Before I call the Minister, let me say that this is a heavily subscribed debate, as is the next one. We intend to divide the time equally between the two debates, which means that this debate will need to finish by 3.15 at the latest—perhaps a little before. There is a three-minute time limit on Back-Bench speeches. I know that those on the Front Bench have agreed to be as succinct as they can be. It may not be possible to get everybody in, but we will do our best.
That this House has considered Dementia Action Week.
I congratulate the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) on securing this debate to mark Dementia Action Week. I pay particular tribute to her work as co-chair of the all-party parliamentary group on dementia, and to the charities that she and I both work with, including the Alzheimer’s Society.
I know how hard the last 12 months have been for those living with dementia and their families. Living with dementia is hard in normal times, but harder still during a pandemic. It has been an incredibly difficult year. I know that, and I have seen that. There are more than 850,000 people living with dementia and around 670,000 carers looking after them. I thank everyone who is caring for someone with dementia.
While many thousands of people have dementia, we must not, and I do not, see it as an inevitable part of ageing. Although one in six of those over 80 have dementia, five in six do not. Around a third of dementia cases are estimated to be preventable. I am ambitious—ambitious about preventing dementia, ambitious about developing treatments, and ambitious about one day developing a cure. However, first I will update the House on what we have been doing under the umbrella of the challenge on dementia 2020 and in response to the pandemic.
Last year, we assessed delivery of the 2020 challenge, which showed that we now have more than 3 million dementia friends, thanks to the Alzheimer’s Society. We have 437 areas across England and Wales signed up as dementia-friendly communities. We have 137 trusts signed up to the dementia-friendly hospital charter and, thanks to Skills for Care and Health Education England, more than a million care workers and another million NHS workers have received dementia awareness training. Added to that, our commitment to spend £300 million on dementia research over five years was delivered a year early, with £344 million spent over four years.
The hon. Member makes a really important point: music is one of the things that is known to really help people who are living with dementia. It helps to improve the quality of their lives, and it has been one of things that has been hard to access during the pandemic. I am determined that we see that kind of support restarted, and develop further support along those lines in the months and years ahead.
We have allocated £17 million of funding to NHS England to get the diagnosis rate that I was talking about back up to where it should be, to support the needs of those waiting for a diagnosis and to help those who have been unable to access support due to the pandemic. Everyone with dementia should receive meaningful personalised care, from diagnosis to end of life, to help them to live with the condition and to live the fullest possible life for as long as possible.
It is imperative that we support those—often husbands, wives, partners, sons and daughters—who care for loved ones with dementia. They take on a huge burden of care, both practically and emotionally. Since the Care Act 2014, every carer for someone with dementia should have their needs assessed by their local authority and should then receive the support that they need, whether that is support with caring or respite, time out for themselves or sometimes help with extra costs. That is crucial, not only because carers are so important to the person with dementia they care for, but because they need to have a life alongside caring.
Throughout the past year, we have worked with the Alzheimer’s Society, Age UK, Carers UK, other charities, care providers, local authorities and the NHS to work out how best to support people with dementia and their carers during the pandemic and put that support in place. We have provided more than £500,000 in funding to the Alzheimer’s Society for its Dementia Connect programme, £500,000 to the Carers Trust for its support to unpaid carers, £122,000 to Carers UK to extend its helpline opening hours and £480,000 to the Race Equality Foundation.
Dementia affects the lives of hundreds of thousands of people in this country: not only the 850,000 people who currently have the condition, but thousands more of their family and friends, as I am sure many of us in this House know. It is the leading cause of death in England, and the only condition in the top 10 causes of death for which there is currently no known treatment or cure. Our ageing population means that the number of people with dementia is set to increase to 2 million by 2050, with the cost of caring for dementia more than doubling to almost £60 billion a year.
Over the past 15 months, people with dementia and their families have suffered perhaps more than anyone else because of covid-19. A quarter of all deaths from this awful virus have been among those with dementia, predominantly because of the tragedy in our care homes. Tens of thousands more have seen their condition deteriorate, and families have been pushed to breaking point and banned for more than a year from seeing their loved ones in care homes. Those who look after a relative in their own home have been providing even more care than usual.
