THE PRICE OF DEMENTIA

Alasdair Palmer on how the families of

victims of Alzheimer's disease are made to suffer by the state

'I DON'T cry. I've lived through some ter- rible things — my husband and I were in Biafra when the war broke out, and in Lebanon through the bombs. But after that phone call I cried and cried. I couldn't stop myself. It was so humiliating and degrad- ing.'

Emma Sturdy-Morton gasps at the mem- ory. The phone call which reduced this proud, independent woman to tears was a routine conversation with Sussex County Council. The insistent voice at the other end of the line had just itemised the earnings and assets of Mrs Sturdy-Morton's household and informed her that all of them — her savings, her husband's occupational pension — would be confiscated and used to pay for her husband's medical care. 'What am I going to live on?' she asked. The voice suggested she try income support. It currently runs to £55 a week. 'But I can't live on £55 a week!' The voice curtly informed Mrs Sturdy-Morton of the fact that other people do. The phone was then put down on Mrs Sturdy-Morton.

But four years ago her husband started to become forgetful. Two years later he was diagnosed as having Alzheimer's disease. His condition has deteriorated rapidly since then. He now needs 24-hour care. His wife had been advised by her doctor that she should not continue to care for him alone. The view of doctors is that he needs specialist nursing care in a residential home. But that will cost around £400 a week. The phone call from the council put Mrs Sturdy-Morton in the picture as to where the money would come from: his pension and their savings. It would eat up both in a matter of months. And then Emma Sturdy-Morton would have to endure the rest of her husband's life on income support.

She feels betrayed. 'We worked hard all our lives. We worked for the Government! I gave as much of my life as he did. We weren't feckless or imprudent. We thought about our future, and he paid into a pen- sion scheme for years specifically to protect it. And what is the reward? I am going to be impoverished.' Mrs Sturdy-Morton's nightmare is shared by hundreds if not thousands of women across the country. There are half a million people with some form of dementia. Most of them will reach the stage when a doctor orders 24-hour nursing care. Usually the catalyst will be a fall or a particularly uncontrollable outburst — something which is enough to get the sufferer hospi- talised. The National Health Service will see the victim of Alzheimer's through a week or so in hospital, but then the pressure will be on to push the patient out and free that bed. The fact that the individual may need continued medical care is irrelevant. It is appar- ently not something which the Gov- ernment wishes the NHS to provide for old people — at least not when they suffer from dementia-related dis- eases. Doctors and psychiatrists can order the only treatment there is for the illness, which essentially consists in specialist nursing care. But the NHS will not pay for it. 'That is what seems so unfair to me,' says Mrs Sturdy-Morton. 'The whole point of the NHS is to provide free medical care for everyone. Goodness, enough governments have proclaimed that over the past 40 years! Of course we assumed it would be there when we needed it. That's what we paid our taxes for. Now we do, we're told that was a mistake, we shouldn't have expected anything, and we must pay. I suppose it would be funny if the Cone sequences weren't quite so awful.' It is predominantly older women on whom the burden falls, for the simple rea- son that in most cases their only income is the occupational pension to which their husbands have spent their working lives contributing. If a woman's husband falls victim to dementia, all of that pension will be sequestered to pay for his treatment. With nursing homes costing as much as £2,000 a month, most pensions will be gob- bled up immediately. The next target is say' ings. Anything above £8,000 can be taken- Mrs Sturdy-Morton does not understanu it. 'Of course, if I was already impoverished

the Government would pay. We scrimped and saved all our lives to have enough for our retirement. Now I wonder why we bothered. I'm being penalised for our pru- dence. The Government will make me des- titute before they'll help me.'

The Alzheimer's Disease Society regards that situation as disgraceful. Every week the society receives calls from frightened, fragile women like Mrs Sturdy-Morton. There are, on average, 42 new cases of dementia every day.

