Dementia
(12 years, 5 months ago)
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Lord Touhig
To ask Her Majesty’s Government what steps they are taking to provide support for people with dementia.
Lord Touhig
My Lords, a debate on dementia is long overdue. Indeed, the last time your Lordships’ House debated dementia was on 25 June 2009.
Today there are 800,000 people with dementia in Great Britain, and two-thirds of them are women. Currently only 43 per cent of people with dementia have a formal diagnosis, yet we all know that diagnosis is the key to accessing information, treatment and support services. There will be more than 1 million people with dementia by 2021 in this country. This year alone it will cost us £23 billion. Currently there are 600,000 family carers of people with dementia.
While significant resources are being spent on dementia, they are often being spent inefficiently and in ways that do not meet the needs or aspirations of the people with dementia and their families. Improving services for people with dementia could therefore boost outcomes and also prove cost effective for the taxpayer. Over a million people living with dementia in the United Kingdom by 2021 will present a major challenge as people with dementia are significant users of both health and social care services, and there remains an unacceptable variation across the country in the quality of services and support. Too often, people with dementia are unable to access the support they need and are frequently failed by the current system. Urgent reform of the social care system is needed, along with a real priority attached to dementia, if we are to improve lives.
As a former member of the Public Accounts Committee in the other place, I well remember the 2007 report by the National Audit Office which found that the health and social care response to dementia was inadequate and that spending on dementia, while significant, was poorly used. The Alzheimer’s Society 2009 report, Counting the Cost, showed that there was an unacceptable variation in the care of people with dementia in the hospital service. It found that people with dementia were staying in hospital on average a week longer than other people admitted for the same reason. A report for the Department of Health by Professor Banerjee in 2009 estimated that 180,000 people with dementia were being prescribed anti-psychotic drugs but that two-thirds of the prescriptions were inappropriate. Anti-psychotics rob people with dementia of their quality of life and lead to 1,800 deaths a year. In January 2010, the National Audit Office’s interim report on dementia found that progress on implementing the national dementia strategy in England had been patchy and had got off to a slow start. The Alzheimer’s Society’s 2011 report, Support. Stay. Save., found that half of people with dementia were not getting the support they need.
Last March, the Prime Minister’s challenge on dementia laid out further key commitments on research, healthcare and dementia-friendly communities. The Queen’s Speech in May outlined the Government’s plans to introduce a draft Care and Support Bill for England. We are told that the Bill will set out how the Government will modernise care and support law to ensure that local authorities fit their services around the needs, outcomes, experiences and aspirations of the people. We are told that it will build on a personal budget agenda, simplify the laws around social care and improve the way in which people get information about their due entitlements. Dementia plans and strategies are in place in Northern Ireland, Wales and Scotland, all of which emphasise the need to improve awareness, diagnosis and services.
While the vast majority of care for people with dementia is undertaken by family carers, people with dementia frequently use social care services. The current system does not work for the person receiving care, it does not work for the person providing the care and it certainly does not work for the taxpayer. The chronic underfunding of social care over many years has driven down quality, choice and accessibility. Over the past four years, the increased demand for social care has outstripped the increase in expenditure by 9 per cent, and the ability of people with dementia to live well is increasingly under strain. People with dementia are being unfairly penalised by the existence of what is called the dementia tax.
Individuals and families are spending tens of thousands of pounds to access the care they need, while care for people with other medical conditions, such as cancer, is free. The Alzheimer Society’s 2008 report, The Dementia Tax, found that people with dementia and their families are willing to make a contribution to the costs of their care. However, they need a fairer deal which protects them against very high costs and which also guarantees the quality of care. Where one lives determines the level of care received, as councils decide locally at what level to start providing support. Across the country, people cannot get essential care, while some in a neighbouring authority can. A patchwork of complex rules and assessments makes claiming what people are entitled to difficult and off-putting. The highest spending local authority, Tower Hamlets, spends five times more than Cornwall, the lowest spending authority.
People have a limited say over the care they receive. Choice and control is the experience of too few people. Out of two million older people in England with care-related needs, 800,000 receive no formal support at all. The lack of support early in the condition leads to a substantial pressure on long-term care and acute sectors. Some 10% of the respondents to the survey Support. Stay. Save. reported that the person with dementia was admitted earlier than expected into long-term care because of inadequate support in the community early on. A similar proportion reported that the person with dementia was admitted to hospital when it could have been avoided because there was lack of early support in the community. This is despite evidence that early intervention is both cost-effective and is what people with dementia and their carers want. The care paid for by local authorities is too often provided to people who have significant need when evidence shows that investing in care earlier would reduce demands on the National Health Service. The Alzheimer’s Society has been campaigning for many years for a change in the way we pay for care. The forthcoming social care and support White Paper is an historic opportunity to overhaul our care and support system.
What can we do to make a difference? The Dilnot commission proposed a fair system where no one would lose more than 30% of their assets. That would help. However, without additional government funding, England’s social care system will not be fixed. The recent Nuffield Trust report identified a number of funding options that could release funds to invest in the social care system. The Government must begin a public debate on where money for care could come from. Money intended for social care must be used for care, and not for filling in potholes. At present, each local authority decides which of the four levels of fair access to care services eligibility criteria they will fund: low, moderate, substantial or critical. It is profoundly unfair that two people living either side of a local authority boundary—they could be living either side of a road—could be entitled to significantly different levels of care. The Government must introduce a national eligibility strategy to improve consistency and fairness across the country. Progress has been made, but we have a long way to go.
Just over two years ago I took part in a march. It was a memorial march in memory of people with dementia who had died. I walked with a man whose wife had not spoken a word in 18 months. He was her carer; he sometimes had respite when his son could take over. His wife was doubly incontinent; they had no shower or toilet facilities on the ground floor. He told me that the only day he was confident that she was kept clean was the day that she went to a day centre, where they had showers, and so forth. He was battling hard in order to find funds to provide these basic facilities on the ground floor of his home. I came away full of despair after talking to that man. I am sure that noble Lords must have had similar encounters.
