Losing our minds

Walter Devine, Wal as he is known, lives in a council house in Hackney, east London. He is a lively, talkative octogenarian who likes a joke. But the cheery exterior crumbles and he cries when he talks about Marie, his wife of 44 years who suffered from dementia and died last year.

Colin McFadyean, my 90-year-old father, lives in a spacious house on the other side of London in St John's Wood. Despite their differences - Wal drove a bus, Colin was a City lawyer - these two have a lot in common. They fought the war, worked hard, raised families, paid taxes, abided by the law and in their 80s watched helplessly as their wives drifted into dementia. But Colin could afford to pay carers so his wife Mary could stay at home. Wal couldn't.

For the past couple of years, Mary, my stepmother, has sat by the window gazing into the garden. She loves to talk. Conversations are seemingly coherent and go something like this: "I rather thought I'd see if it's there," she might say, making a circular motion with her hand. "What?" "Mmm!" she'll reply. "If what's where?" you say. She will look perplexed, scowl or smile, and reply: "I don't know." She and Colin celebrated their 45th wedding anniversary last year. Mary was in hospital at the time and Colin took her champagne. She enjoyed it but forgot about it almost before she'd swallowed it. As Mary's dementia advanced, her care costs ballooned to £50,000 a year. My stepsister and I, like thousands of our generation, discovered that trying to find paid care for ageing relatives drags you into a nightmarish, bureaucratic maze.

Seventy thousand elderly people a year sell their homes to pay for their care. Anyone with more than £20,500 worth of assets must sell them to fund the "personal care" that keeps them alive - unless they qualify for "continuing care", in which case the NHS foots the bill. It was by chance, stumbling about in the bureaucracy, that I discovered Mary might qualify for "continuing care" - full NHS funding - and even that such care might be in her own home.

Before Marie died Wal said, "I'd love to win the lottery and buy a bungalow with four rooms and enough money to hire three people to look after Marie." Wal didn't know there was the remotest chance of funding to have Marie home - nobody told him.

For the first few years of Mary's dementia Colin refused help. He took her travelling - as far as Easter Island in the south Pacific. Asked what it was like, she replied, "Easter Island?" as if you'd mentioned the rings of Saturn. Sometimes she'd tell us to "piss off" in the cut-glass voice for which she was famous as a TV announcer in the early days of the BBC. We watched old footage of her recently, mesmerised by her glamour and poise (which in later life briefly disguised the dementia). She had no idea who that beautiful woman on the TV was.

Care of the elderly - and those with dementia is no exception - is largely undertaken by relatives like Walter and Colin, many of them frail themselves. There are 6 million carers, 1 million of whom provide 50 hours a week or more care. A handful - those aged under 64 providing more than 35 hours a week - are eligible for pocket money. Many are poor, isolated and exhausted. As one residential careworker in the Midlands, who asked to remain anonymous, told me, "The only way someone with dementia gets one-to-one care is if they are at home, and looking after someone with dementia 24 hours a day is a killer. I know many cases in which the care caused the deaths of the partners."

Walter and Marie were on holiday in Portugal five years ago. One morning he woke to find her out cold. Nothing showed up on x-rays. They came home. Then she had a stroke and was hospitalised. "She wouldn't stop in bed, she went berserk and took her clothes off," Walter remembers. She got better and was sent home but after another fit was readmitted. Once again she was discharged, but the fits continued. "I had a hell of a job getting any help," says Wal. "I phoned numbers in the Yellow Pages to get help." Eventually, two women came round from a charity he had contacted. "They said they'd help me again but I never heard a dicky bird." Then agency nurses were supposed to come but didn't. He couldn't leave Marie: "If you didn't watch her she'd turn all the gas rings on." It got to the point that Wal was so worn out he could barely function. He was desperate and their GP arranged for Marie to go to a dementia unit where Wal visited her, faithful to the end. She died a few months later.

Dementia could happen to anyone. Currently there are 750,000 sufferers, a figure which, according to the Alzheimer's Society, is likely to reach 1.8 million by 2050. Rare in people under 65, dementia afflicts 1 in 50 after the age of 65, rising to one in five after 80. If you have a life-threatening physical illness such as cancer or heart disease, the NHS pays. But if you have dementia, although it too is a terminal illness, every penny is haggled over.

