Dementia — Debate

Part of the debate – in the House of Lords at 12:02 pm on 25th June 2009.

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Photo of Baroness Perry of Southwark Baroness Perry of Southwark Conservative 12:02 pm, 25th June 2009

My Lords, I, too, thank the noble Baroness, Lady Murphy, for introducing this timely debate in such a brilliant and comprehensive way. Dementia is a national crisis and too little is being done to address an urgent need. I should declare my interest as a patron of the Alzheimer's Research Trust and as the recently widowed wife of an Alzheimer's sufferer.

I welcome the publication of a national dementia strategy; £150 million over the next few years, however it is spent, will certainly help. Nevertheless, as other noble Baronesses have said, it is woefully inadequate in the face of the problem facing us as a nation. Better training for GPs and a dementia specialist in every general hospital are welcome reforms which should have existed long ago. However, the fine words promising patients more involvement and control in their treatment and the additional help for carers do little to resonate with the reality of dementia for the thousands of sufferers and their families today.

The problem is indeed urgent, as the noble Baroness has said. More than 700,000 people suffer from this terrible affliction, involving untold distress and hardship for them and their families. But matters can only get worse. We have over the past century greatly increased life expectancy, but for more and more of us, our bodies will, in all meaningful ways, outlive our minds. It is estimated that by 2025, 1 million people will suffer from dementia.

I should like to reflect for a moment on the reality of the disease that we are debating. Dementia affects memory, orientation, thinking capacity, comprehension, calculation, learning, judgment and language. It is a progressive disorder for which there is, as yet, no cure. For many sufferers, it brings with it loss of emotional control, in social behaviour and in the ability to make even the most simple decisions. Although it can occur in early life it is strongly age-related; the number of cases roughly doubles for every five years past the age of 60. The personal grief which lies behind the statistics is incalculable.

The cost to the country is beyond imagination. Currently, as others have said, the cost is £17 billion per year, eased only by the massive contribution made by the partners, children and family members who act as unpaid carers.

I make an urgent plea to the Government, of any political persuasion, to make it a priority to address particularly three major issues: research; information and support for carers; and an improvement in the quality of residential care. First and most urgently, there must be investment in research. The Government still have no real research strategy for dementia, although there are many developments, in both genetic and stem cell research particularly, which promise a real breakthrough in preventing, curing or delaying the onset of this disease. The facts are stark—as many people suffer from dementia as from cancer, yet the Government are spending eight times as much on cancer research as on dementia. In 2007-08 the total government spend was £248.5 million on cancer, and only £32.2 million on dementia. The US Government wisely spend 13 times more than the UK on this research, and within Europe, our government spend is behind that of either Germany or France.

I believe that research should have been a major plank of the national dementia strategy. At present we must be thankful for the two charities, which, as the noble Baroness, Lady Murphy, said, support research to the tune of a further £6 million a year—£4.5 million from the Alzheimer's Research Trust and £1.5 million from the Alzheimer's Society. The national strategy does make proposals for increasing GP training and awareness, and that could lead to earlier diagnosis. However, without a breakthrough in research that delays the progress of the disease—or best of all, finds a cure—this will only marginally improve the lives of individuals or ease the lives of carers.

My second plea to Government is for better information and support for carers. Reluctantly here, I must tell my own painful story as an example. I do not know if it would have made any difference to my darling husband if we had known earlier what ailed him, but at least we could have discussed things with him while he was still able to take decisions about what he wanted, and made provision for the fate that was to overtake him. As it was, the diagnosis came late, and his descent into darkness was swift. A happy, loving and highly intelligent man, a former Oxford don with advanced degrees from both Oxford and Harvard, he soon lost the power to finish a sentence, to recognise his own home, his friends, and finally even to dress or feed himself.

Experts tell us that people with high intelligence and education are often not diagnosed until the disease is in an advanced stage—because they live at a level of mental performance above the average, they are able to function apparently adequately for a longer period of the illness. The consultant who looked after my husband in the last stages of his life told me a story that illustrates this phenomenon. A brilliant world-class chess player went to visit his doctor, saying, "Something's wrong with me, I can only see six moves ahead". Six moves being still more than the average chess player can see, no one else had noticed his problem. However, he was diagnosed with advanced Alzheimer's and died within six months.

So it was for my husband, and as his sole carer, I found myself carrying the burden of physical care and of emotional grief over the loss of my beloved lifetime companion, with almost no help from outside. I pay the warmest tributes to my local interim care team in Wandsworth, whose care when my husband first came out of hospital after a bad fall, alas, lasted only six weeks. Without them—and their team incidentally has now been disbanded by the PCT—there would have been nowhere to turn for help or advice. I, with the help of my adult children, had to research the possibilities of care assistance and home adaptations on my own. I struggled to provide care and adapt our home, with the minimum of official advice or information. A reliable and identifiable source of such advice or support would be a huge advantage and should be addressed in the future strategy.

The worst, and most painful, decision, finally to opt for residential care, is where, more than at any other time, information is needed. For most of us, residential care seems a terrible last resort, but it was the therapist from the team—who remained an informal telephone adviser and friend—who bluntly told me that all I was struggling to do, and the care I could give at home, was not as good as a residential care home could provide. Like most of the population, I knew nothing about care homes and had no idea even where to start looking. Proper sources of information and support in the decision are the very least that should be provided. Most people avoid care homes, even when they live next door to them—so finding where they are and identifying the right place for a particular person is an impossibly daunting task, almost as daunting as wondering where to find the means to pay for it. I was lucky enough to be told about a website which gave brilliant assistance, and that was my introduction to the hidden world of residential care—a world which no one knew or wanted to know outside those who lived and worked within it, and those who love them.

That leads me to my third plea to government. Better staff and resources for residential care should be a priority. Behind the walls of care homes are real people, with real lives and personalities. Some have had distinguished careers. Many, as I was sadly to observe, are virtually abandoned by family and friends, and many are confused and disabled. However, those who care for them there are disgracefully poorly paid, and, although many are dedicated and caring people, they are under-trained and often poorly managed by equally poorly paid and under-educated senior staff.

I welcome the commitment in the strategy to better training and support for carers, and to an improved inspection regime. However, the quality and educational standards will improve only if the levels of pay attract a wider range of well educated people into the role of care workers and into the crucial role of managers.

If, as is projected and as has been said, one-third of us now over 65 are to end our lives with dementia, and many will need residential care, the betterment of this provision is a national priority. While we retain our voice and our capacity to argue the case, the over-65 age group should shout loud our demand for a civilised provision of residential care. We all hope that we will not need it, and we all hope to die in our own beds with our minds intact, but many of us will not achieve that good death, and those affected deserve the country's promise of at least a measure of dignity in their final years.