PARLIAMENTARY DEBATE
Dementia Action Week - 27 May 2021 (Commons/Commons Chamber)

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.

The charity Music for Dementia says that those who have started to sing or listen to music on a daily basis have

“more than doubled their quality of life…whilst halving their depressive symptoms.”

Could that charity be introduced to the Government’s strategy?

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

It is a privilege to speak in this important debate and to hear the thoughtful and moving contributions from across the Chamber. Dementia is an awful, horrific disease, not only for those who have been diagnosed but for family members who are condemned to witness the slow decline of a loved one. With dementia expected to affect one in three people born in the UK today and numbers set to double within the next decade, few of us will not see or experience the horrors of dementia at first hand.

I am sure we have all heard from constituents struggling to provide care to an elderly partner—sometimes while being ill, frail or elderly themselves, or balancing support for a mother or father alongside their career—and from elderly people who are having to lose their homes to provide for residential care. In Stockton-on-Tees, there are currently an estimated 2,665 people over 65 with dementia, almost 60% of whom live with a severe form of dementia and, as a result, require comprehensive support and social care provision.

Dementia is a condition that many still see as taboo and that carries with it the stereotype of being invisible or frail. It is important that we all remember that people have had a life before dementia and will continue to have a life thereafter. People with dementia must be treated with dignity and afforded the autonomy to continue living good lives after diagnosis, but we must still ensure that we have the right support in place to help sufferers.

We are lucky in my part of the world to have fantastic organisations such as Teesside Dementia Link Services, which provides invaluable support to dementia sufferers, their carers and families through support groups, activities and social events. Its work is second to none, and I know that it has made a huge difference to so many people’s lives. I thank Gail, Mark and all their incredible volunteers for everything they do every day to support people through the toughest of times.

Finding a cure for dementia is a challenge that will define our generation. While we deal with the new pandemic of covid, we cannot forget that the pandemic of dementia has been around for generations. That is why I am delighted that the Government have made finding a cure one of their top priorities, committing to extra funding for research and speeding up trials for new treatments. Both the cure for dementia and reform of our social care system must be national priorities, so that we can provide light at the end of the tunnel for those who are suffering and those who work so hard to support them.

I express my gratitude to my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) for securing this important debate. I pay tribute to the Alzheimer’s Society for the vital work it undertakes in raising awareness of dementia, including organising the annual Dementia Awareness Week. I also thank every professional carer around the country, as well as those informal carers who are all too often not recognised, despite working tirelessly to look after our loved ones, and who are an integral part of our care system.

Closer to home, I would also like to take this opportunity to highlight the inspiring fundraising work that one of my constituents, Councillor Janet Mobbs, has done for dementia sufferers over the years. Her mother, Mrs Edith Mobbs, lived with dementia during the latter part of her life, and each year Janet takes part in the memory walk with her family to raise funds for the Alzheimer’s Society.

Dementia is a debilitating syndrome that affects more than 10 million people a year globally. That is equivalent to one new case being diagnosed every three seconds. Given that one in every six people in the UK aged over 80 lives with dementia, it is highly likely that Members will have a friend or loved one who has been impacted by this condition.

Dementia is not only a terrible syndrome to live with; it also takes a terrible toll on family members, who spend years caring for their loved ones, as my comrade Janet explained to me when she said: “My family found it difficult at first as we had little knowledge or understanding of dementia and how this affected mum. We experienced a bereavement but were unable to grieve as we lost the person mum had been long before she passed away. We struggled to cope with the emotional strain of our changing role in mum’s life as we became carers for the person who had always cared for us.”

Janet is not alone. In my constituency of Stockport, almost 4,500 people aged 65 and over have dementia and that is forecast to rise to almost 6,000 by the end of this decade. With the number of people living with dementia in the UK set to double to 2 million over the next 30 years, dementia is a syndrome that must be urgently addressed.

With the growing threat of dementia in our country, it is time that the Government outlined a proper settlement package for our social care sector, not least given the stark estimates that 70% of care home residents and more than 60% of home care recipients live with dementia. It should also not be overlooked that more than a quarter of the 130,000 UK covid deaths—some 34,000 people—died with dementia. That is truly shocking and shows how vulnerable people with the condition are.

The Government must face the reality that the root cause of rising numbers of dementia cases is years of chronic underfunding of our care system, which has left it struggling to cope and difficult to access. Furthermore, it has led to huge unfairness, with Alzheimer’s Society research revealing that people with dementia will on average pay £100,000 over their lifetime for care. Understandably, this outrages and distresses the people affected and their loved ones. I urge the Government to take action.

