(9 years, 3 months ago)
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I beg to move,
That this House has considered dementia care services.
It is a pleasure to lead this debate—the first in my name since my election—under your chairmanship, Mr Davies. It is also a pleasure to debate with a Minister whose commitment to this cause is well known, on a subject of such importance. Indeed, its importance grows daily.
I am particularly pleased to see my hon. Friend the Member for Wealden (Nusrat Ghani) next to me. I hope that she plans to speak in this debate, because her work in her constituency on this subject, and the depth of her knowledge, is well known and will be of great benefit to the House.
Dementia is incredibly cruel; it can take a person away from you even while they are still with you. It is estimated that there are around 850,000 people with dementia in the UK; that 21 million people have a family member or close friend with dementia; and that a third of people over 65 will develop it. The majority of those 850,000 people are over 65, but an estimated 17,000 people below that age have dementia. In my constituency of Charnwood, it is estimated that just over 1,000 people have dementia. All of this—put aside the human consequences for a moment—is estimated to cost around £23 billion per annum, with a huge proportion of that being met by families, either through care that they engage or through the free hours of care that the 670,000 voluntary carers provide. The challenge before us is huge.
Significant progress on dementia has been made in this country in recent years. However, while we as a society have made significant strides in improving our longevity and our ability to fix and patch up our physical selves through the medical profession, our understanding of and care for the mind have fallen behind somewhat. Dementia poses a massive financial challenge to our country, as people live longer—a good thing, but a partial consequence is an increase in the number of dementia cases.
The last Labour Government should be rightly proud of their work in bringing forward the first national dementia strategy, and I pay tribute to them, through the shadow Minister, for that far-sighted step. It is a baton that the current Government, and particularly this Prime Minister, have seized with vigour; there has been the Prime Minister’s challenge on dementia 2012, the G8 dementia summit, and the Prime Minister’s 2020 challenge. All this is hugely positive, and dementia is an issue on which there is considerable consensus in all parts of the House, and among all the parties represented within it. However, we must not think for one moment that we have done enough, nor lose the momentum built up thus far.
I congratulate the hon. Gentleman on bringing this matter to the House for consideration. A great many of us across my constituency of Strangford and the whole of the United Kingdom of Great Britain and Northern Ireland know people who suffer from dementia. Just last week, I had the opportunity to go to what is referred to as a memory café, which is organised by the Alzheimer’s Association, which is a wonderful organisation. I met some wonderful people, as well as their carers and families. Does he recognise the good work that the Alzheimer’s Association does? Does he feel that now is the time to not only raise awareness of Alzheimer’s but commend the Alzheimer’s Association for its work?
In addition to the hon. Gentleman’s many talents, which are well known in this House, he appears to be a mind-reader, as I was about to come on to that subject, having visited a similar memory café on Monday. He is absolutely right to highlight and pay tribute to the work of such places. On Monday, I went to the Syston community centre, where our local Alzheimer’s Society group was holding its regular Poppies memory café session for about 30 carers and people with dementia. As I am sure the hon. Gentleman did on his visit to his local memory café, I met some amazing people and it was a fantastic session. My memories of that session, and the lessons I learned from it, remain with me; I continue to reflect on them. However, across the UK, including in my region—the east Midlands and Leicestershire—the access to and coverage of such vital services remains patchy; that was a message I got loud and clear from the people I spoke to. As I suggested, that session left me in no doubt about the vital role of dedicated and passionate carers, including the amazing people whom the hon. Gentleman and I met, in helping people with dementia.
I am most grateful to my hon. Friend for securing this debate, and he has made some powerful points. I would like to share with him some things that we are doing in Cheshire, and indeed in Weaver Vale. Dementia awareness is so important. My staff have received dementia awareness training, so that we can identify people with dementia. Also, our local town centres are dementia-friendly, which is significant. It enables people to come out as families and they are made most welcome in town centres, such as that of Northwich. Does my hon. Friend agree that town centres across the country should be dementia-friendly?
Yet again, it appears that another hon. Member has the facility of reading minds and anticipating speeches, because I was about to say that there remains too little understanding of dementia in our communities, despite the progress made, and dementia-friendly communities and workplaces can play a hugely important role in supporting both those who have dementia and those who care for them.
I encourage the Minister to push all Government Departments to become dementia-friendly workplaces, and to keep talking about dementia and raising awareness of it. I also encourage her to keep the NHS talking about it. I know that other hon. Members—not least the shadow Minister, the hon. Member for Oldham East and Saddleworth, who is chair of the all-party group on dementia and possibly the only dementia champion in this House—will continue to raise these issues, as the shadow Minister has done over many years.
A recent survey showed that 25% of 18 to 25-year-olds are keen to learn and understand more about dementia, as opposed to only 15% of those aged 55-plus; that was a 2012 YouGov survey, so it is relatively recent. While it is encouraging that young people are keen to understand and learn more about dementia, those figures are still far too low.
