It is very warm in the Chamber today. Hon. Members may want to remove their jackets: please feel free to do so—I would not want anyone parboiled. Before I call Debbie Abrahams, who will move the motion in her own time, I ask Members to prepare, because of the interest in the debate, to make speeches of about five minutes. We shall keep that informal, but hopefully we will be able to get everyone in.
It is lovely to see you in the Chair, Mr Paisley. I thank the Backbench Business Committee, which granted the debate, and I want to recognise my hon. Friend the Member for Cambridge (Daniel Zeichner) as its co-sponsor. I also thank the Alzheimer’s Society, which provides superb support to the all-party parliamentary group on dementia, and the parliamentary digital team for promoting the debate. We hope to hear the views of many people from across the country on the recommendations in the report we shall discuss.
The subject of dementia and people living with dementia is particularly close to my heart. As many Members will know, my mum was diagnosed with Alzheimer’s disease at 64 and I was one of her principal carers. Having had that caring experience and seen some of the issues my mum faced, I wanted to raise awareness about dementia and the many different brain diseases that cause it. As many will know, dementia is now the leading cause of death in the UK, having overtaken heart disease and cancer. It is estimated that 850,000 people in the UK have a dementia, and Alzheimer’s disease is the most common. That is expected to increase to 2 million by 2050. Globally, there will be 152 million people living with dementia by 2050—a 204% increase. If there is anyone who does not now know someone with dementia, they soon will.
There is already much work under way at the UK Dementia Research Institute, where there is a search for programmes to identify people at risk of different dementia types and prevent them from contracting the disease, as well as for treatments and cures. In spite of the commitment by the former Prime Minister, David Cameron, to invest in dementia research, it still receives only one tenth of the research funding that cancer receives. However, there is also a need to invest in dementia research that could improve the lives of people affected by dementia today. I have campaigned with many others to raise the issues affecting people living with dementia, including becoming the first MP to be a Dementia Friends champion, working with Oldham Dementia Action Alliance to develop a dementia-friendly Oldham and Saddleworth, and undertaking various all-party group inquiries on how to improve the quality of life of people living with dementia.
The report from our latest inquiry, on dementia and disability, was launched last week. More than 2,500 people affected by dementia responded to our call for evidence—one of the largest responses to any all-party group inquiry. What the respondents had to say is very important. According to the Equality Act 2010 and the United Nations convention on the rights of persons with disabilities, dementia is a disability. As one family carer put it:
“If this isn’t a disability then I don’t know what is.”
However, the all-party group was told that society is lagging behind in that understanding and failing to uphold the legal rights of people with dementia. Evidence presented to the inquiry revealed that, across the country, the disability rights of people with dementia are not being upheld. Shockingly, 98% of the survey respondents thought that people living with dementia are treated differently from people with other health conditions or disabilities. They believe that that is due to the hidden nature of dementia, and the stigma that surrounds the condition. That is simply not good enough, and we need to do more.
I congratulate my hon. Friend on obtaining the debate, and those who supported her. I hope she will touch on the cost of care. The cost of looking after people with dementia is astronomical, as it is with care generally. I hope she will also touch on progress with dementia research.
I thank my hon. Friend, who anticipates me. I shall certainly talk about social care in relation to people living with dementia and their carers. My speech is focused on our inquiry report, but other hon. Members may want to touch on progress being made in research.
A central finding of the inquiry is that the public, employers, organisations, Governments and public bodies need to do more, and need to recognise the rights of people with dementia. The inquiry also revealed that a range of societal barriers prevents people with dementia from living independently. Action needs to be taken across a number of key areas to ensure that people with dementia receive the protections and safeguards provided by legislation and convention. The key areas that were identified as having a direct impact on people’s daily lives include employment, social protection, which is also called social security or welfare benefits—I consider that a misnomer because most people who receive so-called welfare benefits have contributed, so they are an entitlement, not a benefit—social care, transport, housing and community life.
On employment, the importance of work in giving people a sense of purpose, self-esteem, status, companionship and income was raised. Work can also provide a routine. Without it, people can feel a loss of identity and sense of purpose. One person with young onset dementia told us:
“I applied for so many jobs and I just got rejections. I used to lecture at a university and now I can’t get a job collecting trolleys. Any job is worthwhile. Not having a job destroys self-esteem.”
At the launch of the inquiry report last week we heard of a woman who had worked in a Government Department and had been diagnosed with early onset dementia. She became ill because of the condition, was then disciplined about that and, ultimately, was forced to take ill-health redundancy. I know that the Minister will be as concerned as I am about that disgraceful position. If Departments are setting out how we should lead, we must make sure we have our own house in order.
There needs to be more awareness among both employers and employees of the employment rights of people with dementia. People need to feel empowered to tell their employers about their diagnosis and employers should feel supported in fulfilling their responsibility to make reasonable adjustments so that people with dementia can continue to make a meaningful contribution in the workplace. The Government have a hugely important role to play, by providing guidance and support for employers. The Access to Work programme could go some way to addressing the unmet needs of people with dementia in relation to employment. However, as I know the Minister recognises, that is a small pot of money, which currently supports only about 35,000 of the 4 million or so disabled people who are fit and able to work. We need to make sure that that is extended.
In relation to social protection, people raised issues about the extra costs associated with living with a disability. Access to extra financial support can provide a lifeline for people with dementia and help people to continue getting out and doing the things they enjoy. One of the key challenges for people affected by dementia is knowing what financial support is available to them. One family member told the all-party group that they felt that
“people with dementia are effectively ignored by the disability benefits system.”
People with dementia and their carers need access to more support to enable them to know what financial help they are entitled to and how to make a successful claim. The Minister knows my views on both the fit-for-work and personal independence payment assessments. Until those assessments are scrapped, people with dementia deserve to be assessed by professionals who understand the condition, and they should not have to undergo unnecessary reviews or reassessments, as currently happens.
Assessment processes need to be clear and appropriate for people with cognitive impairments. That is why we are calling for the Government to mandate the Department for Work and Pensions to convene an expert group to review access to social protection for people living with dementia and their carers, recognising their specific needs. This group must include those who are experts by virtue of their own lived experience. The Government should also mandate the DWP to exempt personal independence payment claimants below the state pension age and with a dementia diagnosis from reassessments, which are unnecessary and cause a lot of distress for people living with dementia and their families.
A further key issue was social care. The inquiry received considerable feedback about inadequate or inaccessible social care for people affected by dementia living in England. There are many ways to improve the lives of people with dementia, but it is difficult in the current context of the well-documented social care crisis across the country. It is now recognised that that social care crisis is a dementia crisis. We need to fix the broken care system, and I am proud to support the Alzheimer’s Society’s “Fix Dementia Care” campaign. I know the Minister is eager to publish the Green Paper as soon as possible, and I urge the Government to recognise that.
In the context of social care reform, I will mention the Alzheimer’s Society’s campaign for a dementia fund. The system of dementia care in this country is in urgent need of reform and extra investment. In May, I tabled early-day motion 2360 in support of the campaign, calling for a financial injection into the social care system in the short to medium term, allowing for greater provision of safe and quality care, longer visits and savings to the NHS. My EDM now has the backing of more than 100 MPs of all parties, and I know that thousands of Alzheimer’s Society campaigners have written to their own MPs as well. I would welcome a commitment from the Minister to look at the proposal, and her support in getting the Government to include a dementia fund in the forthcoming spending review, to end the unfairness for people with dementia.
Another key area is transport. Access to public transport can have a huge impact on the lives of people affected by dementia, helping to reduce loneliness and social isolation by linking someone to their community and friends, and providing links to essential services such as necessary respite care. Access to public transport is therefore critical to maintaining someone’s quality of life. However, accessing transport can be very challenging for people with dementia. We heard many stories of how poor or inaccessible transport is, preventing people with dementia from participating in society, despite rights to accessible transport being enshrined in the Equality Act 2010.
