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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4 reader comments

  1. Mike Frain says:

    Well done Philip on having the courage to appear on TV and totally sum up the suffering that this can cause to young people and their families. Mary, my wife has early onset Alzheimer’s where she is totally dependant upon me yet she was only diagnosed this year after 5 years of symptoms and misdiagnosis from her early 50s. Surely there has to be a better way.

  2. Tessa Gutteridge says:

    So frustrating to hear of Phil and Mike’s experiences, so painful … our charity YoungDementia Uk and a group of people living with young onset and passionate professionals have kicked off a national Young Onset Dementia Network this month to crank up the changes that are needed.
    We must not tolerate the misery and wasted lives any more.

  3. Lucile says:

    Hello from Canada. My brother is recently diagnosed though he’s apparently had symptoms for several years. We are somewhat estranged. He is 61. Our father died at 70 of what was called Alzheimer’s but which I know think was frontemporal dementia. I am terrified of the possible genetic component of all this. Finding other people is helpful so thank you

  4. Liz Bishop says:

    Fantastic that families can contribute to this summit. Dementia has a far reaching effect in the wider family circle.Our government needs to bear this in mind within the services that it has to offer. EARLY DIAGNOSIS WOULD HELP FAMILIES not just the sufferer who often worries terribly about the consequences of their diagnosis but is helpless to do anything when they get to the diagnostic stage as it is at present..Ours was a farming family and the sufferer was my father. My brother maintained the business and helped my dad to continue at work long after anyone would have been able to do so elsewhere in the world of work.It was a great sacrifice and his own family eventually paid a heavy price especially when the farm had to be sold and a new career had to be found. Dementia isn’t just about one person its about community’s I firmly believe that families want to be able to help their family members who have dementia much more than they can or are permitted to do at the moment. Care needs to be provided close to home. Night support must be available .Counseling and information needs to be given early and help needs to be available to the family as well. Good quality home care needs to be available and families must be allowed to be part of that.For instance the place where your loved one lives should be welcoming to the family too, rather than treating them with suspicion when they complain about care, which is their proper role when trying to protect a loved one etc Many want to care at home but are not allowed to have the support due to lack of money.Yet it must be cheaper to give home care in lots of cases !
    Sufferers want their family with them and often have opinions even if they cant be voiced and many can still understand what is being said even if they cannot respond themselves. Dementia care is like the cancer care was in the 1950,s and no, David Cameron was not the first to say it I was!! WE URGENTLY NEED EXPERT END OF LIFE CARE too. No more statements like the one in my fathers notes when he was drowning in secretions (a problem denied by staff.) “No suction required, due to dementia.” . The patient with dementia must be cared for with respect and dignity their is no such thing as inappropriate care actions, just because someone has dementia. Just a bit of professional discussion around the subject with family instead of avoiding them would be best and better.
    I wait with baited breath to see what the summit achieves on Tuesday.

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