Dealing with this pandemic was always going to be extremely difficult, but the truth is that there has been a higher proportion of deaths in care homes in England than in almost any other country in the developed world. Between 17 March and 15 April last year, 25,000 people were discharged from hospital to care homes without a covid-19 test, despite clear evidence of the virus sweeping through care homes in Italy, America and France.
Care providers and trade unions warned the Government about the lack of testing and PPE. The Prime Minister was personally warned about those issues by my hon. Friend the Member for Hove (Peter Kyle) in Prime Minister’s questions on 25 March. I myself wrote to the Health Secretary about these issues on 8 April.
Despite all that, the official guidance on testing before discharge to care homes did not change until 16 April last year, almost a month after we all went into national lockdown. We do not need Mr Cummings to tell us that the rhetoric about putting a protective shield around care homes was complete nonsense; the evidence is there for all to see. The reason this matters—the reason the truth and the facts matter—is that we owe it to people who have lost their loved ones with dementia, to those who are still being prevented from having normal visits to care homes and to all the staff in care homes who have been to hell and back. We have to learn the lessons from what has happened to make sure these terrible mistakes never happen again.
1:46 pm
Holly Mumby-Croft (Scunthorpe) (Con)
It is a real privilege to be able to contribute to this debate on Dementia Action Week. Dementia is an issue that affects many in my constituency.
Like many across this country, my family was affected by dementia: my grandma had vascular dementia. I come from a close family. When I speak to constituents, I recall my family’s experience and what we learned from it. Of course, families’ absolute priority is always to ensure the very best for the person they love. I have spoken to many constituents over the past year, and heard at first hand how much harder that experience has been made by covid. It was right that we prioritised care home residents and the elderly in the vaccination programme, and I sincerely hope that families can continue to be reunited.
My grandma spent the last years of her life in The Valleys care home in Scunthorpe, and we were able to see her almost daily. We could not possibly have appreciated what a privilege that was, compared with the experience that people have had over the past year. We were in the slightly unusual position that grandma came to live in the care home in Scunthorpe from another authority. It is crucial that people with dementia and their families are really listened to. I am pleased to say that when she moved to North Lincolnshire, her needs were listened to, and so were we as a family, but that was in stark contrast with our experience of the previous local authority. Had my family not stood firm and really challenged the behaviour of the previous social services department, things would have been very different for my grandma.
I want to emphasise that this is not a sad story for our family. My grandma ultimately received a good quality of care, but we learned as a family some of the very real challenges that patients and families face. I still speak to constituents who are, quite frankly, overwhelmed with trying to navigate the diagnosis, the paperwork, the admin and the changes to their lives and that of their loved one. That should never be the case, and I urge the Government to do everything they can to ensure consistent standards across the country.
Navigating the admin side of a dementia diagnosis, on top of the care needs, can be immensely challenging. The deprivation of liberty order—or, as families call it, the DoLS order—is a power that needs to be used with great care and consideration. I am very much aware that not everybody has a family advocate and someone who can speak up for them. When we take forward our much needed plans for social care, I urge the Government to look not just at the care but at the whole system that delivers it, at the interaction between patients, families and services, and at how we can ensure that no patient is ever made to feel that their voice is not at the centre of their own lives.
1:49 pm
Dr Lisa Cameron (East Kilbride, Strathaven and Lesmahagow) (SNP)
It is an absolute privilege to speak in this debate today, and to follow the hon. Member for Scunthorpe (Holly Mumby-Croft). She spoke so poignantly about her family’s journey with dementia care, and some of the issues that require to be addressed to improve that journey. Having such expertise in the House is excellent, because this issue will touch so many of our lives and it is important to bring the human aspect to dementia care.
