‘My mum had dementia at 29’

Louise and her grandmother, Julie

By Helen Briggs

BBC News

 

When Louise was three, her mother Zoe, who was then 29, was diagnosed with dementia. She is now 42, and living in a care home unable to walk or talk.

Zoe is one of the 17,000 people in the UK living with “early-onset dementia”, which is defined as cases diagnosed before the age of 65.

For Zoe’s family, the first signs something was wrong came when Louise and her sister were on holiday with their grandmother.

While they were away, another relative noticed Zoe – clearly confused – out in the park searching for her children.

Louise’s grandmother, Julie, says she still misses the everyday moments she can no longer share with her daughter – going shopping or a day at the beach.

“It’s one of the worst diseases going,” she says. “It’s all been wiped away.”

After being in and out of hospital for some time, Zoe was eventually diagnosed with early onset dementia.

Doctors could not say why it had happened to someone so young.

“Right at the outset, when she was first diagnosed, they said unfortunately sometimes these things happen,” says Julie.

“They’re like a one-off and Zoe’s the one-off.”

Zoe managed to live with her daughters at the start of her illness, but soon became too ill to cope.

She now lives in a care home in Ashford, and is on a special early onset ward, where she is by far the youngest person.

Louise was only a baby when Zoe became ill, so has few memories of living with her mother.

But she now raises funds for the Alzheimer’s Society, and recently took part in one of the charity’s Memory Walks. She hopes research will help prevent the same thing happening to another family.

“I can’t help my mum now it’s too late – there’s nothing anybody can do to help her. But if it means I can help other people then it’s worth it.

“It’s also to raise awareness. When I meet new people and I tell them how my life is, and I explain my mum’s got dementia, no-one I’ve met has ever really known what it is and how it affects people.”

The family is also having to cope with dementia striking again.

Julie’s mother Ruby, 85, was found to have Alzheimer’s five years ago, and is now in a care home.

She was diagnosed after slipping out of the house at night and walking several miles along the local canal.

Julie – who has therefore seen both her daughter and her mother battle the disease – now focuses on supporting her granddaughters.

“The miracle we’ve been waiting for, hoping to happen hasn’t happened,” says Julie.

“When the girls were little and asking, ‘Why is mum ill and when will she get better?’ we just had to say, ‘We’re hoping for a miracle’.

“We haven’t got our miracle, so perhaps we can help in other ways.”

 

Early onset dementia

People diagnosed with dementia under the age of 65 are often described as ‘younger people with dementia’ by health and social care professionals

Other terms used include ‘early onset dementia’, ‘young-onset dementia’, and ‘working age dementia’

In the UK, an estimated 17,000 people under the age of 65 are living with dementia

This number is likely to be an under-estimate, and the true figure may be up to three times higher

To be diagnosed at a young age is very rare

Getting an accurate diagnosis of dementia can take a long time for younger people, often due to lack of awareness that dementia can happen in younger people

Anyone worried about any problems with memory, at any age, should consult their GP

Source: Alzheimer’s Society

 

via BBC News – ‘My mum had dementia at 29’.

Blame the Name

Kate Middleton-20130724-58You don’t get many opportunities to give someone something that’ll define them for the rest of their lives; short of bottling them.  When you name a child it seems as if you hold their entire future in your hands. ‘Shall we call her Marigold… and hope she does?’ ‘Do you think Isaac will have a future in management consultancy?’ And there are no rules to guide you.

Willenkate have settled, fawningly, on great-granny’s daddy’s name. Okay, it was never going to be Keith or Kevin, Jermaine, Marius or Gaylord.  But I’d hoped they’d have the courage to go for a romantic royal like Arthur or Lear.  Perhaps, a sense of humour would prevail with a future King Dom, Kong or Kee.  Or how about that regal expletive: ‘king Hell? But no.  It’s George.

He still gets to choose a different ‘regal’ name when crowned; so my hopes for King Dong I are not entirely dashed.  But ‘George’ came quickly by royal standards, ‘William’ took a week, and ‘Charles’ remained nameless for a month. This was definitely a name-in-waiting rather than a ‘let’s see what he’s like before we settle on a…’ name.

Still, you’d better think hard if you’re coming up with a name that might change history or describe an era.  Would an ‘Andrew’ see off the putative Scottish dissolution? What about ‘Jock’? Will George VII wipe out Victoria, Edward, Elizabeth, Charles and William in the long view of history? Will future historians simply lump together the 18th to 21st centuries as ‘Georgian’? After all, it’s not like we’ve broken new cultural ground since the romantic period.

Even if most of us aren’t defining an epoch when we name our children, it’s just as treacherous, a minefield of politics and politeness. It’s often the first battle a couple have, unaware that everything from then on will be a repeat of this original conflict played out with the same blow and parry, smile and snide, and ever relentless compromise. In this ‘Baby X’ Factor, you are the judges and the try-outs are sung before your foetus has even developed earlobes. It’ll hear the taut music of your voices running through the baby name books as if you really haven’t already got a name in mind and you’re perfectly open to suggestions, honest.

In turns, you throw out the names of previous lovers, significant stalkers, the unpleasant, insane and ridiculous.  You’re bursting to promote your favourite but you know you can’t mention it too early; right now you have to make it look like you’re taking their idea of ‘Crispin-Aloysius’ seriously. By the third trimester, the competition has begun in earnest as, just like Prince George, August relations loom – Who needs be honoured? Who paid tribute to? Who looks good for some school fees? – before consigning the most likely to the ‘middle name’ roster because, unlike the Mountbatten-Windsors, there’s just too much shit involved in prioritising one partner’s family over the other.

