments with Stuart, Marcus said: “Just before he passed away he was sleeping, and I said: ‘Bloob – my nickname for him – stop worrying about me. I know that’s why you’re hanging on, but don’t worry about me – I’ll be fine.’ And as I finished saying that sentence he took one deep breath and smiled and that was it.
“The day that he died, it was a pain that you can’t feel and can’t get rid of. You can’t even describe where it is. You feel like you’re going to die yourself. I can’t even remember driving home.”
Since his husband’s passing Marcus said he has taken a break from his job – a business owner of The Disabled Reviewer – as he navigates his grief.
He said: “I still go in the house now and go: ‘Hiya Bloob,’ At the moment I don’t like my house at all because every room you go in, you feel him there. All I can do now is take one day at a time.”
Paying tribute, he said: “If I said to you he was the love of my life, he really was. Our marriage wasn’t perfect, but he was the love of my life.
“I had other partners before Stuart but no one ever made me feel like that; I can’t describe the feeling. Every day I would wake up and the first person I wanted to speak to was Stuart. And the last person I’d want to speak to that day was him.
“There is only one person for me and sadly he isn’t here anymore. No one could come close to him. In my life it will only be Stuart and I’m happy with that, I’ve made peace with that.”
Marcus said on the day of the funeral hundreds of people lined the streets of Mountain Ash – where Stuart worked at a shop – to pay their respects for Stuart’s last journey. His nephew, Ethan, told WalesOnline: ”Everyone knew him and loved him, he had such a massive effect. On the day of the funeral when we were driving past in the funeral cars people lined the streets. He was loved by all.”
As the family continue to process life without Stuart, they have decided to start a Community Interest Company in his name, which they hope will go on to help many others affected by young onset dementia. Marcus said it’s in its final stages and will soon be established.
“Me and Stuart’s family are going to set up a charity called Stuart’s Voice because Stuart lost his voice,” he said. “It will be to support families and guide them in the right direction, raise awareness and [provide advice if] someone needs help filling in forms such as for PIP or Universal Credit.
“We noticed there were no groups to support families of the patients; nowhere to just go and have a cup of tea when all you want is to have a chat with someone who is going through the same thing, rather than someone who doesn’t have a clue saying they ‘know how you feel’.”
Marcus added: “Stuart’s death just doesn’t make sense. You wouldn’t think that someone of Stuart’s age would get this [illness], and then because of who Suart was, you wouldn’t think it could happen.
“It still to this day doesn’t seem real. This is why I want to do this charity; it will keep me busy but it will also help others.” A local fundraiser, set up by Carnetown youth FC, is raising money in Stuart’s memory. You can support it here.
A spokesman for Cwm Taf health board said: “Firstly, our thoughts are with Stuart’s husband at this very difficult time. It is not appropriate for us to comment on an individual case, but we can assure local people that our health board works with partners to set high standards for the care and support provided to those living with, or caring for someone with dementia, and ensure their voices are heard.” WalesOnline approached Stuart’s GP practice, but the surgery would not comment on individual patients.
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