When we last considered this subject, in a debate introduced by the noble Baroness, Lady Murphy, in 2009, she told us that the average age of your Lordships was 68 and that one third of us will die with dementia. That brings it home that every one of us must know or will have an encounter with someone who has dementia. We really must do something about it. We have a duty to those in our society who are desperately locked away almost as prisoners of illnesses of the mind. It is down to those of us who can still articulate and make the case to ensure that the Government and we as a society do something to improve the quality of life for people with dementia.
Baroness Barker
My Lords, I thank the noble Lord, Lord Touhig, for enabling us to hold this debate and for his eloquent and moving introduction. I confess that I am a veteran of pretty much every one of our debates in this House over the past 10 years. We have had dementia strategies and dementia plans, and I congratulate the previous Government on their work on those important documents, which have moved us forward. Dementia is something that affected my family until last December, when my mum died having, in her words, “kind of lost the place a little bit”. That was her euphemistic way of talking about dementia. It is a subject that for the past 20 years I have followed with a great deal of interest because, as noble Lords know, I work with older people.
I want to sound a somewhat more hopeful note than did the noble Lord, Lord Touhig, and I do so because two or three things have happened that give cause for optimism. Building on the work of people like the noble Baroness, Lady Greengross, and the all-party parliamentary group, as well as on important reports from Alzheimer’s bodies, the Prime Minister’s Challenge on Dementia and the updated dementia strategy are extremely good documents because they move us forward. Not only are they forward-looking, they are quite detailed. The strategy talks not just in broad terms about the need for more research and support, but it begins to draw down different areas in order to achieve a series of things which, over the next five years, will bring about real and actual change in both communities and the health service. They will be of benefit to people who have dementia and their carers.
The Prime Minister’s Challenge on Dementia is based on three things: raising awareness and understanding, early diagnosis and support, and enabling people to live well. There is a commitment to increase research funding to the unprecedented level of £66 million, some of which is to be spent in social care, which is extremely helpful. Some of the money will be spent on redesigning services in the health service, but some will also go to the Medical Research Council for further research into brain scanning. We are beginning to move away from broad strategies into more targeted and focused areas. I was pleased to see that resources are to be devoted to developing dementia-friendly communities. That is not jargon. People are starting to work towards a definition of what that is all about.
For more than 20 years I have followed the work of the Dementia Services Development Centre at Stirling University, both under its previous director and now under Professor June Andrews. It has contributed more than any other organisation to the understanding of dementia as an illness, to understanding the needs of carers, and to enabling academics and healthcare professionals to move forward. Recently, Professor Andrews gave a talk about design. She and her colleagues had been involved in a community pilot study in the Forth Valley. People from various disciplines worked for a year to see how, within their existing resources, they could manage things differently. I was pleased to see that not just the health service but organisations like the police, libraries, churches and the general public felt more confident in their ability to deal and interact with people who have dementia. We are getting close to the point where a diagnosis of dementia is not going to lead to older people and their carers automatically being cut off from the life they enjoyed previously and which, for many years to come, may still have some meaning for them.
Professor Andrews talked about the issue of design, and particularly design in people’s homes. I am very pleased that some of the people involved in the Prime Minister’s challenge are designers and private companies, looking at how they can respond in practical ways to the challenge of dementia. Professor Andrews also talked about the need to develop things like glass-fronted fridges so that people know that they have food. I look forward to the time when homes have glass-fronted freezers because I stopped counting the times that I had to throw away a freezer’s worth of food because my mum forgot about it and it went bad. Design, lighting and so on in people’s homes can make a tremendous difference to their ability to remember.
I want to focus on one particular area that has not been mentioned so far. Many older people with dementia also have other disabilities. If you are a carer supporting somebody and you try to find out about adaptations, they will be designed for a particular physical disability and not for someone who has a physical disability and also dementia. In this hopeful time, designers could look at the potential to design appliances for the home for people who have the multiple disabilities that most older people will develop.
One particular area we should focus on is telecommunications. It is great that there is enormous change going on in the world of telecommunications and that, for example, phones can now be used by people with hearing disabilities who could not use one before. Yet there is absolutely no point in having a phone that has wonderful functionality if you cannot learn to use it. Professor Andrews made an important point about the ability of people to design things in future that will have new functionality but will look like the objects that people with dementia remember—retro-designing things so that people can continue to use them.
I am also pleased that in the dementia challenge we are finally recognising that in future all health and social care professionals, whatever their discipline, will deal with people who have dementia. That will include dentists, pharmacists and others. We are now moving to a point where basic pre-qualification training for all health and social care professionals has to include dementia, whatever the area of specialism.
In the short time available, I will raise one more point. Last December, the Alzheimer’s Society produced a report, Short Changed, about the experiences of older people with dementia, and their carers, with banking and financial services. Older people with dementia are particularly vulnerable to financial abuse. We have known that for years. We knew it 15 years ago when the noble Baroness, Lady Greengross, set up Action on Elder Abuse. It is now more than five years since the passage of the Mental Capacity Act. At that time, the Office of Fair Trading and the British Bankers’ Association produced guidelines about tightening up procedures in relation to people who lack mental capacity, but we still have problems. Anybody who listens to “Money Box” will regularly hear reports of irresponsible lending to people with dementia.
I make one particular suggestion: will the Government, with the Office of Fair Trading and the British Bankers’ Association, now do some further work on banking services for people who lack capacity? Will that work draw a difference between people who have learning disabilities, people who have mental health problems which may be episodic and people who have dementia? All three have different issues but at the moment the banks treat them all the same. That is causing a problem, not least for carers of people who have dementia, who are worried and trying desperately to enable their relatives to keep control of their finances for as long as they can. They want a backstop for when the time comes when their loved ones can no longer manage.
Dementia is a terrible thing, and it is going to happen to more and more people as we live longer. It is going to become a part of life for more of us. I am not a Pollyanna, but having read the dementia strategy and the Prime Minister’s Challenge on Dementia, I think we now have reason to be much more hopeful than we have ever been that we will be able to see people living well with this terrible disease.
