Order. Before I call Jim Shannon to move the motion, I must explain that we are having technical difficulties. The debate is hugely over-subscribed—many people want to speak—so it is likely that after Jim Shannon has spoken I will impose a time limit. However, there is no connection between my clock and the clock on the wall, which is going to be a difficulty for speakers. When Jim Shannon has spoken, I will explain what we are going to do.
I beg to move,
That this House has considered dementia and Alzheimer’s disease.
I thank all Members who have very energetically turned out in large numbers to support this debate. I am going to keep my speech to 15 minutes to give everybody else a chance to participate. I thank the shadow Minister for being here, and it is good to see the Minister in her place. We always get a good response from her, so I look forward to that.
Yesterday, we had a digital debate in preparation for this debate, and I have got some stats to give hon. Members an idea of how it went. It was organised by Lucinda Blaser and the staff of my office. We reached almost 3 million Twitter accounts, and a total of 1,100 tweets were sent throughout the day. There was an enormous amount of interest outside this House in yesterday’s debate, and the same is true of today’s debate.
I want to speak about the issues that concern me. It is hard to find someone whose life has not been touched in some way by Alzheimer’s or dementia. People up and down the country—unfortunately including many in my constituency—are affected by those indiscriminate diseases. Alzheimer’s and dementia know no class, colour, creed or gender; they can affect any of us. It is extremely important that we have this opportunity in Westminster to discuss advances in ways of tackling the disease. This debate raises awareness and puts the issue of dementia and Alzheimer’s on the agenda for the whole of the United Kingdom. All Members will bring their own knowledge of this subject to the House. We will hear contributions from Members from across the whole of the United Kingdom of Great Britain and Northern Ireland.
According to the Alzheimer’s Society, our ageing population will increase the trends. In 2015, 720,000 of the 856,000 people known to have dementia were in England, 45,000 were in Wales, 70,000 were in Scotland and 21,000 were in my home nation of Northern Ireland. In my trust area, which includes Lisburn, North Down, Down and Ards, the level of dementia is 25% higher than that of England after age standardisations. We have a higher level of dementia and Alzheimer’s in my constituency than anywhere else in Northern Ireland.
I congratulate the hon. Gentleman on securing this absolutely vital debate. This is not just about the total number of cases of dementia that are now being registered; it is about the increase down the line. In my constituency, we are looking at an estimated increase of 30% over the next five years in reported dementia cases. Will the hon. Gentleman reflect on the increasing incidence of dementia?
The hon. Gentleman is absolutely on the button on this issue. Very quickly on the figures, because stats can sometimes overawe us, it is estimated that by 2025 1.1 million people will have dementia and Alzheimer’s, and by 2051 2.1 million people will have the diseases. The numbers are enormous.
I congratulate the hon. Gentleman on securing this debate on such an important topic. On the increase in numbers, does he agree that some vital work is being done on mitigating the symptoms of Alzheimer’s, not least in many care homes and residential homes in my constituency? Equally, we have to focus on palliative care for people with Alzheimer’s at the end of their life.
I was going to come to that issue. I thank the hon. Gentleman for that intervention. It is not just about the diagnosis of dementia and Alzheimer’s, but about the follow-up, the path of care and how we help the whole way through. I will touch on some of those things later in my speech.
We must not abandon or diminish our efforts to find a cure. We have to take into account the reality we face and carefully plan for the future, so that all those with dementia and Alzheimer’s can get the care and support they so desperately need. As the hon. Gentleman said, that is the issue we have to address.
We are talking about end-of-life support, but we have to take a practical approach. One of the charities in my constituency—Community Concern Erewash—has a project to dementia-proof houses in Erewash to help people in the early stages of dementia stay in their houses for longer. They are doing things such as labelling drawers and rooms, so that people know exactly know where they are and can navigate their house for longer. Does the hon. Gentleman agree that such practical measures will make a difference?
The hon. Lady is absolutely right. The simplest things can make a difference. It is about improving quality of life and letting people with dementia and Alzheimer’s have a life with their families.
I congratulate the hon. Gentleman on securing this debate. He makes a very important point, which is that we are concerned not only about those with the condition, but about their carers, of whom there are now 750,000. Does the hon. Gentleman agree—I have been talking to my local Alzheimer’s Society about this—that we have to ensure that we have information and provide access to support and networks so that carers do not feel isolated, as they often do?
I thank the hon. Gentleman for that contribution. In the digital debate yesterday, there was mention of the clusters for those caring for people with dementia. There are 82 across the UK mainland, including some in our area and in Scotland and Wales. Lots of things are happening, and we need to see them develop.
To be fair—I know the Minister will say this in her response—the Prime Minister made very good comments about the 2020 challenge on dementia, which contains some marvellous things that can pave the way forward. The simple things can really make a difference and change people’s lives easily.
I applaud the hon. Gentleman for securing this very important debate. He is talking about getting the simple things right. In the Medway towns, we have dementia cafés—one is located in Medway—where families and sufferers can be brought together to share their experiences and get the support they need in their local area, which is absolutely vital at that time.
I thank the hon. Gentleman for that point.
This is such an important debate, and it is really important that we air all of these issues. It is about the simple things in many cases, but it spreads across a wide network. One of the respite centre residents of Dementia Care—an excellent charity in my constituency—was recently admitted to hospital for a routine procedure but was not released from hospital until 3 am, which threw their entire programme for the next day. More carers were needed to get them back into a routine. Simple things make a huge difference to such people and those who care for them.
The hon. Lady speaks with knowledge. I thank her for that contribution.
There are ten key indicators of the quality of life of people with dementia: communication difficulties; relationships; environment and surroundings; physical health; a sense of humour; independence; a sense of personal identity; the ability to engage in activities and the opportunity to do so; difficulties with eating, drinking and swallowing; and, of course, their experience of stigma. All of those things are important.
I congratulate the hon. Gentleman on securing this debate. As he draws these strands together, there is one problem that we should focus on. Local authorities have many statutory responsibilities, but as a result of the significant cuts to their budgets, these areas—they are not statutory responsibilities but, as a number of colleagues identified, they play a huge role in enabling people to manage their condition, stay active for longer and provide respite for their carers—are being cut back, which will ultimately have a long-term cost for the health service.
Obviously, the right hon. Gentleman has a focus on the issue. We will throw that ball in the Minister’s direction and perhaps she will answer that as well.
Dignity and quality of life are far too easily taken for granted, but simple things are so often lost when someone is diagnosed with Alzheimer’s or dementia. To do what we can to facilitate a better quality of life for those who through no fault of their own are so diagnosed is what I hope we came to this House to do—to make a difference. Yesterday, it was deeply encouraging to see from the digital debate how many bodies are active in the field of dementia and Alzheimer’s.
There are many issues to consider as part of dementia awareness, although one that is often overlooked is sight. I met an optician from Newtownards last week, and what I learned prompted me to mention the subject now. All too often, it is assumed that someone with dementia will gain no benefit from a sight test and vision correction, simply because they have a cognitive impairment or might not work, drive or read. Good eye health and good vision, however, can play an important role in supporting the wellbeing of a person living with dementia. Again, I ask the Minister for a better strategy. I know that opticians’ organisations would be happy to assist. Good vision can greatly increase a person with dementia’s sense of independence, allowing them to continue to participate in daily tasks and activities and in obtaining a good quality of life.
Does the hon. Gentleman intend to cover why there is an increase in dementia? Many of us are dementia friends, but why is there an increase in this awful illness? Do we know?
I would need to the wisdom of Solomon to answer that question. Personally, I do not know; perhaps it is society or how we live. People are living longer and, by the very nature of living longer, we have such problems. There are probably a number of issues involved and reasons for that. However, early diagnosis, follow-on care and end-of-life care are fundamental.