Alzheimer's is fast becoming Britain's most devastating disease. But the Govern- ment continues to treat Alzheimer's and other kinds of dementia as if they were not really diseases at all. The method behind that particular madness is clear: it stops the cost of treatment from being a health ser- vice issue. In a perfect piece of bureaucrat- ic obfuscation, a spokesman from the Department of Health told me that ques- tions relating to the cost of such care were the responsibility of the Department of Social Security; whilst a spokesman from the Department of Social Security said that it was not a Social Security issue, and referred me back to the Department of Health. The Department of Health spokesman then said it was really a matter for local authority social services depart- ments. A social services spokesman said the policy issue could be dealt with by either the Department of Social Security or the Department of Health — but not by her.

The confusion about whose responsibility It is to answer questions accurately reflects the Government's inflexible determination to dodge the issue. The new Community Care legislation, which came into force on 1 April, made local authorities responsible for assessing what sort of care was appro- priate. The Act tinkered with the Byzantine regulations governing exactly how an indi- vidual's ability to pay for care could be arranged. It did not make those regulations any simpler or easier to understand — there are over 150 different provisions, all of them models of tangled, impenetrable Prose. And it did not change the principle that occupational pensions, together with savings above £8,000, would be liable to Pay for the cost of full-time nursing care When it was deemed necessary.

The Government is evidently not partic- ularly proud of its determination to make old people pay. No minister has ever boast- ed about it. As it amounts to ending free medical care for all, that is not surprising. Tampering with the principle of free care is not popular — witness the howls of anger Which greeted Michael Portillo's suggestion that public expenditure was now so out of control that the NHS might have to consid- er charging patients for certain medical treatments, including pensioners for their Prescriptions.

But the truth is that the Government has been making old people pay for their medi- cal treatment for years. The immediate ancestor of the present law was a bill passed in 1984 when Norman Fowler — now chairman of the Conserva- tive Party — was running the DHSS. It extended the amounts and kinds of proper- ty which were liable to be taken to pay for nursing care to include all of an occupa- tional pension, and all savings over £8,000. It had enormous implications. The Govern- ment was in the middle of a programme — now completed — to close down long-stay mental hospitals. Those hospitals, run and funded by the NHS, had been the places where people with severe forms of demen- tia were treated. Now they have been closed or drastically reduced in size, the only place for people with Alzheimer's and related diseases is in residential care homes. Those homes are either private or run by local councils. In either case the patient has to pay for the privilege of being treated.

The Government has done absolutely nothing to tell the British people about this. On the contrary, it has encouraged the expectation that the diseases of old age will be looked after in the same way as diseases of younger, more vigorous phases of life. What else could be the effect of all those speeches from the dispatch box to the effect that 'the NHS is safe in our hands', and that the principle of free universal health care will never be compromised by a Conservative government? It would be an embarrassing moment — particularly for Virginia Bottomley, the caring Health Sec- retary — to have to admit that compromis- ing that principle is exactly what her caring Conservative Government has done.

There has been no campaign to warn the old of what lies in store for them. Of the hundreds of millions of pounds of public money spent annually on advertising by the Government — think of all those privatisa- tion 'Tell Sid' campaigns — not one penny has been devoted to alerting people to the fact that if they have savings or an occupa- tional pension, both will automatically be taken if nursing home care is required; £400 million has been released to alert the young, promiscuous and homosexual to the dangers of Aids, but when it comes to warning the old of the consequences the Government's own legislation might have for their care and prosperity, there is no money to communicate the message.

The result is that most women find out about the law as Emma Sturdy-Morton did: through a phone call from a council offi- cial, when they are still reeling from the shock of learning that their husbands will need to be permanently institutionalised. 'It is just so cruel. You already have one terrible misfortune: the loss of the person closest to you. Then they tell you of another: the loss of what property you have.'