Before long it’s the semi-finals and the fighting gets dirty. You’re down to a short list of names that both of you will just about tolerate and now you’re going to pull them apart in case they lead to teasing: ‘kids are cruel,’ after all. Something else which little Prince George won’t have to worry about, already possessing the perfect answer to, ‘Oh yeah? You and whose army?’

Now is the time to vote off your partner’s ludicrous pet names.  ‘But Richard will be Dick!,’  ‘Oh poor Titania!’  Those already suffering bully-baiting last names pay special attention. Ed Balls, think twice before you call your daughter ‘Rosie’, Mr. Dover don’t call your boy ‘Ben’ and please, Mrs. McKracken, don’t even contemplate ‘Phil’.

 

Should you go for a traditional name that might give a child security; or an eclectic one for individuality? Worst case is the unusual name that everybody else is going for – too many Nigellas really do spoil the broth.

Then, around the birth, a couple of contenders make the grand finale. Almost invariably, they are competing suggestions from the two judges. So now it’s a battle of wills. Who really wears the trousers? The countdown for the legal ‘registration of birth’ time-limit ticks away. If you blink, you capitulate, your mooted name disappears as if it was never there. The votes are counted and verified and before the first nappy has time to be rash, your baby’s sporting a name that suddenly seems inseparable from your own.

Or, if you’re as foolish as me, a name which the grandparents find so objectionable, they use, ‘your child’ or ‘darling’ for the next fifteen years. But, like my daughters, Roxana and Jezebel – historically both queens and whores – you can be sure your child will take the name, fit into it as if no other were possible, and do things with it you never dreamed of.

Marius Brill’s hilarious novel How to forget  is available in all good book shops.

via Blame the Name – KensingtonChelseaToday.

Stories and your Brain (from ‘How To Forget’)

“Stop or I’ll Shoot”

 The next time you hear this shouted, perhaps you will pause for a moment; if only to appreciate what a beautiful, well rounded and articulate phrase it is.  It is a warning honed to perfection, it is how all warnings should be: clear, concise and terrifying enough to scare the bejezus out of a bejesuit.

This book is a warning. I wish it could be as unambiguous as, “Watch Out” or “Duck” or “I’m going to have to work late at the office again dear.”  I wish it could be as brief as “Stop,” “Danger,” or that road sign which simply says “!” and waits to accrue its meaning after the event.  But at 437 pages, it is a little more complicated – and not the sort of warning that requires the same speedy attention as ones made by a weak bladder.

Unfortunately the same blinding ambition which propelled humanity forward in the exploration and domination of the planet, sprinting ahead in the race to evolve when other species couldn’t be bothered, inclines us to ignore most warnings in favour of learning from experience. Despite having developed our primitive guttural belching in to speech, despite having created the most fantastically complex warning system the planet has ever seen, today eighty percent of communication is still non-verbal and though you know when your boss, parents or teachers are talking, it’s almost impossible to listen to what they’re saying.

“Stop or I’ll shoot!” is more than a warning though.  It’s a whole story in just 4½ words; with a clear beginning, middle and end, conflict, drama, life, death, action, resolution. Stories are warnings but somehow we’re more amenable to them, more willing to go along with them.  We don’t just listen to a narrative; we ‘suspend our disbelief’, we put our natural scepticism on hold and experience it.  We allow ourselves to learn because we’re not being told.

Since long before Aesop, stories have been used as warnings when the clear threat is simply not enough.  And we love stories because with each one, we can forget everything for a while and be born again as wide eyed children unwittingly ready to learn life’s important lessons: not to talk to strange wolves in transvestite’s clothing; how true toffs will know if you have a pea in the bed; or how you can sell beef for beans, thieve your way out of poverty, murder the victim of your robbery and still live happily ever after.

But the true power of stories, and why this warning comes as one, lies in your brain.  More precisely in a part of your frontal lobes which it took a hungry capuchin monkey to discover.  He lived in a lab where, in a doomed attempt to bring a lighter side to vivisection, all the capuchins were given coffee related names. Starbuck had teeth the colour of earwax and halitosis like mustard gas and on the day of his discovery he had been grabbing at snacks all morning.  He’d been wired up to brain activity sensors, studying the components that register hunger before, and pleasure in receiving, food.  Valuable research for the hunger-inhibiting diet pill trade.  After all, we certainly don’t want an epidemic of obese monkeys.

At lunch time, Starbuck’s lab technician stopped for her break and happened to be absently watching the monitors as she reached for her sandwich.  Which is when she noticed an amazing thing.  As Starbuck watched her, she saw the same brain patterning light up on his monitors as when he had been reaching for food himself.  She quickly realised that he was empathising and she could see exactly the parts of the brain where this happened.

From that one sandwich, we not only found that monkeys were capable of empathy, so just how far men have evolved away from monkeys, but also that the brain’s ‘mirror neurons’ extend into the premotor cortex, where we weigh intentions, and our parietal lobe where we register sensation.

Now we know why we wince when we see another person punched.  Empathy is hard wired into our brains.  We experience just by watching others’ experiences.  We tell stories to stimulate the mirror neurons.  We watch a film and become the characters, we read someone’s story and for the time we’re in it, the connections within our own brains actually reshape, they begin to mirror the connections in the character’s brain.

So this book, like every story you’ve ever read, heard or watched, will alter the shape of your brain.  Whatever you think, this book is guarenteed to change your mind.