There is a need to raise awareness among people with dementia and their carers about the disruptions to vision and eye health that might be concurrent with or arise from dementia. We therefore need to emphasise the importance of regular sight tests and eye examinations.
The Mental Health Charter for Sport and Recreation has done some interesting and outside-the-box things for people living with dementia. Along with partners, they have delivered a dementia-friendly swimming initiative, which is steadily expanding across the country. That is an absolutely fantastic way to help improve quality of life. It is amazing how not-for-profits are putting in the hard graft to make heart-warming things such as that happen, often with no funding. It is amazing what a group of dedicated, selfless individuals can do, as has been mentioned.
I thank the hon. Gentleman for giving way and I apologise for missing his opening remarks. Will he take the opportunity to commend the many local communities that have sought dementia-friendly status, meaning that a visit to the shop is not too embarrassing or a stigmatising event for sufferers or their carers?
The hon. Gentleman has clearly hit on a very salient point.
In relation to the science and medical sectors, I ask the Minister about the significant spend on and moneys set aside for the investigation into how dementia happens, which the hon. Member for Beckenham (Bob Stewart) asked about in his intervention. That money will help to find a cure—and we need to find a cure, because we have to give hope. To give hope, we have to have medical interventions and the investigations leading to them.
The hon. Gentleman is talking about a cure. Recently, I visited the department of human genetics at the University of Nottingham, which is working hard on a genomics project to identify the change in the genes that might cause dementia and Alzheimer’s, so there is light at the end of the tunnel, although it is a long way off. Great work is being carried out, however, not only in Nottingham, but in many places in the UK and throughout the world.
We have to encourage all medical advances.
The number of people living with the condition in the UK is revealed as more startling when we take into account the unsung heroes—the carers.
I congratulate the hon. Gentleman on obtaining this debate. He made an important point about the unsung heroes, the carers. Does he agree that often the people who provide the care in the home rely on outside visits, but those are short-term visits, which are not really the answer to support the carer or the person suffering from Alzheimer’s disease or dementia? More work on policy development and resources needs to be invested in by Government in the vital area of caring.
I thank the hon. Lady for a valuable intervention.
Carers UK estimates that, of the 6.5 million carers in the UK, 670,000 people care for friends or relatives with dementia. It is estimated that the NHS saves some £11.6 billion each year because of those unsung heroes; their contribution as volunteer carers is very valuable. Carers may end up providing more than 100 hours of care per week, and all too often the outside world is completely oblivious to their efforts—even those who know the carers might be oblivious, because they do not know what is happening. Anyone who has lived with someone with dementia or Alzheimer’s, or knows a person who does, knows the problems. People with dementia can often unknowingly become agitated, even violent, and night-time wandering and shouting can have a serious impact on carers’ sleep patterns, let alone sufferers’.
I congratulate the hon. Gentleman on securing this debate. Talking about awareness and carers, does he agree with me that a large number of carers might not even be aware of, but need to be taught, how to help and look after? We need an awareness campaign.
We do need an awareness campaign—perhaps it starts with this debate today, working its way through to our constituencies and the people we represent.
Too often, carers are left to suffer in silence. The existing services on offer are not publicised enough and are not up to standard. The main social security benefit available to carers is the carer’s allowance. Those providing more than 35 hours of care a week are entitled to only £62.10. Further to that, carers may incur sanctions on how much they can earn on top of the allowance. Dementia carers save the NHS more than £11 billion every year, but they get only £62.10 per week for giving up their lives for someone less fortunate. I know the Minister’s Department is not responsible for that but, with respect, it is not a good reflection on Government given the hours spent by carers. Times are tough for the public finances, but it must be highly insulting to carers for them to see some of the things happening in the news when they are getting only £62.10 a week.
Familiarity has been mentioned, and that is an important role for carers to play. My own grandmother deteriorated every time she was in hospital, because of the lack of familiarity. Does my hon. Friend support John’s Campaign, which encourages the provision of more time and greater support for carers in the hospital setting, as well as greater flexibility about the hours they can be there with their loved ones?
My hon. Friend makes a salient point. He always hits on the issues that we should all be aware of.
I welcome the fact that the Government are developing a new carers strategy. I can only hope that this debate will raise awareness of the need for urgent and large-scale reform of the way in which the Government treat carers. I welcome the dementia-friendly communities strategy and the clusters of dementia groups. In my constituency we have a number of homes where patients with dementia and Alzheimer’s are looked after directly. I also have a dementia friends group who come together in the Church of Ireland church in Newtownards. They bring together all the people of Ards and North Down who want to participate. They give them art, they give them music and they give them a chance to interact, and it is marvellous what happens.
Briefly, I want to mention some of the things that happen in Northern Ireland. The Northern Ireland dementia strategy has a list of achievements to its credit in recent times, which I bring before the House to help the debate: £6.25 million in the Dementia Together Northern Ireland project; the appointment of dementia champions—perhaps the Minister will give us some thoughts about dementia champions in the whole of the United Kingdom, because things are happening, but I would like to hear about them.
On dementia champions and dementia friends, will the hon. Gentleman join me in praising the wonderful work that is done by them, especially in providing sufferers with familiarity—the point made by the hon. Member for Belfast East (Gavin Robinson)? One of the ideas is to provide sufferers with things such as memory boxes to trigger the memory, which helps terrifically with this dreadful disease.
I thank the hon. Gentleman for his intervention.
I commend the hon. Gentleman for securing the debate. On Northern Ireland, he may be aware that the Joseph Rowntree Foundation supports the Dementia without Walls programme, and one place in which it has done something is in a city with walls—the Derry Engaging and Empowering Dementia project has included: work at the level of schools and everywhere to ensure that everyone is more aware of dementia; and Derry having the first dementia-friendly pantomime in Ireland last December, in the Millennium Forum.
I thank the hon. Gentleman for his intervention and for giving an example of some of the good things happening throughout the whole country.
I tabled an early-day motion some time ago to highlight what can happen in people’s homes, and I suggested issues such as smoking, drinking, diet, excessive weight, healthy weight and social interaction, which is so important. Many may enjoy a tipple or an alcoholic beverage, but for too long alcohol has been overlooked as a cause of dementia. The hon. Member for Beckenham asked what some of the causes are, and that is one of them. No one is saying to people to go cold turkey or to hang up their dancing shoes, but the facts are there and they need to be heard.
We have alcohol-related dementia, which is formally attributed to alcoholism, and conclusive evidence now shows that heavy drinking over a long period increases the chance not only of dementia in the long term but of early onset dementia. To illustrate that, Alcohol Concern has provided comparative data showing that the brains of men who drank more than four units of alcohol a day—approximately two or three drinks a day—over 10 years age at a higher rate than those of light or non-alcohol drinkers. The brains of men who regularly drank alcohol appeared between 1.5 and 5.7 years older than their healthier counterparts. Those are just some of the things we have got to address.
One other thing we have done in Northern Ireland is provide funding for dementia-specific nurses, new studies into treating dementia—seven studies are taking place in Northern Ireland—and we have clinical leads for research. That is what we need to do. I thank the Minister, the shadow Minister and right hon. and hon. Members for coming to participate in the debate. I hope that my comments and the interventions have helped to focus attention and that we can do a lot more in advancing the race against dementia and Alzheimer’s, supporting the carers better and furthering awareness of the potential causes.
