Health: Dementia
(10 years, 10 months ago)
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Baroness Gardner of Parkes
To ask Her Majesty’s Government what action they are taking to inform the public of the particular problems associated with dementia and the support available for individuals suffering from that condition.
Baroness Gardner of Parkes (Con)
My Lords, dementia is such an important issue that I am pleased to have the opportunity to focus attention on it tonight, at a time when it has been very much in the news. My belief is that people need to be informed. Without doubt, a degree of stigma attaches to the diagnosis of dementia. For this reason, many people prefer to use the word “Alzheimer’s” rather than the wider term “dementia”. I have found this to be the case for years and we need to ensure that that attitude changes. No stigma should attach to any medical diagnosis of a condition that the person did not bring upon themselves, be it dementia, epilepsy or cancer.
I am old enough to remember clearly when, in the 1950s and earlier, people would say when they heard of someone they knew being diagnosed with cancer, “I wonder what they did to get that”. The attitude was that cancer was a punishment for the wicked only. Over the years, people have had a much greater understanding of diseases and the internet has made it easy for them to learn about cancer and its causes. Because cancer is so widespread there has been marvellous research in the subject. Information has created an awareness of the great importance of early diagnosis as the best hope of a cure. Now people know that hereditary genes may cause additional vulnerability in some people.
Just last week, I read an interesting article on a change of diet being the way to avoid dementia. It recommended a high-fat diet, which has always been deplored in the past. It stated that all white bread, pasta and sugar—in fact almost all carbohydrates—should be eliminated from one’s diet, that gluten-free products should be used and that, in following the “five a day” health advice about fruit and vegetables, only certain fruits of the low-sugar type should be consumed. This new diet seems as extreme as the low-fat diet was, but in reverse. At present, these are the views of Dr David Perlmutter, a neurologist. The article in the Times on 18 January sets out much more detail about them.
Reading constantly conflicting dietary reports is not good for anyone; what we need is solid evidence-based research. At present, it is not possible to know who will develop dementia. It is no respecter of persons and can strike the most brilliant people. Research is essential to determine what measures can be taken to prevent dementia from developing and to control the progress of the condition.
In the early stages of dementia, often a person is aware of their mental deterioration but, as the condition progresses, they can lose all awareness. Usually, short-term memory goes first. There are therapies that can be applied to bring back happy memories from long ago that give pleasure to patients.
In the Daily Telegraph of 28 December last, there was a report to the effect that dementia patients were bedblocking to the extent that urgent cases could not be admitted to major hospitals. There were other very distressing press reports, for those who have relatives or loved ones needing special care, of horrible and degrading attacks on such patients, who could not defend themselves.
Solutions are needed. I think that it is time for us to rethink some of the treatments and facilities that we have thrown out of the NHS. More daycare provision would allow patients to enjoy those hours in a safe and caring environment while providing necessary relief for carers. Respite, on a daily or longer-term break basis, is essential for relatives and carers to enable them to fulfil that very important role.
Cottage hospitals were ideal for dementia patients needing in-hospital care but who did not have urgent or immediate need for acute services. Both day centres and cottage hospitals require full-time nursing and genuinely caring staff. Those staff filled a need and were a valuable part of the NHS. Dementia cases need genuinely caring support.
I support the view—and the changed stroke care in London has proven this—that we need highly specialised centres where essential, urgent care can be provided for some life-threatening conditions. Such centres, which are being developed, should be used for cases in need of immediate and urgent high-intensity care, and the patient should remain in until ready to return home or to go to an appropriate intermediate-care facility.
Nursing is an essential part of any patient’s treatment at all levels. I think it is splendid that nurses now can obtain the highest qualifications, and I am a strong supporter of nurse practitioners. Specialist nurses in whatever field are invaluable to patients, consultants and the NHS. However, I remain convinced that it was a mistake to insist that all nurses must have A-levels and obtain full academic qualifications. The loss of the SEN qualification has done great damage. Some of the best nurses I have known—and I have been involved in most levels of the National Health Service—could never have gained sufficient A-levels for university entrance.
