A Happier Ending: If Dementia Care were a Country.....Guess how Big it would Be? (& then Guess again...)

Uncle Fred & Uncle Ted in 2006 (a few months before Dad's Dementia with Lewy Bodies was correctly diagnosed)

Today is World Alzheimer's Day. Or did you forget? Boom Boom!!

Personally, I tend to be against singling out one day of 365 to remind us of any particular cause. I am rather more for a constant, even if low level, general awareness of the problem in focus.

However, in our 24/7 global, increasingly trivialised, news cycle, perhaps these annual events do serve some sort of purpose? I wasn't even aware it was World Alzheimer's Day, until I woke up this morning to the gently hectoring tones of the Today Programme on BBC Radio 4, discussing a new report on the global costs of dementia care. The statistics were so scary, I immediately marshalled my attention.

According to the report, commissioned by Alzheimer's Disease International (ADI), the worldwide costs of dementia will reach US$604 billion in 2010, which represents more than one per cent of global GDP. If the latter figure means nothing to you, look at it this way: if dementia care were a country, it would be the 18th largest world economy, ranking between Turkey and Indonesia. If dementia care were a company, it would be the largest, by revenue, in the world; bigger than Wal-Mart, bigger than Exxon-Mobil.

As populations continue to age, ADI also predicts that dementia cases will almost double every 20 years - to around 66 million in 2030 and 115 million in 2050 - with much of the rise in poorer nations. Low-income nations currently account for under one per cent of total worldwide costs, the report said, but have 14 per cent of the cases of dementia, while middle-income nations account for 10 per cent of the costs and 40 per cent of the prevalence.

Scary stuff, isn't it? Ageing populations and soaring rates of dementia have huge economic and social implications and the sheer scale of the problem means that most of us will be affected - in one way or another.

Sadly, rising rates of dementia also mean rising rates of vulnerable adult abuse. It is already relatively easy to take advantage of a frail and vulnerable old person.

It is exponentially easier to take advantage of one who may not be entirely in the here and now. This is exactly what happened so frequently with my father, whose LBD hallucinations took him back to Hong Kong, to his Navy days and D-Day in particular and also to happier times, when my brother Rory was alive, on a regular basis.

Dad & Rory in London's Fleet Street (both very much alive...)

I was all set to write an article for a national newspaper to mark Elder Abuse Awareness Day last June. Sadly, and mainly for legal reasons, it was not published. Once these legal restrictions have been resolved, I sincerely hope I am able to finally tell my father's story - as it deserves to be told. Until then, please keep reading.

WHY ALL OF US SHOULD WANT "A HAPPIER ENDING"

In December 2008, my father, Fred Jackson ISO, QFSM, CPM, finally passed away at the age of 85. Sadly his final months were blighted by a still rare and not fully understood form of Alzheimers, called Dementia with Lewy Bodies.

Even more sadly, this condition enabled several people whom he should, by rights, have been able to trust, to take advantage of his loyalty, generosity, frailty and confusion. My brave Dad, D-Day veteran, distinguished fire fighter, became yet another victim, not just of the rising tide of senile dementia, but of the burgeoning phenomenon of elderly and vulnerable adult abuse.

Child abuse is a heinous crime and deserves every headline, no matter how lurid, it receives. And yet; there is no financial incentive to abuse a child. A frail, not always 100 per cent lucid, elderly or disabled person is just as defenceless as a small child. The fact that the older victim may be in receipt of an attractive pension or live in a mortgage-free home makes them even more vulnerable - particularly in the current economic climate.

My hope for this blog is relatively modest: simply to raise awareness of the growing problem of vulnerable adult abuse and who knows, maybe even start to tackle the problem in a more concrete way? We shall see. Sincere thanks for reading.

What is Dementia with Lewy Bodies? (DLB)

DLB is a form of dementia which shares symptons with both Parkinson’s and Alzheimer’s Diseases. It is named after Alois Alzheimer’s colleague, Frederick Lewy (1885-1950) who, in 1912, identified the eponymous ‘bodies’ or abnormal protein deposits in the brain which disrupt normal function. DLB was virtually unknown until around a decade ago, when scientists in the United Kingdom, Japan and the U.S. collaborated on the pioneering research which finally established DLB as a distinct condition.

A major problem with diagnosis is that every sufferer is different and will manifest different degrees of the characteristic symptoms. Some will show no signs of certain features, especially in the early stages. Symptoms may fluctuate as often as moment-to-moment, hour-to-hour or day-to-day.

The main characteristics include general mental decline and a lowered attention span. My father’s diagnosis was ultimately confirmed by his recurrent and vivid hallucinations. He would be convinced that he was back in the Navy or in Hong Kong; he frequently saw my late brother, sitting, smiling, on end of his bed. He was also, for the first time in eight decades, severely depressed. DLB also brings with it distressing fluctuations in autonomic processes, including blood pressure, bowel function and urination and body temperature.

In the UK alone there are more than 700,000 people living with dementia, of whom around 100,000 are thought to have DLB. This total is projected to rise to 1.8 million by 2050. In the EU, five million people suffer individually – while the number of people affected increases exponentially when you include family and caregivers.

The Lewy Body Dementia Association is a U.S. based not-for-profit support and research group. In the U.K, the Lewy Body Society does a similar job. Their motto is: "The more people who know, the fewer people who suffer...."

About Me

Dominique Jackson is a freelance writer & translator with more than 20 years' experience of the Fourth Estate. She studied Modern & Medieval Languages at Magdalen College, Oxford and trained at Reuters News Agency after graduating. She worked initially as a foreign correspondent, reporting from Latin America, South East Asia, including her native Hong Kong and the Benelux countries, Spain and Portugal, and latterly, as a writer and editor on London's Fleet Street.

Dominique's work has appeared in publications as diverse as the Guardian, the Spectator, the Financial Times, Marie Claire and Avenue magazines, the Times Educational Supplement, the Volkskrant & the South China Morning Post

Many thanks for reading!

A Happier Ending

If Dementia Care were a Country.....Guess how Big it would Be? (& then Guess again...)

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Uncle Fred: 1923-2008

WHY ALL OF US SHOULD WANT "A HAPPIER ENDING"

What is Dementia with Lewy Bodies? (DLB)

About Me

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