From telegraph.co.uk December 2008

"People started avoiding us" – a retired scientist talks about the isolation that Alzheimer's Disease can bring.

As the Government plans an ambitious new five year plan to help Alzheimer's sufferers, one couple tell their story.

By Victoria Lambert
Last Updated: 11:02AM GMT 22 Dec 2008

Graham is a retired scientist and university lecturer in quantum chemistry and mathematics at York, author of four textbooks and more than 30 scientific papers, but he can no longer read books, or decipher telephone numbers. "And glass doors are a nightmare," says Susan to her husband, "you can't cope with those at all, can you?" "Oh no," he says cheerfully. "I don't know where to walk. And goodness knows what people think when they see me trying to post a letter – completely unable to find the slot."

From the couple's banter, you would never imagine that Graham's sight problems actually stem from a type of early-onset Alzheimer's disease known as PCA (Posterior Corticol Atrophy) or Benson's Disease – the same condition that has affected author Terry Pratchett. Today the Government has announced that every GP is to be trained to diagnose dementia under an ambitious five year plan to give patients and their families support and up to date care.

As the Doggetts have learnt, one of the worst side-effects of dementia is the isolation it brings for sufferers but their families. A recent report from the Alzheimer's Society revealed that 50 per cent of Britons think there is a stigma surrounding dementia, compared to only 25 per cent thinking one is associated with cancer.

Susan talks of people avoiding them, not knowing what to say – and looking around a room to see that, once again, Graham has been left standing alone. She hates the word 'dementia' and won't use it. "It has awful connotations and it is simply not true of Graham. People prejudge him, which is terribly unfair."

For Graham is far from a typical image of the Alzheimer's sufferer. His mind remains sharp, and his memory remarkably good; the problem is his vision. In PCA, deterioration occurs around the back of the brain, affecting the neurotransmitters that pass messages to the eyes first, so that ordinary objects are not recognised. In 2001, Graham realised something was wrong when he could not make sense of complicated mathematical symbols in a paper he was co-editing. But optical specialists could not find a reason, suggesting it could be due to anything from a haemorrhage behind the retina to cancer.

It was only in 2004 after the couple had moved from York to Berkhamsted to be closer to their grown-up children Claire and Alastair, that Graham was referred to the Royal Free hospital in London where, a year later and after extensive tests, a neurologist diagnosed Alzheimer's. Graham is now taking Aricept, via a medical trial, and it seems to be stabilising his illness. Meanwhile, the couple remain positive. "We try to do something enjoyable every day," says Susan, "and not to worry too much about things that don't matter like housework."

They have no idea how the disease will progress, or over what kind of time scale. Graham now needs help dressing – he finds sleeves, buttons and pockets confusing – but he can, and does, much of the cooking. Susan has been careful not to infantilise him. "It's ironic," she admits, "but I was almost pleased when something was diagnosed; it was much worse when he was not functioning properly, but I didn't know what to blame. I thought: was it the stress of retiring? was it depression? I often lost my temper and felt guilty. Now I understand."

There are still problems, but Susan is keen to stress that people should treat those with dementia normally.

"People do seem to avoid chatting to us, they don't tend to engage us in conversation; perhaps they are worried we can only talk about Alzheimer's or that as we don't go to the theatre or the cinema or on lots of holidays we wont have anything interesting to say. I notice that men, particularly, are more likely to avoid Graham – they might have a word with him but then a good chat with someone else. Women tend to be more empathetic. But there's no doubt our social life has become very restricted.

"Restaurants can be difficult too so now we avoid them. Graham does knock his food about or a wine glass will go flying, and I feel people are watching us."

Neil Hunt, Chief Executive, Alzheimer's Society understands the Doggetts' concerns. "Stigma stems from fear, misconception and a lack of awareness of dementia among professionals and the public," he explains. "Dementia is not a normal part of ageing; it is caused by physical diseases of the brain and robs people of their lives.

"Only a third of doctors feel they have enough information to diagnose and manage dementia. People with dementia have told us that they lose friends after a diagnosis; that people start talking to their partners instead of them and neighbours have crossed the street as they approach."

Sufferers have told the Alzheimer's Society of their frustration. One, Tricia Davies, a grandmother from Gwent, says: "The name and the illness don't go together – I am not demented – I still sense things, I feel things. We're not lepers, not people to be ignored, we still want to be talked to." Heather Roberts, 53, from Derby adds: "I have to be careful who I tell; some people have dropped me like a stone."

Perhaps one of the most painful incidents occurred when Graham and Susan returned to York for the first time to see friends since moving South. He had been keeping touch with his former colleagues but his illness had affected his ability to type. So he had been, unwittingly, sending emails full of random letters rather than recognisable words. His friends, who had been receiving these, expected the worst. "It took them quite a while before they could talk to Graham normally," says Susan. "They thought he had lost his mind – not just his ability to use a computer."

For more information: The Alzheimer's Society; tel: 020 7423 3500; www.alzheimers.org.uk/outoftheshadows

http://www.telegraph.co.uk/health/3900288/People-started-avoiding-us---a-retired-scientist-talks-about-the-isolation-that-Alzheimers-Disease-can-bring..html