One thing that I became aware of after visiting the memory café last week and speaking to some of the people there—by the way, the Big Lottery Fund was one of the funders of that café, so it is doing good work—is that the age of those being diagnosed with dementia and Alzheimer’s is starting to fall. There are some people in the 40-to-50 bracket who have dementia, which worries me. Does the hon. Gentleman feel that there is anything we can do to raise awareness of that issue?
The hon. Gentleman makes a valid point. Just last Saturday, I was at a gala in Anstey, which is a village in my constituency, and a man came up to talk to me about this issue. He said that a lot of emphasis is put on those in their 60s or 70s who develop dementia, but he told me about a lady who had developed it very early in life, which creates a whole new set of challenges around children, paying mortgages and the support that should be in place but is not always there. I will come on to the support that is or is not in place shortly.
The second part of the picture is about diagnosis and care. Diagnosis rates have improved. In 2011-12, only 45% of people with dementia received a formal diagnosis, but Department of Health figures suggest that the figure is now up to 59%, which is real progress. I know that 66% was the target set for the end of this year, but can I encourage the Minister to go that little bit further and press for a 75% target for diagnoses by 2017? That is ambitious but achievable, and if we do not set ambitious targets we will not achieve them.
However, diagnosis is only the start. Too many people tell of being diagnosed and then receiving no information or support, or only very limited information or support. In a recent Age UK survey, 89% of those surveyed said that they did not feel they had enough information about dementia. We need to improve GPs’ understanding of dementia care; many GPs are fantastic, but that is not universal. We need to ensure that after a diagnosis, people and their families receive information on “What now?”, as well as support. What steps do the Government propose to take to create minimum mandatory standards to ensure that everyone with a diagnosis receives swift signposting and advice from dementia advisers and a proper support package for them and their carers, possibly through the NHS outcomes framework?
We all know—all the research shows this—that once someone is diagnosed with dementia, if they are to continue to lead a full life, it is best for them to be able to live independently at home with their family, but if they are to do that, we must ensure that carers are cared for and supported, and that support plans are in place—as much for the carers as for any individuals with dementia. A recent pilot in Norfolk on the use of Admiral nurses—they are the dementia equivalent of Macmillan nurses, and although they are sadly rather less well known, they do a fantastic job—saved more than £400,000 and provided a strong local support service for carers and people with dementia. What consideration have the Minister and the Department given to how that might be made more widely available? What support can be given to local authorities in that respect?
We are all aware of the funding pressures faced by local authorities—not least my own, Leicestershire. It gets one of the lowest per-head funding settlements in the country, and I hope that that can be reviewed and revisited in this Parliament, with rural councils being given a fairer share. While I would not presume to burden the Minister with responsibility for dealing with the local government finance settlement as well, what progress has been made nationally on developing integrated dementia care pathways, which can go some way to alleviating financial pressures?
While care and support to stay independent at home are key, there are times when people with dementia have cause to be admitted to hospital, and here the picture is by no means universally good. According to a recent survey, 41% of hospitals do not include dementia awareness training in staff inductions, and only 36% have a care pathway in place. Many people with dementia still have real problems when they are admitted to acute care. More research into the quality of personalised care for those with dementia, particularly in hospitals, would be immensely valuable. It is estimated that a quarter of hospital beds are occupied by people with dementia, although they might not necessarily have been admitted for dementia. On average, such people have a 20% longer hospital stay than others.
While some hospitals have made progress in having dementia-friendly wards, it simply is not enough. We should have hospitals that are dementia-friendly in their entirety. We often hear of instances of people with dementia not having that noted on their hospital records, meaning that no allowance has been made for it. We also hear of carers and partners not being allowed to stay with relatives with dementia in hospital, which often leads to acute anxiety and distress among those patients at being in an unfamiliar environment without any familiar faces around them. I hope that Simon Stevens and the NHS can look at that.
The national dementia strategy and the Prime Minister’s challenges on dementia for 2015 and 2020 set out an array of targets and objectives. The key to success, however, will be proper implementation to deliver clear and focused outcomes that are measured, monitored and reported. Will the Minister update the House on the implementation plan to achieve the objectives that we all welcome, and to ensure that dementia care gets its share of the very welcome additional funding that the Government have pledged to the NHS as a whole? Specifically, as we look at how to improve care and support, 37 NHS vanguard sites are piloting new care models, but only three make specific mention of dementia. Will she consider adding to that number? The National Institute for Health and Care Excellence is updating the 2006 clinical guidelines on dementia. That work is due to be completed in September 2017. Will she make representations to NICE on updating the dementia quality standard as part of that? It is an important tool in driving up NHS standards in this area.
The third and final part of tackling dementia is research. We have seen some encouraging early signs over the summer that finding a way of slowing down the progress of dementia might be that little bit closer. There is still a long road ahead for that research, but it is a reminder of the importance of a continued focus.