Both of my grandads had Alzheimer’s disease, but they experienced widely different pathways with their condition. For my grandad Matty, his Alzheimer’s was diagnosed at age 81 while living with my mam and dad, and he lived until the age of 86, finally saying goodbye to us during lockdown last year. But my grandad Mick had a rare form called posterior cortical atrophy.

In 2006, at the age of 62, Michael Garrity realised something was wrong. He looked for a diagnosis, but his GP told him and my grandma that he did not have dementia. For five years my grandma fought to find out why he was struggling—why they were struggling. In that five years things became even harder. I remember he would sit and watch “The Weakest Link”, “Who Wants to be a Millionaire?” and “University Challenge” and get almost every answer right, but he would struggle to tie his shoes or find a way around the coffee table. He began taking bus journeys and forgetting where he was going and where he had been. It was not until 2011 that James Cook University Hospital noticed his PCA, five years after my grandad first saw his GP.

The problem is that those five years were lost time, when our family could have understood the disease better —how it would affect my grandad, how it would hit my grandma. In 2014, my grandad was finally admitted into care. Over the first six months, he was moved into a care home, then moved into a hospital, then to a new home, then into a psychiatric hospital and then into another new home. He was given the wrong medication, which escalated his condition. He became mute and developed new health problems, too. This was all because he had this unusual type of Alzheimer’s. He had high dependency and the care system could not find the right way to care for him. He died in his sleep in the early hours of 16 April 2018.

I spoke to my grandma this morning, I asked her what message she wanted me to get across today. It was simply that diagnosis is key and then support into the right care. For five years she fought to get the diagnosis my grandad needed, and earlier intervention may have prevented the horrific experience he went through in the early stages of his care.

It is clear from my experience that Alzheimer’s disease can hit people in completely different ways. In the last 12 months, we have invested in science and medicine like never before to deliver a viable covid vaccine at pace. We must have the same drive to attack this disease—to drive earlier diagnosis and new interventions to limit the effects and ultimately to develop a cure. We may never fully eradicate dementia, but learning more about it would mean those facing it are treated with the dignity they deserve. I miss my grandads dearly—we all do.

It is an honour to follow the hon. Member for Redcar (Jacob Young). It is, I suppose, inevitable that with as emotive a subject as dementia, this debate would be emotionally charged. Those of us with familial experience, or who have felt helpless as we watched friends cope with the heartbreak of watching their loved ones decline, know how much a dementia diagnosis demands of not just those affected but those closest to them. In my own family, we saw my father-in-law, Alastair MacDonald—a bright, intelligent, articulate journalist who had covered five world cups and Aberdeen’s victory in the UEFA cup in Gothenburg, written books with various footballers and one legendary Manchester United manager, and was once described as one of the best sportswriters of his generation—gradually struggle with everyday life. Vascular dementia, which he had, is characterised by problems with reasoning, planning, judgment, memory and other processes, caused by impaired blood flow to the brain. Like all forms of dementia, it is cruel, relentless and irreversible.

In my health board area, Lothian, there are currently more than 7,000 people living with a dementia diagnosis. Throughout this current crisis, their plight has been accentuated, often by separation from their loved ones or because, in the case of someone I love dearly, although they are fortunate enough to be with their family, lockdowns and the current restrictions mean that their life lacks the stimulation they need to tackle the onset of the condition. His family have discovered that one of the most frustrating things is the lack of clarity in finding support. My cousin told me that you just kind of get signposted and have to manage and get on with it. Sadly, there are nearly a million people with dementia across the UK whose families are currently experiencing much the same, as they strive to get the vital support that they do not just need but deserve.

Underfunding and neglect over decades have left us with a care system in every part of the UK that is overstretched and inadequate to the challenge that families face daily. I know that all of us in the House recognise that and the need to continue to address it. We must work to change and improve a system that means that, as that wonderful organisation the Alzheimer’s Society has put it, a dementia diagnosis

“claims more than one life”

as families face its destructive effects.

Last week was Dementia Action Week. We know that we will probably not find the cure, but we must use the increased awareness to support organisations that are striving to mitigate the effects, improve care, increase research and find better treatments. We must find a cure for the system across the UK, to enable families to have the support and care and provide the love that their loved ones deserve.

It is a pleasure to follow the hon. Member for Edinburgh West (Christine Jardine) and to have heard the rather moving story from my hon. Friend the Member for Redcar (Jacob Young).