"The feeling is," says Professor David Jolley, psychiatrist in old age and professor at Wolverhampton University, "that we shouldn't be spending money on the demented, they're better off dead."

Nobody could have predicted that a royal commission on funding for long-term care would become a political hot potato. The report, With Respect To Old Age: Long Term Care - Rights And Responsibilities, published in 1998, endorsed the ideology of the welfare state: "The most efficient way of pooling risk, giving the best value ... is through services underwritten by general taxation based on need rather than wealth. This will ensure that the care needs of those who ... suffer from Alzheimer's Disease are recognised and met by the government as much as those who suffer from cancer." Were the report implemented, it would demonstrate that the government "values its older citizens and is prepared to give them freedom from fear and a new security in old age". But by that time, New Labour's shift away from the values of the welfare state was in full swing.

Lord Stewart Sutherland, who chaired the commission, found himself sitting beside Sir Andrew Turnbull, then permanent secretary to the Treasury, at a meeting of university vice-chancellors in autumn 1999, before the government officially responded to the report. Lord Sutherland recalls: "In passing, Turnbull said recommendations on university salaries had been put in the bin as quickly as the royal commission On Care For The Elderly. I have no doubt that he knew I was chair of the commission and that he was waving two Treasury fingers in my face. I wrote to him immediately asking him if this was the official position or his personal view. He replied apologising and saying it was his personal view. He could admit to little else at that stage for the official line, announced shortly thereafter, was that 'all options were still on the table'. It took the government a further seven months to get around to confirming Sir Andrew's view."

When I put this to Sir Andrew, he replied: "A more diplomatic way to have expressed my view would have been to say that I thought the minority report, by Lipsey and Joffe, had the better of the argument. Indeed, the government in England did not accept the full recommendations of the majority."

Dissenting commissioners Joel Joffe and David Lipsey published an addendum in which they said old age was a time of "rights and responsibilities" and that universal benefits "weaken the incentive for people to provide for themselves privately". The state should only pay for the very poorest. While the state should help with "nursing care", individuals should be means tested for "personal care". In practice, residents of nursing homes - where fees can be £600 a week and more - can only claim £40-£129 a week for nursing, or in some cases nothing.

The royal commission pointed out that to pay for those receiving "personal" care, including people with dementia, would only add a halfpenny to the pound in taxes. It goes against our self-interest to deny this small hike. We all grow old. "There is no demographic time bomb," the report concluded, "the costs of care will be affordable."

Not everyone is so sanguine about the "time bomb" - the growing number of older people. A UN conference in Madrid in 2002 debated whether the greatest threat to developed countries was not carbon dioxide emissions but their ageing populations. And Tony Blair disagreed that care was affordable. He told the Commons in February 2001: "We have chosen not to introduce free personal care because it would cost about £1bn, and we believe that that money would be better spent elsewhere."

Many of the nation's dementia sufferers, even the poorest, contribute to their care as pensions and benefits are absorbed. Very few get "continuing care". "Most people don't even know continuing care exists," says Julia Cream, head of public affairs at the Alzheimer's Society. "It's criminal how many people fall through the net and are not even informed that funding is available. Even when they do know, they are forced to jump through hoops and hit the brick walls of eligibility criteria." These criteria are set by individual health authorities and can vary.

A good residential care home is the right place for many elderly people, but Colin wanted Mary to stay home. It transpired that Mary was eligible for continuing care, funded by the NHS, because she met local Primary Care Trust criteria: she is unable to communicate, is incontinent, catheterised, unable to feed, wash or dress herself, cannot walk without two people assisting her, and cannot be left alone.

In Mary's case the NHS is the "provider" and the social services "the purchaser". The Trust told us it would pay for her to go into a care home. We asked if we could have the money and pay carers at home and, to our surprise, were told this was "feasible". Had we not pressed, we would never have found this and our parents would have been separated.

The health service ombudsman for England, investigating four cases where free care was denied, concluded in a 2003 report that the lack of a fair and transparent system for assessing eligibility for funding long-term care caused "injustice and hardship" to patients and their families. After publication the ombudsman's office was inundated with 4,000 more complaints and inquiries.