Our report stresses the importance of reviewing any changes to bus and community transport services in the context of the public sector equality duty, to ensure that reasonable adjustments are made to enable people with dementia to continue to use public transport. Local authorities have a huge role to play here, and I hope that they will take steps to support people living with dementia in their communities.
On housing, the inquiry found that people with dementia are frequently being denied their right to live independently in their own homes, where they are able to make their own choices. It is important that people with dementia are supported as much as possible to stay as long as possible in their own home or to access suitable supported housing. People with dementia have the right to personal choice over where and how they live. We believe that people living with dementia must have access to adaptable housing, trained home care staff, and specialised supported housing schemes.
The final area is community life. The evidence supplied to our inquiry reaffirmed the importance of supporting people with dementia to continue to lead full and independent lives. That means creating communities where no one is excluded or has to face dementia alone. The all-party parliamentary group praised the work of the Dementia Friends programme, which helps to raise awareness of the condition and has created almost 3 million Dementia Friends in England, Wales and Northern Ireland—5,000 of them in my constituency of Oldham East and Saddleworth, a fact that I am very proud of.
A particularly relevant recommendation of the report is for Westminster to become the world’s first dementia-friendly Parliament, including ensuring that the parliamentary estate is a safe and welcoming place for people affected by dementia to work and visit. I have met a number of people today who are visiting Parliament; I hope they will be able to report positively on how they have been received today.
Our report is wide-ranging and covers a number of different issues that need to be addressed if the disability rights of people living with dementia are to be realised. Over the coming months, the all-party parliamentary group on dementia will work with the Alzheimer’s Society and other partners to turn the report’s recommendations into reality. That has the potential to have a huge impact on the lives of people living with dementia and their carers, and I hope that everyone in the Chamber today and beyond will offer their support.
It is a pleasure to serve under your chairmanship, Mr Paisley. I thank the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for securing this important debate, in conjunction with the hon. Member for Cambridge (Daniel Zeichner) and the Backbench Business Committee.
Hon. Members should be dismayed to learn that, according to a recent survey, 98% of the 2,521 respondents felt that those with dementia were treated differently from people with other health conditions or disabilities. Some even found that employers would not make reasonable adjustments to the workplace. Those respondents believed that they were discriminated against, facing unnecessary stigma and often negative attitudes. It is a worrying statistic given that, apparently, 850,000 people in the UK live with dementia. Indeed, 70% of care home patients live with the condition.
Media coverage of the condition tends to occur only when it befalls a prominent person in public life, when relatives have the courage to publish their experiences, as the TV presenter Sally Magnusson in Scotland did in relation to her mother, or when a member of the public sadly goes missing and the police issue an urgent appeal for help in locating them. It is important that we raise wider and more regular awareness of a condition that appears to be on the increase throughout the United Kingdom.
I apologise for being late to this debate. Last November, my father passed away. He was a sufferer from dementia and, while he got fantastic care, we found as a family that there was a lack of staff with the experience to diagnose dementia, because there are different stages and diagnoses. Does the hon. Gentleman agree that one area that is forgotten about is young carers, who have to dedicate a lot of their time to looking after their parents while still keeping up their studies? We seem to forget about them.
The hon. Gentleman is right that we often seem to overlook the young carers. In my family, we have experience of hosting my mother-in-law. I was very fond of her, but we had two or three months of hosting her, and despite having two daughters who are nurses, what a challenge that was in my life and that of my wife. We thought we knew about dementia, but we knew nothing about it until we walked for several months with my mother-in-law, who I was very fond of.
When I served as a councillor in South Ayrshire, one of my colleagues, Councillor Hugh Hunter, and others were active in ensuring that the needs of dementia sufferers and their carers were to the fore. In his council area, in 2016, a dementia-friendly project was launched, with the laudable aim of building a community that supports people with dementia, enabling sufferers to remain in their community for as long as practicable and reducing the stigma. Indeed, in the constituency of the hon. Member for Central Ayrshire (Dr Whitford), which borders mine, is the Carlton Hotel, one of the first in Scotland to provide a dementia-friendly bedroom. I think she and I would both agree that that is delightful, and I give credit to that hotel and others that do the same.
In 2015, the UK Government launched the Dementia 2020 challenge, a vision for dementia care, support, awareness and research, which includes awareness training for NHS and care staff. I understand research spending is around £60 million a year to 2020, but not beyond. Four years on, I wonder whether the Minister might provide us with an update and an outline of what the future might hold for those with dementia and—equally importantly, as was said earlier—their carers?
In particular, I am sure sufferers and carers would be grateful for more detail on the proposed Green Paper on a new social care policy, especially the Alzheimer’s Society’s desire for a dementia fund to afford financial support for the very real additional costs associated with dementia treatment and care. An update on the Accelerated Access Collaborative introduced last year, which enables patients to benefit from rapid uptake products, breakthrough medicines and technologies with the greatest potential to change lives, would also be welcome. I know an update would be gratefully received by many of my constituents and others elsewhere in the United Kingdom.
I very much welcome the fact that mental capacity legislation should enhance safeguards against deprivation of liberty and ensure that those living with dementia have a person to advocate on their behalf. However, the Government could further assist by making form filling easier and considering whether there is truly a constant need for reassessment, given that dementia is sadly a progressive condition for which there is currently no effective cure.
All our Governments and other organisations must ensure that those living with dementia are able to do so with dignity, respect and, most importantly, compassionate care, to remain safely independent for as long as is reasonably practicable. The Alzheimer’s Society’s mantra that everyone affected by dementia should feel part of—not apart from—society sums the situation up. It is to be commended for encouraging more than 2 million people to sign up as Dementia Friends, and its informative website is truly well worth a visit.
During Dementia Action Week last month, I belatedly became aware that some stores in Ayr—a town in my constituency—such as Specsavers, have several Dementia Friends on their teams. Hopefully this small step this will be a growing trend in retail, hospitality and, equally importantly, transport throughout the UK, to extend that hand to those living with dementia who need that wee bit of extra help.
It is a pleasure to serve under your chairmanship, Mr Paisley. I thank the Backbench Business Committee for granting this debate. It is an honour to follow my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams), who so expertly laid out the issues. I will say a little bit about social care and then move on to research.
Some 1,179 people live with dementia in Cambridge—around 1% of the constituency population—meaning that thousands of my constituents care for or know a close friend or relative with dementia. My hon. Friend touched on some of the social care issues. It seems hard to deny that we have a crisis in social care. In March 2017, the Government said they would publish a Green Paper on ensuring that the system will be sustainable in the long term. However, two years on, and after many delays, Ministers have still not given a date for when it will be published.
I understand that 400,000 fewer older people receive publicly funded care than in 2010. With local authority budgets cut by 49.1% since 2010, including £7 billion lost from adult social care, and a further £1.3 billion to be cut in 2019-20, it is hard not to conclude that the situation for many of those living with dementia, and for their families, has been made much harsher and more difficult.
Alzheimer’s Research UK has campaigned for more money to be invested into research, so that with new treatments we can really change the lives of those who have dementia. As we all know, research has revolutionised the ways we treat, cure and prevent diseases such as cancer. There is no reason why that cannot be the same for brain diseases such as dementia. New treatments would also ease pressure on our healthcare and social care services, improving lives and saving public service resources. Public donations have allowed Alzheimer’s Research UK to invest £100 million over the last 20 years to drive forward its research, but that funding alone does not allow it to further explore emerging fields.
