Big Brother or quality care?

STUART Watts' mother, Freda, began showing the first signs of Alzheimer's Disease about ten years ago.

She was living in a terrace in the Haxby Road area of York. Stuart, a 43-year-old pensions operations manager from Copmanthorpe, remembers being shocked by a conversation he had when he visited her one day.

"She said: You won't believe it. I went down the street, and I went to another house exactly the same as this one! There was a cake on the table. Nobody was there, so I ate some of it and had a cup of tea'."

She was clearly confused, Stuart remembers.

He asked if she was sure it hadn't been her own house that she had been into, but she insisted it wasn't.

Thinking back on it, Stuart thinks this probably wasn't the first sign of her illness.

There had been moments of forgetfulness earlier. "At the time, you think it's nothing. Now, when I look back, I can see."

His mother had always been very independent. Stuart and his sister, Christine, wanted her to be able to continue living in her own home as long as she could.

But gradually, her condition got worse and worse.

She was still able to cook and look after herself, but one night she went out wandering in her nightgown. She was found by the police, but couldn't remember where she lived.

"Luckily, she was able to remember my sister's phone number," Stuart says.

Christine began to look after her during the week, and Stuart would take her at the weekends to give his sister a break.

But she became more and more distressed and confused.

She was constantly getting up and walking around, saying: Oh dear! oh dear!', Stuart recalls.

It was very hard to keep track of her.

Eventually, he and his sister bowed to the inevitable and decided she would have to go into a home, where he could get proper full-time care.

The change confused her. "She'd get up saying: I must go to work', and there would be times when she would go back to her childhood," Stuart says.

"But there were other times when she would recollect what was happening in the present."

That was several years ago. Today, his mother is still in a home - a different one - in Strensall, York. But her condition has deteriorated greatly.

"She is bedridden, she doesn't recognise anybody that visits her, and she isn't able to communicate," Stuart says.

Freda's story is fairly typical of the more than 350,000 in the UK who have Alzheimer's Disease.

It is a condition that puts a terrible strain on relatives, who watch a loved one gradually deteriorating and effectively becoming lost to them.

So what does Stuart, as a loving son, think of Science Minister Malcolm Wicks' suggestion that elderly people with dementia could be tagged?

The idea would be for them to be able to remain relatively free and independent, at least in the early stages of dementia, while at the same time allowing relatives and the authorities to keep tabs on them if they wandered off and got lost.

The suggestion - put forward for discussion only - has divided opinion.

Some have claimed it amounts to treating elderly people as little more than criminals whose movements need to be constantly monitored.

Others say it might be worth considering in some cases - but it certainly should not be a substitute for proper care.

Stuart thinks for a moment. He can see some point in the idea, he says, especially in the earlier stages of the disease.

If it helped people to remain in their own homes longer, that would be a good thing.

But he can also see problems. How would the system work? Who would monitor it? How would it be paid for? What if a dementia sufferer was continually getting up at night and wandering around? Would the system really help then?

He wouldn't dismiss the idea, he said. He could see there might be some cases in which it would help.

But he suspects there night be other ways in which money could be better spent.

"I can't help wondering whether people would be better supported in terms of more care workers and meals on wheels," he said.

Allowing wider use of drugs like Aricept in the early stages of the disease to slow its progression might also be a better use of money, Stuart said. "Prevention is always better than cure."

Better financial support for sufferers would also help.

His mother's savings were being used to pay the £548-a-week cost of keeping her in a care home.

"I think it is criminal that people like my mother have to fund care themselves," he said.

What the Science Minister said...

Science Minister Malcolm Wicks said tags similar to those used to monitor criminals could be used to help families keep tabs on frail or elderly relatives.

They could help give more freedom to those suffering from dementia and Alzheimer's disease, he said.

With an increasingly frail and elderly population, many families were worried about vulnerable relatives, he argued.

The idea of using satellite monitoring to benefit society should at least be discussed.

He said: "We've got an ageing population with many people frail and many suffering from dementia, including Alzheimer's.

"How can we get the balance right so that these people have the freedom to live their lives, to go out in the community and go shopping?"

The proposals received a mixed reaction.

Kate Jopling, of Help The Aged, said at first glance the proposal smacked of Big Brother. But she said the potential of new technology to help vulnerable older people should not be dismissed.

Tagging might enable people with dementia to live more independently while minimising some of the risks, she said.

"The key issue would of course be the involvement and consent of the individual, and their family and carers, to ensure the technology means better care - not just care that's cheaper or more convenient."

Shami Chakrabarti, director of Liberty, warned of "gimmicks" which are designed to replace expensive care.

She said: "A debate about better care for the elderly is a good thing, but technical gimmicks often provide cheap and quick fixes rather than dignified and possibly expensive care."

What the experts say

Gill Myers, manager of the York branch of the Alzheimer's Society, said she welcomed any debate about new ways of helping people with the disease.

There was a balance to be struck between freedom in the earlier stages of dementia, and people's safety, she said. "But there is always a tipping point where people are suddenly out and about, and suddenly think: Where am I? how do I get home?'"

Electronic tagging may well be able to help some people with dementia achieve greater independence and dignity, and reduce the concern and worry of relatives and carers. But it was not a quick fix, she said.

In the early stages of dementia, it might be cheaper and simpler to use more low-tech methods to enable sufferers to get home - identity bracelets, for example, or the new helpcards recently launched by the Alzheimer's Society. Carried inside a purse or wallet, these contain contact details of a relative, friend or carer.

There was also an ethical issue, Gill said. It would be important to get the consent of the person being tagged.

Perhaps most importantly, electronic tagging should never be used as a substitute for proper care and support, she stressed.

James Player, deputy chief officer of Age Concern York, agreed. Any proposals to introduce electronic tagging would have to be looked at "very very closely", he said.

Technology did have its uses. "But it must never be used just as a means to save money."

The real issue, he said, was the appalling rates of pay that care workers received.

People were paid more to stack supermarket shelves than to look after frail, vulnerable elderly people, he said. "That's a disgrace. As a society, we're not valuing older people or the people looking after them."

The result of the low pay given to care workers was there was a very high turnover of care staff - a fact that was in itself distressing and confusing to vulnerable older people.

* The York branch of the Alzheimer's Society can be phoned on 01904 658106.

Dementia: The facts, figures and symptoms

* One in three older people will end their lives with a form of dementia.

* 700,000 people in the UK have a form of dementia, more than half of whom have Alzheimer's disease. In less than 20 years, nearly a million people will be living with dementia. This will soar to 1.7 million people by 2051. One in five people over 80 have dementia.

* The term "dementia" is used to describe the symptoms that occur when the brain is affected by a range of specific diseases and conditions. These include Alzheimer's disease and stroke.

Symptoms include:

:: Loss of memory - for example, forgetting the way home from the shops, or forgetting names and places.

:: Mood changes - parts of the brain that control emotion are affected by disease. People with dementia may also feel sad, frightened or angry about what is happening.

:: Communication problems - a decline in the ability to talk, read and write. In the later stages of dementia, the person affected will have problems carrying out everyday tasks. The symptoms gradually get worse. How fast dementia progresses depends on the individual.

* There are several diseases and conditions that cause dementia. Alzheimer's disease, in which the chemistry and structure of the brain changes, leading to the death of brain cells, is the most common.