Early onset Alzheimer’s

Five years ago, Heather Roberts was recovering from a thyroid problem which had left her confined to a wheelchair. The teacher from Derby was trying to return to her business and maths classes – but all was not right.

“I’d always been a very organised, very on-top-of-things kind of person, but now I was having problems with little bits and pieces,” says Roberts. “The crunch came when I turned up to give a lecture one day, and found there weren’t any students. Turned out it was the wrong day and the wrong time. That was like being hit by a brick wall.”

Having grown up with a grandmother who had dementia, she took her suspicions to her doctor. But even after being referred to a neurologist and a psychiatrist, and being diagnosed as suffering from depression, she was told that she was “too young and too bright” to have dementia. Three years later, Roberts was finally told that she had Alzheimer’s – she was 50.

Strategy

It is stories like this that have prompted the development of a National Dementia Strategy, a government project that will be published in October. It will focus on improving diagnoses, quality of care and awareness of dementia. Andrew Chidgey, head of policy at the Alzheimer’s Society, says better information is crucial to early diagnosis.

“GPs, social workers and care home workers need to understand the symptoms of dementia that’s important for people to get a diagnosis. At the moment, only a third of people are getting a formal diagnosis.

“We would like to see developed memory services which allow people easy access to the specialist help and advice that they need. The diagnosis can then be made accurately and sensitively. Some places are already doing this very well, but it needs to be done more consistently.”

Diagnosed

Roberts was diagnosed with early stage Alzheimer’s, which is gradually affecting her maths and writing ability. “My brain cannot process the information it is presented with. I used to be able to touch type on the computer, but now I struggle to type with one or two fingers. I’m not doing things to be awkward and difficult I’m doing them so I can carry on as I am.”

Bill Wilson also has early stage Alzheimer’s, which was diagnosed in June 2006 when he was 56. He had just taken a job as a warehouse manager, but was sacked after losing the company a lot of money. “It was taking on board the new descriptions the new suppliers and customers,” says Wilson. “I just wasn’t recognising the problems I’d got, so I was quickly despatched.

Mobile

“It’s like now, on a bad day, I can search for a mobile phone high and low. Then one of the family will very cleverly tell me, ‘it’s in your hand, Bill’.”

He copes with his short-term memory loss with routine. “I have to take my tablets at the same time of day. Everything has to be in the right place. If I go out of my routine, I will be guided. They won’t be sarcastic. They’ll say, ‘where do you normally find it Bill?’, and at that point I will look at my hand. It’s the little, subtle helping that gets you through the day.”

His wife Pat says he is coping well now but, as an ex-Royal Marine and athlete, he will be seriously challenged once he loses his independence. She thinks it is easier to deal with contemporary challenges rather than consider the future. “We don’t talk about it. He just wants to carry on while he can do things. I talk to the children about it because that time is going to come when he won’t know who they are.”

Ambassodors

Roberts, by contrast, is in the unusual position of having experienced what the future may hold for her. While she is now able to cope well with the medication she takes, in the past she has struggled to cope when she has been between drug regimes. “It got to the point that I didn’t want to go out, I didn’t want to talk to other people. I just wanted to sit and watch the fish tank.

“I don’t know when the future will come nobody knows. The progress of my illness is quite slow and the fact I am on drugs gives me a quality of life. But I will eventually become very ill with Alzheimer’s.”

Before that happens, both Roberts and Wilson are trying to get something positive out of their situation by being ambassadors for the Alzheimer’s Society. As they are in the early stages of the disease and are both determined and eloquent, they are in a position to try to remove the stigma of dementia by publicly talking about the disease.

Awareness

Improving awareness of dementia is part of the national strategy and, while public awareness is improving, says Chidgey, a wider range of professionals need to know more about dementia, including social workers, care assistants and physiotherapists.

“Dementia has an impact on everything someone does, so anyone who comes into contact with them has to understand it,” he says. “We’ll be working with the royal ­colleges and curriculum bodies in the next few years to improve skills. But there’s a responsibility on the professionals to improve their understanding.”

Wilson says people need to have more patience and understanding. “People visualise – and I’ve had it said to my face – that I am a dribbling, drooling idiot.

“We are just normal people. People with dementia should carry a help card. It doesn’t matter if I’m putting fuel in my car or buying a television I will put down my help card, and ask the person behind the counter to read it, so that if I’m having problems sorting my money, they can help.”

Wasted money

The final part of the national strategy is aimed at improving the quality of care for sufferers. Chidgey says: “A lot of money is spent on dementia in this country, but a lot of money is wasted on really bad quality care. But if we are going to improve then there will need to be investment.

“We know at the moment there are lots of care providers giving good care, even in hard financial circumstances. We hope the green paper from the government later this year will really start to tackle this question.”

But Roberts has her doubts the strategy can be implemented effectively. “It sounds very good on paper, but will it make a difference on the ground level? I doubt it.”

For Wilson’s part, he is now starting to visit care homes to offer opinion from someone with dementia about the quality of care. He says the difference between good and bad homes is enormous, but the bad can be improved by listening to sufferers. “People with dementia are the professionals, we are the people with the answers,” Wilson says. “They can learn from what we tell them.

“Alzheimer’s is a beast. We can’t beat it at the moment, but we can give it a bloody good kick on the way out.”

• Alzheimer’s Society,: www.alzheimers.org.uk

• National Dementia Strategy, see www.tinyurl.com/3wgfn7

• See p34 for research into dementia in care homes