However, when we do invest in dementia research, look at what we can achieve. Alzheimer’s Research UK’s Drug Discovery Institute in Cambridge couples the deep disease knowledge and biology expertise of the academic community with high-quality, innovative drug discovery technologies. More than 100,000 combined hours have been committed to drug discovery by 30 new staff. The institute is currently investigating 10 new potential drug targets in its own work or through collaborations, has generated 12 new internal collaborations at the University of Cambridge and has attracted nine new partners from both the private and the academic sectors.
In addition to the institute, the Cambridge Network Centre, launched 20 years ago, has grown to include 2,200 dementia researchers across the UK. It has helped researchers to buy cutting-edge technology to carry out their research, supported grant applications and fellowship applications and enabled PhD students to buy equipment such as virtual reality technology to further their research. I suspect I am not the only one to have seen the virtual reality dementia simulation and met Helen Davies when Alzheimer’s Research UK was in Parliament. I—like others, I suspect—found it extremely interesting and slightly surreal, but also very impressive at explaining the effects of the disease.
While £269 million is invested in cancer research, only £83.1 million is invested in dementia research—just 0.3% of its total cost to society. Alzheimer’s Research UK is calling for the Government to increase that to just 1% of its total cost, which would unlock the resources needed to really cement the UK as the world leader in dementia research and to make real breakthroughs. I very much hope that the Minister will commit to discussing that with her colleagues in the Department for Business, Energy and Industrial Strategy and the Treasury—even possibly one or two Conservative party leadership candidates, for whom money suddenly seems to be no object—to ensure that we make the progress that we all need.
It is a pleasure to serve under your chairmanship, Mr Paisley. I thank the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for securing this important debate, and the Backbench Business Committee for granting it.
Both my grandmothers suffered with dementia, so like many here today I have seen at first hand how people slowly become a shadow of their former selves. We are all living longer than before, but with the gift of more time comes complex illness and disease. It is expected that, by 2020, more than 1 million people across the UK will have dementia, with one in five people aged over 90 suffering from it. Chichester has a significant elderly population, and we therefore have more sufferers than the national average.
We know that this area of health will only become more of an issue in the coming years, so policy around it needs to be robust, for both patients and their families. In 2015, the Challenge on Dementia 2020 was launched, setting out the vision for how dementia care support, awareness, and research will be transformed by 2020. A big part of this is awareness raising, so people can spot the signs in loved ones. I and my team are registered to take part in Age UK’s dementia awareness training, and I am sure that many people across the country are doing the same. More people are receiving a dementia diagnosis than ever before, helped by the fact that more than 660,000 NHS staff have received dementia training. That is important, because the earlier the diagnosis, the more time patients and their families have to prepare for what is to come.
From my own experience, I know that dementia is a very changeable disease, with good days and bad. Sometimes I would sit with my nan and she would be as sharp as a pin. Sadly, on others, she would barely recognise me. However, there are some things that can beat dementia, and in her case it was politics. I will never forget visiting my nan, Joan Roberts, after she moved out of her council house and into a local care home in Huyton. I had just finished my first election campaign, contesting St Helens South and Whiston in 2015—as a Conservative—and wanted to show her my election leaflets. At the time, she was in the advanced stages of dementia. She looked at the photos and admired the different outfits I was wearing, but all of a sudden her face went as black as thunder when she realised I was standing as a Conservative. “That is not my party”, she exclaimed. I said, “Goodness, nan; you can’t remember what you had for breakfast but you still remember that you’re Labour.” I went on to reassure her that we had never agreed on politics, and she seemed happy enough with that reply.
Having seen how this disease impacted my family, I think it is crucial that we bolster support for family carers. My constituent, Wendy, cares for her husband Richard and has had her life turned upside down. Her husband was her main support through life, and they used to talk about everything, but now they cannot. In contrast to much of their marriage, she now cares for him. Wendy, like many others, receives support from Sage House, our local dementia hub. The services it offers sufferers and their carers are a vital lifeline.
My family were very lucky in that regard. Coming from a large Liverpudlian family, we have a home-made support network, but not everyone is so lucky or lives close enough to each other. When my other grandmother, Jessie Gibson, was diagnosed with Alzheimer’s, her 11 surviving children, including my dad, drew up a 24-hour rota so that someone was always there to care for her in her home in Huyton. However, having 11 children who live within a few miles of each other is quite an unusual care option, and not one that I guess many of us have.
Sage House is an amazing local service. It is there from the earliest stages of dementia to end-of-life care. It has group sessions, which are important to people with dementia because loneliness often becomes more of an issue. Similarly, Chichester Lunch Club offers a fantastic support service that helps people to build and maintain relationships. Anyone who has loved ones with dementia will know how important it is for their wider mental health that they keep up social interaction.
Like most issues of the 21st century, there is always a technological advancement that can help. Chichester Careline is the only monitoring service in West Sussex providing telecare equipment to the most vulnerable in our society. Its services are becoming ever more invaluable, because they are often used by people in the earlier stages of dementia. People with dementia often get confused, and on occasion get lost; they sometimes wander out of their house. My nan used to go out looking for her two daughters, who she thought had not come home for the evening, even though they were in their 60s and 70s. Careline operates a “Mindme” service. That means that if a person becomes lost or disorientated, they can be located through a website, which is monitored by their family, friends and carers as well as Chichester Careline. That service is available 24/7, 365 days a year. The technology can now go further for people who are prone to wandering off. An imaginary ring fence can be installed around a location, and that sets off an alert if a user crosses it.
Dementia is an illness that has touched my family and will affect more and more families up and down the country. A key concern of mine is social care—for those with dementia and for the elderly more generally. I believe that we need a transformative adjustment in policy that genuinely offers a sustainable, integrated model of care. At this point, I urge hon. Members here today who have not already done so to join the all-party parliamentary group on social care, which I set up with the hon. Member for Sheffield, Heeley (Louise Haigh) and in which we are working to be a voice for the industry and its professionals to improve the status of that vital work, on which many people up and down the country rely. It is our great responsibility to care for those who cared for us. We need to get this right. One day, and sooner than we think, we will be the ones in need of that care.
I am delighted to participate in this important debate on improving the lives of people with dementia. I begin by extending my thanks to the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for securing the debate, and by applauding the excellent work in my constituency carried out by Quarriers dementia befriending service—I met people from the service only a few weeks ago—and its wonderful volunteers, who work so hard and do so much to improve the lives of those with dementia.
I must declare an interest in the debate, as my husband’s mother—my mother-in-law—is living with dementia. Watching an older person—I appreciate that we have heard about cases of younger people being diagnosed with this disease—make the descent from the person they used to be into someone who is so far removed from their former self is really distressing. My mother-in-law’s name is Iris Gibson, and before the illness took hold she was the longest serving SNP councillor on Glasgow City Council at the time; she was a woman who was a keen runner, having participated in marathons all over the world; she was a woman who was never home but was always out at meetings or events in her council ward, or representing Glasgow City Council in her role as bailie at official functions; and she was a woman who was perfectly comfortable exploring foreign lands on her own when she took time for a holiday. Over an extremely short period of time, her children and I have watched her go from being all those things to being a woman who is easily confused, who is not always able to recognise her grown-up children and who has lost all sense of herself. If she could have seen, and if she had known, how her elderly years would play out, she would have been distressed beyond measure at the prospect. Her grown-up children, twins Kenneth and Janis, find her descent into dementia very distressing to see, as might be expected. This illness is cruel beyond words, and if anything can be done to improve the lives of those who are living with the disease and the lives of their families—we cannot forget their families—we need to do all in our power to deliver that.
