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Dementia Sufferers

2.30 pm

Jeremy Wright (Rugby and Kenilworth) (Con): I begin by welcoming you to the Chair, Mr. Marshall, in what I hope and believe will be an important debate. From sitting in that Chair, Mr. Marshall, you will know that debates in this Chamber are often described as important or significant, but I believe that the care of those with dementia justifies those terms.

We have not been good at recognising the significance of the matter in the recent past. To give a parochial and internal parliamentary example of that, there are 531 all-party groups, which range in significance, on subjects from nuclear power to table tennis but, as of June this year, there was no all-party group on dementia. Even within the House and despite the interest shown by individual Members such as those here today, we have not sustained pressure on the issue as we might.

It is not widely recognised outside the House that there is a medical condition that affects 700,000 people, is likely to be contracted daily by 500 new people, is terminal, has no cure, will grow in incidence by 40 per cent. in the next 15 years, and for whose development there is no treatment. If it were, we would expect the pressure on the Government to devote time and resources to it to be considerable and for it to come from many quarters. Those are the facts about dementia in Britain, but there is no sustained pressure on the Government to take action on dementia in the way that there is for other medical conditions.

Before dealing with the question of remedies, we must ask ourselves why that is the case. In February, the “Dementia UK” report was published. It was part-commissioned by the Alzheimer’s Society and was intended to provide, in its words, coherent evidence of the scale of dementia in the UK, and to combat inadequate attention from policy makers. The National Audit Office report entitled, “Improving services and support for people with dementia” was published in July. As I am sure the Minister will remind us, the Government will complete a strategy on dementia by the end of next summer. I welcome that, although it has been a long time in coming. I have no doubt that, in part, it was prompted by the two reports to which I referred.

It is clear from those reports that dementia incurs a huge cost. The NAO estimates the annual economic burden of the condition to be £14.3 billion, which is a colossal figure. It is more than the costs incurred by strokes, heart disease and cancer combined. Perhaps the scale of the difficulty has deterred us from dealing with the condition in the past, but population ageing will increase the problem.

There are emotional as well as economic reasons for our unwillingness to face up to the problem. General practitioners are sometimes unable or unwilling to make a dementia diagnosis in the absence of a cure or effective treatments. They perhaps feel that such a diagnosis would be without hope. More generally, we all find it difficult to face the prospect that the condition will affect us or someone we love. We might be able to see ourselves becoming afflicted with other conditions that get a great deal of financial and emotional support from the public, or with a physical disability, but mental health conditions are often overlooked, as the Minister
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knows, and we do not wish to face the prospect that it may happen to us. Again, that might explain why widespread, consistent and sustained pressure for action on dementia has not been brought. What needs to be done and what should we hope for in the Government strategy next year? I should like to address some issues on which I hope that the Minister will offer reassurance.

I have no doubt that the Government strategy will cover the issue of diagnosis. It is important that dementia is diagnosed not because that will set someone with the condition on a path to a cure—there is no cure—but because it enables sufferers and their families to make the necessary plans and to cope better with what is going to happen. Diagnosis brings about huge emotional stress but, at the time of the diagnosis, people have a great deal to think about and plan for. As the Minister knows, it is important—people often ask for this—that there be a single point of contact to enable people to get the necessary information and advice on the help and services that they can take advantage of. Too often, that is not available.

Officials from the Department of Health, including the chief executive of the NHS, David Nicholson, appeared before the Public Accounts Committee on 15 October to discuss the NAO report. I am pleased that the hon. Member for Southport (Dr. Pugh), who is a member of that Committee, is here today. The officials were asked about a number of things, including the issue of a single point of contact. The officials reacted positively to the idea of providing a single point of contact where none currently exists but, less encouragingly, they spoke only of how such provisions might be made within the NHS. To some extent, that is understandable—they were NHS officials, after all. However, I hope that the people who will create the Government strategy will think about the issue more widely.

I hope that the strategy group looks at examples of good practice such as the Newbury Memory clinic. Everyone who goes there is referred to an Alzheimer’s Society adviser. We could look at that model with a view to national coverage, partly because there is a great deal of experience and knowledge vested in the society and similar campaigning organisations, and because the advice and support of voluntary bodies is more welcome and trusted by those who suffer from Alzheimer’s and other forms of dementia than information from Government agencies and sources. I hope that the Minister will assure us that consideration will be given to how to provide resources to the voluntary sector to carry out that important role.

We must also look more generally at the issue of mental health services, and ask whether they are up to the challenge and are capable of dealing with the mental health problems of older people, or of going in that direction. Concerns have been expressed about those issues, not least by the Royal College of Psychiatrists. Dr. David Anderson, chair of its faculty of old age psychiatry, has levelled a fairly robust criticism of the situation that will give us cause for concern. He said:

I hope very much that the Minister will take account of those criticisms and ensure that the upcoming strategy addresses those concerns.