When I have taken part in health discussions at the Commonwealth Parliamentary Association international conferences, I have asked what other countries have done in nurse training. There is fairly wide agreement that nurses should be able to train at various levels to meet patients’ needs. Nurses with high clinical skills and qualifications are needed, but so, too, are less qualified but capable, compassionate, caring nurses who are willing to carry out the most mundane tasks where there is a need and to treat people as valuable human beings, not just cases.
In most Commonwealth countries, they have nurses train to the top level, but when they brought in academic degrees for nurses, they retained that intermediate level of nursing which we call the state enrolled nurse. I am convinced that the Government should be liaising with the nursing profession to look into the issue of our need at that intermediate level. It is no good saying that people can become “care assistants”. Even the talk of registering care assistants has not moved people in a way that would make them proud to bear that title. People consider it an honour to be called “nurse”, and so it is, but there can be nurses and nurses, and titles could be appropriately chosen to make clear those who had a degree and others.
Dementia can cause isolation as the patient becomes cut off from reality. It is only at the early stages of the condition that the patient is able to realise that they are losing contact with reality. Some treatments can delay progress, but, at present, nothing can turn back the clock. It is very hard for loved ones to see progressive dementia in a friend or relative, and it can be a great test of their patience, as often the sufferer becomes increasingly repetitious or even difficult.
The number of people likely to suffer from dementia is projected to double over the next 30 years, so there will be further pressure on services. The Local Government Association states that there will be a funding gap by 2020. It cites the Greenwich advanced dementia service as a new model of care for people with advanced dementia which, to date, has supported more than 100 people to stay in their own homes and is saving up to £265,000 a year on reduced care home costs and hospital admissions.
Dementia patients are more likely to die or suffer an injury than other patients. A study of more than 17 million hospital visits found that patients with the condition had far higher mortality rates, longer lengths of hospital stay and a higher likelihood of readmission than other patients. They are also three times more likely to suffer a fall while on a ward than other patients. There were 380,000 such incidents in a year.
As with so many health conditions, accurate, up-to-date and well presented information for patients, their families and friends is vital. Specialist charities can help with providing just such information and reassurance to support the information received from the health professionals. Today in my GP’s waiting room, I checked the large number of information leaflets for patients. These covered almost everything but there was nothing on dementia.
However, my doctor told me that the practice has put people in touch with the Contented Dementia Trust, which has proven to be of great help to carers. Often, dementia can be associated with changes in temperament, with some sufferers having spells of violence and others lengthy times of apathy. Carers find it valuable to know that these situations can arise and how to deal with or prevent them. It is an important point that these specialist charities, of which the Contented Dementia Trust is one and the Alzheimer’s Society is another, can help with providing such information and reassurance.
Marvellous progress has been made in healthcare and people are living so much longer that dementia, usually associated with ageing, is becoming a major issue. Florence Nightingale stressed the importance of the need for a patient’s cleanliness and comfort; to those, I would add caring. These essentials remain the same today. We must do more to see that genuinely caring help is provided while working towards having greater understanding, better information on the condition and a promising future due to continuing and developing research.
I thank all the speakers tonight, who can make a real contribution to the debate on this important issue. Research is the only real answer. Until we can fully establish the cause of dementia, we cannot develop methods of prevention or means of curing the condition. The Government can encourage research and increase awareness and understanding of the crucial need for genuine caring for dementia cases, and they should do so.
Baroness Turner of Camden (Lab)
My Lords, I thank the noble Baroness, Lady Gardner of Parkes, for introducing this timely debate. I have a personal interest in participating. My sister has recently been diagnosed with suffering from Alzheimer’s disease and has dementia. I spent the summer holiday and the recent Christmas break with her, trying to assist. My sister is a retired teacher and a widow, living alone in Wiltshire. Her late husband had also been a teacher. He was a former county councillor and had been chairman of the local parish council. My sister had also been active locally. The result is that she has had a great deal of local support, which has been very valuable in her current circumstances. The local Alzheimer’s Society has been very helpful and the county council has a mental health committee, which has been of assistance. An organisation called Carewatch has also helped.
