Knight casts spotlight on Alzheimer's battle (From Bournemouth Echo)

Knight casts spotlight on Alzheimer's battle

7:00pm Wednesday 18th February 2009 in Search By Sam Revell

THE multi-million-selling author Terry Pratchett has collected his Knighthood from the Queen for services to literature.

He was Britain’s most read author in the 1990s and is now second only to JK Rowling. Best known for his Discworld series of 36 science fiction novels, the 60-year-old has achieved immense success in his chosen career, but now faces his biggest challenge yet.

That’s because just over a year ago Sir Terry became one of the 700,000 people in the UK who have been diagnosed with Alzheimer’s, the most common cause of dementia.

His literary works have always been centred on fantasy and a razor-sharp humour, but Pratchett’s recent TV documentary, Living With Alzheimer’s, was a serious insight into the difficulties faced by those who suffer from the disease and those who try to care for them.

Read Ed Perkins' opinion about Alzheimer’s Disease, see the Related Links to the right of this story

He also recently donated £500,000 of his own money to the Alzheimer’s Research Trust, which he feels is massively under-funded and has pledged to do all he can to raise awareness of the debilitating disease that could have affected over a million people in the UK by 2021.

Former ITN news reader John Suchet has also recently spoken publicly about his struggles caring for his wife Bonnie, 67, who began developing symptoms of the disease in her early 60s and has deteriorated ever since.

“By and large her morale is good. She’s happy. She smiles at me,” he says.

“I promised myself after the diagnosis, ‘Right John, you will be an understanding husband – you will love and cherish your wife’, but life just isn’t that simple.

“It’s a culmination of little things – used dinner plates going straight back onto the shelf instead of into the dishwasher or being wiped dry while they were still dirty. Every now and then you just explode.

“We have been to every place that Beethoven had ever been to that is still there to be seen. She loved it. I loved it. But now she looks at the books (about Beethoven, written by Suchet) and says ‘Bloody Beethoven – I’ve had enough of him.’ “I have to stop myself from saying, ‘You weren’t like that before.’ I have to remind myself it’s not my Bonnie who’s talking. She’s gone. And yet she’s still there physically.”

During an emotional interview Suchet told of the help he’d received from an Admiral Nurse to understand what Bonnie was going through and how best to care for her and deal with the stresses that he experiences while doing so.

“There are only about 70 Admiral Nurses in England but there should be 70,000 of them,” said Suchet.

Neil Hunt, chief executive of the Alzheimer’s Society agrees whole-heartedly with Suchet, saying: “It is deeply distressing that John has been pushed to the brink in his efforts to deliver the best care for his wife.

“Like John, many carers need more support. Dementia is not just a natural part of ageing; it is a physical condition of the brain that robs people of their lives. “Sadly, John and Bonnie are not alone. As the population ages, over a million of us will be diagnosed with dementia in the next 10 years.

“We urgently need to invest more to care for people today and find a cure tomorrow.”

• WHEN doctors diagnosed Kay Hopkins with Alzheimer’s disease at just 49, she reacted with a mixture of shock and an odd sense of relief.

Despite the frightening prognosis, with consultants giving her just five to 10 years to live, at least Kay finally knew what she was dealing with.

For more than a year the registered nurse had been suffering frightening memory loss, anxiety and confusion, but doctors had attributed her symptoms to clinical depression.

Kay, from Corfe Mullen, says: “It came as a massive shock because of my age. I’ve worked with elderly patients most of my life, many of them with dementia. I know the disease... I know what is coming.”

Out of the 700,000 people suffering from dementia in the UK, just 15,000 are aged 65 or less.

Husband Chris said: “In many respects when we heard what it was, although we realised it was a life sentence, it was a relief because we knew what it was.”

Kay and Chris, who have three children, Jonathan, 28, Matthew, 25, and Sarah, 23, are now determined to enjoy the time they have left.

They recently went on a cruise of the Norwegian Fjords in the hope of catching a glimpse of the Northern Lights.

Chris said: “This is a trip we’ve always wanted to take, so we’ve got to take it now. We are trying to live in a very positive way. We want to make the most of the life we have left together.”

Recalling her early symptoms, Kay said: “I would get lost when I went out in the car.

“I just didn’t know left from right, and at one point I had to call to base to be talked back. It was frightening.”

The Hopkins have decided to write a book on their experiences, with Kay writing from a medical professional and patient point of view, while Chris writes as a carer.

They’ve even asked their children, friends and doctors to contribute. And Chris stressed its not all doom and gloom, with Kay’s early symptoms raising a few smiles.

“We’ve got four jars of mustard at the moment because every time Kay went shopping, she would think ‘Oh, I must get some mustard.’ Luckily we like mustard and we laugh about things like that now.

“We are just trying to meet this in a very positive way. Who really knows how much time we have left together?”