Dementia affects people’s ability to think, learn and make rational judgments. Perhaps most sadly, it can make someone unable to recognise their loved ones. The side effects can be damaging, and include changes in people’s behaviour, emotional issues and lack of motivation. It is a truly awful situation, but it is heartening to see the work being done in Keighley and Ilkley by those who are suffering because of it. Dementia Friendly Keighley is a wonderful organisation that provides help to those with dementia, as well as supporting the family and friends of those who are affected. The group acknowledges the importance of the role the community plays in helping those with dementia by bringing together individuals, families, organisations and businesses to provide support. The group hosts weekly drop-in sessions that provide rest and relief for anyone with dementia and give patients’ carers a well-earned break.

There are so many brilliant volunteer organisations, but I do wish to pay tribute to Dementia Friendly Keighley and, in particular, one of the group’s members, Barbara Wood, whom I was lucky enough to meet in the summer. Throughout the past year, Barbara has continued to work exceptionally hard with Dementia Friendly Keighley, and her work is symbolic of the efforts of the entire group. I am pleased to see that Dementia Friendly Keighley’s impact in the community continues to grow. Recently, the Springbank care home in Silsden joined the growing list of places in my constituency recognised as being dementia friendly.

It is fantastic to see the work being done by local charities, but there is always more we can do at a national level. No treatment is currently able to cure dementia, and although it is encouraging to see numerous clinical trials being undertaken for potential treatments, we must do much more for those with dementia today. That includes increasing early diagnosis, which is crucial for treating the physical illness that can accompany dementia. Accelerating the detection of disease project that the Government are working on, in collaboration with businesses and charities, will go a long way to helping secure that. It is also encouraging that the Government have shown a commitment to finding a treatment for dementia. Like many, I was proud to stand on a manifesto in 2019 that pledged to double research funding going into looking for a cure. There is no denying that there are huge challenges to tackling this terrible disease, but I wholeheartedly hope that we all continue to look at this at pace.

It is a pleasure to speak in this debate, and I want to thank the Alzheimer’s Society for its positive engagement with Members during Dementia Action Week. I also wish to note that 6 to 12 June is Lewy Body Dementia Awareness Week, which seeks to raise awareness about a common but seldom talked about form of dementia.

In Liverpool, just over 5,500 people are living with dementia, with that number set to increase by more than a quarter in less than a decade. Our ageing population means that the demand for social care services is set to increase dramatically. I refer to social care as the Cinderella service, one forgotten and avoided by successive Governments for too long. There has never been a more urgent time for reform of the sector. Its widely reported absence in the Queen’s Speech was much cause for concern. The pandemic threatens real financial instability across the sector, exacerbating the long-established crisis in social care. Under-occupancy rates in care homes are up and care home providers are failing to keep pace with demand.

There must now be a real acceptance by Conservative Members of some unavoidable truths. The first is that the market is not capable of providing the answers on putting social care on a sustainable footing. No longer can we continue to rely on regressive forms of taxation such as council tax to properly fund care. Local government should lead the reforms, but it must have the resources to do so and be able to provide a modern service, in house, where diversity of choice is respected alongside the care workforce who provide the care. That means decent terms and conditions, including good wages, as well the professionalisation of the sector, so that the workforce can grow and develop. A failure to do this will mean that the vacancy problem that exists across the sector will only worsen. If the levelling-up agenda is to be credible, social care reform should be front and centre of a strategy to reduce health inequalities in later life across all our regions.

My office and I are due to become dementia friends in the coming weeks. The information that Dementia Friends emphasises is that there is more to a person than their dementia. That sentiment should be at the heart of tailored dementia care that respects the needs and wishes of individuals and, again, of the workers looking after our most vulnerable. In bringing forward their social care reform proposals, the Government have an opportunity to bring about real change. Based on their record to date, I will not be holding my breath.

Today, we have heard some moving examples from colleagues, particularly my hon. Friends the Members for Scunthorpe (Holly Mumby-Croft) and for Stockton South (Matt Vickers), of their own family situations, to which many of us can relate. It is fair to say that every family has stories such as those to share. It is a sign of how far we have moved on from old stigmas that all of us can talk about this openly. My family is no exception, as my father looked after my mother for almost a decade. After she died, I said to him once, “I honestly do not think I could have done what you did.” The answer came back, “You never know what you can do until you have to do it.” Today, around the country, there are probably hundreds of thousands of people in different families who have been finding out how much they can do. Many of them would love to have done much more during this last year of the pandemic but were unable to do so for the reasons given by Members across the House, including social care difficulties and homes not being accessible.

We will never know the exact emotional, mental and physical cost to those who have suffered and are still suffering from dementia in care homes, unable to see those closest to them for so long, but we do know, as I know from my mother-in-law, that the more human contact they have with the people they love most, and the longer they have with those closest to them, the faster their own mental abilities will spark. That access to people with dementia in every family is incredibly precious, and I am sure the Minister is conscious of that.