While I was there in the summer, I arranged for people from those organisations to call and see her regularly. I also organised for a lifeline to be installed: an alarm system with a wrist-held alarm, which was to be rung if she needed to do so. The very nice people who call to see her regularly make sure that she takes the medicines prescribed for her and that she has the food she needs. She has very good neighbours to help, who arrange to drive her if she needs to go out. A neighbour also deals with the garden for her. I saw local solicitors and, through them, arranged for a relative to take on the responsibility of power of attorney so that she does not have to bother about her financial affairs, which are in good order. She has a pension, a widow’s pension and an attendance allowance. It is therefore possible for her to pay for the services that she needs. That is important, for any disability is expensive, and this is no exception. It is also expensive if you need to pay for assistance. The procedures in relation to power of attorney are of course extremely complicated, as well as expensive, and there is no reason why the Government should not intervene to make the arrangements less so.
I realise, of course, that not everyone is fortunate enough to have this kind of support. It is difficult, I am sure, to come to terms with what happens to people who have this disease. It was hard for me. My sister had had a successful career. When I saw her after she had become ill, it was difficult to cope with what had happened. She would sit in her well equipped kitchen and not know what to do. We saw representatives of the Alzheimer’s Society; she told them that she was frightened of the microwave, and they told me that I should not try to train her to use it again. She could not write. I wrote for her if she needed to do any writing, and got her to sign. She did not use her computer, of course, and had not done so for a very long time. Many people that she knew she no longer recognised. Gradually one worked out how best to arrange and organise living for her. The support of local people is invaluable.
That is why the campaign by the Alzheimer’s Society is so important. It understands that people with this illness are best looked after at home in familiar surroundings. That is what we have tried to arrange for my sister. She is able to lead a fairly normal life because of the support of friends, family and local organisations. Through the campaign that the Alzheimer’s Society has now embarked upon, I hope that we shall be able to do this for other sufferers. Many people who are alone and do not have this local support are, in my view, badly in need of assistance of the kind that the noble Baroness made very clear in introducing this debate.
I am very grateful to the noble Baroness for giving the opportunity to debate this awful disease, but it can be dealt with if there is local support and if people understand what they are attempting to deal with. I hope that today’s debate will be a step in that right direction.
Baroness Greengross (CB)
My Lords, I congratulate the noble Baronesses, Lady Gardner and Lady Turner, on their excellent and very moving speeches.
I start by saying that I have rarely been as proud of being British as I was recently when this country—or, rather, the Prime Minister, because of his personal commitment—secured here in London the G8 summit on dementia. That was an enormously important achievement. I say that with real pride because I chair the All-Party Group on Dementia. We are an extremely active all-party group that has produced a lot of reports on many areas of interest. We have looked at the fact that dementia patients stay longer in hospital when they go in for a fractured femur and we were part of the campaign to reduce the use of anti-psychotics. We have had many quite successful inquiries and policies have radically changed because of the work of colleagues on the all-party group. However, there is still a huge way to go.
Dementia is certainly the new cancer, as the noble Baroness, Lady Gardner, said. It is not very long ago that you could not really talk about it. The interest in, and commitment to, doing something about dementia now is really important and it is excellent that we have got that far. There are still, however, many problems. Dementia is a disaster if you are suddenly diagnosed. You have no idea how to cope with the diagnosis or where to go for help. You are absolutely struck by your inability to move forward. However, it should not be seen in that way because a lot can be done. Of course we do not have all the research that needs to be done—the G8 made that clear. As a result, however, some very hopeful research work is being undertaken in the United States and the money is beginning to flow in as well. But there is still a long way to go on research.
In this debate we are looking at what has to be done now to alleviate the situation of people when they receive a diagnosis or even before, when they suspect, because of memory loss, that something is going wrong. It is a progressive and a terminal disease which, at least at the beginning, attracts social care funding and not health service funding. Over much of their life course many of those who have the disease will experience problems in getting financial help so that they can live adequately. It can be a disaster and we need to do something now. The noble Earl is doing a great deal to ensure that the Care Bill, which has now gone to the Commons, will help many people with dementia. However, a huge amount needs to be done.
We have to see dementia as one element of the comorbidities that many older people face—and it is usually older people, as the noble Baroness said, who get a form of dementia. We have to concentrate on the fact that if people have dementia, the other conditions from which they suffer are sometimes ignored, or vice-versa. Dementia also has to be seen in the light of the huge stigma that still surrounds its diagnosis. For many people, even GPs, it is better to ignore it than to diagnose somebody when they do not feel that there is a great deal they can do to help. Many people try very hard to forget that it is happening, and if they forget it is happening, their quality of life will be reduced enormously.