Meanwhile, cruel anomalies in the way we look after our elders continue, in England and Wales, at least - Scotland adopted the royal commission's recommendations. Even when someone with dementia qualifies for NHS continuing care, annual reassessment can change that. Prof Jolley quotes the case of an elderly woman whose continuing care package was threatened. "She was near death, very disabled and impaired ... the NHS said she's not wandering about upsetting everybody any more and so doesn't need so much supervision." It was decided her case no longer justified the spending. "It's an awful situation and dehumanising for the officials. The workhouse was gentler. Care should be determined by need, not finance."

Besides the problem of funding, the quality of care is an issue. In 2003 the Commission for Health Improvement (CHI) found allegations of physical and emotional abuse at Rowan Ward, an elderly mental health unit run by Manchester Mental Health and Social Care trust. Poor management was blamed. This is not an isolated case. The charity Action On Elder Abuse (AEA) has a helpline which has had 10,000 calls since its inception in 1996. "There are many incidents," says AEA's Katerina Clark, "of people with dementia not being properly treated. One that comes to mind is a man who went away for six days leaving his wife in respite care. When he got back, she was sitting in soaking trousers and was in a very bad way. She had been neglected because a nurse couldn't spell Alzheimer's so left it off the care plan notes. She died four days later."

Child abuse makes national headlines, elder abuse - some of which occurs in families - doesn't. The Royal College of Psychiatrists reported in 2000 "abuse is a common part of institutional life". Despite the horror stories, Prof Jolley notes improvements in the past 30 years - innovations in sheltered housing and smaller dementia units - but adds, "The elderly demented ought to be safe - often in nursing and residential care they are not. Staffing levels are not sufficient and that's economics - how much money is available to employ staff? Homes close because they are not economically viable. They are constrained because of rationing of funds by local authorities which, in turn, are constrained by how much is available from the government."

Sonia Richardson, head of Mental Health In Later Life at the Mental Health Foundation (MHF) says, "The majority of people in residential care with dementia are not in designated dementia care beds. A lot of care homes don't want to take people with dementia. But because there's pressure to get people out of acute hospital beds and into residential care, people are being presented as more able than they are to care home managers and having lower levels of need than they do . . . things are cobbled together to make a creaking system work."

Well-paid, trained carers provide better care. "It costs much more to do it properly," says Prof Jolley. "There are homes in every town that are unacceptable, people looked after by staff who are severely overstretched, and know little or nothing about the individuals in their care. It's not that staff or owners want to neglect or abuse but they aren't able to give the quality of care and understanding human beings should be giving each other."

The Alzheimer's Society estimates that 75% of people in care homes have some form of dementia, but only 10% of carers are dementia-trained. The careworker in a Midlands council home who spoke to me explains how it works: "In my unit almost all the residents have dementia. It's a dumping ground for difficult clients. I've been here for 10 years. I am in charge of eight to 10 people on a shift. Our pay is better than in a private home - £5.70 an hour rather than about £4.50. Our clients are very demanding and they need one-to-one care, which isn't feasible because of cost. Even in units specialising in dementia care, the ratio is one to five. We're really worried, we're not doing the whole job, we can keep them clean and safe and on a reasonable day can talk to them but that's not enough. You have to get to know the residents and love them even when they crack you round the head." He adds, "People in their 80s and 90s ask to be taken home to their mum and dad where all their problems would be taken care of - how to supply that to someone beyond reason?"

Most council care homes have been sold to private entrepreneurs or to "not for profit" associations whose complex borrowing requirements mean they cost more to run. Thirty years ago most care beds for the elderly were in local authority hands; by 1998 only 22% were. What was once an essential element of the welfare state has become an industry encompassing £7bn a year. But caring for vulnerable elderly people didn't prove as profitable as anticipated and, by 2001, 1,400 private care homes had closed down.

Moving from one home to another is hugely stressful for the elderly and demented and can result in premature death. Enforced inactivity and isolation are damaging, too. As Mary became more settled she became calmer and happier. One day we asked how she was in French, expecting her to stare at us blankly. "J'ai tout oublié," she said airily, adding that we were all "quite dotty". There's always someone to chat to Mary or hold her hand, to read to her and walk her to the door to look at the world beyond her window. There is constant, comforting communication.