As a Dementia-Friendly Hampshire ambassador—I am not quite a champion, but an ambassador—I welcome the debate and remind my hon. Friend of the Government’s commitment just before the election to creating a dementia research institute somewhere in the UK within the next five years. Does he agree that it would be helpful if the Minister updated us on the funding envelope for that, and the implementation plan for it over the next four and a half years, given that time is running out for its creation? I have to declare a slight interest, as the idea was fermented at City Hall. I may have had a hand in it, and therefore have a stronger motive to see it come to fruition.
I am grateful to my hon. Friend, and I am beginning to think that I must be careful about what I think, because yet again a Member has touched on a paragraph I was about to begin. He is absolutely right. The Government’s dementia research funding now stands at £66 million. That is double what it was in 2010, but we need to be clear that we must not stop there. I was pleased that earlier this year the Government reaffirmed their commitment to doubling the dementia research spend by 2025. That is vital, and I know that Members on both sides of the House, in the spirit of constructive support, will help to hold the Government to that. Will the Minister commit to collating information on that spend centrally, and to publishing it annually, so that we can track progress? Coming to my hon. Friend’s point, I would be grateful if the Minister updated the House on the plans for a dementia research institute to drive forward research in a truly world-leading way. I pay tribute to my hon. Friend for the work he did in City Hall, and as a Deputy Mayor, in pushing that agenda forward.
Finally and most importantly—I declare an interest as a member of the Alzheimer’s Society—I pay tribute to such organisations as the Alzheimer’s Society, Alzheimer’s Research UK, Age UK and myriad others for the work they and their members do to ensure that we in this House and society never forget this cause, and that we continue to support the tens of thousands of people with dementia—and the voluntary carers, who are the real heroes and heroines. We have a duty to recognise what they do, and to do everything we can as a country to support them. I look forward to the Minister’s comments on what we can do to support carers.
I will close by quoting from a moving and powerful article by Alice Thomson about her father’s dementia. It was published in The Times this summer. She said:
“Old age shouldn’t be seen as a humiliation but more as the other bookend to your childhood; a time when you can rely on the help and patience of others to reach the end but can also still be a central part of family and community life”.
I echo those words and ask the Minister, the Government, all of us and society as a whole to continue to rise to the challenge and to make that a reality for all those who have dementia in this country.
It may be helpful if I point out that for hour-long debates, we need 20 minutes for the Front Benchers: five minutes each for the two Opposition Front Benchers and 10 minutes for the Minister. If the Minister leaves any time at the end, Mr Argar may get a few seconds to wind up. I will be going to the Front Benchers no later than 5.10 pm. As I understand it, three Members are seeking to catch my eye to make a speech. I will not impose a time limit, but if they think of taking seven minutes each, that would give everyone a fair crack of the whip.
It is a pleasure to serve under your chairmanship again, Mr Davies. I congratulate the hon. Member for Charnwood (Edward Argar) on securing this important debate and on his commitment to making life better for dementia sufferers and their relatives. I will not take up much time, and my observations are probably from a more personal point of view.
I completely support the Government’s objective to be a world leader in fighting dementia, but it is a challenging objective at a time of cuts in social care and given the difficulties in recruiting people to work in jobs that have traditionally been poorly skilled and badly paid. Social care is fundamentally task-orientated. It best supports people with physical disabilities and frailty, but it is not necessarily the best way to help people who have dementia.
In an area in which I have some personal experience, I know that the quality of the relationship between the carer and the dementia sufferer is vital in enabling the dementia sufferer to feel reassured and cope with anxiety, which is a common consequence of the illness. One of the symptoms of dementia is a complete loss of short-term memory, which results in the inability to do simple tasks. For example, a dementia sufferer may see a cup, a tea bag and a kettle, but not the connection among them. Making the cup of tea is, of course, an important task to ensure that the person does not become dehydrated. However, once the tea is made, the elderly person may be reluctant to drink it and may need continuous prompting. If the carer is new and does not know the person, and can spend only 15 minutes with them, the cup of tea may never get drunk.
A person’s relationship with their carer and the amount of time they can spend together is vital. It is sometimes forgotten how important relationships, emotional support and encouragement are to people with dementia, and how vital it is not to add to their confusion with multiple carers. Particularly when a person has no near relatives, the carer has to get to know them to understand when something is wrong with them, because a person with dementia cannot tell the carer themselves that their dentures are too tight.
Dementia sufferers need good quality care, and carers must have good antennae to be able to spot, for example, the signs of a urinary tract infection by changes in the person’s behaviour or level of confusion. We therefore need to move from a task-centred social care system in which multiple carers make short visits to a system that involves skilled care in which continuity of care and carers’ skills are a high priority. Simply integrating the health and social care system does not necessarily do that, as my experience in Scotland shows.
Of course, we cannot produce a vast army of skilled carers now or in the near future, particularly given population changes, so we need to look at how we can better use existing resources, including relatives, who at the moment seem to spend most of their time negotiating the system. The constant rounds of phone calls to doctors, nurses, occupational therapists and social workers leave relatives exhausted and with less time to spend with family members on social activities. There needs to be more support for relatives, who are important for ensuring the continual wellbeing of their family members.