We should remember, as we have all grappled with health issues over the past year, that wellbeing should also be at the forefront of the work we do, and that psychological and mental health are important alongside physical health needs. Certainly, in relation to older adults in care homes who have not been able to see relatives and the relatives who have much missed that contact too, we are going to have to learn lessons from best practice right across the United Kingdom and have a key focus on wellbeing alongside that on physical health.
Dementia is a progressive, long-term health condition that affects about 90,000 people in Scotland currently. The Scottish Government are really committed to delivering a modern social care service for the 21st century, including building a national care service that will benefit people living with dementia, their families and carers. It is also my honour to speak today on behalf of the 5,322 people who live in my local NHS Lanarkshire health board who have been diagnosed with dementia, and on behalf of their relatives and loved ones, and the social and healthcare workers who care for them every single day with such dedication. I would also like to mention the East Kilbride & District Dementia Carers Group, which we hope will be up and running again as soon as possible, in line with the restrictions, because it provides the benefit from social communication, building self-esteem, confidence and social integration that people need, alongside having their physical health needs met.
I want briefly to raise the issue of those who have not yet been diagnosed with dementia. We know there was a drop of about 6% in diagnosis rates between the start of 2020 and February 2021 due to this pandemic. Accurate early diagnosis is absolutely crucial in identifying suitable candidates for clinical trials and available medication, which is most effective at the start of a dementia pathway. So it is very important that we have investment and support to get people diagnosed as early as possible, and that that is doubled up on in coming out of the pandemic. Alzheimer’s Research UK estimates that 1.3 million people in the UK will be living with dementia by 2030, so it is of paramount importance that we do everything we can to ensure they have the best treatment and care possible.
I remind Members that there is a three-minute time limit on speeches, which will be displayed on the clock here and on the screens for those participating virtually.
1:56 pm
Dr James Davies (Vale of Clwyd) (Con)
It is a pleasure to speak in this important debate, which comes at an important time. Last month, dementia overtook covid-19 to reassume its grim title of the leading cause of death in England and Wales. We also know that a quarter of covid deaths have been among those living with dementia. Dementia affects an ever-increasing number of people in the UK, which is presently estimated at 850,000, and it costs our economy £26 billion a year, more than any other disease. Like so many in this Chamber, I have personal family experience of it.
Finding a cure to Alzheimer’s and the other less common types of dementia must be our aim. A cure would be a game-changer for so many. With 88% of people with dementia facing comorbidities, finding a cure would ultimately help to simplify care for hundreds of thousands of older people. To find a cure, clinical trials must be supported. While the 216 dementia trials since 2004 provide valuable information, that number appears insignificant when compared to the 2,900 studies for cancer over the same period. The UK Dementia Research Institute reports that effective treatments and preventions for dementia are within reach. Further progress on existing research provision is therefore essential.
Investment in dementia research comprises just 0.3% of the current costs we face as a result of dementia. In our 2019 manifesto, we pledged to launch a dementia moonshot to find a cure for dementia, doubling research funding and speeding up trials for new treatments. I very much look forward to its implementation as soon as possible. As a former clinical champion for dementia, I recognise that providing a diagnosis to individuals is pivotal to helping to ensure that they receive the necessary support. Early diagnosis is also critical when it comes to ensuring a sufficient cohort for clinical trials.
As part of the ongoing work on social care, will the Minister acknowledge that her Department is considering how to improve diagnosis rates further in all parts of the UK? Will she also comment on the value of technological advances in diagnosis, including the use of apps? Will she confirm that her Department recognises the value of a healthy diet and exercise when it comes to preventing or delaying dementia onset, something very relevant to the debate later today on obesity? As we look beyond the pandemic, which has had such a knock-on effect for those with dementia, I hope Ministers will work to re-energise the fight against dementia in our best efforts to support the estimated 1.6 million people who will live with the disease by 2040.
As co-chair of the all-party parliamentary group on dementia, I welcome this debate on Dementia Action Week. In Oldham, there are approximately 3,000 people living with dementia, more than six out of 10 of whom are living with a severe form of one of the many brain diseases that cause dementia. By 2030, that figure will be nearer 4,000.