Iris has had to surrender her own home and lives in a care home in Largs called Haylie House. She seems happy there, but the disease has robbed her of decades of memories. She appears to have forgotten so much of her life before dementia, which was a life she lived to the full. Sadly, that story of dementia can be told by every single person who has watched a precious family member fall victim to this disease, be robbed of the recollections of a life lived to the full in glorious colour and have that replaced by blank, empty spaces, where decades have simply vanished and are beyond the grasp of the person struck by the illness.
In the UK, 850,000 people are living with dementia. By 2025, which is not far away, that figure will rise to more than 1 million, and by 2050 it will rise to more than 2 million. I am concerned about how we protect those living in our communities who have this disease—they may not even have been diagnosed. Too often, as we have discussed in this place, such individuals are seen as rich pickings by those who seek to part them from their savings. As a society, we need to put structures in place to protect them, in every way. Some financial institutions have put measures in place to protect our older, vulnerable people. I am referring to measures such as monitoring their bank accounts and having a few days buffering the removal of unusually large amounts from their account to help to safeguard them against fraud.
What is really needed, as we have discussed in this Chamber before, is a legal duty of care from the business world and from the state towards older people—especially those with dementia—who need that extra layer of protection in a world where rogues and thieves are creative and cunning and older people, even those with dementia, are isolated in their own homes without sufficient support. That protection must be put in place. In my view, it should be a legal, statutory duty for all financial institutions to deliver that protection. Those living with dementia deserve nothing less.
As our population ages and people live longer, there are huge cost and care challenges to face in terms of how we look after our older people, and especially those who live with this cruel disease. Those challenges are faced by societies right across Europe and, indeed, the world, and we must do all we can to meet them, despite the difficulties. The Scottish Government are working hard to improve dementia care and have published a three-year dementia strategy, but one challenge, to which money is perhaps not the answer, is recruiting and retaining care staff, whether the care is carried out in an older person’s home or in a care home. Integration of health and social care services allows for more joined-up delivery of services, but the story cannot end there. It is the case that 43% of the Scottish Government’s entire budget—43%—is spent on health. That is before one penny is spent on schools, housing, roads, local authorities or anything else. The costs of social care can only grow and will continue to be hugely challenging, and we must continue to work to meet the challenges. The Scottish Government are looking very carefully at a report from Alzheimer Scotland called “Delivering Fair Dementia Care For People With Advanced Dementia” and some of the issues that it raises about continuing to work to improve the lives of those living with this condition.
I echo many of the comments that have been made today about the need for continuing and improved research into this condition. Given the numbers affected and the cruel erosion that this illness inflicts on those struck down by it, caring for those in our society who are living with dementia will never be easy. That will always be challenging, not least because of recruitment and retention challenges. We need to recruit and retain staff to carry out the caring that is required—that is very difficult—and we will need more people to carry out those caring roles. We can all agree that our older people must have the care and support that they need throughout this shocking illness. We must not lose sight of that. Our older people with this illness need us to get this right.
It is a great honour to serve under your chairmanship, Mr Paisley. Like other hon. Members, I thank the hon. Members for Oldham East and Saddleworth (Debbie Abrahams) and for Cambridge (Daniel Zeichner) for bringing this timely and critical debate to the Chamber. We all feel very strongly about the subject. Many hon. Members have experienced, and have spoken movingly about, the impact of dementia on their own family. I am one of those, too. I will always remember the effect that dementia had on my grandfather in his final years. “Strict but fair” is probably the phrase used to describe that generation—my grandfather was a Royal Air Force officer and a teacher. I therefore have had personal involvement and have a personal interest in this matter, as so many do, and it is of course an emotional matter for many of us.
I am also married, as I have told the House before, to a music therapist. Many of my wife’s clients live with dementia. Classically, one always thinks of such people as being over 65, but that is not always the case. Increasingly, as my wife tells me, people who are much younger are affected, and it is those people on whom I would like to focus my brief comments.
I am a Dementia Friends champion. Many hon. Members are Dementia Friends and I warmly encourage any who are not to become one because of the education that it provides. One of the key lines and key lessons that dementia friend champions ask people to take away is that not everybody who is old has dementia and not everybody who has dementia is old. Although it is rare for younger people to have dementia, it is not that rare. About 5% of people with dementia are under 65, which is about 42,000 people—a significant number. I always ask people to become Dementia Friends because of the extraordinary positive message that comes from that programme.
We should say not that someone is suffering with dementia, but that they are living with dementia. I am glad to hear that everyone is using the correct phraseology today—I hope that I will continue to do so throughout my speech. Secondly, one can live well with dementia, and there are many things that we can do in our constituencies and public lives to ensure that everybody does so.
Young onset dementia—people under 65—is very difficult to diagnose. It is easily confused with stress or depression at that age, so the diagnosis is delayed. Even when someone is diagnosed, it is often hard to find care. Care is often fragmented and targeted at people who over 65, which is welcome where it is but, as the Dementia Friends programme shows, it is important that care is targeted to the individual’s needs.
That is why we are grateful for the Alzheimer Society’s Side by Side programme. I am honoured that YoungDementia UK is based in Witney. Its director, Tessa Gutteridge, is my constituent. It is a wonderful programme that seeks to bring together appropriate care for people under 65 who are living with dementia. For example, a social event for people in their 70s or 80s is not ideal for someone in their 40s who is living with dementia. It is much better if they are with people of their own age. YoungDementia UK have joined Age UK Oxfordshire and Guideposts Trust to bring together that specialised expertise and provide appropriate care and a support service targeted towards those with young onset dementia across Oxfordshire. We would like to see that throughout the whole country, which I know the Minister will think about in due course.
I am grateful to the hon. Member for Oldham East and Saddleworth for mentioning the report we have launched. I will not go through it in detail because she has done so fully. I would like to deal with the issue of employment. Under the Equality Act 2010, dementia is a disability. That particularly impacts those 42,000 people under 65, who may well be working. Their challenge is unique because they may themselves be carers for parents or children, they may be holding down a full-time job and they may have a mortgage to pay. It is particularly difficult. There is a stigma, as we know, around telling an employer that one is living with dementia.
There are difficulties in ensuring that the reasonable adjustments that should be made are made. That may be due to a lack of awareness of rights—perhaps employers do not realise that they should be making those reasonable adjustments. However, they may not realise what adjustments can be made. That is why I will give another unashamed plug for the Dementia Friends programme, which explains to people how it feels to live with dementia and what reasonable adjustments can be made.
The Government have an important role to play, which is dealt with in the all-party parliamentary group on dementia report. I ask the Minister to consider asking the Department for Work and Pensions to revise its guidance to employers about their responsibilities to support people who are living with dementia. It can cover reasonable adjustments, information on the Access to Work programme, and how to support employees with dementia. There is much more to do before we can call ourselves a society that is truly dementia friendly, but I know that together we can do it.
It is a pleasure to serve under your chairmanship, Mr Paisley. I congratulate my hon. Friends the Members for Oldham East and Saddleworth (Debbie Abrahams) and for Cambridge (Daniel Zeichner) on securing this important debate. I support their vision to make this Parliament the first dementia-friendly Parliament in the world. My staff and I have undertaken dementia-friendly training in my constituency office. It is important for us all to try to promote a more dementia-friendly society, sector by sector, institution by institution and, as mentioned previously, shop by shop.
It is great that so many Members want to participate in the debate—it shows how active this is in our personal lives and our communities. A wide range of issues has been covered so far. We have looked at the impact on loved ones who are living with dementia and their carers, financial assistance and protection for people living with dementia, research, social care costs, dementia-friendly shops and institutions, and therapies that can help people who are living with dementia, such as music therapy. I want to touch on the role that I think mindfulness can play in helping people who are living with dementia and their carers.