I fear that the issue of medical research will not be dealt with adequately in the Government’s strategy. The striking predicted growth in the incidence of dementia to more than 1 million sufferers by 2025 and to 1.7 million sufferers by 2051 is predicated on the absence of a cure and effective treatments. It seems to me, and many others, that successful research is the only way in which we can slow that growth. What is concerning is that little of the necessary research is currently funded or undertaken.

Only 1.4 per cent. of research papers since 2002 have been on this subject. Between 2000-01 and 2004-05, in respect of the national research programmes, at least, funding for research dropped in cash terms from £12.9 million to £6.8 million and, as a percentage of the health budget, from 0.03 to 0.01 per cent. I accept that the Government increased funding last year, but still the UK spends 24p per citizen on research into dementia compared with, for example, the 66p per citizen that is spent in the United States. It is illogical that we should spend so much less on research into dementia than we do on research into other conditions that cost us, as a state, proportionately much less.

One third of dementia sufferers live in a residential care home. The NAO report says that half of people in residential care homes and two thirds of people in nursing homes have some form of dementia. It follows from that, inevitably, that training for staff in residential homes is essential. Sadly, that type of quality training is not widespread, and there are consequences, one of which, as the Minister well knows, is the serious concern about inappropriate administration of sedatives in care homes. There are no two ways about it: care home staff need to be properly equipped to deal with dementia.

There are also too few specialist places. Again, on the NAO’s estimate, there are 124,000 registered places for 201,000 dementia sufferers. However, we have to be careful on this, because a good many care homes—in my constituency and, I am sure, in the constituencies of other hon. Members present—care admirably for those with the milder forms of dementia, with the support of the families concerned, despite not being technically registered places for dementia sufferers. We ought to be careful not to jeopardise the good care that is being delivered by being over-dogmatic on descriptions.

We must go on to consider the two thirds of dementia sufferers who live in their own homes, looked after in the main by 476,000 unpaid carers. Those carers are, of course, a lifeline. They are the only thing that stands between the dementia sufferer and much more expensive, not to mention undesirable, admission to residential care, which is not looked for by anyone. A substantial part of the huge cost to the nation that dementia brings with it is the time of carers, which is worth billions of pounds—money that the state would otherwise have to provide for that care. That, if there were no other reason, is a good reason to support those carers.

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Of course, carers of all types suffer a huge range of difficulties. This debate does not allow us the scope to go into all of those, but let me make the argument that those who care for dementia sufferers perhaps have it hardest of all, because caring for someone with dementia does not only place physical demands on the carer. That condition also erodes the emotional and conversational bond between the carer and the person cared for. In very many cases, we are talking about spouses or children where the rest of the family might be far away. That can be an extremely lonely experience. In essence, dementia sufferers need the carer more and more as the carer loses more and more of them. That is an extremely difficult situation for carers to find themselves in. The Minister will recognise that any dementia strategy worthy of the name must offer practical help and assistance to those who care for people with dementia.

It is also important to co-ordinate well what we do on dementia. Last week, at the Public Accounts Committee, the NHS chief executive was asked about the possibility of a national dementia care services director. His answers on that were positive. He said, in connection with experience on cancer:

That must be right. He was also asked when the appointment of such a national director might be considered and he confirmed that we might not have to wait until the Government’s dementia strategy is published. He said that

The point that the NHS chief executive was making is indicative of a wider point. The NHS operating framework for next year will be instituted in November or December of this year, substantially in advance of the publication date for the dementia strategy, so the question arises: how much of the preliminary research that will go into making up the dementia strategy will be made available to the NHS to use in determining that operating framework, so that the NHS can be influential in doing what is necessary and urgent to help dementia sufferers and their carers? We know, from what David Nicholson has already said to the Public Accounts Committee, that a national director’s position is under consideration. What else might be fed through to that operating framework in order for those changes to be made earlier, rather than later? Specifically, will there be a national dementia care services director, and will that decision be made before next summer, when the strategy is revealed?

Among the final subjects that I want to touch on, necessarily briefly, are the emerging technologies that we all hope will make life better for dementia sufferers. I am talking about telecare and extra care housing. These developments are happening throughout the country, in different localities, and are very positive and welcome. In what ways will the strategy encourage those types of solution, appropriate to the local context?