We also need to be more imaginative about using technology to help people with dementia to free up the time for relatives and carers to build those important, high-quality relationships. We still tend to think of aids in practical terms, such as hand rails, bath mats or clocks with large faces, but I am interested in how we can use new technology to promote emotional wellbeing. For example, carers could help people to communicate with their relatives via Skype or smartphones, or set up digital photo frames that can be programmed to show photographs, which can help spark memories and support conversations. Relatives can link cameras to their smartphones and computers to check whether the person is all right at home, and they can use technology such as personal alarms and health monitoring devices. For example, bed pressure sensors can help reassure from a distance that the person has got out of bed, and a front door sensor can ensure that they have not left the house.
Hopefully, a cure will be found for this devastating illness, but until then we need to use the resources that are currently available better. In particular, we should develop technology, which, if it can free social carers from monitoring and supervision, would be very helpful in freeing up resources. We also need to use the resources of relatives, neighbours and the community. I hope that in the future we will be able to look at what the whole system can provide.
Thank you, Mr Davies, for the opportunity to contribute to this important debate. I congratulate my hon. Friend the Member for Charnwood (Edward Argar) on securing it. He raised many issues that I was going to speak on, so I will keep my speech short. I must declare that I am the chair of the all-party group on ageing and older people, and I previously worked for Age UK. Dementia is an issue particularly close to my heart, and I am delighted that we have the chance to discuss it today.
On 12 September, All Saints church in Crowborough in my constituency is hosting a day conference entitled “Living with Dementia”. Hilary Mackelden, a constituent of mine, once feared that she had dementia, and wrote about the condition in my local paper, the Kent and Sussex Courier:
“There can be no more terrifying illness. How do you cope in a world you don’t recognise, with people who say they love you but who you think are strangers?...How should that world respond to and support you?”
In our ageing society, ever greater pressure is being put on healthcare services and charities, so our response to dementia is a vital humanitarian and social care issue. In my region of east Sussex, one in four of the population is aged 65 and over. It is predicted that one in three people aged 65 and over will develop dementia, which means that as many as one resident in every 12 could suffer from the condition. What is more, it is estimated that there will be an 11.3% increase in the number of people aged 85 and over in east Sussex by 2019. That means not only that more people will develop the condition as they grow older, but that those who develop it at an early age will require care and support for a longer period as their life expectancy increases, which will inevitably put huge pressure on care providers.
In Wealden, under the leadership of Councillor Bill Bentley, we are already tackling our responsibility for managing the multiple healthcare and social care needs of our elderly. There are concerns that budget restraints will affect the delivery of community-led programmes for dementia sufferers and respite for their carers.
Dementia-friendly communities do much to promote the rights, welfare, independence and livelihoods of people with dementia, and they help to eliminate the stigma that surrounds it. My right hon. Friend the Prime Minister championed them as part of the Prime Minister’s challenge on dementia. I am proud to represent Rotherfield, a dementia-friendly village. We do not yet have a dementia-friendly town, but I will go home with that ambition. The church of Rotherfield St Martin is a charity that works to ensure that elderly people are supported to live their lives the way they want to. It is run by Jo and Sasha Evans, who should be commended for their work. I was delighted that Rotherfield St Martin was nominated for a “Small Charity, Big Achiever” award at the Third Sector Awards last month. I wish them every success when the winner is announced in a couple of weeks.
We should not underestimate the work of local councils, which support people with dementia by helping to create dementia-friendly communities. The upcoming spending review is an important part of the Government’s entirely necessary effort to eliminate the deficit, but I hope it will not compromise local councils’ ability to support dementia-friendly communities. What action is the Minister’s Department taking to ensure that future funding settlements take account of our ageing population? What pressure does she anticipate that local authorities—particularly those in the south-east—will face in the coming years? Projections tell us that we are likely to have to reduce significantly support for people with dementia and their carers. I urge the Minister to ensure that does not happen.
By 2021, there will be more than 1 million people living with dementia in the UK. One in three people over 65 will die with dementia, and dementia costs the UK £23 billion a year, not to mention the incalculable costs to individuals and families, who give so much time, energy and love to offer care. NHS England has been set a target of diagnosing 66%, and my hon. Friend the Member for Charnwood mentioned reaching a target of 75%. Has that target been met, and will we continue to be ambitious by setting even higher targets?
At the heart of the issue is the fact that dementia takes so much away from people: their ability to recognise loved ones, remember special occasions and communicate as they once could. It would be cruelly ironic were we to allow some of the support that dementia sufferers and their carers depend on to be taken away. We owe it to dementia sufferers and their carers to fight for the support they count on and the funding it requires. I hope this debate will throw that obligation into sharp relief.
I declare an interest as a proud supporter of the Dementia Friends movement, which has done so much in my constituency. I praise in particular Mrs Christine Parker, whose work in bringing the Dementia Friends message to so many in Tonbridge has echoed across other areas. I draw inspiration from her for my remarks, which I hope I can make on her behalf as well.