I co-chair the all-party parliamentary group on mindfulness with the hon. Member for East Worthing and Shoreham (Tim Loughton). On Tuesday 14 May, we held a conference in the Macmillan room on mindfulness in an ageing world, including those living with Alzheimer’s. We had 150 people attending, including 15 of the charities representing elderly people, including the Alzheimer’s Society.
We heard from experts from around the world and the UK who have been doing research on mindfulness, ageing and Alzheimer’s. Dr Antoine Lutz of the centre for medical research at the University of Lyon has won a €7 million grant for research into ageing well and Alzheimer’s. We also heard from Dr Lone Fjorback from Aarhus University in Denmark, where they have a week-long festival for mental health to look at the issues in a positive light. From the UK, we heard from Dr Trudi Eddington, who is a British research scientist at City University researching those currently suffering with dementia. We also heard from Dr Eric Loucks, the associate professor of epidemiology, and behaviour and social sciences at Brown University.
There is promising, early research out there. We used to think of the brain as set at the age of 25 and declining after that age. Now they have discovered neuroplasticity: how our brain changes size, function and shape over the course of our lives. Actions we take can encourage and discourage that. I ask the Minister and her advisers to assess that research, and particularly the research from the University of Lyon, which will be published later in the summer, and to meet officers of our all-party parliamentary group on mindfulness. I also ask the all-party parliamentary group on dementia and the Alzheimer’s Society to do the same. I pay tribute that APPG and the Alzheimer’s Society, and all of those who work to lessen the suffering of those living with dementia and their carers.
Thank you, Mr Paisley, for allowing me to speak in this important debate. It is a pleasure to serve under your chairmanship. I congratulate my hon. Friends the Members for Oldham East and Saddleworth (Debbie Abrahams) and for Cambridge (Daniel Zeichner) on securing this important debate, and commend their work on the all-party parliamentary group on dementia.
The scale of the challenge of dementia is well known, but it bears repeating. In the UK, some 850,000 people live with dementia. That is set to double by 2040. Of course, the figures do not capture the great many other people whose lives are touched by dementia, most obviously family, friends and carers. With so many people affected by dementia, we need a comprehensive and joined-up approach that supports people and their families as soon as they are diagnosed. This must involve health, social care, local government and voluntary organisations.
There is a great deal of innovation and good practice. We must do all we can to ensure that it is shared as widely as possible, which is why I entirely agree with the Alzheimer’s Society that we need a national strategy on dementia. Of course, it is hugely important that the strategy is fully funded. I urge the Government to consider that in the upcoming spending review.
When thinking about a joined-up approach, we should look at the lessons from the integrated personal commissioning pilots. IPC, a partnership between the Local Government Association and NHS England, aims to integrate healthcare and education services around people rather than organisations. It focuses on an individual’s needs, along with the available community and peer support, to build their confidence and skills for self-managing long-term conditions such as dementia. It seeks to offer choice and control to patients by widening access to integrated personal budgets and developing more options to help people to achieve their goals.
An important point that the Alzheimer’s Society has raised is the need to ensure that people with dementia understand the information that they receive. What is told to people with dementia is not always the same as what they receive and understand. Given the nature of the condition, it is vital that medical professionals and others continually ensure that people are empowered by what they are told.
That point leads me on to the need for improved education about Alzheimer’s and dementia. I pay tribute to the Alzheimer’s Society’s Dementia Friends initiative, which has spread awareness and has seen 2.75 million people—including me and others in my office—become Dementia Friends. However, there is still poor knowledge among much of the public and some medical and care professionals about Alzheimer’s, dementia and what can be done to help people with the disease.
The Department of Health and Social Care should consider implementing a dementia awareness campaign to increase understanding of the symptoms of dementia and the interventions and treatments that can slow the progress of the disease, and to support people with dementia and their carers to lead independent lives for as long as is appropriate. The Government must do more to improve standards within the social care workforce to meet the needs of people with dementia, including by funding training to tier 2 of the dementia training standards framework for everyone who works in adult social care or interacts with people with dementia.
Finally, I turn to the support that we must provide for carers. I pay heartfelt tribute to the many thousands in this country who care for people with dementia and a whole range of other conditions. Out of love, they provide selfless care and deserve our utmost respect. Much more help must be given to those who care for people living with dementia. Carers need a wide range of practical, emotional and financial support. For instance, in its recent report on dementia and disability, the APPG on dementia found that carers need more support to know exactly what financial help they are entitled to, as well as how to make a successful claim. Carers are also time-poor and have little energy and—dare I say it?—headspace left after meeting the demands of caring for someone 24/7. The agencies involved need to take a more proactive approach to ensure that carers can claim the financial help they need, because they are entitled to support for the care they give their loved ones.
As we have heard, the Government’s aspiration to make the UK the best country in the world for dementia care and support is welcome, but it must be met with action and funding to make it a reality. I hope the Minister makes those commitments today.
As always, Mr Paisley, it is a pleasure to serve under your chairmanship. I join colleagues in paying tribute to my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) for her leadership and for the compassion she shows in everything she does. I am a dementia friend because of her, having attended one of her workshops here in Westminster in 2016. I have since become a dementia champion and was asked by the Alzheimer’s Society to run its workshop for Dementia Friends at the 2016 Labour party conference to 80 colleagues and members, which was quite a challenge for my first workshop. I am incredibly proud to have played a very small role in training some of the UK’s 2.8 million Dementia Friends and sending them out into their communities to make them that bit more dementia-friendly. Once again, I pay tribute to my hon. Friend for her role in that.
This debate gives us an opportunity to evaluate where we are against the aspirations set out in the Government’s Challenge on Dementia 2020, but also to shine a spotlight on some of the good work that is being done at a grassroots level—not least in Halifax, thanks to some truly inspirational and passionate volunteers. As we have heard time and again, 850,000 people are living with dementia in the UK, a figure that is expected to double by 2040. One in 14 over-65s is living with dementia. If that is not an incentive to us all to do everything we can while we are able and empowered to do so, I do not know what is.
I recently wrote to older people in the Sowerby Bridge area of Halifax on behalf of the campaign to make Sowerby Bridge a dementia-friendly town, and invited them to a day of action to learn more and see the support available in their area. That campaign is driven by Shabir Hussain of Bluebird Care in Calderdale, who is a thoroughly committed community activist, along with Chris and June Harvey, who are truly dementia champions, and who run the wonderful Memory Lane Café for people with dementia and their carers. With their trustees and volunteers, Chris and June run pop-up cafés in churches and community centres in Sowerby Bridge and Halifax, with a dementia-friendly programme of games and crafts, information and support, cakes, music and conversation. Some 540,000 people in England alone care for those with dementia, and estimates suggest that one in three of us will be involved in caring for someone with dementia at some time in our lives, so a dementia-friendly environment that offers a thoroughly positive experience for all those involved in living well with dementia makes a massive difference to the regular attenders.
We also have a young onset dementia and Alzheimer’s group, or YODA for short, which was set up by Julie Hayden and provides support for younger people with dementia and for their carers and families. As we have heard, it is often overlooked that 42,000 people of working age live with dementia. Their requirements can be quite different. People diagnosed with dementia at that time of life usually present between the ages of 30 and 65 and are most likely in work, potentially with dependent children, older parents to care for or financial commitments such as a mortgage to consider. For that group, as other hon. Members have said, living well requires a different support package from that required for over-65s.