Lord Wills
My Lords, I, too, thank my noble friend Lord Touhig for securing this debate. My mother lived with dementia for many years and in the early stages suffered greatly from it. What she went through in the early 1990s was depressingly instructive about the state of dementia care at that time in the London suburb where she lived. My mother was diagnosed in 1993, but that diagnosis took place only after my sister and I ignored the advice of our mother’s GP, who said there was no point in a diagnosis as nothing could be done for our mother if her increasing memory loss and confusion turned out to be the result of dementia. When the diagnosis was confirmed and we asked the GP for help, the GP who had cared for my mother and looked after our family for 25 years, she said that she was very sorry but there was nothing that could be done medically and she could not help my mother any further.
No support was offered to us by the local NHS or the local authority. We were on our own while my mother was rapidly deteriorating, bewildered and panicked by what was happening to her. My sister and I, with six young children between us, could not care for her in our homes, so we looked for a care home for her, but we could not find anywhere that we felt would provide anything like a real home for her. So we searched for carers to look after her in her own home. We were untypically fortunate enough to be able to do that, and we went through one carer a week for six months, as we could find nobody able and willing to take on the complex task of caring for someone suffering from dementia. Finally, when we had really begun to despair, through some good luck, we found a caring woman who looked after my mother wonderfully for the last four years of her life and helped make those years, for the most part, happy and peaceful.
Finding a carer was not the end of the problems that we faced. As my mother’s general state of health declined, she spent more and more time in hospital, and at one point in 1997, she was having to be fed through a tube. The consultant then insisted that she no longer had any quality of life and that the tube should be removed and she should be allowed to die. My sister and I disagreed and the consultant then tried to bully us—and I use that verb advisedly—into following his advice, telling us that we were being selfish and that the bed was needed for a patient who would benefit from it more. The pressure he exerted on a daily basis was intense and caused us great anxiety and distress, but we still resisted and, in the end, we were able to find a hospital that took a different approach and we moved our mother there. Through its loving care, my mother recovered, the tube was removed without her dying as a result and she was eventually discharged and went home where she lived for a further nine months, mostly happy and peaceful.
I have told this personal story at some length because it illustrates the state of dementia care at that time in that outer London suburb and is typical of the experience of so many people, many of whom are unfortunately unable to care for their relatives in the way that we were able to care for our mother. It typifies the experience that so many people living with dementia and their carers went through at that time. There was no empathy with the patient, no support for relatives and carers and a pervasive inadequacy of care.
Twenty years ago, I assumed that was the way things were and had to be, but in 1997 I was elected as the MP for North Swindon and I found that in Swindon, thanks to the imaginative work of Dr Roger Bullock and his colleagues, dementia care was immeasurably better than that received by my mother. There was respect and dignity in the way care was delivered, there was an underpinning belief that those suffering from dementia could still enjoy a good quality of life, and there was dedication to providing therapies to that end, all of which had been notably absent from the care on offer to my mother.
I agree with the noble Baroness, Lady Barker, that over the past 10 years, the practice in Swindon has become more typical and the neglect and indifference experienced by my mother less so. There has been real progress and there is better understanding of the disease. The national dementia strategy launched by the previous Government in 2009 was a landmark, and I hope there are no members of the medical profession today who still believe that those suffering from dementia cannot enjoy a reasonable quality of life. I agree with the noble Baroness, Lady Barker, that the Prime Minister’s Challenge on Dementia, which was published three months ago, is most welcome. It sets out some of the progress that has been made and there is a commendable determination to go, as the Prime Minister puts it, further and faster. I am concerned, however, about the obstacles that remain in the way of such progress. It is depressing, for example, that the Alzheimer’s Society, which does such invaluable work in this area and for whose support I shall always be grateful, found in 2009 that there was an unacceptable variation in the care of people with dementia on hospital wards, as my noble friend Lord Touhig has just outlined. There are still no national eligibility criteria for access to care and there should be. As my noble friend has pointed out, the difference between the highest spending local authority at Tower Hamlets is five times that of the lowest spending one in Cornwall. This sort of variation is neither fair nor justifiable.
Moreover, as my noble friend Lord Touhig has said, the most pressing need is to sort out adequate funding for social care. As the population ages, the number of people suffering from dementia increases. There are 800,000 today and that is forecast to rise by 25 per cent in the next 10 years alone. There are at least 600,000 carers today and that number is almost certainly an underestimate. These figures are never accurate and they are almost certainly a significant underestimate. That number is bound to rise, too. Because they receive too little support, people with dementia are admitted earlier than they need to be into long-term care and into hospital when adequate support in the community might have rendered that unnecessary. This is a wasteful, inefficient and above all unfair system.
There is also the continuing refusal of the Government to extend the protections of the Human Rights Act to all those in care homes. It is perhaps those with dementia who are most in need of such protections and the application of those fundamental human rights principles of dignity and respect. We have debated this issue recently in your Lordships’ House and the Minister was adamant in his refusal even to contemplate the extension of such protections. I still hope he may think again, if not today, at some point in the not-too-distant future.
Finally, I want to address the issue of innovation, which is so important in all issues to do with health care but particularly so in this area of health and social care where our understanding of this disease is growing exponentially. We have to listen to and learn from the experience of those who are living with it and their carers. I pay tribute to the Department of Health because I think it is taking some worthwhile initiatives to foster such innovation, but significant problems remain. For innovation to flourish, two things are required: first, empowerment of the frontline; and, secondly, the ability to roll out best practice so that everywhere in the country can benefit from it.
Ten years ago I was so impressed by the quality of dementia care I found in Swindon that I wanted to help develop it into a model that could be replicated across the country quickly and easily. So in 2002 and 2003 I worked intensively with all the relevant local agencies, in the NHS and the local authority and with local carers, to develop new and better mechanisms. The innovative proposal that emerged from that process offered choices for different care packages to sufferers and carers. It offered integrated care and a unique role for the voluntary sector, all of which successive Governments and professional bodies and the All-Party Parliamentary Group on Dementia have said are important.
This proposal required no extra funding. That meant, however, that local managers would be required to be highly efficient in their management of resources and they were concerned that this new challenge might affect their ability to meet all the targets that the Department of Health then required them to meet. So they needed some assurance that, if they were to embark on this enterprising initiative, they would not be penalised by the Department of Health for missing any other targets as a result.
