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Helen said she thought her husband was “just being a grumpy middle-aged man” [Helen Beaumont]<\/p>\n
Helen Beaumont spent years arguing with her husband before realising he had a terminal illness.<\/p>\n
Helen, who lives in Manchester, married Clive when she was 21 and the couple had their two children two decades later.<\/p>\n
While she expected parenthood to change things – when elements of Clive’s personality appeared to shift she spent years frustrated.<\/p>\n
She wondered why he had stopped listening, had become unreliable, was unable to get a job and had been diagnosed with depression.<\/p>\n
About five years later, when Clive was 46, he was diagnosed with young onset dementia. He died aged 51.<\/p>\n
Helen, now 75, said if Clive had received an earlier diagnosis they could have had “at least two years when we weren’t fighting all the time”.<\/p>\n
Since Clive’s death in 1999, Helen has been working as a dementia researcher, raising awareness of his condition and continuing his legacy through her charity, The Clive Project.<\/p>\n
She continues to tell her story because there is still “more to be done” to help dementia patients and their families, she said.<\/p>\n
Helen described her late-husband as a calm, level-headed and “very active guy” who used to run marathons, even “before it was popular”.<\/p>\n
“Clive was unflappable,” she said.<\/p>\n
“He reckoned he failed if he lost his temper.”<\/p>\n
But as Clive approached his 40s things began to change.<\/p>\n
“You can’t really tell at what stage somebody’s behaviour changes,” she said.<\/p>\n
“Younger people in particular are always going to be difficult to diagnose.<\/p>\n
“And he covered up some things. He never admitted to me that he was having problems with reading and writing.”<\/p>\n
While Helen had never before heard of dementia in younger people, she said she “knew there was something wrong”.<\/p>\n
“I would make plans and he would forget he was looking after the children,” she said.<\/p>\n
“We had very many arguments about it.<\/p>\n
“He said, ‘I’m just growing old’ – and he was early forties then.”<\/p>\n
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Clive first went to the GP about his symptoms at age 40 and he was diagnosed with depression [Helen Beaumont]<\/p>\n
Clive was made redundant when he was 44 and after taking on odd jobs, he struggled to get another permanent role.<\/p>\n
“I had to fill in his job application forms,” Helen recalled. “He couldn’t do it.”<\/p>\n
Helen said Clive’s symptoms began to lead to tensions between them.<\/p>\n
“He went shopping, he bought things like cream and chocolates instead of fish fingers and bread,” she said.<\/p>\n
“And I just couldn’t understand it.<\/p>\n
“I was cross with him – really cross with him for quite a lot of the time.<\/p>\n
“We could have a conversation and then it was like it had never happened.”<\/p>\n
“I didn’t know it was dementia.<\/p>\n
“With hindsight you think, ‘How could I have been so silly?’.<\/p>\n
“But I talked to a medic friend and I said, ‘I think there’s something wrong. He might have something like dementia’.<\/p>\n
“And she said he couldn’t possibly – not at his age.”<\/p>\n
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Clive’s diagnosis came six years after he first went to his GP presenting symptoms [Helen Beaumont]<\/p>\n
Finally, when Clive was 46, he was sent for neurological tests.<\/p>\n
“Clive was never depressed,” Helen said. “The symptoms had been confused.<\/p>\n
“For a long time they refused to admit that a healthy man in his early 40s could have dementia.<\/p>\n
“Eventually he got to see a neurologist and six months later I was told over a telephone call that he was very sorry to say my husband had pre-senile dementia, [as it was then referred to].<\/p>\n
“There was no treatment and very little support.”<\/p>\n
Young Onset Dementia<\/p>\n
Dementia is associated with an ongoing decline of brain functioning<\/p>\n
Symptoms can include memory loss, slower thinking speed, and lower levels of understanding, judgement and mood, according to the NHS<\/a><\/p>\n The condition is often associated with old age, but according to Dementia UK<\/a>, 7.5% of people with dementia in the UK have young onset dementia, meaning their symptoms began below the age of 65<\/p>\n Young onset dementia often develops in people between the ages of 45 and 65 but can affect people of any age<\/p>\n Helen said caring for Clive was like having a third child [Helen Beaumont]<\/p>\n For about a year Helen balanced her job with raising her then three and four-year-old children – while also caring for Clive.<\/p>\n “I just had three children,” she said. “Two of them I could pick up when I wanted them somewhere where they weren’t. And Clive, I had to cajole along.”<\/p>\n Helen said the family were able to do normal activities like going to the park or the cinema for some time – but then Clive became more difficult to care for.<\/p>\n “There was a time where we were on the M14 and he tried to get out of the car,” she said.<\/p>\n “And in he last couple of years he could be quite aggressive.”<\/p>\n She said when he left the house and went missing she knew he would need full-time care in a residential home.<\/p>\n “Fortunately, somebody noticed how uncomfortable he was walking and asked him in for a cup of tea and then got in touch with the police,” she said.<\/p>\n Clive in 1996 , three years before he died [Helen Beaumont]<\/p>\n Helen said she felt “fortunate” that the NHS had covered the costs of social care for Clive.<\/p>\n Nonetheless, finding care for Clive was not easy.<\/p>\n “He was moved three times,” Helen said. “And as he got worse, it got more difficult for them to manage him.<\/p>\n “Looking after somebody like Clive counts as social care – not medical care.”<\/p>\n Five years after his initial diagnosis, Clive died in a residential home in 1999, aged 51.<\/p>\n After Clive died, Helen said: “I was very depressed.<\/p>\n “I kept going. It took me a long time to get back to having some joy in my life”<\/p>\n ‘Years of anguish’<\/p>\n In 2008, at the age of 58, Helen made a big change.<\/p>\n “My daughter and son had left home to go to university and I moved from Oxford to Manchester to pursue a new career as a dementia researcher,” she said.<\/p>\n She did a PhD in 2015 and specialised in using magnetic resonance imaging to investigate brain changes in people with dementia with the aim of improving diagnosis.<\/p>\n “What brings me to the university every day is a determination to ensure other families don’t have to go through the years of anguish I went through with my husband Clive,” she said.<\/p>\n According to Dementia UK<\/a>, the average waiting time for a diagnosis of young onset dementia in the UK is just under four years and five months – as opposed to an average of just under two years and two months for a diagnosis of dementia in over 65s.<\/p>\n Helen said she felt “very sad” that she had spent so many years being angry at Clive for something which had been out of his control.<\/p>\n “I was trying to get him to do things that he was no longer capable of doing.<\/p>\n “It makes me feel very sad.<\/p>\n “And that’s why I go out and talk to people now so that people can understand.”<\/p>\n Helen said awareness of young onset dementia had grown since the 90s – but diagnoses still took too long.<\/p>\n “It still takes four or five years to get a diagnosis and I’m absolutely certain it’s no easier now than it was back then to find suitable care, she said.<\/p>\n “There are treatments becoming available.<\/p>\n “But you will not treat it if you can’t diagnose it.<\/p>\n “There is more to be done.”<\/p>\n Listen to the best of BBC Radio Manchester on Sounds<\/a> and follow BBC Manchester on Facebook<\/a>, X<\/a>, and Instagram<\/a>. You can also send story ideas via Whatsapp to 0808 100 2230.<\/p>\n Related internet linksMore like this![\"Clive](\"https:\/\/www.newsbeep.com\/ca\/wp-content\/uploads\/2026\/09\/https:\/\/media.zenfs.com\/en\/bbc_us_articles_995\/d86458fa40ec94b40c83b2df3f8f8a84.png\"\/)
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