Several hon. Members rose—
Order. Given the technical difficulties, the number of people who wish to speak and the fact that I intend to call the Front-Bench spokespeople at around 10.30 am, if my arithmetic is right, we are due to go over that time. I will put on a time limit of four minutes and not add time for interventions, because that gets too technically complicated. I hope that is clear. That will probably take us just over 10.30 am. The Clerk tells me that, to aid right hon. and hon. Members, a bell will be rung one minute before the end of their speech time limit.
I cannot wait to hear the bell! I congratulate the hon. Member for Strangford (Jim Shannon) on securing this important debate. We know that there are more than 800,000 people with dementia in the UK today and that by 2040 that number is expected to double. I did a bit more digging into my constituency and found that Aldridge-Brownhills is ranked 220th by age standard prevalence.
My constituents are concerned about this subject—they have written to me about it—and probably most of us in the Chamber have been affected through knowing someone who has or who has had it. We often wrongly associate it with age, but the reality is that more than 40,000 younger people—people under 65—currently live with the condition, so I hope that one result of this debate will be a recognition that it does not just come with age.
Research also shows that dementia costs the UK a staggering £23 billion a year, which is more than the cost of cancer, heart disease or stroke. It is equally concerning that the diagnosis rate has been historically low. That is why I welcome the Government’s objective and the work they are doing to be a world leader in fighting dementia and their commitment to improve diagnosis, care support and research. That must be welcomed. However, it is worth recognising that as vital research goes on, the condition does not go away. We must recognise dementia’s impact on families. It can be very difficult to look after someone who has dementia and, especially in the early stages before they are diagnosed, trying to understand what the problem is and how to help them.
As has been touched on, we also need to recognise that it can be difficult and distressing for those with dementia when they go into hospital. To be in a different environment, away from familiar surroundings, is hard at the best of times, but it is even more so for those with dementia. Time in hospital can have a negative effect on the health and wellbeing of people with dementia and, as has been highlighted, delays in discharge can also exacerbate problems.
We have talked about the role of carers—not just the paid carers, but the unpaid carers who are there 24/7, looking after their loved ones. They do not get any respite and they often have a hard time of it. [Interruption.] Thanks for the bell. A couple of years ago, I had the opportunity to do the “dementia friends” training session with the Alzheimer’s Society and to help to organise some training sessions. The one thing I took from those sessions is that all of us—even those who are not carers or do not know much about nursing and the care profession—can do some small, practical things that can make a big difference to people with dementia. In my constituency, we have a dementia-friendly café, and I am looking to set up a dementia friends session, so that we can pass on the word and encourage more people to get involved. I hope that others will do the same.
It is a pleasure to serve under your chairmanship, Mr Stringer. I congratulate the hon. Member for Strangford (Jim Shannon) on his excellent speech and on securing the debate.
In the north-east, there are an estimated 25,841 people living with dementia. In coastal constituencies such as mine, South Shields, the figures are higher than average due to large elderly populations. Over the coming years the figure is projected to rise locally and nationally, with more than a million people forecast to be living with dementia in the UK by 2021. I am sure the absence of any mention of the NHS or social care in the recent Budget was of little comfort to those who have loved ones living with dementia.
As the numbers of people in need of care and support rise, real action from the Government is lacking. Yes, we have the Prime Minister’s commitment to making England
“the best country in the World for dementia care,”
and we are told that research investment has doubled and policies for improving diagnosis rates are in place, and that there are a million dementia friends, but commitment, research and reliance on charities are no substitutes for the care and support that thousands of people with dementia need right now.
Anyone who has ever had to make the heart-wrenching, emotional decision to have a member of their family placed in a residential or care home, even for a short while, will know that good care, dignity and respect are the cornerstones of providing loved ones with the safety and security they once enjoyed in their own homes. I know about that from my own gran, who was one of the strongest and bravest people I ever knew. As she got older, this strong woman became physically frail and, worse still, her mental health deteriorated too. Gran had dementia and, after many stays in hospital and some painful discussions, our family decided that she needed to be admitted into a care home. She escaped from the first home and was found alone, shivering in a field. At the second home she seemed happy enough, but she suffered an injury through carelessness of staff. If my gran had had carers at home, she would probably have had only one or two visits a day, with all of her getting up, getting dressed, meal times and bed times dictated by the times her care company could come, not when was best for her.
The thing is, though, gran’s story is not unusual; because in an age of increased need and reducing budgets, respect, dignity and choice are always the first to go. They cost nothing on the balance sheet in the first place, yet they mean so much to the people receiving care. This view is supported by the Alzheimer’s Society, which has reported that more than half of carers felt that their loves ones were not treated with understanding and dignity in hospital.
At present, we have a crisis in adult social care and in the NHS. Local authorities predict a £4.3 billion gap in adult social care by 2020, and NHS England and the Nuffield Trust estimate that by 2021 the NHS funding gap could have grown to £30 billion a year. Residential and care home providers and organizations that provide home care say openly that they do not know how much longer they will manage, because they have realized what we all know: there is no real profit to be made in good quality care.
The average cost of a year’s dementia care is £32,250 per person. I have always known that if we are really going to care for people living with dementia and support their families, we need to formulate policy starting with them and their needs. That is the approach that I took when I was a local councillor, and I am proud today that building has actually begun on South Shields’s £9 million centre of excellence for older people, an integrated care services hub with a focus on dementia, which I worked tirelessly on before coming to this place. I know that I do not have all the answers, but I know that the Government need to be more inventive and creative, and to address the crisis right now.
I realise that Members often curl their lip when Conservative Members stand up to tell the Prime Minister how brilliant he is; but since he put dementia on the global agenda in 2012 the horizon has changed remarkably. Between 2012 and 2015 something like £60 million was pumped into research, and there are incredibly ambitious targets for the doubling by 2020 of dementia and Alzheimer’s research. That includes all sources—Government, private and charity.
The issue is all about capacity building; £300 million is now being pumped in, of which £150 million is earmarked for a dementia research institute and an international discovery fund of 130 million quid. However, we must face the fact that the field of dementia research is still very small in comparison with others, particularly bearing in mind the fact that the £26 billion annual cost is more than the combined cost to the country of cancer and heart disease. Despite that, only three new drugs have been discovered in the past 15 years.
Something has to change, and that is why the Government’s announcement of a dementia research institute is so important. It is important for three reasons, the first of which is security for researchers. I do not know how many hon. Members know any scientific researchers, but they are as interested as anyone else in having a career. When they pick a specialism to devote their lives to, they need to know that there is a future in it, and the likelihood of funding to sustain them throughout their career. At the moment, dementia does not provide that. A dementia research institute will do it. At the moment about 70% of PhD graduates in dementia research leave academic research within four years of starting. That is not good enough if we are to find a cure.
Secondly, in the search for a cure, a single molecular target is highly unlikely. There is not a silver bullet to cure dementia. There are many different types of dementia and different underlying influences. If we are to find therapies and cures, and things that will assuage dementia and allow people to live with it, we will need a huge amount of collaboration. In the past 20 or 30 years, the private sector has spent about £30 billion researching dementia across the piece, but that has been happening in different silos, often with researchers working on the same dead ends, and wasting the money three or four times. It is critical that we should collaborate, particularly internationally, in the search for a cure.
Finally, given that there will be no single molecular target, it is unlikely that there will be significant advances on a cure in the next 10 or 15 years. One of the Cinderella research areas, which does not get much funding or concentration, is care, therapy and management. One of my key wishes with respect to the new dementia research institute is that it should become a soup-to-nuts research institute, looking at diagnosis, care, therapy, psychology and support for families, as well as a cure. The Government announced about 18 months ago that the institute would be up and running within five years. That means there are only three and a half years left, and I would be pleased if the Minister updated us on progress, with respect to announcing a location, funding, and who will host the institute. Only once we have that centre of global excellence will we be in a proper position to tackle what is likely to be one of the top five public health challenges of the next century.