This was a difficult issue, especially as the then Government were so driven by targets. As this was an important initiative, however, formulated not by an MP but by outstanding frontline professionals and patients and carers, I would have expected at least a dialogue about it. I wrote several letters to two successive Health Secretaries and I never received even the courtesy of a substantive reply. It was not that the idea was rejected; Ministers refused even to discuss it. Even their Special Advisers saw no point in discussing it.
I should say that the noble Lord, Lord Adonis, an adornment to your Lordships’ House, then in the Prime Minister's Policy Unit, was enthusiastically supportive but sadly that counted for nothing in the face of an indifference from the Department of Health which stemmed, as far as I have been able to work out, from the fact that this idea did not originate in the Department of Health.
I understand that the Government’s reforms will relax the sort of control from the centre that stifled the Swindon initiative, but maximising the benefits of self-directed support of the sort that that initiative envisaged requires an adequate infrastructure of information and services to support patients and carers in their choices. Ministers say that they want personal budgets to be the norm by 2013. That could produce some of the same outcomes that the Swindon initiative envisaged and which research by the Mental Health Foundation has shown are valued by carers and users. However, these desirable outcomes can be secured only if there is adequate infrastructure in place.
At a time when so much control is being passed from the centre to local agencies, and local authority and NHS budgets are under such pressure, is the Minister confident that such infrastructure will be adequate everywhere across the country—not just in the places of excellence, such as Swindon, but everywhere? Can he be confident that there will not be the same unfair, uneven provision from area to area that has characterised dementia care in the past and about which my noble friend Lord Touhig spoke so eloquently? It is increasingly accepted that, nationally, dementia care has been unacceptably neglected for far too long and that, locally, provision has been far too uneven. I hope the Minister can demonstrate real commitment to going, in the Prime Minister’s words, “further and faster”, not simply by saying it—which I am sure he will, with his characteristic grace and eloquence—but by demonstrating that in future there will be the quality of care that all those with dementia and all those caring for them deserve, and that it will be available everywhere in the country.
Baroness Greengross
My Lords, I start with three lots of congratulations. First, I congratulate the noble Lord, Lord Touhig, on securing this debate, which is of the utmost importance, and on speaking so eloquently, as did the other noble Lords who have spoken. Secondly, I congratulate the previous Government on introducing the dementia strategy and on the research summit, which I was privileged to co-chair. At the summit, important plans were laid, which could lead to a lot of change. Thirdly, I congratulate the Prime Minister. I was in the hall when he spoke and heard his speech. I have never heard him speak as well as he did on the dementia challenge. He is obviously very committed to this, as am I—I am passionate about it—and it was wonderful to hear what he said.
What has changed is that we are having a debate on dementia when people are not afraid to mention it. It is, as the Prime Minister said, as things were with cancer a long time ago and later were with AIDS. We can now talk about dementia. People know that it is absolutely essential to get things going and changing with regard to dementia. We must implement the action. The Government are committed to what the previous Government were committed to. We have all-party agreement that this is of the utmost urgency. We must get this right now.
What we face is largely due to recent medical success. We are now able to control or get rid of many of the acute illnesses that used to take people away from us, particularly cancer, heart disease and so on. We have had wonderful success but must now face, in effect, an enormous crisis, which is mounting not just in this country but across the world. It is on a par with climate change and it is of the utmost urgency that we get this right. We have to get more money into research and care, we must have staff who can do the caring, and families must be helped with the caring that they need to do. There is an enormous amount that needs to be done. The fear of people in this country is now not nearly as much about cancer as it is about dementia. As the noble Lord said, one in three of us will die from it and the costs are immense. If we get things right, we can reduce those costs.
The all-party group has 70 Members from both Houses and the wonderful thing is that they come to the meetings. I chair three other all-party groups and am a member of others. People do not come—they are too busy doing other things—but the group on dementia is very well attended. We have had some marvellous results from the inquiries that we have carried out on some of the subjects mentioned by the noble Baroness, Lady Barker, such as early diagnosis, anti-psychotic drugs and staying too long in hospital if you have dementia. That last is totally inappropriate, both for the person with dementia who goes in with a broken arm or a fractured femur but also for all the other patients who cannot sleep, rest or get better. It is appalling. To be blunt, we know that 20% of our acute hospitals now need converting into primary-care-led hospitals where the sort of treatment from which people with dementia and others with chronic diseases could benefit is introduced. It is quite difficult to persuade Members of the other place that they will be re-elected if they join forces in changing the hospitals in their local constituencies. However, that is what needs to be done if we are to meet the need of the fast-growing numbers of people who suffer from one of the dementias.
We also know that early diagnosis is essential. As the noble Baroness, Lady Barker, said, there are things that can be done. There is some hope now. Early interventions into the neural networks can achieve change. It is not far off that we will actually be able to do something about dementia, not just helping people to live better but moving towards a cure. We must all get together to get the research under way and properly funded, globally as well as nationally, and all benefit from it. It is essential that early intervention in neural networks is pursued.
Much has been said about the need for better hospital care for people who do go into hospital, and about better care in the community, in which I have been very much involved, looking at the human rights of people who need care and support in their own home. I will not joint the debate with the Minister about where human rights are applied, but I will say that human rights are really important as a training tool, where you start with the person and look at respect, dignity, the right to have some social interaction with others and the right to family life. That means that you do not separate husband and wife if they go into a care home. The care worker has to spend more than 15 minutes with the patient, because you cannot clean them up, give them a meal, arrange their day, get things ready, look after them a litte and have a chat in 15 minutes. We have to change the rules and standards of care in people’s homes. If we look at those issues as an infringement of human rights, it helps us to train people to get it right. I do not blame the providers of care in people’s homes. Many of them are struggling to make ends meet, too. We need a better system of funding for that. We need local authorities to come together, as some are now doing, so that those people who have to do everything in 15 minutes and then travel without being compensated for the travel or time of travel will not have to do so. At least several boroughs or local authorities are getting together to minimise the risk of that happening. So things can be done which do not cost a great deal.