Professor Clive Ballard, director of research at the Alzheimer's Society, found through his research into care homes that "restlessness and aggression are much better if you have a stimulating environment and plenty of activities". But in his research he established that people with dementia in care homes spent most of the time doing nothing. "People with Alzheimer's need frequent interaction. Overall, the care [in our research], which covered council and private homes, was very poor." Many studies, says Prof Ballard, have shown that around half of all those with dementia are on heavy duty drugs. "The answer," he maintains, "is to manage the dementia symptoms better rather than just giving people drugs. It comes back to staffing levels and training."

There are more than 100 types of dementia. The most common are Alzheimer's and vascular dementia. The earlier dementia is diagnosed the better the long-term prospects but many GPs are not as alert in spotting the symptoms as they should be.

Rachel Canning was diagnosed with vascular dementia four years ago. Frightening as it was, the early diagnosis meant she could plan her future. A warm, bustling woman, she lives in a bright bungalow in Par, in Cornwall. As she butters scones, chatting, there is no sign of dementia. But on bad days she locks the doors, shuts the curtains and goes to ground. "It's like a massive depression. I think nobody loves me. My family come round; they open the curtains and try to relieve me. I get cross, they try to laugh me out of it but I don't feel like laughing. Sometimes I can pull myself out of it, others I can't, no medicine works. I spend my bad days slobbing around in my dressing gown." Sometimes she can barely walk and once fell, fracturing both arms, her nose and cutting her lip.

At times she doesn't recognise people. "I act sensible," she says chuckling, "I guess who they are by the conversation, and try to make them say their name. I don't always get it right, but they don't know. I have techniques." Rachel works with the Alzheimer's Society, giving talks and encouraging others to adopt her ebullient approach. "Use it or lose it," she says. "I read newspapers, watch the news, and use photographs to stimulate my memory." She has a support network of relatives, friends and local nursing home staff and when the dementia gets worse will go into the home. As a Jehovah's Witness her faith sustains her: "God is going to step in and get rid of wickedness and bring back paradise."

Paradise is a tall order in care for the elderly, but there are oases of good practice. One is in a corner of one of western Europe's most deprived boroughs - Hackney in east London, where Walter's Marie spent her last months. The gruesome locked wards of the old hospital are replaced by a purpose-built unit, The Lodge, with looping corridors so residents can walk endlessly but safely, as people with dementia like to. Everyone has their own room and the staff to patient ratio is high. There are gardens, a music and dance therapist and staff sit with residents holding their hands - even in the latest stages of dementia people respond to touch. There are always qualified people on duty and training is encouraged. "We still need to develop the amount of therapy and recreational activities," says manager Alan Clark. "Six years ago there was nothing. Across the country there's a severe lack of investment with only basic care needs being met. Units like ours are some of the most difficult areas to work in and the most undervalued."

The Lodge shows that living in a residential setting has its benefits. Wendy Knight's father, Patrick, a resident of the Lodge, had made her mother's life hell. After the divorce 28 years ago, none of the family spoke to him. "We were scared of him as children, he was a verbally aggressive drunk. I would pass him in the street," says Wendy, "he was angry with me, blamed me for my mum leaving him. Fifteen years ago he came to see me and he swore at me."

Wendy, a teacher and community worker, was living in Spain when she heard Patrick was going out naked and drunk in the street. She hadn't seen him since he swore at her but he had asked for her and she returned to look after him. She has written a record of his life story drawn from his memories. "I understand him better after hearing stories of the Dublin tenement where he grew up. He was out drinking with his dad when he was 12. What chance did he have? I grew up hating him but now I've sort of got a dad that I never had who is pleased to see me. He thinks I'm wonderful and he makes me laugh. I go twice a week and he forgets it but he enjoys the moment. A lot of his friends keeled over on bar stools and died. I think he's got a result considering his life. Two of his three children visit him and he is in a place full of women being nice to him."

Dr Jerry O'Mahoney, the consultant in charge of the Lodge, loves his job and offers a different challenge to our prejudices: "Some of our best results are good deaths," he says. If we were honest and the Treasury did its duty to the elderly rather than throw their chances of happiness in the bin, that would be something to aim for - good deaths.

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