Much can be done. We have to take into account that local commissioning is an excellent way of improving the situation as long as it works properly. I chaired a meeting this morning with commissioners to look at what can be done to improve the lives of people right at the beginning when they know that something is wrong, before they are diagnosed and immediately afterwards. As soon as they feel that there is some memory loss or they begin to worry they need to get help and not wait for a diagnosis. They need to get help and start the process of making a plan of action and support for that person, the family and the wider community where possible. Things can be done to improve the quality of life.
We know that much can be done in preventive care, particularly with vascular dementia. A change in lifestyle can help a great deal to delay the worst aspects of that dementia and, indeed, some of the others. However, not all can be helped in that way. What is necessary then is the coming together of support mechanisms—that is, people—who can really help.
We have to be certain that the good measures in the Care Bill are introduced so that we have a co-ordinated plan of action for anybody who is diagnosed eventually with some form of dementia. The right now of carers as well as of patients to a proper assessment leads to action, and this is not easy. It is not easy for local authorities and not easy for commissioners in healthcare, because there is a shortage of funds. However, we have to find the funds because dementia is a priority. It is a terminal disease, so it is extraordinary that it gets primarily social funding from local authorities rather than health funding. We have to integrate. That is what the Care Bill is aiming to do, so we have to give it our total support.
Memory clinics need to be the first place that people go to when they feel there is something wrong. That is when the support services need to be brought together to help somebody to find their way through the maze of services. They need to inform themselves about them and make sure they are available to them. That is where other people in the local community can do so much, as the noble Baroness, Lady Turner, said. When there are good services around that can be brought in early, we can get this as right as possible. Even before the memory clinic people have to start recognising that something is wrong, and then you need to have a co-ordinated approach to care. That is essential. We need to have a navigator/co-ordinator who can go in and advise that person and that person’s family how to get the best care that is available locally so that their quality of life does not deteriorate. When they are diagnosed, this is even more important, so we need a navigator/co-ordinator of all the services. The services need to be brought together so that they are not difficult to find.
We need people to understand that post-diagnosis, life can be very good. One of the participants at the meeting with about 30 commissioners this morning was an early-onset dementia patient. He was diagnosed at the age of 49—10 years ago, I think. He was still perfectly capable of taking a very active role in the debate we were having because he had the right support around him all the time. That is essential. You need one place where all the services are available, you need one navigator/co-ordinator to provide those services for somebody and you need to convince that person and the carers that life can be good for a very long time. We need to have contact with all the advisers straightaway, one service co-ordinator and a strategic service integration scheme. That is key. We need one location, one centre where all the services are brought together and, rather like when you have a baby, you need to have a list of the services given to you so that you know who to ask about everything. We can do that.
We can embed personalisation in what we do. We can look to the groups that really cannot cope, and which have no idea of local services, and to our minority groups, some of which do not even have a name for Alzheimer’s or dementia. There are huge problems there. We need to focus on those people. We really need above all to listen to, communicate with and involve people with dementia every step of the way because they have not lost their humanity and their ability to be part of society. We have to trust them to know what they need and want and bring the services close to them so that they can benefit from the many important new ways of delivering services which will be enhanced, I hope, by the Care Bill when it becomes part of our legislation.
Lord Jones (Lab)
My Lords, I most sincerely thank the noble Baroness, Lady Gardner of Parkes, for this debate and acknowledge the importance of the subject and the skilfully drafted Question that frames our debate.
I have no doubt that the Government are determined to address the issues of dementia. When I was a Health Minister in the 1970s, serving Prime Ministers Wilson and Callaghan, one scarcely heard the word “dementia”. The NHS then was a battleground between administrators, unions and consultants. A royal commission was hopefully deployed; the International Monetary Fund moved in, and there was competitive recruitment between unions. Ministers were moved out or sacked, and there were endless resource-allocation working parties. London was accused of gaining too much of the available moneys.