The rising demand on the NHS in my community is not unlike that in others. One in three people in my constituency is over 65, so the pressure on dementia services is naturally high. Indeed, 1,600 people in my community have dementia, and in the west Kent NHS region, 322 are under 65 and therefore count as young dementia sufferers. As my hon. Friend the Member for Charnwood (Edward Argar) so eloquently put it, when we think about dementia and old people, we usually think about people for whom it is an end-of-life event, but for too many in our society it is not—it is part of life. It is something with which individuals, families and communities—indeed, our whole society—will have to live as they experience this terrible disease.
It is important that we work together, because this is not something that central Government can solve alone; nor, indeed, can the devolved Administrations or local government. It requires a fully joined up approach. The work by a lot of third-sector organisations to bring together the community at all levels has been essential. I particularly praise the organisations working in my part of Kent: Age UK, Crossroads, the Alzheimer’s Society and many care homes.
In his speech, the hon. Member for Charnwood (Edward Argar) mentioned the need for more research and development. There have been massive steps forward in the development of medication that can delay the onset of Alzheimer’s and dementia in some cases. Although that is a wonderful step forward, the cure is not yet here. Does the hon. Gentleman feel that, along with all the good work that the Government are doing, there should be more partnerships with the pharmaceutical industry to ensure that we can take more giant steps forward?
I can confirm that the hon. Gentleman is not reading my mind—I had not thought of those points. He makes a very important point about tying together with the pharmaceutical industry. I would also urge tying together with universities throughout the country, because many of them across the nation have done incredible work on this issue. I urge my hon. Friend the Minister to look hard at what more can be done to partner up.
Many of the issues have already been covered today so eloquently by Members, so I will just highlight one area that I feel is somewhat tragically overlooked. As we increasingly see younger people suffering from this terrible disease, we must recognise that their needs are different. We are talking about not only old people who may also suffer from other weaknesses and might not be going out as much as they once were, but younger people who rightly expect to enjoy some form of independence in their life. Indeed, through medical treatment, older people are, thank God, much stronger and fitter than they once were and rightly continue to enjoy active lives for longer and longer.
As a society, we should do more to encourage dementia-friendly transport. In my constituency, we have been working towards dementia-friendly communities, whether towns or villages, and we have had some success in different areas. In fact, some places have developed a dementia-friendly high street and various other spaces. Nevertheless, I feel we have not yet got dementia-friendly transport right. Whether we are talking about taxis, buses or trains, the ability to be able to put someone with dementia on a form of transport and know that the people on board will be aware that there might be an issue, allowing people with dementia to maintain some level of independence, is essential if we are ever to achieve the result we wish for: people with dementia living happily and comfortably as part of our society.
Finally, when I learned about dementia, what struck me most was the importance of emotion, which we too often forget when we medicalise and use too much science. When we deal with people in our communities who have dementia, it is important to remember that even if they struggle to understand who we are, the community they are in or the actions they are taking, the one thing that will stay will them, which we must really value, is the emotional response. We must remember that that will live with them for a lot longer than any confusion, and we must make sure that we play our part as individuals—not just as a society—in ensuring that that emotion is positive.
I commend the hon. Member for Charnwood (Edward Argar) for securing this debate on what is probably one of the biggest challenges we will face over the coming decades. There is no easy answer, north or south of the border or on either side of the House. I think we all fear it. Previous generations have feared other illnesses and avoided them. They talked about consumption instead of TB, or about “the big C” instead of cancer. Most of our generation are less afraid of cancer than of Alzheimer’s. We are afraid of disappearing, or of being married to someone who simply is not who they used to be. That is a fear we all live with.
The Scottish National party welcomed the then Government’s introduction of a national dementia strategy in 2009. The Scottish strategy came in 2010. We set out clinical standards the following year and updated our strategy in 2013. We reached the 64% diagnosis target in 2013, when England was diagnosing 48% of those with dementia. I commend the fact that that has now risen to 59%, although there is obviously more work to do. Northern Ireland was diagnosing 63% of sufferers. What happens to someone when they are diagnosed? Think of the fear that we all have, and then imagine the bombshell that diagnosis is.
There is no easy answer, but we have done a few things in Scotland that we feel have worked. All our health boards now have a linked member of staff, like the cancer nurse specialists we have for breast cancer, which was my specialty. Since 2012, we have had the older persons’ acute care plan, which looks at secondary care and modern hospitals. I welcome the talk about dementia-friendly towns and villages—I will go home and throw down that challenge to my area, because that is not something I have come across.
In the past 18 months, our hospital has been completely redesigned, with colour zones and images of what everything is, instead of just words. Toilets, beds, kitchens—how to find one’s way around is all visual. We also have champions in every single ward. All that has really changed things. We have reduced length of stay from 22 days to eight days; we have reduced falls by half, and we have reduced returns to A&E from 26% to 8%. These relatively cheap, simple changes actually save a lot of money.