I congratulate my ever-industrious friend who secured this important debate, the hon. Member for Strangford (Jim Shannon).
Regardless of where any of us live in these islands, I am sure we agree that, from the point of diagnosis until the end of life, every person living with dementia deserves nothing less than the best care society can provide. In Scotland approximately 90,000 people are living with dementia, about 2,000 of whom live in my constituency. There is barely a family who have not been affected by that awful disease. Indeed, there is probably not a person in the Chamber who has not been affected by the illness. Yet all too often those who suffer from dementia are stigmatised and discriminated against, because their symptoms are sometimes difficult to handle, so they are sometimes treated with less respect and dignity than other members of society. That is unacceptable and must change.
I am delighted that the Scottish Government have made tackling dementia a national priority and that since 2008 they have funded the Scottish dementia clinical research network, which has brought together academics, clinicians, carers and people living with dementia, with the aim of turning scientific discoveries into safe and effective treatments. That collaborative approach is to be commended. Since coming to power, the SNP Government in Holyrood have put those living with dementia, and those who care for them, at the heart of their policy making. In 2011 they published the standards of care for dementia in Scotland, which gave people suffering from dementia guaranteed rights—the right to a diagnosis; the right to access to a range of treatments, care and support; the right to be regarded as a unique individual and treated with dignity and respect; the right to be as independent as possible and to be included in the community; the right to have carers who are well supported and educated about dementia; and the right to end-of-life care that respects the wishes of the person concerned.
I applaud the Scottish Government for the great work they are doing, but it is important to recognise that it would not all be possible without an army of people committed to caring, and to making and implementing policies. Scotland is blessed with a volunteer corps and carers who make that possible. In Argyll and Bute 2,000 people are living with dementia. A couple of months ago I was privileged to be invited to open, in my home town of Helensburgh, the brand new Alzheimer Scotland dementia resource centre, which has taken dementia care—figuratively and literally—from the back and side streets on to our high street. Our community now has a central hub, where people trained to provide support and education are constantly available. There is a drop-in centre, a performance area and a café, as well as space for individual and group therapy. It is a wonderful resource and I congratulate Alzheimer Scotland and its staff on achieving so much and making that happen—particularly Susan Russell, the service manager, and Jean Armitage, the policy and engagement manager. We know that dementia is a growing problem and that we have to tackle it; but let us not forget that there are already wonderful people making things happen in the community.
I pay tribute to the hon. Member for Strangford (Jim Shannon) for securing this important debate and for his long-standing focus on the issue. Last September when I was able to secure a debate on this subject I was very grateful to him for attending, and for his eloquent words, and I want to reciprocate today.
The subject is one of great significance—a significance that grows every day as our population ages and our life expectancy grows. It is an issue that is personally hugely important to me. I have supported the Alzheimer’s Society for many years, and recently in the House I co-hosted with the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) a dementia friends session for Members and staff. I am very grateful for all the work that she does on this issue.
Dementia is incredibly cruel. It can take a person away from us, even while they are still with us. As the hon. Member for Strangford and my hon. Friend the Member for Aldridge-Brownhills (Wendy Morton) set out, the basic facts are stark. My hon. Friend in particular drew attention to the challenge of early-onset dementia, which can often be forgotten, and we must remember the specialist services and support that people with early-onset dementia need and cater for them.
This is not a party political point. The Labour party should be very proud of its record in government on this subject, and I believe that this Government and this Prime Minister can rightly be proud of ours. We have heard a lot about the importance of awareness and understanding, care and treatment and research. My hon. Friend the Member for North West Hampshire (Kit Malthouse) was characteristically modest in talking about the Dementia Research Institute. The one thing he omitted to say was that it was his idea, and he should be rightly proud of what he has set in motion.
The aspect of this important issue that I want to focus on is the organisations and individuals who do so much to care for and support those with dementia. Setting aside for a moment the human impact of dementia, the estimated cost of dementia is £23 billion per year, with a large proportion of that effectively met by families and voluntary carers. We must remember the army of 670,000 all too often unsung heroes who help and care for people with dementia, as well as organisations such as Age UK and the Alzheimer’s Society, of which I am a member, and local councils and CCGs.
Last year, I had the pleasure of visiting the Poppies Memory Café in Syston, and later this month I will visit the Thrummy Drummer dementia support group in Thurmaston. Both do vital work in supporting those with dementia in Charnwood and providing respite to carers. Alongside the excellent support services in my constituency that play such a vital role for those with dementia and those who care for them, there is another service that is sadly under threat as we speak today. The CCG recently took the decision to cease funding the service based in the Birstall resource centre in School Lane in my constituency, which Age UK has run for many years. It provides a vital lifeline for 19 people with severe dementia and respite for their families and carers, with a further eight people waiting for referrals. The service is not only much valued but extremely well used in Birstall. The removal of CCG funding will cause the service to close, which will have a devastating impact. A glance at the CCG board papers suggests that the decision is not financial; its budget has actually increased.
It is deeply disappointing that the CCG has taken that decision. While I am grateful to the CCG for the time it has taken to set out its views to me, I remain unconvinced of their logic. The reality is that that service is of huge importance to everyone. I suggest that its closure would be a tragedy for those who use it and that the CCG is taking a short-term view in closing it; costs to the NHS will go up in the long term. I would like to take this opportunity to say that it is time for the CCG to pause, think again, accept that it has got this wrong and reverse the decision.
I had not intended to speak; I thought my name had been withdrawn from the list. None the less, having sat and listened to this debate, I would like to take advantage of the opportunity to do so. I will not take even the four minutes that you suggest, Mr Stringer.
This is an immensely personal issue for many families across the country. I reflect on a couple I know very well. The lady of the household started to forget things. She started to repeatedly cook the same menu for her husband, who got rather tired of shepherd’s pie day after day. Those warning signs led to her being referred to a memory clinic, which did indeed diagnose the early stages of dementia. Where that will lead, the family does not know. I emphasise what a harrowing experience it has been for that family. Support services are available in west Wales, where they live, but there is a concern and fear that as this terrible disease goes on, the terrible decision to which the hon. Member for South Shields (Mrs Lewell-Buck) alluded with her family might have to be made and the lady of that household will have to go into some form of residential care.
I want to highlight some of the challenges we have in rural Wales. There is a spectre of couples having to be parted, sometimes over very large distances, which causes agony for other members of the family who want to give support. Of course, the support that is available—often for too short periods—is invaluable to those families, but the lack of residential care in close proximity to where the families reside is a very real problem.
I reiterate the point I made in an intervention to the hon. Member for Strangford (Jim Shannon); I congratulate him on securing this debate because awareness of this devastating disease is so important. We must praise the wider community, including the community councils and district councils that have sought dementia-friendly status so that the everyday pursuits we all enjoy can still be enjoyed by everybody in society, including those with dementia and Alzheimer’s.
It is a great pleasure to serve under your chairmanship, Mr Stringer. I reiterate my congratulations to the hon. Member for Strangford (Jim Shannon) on securing this crucial debate. The attendance is a great testament to the importance of this issue.
I mentioned in my intervention that we were facing a tidal wave in the United Kingdom, and unfortunately my constituency of Solihull is at the crest of that wave. The latest figures I have, produced by the Birmingham and Solihull dementia strategy forum, show that the estimated number of people with dementia is 13,819 in Birmingham and 2,798 in Solihull. That number is predicted to grow by 31% to 3,800 in Solihull and by 18% to 16,300 within Birmingham. My constituency has an acute problem because it has an older population—clearly an older one than Birmingham. In fact, in the ward of Silhill, from which Solihull gets its name, 40% of people are over 65.