The question of the noble Baroness, Lady Gardner, is as strategic as any that faces administrators and politicians who now give leadership to the nation. The scale of the challenge of dementia socially and financially in the future is truly massive. The amount of money available is inevitably insufficient. The amount of research needs to be expanded, if not the quality. Already, our social services and NHS are stretched almost to breaking point. We have on our hands, in effect, an emergency. Longevity guarantees that this massive national challenge will not go away.
In all of this, there is a shining light: the Alzheimer’s Society, one of Britain’s greatest and most relevant charities. It stands ready to assist and advise countless families whose happiness is blighted by the emergence of dementia in a loved family member. I have the privilege of being a dementia champion in Wales and, at the grass roots of community, I have seen the good done by ordinary people for those who are at their wits’ end struggling to cope with the challenges of domestic change. As president of the society in north Wales for some 20 years, I have seen the enthusiasm of volunteers and their assistance, encouragement, organisation and fund-raising—all of these positives are constant and most effective. These activities generate friendship, teamwork, humour and even expertise though training as a friend. I am sure that the Alzheimer’s Society and its headquarters will continue to harness this great reservoir of energy and goodwill at the grass roots.
The society has a deeply committed communicator as chief executive, and a wise, experienced chair in Dame Jill Morgan. My hope is that the Minister will listen carefully to the demands and advice of the Alzheimer’s Society’s leadership. The Minister is, after all, accessible and open-minded in his dedication to the health service. However, the national response to the dementia emergency will be at its most positive at the grass roots, by mobilising the volunteer and by appealing to the generosity, practicality and familial loyalty at local level. Facing up to the national challenge of dementia will require more than the findings and promulgations of the Westminster and Whitehall village.
There are exemplary approaches being made in my own country of Wales. The director for Wales, Mrs Sue Phelps, called a conference in Wrexham, north Wales, recently. It was packed out by an army of youthful volunteers, family members, and dementia sufferers. The society’s Flintshire office, led by Mrs Baldini, organised this hearteningly successful gathering in the principal town of north Wales. We heard of best practice. We had professorial insights and examples of families coping. It was an inspirational gathering, and pointed to—as the noble Baroness, Lady Gardner, seeks—the support available.
Two central questions emerged. First, what are the Government doing to increase the numbers of those receiving formal diagnosis? I hope there may be a reply from the Front Bench tonight. Secondly, what support is on offer for people following a diagnosis? If the Alzheimer’s Society is a shining light, the great European aerospace company, Airbus, is a white knight extraordinaire. It has made the Alzheimer’s Society its preferred national charity and it is on course to raise, in this calendar year, £220,000 or more for responses to dementia. The able charity organiser is Mr Phil McGraa, based in north-east Wales at the giant, world-class aerospace factory at Broughton, which is where I live. More than 6,000 women and men work at that plant; they are big-hearted, supportive and imaginative in their financial and organisational support. They are great people; they are skilled and caring citizens.
Airbus and the north-east Wales office of the Alzheimer’s Society joined forces to organise a giant memory walk for the purpose of fundraising for dementia sufferers. The walk took place in perfect, warm, sunny weather on an immaculately curated racecourse, Bangor-on-Dee, with superb views of our Welsh mountains. There were no horses, but many hundreds of Airbus workers, volunteers and families in the walk. This mass memory walk was a thundering success, with the Airbus sponsor, the Alzheimer’s Society, volunteers and countless families all co-operating at the grassroots. I should say that this racecourse does not have an all-weather surface.
Quite simply, Airbus is magnificent. It exports billions of pounds of product, outperforms its great competitor, Boeing, and raises tens of thousands of pounds for dementia suffers. It has encouraged families with dementia sufferers in their midst in the most practical way, by being alongside them. I was fortunate to be on the memory walk, and it was heartening to meet a family of 17, and all of them were working for who they knew as their granddad. The support services on the walk were partly provided by high school pupils from Castell Alun High School, who showed great promise on that day.
My message to the Minister and to the Alzheimer’s Society is to invest in the localities and to use the great reservoir of experience, good will and practicality of all the volunteers. After all, they—the ordinary families—experience the distress and bewilderment when this dreadful condition enters the family. Every high school with involvement in that community could begin what might become a lifelong commitment to helping dementia sufferers. After all, the future years will see much more domiciliary care for dementia sufferers, and perhaps our youth will be able to tackle this emergency.