We obviously need more research and development, because at the end of the day families want a treatment to make early diagnosis worth while. Otherwise, what is the point? We have to be able to intervene. We can slow things down, but we want a drug that will stop dementia and reverse it. At some point further down the line, we will face the challenge of drug companies coming to us with an expensive drug that will do that. It will be important for the National Institute for Health and Care Excellence and other agencies to weigh up the sheer scale of dementia that we face and the money that could be saved by using even quite an expensive drug.
One of the interesting developments over the past couple of years, which was looked at by Dennis Gillings, the international dementia envoy appointed by the G8, has been the question of whether the financial equation around the development of a drug could be changed by negotiating an international exception for its patent life, extending it by, for instance, five or 10 years. That might propel investment into research to find a cure and also make it cheaper when it does emerge, because the time for commercially exploiting it would be extended. Would the hon. Lady support such a proposal?
I absolutely would. In my previous life as a breast cancer surgeon, when I was also doing breast cancer immunology research, I watched what became Herceptin go from its development on the bench-top into common use. That took 21 years. This is something we often do not recognise when we moan about big pharmaceutical companies: they are investing in something that may turn out to be a mirage. The more that we can look at supported or shared R and D, the cheaper the drug will be when it finally comes to market. I would commend something like that.
The current problem is that most patients face living with dementia, and we must think about how we help them and their families to do that. We should be challenging ourselves to make dementia-friendly our surroundings and all the agencies that sufferers may interact with, whether through visual aids, through other people recognising them or, as the hon. Member for Stockport (Ann Coffey) said, through technology. The eHealth programme in Scotland is working on that, including devices in patients’ homes that it can interact with and establish whether the person is okay. Much of the care that people receive is the 15 minutes that the hon. Lady mentioned. How can we improve that? How can we ensure that the faces are not different every day? Some patients and families report 100 carers in a year. We should look at how we organise the care and remember who the real carers are: the family.
It is predicted that one in three of us will be carers for someone with dementia. We have a vested interest in ensuring that we look after them. The carer’s allowance is currently £60 a week, which does not even match jobseeker’s allowance, for a job that could be 164 hours a week, so we need to think of how we support carers and the work that they do. In Scotland, things are slightly different as we have free personal care, so the family does not pay for the carer who comes into the home. If that person has to go into a care home or nursing home, they do not pay for the personal care. The system has been expanded and deepened and actually allows us to keep more people at home for longer.
One problem is that care jobs attract lower earners. How can we motivate people and attract high-quality candidates if they are being paid the lowest possible amount?
On free personal care, the budget in Scotland is capped. Free personal care is probably welcome, but the problem is that sufferers do not necessarily get the required level of care because demand is managed by stopping the supply. That is the problem with a capped budget. Free personal care is not really a panacea for families seeking the care that their relatives need.
Order. Before I call Dr Whitford, may I ask that she bring her remarks to a close?
Okay. Free personal care is obviously not a panacea, but some families have someone coming in four times a day to offer support and people of different levels are coming in. The request for such care is made through the general practitioner, so a health assessment is made. As I said when I first stood up, Scotland does not have a magic answer, but we are coming at the issue from a different angle. Some of what is being done in Scotland can be shared and clearly the same goes for some of the things being done elsewhere.
Remembering who these people are and helping them to remember is important. The volunteer projects involving music and football to help people find themselves are really important. We must remember that they are still in there. They are still a person, and they require our sympathy and to be able to keep their dignity.
It is a pleasure to serve under your chairmanship, Mr Davies. I congratulate the hon. Member for Charnwood (Edward Argar) on securing this debate, on his excellent speech and on how he approached the debate, engaging and seeking consensus. I look forward to working with him over this Parliament as co-chair of the all-party parliamentary group on dementia.
I speak today not only the behalf of the Opposition, but as someone with personal experience of caring for someone with Alzheimer’s disease. My mum was 64 when she was diagnosed and I provided her care. I have spoken about it in the past, but it has certainly informed my view and led me to want to champion the Alzheimer’s Society and working together on this issue.
I will keep my comments brief because much has already been said about the challenge that our society faces. As has been said, 850,000 people are currently living with dementia in the UK, and the number is set to reach 1 million by the end of this Parliament. It is a distressing disease because of the impact not only on the person living with the condition, but on the carers, as it affects relationships with loved ones. I was lucky that my mum was in good health for much of the time, but the first time she could not recognise me really did have an impact.
As has been mentioned, the previous Labour Government made much progress on dementia. They launched the first ever national dementia strategy, which began the process of establishing memory clinics, providing better training for staff and improving the quality of dementia care for people in hospitals. They appointed the first national clinical director for dementia and commissioned a quality standard for dementia from the then National Institute for Health and Clinical Excellence. The current Government have built on that work, and I am delighted to support the Prime Minister’s challenge. There has also been welcome progress on the number of people with dementia receiving a diagnosis. However, I want to mention three areas where we need to push for more progress.