This is a hot topic nationwide and an acute one within Solihull. That is one reason why I decided to become a dementia friend in 2014. Like my hon. Friend the Member for Aldridge-Brownhills (Wendy Morton), I took part in a sponsored session. One of the most telling things I remember from that session in Solihull was the discussion about how memory is like two bookcases full of books. If we shake those bookcases, books from different levels fall out. They are never really interconnected; they simply lose their place, and over time more books are lost.
People’s progress down the road of dementia can be fast or slow. Something that was talked about at that session was the idea of “living well” with dementia, which seemed an odd choice of words at the time. We, as a society, have to ensure that we enable people to live as well as possible with dementia. As part of that, we need tailored care packages. Solihull CCG, for example, is leading the way with its virtual wards and trying to help people through step-down facilities from the local hospital. We had a major campaign in Solihull to save ward 10, a specific step-down facility. That led to the creation of a new facility, Ardenlea, over the road, which looks after individuals who are coming out of hospital at the most vulnerable time, when they already have the mighty battle of dementia on their hands.
We need to stop providing care and services in silos, as my hon. Friend the Member for North West Hampshire (Kit Malthouse) said. We need to stop thinking that this is someone else’s responsibility. Dementia care in our society is everyone’s responsibility—that means Members of Parliament, GPs, nurses, healthcare professionals and wider society. We must consider how shops are designed, how we design support services and how we talk to people and interact with them. We need to get dementia-friendly and get on top of this issue, because it is going to be the issue of the 21st century.
I congratulate the hon. Member for Strangford (Jim Shannon) on securing this important debate.
I am not sure that there is a scarier disease out there. This is a disease where a person loses their mind, no longer remembers who they are or who their family and close friends are, and lives in a world of isolation where they are constantly trying to make sense of what is happening around them. My dad was diagnosed with Alzheimer’s and dementia in 2006. From then on, we mourned the loss of him, piece by piece. We watched him deteriorate from a once handsome, articulate and thoughtful family man to an apparently empty shell, apart from small glimmers of recognition that are, in some ways, harder to bear.
With an ever-ageing population, this dreadful disease is becoming more prevalent. It puts pressure on families, services and communities. This cruel disease often means families can no longer care for their loved ones at home, leading to one of the most heart-wrenching decisions a family ever has to make. They may be able to remain at home, but that often puts a strain on the carer or carers looking after them, more often than not family members. Support must be put in place to allow carers to continue looking after their loved ones for as long as practically possible. They need respite and time away to recharge their batteries. They need aids and adaptations to make life a little easier. They need support from other carers and to be able to seek solace from those going through the same thing.
So what is the future? It is widely recognised that a number of risk factors affect a person’s chance of developing dementia, including age, genetics, medical history, lifestyle and even environmental factors. As my hon. Friend the Member for Argyll and Bute (Brendan O’Hara) said, the Scottish Government have made dementia a national priority. We believe that a rights-based approach to dementia care, treatment and support is vital and we will build on that with the upcoming third dementia strategy. The strategy for 2016 to 2019 will set out key priorities: to improve support in all areas of dementia care, particularly palliative care and end-of-life care; to prevent avoidable hospitalisation, because unfamiliar surroundings can cause untold distress to dementia suffers and their families; to redesign dementia services; and to capitalise on community assets and grassroots initiatives, such as the excellent South Ayrshire Dementia Association in my constituency and many more like it. As the number of people with dementia in Scotland and the UK grows, it is of the utmost importance to have good care in place. The Scottish Government will continue to reduce the risk factors for dementia by encouraging and enabling healthy and social lifestyles.
None of us knows what is in front of us. I can only hope and pray that a cure is found one day and we can stop our loved ones being slowly taken away from us in such a cruel way.
I am grateful for the opportunity to serve under your chairmanship, Mr Stringer, and to the hon. Member for Strangford (Jim Shannon) for raising this important subject.
Sadly, there is no cure for dementia, but diagnosis is important for understanding and so that support can be provided. Many welcome supportive initiatives have been developed in the community. For example, in my constituency, the local council has taken the lead in helping to make Burnley a dementia-friendly town and even offers free training to licensed taxi drivers. The initiative is part of a town-wide campaign to encourage residents and businesses to become more dementia-aware, helping Burnley to become a dementia-friendly town.
Raising awareness of dementia among transport services is vital. Some people living with dementia may lose the confidence to drive and become reliant on public transport. Taxi drivers may have friendly, familiar faces for people living with dementia and, if they have gone through a dementia information session, may be better equipped to understand their customers’ needs.
Suffering from dementia is difficult, as is caring for someone with it. It is important to recognise the needs of carers and to give them maximum support. I have seen the problems close up. My grandmother suffered dementia caused by Alzheimer’s disease. She moved from experiencing bouts of mild confusion to a total inability to cope unaided. As my family struggled to care for her, there was little if any specialist support or understanding, and eventually the family were forced to make the hard decision to admit her to residential care.
Things have improved since then: awareness has increased and more support is available. Projects such as the Butterfly project, which many hospitals have adopted and which helps to identify sufferers and to train hospital staff, are welcome developments. Sadly, however, carers are still too often undervalued and under-supported.
Last year, when doing research for my private Member’s Bill in which I tried to introduce free hospital car parking for carers, I talked to many carers, including several who were caring for loved ones suffering from dementia. I was affected by many of the stories I heard. One lady told me she had given up her full-time job to care for her husband who had developed dementia. At home, she fed, dressed and comforted him. When he fell and broke his hip and had to be hospitalised, she continued to provide the same care. She visited him every day, staying long hours, helping with his basic care and bringing calm. If she had not been able and willing to take on that role, it would have fallen to NHS staff.
It is estimated that carers save the NHS billions of pounds every year. At the same time, because caring duties may necessitate them leaving paid employment, many carers suffer financial hardship. I am shocked that the Government chose not to support my Bill, which would have offered some small assistance to carers. It would have sent a strong message of support to carers up and down the country that we value them. The way forward must be to increase awareness and to properly resource support for dementia sufferers and their carers.
Mention has been made of the Prime Minister pumping money into research, which is welcome, but while there is no cure, I would like the Prime Minister to pump money into improving care. That is not only the decent thing to do; it makes sound economic sense.
I congratulate the hon. Member for Strangford (Jim Shannon) on securing this debate and pay tribute to him for his excellent speech, which will have touched many hon. Members here, as evidenced by the turnout today, and our constituents.
My father’s mother was diagnosed with Alzheimer’s years before I was born and my only memories of her, albeit fond, are of her diminished self. My father has told me about how kind, warm and generous his mum was, but Alzheimer’s changed her personality and made her short-tempered, intolerant and at times aggressive. She was nothing like the big-hearted and loving wife and mother her family knew so well. In her final months, she was unable to recognise my dad, and that was heart breaking for him and the rest of the family. I remember that distinctly.
As a young boy, it was difficult for me to understand why she kept asking if she was a pest and required an answer every time. She seemed remote and at the time I did not know why. On one visit to us in Orkney, when my grandfather was admitted to hospital for an operation, she insisted on going to the shops to buy sweets for my brother and me, but would not hear of anyone taking her. In the end, my parents had to compromise, so I went with her: a four-year-old guiding and making sure a 71-year-old found her way and got home again.
I cannot imagine how difficult it must have been for my grandfather, my dad and my auntie to watch that slow decline in someone who was once central to the whole family—a war-time wife and mother, and a proud, capable and clever woman. The way my grandfather cared for her well into his 70s was phenomenal and incredibly touching. When she was hospitalised, he visited her twice a day, his own health suffering after years of devoted care and worry.
