Six years of arguments before the diagnosis: Helen and Clive's dementia story

Helen Beaumont, 75, spent years losing patience with her husband before she discovered that the change in him was not personality, age or a failing marriage, but a terminal brain illness. Clive Beaumont was in his early 40s when he began to change, and he was only diagnosed at 46 — six years after he first walked into a GP surgery with symptoms. He died in 1999, aged 51.

The Manchester-based woman married Clive when she was 21, and the couple had their two children roughly two decades later. She had expected parenthood to shake things up between them, and it did — but not in the way she imagined. Instead, she recalled, her husband stopped listening, became unreliable, struggled to hold down a job and was eventually handed a diagnosis of depression that, in the end, was never the real story.

Clive had spent more than two decades working for the army. Helen described him as a calm, level-headed and "very active guy" who used to run marathons, she said, even before it became fashionable. "Clive was unflappable," she said. "He reckoned he failed if he lost his temper." Nothing about his earlier life suggested what was to come.

As he approached his 40s, however, the small shifts began accumulating. Helen remembers making plans that Clive would then forget, including forgetting he was looking after the children. When she confronted him, his explanation was blunt: "I'm just growing old" — and he was, as she points out, in his early forties at the time. She had never heard of dementia in younger people, but she says she "knew there was something wrong" long before anyone else agreed with her.

Clive first went to his GP about his symptoms at the age of 40 and was told he had depression. Two years later, at 44, he was made redundant. He took on odd jobs in an attempt to get back into permanent work, but he struggled, and Helen ended up completing his job application forms herself. "He couldn't do it," she said.

The day-to-day frustration was easier to describe than to explain. He would come back from shopping with cream and chocolates instead of the fish fingers and bread she had asked for. The two of them would have a conversation, only for it to appear, moments later, as though it had never happened. "I was cross with him — really cross with him for quite a lot of the time," Helen said, explaining why she had assumed he was "just being a grumpy middle-aged man".

She even raised her fears with a medic friend. "I think there's something wrong. He might have something like dementia," she told her. The response was that he could not possibly have it, not at his age. In hindsight, she said, you ask yourself how you could have been so silly. In the moment, nobody had offered her another explanation.

Clive also concealed part of what was happening. Helen said he never admitted to her that he was having problems with reading and writing, and she noted that he covered up other things too. "You can't really tell at what stage somebody's behaviour changes," she said, adding that younger people in particular are always going to be difficult to diagnose.

Eventually, at 46, he was referred for neurological tests. Six months after he was sent to a neurologist, Helen received a phone call telling her, with an apology, that her husband had pre-senile dementia — as the condition was then referred to. "There was no treatment and very little support," she said. "Clive was never depressed," she added. "The symptoms had been confused."

Helen said that for a long time medical professionals refused to accept that a healthy man in his early 40s could be living with dementia. The six-year gap between his first GP visit and his diagnosis is at the heart of her account, and of her frustration: had he been diagnosed sooner, she said, they could have had "at least two years when we weren't fighting all the time".

The condition she was not familiar with is one the NHS describes as an ongoing decline of brain functioning. Symptoms can include memory loss, slower thinking speed, and reduced levels of understanding, judgement and mood. What made Clive's case atypical was not the symptoms themselves but their timing, and the widespread assumption — held by Helen, by her friend and, she believes, for a time by the medical system — that dementia belonged to old age.

According to Dementia UK, 7.5% of people with dementia in the UK have young onset dementia, meaning their symptoms began before the age of 65. Young onset dementia most often develops between the ages of 45 and 65, but it can affect people of any age. That is a small share of those living with the condition, but it represents a large group of people in the middle of working life, often with children still at home and, as Helen's experience shows, a spouse left to interpret changes that have no obvious explanation.

Caring for Clive, Helen said, was like having a third child. Her account of shopping lists, forgotten conversations, completed job applications and repeated arguments paints a picture of years lost to a diagnosis that had not yet been made — and of a marriage under strain at precisely the point when both of them needed support most.

Since Clive's death in 1999, Helen has worked as a dementia researcher, raising awareness of young onset dementia and continuing his legacy through her charity, The Clive Project. She keeps telling her story because, she says, there is still "more to be done" to help dementia patients and their families.

Her central point is not that a diagnosis would have cured Clive, but that it would have explained them. An earlier diagnosis, she said, might have given them back at least two years in which they were not fighting — years in which the person Helen married could be understood, rather than resented, and in which a family could be supported by something other than suspicion.