First is awareness. People are often frightened of dementia because they think nothing can be done, but it is important to remember that, although there is currently no cure, people living with dementia can live well with the right level of support. Like so many who spoke in today’s debate, I have been a big supporter of the Dementia Friends programme. Politicians have a responsibility to lead by example in this area, and I was pleased to see that the Minister recently underwent her training.
A year ago!
Fantastic. As the first MP to become a Dementia Friends champion, I ran a Dementia Friends session in Parliament to launch the “dementia-friendly parliament” last year.
We have also heard about the importance of involving young people. A lot of work has been done in my constituency, where, for example, the youth council has received training to be Dementia Friends. Making Oldham a dementia-friendly community is a priority of mine and, after starting with just a few hundred, we now have 2,000 Dementia Friends. I am proud that Oldham is one of more than 100 communities across the country that is working towards becoming dementia friendly, but we need to go further. Our ambition should be to ensure that everyone living with dementia feels included in their community and feels that they have control over their lives.
Secondly, we need improvements in the quality of care and support for people with dementia and their carers, which, as we heard today, is just not good enough in some parts of the country. Too often, people with dementia receive no care and their families get no support. Over the last Parliament, cuts of £3.5 billion were made to adult social care services, which have had a real impact on people with dementia and their families. Some 87% of social services departments can provide care only for people with critical or substantial need. For example, I called on a woman in her late 70s in the middle of the afternoon during one of my regular door knocks. She opened the door, looking dishevelled and confused, and had an empty bubble pack of medication in her hands. Her first words to me were, “I don’t know what I have to do.” I was able to call the pharmacy and to get support for her, but what if I had not been there? She obviously needed support and was not getting it.
Councils are doing their best to save money through changing the way that care is provided and working more closely with the NHS, but the scale of the cuts is forcing many to cut the support that would have helped to keep people out of hospital. As a consequence, more and more people with dementia are ending up in hospital, with some estimates suggesting that one in four hospital beds are occupied by someone with dementia. The NHS has also seen delayed discharges from hospital hit a record high in recent months, costing some £526 million since 2010. Once people are in hospital the support is simply not in place in the community to enable them to return home.
In 2009 the then Health Secretary, my right hon. Friend the Member for Leigh (Andy Burnham), called for national care services to be developed and to be provided on the same basis as for health. He has repeated that call. We will not be able to improve the quality of dementia services until we find a solution to the funding crisis facing social care.
At a meeting with the Saddleworth carers group in my constituency, I listened to predominantly elderly carers describing the hundreds of hours of often back-breaking work that they were providing for their loved ones. They did that because no support or respite was available. How are they meant to cope? Given that the Government have delayed the implementation of the care cap until 2020, or possibly later, and have gone back on their promise to raise the £118,000 assets threshold before someone has to pay for their own care, will the Minister tell us what assessment has been done to estimate the number of families with a family member with dementia who will be affected by that between now and 2020? In addition, is the Minister committed to the Alzheimer’s Society proposal to drive up the quality of residential care for people with dementia? If so, how is that being monitored, for example in the use of anti-psychotics?
My final point is about research. Research for a cure for dementia provides hope for people in the future. In addition, however, we must focus research into the cause and prevention of the different forms of dementia, and into how we can best care for people who are living with dementia today. The Government’s commitment to double dementia research by 2025 is welcome, but we are starting from a low baseline. Other countries have shown much greater ambition.
Last month Alzheimer’s Disease International called for a significant upscale in research support, given the 35% increase in the global cost of dementia since 2010. It estimated that by 2018 the cost will have increased to $1 trillion, equivalent in size to the 18th largest economy in the world. Will the Minister report on the progress made, as has been asked by other Members?
Order. I have to ask the shadow Minister to bring her remarks to a close.
We need to give hope to people who are experiencing dementia and to their families.
We have had some excellent contributions this afternoon. I will be unable to answer the questions of the shadow Minister, the hon. Member for Oldham East and Saddleworth (Debbie Abrahams), because unfortunately she took several minutes of my time, but I will do my best to respond to the points made by my hon. Friend the Member for Charnwood (Edward Argar), who brilliantly introduced the debate. He follows a distinguished predecessor in the health field and Charnwood has clearly found another health champion. It was a terrific speech and there were excellent contributions from other Members.
Dementia continues to be an absolute priority of the Government. Several hon. Members have spoken about the devastating impact of the disease, which has touched many families in our country, mine included, and I suspect those of many others in the Chamber and of those listening outside. I will not outline the scale of the challenge, because others have done so eloquently, but it is huge and it is local, national and global. This is the first debate since the launch of the Prime Minister’s challenge on dementia 2020, which builds on the success of the challenge that ran between 2012 and 2015, as others have said. We are well aware that it is only a building block and that we need to carry on and to go further. I welcome the chance to refresh our commitment to going the extra mile, for which Members have called.