It is difficult not to speak about the negative impact of Alzheimer’s because the results are real and devastating. It is also difficult to see beyond the illness, when for so many loved ones that is what dominates their daily lives for many years, but wonderful work going is going on to help people with different forms of dementia and their families. In my area, NHS Lanarkshire is working with Dementia Friends Scotland and Alzheimer Scotland to run a dementia friends programme at Wishaw general hospital that supports staff to recognise the signs of dementia and supports them in recognising that people with dementia can live fulfilling lives when given the care, support, respect and dignity they deserve.
It is important to put on the record the five key messages of the dementia friends programme: dementia is not a natural part of ageing; it is caused by brain disease; it is not just about losing your memory; it is possible to live well with dementia; and there is more to the person than dementia. It is important that we are all mindful of our language and actions. This debate is helpful in highlighting some of the issues that the dementia friends work so hard to bring to the fore. We all recognise the challenges faced by those with dementia and their families. We cannot hide away from them. They are faced from diagnosis through to end-of-life care.
If I had more time, I would have liked to touch on some of the Scottish Government’s excellent work. I am glad that my hon. Friend the Member for Argyll and Bute (Brendan O'Hara) mentioned it and I thank him. In February, they introduced the Carers (Scotland) Bill, which enshrines in law for the first time in Scotland the rights of carers, coupled with a commitment, if re-elected, to raise the level of carer’s allowance to match that of jobseeker’s allowance.
I am grateful for the opportunity to speak today and I thank the hon. Member for Strangford for raising the matter.
I thank hon. Members for co-operating with the time limit on speeches, but if I am to get the last two speakers in, I must reduce it to three minutes.
Thank you, Mr Stringer, for allowing me the opportunity to speak in this very important debate. It is a pleasure to serve under your chairmanship.
I congratulate the hon. Member for Strangford (Jim Shannon) on securing the debate. I also congratulate the Bradford District Care NHS Foundation Trust on winning a national gold award for its work in the state-of-the-art dementia assessment unit at Lynfield Mount hospital.
The 850,000 people living with dementia today deserve to be properly supported to live dignified lives, but worryingly an Alzheimer’s Society poll found that 90% of people suffering from dementia felt that the support they received after diagnosis was inadequate, and 73% of GPs—the medical practitioners who arguably are on the front line in managing dementia in our communities—believe that our health and social care system is confusing for people with dementia and, importantly, their carers. As a society, we need to support dementia sufferers soon after diagnosis, so that they are properly prepared to manage their symptoms, especially as the symptoms will worsen as the illness progresses. They are best placed to plan and prepare their affairs, but they must be helped to do that. At present, those suffering from dementia are not properly supported by the Government.
As a society, we should also be supporting the legion of selfless carers across the country, who contribute £11.6 billion to the UK economy each year through that unpaid caring. Often, carers feel unsupported and isolated. We must ask ourselves as a society whether it is fair that those carers, contributing £11.6 billion in unpaid service each year, are allowed to feel unsupported and isolated.
That prompts the question: what more should the Government be doing? We are fortunate that there is no need to reinvent the wheel. An initiative run by the Alzheimer’s Society is already being piloted in communities. The carer information and support programme is aimed at family members and friends after a relative has been diagnosed with dementia. It involves attending information sessions in a group environment. The Prime Minister’s commitment, as shown by the “Prime Minister’s challenge on dementia 2020”, is commendable, and I am happy to place on the record my support, but the target date of 2019-20 is simply not ambitious enough. I therefore call on the Minister to commit in her remarks to exploring what extra funding can be made available now, not in 2019-20, to support the roll-out of the carer information and support programme to communities across our country.
I add my congratulations to the hon. Member for Strangford (Jim Shannon) on his exceptional speech and on securing the debate. It is a pleasure to speak, however briefly, in the debate as a co-chair of the all-party parliamentary group on dementia, as the only MP—I think that is still the case—who is a dementia friends champion, and as a former carer for my mum, who had Alzheimer’s disease. As we have heard today, if anyone’s life has not already been touched by someone who has dementia, it soon will be.
I commend the Government for their commitment and, in particular, the Prime Minister’s challenge and the investment in research funding that was announced last year at the World Health Organisation’s first ministerial conference on global action against dementia. It needs global action; we cannot act in isolation. It is estimated that by 2018 the global cost of dementia will be $1 trillion. I therefore ask the Minister to update us on the longer-term plans for building on that research investment and, specifically, what funding has been set aside to meet the challenges that make up the Prime Minister’s challenge on dementia and whether we are on track.
In addition to research, we need to ensure that hospital services take into account the specific needs of people with dementia. We know from the recent Alzheimer’s Society campaign, “Fix Dementia Care”—my hon. Friend the Member for South Shields (Mrs Lewell-Buck) mentioned some of the results—that 57% of carers, families and friends of people with dementia felt that the person they cared for was not treated with understanding or dignity in hospital; only 2% of hospital staff understood the specific needs of someone with dementia. We obviously need to address that. Could I put in a plug for the APPG report? Seven out of 10 of the people in hospital are not actually there for their dementia, but for something else. We have a report coming out next Wednesday on dementia and comorbidities, and I hope that people will be able to join us for that.
I am sure that my hon. Friend the Member for Worsley and Eccles South (Barbara Keeley) will mention this in her winding-up speech, but we cannot divorce the issues in relation to social care from dementia care. I called on someone, just in a regular door-knock, and she obviously had dementia. She was on her own. She greeted me with an empty medication bubble pack and just said, “I don’t know what to do.” Too many people are isolated in that way. So many demands are placed on family carers. I hope that the Minister can address some of those issues.
We have gone slightly over time because of the unusual circumstances, so could the Front-Bench spokespeople bear that in mind? You have marginally over seven minutes, and that will leave just over a minute for Jim Shannon.
It is a pleasure to serve under your chairmanship, Mr Stringer. I, too, congratulate the hon. Member for Strangford (Jim Shannon) on securing the debate. This subject is close to my heart, as I am sure it is for many people here in Westminster Hall, given the attendance today. I am sure that many hon. Members have a close friend or a family member who has suffered from dementia.
There is no doubt that dementia is a horrible disease that robs sufferers of their personality and their memories—everything that makes them them. The disease also puts severe strain on families and family relationships, as they try to understand and come to terms with it. As my hon. Friend the Member for Airdrie and Shotts (Neil Gray) said, it is important to make the point that dementia is not a natural part of ageing.
Some 90,000 people in Scotland are living with dementia, and we have heard today about the different factors that come into play in treating dementia, whether that is research, caring for people with dementia or supporting people who are caring for them. A number of my hon. Friends have mentioned the Scottish Government’s rights-based approach to dementia. Dementia is a disease and it can have a cure. It is great to have heard from many hon. Members about the work going on in their constituencies, whether it is universities or charities that are looking to research a cure.
There has been a lot of talk about carers as the unsung heroes of dementia care. An organisation in my constituency, the Forget Me Not Club, provides more than 500 hours of free care a week. I was amazed at the expertise that the people there had. Heather Morrison and her team do a fantastic job. They told me a couple of stories that I would like to share. They had one client who would continually stamp on the kitchen floor and the family could not work out why the person was doing that. It turned out that the kitchen floor had been designed in tiles of black and white and they thought that the black tiles were raised, so they were trying to stamp them with their feet. That was one part of their dementia. Another sufferer would not wash with soap when they went to the bathroom. It turned out that the soap was the same colour as the sink and bath. They could not see it, which was why they would not wash.
