My father, Fred Jackson, receives the Imperial Service Order from His Excellency Sir Edward Youde, Governor of Hong Kong
This week is Lewy Body Dementia Awareness Week in the UK and about time too. Very few people have even heard of LBD. As a result, the terminal condition is often misdiagnosed, compounding the already myriad frustrations of sufferers, their families & friends. The slogan of the UK's Lewy Body Society is: "The more people who know, the fewer people who suffer".
If you'd like to learn a bit more about LBD and its consequences, please read on - and thank you for your time.
“Is that Dominick?” The woman was not merely anxious. Something akin to terror in her voice forced me awake. I peered at my watch. It was ten past five in the morning.
“It’s your father. Can you get yourself down here, quick as you like? No, not exactly. We’re in the car park. Off of Friarwood Lane.”
I spotted them immediately: Dad stood shivering, shaking his head vigorously on the pavement outside the hospital, propped up against a low wall. He wore only a grubby pair of regulation hospital issue pyjamas, which stopped a good six inches above his ankles. On his feet, I spied his old leather brogues, perfectly laced up over a pair of paisley socks.
It was clear that the three nurses in attendance were having no luck persuading him to return to the ward. Personally, I didn’t blame him. The very thought of a talking fire engine under the bed would have sent me scarpering down the fire escape and out, into the relative safety of the car park, too. He did, though, make sure he was properly shod. Well, as he later explained to me earnestly, he wasn’t going to get far, wearing just his slippers.
That was in September 2006. It was the first time that Dad experienced one of the vivid hallucinations which are the hallmark of Lewy Body Dementia, although it would be several months before he received this diagnosis. In a way, he was lucky. Some LBD victims never receive the correct diagnosis or, if they do, it is late in the day when anti-psychotic drugs routinely used for other forms of dementia may already have been prescribed; these can lead to serious side effects and, in some cases, death.
LBD – sometimes called 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. LBD 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 LBD as a distinct condition.
A major problem with diagnosis is that every sufferer is different and manifests different degrees of the characteristic symptoms. Some show no signs of certain features, especially in the early stages. Symptoms may fluctuate as much as moment-to-moment, hour-to-hour or day-to-day.
The main characteristics include general mental decline and lowered attention span. Dad’s diagnosis was ultimately confirmed by vivid hallucinations just like the one described above. He would often return to his navy days, quite literally reliving his D-Day experiences on Juno Beach as he unloaded the tanks of the 3rd Canadian Infantry. He was frequently adamant he was back in Hong Kong, where he served as a distinguished officer in the territory’s Fire Brigade for more than 30 years.
Most days, he was visited by my late brother who apparently sat chatting, at the end of his bed. I was relieved to hear that Rory, who died after a long illness in 1995, was back in rude health and as irreverent and infectiously hilarious as ever.
Possibly the strangest phenomenon was the imaginary cup of tea he often sat nursing all day, complete with extended pinkie finger. Now, if he had said that it was a glass of Bacardi & Coke that only he could see, perhaps more of us would have believed him...
I jest, but smiles are few and far between with LBD. My father was also intermittently, but severely, depressed for the first time in eight decades, during which he had had to bury both his wife and his son. He also began to suffer terribly from distressing fluctuations in autonomic processes, such as blood pressure, bowel and bladder function and body temperature.
Mini-strokes made him fall face-first through the front door of the bungalow, onto the concrete drive. Sheer shame prevented him from asking unfamiliar nursing staff for help, when his bowels failed more than once in the care homes where my stepmother would frequently send him for respite. Unsteady on his feet, he fell again and broke his arm late one night, when she had shoved him, just a tad too hard, in exhausted frustration.
According to the Alzheimer’s Research Trust, 820,000 people in the UK are currently living with dementia with LBD thought to account for up to five per cent of this total. Yet LBD remains perversely little known and still barely understood.
Despite his 2007 diagnosis, Wakefield Family Services who had regular and frequent responsibility for my father during the last three years of his life continue to insist that my father was 100 per cent compos mentis and remained entirely lucid until the day he died in December 2008. This is a central tenet of the WFS report into their dealings with my father. My fight to get Wakefield to correct this report's many material errors of fact and to expunge the serial and serious libellous and defamatory references contained therein continues. Watch this space.
This stubborn insistence is based, I presume, on the fact that Dad, a man who, in his middle age, taught himself to read, write and speak Chinese, despite a truncated formal education, routinely scored 18 out of 20 in the regular mini mental tests for which he assiduously prepared. You know the type of thing. "What's your address, Fred? Do you know the name of the Prime Minister? Can you remember your date of birth? Who's a clever boy then!"
Strangely, Clare, his favourite mental health nurse, never actually visited Dad at the same time as my dead brother did. Funny that, when you come to think of it.
The Lewy Body Society has a Facebook page here. In the United States, the LBDA does a similar, sterling job of raising awareness.