We have to get cost-effective care. We have to look at the standards of care and the training of staff. We also have to look at the status of staff. Care work, work with people in their own homes or care homes, is low status and very low paid. Why would they continue to do that? They are very committed or they would not have got into it in the first place. In fact, if you go and work on the Tesco cash till, you get shares in the company, you have mates to talk to, you have regular hours and, when you go home, you know that your work is finished. That does not happen if you are caring for people with dementia. It does not happen if you are caring for vulnerable people anywhere. This is why our staff leave and take up other jobs—they are under pressure. We really must get the care regime right.
Moreover, we must make sure that “integration” really means something, because if we do not join up our services and include housing and care, both health and social care—and we have an opportunity to do it—and if we do not get it right, we will be letting down some of the most vulnerable people in society. The role of health and well-being boards and the commissioning groups are critical to getting this right. We can, in fact, do it now. If we also look at annual budgets of local authorities and make sure they do not continue to be threatened with the loss of their central government grant, we can begin to get some preventive work introduced locally as well. It is a disgrace that we can only look after people when they are in a critical condition. If I were a director of adult social services, that is what I would do—we would all do it—and that does not help people to remain fit and well for as long as they possibly can.
We can and must do something about dementia. We have all-party agreement on the urgency of this, and on the need for change in our attitudes and in our services, and in the integration of care for those with a terminal disease, which does not get treated as a whole at the moment. If we do not get agreement and act now, we cannot call ourselves a reasonably compassionate society.
Baroness Pitkeathley
My Lords, I thank my noble friend Lord Touhig for securing this debate and for introducing it so passionately. In your Lordships’ House, we often talk about the ageing of society. People are living longer—a lot longer—and this is a subject for rejoicing and a tribute to developments in society and health provision. However, as we have heard, one of the other consequences of this development is undoubtedly the increase in dementia. We are all aware of the figures and I will not repeat them. Although there have been some welcome developments in recent years, not least as a result of the publication of the dementia strategy and, latterly, the Prime Minister’s commitment, there is still a very long way to go. Most people with dementia and their carers are not living well.
Although we have made progress, we still have a lack of awareness. Dementia is not something we really want to discuss, still less plan for within our families. I always remember when I was leading the carers’ movement that we managed to get a dementia storyline placed in one of the leading soap operas. However, it did not last long because the issue of incontinence might have had to be faced and the producers felt that the viewers did not want to know about having to wash soiled sheets.
There are also great difficulties in diagnosis. Let us not forget that up to 40% of acute hospital beds are occupied by dementia patients, but of that number as many as 80% have their condition diagnosed after they have been admitted. They are, therefore, being nursed and treated by non-specialised staff who may have little or no experience of the condition and of whom it is unfair to ask the skills and competences which such patients need.
It may be that GPs are reluctant to diagnose dementia because, as the noble Lord, Lord Wills, has reminded us, they believe there is no cure or because they do not want to depress either the patient or his or her relatives. However, without proper diagnosis, there is no hope at all of putting patients and their families in touch with the services they badly need. We should not forget either that the number of people with dementia that each individual GP sees during their career is relatively few and we should not expect them, therefore, to be an expert in diagnosis. What we can and should expect is that they are willing to make referrals to experts who can make a diagnosis. Talk to the family of any dementia sufferer and they will almost invariably tell you a long and distressing tale of how long and how much persistence it took to get a proper diagnosis.
The third thing is the lack of support. Dementia can be coped with but support services are vital and they are in short supply, and I am afraid they are getting shorter. Caring services are in crisis due to lack of funding. Talk to anyone engaged at the sharp end and the story is the same. Fewer and fewer older people, including those with dementia, qualify for local authority support, and many services provided by the community and voluntary sectors are disappearing. Those services especially under threat or gone already include those aimed at preventing those with low-level needs from reaching a crisis situation.
Let me tell your Lordships about Raymond, who is 85 and cares for his wife, Margaret. He says that Margaret,
“has been diagnosed with dementia. My caring changes from day to day and week to week. You are living on a knife edge—you don’t know what the next hour or day will bring … I have a nurse who comes to get”,
Margaret,
“up at 7.30 in the morning and then puts her to bed at 7.30 in the evening”,
but her visits are now only 15 minutes long—and Raymond has been told that they have to be cut down to nine minutes in the next year. Margaret,
“goes to a care home from 9.30 until 3 in the afternoon”,
every Wednesday,
“which is a great help. They have games and entertainment. I can get down to my jobs while”,
Margaret is away. It used to be Wednesday and Thursday, but it has been cut down to one day a week. He goes on to say:
“Caring is very tiring. I try to cope to the best of my ability but I find I can’t take it in my stride. Life is very stressful, especially the practical work. I prepare meals and do the housework … I pay someone to sit in with”,
Margaret, once a week,
“while I go out … I go to a carers’ meeting on a Friday. It’s like opening another door. I can get back to normal. The tension goes away and my head clears. We talk among ourselves and there is a pleasant atmosphere. We all have a tale to tell. I find out how other carers overcome their problems. It’s an escape valve. You are with your own kind—people who know what you are experiencing. Without the day centre and the carers’ group I couldn’t manage … I don’t know what I would do”.
Although Raymond is 85, he does not want to give up caring for his wife. However, unless he has what he calls his escape valve, what will happen to him? I have to tell your Lordships that the day centre provision is under threat and the carers’ group, which was set up by a local authority worker, is now run by carer volunteers.
The noble Lord, Lord Touhig, reminded us how important it is to support the families who provide the bulk of care for dementia sufferers. As I often remind your Lordships, they are saving the nation £119 billion a year, so it is in all our economic interests to keep them in a caring role. But it is also important for the future because we will need many more carers. If they are not also going to become a drain on our economy in their old age, we have to support them now and enable them to stay in paid work as long as they can. The recent report published for Carers Week, In Sickness and in Health, tells a very distressing story about the health of carers as a direct result of their caring responsibilities. No fewer than 87% of them said that caring had a negative impact on their mental health and 83% on their physical health.
Carers and the people they care for already pay for services. If they are not eligible for social services or their income is above a threshold, they have to pay, which can range from domestic assistants to care workers. Services can be arranged with the local authority or trust, and others through private companies. This is often the cause of financial distress for carers. With the introduction of personal independence payments and changes to employment and support allowance, this may lead to substantial numbers of people losing benefits, which may mean that the person being cared for can no longer purchase the service. That means that carers will have to find alternative ways in which to pay for a service by dipping into their savings, getting into debt or simply going without.