The expertise and experience of the people who work day in, day out with those suffering from dementia is so valuable, and it is so important that we praise the carers. That is why I welcome, as my hon. Friend did, the passing of a carers Bill in the Scottish Parliament earlier this year to enshrine in law for the first time the rights of carers. Furthermore, the Scottish Government’s carers strategy recognises that carers must be seen as equal partners in the delivery of care, as their support enables people to live at home, in their own communities, safely, independently and with dignity. I also welcome the Scottish National party’s pledge to raise carer’s allowance to match jobseeker’s allowance if re-elected.
We have heard that familiarisation is a very important part of tackling dementia and caring for people who have dementia. Not going into hospital and not becoming institutionalised is so important for people with dementia, which is why the Scottish Government identified, in their proposal for the national dementia strategy for 2016 to 2019, a number of challenges to be dealt with, including tackling avoidable hospitalisation, which worsens outcomes for people with dementia every time.
The hon. Member for Strangford mentioned the risks of alcohol as well as other lifestyle factors in contributing to dementia. It is important that we tackle the public health issues around that. I welcome the fact that the Scottish Government are taking steps to encourage people to remain physically and socially active, to discourage isolation and to encourage behaviour that has been recommended by the Caerphilly study.
I congratulate the hon. Member for Strangford (Jim Shannon) on securing the debate. Does the hon. Member for West Aberdeenshire and Kincardine (Stuart Blair Donaldson) agree that the Torbay Dementia Action Alliance’s memory café is exactly the sort of community initiative that can help to provide support to patients suffering from and living with dementia, and to their carers?
I completely agree with the hon. Gentleman. There are a number of strategies and community initiatives. In my constituency, another initiative is live music appreciation. Dementia sufferers and their carers can go along, listen to live music and join in if they want to. That was my first interaction with the Forget Me Not Club in my constituency, and it was a great thing to see.
Finally, the Scottish Government’s national dementia strategy also incorporates Alzheimer Scotland’s five pillars model of post-diagnostic support. Alzheimer Scotland does a fantastic job in providing advice, support and all manner of things for those suffering from dementia and for their carers. Its five pillars model includes:
“Planning for future decision-making…Supporting community connections…Understanding the illness and managing symptoms …Peer support… Planning for future care.”
All the things that charities, local communities, communities and the Government do will help people to live well with dementia.
It is a pleasure to speak in this debate with you in the Chair, Mr Stringer. I congratulate the hon. Member for Strangford (Jim Shannon) on securing this important debate. I recognise the remarkable amount of work that he does on social care and carers, and I thank him for that. We have had some excellent contributions from 14 hon. Members—almost too many to mention, so I will not mention them all. We are making some progress but we have a long way to go to improve care for people with dementia and support for their carers.
The Labour Government launched the first ever national dementia strategy, appointed the first national clinical director for dementia, and commissioned the National Institute for Health and Care Excellence to develop the quality standard for dementia. Together, those began the process of establishing memory clinics, providing better training for GPs and improving the quality of dementia care for people in hospital. I thank the hon. Member for Charnwood (Edward Argar) for mentioning that record. It is welcome that the Government are carrying on that work through the Prime Minister’s important challenge on dementia 2020. I am sure that hon. Members here today agree with the aims of that challenge but we have to accept that there is a long way to go before they become a reality.
Dementia is a distressing condition. In the long term we should be aiming for a cure, but while working to find a cure we must put equal emphasis on the care provided to people with dementia and the support provided to their families and carers. Carers UK reminds us that the symptoms of dementia can make providing care particularly difficult. People with dementia—we have heard about this in the debate—can grow agitated and violent, and night-time wandering and shouting can disrupt carers’ sleep.
Families report challenges in finding services that have the expertise to provide the right care and support. Of course, that means that it is more difficult for carers to get practical help or to take essential respite breaks as they do not have, or they lose confidence in, the quality and appropriateness of the care available. I welcome the strong case made by my hon. Friend the Member for Burnley (Julie Cooper) for better support for carers.
The care sector has a turnover rate of 25% so even when a care package at home is arranged, high staff turnover makes it harder to build familiarity and trust. For people with dementia, receiving care each day from someone they see as a stranger can be upsetting and confusing, and can make them more likely to refuse support, putting further pressure on their family carers. It is clear that improvement is needed, so can the Minister say whether the carers of people with dementia will be a key strand of the upcoming carers strategy?
I applaud the Alzheimer’s Society “Fix Dementia Care” campaign, which wants to ensure that people with dementia receive the highest standards of care in hospital, in care homes and in the home. It is of great concern that a survey of carers of people with dementia found that only 2% believed that hospital staff understood the specific needs of people with dementia, more than half felt that the person they cared for was not treated with understanding and dignity in hospital, and nine out of 10 felt that the person with dementia became more confused while in hospital.
The Alzheimer’s Society is calling for all hospitals to publish an annual statement of dementia care. In my area, it was pleasing that Salford Royal recorded information for patients with dementia and that the records showed that Salford Royal’s performance on a number of elements of care was better than national averages. However, other local hospitals did not record that information so there is much to do to bring that up to standard.
As part of improving hospital care for dementia patients, listening to carers would be a step forward. Nicci Gerrard is leading John’s Campaign for the right for family carers to stay with people with dementia in hospital, as we heard earlier. Nicci’s father John suffered a significant decline when he was in hospital for five weeks. Although the family felt that individual nurses and doctors were kind, conscientious and respectful, restrictions on waiting times meant that the family could not sit and talk to John, read to him, make sure he ate or keep him attached to the world.
John’s Campaign calls for the families and carers of people with dementia to have the same rights as the parents of sick children. They should be allowed to remain with them in hospital for as many hours as they are needed or are able to give. I understand that 272 hospitals across the UK have pledged their support to John’s Campaign. Will the Minister outline what is being done to improve hospital care for dementia patients and whether she supports John’s Campaign?
As well as improving hospital care, there are real concerns about the state of social care. The Association of Directors of Adult Social Services reports that £4.6 billion has been cut from adult social care budgets and that 300,000 fewer people are receiving publicly funded services than in 2009-10. Social care has been an easy target for cuts. I am concerned now that the Chancellor’s aim to find a further £3.5 billion in savings by 2019-20 will hit council and social care budgets even further.
The Government have stated that, by 2020, they want to see an increase in the number of people with dementia being able to live at home with more personalised support available to them and their families. That is a laudable aim, but the Channel 4 “Dispatches” programme last week showed just how poor home care can be, with time clipped from care visits, careworkers working very long days and not being paid for travel time, care needs neglected, and no time for the careworker to talk and listen to the person receiving care.
This year and next year are tough years for social care funding because home care and residential care providers bringing in the so-called national living wage have estimated they will face costs of £330 million in 2016-17 with no additional funding for this Government policy. The better care fund only provides £100 million extra next year, so this year is a problem. It is not surprising that careworkers say that issues with their pay and conditions prevent them from delivering good quality care. Unison found that three quarters of domiciliary careworkers do not have enough time to provide dignified care and that 84% of service users not getting enough time for care are people with dementia.
Caring for someone with dementia is not just about aspects of physical care. It is about conversations—knowing the person and knowing what is a comfort to them. Across hospitals, primary care and home care, we need to improve staff training and understanding of how to support people living with dementia and how to support and work with their family carers.
Carers UK reminds us that carers are the experts in the care needs of the person they care for, so it is heartening that today, Dr Julie Wray of the School of Nursing, Midwifery, Social Work and Social Sciences at the University of Salford is launching her book, “Supporting families and carers: a nursing perspective”. I hope that her nurse colleagues use the book to develop their knowledge of how to work with carers of people with dementia. They are the people who make such a vital contribution to the care of all those people.
I call the Minister. Would you leave a couple of minutes for Jim Shannon to sum up?
