8 Dec 2014

How early onset dementia can devastate a family

Philip Grant talks eloquently about his wife Liza’s diagnosis with early onset dementia.  He describes the hostility,  the near breakdown of his marriage as he struggled to understand what was going on.

There was a lack of inhibition which mortified their twin boys Will and Ed.  She could no longer drive safely, nor cook.  She went from being fastidious about her appearance to wearing the same clothes over and over.

She was in her late 40s so doctors put it down to menopause.  And in some ways she aided them in this diagnosis because she did not tell them the whole story.

She did discuss memory problems but that, in fact, was not a major problem. It was only when Mr Grant, who lives in Hertfordshire, and his wife’s brother wrote to the GP with all her other symptoms that it began to click.

Four or five years after the symptoms began to appear, Liza Grant was diagnosed with behavioural variant fronto-temporal dementia. She was just 53.

About 44,000 people in the UK have early onset dementia. And yet dementia, in all its various forms such as Alzheimer’s, is most often associated with the elderly.

That is perfectly understandable, but charities like Alzheimer’s Research UK say that it means dementia affecting those under the age of 65 can take longer to diagnose, can be mistaken for other conditions like depression or the menopause, and care can be harder to find.

Now there is to be a summit at the House of Lords on Tuesday, bringing together MPS, peers, policy makers, charity groups, researchers, clinicians and families.

The aim is to raise awareness and discuss the issues that need to be addressed to improve the lives of those with dementia under 65.

Professor Nick Fox, director of the Dementia Research Centre at University College London, said early diagnosis is essential.

Although there is no cure for any of the forms of dementia, it is important to rule out other problems, he said, such as brain tumours. “Equally, it is important to get a diagnosis because people talk about the agony of not knowing.”

Mr Grant says when his wife was first diagnosed he expected “the full forces” of the care system like social services to swing into action. There was instead a vacuum, he says.

He talks, too, of the difficulty of finding a residential home for Liza once he could no longer care for her himself. The majority, he says, are for people in their 80s. They are not right for someone in their 50s, he said, who is still physically fit.

But mostly there was the dreadful impact on the whole family. “Initially it was devastating. The boys were very upset by it,” he said.

“It hit them at precisely the wrong time, when they were preparing for A-levels. It knocked me for six in ways I am only just beginning to recognise. There were pretty dark times.”

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