Dementia Action Week provides an opportunity to highlight the urgent need for the Government to bring forward social care reform proposals. As such, I support the Alzheimer’s Society’s “Cure The Care System” campaign, which focuses on the need to reform social care funding and on driving up the quality of care for people living with dementia.
People with dementia are by far the largest user group of adult social care, but they face devastating care costs, often paying an additional 15% for their care provision. The average cost for someone with dementia or their family is £30,000 a year. Because of the lack of dementia training for our hard-working care staff and the continued disconnect between health and social care, people with dementia often receive inappropriate care. More and more of us will need dementia care, and more and more of us will become dementia carers for those we love, so it is vital that we get social care reform right.
For carers in the community, the pandemic has presented its own challenges. About half of carers are aged over 65, and they have undertaken an additional 92 million hours of care. This is unsustainable and the Government have to recognise that. It is vital that social care reform supports the needs of our army of family dementia carers by looking at respite provision. In addition, carers’ assessments must be backed by the resources to support the needs identified. The Government cannot continue to just dump additional responsibilities on to local authorities while cutting their resources, particularly in areas such as mine.
It is a pleasure to speak in this incredibly important debate. This year has been a year of great loss. We have witnessed the loss of loved ones, the loss of livelihoods and the loss of our usual freedoms and day-to-day routines. However, we have also seen an immense effort, on the part of our scientists and researchers, to produce a vaccine that is now allowing us to think about returning to life that resembles normality. I think there is a great lesson to be learnt and it is one that, for the most part, we all know to be true: when we focus our attention and come together with a common purpose, we can achieve great things. So as we continue along the road to reopening, we can begin to look at tackling other illnesses, including dementia, which is rapidly becoming one of the most heartrendingly cruel diseases of our times.
Dementia is now not only the leading cause of death in this country, but the only disease in the top 10 leading causes of death for which there is currently no treatment for either prevention or cure. Like many of my colleagues speaking this afternoon, I, too, have experienced this disease at first hand. Both of my grandmothers suffered from dementia and, as time went on, both went from being animated, proud, fun women who were very active in the lives of their families and wider communities to shadows of their former selves; dementia affects not only people’s memory—as people here will know—but their ability to do even the most basic things. Eventually, both were left unable to speak. I vividly remember, as a little boy, lying in my bed praying that God would return my gran to the gran I knew when I was much younger and that she would, once again, be able to recognise me. Of course, it is not like that. Dementia affects not only those who are suffering, but the entire family. For example, for my maternal grandfather, his entire life became about caring for her.
My family’s experience is not unusual. Rather, it is a story replicated hundreds of thousands of times across this country and others. While great progress has been made over the last 10 years in terms of improved diagnosis rates and increased public awareness, it is estimated that over one third of people affected by the condition still do not receive a formal diagnosis. In the case of my health board, NHS Grampian, 4,292 people were diagnosed with dementia in 2019. However, according to Alzheimer’s Research UK, that figure is likely to be only the tip of the iceberg.
2:05 pm
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Timely diagnosis of dementia is really important to help people to understand what is going on, find out what support is available and get advice on what happens next. Since 2016, we have consistently met the challenge on dementia target of two thirds of people living with dementia receiving a formal diagnosis. However, at the start of the pandemic many memory assessment services had to close, and the dementia diagnosis rate has dropped below the national ambition for the first time since 2016.
While we have supported remote or virtual memory assessment services, I recognise that that is not for everyone. I want to see in-person services fully functional as soon as possible, because a diagnosis can make such a difference, allowing people to access the support that they need.
We have provided free personal protective equipment for carers where they live separately from the people they care for, in line with clinical advice. We have given carers priority to vaccines in line with Joint Committee on Vaccination and Immunisation prioritisation, considered them time and again in guidance, worked to better identify them and supported local authorities in the restoration of day and respite services, including with nearly £12 million in funding from the infection control fund.