I would be remiss not to highlight the work of Inspector Neil Taylor of West Yorkshire police, who is a dementia champion and the chair of Dementia Friendly Todmorden. He has gone over and above in promoting best practice within West Yorkshire police and his local community—all credit to him. West Yorkshire police have introduced the Herbert protocol, named after George Herbert, a veteran of the Normandy landings who lived with dementia. The police and other agencies encourage family and carers to complete a form with useful information that could be used in the event of a vulnerable person going missing. The form includes vital details such as medication required, mobile numbers and places previously located, along with a recent photograph. In the event of a loved one going missing, the form can be handed quickly to the police to speed up the search and assist in supporting that person, who may be lost and confused when they are located. I recommend that all forces adopt such a protocol as soon as possible.
We are blessed with dedicated volunteers who have made Calderdale a better place to live with dementia, but what if Shabir, Chris and June, Julie, Neil and others like them were not there? The environment might be quite different without their leadership. How can we ensure that such work is supported and replicated elsewhere?
I give credit where it is due. David Cameron’s Government launched the dementia challenge in 2012, which sought to create dementia-friendly communities, with work led by the Alzheimer’s Society; drive improvements in health and care; and improve research, with a commitment that funding for dementia research be doubled to more than £66 million by 2015. Under Dementia Challenge 2020, as the programme was called when it relaunched in 2015, the Government committed to investing more than £300 million in dementia research and medical innovation.
It has been estimated that dementia costs the UK economy £23 billion a year, which is more than the costs of cancer, heart disease or stroke. With the numbers of people living with dementia expected to double by 2040, predicted costs are expected to treble alongside that increase. For anyone not yet won over by the human arguments for committing to research for dementia, the economic arguments speaks for themselves.
To be fair to David Cameron, I believe that he understood the issue. I hope the Minister can assure us that she will seek to make it a continuing priority for the incoming Prime Minister. However, there are still areas in which I would like to see things standardised across the UK to support people, particularly younger people, who live with dementia, as well as their families and carers. To have a dementia diagnosis in the workplace, with dependants or financial commitments, must be incredibly daunting, but with a renewed focus on that group, and with changes to our understanding of the support that those demographics need to live well, we can make a positive difference. I thank the APPG on dementia for its report “Hidden No More: Dementia and disability”, which calls, quite simply, for
“equality, non-discrimination, participation and inclusion.”
I wholeheartedly endorse those aims.
I thank colleagues for their immensely good self-imposed discipline, which will allow the Opposition spokespersons and the Minister 10 minutes each to speak.
I, too, pay tribute to the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for securing this crucial debate.
As has been said, the number of people suffering dementia in the UK is 850,000—I apologise, because I have already said “suffering” instead of “living with”, but many people are suffering. We talk about what is being done in pockets and what is being done well, but that is not happening for all those 850,000 people. Some of them are stuck in their houses, some are tutted at by people behind them in supermarkets and some are made to feel unwelcome in certain places. Until we can say that all 850,000 of those people are living well with dementia, we have not done our jobs.
There are 90,000 people living with dementia in Scotland, and more than 3,000 of them are under 65. The impact on those people has been touched on. It is estimated that only two thirds of people with dementia have been diagnosed, and that means that we do not actually have a handle on the scale of the problem.
Alzheimer’s—a term that many people use interchangeably with dementia—is the commonest form of dementia, but there is also vascular dementia; in many patients, it is mixed. A rarer form of dementia, Lewy body dementia, causes a particular type of dementia, with less memory loss but big impacts on movement. In particular, it causes hallucinations, and our police and firefighters should know about that. If they have had 50 calls from the same patient, it may be not because there is a burglar, but because that person is having hallucinations of a burglar. That is why we need to integrate all our public services, so that they learn from each other. Other conditions, such as HIV and Parkinson’s, can also lead to dementia. Many people know about memory loss, but there is not so much awareness of the difficulties that dementia creates with making decisions, concentrating and spatial awareness. People with advanced dementia have real difficulty moving around in our environment, and the situation is even worse if certain parts of the brain are impacted.
Unfortunately, at the moment treatment is very limited; there have been no new drugs for dementia since 2002. The most commonly used drugs are those that stop the breakdown of acetylcholine, a neurotransmitter that sends messages from one brain cell to the next. Those drugs can improve concentration, but they do not work against the underlying causes of dementia, partly because we still do not understand all the underlying causes. We see the breakdown of proteins, we see bits of proteins appearing in the brain and we see brain cells getting tangled up, but what exactly is causing all that? We need to upscale research to a totally game-changing level to understand the cause so that we can try to prevent and treat dementia. In Scotland in 2013, the Scottish Dementia Research Consortium was set up as an umbrella organisation to try to bring all such projects together. As well as laboratory research into the cause and treatment of dementia, research into a human rights approach to those living with dementia is critical in improving support and care.
We are also looking at adapting our health and care systems. As my hon. Friend the Member for North Ayrshire and Arran (Patricia Gibson) mentioned, two years ago Scotland published a national strategy for dementia, which is the country’s third such strategy; the first was in 2010. This one will focus on the whole pathway, from providing post-diagnostic support right through to end of life, and including community co-ordinators.
Dementia is the disease that our generation fears. My grandmother feared tuberculosis—people did not even name it; they called it “consumption”—and the people I looked after as a surgeon feared cancer. What many of us now fear is losing ourself, as we have heard described so graphically this morning, or losing the person we have loved all our adult life.
Providing social care is critical for those living with dementia and for their families. In Scotland, we have spent more on social care, which allows us to provide free personal care. That means that if someone can be supported at home to live with independence and dignity, it will not cost them or their family. Since Frank’s law came into effect in Scotland just two months ago, that has also applied to those under the age of 65. The care they receive is thus related to their illness and particular needs, without a bizarre cut-off at 65 that prevents a 64-year-old from receiving the care that they require.
The problem is that we are struggling to recruit people as carers, whether in care homes or in home care. Most people want to be cared for in their own home, but it is very labour-intensive. Some aspects of the situation are being made worse by Brexit. In parts of Scotland, such as the highlands, 30% of carers are from Europe, so there will be an existential problem for care services. We also need to turn caring into a proper professional career, with training, career development and a decent salary that rewards carers for the very difficult job that they do.
It is critical that we support a person with dementia along their entire journey. All we have to do is to sit in this Chamber and imagine ourselves in that clinic, getting that diagnosis, and then going home and finding that there is nothing—no information, no support and no one to answer questions. The integration agenda, which is further down the line in Scotland, is linking things up. We have linked our NHS back into integration since devolution, but integrating healthcare and social care is a lot harder; social care is much more fragmented, because it is provided by multiple private companies.
We have multiple projects going on in Scotland that are often recognised through Scotland’s dementia awards. My local health board has won one such award for its “Bridging the gap” project, which provides a dementia support adviser to liaise between hospital, community and family along the patient’s journey. In Wishaw, there is a theatre buddy scheme, so that if someone with dementia requires surgery, their buddy—they could be a worker or a relative—is there at the last moment before the operation and when the patient wakes up. One project that I particularly like is the provision of assistance dogs that have been trained by prisoners in Castle Huntly, which involves a double win: the prisoners are proud that they are helping someone in the community, and those living with dementia have assistance dogs.
However, for those who are living with dementia now, the most important thing is to make them feel welcome and included in the communities that we live in. In 2016, I was lucky enough to be invited to speak at the launch of Dementia Friendly Prestwick, which is led by a very impressive team, particularly Julie and Lorna, who are leading lights within it. I had not done any of the work required to set it up; I was just asked to give a speech at the launch. However, I was inspired by that launch to set up Dementia Friendly Troon and Villages, Troon being the community that I live in.
In Prestwick, a relaxed cinema has been running for three years. There are subtitles, the cinema is free, it is not as dark as most cinemas, they serve home-baked food and they have even had a local potter make double-handed cups. The baking is all done by Berelands House, one of our local nursing homes. The cinema was a finalist in the Scottish Dementia Awards, and the sound and screen are of really high quality; I went to watch one of the movies myself. That service is provided by Friends of the Broadway, the Broadway being an old cinema in Prestwick.