Lord Hunt of Kings Heath (Lab)
First, I refer noble Lords to my health interests as chair of a foundation trust, president of GSI and consultant and trainer with Cumberlege Connections. I, too, would like very much to thank the noble Baroness, Lady Gardner of Parkes, for allowing us to debate this important issue tonight. I also echo the tribute paid by my noble friend Lord Jones to the Alzheimer’s Society, both for the work that it does and for the very helpful briefing that I have received tonight.
If we come back to the question put by the noble Baroness, Lady Gardner, she is surely right about the important focus on improving information to the public, and trying to get over some of the stigma problems to which she referred. She referred to cancer—and I remember when, in the 1950s, people would not actually use the word “cancer”. It was almost hidden away. Clearly, there are issues with dementia, which we must tackle with enthusiasm. My noble friend Lady Turner spoke eloquently of the terrible impact that dementia can have on loved ones.
On a more optimistic note, both the noble Baroness, Lady Greengross, and the noble Lord, Lord Jones, said that much can be done. However, the problem is that often people do not know that that is the case. A major problem is the lack of information in many cases when a diagnosis is made. That, of course, assumes that a diagnosis is made. My understanding is that diagnosis rates are currently only 48% in the UK, and vary widely across the country. This suggests that more than half of people with dementia do not receive a formal diagnosis and therefore do not get access to vital treatment and support. How does the noble Earl think that we might improve diagnosis rates? Will he also consider the Alzheimer’s Society’s priorities for improving post-diagnostic support, to which my noble friend Lord Jones referred? That society’s priorities are that health and care professionals should provide post-diagnosis information packs, that information must be accessible and useful to people with dementia and not just available digitally—a very important point—and that commissioners must also consider the needs of carers of people with dementia in their local plans.
When a diagnosis is made of any condition, not just dementia, why is the information provided by societies such as the Alzheimer’s Society not automatically given to patients? It has long been a puzzle to me why the health service in particular finds it so difficult to give out this information. Any help the noble Earl can give in that regard would be appreciated.
Will the noble Earl say a little more about research? A number of noble Lords have referred to this. Research into dementia has improved but there is a long way to go compared with research into other diseases. I hope that the noble Earl will be prepared to comment on his own department’s policies on this issue and on the influence of the Medical Research Council in this area.
My noble friend Lady Turner said that people with dementia are best looked after at home. That must surely be right. However, the noble Earl will know that at the moment many patients with dementia are in National Health Service acute hospitals. Some people use the wretched term “bed blocking”, which I think is very unfortunate. However, there is no doubt that one of the problems for accident and emergency departments is the difficulty of discharging patients with dementia once they get to hospital, and, of course, those patients often suffer from co-morbidities. Has the noble Earl looked at the report of the Royal College of Physicians which suggests that, rather than having specialised hospital consultants, we need general physicians who can treat patients with co-morbidities? This is very relevant to people with dementia. Will he write to me on that issue if he cannot comment on it today?
The noble Baroness, Lady Gardner of Parkes, referred to nursing. I very much agree with her that in retrospect the phasing out of state enrolled nurses was an absolute disaster. I am afraid that it was done at the behest of the nursing profession. It is not satisfactory that we now have only one tier of registered nurse. I will not go back to the issue of healthcare assistant regulation, although rumours reach one of a Bill that will allow us to debate that again at some point in the near future. However, the substantive point the noble Baroness made was that we need to look at nurse training and, I think, healthcare assistant training, in this area.
We can tackle this issue only in a wider context. My noble friend Lord Jones said that the Question posed by the noble Baroness is a strategic one. I very much agree with that. The noble Baroness, Lady Greengross, talked of the need, in the case of an individual with dementia, for a navigator and co-ordinator. My argument would be that we need the equivalent at the national level also. We have the national dementia strategy for England but my understanding is that it is due to end in April 2014. I ask the noble Earl whether he thinks that the Government would be prepared to run with another national strategy.