As we come out of the pandemic, we want not only to ensure that we restore and improve early diagnosis and support for people living with dementia and their carers, but to go further: to prevent people from getting dementia in the first place, support research to develop effective treatments and, ultimately, find a cure. The National Institute for Health Research is right now supporting several studies on dementia.
The 2019 Conservative party manifesto committed to doubling funding for dementia research and delivering a moonshot of ambitious goals. The moonshot will expand the UK’s internationally leading research effort to understand the mechanisms underlying the development and progression of dementia, develop new therapies and help to prevent the condition. We are working right now on developing a new dementia strategy to boost dementia awareness, diagnosis, care, support and research in England. As everyone knows, we are committed to wider reform of social care; we will bring forward proposals for that later this year.
We want a society where the public think and feel differently about dementia—where there is less fear, stigma and discrimination, and more understanding. We want to reduce the number of preventable cases of dementia. We are determined to support those who are living with dementia to live the fullest possible life for as long as possible, and to support those who care for them. We will lead the way in dementia research and innovation to find effective treatments and, ultimately, a cure.
If we want to build a better country as we emerge from covid-19 and meet the challenges of this century of ageing, then the needs of people with dementia must move to the top of the agenda. That starts with dementia research, because ultimately our goal must be to prevent, treat and ultimately cure this often heartbreaking condition. The rapid development of treatments and vaccines for covid-19 has shown us the amazing things our scientists can achieve when they are backed by political will and underpinned with the right resources and partnerships. Ministers now need to apply the same approach to dementia research.
In their 2019 manifesto, the Government promised to double funding for dementia research and speed up progress in clinical trials. When will they deliver on that commitment? Over the past decade, huge progress has been made in imaging, artificial intelligence, genetics and drug development, and that has brought us to a tipping point in dementia research, which the UK is extremely well placed to capitalise on because of our diverse academic research base, funded by the public, private and charitable sectors, and because of the strong foundations in clinical research provided by the NHS. Ministers need to seize this opportunity to give dementia research a greater priority and turn the UK into a world leader in clinical trials, so that patients here can be among the first to benefit from improved treatments.
The second issue Ministers need to grasp is transforming support for families. That should happen across the entire health and care system, but perhaps nowhere more so than in dementia care. Dementia gradually erodes your ability to think, communicate and even move. It destroys your memory, gradually taking away what makes you, you. That is what makes it so very painful for the people who live with dementia and the people who love them.
When someone has dementia or Alzheimer’s, their family is their memory. No matter how amazing NHS or care workers are, they cannot know the foods the person likes, the films they used to watch or the songs they like to sing. That is one of the reasons why so many people in care homes have gone downhill so fast without regular family visits. The bottom line is that we cannot provide good-quality dementia care without putting families centre stage.
Our health and care services need to do far more to identify people who help care for someone with dementia, get them better information and advice and make sure that services are far more joined up, so that people do not have to tell their story to lots of different people in lots of different parts of the system. The Government need to properly fund breaks for family carers, so that they can put their own needs first, at least for a while, and fund other initiatives, such as the amazing support group for carers run by the Alzheimer’s Society in Sefton, who I met recently. They are just absolutely phenomenal and a lovely bunch of people. I believe that Ministers need to change the law to enshrine the rights of care home residents to have family visits, so that the terrible situation facing hundreds of thousands of families over the past 15 months never happens again.
The final point I want to make is on the urgent need for the Government to make good on their promises to reform social care, because while dementia is not yet curable, our broken care system definitely is. For all that the Minister has said, the truth is that when the virus struck, our care system was far weaker than it ever should have been after a decade of cuts, taking £8 billion out of the care system at a time of growing demand. Two years ago, the Prime Minister stood on the steps of Downing Street and promised to fix the crisis in social care
“with a plan we have prepared”,
yet still these reforms are nowhere to be seen. If there is one thing, just one thing, that comes out of this awful pandemic, it must be a long-term plan that gives social care the priority it needs and deserves, and secures a sustainable funding base for the future.