In Troon, we have relaxed golf and an allotment, which is supported by other gardeners. We started by asking, “Why do we love living in Ayrshire, and how do we help people to hang on to that for as long as possible?”
First, I apologise for not being here at the start of the debate; I had a meeting with the Turkish ambassador, so I just could not be here earlier. Does the hon. Lady agree that greater support should be provided for those living with dementia to enable family members and other close relatives to take care of their loved ones—that is really important—for as long as possible before putting them into care facilities?
I absolutely agree; care should be provided in the home, if at all possible. That is where we would all want to be. The hon. Member for Ayr, Carrick and Cumnock (Bill Grant) mentioned the hotel room that uses colour as well as technology to make it easier for a person with dementia to stay in it, as well as making it easier for their carer to be there.
Guided walks are provided in Troon. Troon promenade is being redesigned to make it easier to move around on, and Troon is part of Cycling Without Age, which provides cycle rides along the promenade on trishaws every Sunday afternoon. Staff at our local airport, Prestwick, have received the training to make it a dementia-friendly airport. That all depends on Alzheimer Scotland, which provides training to staff at the airport and at other, smaller businesses, such as hairdressers and cafés.
We are the ones who have to make the change. All we are asked to do is be patient, rather than tutting behind someone in a supermarket. In our area, we have managed to get two supermarkets to provide relaxed lanes where people will not be rushed, but will be invited and chatted to as they come through. Let us all be less hectic, and let us make everyone feel welcome in our communities.
It is a pleasure to serve under your chairmanship, Mr Paisley. I thank my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) for securing today’s debate and for her excellent work on the all-party parliamentary group on dementia, championing awareness of dementia and support for those affected. I also thank Members present, particularly the hon. Members for North Ayrshire and Arran (Patricia Gibson) and for Chichester (Gillian Keegan), who have shared very personal stories about how they and their families have been affected. I pay tribute to carers, both paid and unpaid, who do so much to make life bearable for those who are suffering—I apologise for saying “suffering”, but personal experience teaches me that that is the reality.
Dementia is a life-changing disability that affects millions of people in the UK. Some 850,000 people in the UK have been diagnosed with dementia, including more than 1,000 people in my constituency of Burnley. More than 24 million people have a friend or family member who lives with dementia, and that figure is increasing all the time. Alzheimer’s Research UK estimates that one in three people born in the UK this year will develop dementia in later life, and as the hon. Member for Witney (Robert Courts) has reminded us, this is not just a feature of old age; people of all ages can suffer.
Dementia has a huge human cost. My grandmother suffered with dementia—she did suffer—and, regrettably, the support that was needed was not available to my family. Dementia also has a huge impact on resources: each year, the total cost of dementia to the UK is £26 billion, and that cost is expected to more than double in the next 25 years. Given the scale of the issue, it is fitting that Members from all parts of the House have raised their voices today to call for action.
Members have made it abundantly clear that action is needed in three main areas. First, prevention is crucial: The Lancet reports that 30% of cases of dementia could be avoided through an increased understanding of risk factors and the implementation of basic lifestyle changes. It is imperative that the Government lead on enhancing awareness among the general public, and on celebrating dementia-friendly projects and looking at other processes. I am grateful to my hon. Friend the Member for Vale of Clwyd (Chris Ruane) for reminding us of the impact that mindfulness can have on preventing the development of dementia.
In the area of research, it is clear that dementia is the poor relation; as my hon. Friend the Member for Cambridge (Daniel Zeichner) has so expertly reminded us, dementia is decades behind other conditions. Alzheimer’s Research UK has asked, very reasonably, that the Government commit to investing an amount equal to just 1% of the total societal cost of dementia into research. After all, the UK has some of the best scientists in this field, although there are simply not enough of them; they are outnumbered four to one by cancer specialists. The 2015 challenge on dementia, which has been mentioned, was most welcome but does not go far enough, and I look forward to hearing how the Minister might take that forward.
While prevention measures and research to achieve early diagnosis and future treatment are still so inadequate, it is vital that those who are diagnosed with dementia are given access to a comprehensive package of support. That is not just a job for the authorities: we have heard many Members describe pockets of really good practice in their constituencies, and I pay tribute to those who are delivering on the ground. However, there is no doubt that Government cuts to social care funding amounting to £7 billion since 2010 have taken their toll—nowhere more so than in the area of social care for those who suffer with dementia.
We often hear talk of the so-called dementia penalty, which is not surprising, as those affected by dementia regularly pick up two thirds of all care costs. Dementia patients often require more specialised and more expensive care. The associated costs can be as high as £500,000, and they almost always exceed £100,000. It is clear that patients with dementia are treated differently from patients with other conditions and disabilities. The failure to fund care adequately is placing additional pressure on NHS resources: last year, there were 70,000 avoidable hospital admissions for people diagnosed with dementia. That causes unnecessary suffering for patients and their families and is hugely wasteful of NHS resources.
What can be done to right this wrong? The recommendations of the all-party group on dementia could be implemented without delay. Dementia must be fully recognised as a disability, with sufferers afforded the same rights, protections and dignities as any other disabled person. Local authorities and health providers need to collaborate to offer a package of support that is both comprehensive and accessible; as my hon. Friend the Member for Bradford South (Judith Cummins) has stressed, it is no good having help available if that help is difficult to access. The eagerly anticipated social care Green Paper must fully address the needs of those living with dementia. The UK Parliament must lead by example, becoming the first dementia-friendly Parliament and actively promoting and supporting dementia-friendly communities everywhere. All members of health and wellbeing boards should be obliged to become Dementia Friends. Most crucially, the Government’s plans for the NHS and care workforce must properly reflect the needs of people with dementia.
The situation is urgent, and now is the time for the Government to listen. As part of the comprehensive spending review, the Government must introduce a dedicated £2.4 billion dementia fund to cover the additional costs of delivering dementia specialist care, and end the inequity between dementia and other diseases that currently leaves affected families facing astronomical care costs. That fund would enable timely access to an integrated package of support and help to facilitate specialist training for all care workers, equipping them to deliver high-quality dementia care.
Will the Minister commit today to addressing the long-term needs of dementia sufferers in the social care Green Paper and in the NHS and social workforce strategy? Will she commit to increasing research into the development of new treatments? Will she go beyond warm words and ensure that those with dementia are not forgotten in the comprehensive spending review? Will she support the establishment of a dedicated dementia fund to give people the support they are desperately crying out for?
As ever, Mr Paisley, it is a great pleasure to serve under your stewardship. I thank the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for securing this important debate, the hon. Member for Cambridge (Daniel Zeichner) for supporting her in doing so, and the Backbench Business Committee for allowing time for it. I also thank all the other Members who have taken part in the debate, and in some cases shared very personal journeys and stories about their family’s experiences with dementia and, indeed, some interesting and inspiring best practice from their constituencies—things that other areas can learn from.
I also thank the hon. Member for Oldham East and Saddleworth for her personal commitment and dedication to people living with dementia, both through her work on the all-party parliamentary group on dementia and in her constituency. She is so committed to making Oldham East and Saddleworth a really dementia-friendly place to live; she sets an excellent example of what we as Members of Parliament can do in our own communities, and I welcome her vision of making Westminster the first dementia-friendly Parliament. I will do everything I can to support her in that endeavour, because I know that her passion is driven by her experience of having a close family member living with dementia.