This is a terrible illness. It impacts on 850,000 people at the moment; I believe that that figure is estimated to increase to 1 million or so by 2021. The need for national leadership and a national strategy is overwhelming. The noble Earl might not be able to commit to that tonight but I hope that he will take the message from noble Lords here, which is that this is a terrible illness, much can be done to help people with dementia if we have co-ordinated action, much more research ought to be done, and we need greater co-ordination at local level.
I hope that the noble Earl will pick up the suggestion of the noble Baroness, Lady Greengross, that local co-ordinators and navigators of care would be extremely helpful. Perhaps he will also pick up the point raised by my noble friend Lord Jones about the role of business and industry in supporting local societies. He gave a brilliant example of how that can pull people together and provide real support for organisations such as the Alzheimer’s Society at local level.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con)
My Lords, this has been an excellent short debate. I thank all contributors but, in particular, my noble friend Lady Gardner for having tabled this important subject and for having introduced it with such insight.
As has been said, dementia is one of the biggest challenges society is facing, but it is a challenge that we are determined to get to grips with. That is why dementia is a major priority for the UK Government, and my right honourable friend the Prime Minister launched the dementia challenge last year. We must fight back on an international scale, which is why we hosted the first G8 summit on dementia in December, as the noble Baroness, Lady Greengross, kindly mentioned, and we will continue to provide global leadership.
Five years ago, the national dementia strategy was developed. It has achieved a lot and laid the foundations for real change in how people with dementia and their carers are helped to live well with the condition. However, we recognised the need to build on the strategy and that is why the Prime Minister’s challenge on dementia is the main vehicle driving change and improvement across health and care in the community and for research. The Prime Minister’s challenge runs to 2015, not just outliving the dementia strategy but broadening its vision and providing better accountability. The challenge sets out the Government’s commitment to increase diagnosis rates, raise awareness and understanding, and double funding for research into dementia by 2015.
There are 670,000 people in England with dementia, a number expected to double in the next 30 years. Dementia costs society an estimated £19 billion a year, and currently less than half of all people with dementia have a formal diagnosis. One of the main aims of the Prime Minister’s challenge is to improve awareness of the condition by creating dementia-friendly communities. If we are to help people to live well with dementia, we need all areas of society to become dementia-friendly—not just health and social care but banks, supermarkets, bus stations, post offices and all the different forms of local public services. All those places can become more dementia-aware and supportive of people with dementia and, if they do, people with dementia will benefit enormously, continuing to connect with society in ways we all take for granted.
Last October, Lloyds Bank and the Alzheimer’s Society launched a charter encouraging banks and building societies to join them in becoming dementia-friendly, and we need other companies to follow suit. I was impressed by all that I heard from the noble Lord, Lord Jones, about Airbus. The noble Baroness, Lady Turner, in her moving speech, referred to the importance of local support for people with dementia, and I wholeheartedly agreed with what she said.
The Dementia Friends scheme, which aims to make 1 million people more aware and understanding of dementia, is helping to break down the barriers between people with the condition and their local communities, with funding from the Department of Health and the Cabinet Office. The noble Lord, Lord Jones, was absolutely right in all that he said on this subject. My right honourable friends the Prime Minister and Deputy Prime Minister and Ministers at the Department of Health are all Dementia Friends, as are more than 500 Department of Health staff. I myself am a Dementia Friend. It has helped me to understand the impact that this condition has not just on the individual but on their families who care for them. Dementia Friends is one of several components in creating dementia-friendly communities. Alzheimer’s Society guidance sets out the criteria for becoming a dementia-friendly community, and already 34 communities, from York to Plymouth, have signed up to the scheme, with others having expressed an interest in doing so.
This spring, Public Health England, working with the Alzheimer’s Society, will launch a three-year £12 million social movement to make the nation more aware of dementia and enable people to understand how they can help those with the condition. The “Dementia Movement” will aim to do three main things. The first will be to reduce fear and stigma through activity that improves public attitudes towards dementia and gives more people the confidence to engage with those with dementia. It will also aim to increase social connectedness—for example, by prompting and supporting conversations between people in the early stages of dementia and their families, friends and neighbours. It will aim, too, to improve skills by recruiting people into the Dementia Friends programme so that more people know how to help those with dementia. The movement will target business partners in the private, public and voluntary sectors, and urge them to continue to implement the Dementia Friends programme within their organisations, giving their employees an understanding of the supportive action that they can take to help people with dementia.