In the current economic climate, there are concerns that an already struggling system is going to be further hit. Cuts to services will only make matters worse. For some carers, the ultimate impact will be giving up caring themselves because their health has deteriorated so much that they can no longer do it. That comes at a significant cost, as the person they care for will need to be admitted to residential care. For others, they are storing up serious problems for their future. Who will be there to provide the care in their place, if carers can no longer carry on?
I have three questions for the Minister, who I know is very aware of carers’ problems. Indeed, I was most grateful to him for attending a carers event that I hosted last week and for taking time from his very busy schedule to speak to carers and hear their problems. I appreciate that and know that he has always been concerned about this issue. Let me put the three questions to him. When will the Government act on the issue of sustainable funding for social care? The reform of the law on care is very welcome and I understand that we will hear about that shortly in the White Paper but we have to address properly the funding issues. How can we ensure that there is ongoing support for carers, including giving them a break—the kind of break that Raymond has just once a week that enables him to keep going? We heard rumours at one point from one of the Ministers that the Government were planning to enable GPs to prescribe respite care for carers. Is there any truth in that? On the subject of general practitioners, how in the new structure of the NHS do the Government plan to monitor the performance of GPs with regard to carers, since they are so important for them as a first port of call?
Baroness Wheeler
My Lords, this has been a comprehensive and authoritative debate on one of the major health and care challenges facing us today: namely, how we provide treatment, care and support for people suffering from dementia and ensure that their families, carers and the staff in hospitals, care homes and those who come to the patient’s own home can help them have the best quality of life and care. As one would expect, many of the key concerns and questions on improving research, diagnosis, understanding, services and support have been ably put by noble Lords during the debate. I will not repeat those. I look forward to the Minister’s response.
Of course, I also pay tribute to my noble friend Lord Touhig for securing this debate and for his excellent opening speech, setting out the context, the stark facts, the progress and developments since the national dementia strategy was launched by the Labour Government in 2009, and the challenges that we still face. Most importantly, I appreciated his reference to carers of people with dementia because they are so important in the debate—whether they have 24-hour caring responsibility in their homes, are family members supporting a dementia sufferer or are supporting their loved ones in residential care.
My noble friend Lady Pitkeathley also spoke passionately about carers, as you would expect. Ensuring that the everyday experience of carers is heard in debates such as this is vitally important, and the House is better informed for it. As a trustee of our local carer support group in Elmbridge, Surrey, I know that about 70 per cent of carers we support locally are caring for somebody with dementia. The dementia ranges from people experiencing the early disturbing signs of the onset of dementia, who, with their families, are wondering what the future will hold and how they will be able to cope, through to those in the severe advance stages, still cared for at home or in residential care, either with respite or permanent care.
Speaking to just a small number of these carers, two things are particularly striking—apart from the love and dedication that it takes to cope and carry on. First, the carer never stops feeling responsible, even when the husband or relative has had to go into hospital or residential care. Secondly, it is striking how much better we need to become at understanding the range of care and support that is needed, and at providing flexible community personal support and day and residential care that treats people with dementia with dignity and helps them maintain their quality of life.
I will quote from one carer whose husband with dementia is in residential care because she could no longer cope with him at home. She said:
“I had him home this weekend, which was nice but he was very distressed when I took him back this morning because he clearly didn’t want to be there. It makes me feel so guilty and sad, because when he is with me he is full of smiles and hugs, and I feel I am betraying him by taking him back. He has become unsettled generally because one of the residents in his wing has severe dementia and shouts and swears all day long. It is having a negative effect on my husband and the staff, but when I raise my concern with the home manager, he makes it clear that there is nothing he can do”.
Why this care manager feels unable to take action is a complex mix of failing to understand the spectrum of care that is needed and failing to respect the individual’s needs and the impact their behaviour has on other people with dementia, as well as on their carers and families. It is also often about poor assessment of the patient’s needs, lack of resources, inadequate training and the low pay of staff. As Carers UK has stressed, carers often report challenges in finding appropriate services with the necessary expertise to provide the right care, environment and support—a problem faced by my noble friend Lord Wills, as he explained.
This failure to find adequate care means that it will be more difficult for families to accept practical help or take a respite break, as they do not have confidence in the quality and appropriateness of the care. Also, as evidence to the Dignity in Care Commission set up by Age UK, the NHS Confederation and the Local Government Association has shown, poor or neglectful care, even for just a few days, can have a devastating effect. Locally, I was told of a care home that billed itself as having a “specialist” dementia ward. However, the reality of the care it provided—or did not provide in this case—meant that an elderly lady admitted for respite care to give her husband a break deteriorated so badly during her short stay that she was unable to return home because she could no longer get to the toilet on her own or feed herself. She is now in permanent residential care. The respite experience pushed the husband over the edge and he was no longer able to cope.
As I always stress, there is of course good-quality care and best practice in day care, assessment centres and residential homes across the country, and the huge challenge, as usual, is to raise standards in the homes where there is poor care to their level. I pay tribute to key improvement tools such as the Age UK’s initiative, My Home Life, which promotes quality in care homes for older people. It is an exemplar programme that helps staff to optimise the quality of care in their homes and has the active support of the Relatives and Residents Association and the national provider organisations representing care homes across the UK.
For dementia, the need for more research, early diagnosis and the importance of providing integrated health and social care for people to improve services are key elements, as noble Lords have stressed. The Alzheimer’s Society’s estimate is that two-thirds of people living with dementia live in their own homes, and a third live in care homes. The reality, however, as we on these Benches have repeatedly stressed, is that current inadequacies and failures of the system will not be addressed without tackling the crisis in the funding of social care. As all key stakeholders in the voluntary, public and independent provider sectors, as well as care professionals and service users, have stressed, a full package of reforms that address legal, current and long-term funding is needed.
How can local authorities that are currently having to cut £1 billion from social care budgets provide adequate or improved community care support, not just for people with dementia but for people with other lifelong conditions such as stroke damage or diabetes, and for their carers and families? I understand that new figures revealed by the Alzheimer’s Society and MHP Health Mandate also reveal an alarming 12% increase in the number of emergency hospital admissions for people with dementia since 2006. Is this not evidence that the community services that are needed to help people live at home are woefully inadequate to meet current or future demand?