I will do my best, Mr Stringer. It is a pleasure to serve under your chairmanship. In the time available, and leaving a couple of minutes at the end, I will not be able to cover all the points raised in this excellent debate. I have never seen the Chamber this full at this time on a Tuesday morning, which is testimony to the importance of this subject.
I start by thanking the hon. Member for Strangford (Jim Shannon), who is a steadfast advocate for this vital cause. There is a great turnout on both sides of the Chamber, and it is clear—explicitly so in some speeches—that dementia and Alzheimer’s are topics that touch many of us in the Chamber today. As others have said, dementia and Alzheimer’s affect 850,000 people in the UK and impact widely on carers, families and wider society. I put on record at the outset my thanks to the wonderful national charities in this field. We value our close working relationship with them, and we value the way that they push us to be the best we can. From what has been said in this debate, it is clear that they have formed important local relationships.
Many hon. Members have made the point that dementia is a global problem that requires international collaboration to find global solutions, and the EU is helping to keep dementia on the international agenda, with the recent Italian and Luxembourg presidencies and the current presidency of the Netherlands prioritising dementia. It is an important issue and a shared agenda. Members on both sides of the House have been generous in supporting the Prime Minister’s 2020 challenge implementation plan, and I echo the support expressed by my hon. Friend the Member for Charnwood (Edward Argar) for the previous work, because we are building on important work done by the previous Labour Government. This is not a partisan issue; it is a challenge to us all. That is true internationally, too. The UK’s international leadership has been strong, and I hope that the UK’s presence will put dementia at the EU’s heart, building on the work that has already been done.
On working with Northern Ireland, as the hon. Member for Strangford knows, healthcare is a devolved matter, with each Administration responsible for its country’s healthcare, but there are many key collaborations and joint initiatives across the UK, notably in research. For example, the Medical Research Council funds dementia research across the UK, including in Northern Ireland, and people in all parts of the UK can sign up to “Join dementia research.” The subject of research has rightly has been much touched on. In particular, the challenges were ably outlined by my hon. Friend the Member for North West Hampshire (Kit Malthouse), who explained why there are particular challenges in this area.
I will reiterate some of the commitments that the Government have made. There will be: up to £150 million for the UK-wide Dementia Research Institute; £300 million to invest in dementia research by 2020; an increase in the total funding for dementia research from the National Institute for Health Research, research councils and charity partners; and more opportunities to participate in research. By 2018, 12% of people newly diagnosed each year will be registered on “Join dementia research,” with 10% participating, but there is more to do. Understanding the causes of dementia will help us to drive the development of treatments and industry innovation. Through things such as the dementia discovery fund, we want to ensure that we have innovative international approaches to making the most of the opportunities that come in the search for a treatment or a disease-modifying therapy, on which we have set ambitious targets.
I also stress, because it has come up again in this debate, the importance of research that also helps us to know best how to support, how to care for and how to improve the lives of people. We are funding things that will have immediate benefits within the next 12 months, as well as things that we hope will bring about a cure or a disease-modifying therapy. One example is that we have commissioned a £20 million research initiative on living well with dementia, funded by the NIHR and the Economic and Social Research Council, which focuses on issues that really matter to people in terms of the practical, day-to-day challenges. Again, there will be opportunities to talk about those in the House.
We have made big progress. Record numbers of people are joining dementia research. We have ambitious targets in that regard, and I hope that hon. Members on both sides of the House can help us to meet them. Diagnosis is vital, as has been mentioned in the debate. Again, huge improvements have been made in the diagnosis rate, from 42% in 2010-11 to 67.4% at the end of February 2016, an increase of around 25 percentage points, but there is more to do, particularly to drive out variation. There is still considerable variation, but ongoing and regular effort is being put into that. I pay tribute to the considerable leadership being given by the NHS’s national clinical director, Alistair Burns.
Meaningful care has rightly been highlighted by Members on both sides as one of the biggest challenges. I am supported by an excellent team of officials in this area, and they are well aware that this is a challenging area. In particular, post-diagnostic support is challenging for the person who is diagnosed, but it is especially challenging for their carers and family. The hon. Member for Bradford South (Judith Cummins) was right to pay tribute to some of her local initiatives and to highlight how big this area is. The joint declaration on post-diagnostic dementia care and support was signed by leaders across the health, social care, local government and voluntary sectors, and it is the first time that we have had an unequivocal joint commitment to improving care and support for people with dementia and their carers following diagnosis. We want to see joined-up plans for health and care support in every area, with personalised care plans for every person with dementia. With NHS England and other partners, we have developed ways to drive that and to measure it within our implementation plan.
Members have rightly said that carers play a pivotal role. I am all too aware of the strain that a dementia diagnosis puts on other family members, which has been rightly highlighted in this debate. We recognise and pay tribute to the pivotal role that carers play. I have touched on progress in research, but I emphasise that we want to see people with dementia, their families and carers live well and have meaningful support.
Time does not allow me to talk in any detail about the carers strategy, but we have launched a call for evidence to inform the cross-Government national carers strategy on what more can be done, and there is clearly much to do in the field of dementia. I encourage all Members to contribute to that, and to encourage their local groups to do so. Carer’s allowance has been touched on. We are rightly being challenged on the money being spent on care, but we are spending more than £2 billion a year on carers’ benefits in Great Britain, supporting more than 750,000 carers. The rate of carer’s allowance has increased since 2010, but I am afraid that time does not permit me to go into detail. I am sure there will be occasions to do so in other debates.
We are further supporting the implementation of improved rights for carers—including carers for those with dementia—enshrined in the Care Act 2014. That is backed by £104 million of funding in 2015-16. The better care fund brings the great promise of more important work on integration, and there are some exciting examples of local initiatives, particularly coming out of Greater Manchester. Again, there will be other opportunities to talk about how the better care fund and those integrated vanguard models can lead the way to more improved care and support for people with dementia.
The role that charities and communities play in enabling people with dementia and their carers to live well through initiatives such as sport, music and dementia cafés has rightly been mentioned. There are some wonderful initiatives, including the Sporting Memories Network, and I pay tribute to all the local initiatives mentioned by hon. Members. I was recently privileged to visit an initiative led by the Manchester Camerata and its music therapist—wonderful work is being done there. There are some 1.5 million dementia friends in England and Northern Ireland doing wonderful work, and a public awareness campaign is under way in Northern Ireland.
There is little I can say in the time available on risk reduction other than that it is vital. Dementia is not an inevitable part of ageing, and up to 20% of those diagnosed with dementia have vascular dementia, the effects of which can be minimised or prevented altogether by a healthy lifestyle. Members are right to draw attention to work on factors such as alcohol, exercise and weight—I hope there will be a chance to say more about that in a future debate. I ask Members to encourage their constituents to take up their free NHS health check. We are piloting initiatives on early-onset dementia awareness.
Let me end by congratulating all hon. Members on their contributions. I refer them to our implementation plan, which was launched last month and has much detail about how we are responding to the Prime Minister’s 2020 challenge. As I close and leave a few seconds for the hon. Member for Strangford to respond, I reiterate that the Government’s commitment to this subject is absolutely undimmed, and it is clear from the contributions this morning that Parliament’s commitment to this important cause also burns brightly.
In the very short time that I have, I thank the Minister, the shadow Minister and hon. and right hon. Members for their significant contributions. All political parties have participated, and all regions have taken part. We all want the same things: advances to find a cure to a global problem; more money to be spent on medical research; thanks to the carers, paid and unpaid; and diagnosis, follow-up care and end-of-life care. Make the simple changes. I thank everyone for their personal stories, too.
Motion lapsed (Standing Order No. 10(6)).