The latest legislation empowers council officials — it is usually social workers who are assigned the job — to scrutinise and assess the assets and income available. It also hands them the power to terrify and tyrannise vulnerable women. Joan Ander- son lives in Hampshire. Her husband worked as an agricultural engineer until his retirement. Two weeks ago he was admit- ted to a psychiatric hospital for treatment for Alzheimer's. The hospital now wants him transferred to a nursing home. Mrs Anderson received the call. 'They told me that it was going to cost £300 a week to care for him, and that I would be liable to pay. Once they had gone through our sav- ings, they would come after half of the house. They told me I should put the house on the market. I am desperate. I've lived here for 29 years. I don't want to move. I don't know where I would go.

Mrs Anderson begged to be allowed to keep her husband at home. The council officially informed her she could not. 'He's medically required to have institutional care,' the official told her. 'If you will not put him there, we will. We shall appoint a solicitor to represent his interests, and we will get a court order. After that, he will be placed in a home, and you will be liable for the costs.'

Mrs Anderson, a thin, small, demure woman in her fifties, was quaking with fear when I met her in her home. 'I can't cope with it, I daren't think about it. I just think what's for tea. But I hardly dare buy any- thing now.'

It appears that the official may well have misinterpreted the law. Mrs Anderson's home is probably not at risk of imminent confiscation. Nor should her husband be compulsorily confined to a nursing home without her consent. But the legislation is ambiguous, and could be read as the offi- cial claimed. There is no test case. The effect is to ensure that Mrs Anderson remains in a state of terror — a state which council officials do not seem reluctant to exploit.

'One of them came round and looked at the house. "You've obviously been used to a high standard of living," the official said.' The clear implication was that those days were over, and Mrs Anderson had better get used to it. The official appeared to Mrs Anderson to view that prospect with con- siderable relish. Mrs Anderson explained that she had very little money — only some savings that she and her husband had put together. 'You could always take some stu- dents,' was the official's response. Mrs Anderson lives in a very modest house, 15 miles from the nearest town. 'The woman from the council just asked me how many bedrooms I had. When I told her the house had three, she said, "You don't need three! Sell up and find somewhere smaller."' Like many others, Mrs Anderson now has to confront the fact that the longer her husband lives, the worse off she will be. 'If he'd known this was going to happen — if he could understand now what is happen- ing — he'd have shot himself.'

The Alzheimer's Disease Society is not in fact against people making some contribu- tion to their care. 'It's just that the present level at which people are forced to con- tribute is grotesque,' says Harry Cayton, the society's executive director. `No one could call people with £8,000 worth of sav- ings well off. Yet anyone with that sum or more has to pay the whole cost of medical- ly essential specialist nursing care. It wouldn't be difficult to change that. The Government has just raised to £140,000 the amount you can inherit without paying tax. Why not set £140,000 worth of savings as the threshold for paying for a place in a nursing home?'

There is a simple answer: because it would cost too much money. The same goes for scrapping' the provision which makes all of a married man's occupational pension liable to confiscation. That regula- tion is particularly hard to justify on any but the crudest cost-cutting grounds. In almost every other case, a wife's right to half her husband's occupational pension is accepted as right and just. When he dies — even when he dies of Alzheimer's disease after years in a nursing home — she will be paid half of his pension. But so long as he lives, suffers from dementia and needs institutional care, the state will take all of it. She will get nothing — except, maybe, income support.

Given the Government's overriding need to cut public expenditure, there seems little chance that any changes which would reduce the burden on dependent spouses will be made. But it would be helpful to have a minister confirm that fact, and stand up and defend the policy in the House of Commons.

Meanwhile, every married woman with a husband over 60 should be aware that she could find herself sharing Emma Sturdy- Morton's and Joan Anderson's fate. Don't think it could not happen to you. Unless you are rich or already on income support, it could. And, if it does, everything you have will be assessed, and most of it will be eligible for confiscation. The only thing you can do to protect your money now is give it away to your children, and to hope that they will be less flint-hearted than the Gov- ernment.

The Alzheimer's Disease Society, 10 Green- coat Place, London SW1P 1PH; tel. 071-306 0606.