I ask the Minister if he can update the House on when spring will finally arrive and the social care White Paper will be published. What will it cover? We know it will focus on the reform of social care law, which is very important, but does he not agree that making changes to the legal rights and entitlements of elderly and disabled people without dealing with the issue of how the services are to be funded now and in the future will only create more expectation and demand that cannot be met?
On the question of improving early diagnosis, can the Minister update the House on what progress has been made by local NHS organisations in developing plans to improve diagnostic rates, as set out in the Prime Minister’s dementia challenge? The challenge also made £54 million available through the dementia Commissioning for Quality and Innovation—CQUIN—programme to hospitals offering dementia risk assessments to all over-75s admitted to their care. Can the Minister update the House on how many hospitals have received payments under this scheme and how many hospitals have offered such risk assessments to all over-75s?
On the issue of keeping track of how the national dementia strategy is being implemented, I understand from the Mental Health Foundation that Andrew Lansley at last year’s Dementia Action Alliance event promised that there would be an annual report on progress. This would be a really important lever to help drive through improvements. Can the Minister advise us on when the first annual report will be published?
Finally, as regards the White Paper, can I press the Minister, when he updates us, to advise us on whether it will set out a clear timetable for addressing the recommendations of the Dilnot report, as well as a full government commitment to the cross-party talks on this, and to standing by the Prime Minister’s pledge to deal with social care funding in this Parliament? As he knows, the Minister has promised the House that the Government will not shy away from tackling this issue. I have pressed him on this matter on a number of occasions, and I must say that his responses have become increasingly expansive as we have gone on.
On 11 June, he assured me that the Government are,
“absolutely committed to introducing legislation at the earliest opportunity in this Parliament to establish a sustainable legal framework for adult social care”.—[Official Report, 11/6/12; col. 1137-8.]
That much we of course knew by then but, on 18 June, the Minister assured me that the Government’s,
“aim has been and remains to legislate in this Parliament to create a fairer, more just and better funding system for social care”.—[Official Report, 18/6/12; col. 1542.]
So today I am hoping that he will be able to go the extra mile and commit the Government to producing a timetable in the very near future for consultation on the Dilnot recommendations, and for implementation of long-term funding proposals in this Parliament.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
My Lords, I begin by congratulating the noble Lord, Lord Touhig, on securing this debate and thank him for his compelling speech. As all noble Lords have emphasised, dementia is one of the most important health and social care issues that we face as a society. The statistics are staggering. The 670,000 people with dementia in England will double over the next 30 years, and the current £19 billion cost will inevitably spiral.
Dementia affects not only health and social care but all of society, and the speeches today have brought that dimension graphically to life. We need to be better prepared. Dementia is a priority for this Government, and we are working to ensure that it becomes a priority for every part of our society—communities, banks, supermarkets and transport. All need to become dementia-aware and dementia-friendly. That is why, on 26 March, the Prime Minister set out the Government’s challenge on dementia, to go further and faster in implementing the national dementia strategy in three key areas: driving improvements in health and care, creating dementia-friendly communities and improving research into dementia.
I was grateful to my noble friend Lady Barker for what she said about the challenge. We do mean business in this important area. Nationally, three champion groups are driving delivery. The first meetings of the three groups have already taken place and work is well under way to make progress on the challenge. The champion groups will report their progress in September 2012 and again in March 2013.
People with dementia, their families and carers have told us what is important to them and what will help them to live well with dementia. They want to receive an early diagnosis and timely, good-quality information that will help them to make informed choices about their care. I listened with dismay to the story the noble Lord, Lord Wills, told us about his own mother in that context. They want the treatment and support they receive to be the best for their dementia and their life, regardless of whether they are cared for at home, in hospital or in a care home. They want the care they receive at the end of their life to be compassionate and appropriate and to support their exercise of choice.
Early identification of those who care for people with dementia is crucial so that they can be directed to the information, advice and support that will help them in their caring role. The NHS operating framework requires the NHS to work more closely than ever before with local carers’ organisations and councils to agree plans, pool their resources and make sure that carers get the support and breaks they deserve.
However, there are other reasons why change is so important. The challenging economic context, as noble Lords have emphasised, makes it even more important for new and more efficient models of service delivery. That is why we have launched an innovation challenge prize of £1 million for NHS organisations to develop ideas for transforming dementia care. Through the dementia care and support compact, the social care sector is committing to leading initiatives to improve the quality of care for people with dementia. That includes work to ensure that people with dementia are clear about what they have a right to expect of care services.
The noble Lord, Lord Wills, asked about the funding for all this. The Government have already made increased funding available to the NHS and many of the aims of the challenge should deliver savings. For example, the CQUIN goal of improving the recognition of dementia in hospital should lead to people with dementia spending less time in hospital, and ensuring that people with dementia are diagnosed early should stop them going into crisis. The Prime Minister’s challenge is about the NHS and social care making better use of the resources already available to them.
The noble Lord, Lord Touhig, asked about the eligibility criteria for care. The imminent White Paper on care and support—I stress that it is imminent—will set out our plans to transform the care and support system for everyone, including people with dementia. The noble Baronesses, Lady Pitkeathley and Lady Wheeler, asked me for further and better particulars on our plans for publishing the White Paper and indeed for reforming the funding of social care. The care and support White Paper and the progress report on funding reform for social care will be published simultaneously and, I hope, very shortly. I believe that I can go no further than I did the other day in responding to the noble Baroness, Lady Wheeler, but I can reaffirm the Government’s intention to legislate on both funding reform and the reform of the law on social care as early as possible in this Parliament. Clearly, following the publication of the White Paper and the draft Bill that will go with it, we will wish to hear from all sides of the House and indeed from all sectors of the community about the direction of travel and the detail of our ideas.
The noble Baroness, Lady Pitkeathley, asked about the role of GPs. As part of the Prime Minister’s challenge, we are actively working with the royal colleges to identify how best to improve early diagnosis through awareness, education and training at GP level. Early and accurate diagnosis is, as the noble Baroness and others emphasised, very important in ensuring that people with dementia can access the support and information that everyone needs when they receive the dismaying news of this dreadful condition.