Labour is calling for a 10-year plan of investment and reform to transform support for older and disabled people, including those with dementia, as part of a much wider ambition to make Britain the best country in which to grow old. In the century of ageing, we understand that social care is as much a part of our infrastructure as the roads and railways. If we neglect our country’s physical infrastructure, we get roads full of potholes and buckling bridges, which prevent our economy from functioning properly. The same is true if we fail to invest in our social infrastructure. Without a properly paid and trained care workforce, vacancy and turnover rates soar, fewer people get the support they need and families end up taking the strain.
President Biden gets that, which is why he has made home care a central plank of his post-pandemic infrastructure plan. Britain deserves that level of ambition too. In the century of ageing, everyone should look forward to getting older with confidence, not fear. Labour Members stand ready to play our part in making that happen, but it is time for the Government to act.
I want to take this opportunity to recognise the dedication of our frontline carers. Looking to the future, our local schools and colleges are also working hard to provide the carers of the future. I want to thank Peggy’s World in North Lincolnshire, and Tilly and her very hard- working team.
The Scottish Government published the dementia and covid-19 action plan in December 2020 to build on and continue to expand the national action, since March 2020, on supporting people with dementia and their carers. This plan recognises the significant impact of the pandemic and the necessary response for people with dementia and their carers, and sets out 21 commitments to assess impact and respond to the needs of this group across all care settings at diagnosis and all parts of the dementia care journey.
We are very proud to be the only country in the UK with free personal care, which is extremely important in supporting people under the financial strains that dementia and living with dementia can place on families. The Scottish Government invested £700 million in 2019-20 to support free personal care for older people in Scotland, and extended it in April 2019 to all those under 65 who have a diagnosis of early dementia. There is a plan to increase social care investment by 25% over this Parliament, which is equivalent to over £840 million.
We are also extremely proud to have ensured a living wage of at least £9.30 per hour for social care staff. While we have been rightly clapping everybody in NHS and care settings every week, it is important that they are also financially rewarded for their excellent work. In this toughest of years, the Scottish Government have also included social care workers in the £500 bonus thank you payment, which they launched for NHS and care workers during covid.
I want to finish with another push for psychological therapies, and I refer the House to my entry in the Register of Members’ Financial Interests. My first job was in dementia care, where I led the memory clinic. It is so important that people have access to psychological care, including the musical therapy that the hon. Member for Strangford (Jim Shannon) mentioned earlier and reminiscence therapies, and that we treat people holistically —the whole person—and collaborate to ensure we share best practice on treatment.
I am grateful for the opportunity to speak today. I look forward to listening to others’ contributions.
The Government’s forthcoming social care reforms provide an unmissable opportunity to cure the care system. While dementia as a condition is not yet curable, the care system is, as we have heard. I believe in the principle that healthcare and social care should be provided universally and free at the point of need, and that this is fundamental. In addition, I will be arguing that this should be provided through progressive taxation. The social care reforms also need to support people with dementia to live as they choose, keeping their independence as well as taking part in activities that they enjoy in environments that facilitate their wellbeing. Care needs to be truly person-centred, with control given to people in receipt of it. Lastly, our wonderful care staff must be valued and paid for their work.
Before I close, I want to recognise the impact that the pandemic has had on dementia research. As others have said, we need a commitment from the Government about fulfilling their promise on doubling dementia research, and I would be grateful if the Minister could include that in her closing remarks.
I support the Government’s dementia strategy wholeheartedly and I welcome the steps being taken by the Scottish Government north of border. I want to see the UK as a whole become a world leader in treatment, care and research. But we must keep such intentions in sight and deliver on the commitments we have made. We must take advantage of the improvements in imaging, artificial intelligence and genetics and look to transform early detection so that treatment has at least a chance of being effective.
For all its sadness and turmoil, this year has proved that it is within our power, with the help of research and science, to deliver life-changing results. Let us therefore take heart from the vaccine success and seek to replicate that in meeting the challenge posed by the devastating and ever more prevalent disease that is dementia, so that little boys around the country will not be in the position that I was in, and that so many others are, of praying that their grandmother will be able to return to the person they once were.