Other Members have spoken about their own experiences, and I have also had two very close family members living with dementia: my grandmother and my uncle, who passed away just before Christmas. I have experienced at first hand the impact that dementia has, both on the person who is living with it and those who love and care for them. Hon. Members from across the House have spoken about the importance of carers, and I have seen at first hand the impact that caring for my grandmother had on my mum—on her relationships, her professional life, and her health and wellbeing. Those carers’ commitment should never be taken lightly. A dementia diagnosis is more than a diagnosis for that individual: it is a diagnosis for the whole family, their loved ones, their community and their workplace.
In my constituency, 1,152 people live with dementia. As the Minister rightly said, it affects a lot of families as well as the wider family circle. Has she given any consideration to respite care for those families to give them a break from the physical, emotional and mental pressure that they are under?
Respite care was one of the themes of the carers action plan that we published last year. SCIE is putting together guidance for local authorities on how they can best provide that crucial respite moment for those brilliant carers. [Interruption.]
A diagnosis is very much for an individual, but also for their families and loved ones and for their communities and workplaces. When those come together, it is possible to live well with dementia, as my hon. Friend the Member for Witney (Robert Courts) said. Such personal experiences make me passionate about my responsibilities as a Minister. The hon. Member for Halifax (Holly Lynch) challenged me to continue to push the Government to keep dementia as a priority, and I always will. I am proud of the Government’s commitment to deliver on the dementia challenge 2020 in full to make this the best country in the world to live for anyone with a dementia diagnosis.
The challenge aims to transform the lives of people with dementia, as well as their carers and their families, through better awareness, care and research. We have made significant progress as part of the challenge, but we know, as we have heard today, that there is still much more to do. We have already started our work on our strategy for the period beyond 2020. This is not something that finishes in 2020. It is simply the start of the next phase and we will publish our thoughts on it early next year.
One of the key successes of the challenge has been improved diagnosis. We are meeting our ambition, and today two thirds of people living with dementia receive a diagnosis, but we clearly still have some way to go. Of course, not everybody wants a diagnosis, but we know that a timely diagnosis enables a person with dementia to access the advice, information, care and support that can help them to live well with the condition and remain independent for as long as possible.
We are focusing on reducing the variation in local dementia diagnosis rates. There is a real geographical variation, and targeted support to identify and engage the areas most in need of assistance will really help. Reducing the gap in diagnosis rates will ensure that people with dementia have consistent access to a diagnosis wherever they are in the country. We also know that receiving good quality care improves the lives of people with dementia. Equipping our health and social care workforce with the skills that they need is therefore crucial to the quality of care for those living with dementia.
Since 2012—the hon. Member for Bradford South (Judith Cummins) mentioned this—1 million episodes of the tier 1 dementia awareness training have been completed by NHS staff, and more than 1 million care workers completed the care certificate, or common induction standards. We continue to work to meet our commitment that staff have the training appropriate to their role. We want to see more people doing the tier 2 training, which is much more robust, so we are exploring options to see how we can increase take-up for anyone who needs it.
Is there an audit of hospital environments? Just before I left to come here, my hospital was redesigned using coloured zones and imagery to help people with early dementia move around the hospital independently. Are there similar projects elsewhere?
That is an interesting question. I do not know the answer, but I would be keen to look into it to find out. We are looking to explore ways to encourage the take-up of tier 2 dementia training. I recently co-signed a letter to health and care organisations with the chief executives of Skills for Care and Health Education England to highlight the importance of dementia training and education, which is a really important part of our discussions.
We are also meeting our commitment on Government funding for dementia research of £60 million or more each year, to reach at least £300 million invested over the five years up to 2020. The figure is actually more than £60 million this year—it is £83.5 million. In addition, we have the UK Dementia Research Institute, which is funded to the tune of £290 million: £190 million from Government and £50 million each from the Alzheimer’s Society and Alzheimer’s Research UK.
I thank the Minister for giving way and apologise for the earlier interruption; I am glad it did not put her off her stride.
Much of what we have discussed today—the issues around this illness—are devolved to Scotland, but I want to press her on an issue that is not devolved: legal protection for older people with dementia. What measures can be put in place for financial institutions to have a legal duty of care to look after those people? In the debate we have focused on the practicalities of care, which is important, but we have to think about how we protect people in law in financial terms.
I thank the hon. Lady for that intervention. I am sure the slight disturbance caused by her mobile created a welcome distraction for everybody from my speech. I took note of what she said in her speech and she makes an excellent point about protections.
To go back to research funding, the incredible dementia discovery fund, which other Members have mentioned, was launched by David Cameron in 2015. It is the world’s largest venture fund aimed at a single disease area that looks to develop novel pre-clinical therapies. Our continued commitment to support research has also seen increasing numbers of people involved in the joint dementia research programme, with 20,000 people taking part in dementia research studies. To answer the question asked by the hon. Member for Vale of Clwyd (Chris Ruane), I am happy to meet and discuss any other research that comes forward.
Ahead of developing new treatments, we need to be able to support people to live well with dementia in their communities. The Dementia Friends programme, which a lot of people have mentioned—I am also a Dementia Friends champion—is a great example of increasing public awareness. Through the dementia-friendly communities programme—365 so far this year in England— we are making society more inclusive. We are supporting the National Dementia Action Alliance’s work to promote dementia-friendly hospitals across England through its charter to improve the care that people receive.
My hon. Friend the Member for Witney asked me about writing to the Department for Work and Pensions about improving its guidance to employers, which I will commit to do. We know that careful reforms are required to ensure that the social care system is prepared for the challenges of an ageing society, including for those with dementia. Many Members, including the hon. Member for Cambridge, mentioned adult social care funding. Many Members also talked about cuts to local authorities, but over the past year we have given councils access to an additional £10 billion: an 8% real-terms increase.
However, the fact that we are still talking about the social care system being on the point of crisis, at a tipping point or under huge pressure, shows the scale of the problem. That is why we have committed to publishing the adult social care Green Paper at the earliest opportunity. I share everybody’s frustration about the delays, but it will set out ideas for an element of risk pooling to save individuals from catastrophic costs, which some have spoken about today. We are committed to ensuring that everybody has access to the care and support they need. More short-term social care funding will be agreed alongside the rest of the local government settlement in the forthcoming spending review.
The NHS long-term plan sets outs a 10-year strategy, outlining how the NHS will spend the £33.9 billion cash terms annual increase that will go into the NHS budget. We now know that around a third of dementia cases are preventable. Since 2018, every person attending an NHS health check in England—the hon. Member for Burnley (Julie Cooper) mentioned prevention—receives information about how to reduce the risk of developing dementia. It includes advice on smoking, safe levels of alcohol and being physically active. Between 2013 and 2018, nearly 7 million people attended health checks.
My hon. Friend the Member for Chichester (Gillian Keegan) mentioned Careline in her constituency. There are lots of innovative ways that technology can improve the lives of people with dementia. Jelly Drops are an ingenious way to tackle dehydration using sweet-like capsules. My local county council in Hampshire uses existing technology such as Amazon and wearable technology to help people maintain their independence, stay safe and combat isolation. All those achievements, brought together in the dementia challenge 2020, help to improve the lives of people with dementia, but we know that more needs to be done. We are committed to continuing to improve the lives of people with dementia, and of their families and carers.
I call Debbie Abrahams to wind up.
I thank everybody for their excellent contributions to a really important debate. I particularly thank those who shared their personal stories. Such empathy makes a difference to people who have dementia and to their carers, and I thank Members for that. There were examples of excellent practice. In different parts of the country, excellent work is going on, and we need to make sure that it goes beyond Members’ own constituencies. The key thing is national leadership. I know the Minister is committed. On the areas around housing, transport and social protection, which are not necessarily in her brief, I would be grateful if she made sure her colleagues are aware of the recommendations.
Motion lapsed (Standing Order No. 10(6)).