My noble friend Lady Barker spoke about adaptations for those with multiple disabilities. I agree with what she said. It is important that designers think about people with dementia when designing products for older people. The department provided funding to the Design Council to run a project to encourage design for people with dementia. There were 185 entries, which shows that designers take this seriously and that the design community is very definitely rising to the challenge.
The noble Lord, Lord Wills, spoke about the Swindon project and innovation. I can tell him that we very much want to see good, innovative practice spread out across the NHS and social care. That is why we have launched the innovation challenge prize for dementia, to which I referred. We are very much looking at innovation as part of the implementation of the Prime Minister’s challenge. Incidentally, the dementia challenge is to achieve a dramatic reduction in the proportion of people who have undiagnosed dementia, with evidence of a step-change in the diagnosis rate and a strong service response. The challenges in this and other areas will be open for a minimum of three years, which should encourage health communities and organisations to confirm their intention to apply for a prize.
The noble Lord, Lord Wills, also referred to human rights. We very much welcomed the publication of the report of the EHRC inquiry into human rights in home care for older people. The report found evidence of mixed practice. While we should be positive about those who deliver good-quality care services—and there are many—there is no excuse for bad practice. We believe that the report performed a valuable service by shining a light on the care and support provided in that most private of spaces—people’s own homes. We cannot tolerate poor quality in any of our care services. I completely agreed with what the noble Baroness, Lady Greengross, said about training. Care and support that respects human rights must be the foundation on which we build to make a reality of our vision of better health and well-being and better care for all. We will continue to work with the EHRC, the Care Quality Commission, local authorities and care providers to ensure that poor practice is rooted out.
The noble Baroness referred, quite rightly, to workforce issues and training. We know that two-thirds of people in care homes have dementia, so it is vital that the workforce is trained in dementia care. Indeed, 10 leading care home and home care providers have already signed the dementia care and support compact to which I referred, and we aim to have 50 organisations signed up by September this year. The compact sets out the organisation’s commitment to deliver high-quality, relationship-based care and support for people with dementia. I think that that statement of intent gets the process off to the right start.
The noble Baroness, Lady Pitkeathley, rightly reminded us of the vital contribution that carers make to society, a theme taken up, very perceptively, if I may say so, by the noble Baroness, Lady Wheeler. The Government have taken strong action to support carers. We set out our priorities in Recognised, Valued and Supported: Next Steps for the Carers Strategy, published in November 2010, and we are providing additional funding of £400 million to the NHS between 2011 and 2015 for carers’ breaks. As we set out in Innovation Health and Wealth, published last December, from April 2013 access to all CQUIN rewards will be dependent on commissioning support for carers in line with NICE and SCIE guidelines.
Furthermore, the 2012-13 NHS operating framework requires the NHS to work more closely than ever before with local carers’ organisations and councils to agree plans, pool their resources and make sure that carers get the support and break that they deserve. I very much hope and believe that that will have a positive effect on the thousands of carers of people with dementia in England.
Although dementia can be a crushing condition, we must not lose sight of the fact that people do live well with it. We need a profound shift in culture and behaviour if we are to reduce the stigma of dementia. All too often dementia is ignored, and the work of carers and other professionals goes unrecognised. Business and civic organisations are part of the solution. They can help to create dementia-friendly communities where people with dementia and their carers can remain and do the things that we all take for granted, such as travelling around and shopping. As so often, my noble friend Lady Barker was completely right in what she said on this theme. We need to create communities in which people are not ashamed of or embarrassed by dementia.
As we have a few minutes in hand, with the leave of the House I will continue a little longer. We need to create communities that show a high level of public awareness and understanding about dementia, communities where people with dementia and their carers are encouraged to seek help and where people know enough about dementia to be able to help someone with the condition. By 2015, there will be at least 20 places recognised as working towards being a dementia-friendly community. Places and organisations that meet the criteria being developed as part of the Prime Minister’s challenge will be awarded dementia-friendly status. I can say to my noble friend Lady Barker that, as part of the dementia-friendly communities strand of the challenge, we are working with banks to ensure that they and their staff understand the needs of people with dementia and that staff are dementia-aware.
The noble Baroness, Lady Greengross, mentioned an important part of the Prime Minister’s challenge, dementia research, spanning basic research through to living well with dementia and increasing capacity and capability across the entire research system. It commits the National Institute for Health Research, the Medical Research Council and the Economic and Social Research Council to increasing funding for research into dementia from £26.6 million in 2009-10 to an estimated £66.3 million in 2014-15.
Over the next three years, the NIHR will support the four new NIHR biomedical research units for dementia, projects resulting from the recent NIHR-themed call for research on dementia, and additional work depending on the volume of high-quality applications received. In addition to the increase in funding for dementia, the MRC will spend over £3 million to support the UK brain banks network. This connects all the UK brain banks for the benefit of donors, researchers and future patients. This money includes £500,000 a year to improve the process for donating brain tissue by meeting the costs of collection through the NHS. The ESRC is making £5 million of additional funding available to fund research into the prevention of dementia and interventions to maximise the quality of life for people with the condition.
There is much that the Government are doing and much more yet to be done. To address the challenges of dementia, we need a response not only from the NHS but from society as a whole.
Lord Wills
My Lords, as there is a little time—this is not my intervention—I want to place on record how enormously heartening I found the Minister’s response to the debate. I feel inspired by much of what he said and I want to put on record my thanks to him for his response.
My question is this: are there any milestones in place to measure progress in meeting the Prime Minister’s challenge and, if so, what are they?
Earl Howe
My Lords, if the noble Lord will allow me, I shall write to him on that. The answer, broadly, is yes, we want to see progress made by certain steps of time. However, time does not permit me to spell that out now.
There are already significant signs of progress up and down the country. The Prime Minister’s challenge is about mobilising not only the NHS and local authorities but all the resources that our communities have to offer. A great deal of good work is already going on and is beginning to lead to a steady increase in diagnosis rates, which is promising. The result of that will, of course, be that many more people will get the treatment and care that they need and that their loved ones deserve. Long may this continue.