We have good news on diagnosis and have made significant progress. More people than ever before are receiving a diagnosis. Without it, they would not receive the support that they need. More than 400,000 people now have the opportunity to gain access to the care and support that they require. Almost 45,000 more people have received a diagnosis of dementia than would have done had earlier trends simply continued, so that is 45,000 more people getting access to support for living well with dementia. The diagnosis rate was increased by 20 percentage points from the baseline in 2010-11 and is now around 60%. We expect to meet our target this year. I will reflect on the challenge to me to achieve ever higher diagnosis rates.
On research, we are committed to tackling dementia through our research efforts at home and abroad. I was delighted to see how many people are volunteering to participate in dementia research. We have had really good news on that recently. Through Members and to those beyond the Chamber, I thank all those people for taking part in such vital programmes.
We are already doubling research spending on dementia. That money supports world-leading major research programmes and significant investment in infrastructure. Globally, the UK is leading the way and working with partners around the world to tackle dementia, boosting investment and accelerating research through the $100 million dementia discovery fund. We obviously have a spending review coming up, but we look forward to continuing that leadership and looking at how it can be provided—potentially through an international institute on dementia research, about which we will be talking to the Department for Business, Innovation and Skills after the spending review. I hear the call, however, and welcome the contribution of my hon. Friend the Member for North West Hampshire (Kit Malthouse).
Many Members spoke about the need to raise awareness. The job has begun, but it is by no means complete—it is an ongoing challenge to build awareness of dementia throughout our society through individuals and communities. In the Chamber this afternoon we have heard some fantastic examples of people with local groups and communities who are becoming more dementia-friendly. The first Prime Minister’s challenge set a target of 20 communities; I am delighted to say that we are exceeding this with 115 communities. My hon. Friend the Member for Wealden (Nusrat Ghani) spoke about one of hers. As she highlighted, there is a great range, from cities to villages and from urban to rural. I congratulate all those who are involved in that public-spirited initiative, but we need to go further. I ask any Member who wants information about how to do that and champion it in their area to please contact me, and we will put them in touch with the Alzheimer’s Society, if they are not already. We have always had good support on that.
It was great to hear tribute paid to the emergence of dementia-friendly cafés and initiatives such as Singing for the Brain, both of which I have seen in my local area. It is great to be able to praise the people leading those initiatives. My hon. Friend the Member for Tonbridge and Malling (Tom Tugendhat) might be interested to know that one of the groups set up as part of the dementia-friendly communities strand of the Prime Minister’s dementia challenge is looking specifically at transport. He made a good point on that. It was also good to hear about the work of the local dementia café in Syston, run by the Alzheimer’s Society. I, too, echo the tributes made to the volunteers, who do such work in all our constituencies. We also provided support to the July 2015 launch of a new standard developed by the British Standards Institute, which encourages more communities to recognise what they can do to be dementia-friendly.
The first Prime Minister’s challenge included a programme to create 1 million dementia friends by March 2015. I am delighted to say that we achieved that target in February, but we want to build on that, and Members of Parliament have a great role to play in leading such work, as has been said. We are pleased that the Alzheimer’s Society has committed to reaching a total of 4 million dementia friends in coming years.
We have invested £50 million to support capital projects in health and care settings, designed to improve the environment of care for people with dementia; nearly £4 million of that was invested in the east midlands during the previous Parliament. Some great work led by Loughborough University on how we can give guidance on dementia-friendly environments is helping us to assess care environments. Some of that work has been led by patients, and there has been an encouraging start, with nearly three quarters of healthcare sites becoming dementia-friendly, including acute wards and hospices. Again, though, we want to build on that and see all such settings becoming dementia-friendly.
More than 500,000 of our dedicated NHS staff have received dementia awareness training so that patients with dementia can be better cared for. Much has been said about the vital role of social care and the people who work in it, and we recognise that key role—the hon. Member for Stockport (Ann Coffey) brought that point eloquently to life. More than 100,000 social care staff have been trained in better supporting people with dementia. Since April 2015, newly appointed healthcare assistants and social care support workers, including those supporting people with dementia and their carers, have undergone dementia training as part of their care certificate. That is encouraging, but, again, we want to build on it.
Post-diagnosis support is an area to which I give enormous consideration. It is going to be one of the big, important challenges in rising to the Prime Minister’s challenge in the next few years. My hon. Friend the Member for Charnwood is right to push us, because these are the practical ways in which we can make a real difference to people’s lives. We are committed to working on that and making sure that we provide advice and information. He mentioned Admiral nurses—again, a great example of what can be done.
There is a great deal to say about investment in future integration. On the vanguards, more are addressing the issue than perhaps my hon. Friend thought, given his concerns; perhaps we can discuss that after the debate. I liked his idea of pushing more Departments on the Dementia Friends programme and I am happy to take that up with the Cabinet Secretary to see whether we can do more there. The revised NICE standard is expected during 2017.
The Government’s commitment to the challenge is undimmed. I welcome the fact that so many new Members have been at this debate to speak about the issue. Seeing their passion to make further progress is inspiring in itself, and we will make that progress.