The last point, which is vital, concerns respite care. It is essential that respite care is available for dementia sufferers but, more than that, that the quality of that care is extremely high. This point is not unique to those who care for people with dementia. We know from all our experiences with carers that if the quality of respite care is not high, it is no respite at all. Many carers have
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said to us that the worst weeks of their lives have been when they took a week’s holiday, went away and spent the entire time worrying about what was happening to the person for whom they care. Yes, we should have respite care—and more of it, by all means—but may we please ensure that the quality of that care is high?

All the things that I have mentioned need to feature in the Government’s dementia strategy, which needs to make clear how they will be delivered. Simply setting goals and leaving it to health and social services authorities to decide how those goals may be met within existing budgets will not be sufficient. Worse still would be to conceive a strategy, announce it, declare victory and move on to the next problem, because a resolution of the problems that dementia poses will require sustained engagement from all of us, but particularly from the Minister and the Government.

The Minister knows that all those with dementia, all those who care for them and all those who advocate on their behalf have waited for the strategy and genuinely look forward to its publication. I hope very much that the Minister will do all that he can to ensure that when the strategy is revealed to them, they will not be disappointed.

2.49 pm

Barbara Keeley (Worsley) (Lab): I congratulate the hon. Member for Rugby and Kenilworth (Jeremy Wright) on securing the debate, which deals with a topic of great importance in my constituency and that of every hon. Member present. During carers week, I met a group of carers from Warwickshire whom the hon. Gentleman had invited to the House. I know that care and carers’ issues are of concern to him.

As parliamentary champion for carers week, I have met some constituents who care for people suffering from dementia. There were quite a number this year—that was not by design, it was just how it happened. Listening to them talk about their experiences has driven me to want to improve the support that they receive.

I have previously raised my concern about the impact of caring on carers’ health. We know too little about the subject and more research should be done, but it is clear that caring for a dementia sufferer has an impact on health. Evidence from carers themselves suggests that such caring is physically and emotionally exhausting. A study reported in the British Medical Journal noted that caring for people with dementia was stressful and that 30 to 50 per cent. of such carers experienced depression. A study in the United States has discovered that caring has an impact on the immune systems of carers for dementia sufferers and stroke victims in particular.

Dementia affects about 700,000 people in the UK, and the number of sufferers is expected to grow to 840,000 by 2010. I met a carer in my constituency who had been caring for her husband, who suffered from vascular dementia, for a number of years. He was also fed with a PEG tube—percutaneous endoscopic gastrostomy tube—and had a variety of other needs. His wife was a remarkable person who gave him a truly amazing level of care. She told me, “I am his nurse,” and described how she fought to establish a routine of care and to train paid care workers to her own exacting standards.

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The biggest issue that the carer faced related to respite care. She managed to get a break each week, with support from Crossroads Caring for Carers, but only for short periods to play bingo twice a week and to shop for two hours at the local supermarket. Every attempt to use respite care for longer periods, especially one recent attempt, had proved traumatic. In fact, as a result of poor standards in one local care home, she had to visit the home repeatedly during the week to point out to the paid staff what they were not doing correctly. Her husband came home with an infection that she thought could have been avoided. She was so stressed at the end of what was meant to have been a respite week that she developed rashes and had to visit her GP.

My constituent had further worries about the support that she should have been receiving. She found that certain essential supplies were not made available to her. Although she received a free supply of incontinence pads, the pads that she needed when changing her husband’s pads were not supplied and had to be bought. Such problems and her concern about the low quality of respite care available locally made me feel that the situation was just not good enough. I wrote to the Commission for Social Care Inspection and others on her behalf.

After carers week, I visited an excellent drop-in and buddy service in my constituency that is run by Age Concern in Salford for the carers of people with dementia. I talked to carers while the people for whom they cared were supported by Age Concern staff and volunteers. The service was designed for people suffering from early onset dementia. Some of the people there were in their 50s, but many of the carers had been supported by Age Concern’s project for so many years that they carried on coming. I commend that service and hope that it will continue to be funded through the carers grant for many years to come.

I discovered that those carers talked about similar issues to those raised by the carer whom I had visited in her home the week before. One described to me how he felt that he had to fight the system to get his benefit entitlement and the supplies that he needed, on top of fulfilling the most exacting and difficult caring responsibilities. He found the process draining. I had a long discussion with carers about the inadequacies of local respite care. They were experts. They knew where the best standards were to be found, and they knew which homes were of low quality.

My hon. Friend the Minister has described Alzheimer’s and other forms of dementia as asking new questions of our health and social care system, just as we are doing in this debate. He has announced the development of a national dementia strategy, which is to be published next year. Such a strategy must help to tackle some of the inadequacies in current services and to cope with the expected substantial increase in demand due to an increasing number of dementia sufferers.

The Minister has said that we must bring dementia “out of the shadows” and that people with dementia and their families should

I agree wholeheartedly.

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