The noble Baroness, Lady Greengross, spoke with great authority about the importance of diagnosis, co-ordinated care and support, and I very much agreed with what she said. The noble Lord, Lord Jones, also laid emphasis on timely diagnosis. Raising awareness of the signs and symptoms of dementia is the first step towards getting a formal diagnosis—one that will lead to people being able to access advice, information, care and support. The number of people with a diagnosis is increasing year on year, but the noble Lord, Lord Hunt, was right: still only just under half of all people with dementia have a diagnosis. That is simply not good enough and it is why NHS England has committed to raising the diagnosis rate to two-thirds by 2015.
Clinical commissioning groups are working with their local councils and other partners to better understand how widespread dementia is in their communities, including among people living in local care homes. This will mean that they can identify and support people with dementia in a timely way. GPs are now able to use the new directed enhanced service to improve the diagnosis of dementia by asking people in certain at-risk groups about their memory. This proactive approach should help to identify patients who are showing the early signs of dementia.
The noble Baroness, Lady Greengross, and the noble Lord, Lord Hunt, asked about steps being taken to ensure the identification and treatment of comorbidities in people with dementia. If I may say so, that question is extremely pertinent. NHS England has committed to increasing the dementia diagnosis rate, as I mentioned. A diagnosis of dementia is vital in accessing support and treatment across the board, not just for dementia but for all comorbid conditions.
Once people have a diagnosis. they need to understand the implications of the condition and how they can access advice, information and support to help them and their carers to live as well as they can with the condition. If the condition is advanced, some people will need care and support immediately, but those diagnosed at an earlier stage may need only advice and information. The noble Lord, Lord Hunt, rightly stressed the need to provide information post-diagnosis.
My noble friend Lady Gardner mentioned the important role of charities, as did the noble Lord, Lord Jones, who rightly praised the work of the Alzheimer’s Society. The dementia guide is given to a person with dementia when they receive a diagnosis, and almost 100,000 copies have been distributed since last July. The NHS Choices website has dedicated pages for dementia, highlighting the range of services and support available to people with dementia and their carers. Regional NHS websites, such as myhealthlondon.nhs.uk provide details of healthcare and voluntary services available locally. A free national helpline helps carers to access information about local and national services and individual advice and support.
My noble friend referred to the need for good nursing. Services are no good without a skilled workforce. That is why Health Education England is ensuring that staff are dementia-trained. In November, it hit its target to deliver dementia training to 100,000 staff ahead of schedule, and it will continue to roll out training to improve the skills of the workforce. We want people with dementia to receive a better quality of care from informed and trained staff through the CQUIN programme. NHS England has asked all hospitals to identify a senior clinical lead for dementia, to ensure that carers of people with dementia are adequately supported, and that this is reported at board level. Every person joining the social care workforce will undertake common induction standards, which include aspects of dementia awareness. In addition, a number of units and qualifications at vocational levels 2 and 3 have been developed by Skills for Care and Skills for Health to support the development of the social care and health workforce, working with people with dementia.
The noble Lord, Lord Hunt, and my noble friend Lady Gardner asked about research. Doubling funding for research, as I mentioned, is part of the Prime Minister’s challenge, and the quality and quantity of research proposals for dementia are improving. Last year £20 million was awarded to six proposals which will look at areas such as Living Well with Dementia and dementia-associated visual impairment. All the G8 countries signed up to the communiqué at the end of the conference and one of the pledges was significantly to increase the amount spent on dementia research.
As I have outlined, there are a range of services and information sources available to support people with dementia and their carers, but this is only the beginning and we have a long way to go until everyone with dementia is able to live as well as they can with the condition. We are not resting on our laurels. The Government are committed to doing more. We are currently working with our partners in the NHS, social care, local government, public health and the Alzheimer’s Society on a call to action to improve post-diagnosis support for people with dementia and their carers—support on which the noble Lord, Lord Jones, rightly laid emphasis. The work is at an early stage but, over the next couple of months, we will be developing an offer of what should be available to everyone to ensure that we have achieved the Government’s goal of people with dementia and their carers having access to services to help them live well within our society for longer.