Today, in this short time, I want to highlight the good work done by the NHS trusts in Gloucestershire and by charities to help people with dementia in my constituency of Gloucester and elsewhere. The introduction of the purple butterfly scheme in Gloucestershire Royal Hospital some years ago has proved very successful as a way of identifying patients who have dementia, making it easier for the nurses to understand the difficulties that patients may have in communicating. The introduction of so-called Admiral nurses who are trained in handling patients with dementia is also making a difference.

There are three questions I want to end with today. First, can the Minister comment on the research work on dementia of all kinds across the world that the former Prime Minister introduced at the G7? Secondly, what progress is being made on Alzheimer’s research? Thirdly, the Minister herself said how important it was to have faster diagnosis of Alzheimer’s and dementia, not because—unlike cancer—it will necessarily lead to saving lives, but because it can lead to a much better quality of life if it can be identified earlier. That is all I can say today, but I encourage everybody in this House to talk about what is such a difficult disease for so many people.

I am very pleased to be participating in this debate and, like others in this Chamber, I too have a relative living with dementia. I have spoken about her before in this place: it is my mother-in-law, Iris, who is now completely debilitated by dementia. Only a few short years ago, she was an active and long-serving councillor on Glasgow City Council. She ran marathons and participated in them across the world from New York to Tokyo. She was always on the go and would think nothing of jumping on a plane just for the sheer joy of going sight- seeing, all by herself.

Iris was respected and held in deep affection by all who knew her, but in a sudden and dramatic decline, she became unable to look after herself and moved into a care home, something she found difficult to adjust to. Her essential spark was still there, and flashes of the old Iris were still discernible. However, her condition gradually progressed, as we know it does, and that accelerated during the pandemic. She is now completely beyond reach. She is locked in a world that must be bewildering for her. Her ability to communicate on almost any level is completely gone, and Iris is no longer recognisable as the spirited woman that she once was. That, as we have heard today, is a familiar story. Dementia is a cruel illness, where loved ones are both present and absent at the same time. It is bewildering for those living with the condition and heartbreaking for the family members affected.

The Scottish Government commissioned the independent Feeley review into adult social care and are seeking to build a national care service to support those in Scotland living with dementia—thought to be 90,000 people and their families and carers—as well as investing £9.2 million, benefiting around 83,000 unpaid carers through the pandemic. But what we really need, and what we must have, is more research into this dreadful and terrifying disease. We cannot risk the progress on research and treating dementia stalling or even slipping back. Early diagnosis is considered hugely important to dementia sufferers, as there is evidence that, caught at an early stage, it is more treatable and progression can be slowed, so I urge the Minister today to press on with the movement and encourage momentum behind the research on this awful condition, which we know will affect 1.3 million people in the UK by 2030. We cannot allow any more time or opportunities to pass us by as we seek to support those living with, or at risk of, dementia.

Like many other hon. Friends, my family has also been touched by dementia. My grandmother spent her final days in a care home and suffered from Alzheimer’s disease. The woman who looked after me when I was a small child was taken from us, but her story was not a sad one: she lived a long life, had regular visits from her family, and, crucially, was loved. My mother was also a nurse and a deputy sister caring for those with Alzheimer’s disease, and my father was a care home manager in Peterborough, providing love, care, and a home to those with dementia. The condition is a progressive one and brutally attacks people’s ability to think and communicate. It takes away who you are. It is an evil condition, but I am thrilled that the Minister has such a strong commitment to finding a cure.

As many other hon. Members have remarked, the Government’s promise to double funding for dementia research and speed up progress in clinical trials is incredibly welcome. The dementia moonshot could be a game-changer and now is the time to deliver on that pledge. As Alzheimer’s Research says, the UK is well placed to capitalise on research. We have a vibrant, diverse research ecosystem thanks to a variety of research and funding sources. This, together with the reform of the social care system, has to be a national priority.

As a member of the Health and Social Care Committee, I have heard some very uncomfortable stories about how those with dementia have had delays in diagnosis, difficulty in accessing care packages, and, ultimately, unhappy experiences at the end of their life. I agree with my hon. Friend the Member for Redcar (Jacob Young) that we need to adopt the same attitude to finding a cure for dementia as we have done to the wonderful combined effort that has gone into searching for a covid vaccine.

I wish to pay tribute to everyone at the Alzheimer’s Society in Peterborough and the Dementia Resource Centre in my constituency who do such wonderful and marvellous work.

Finally, I want to mention a meeting that I have had with the Alzheimer’s Society and the worrying rise in the prescribing of anti-psychotic medication to people with dementia during the covid-19 pandemic. A total of 6,195 over-65s in Peterborough and Cambridgeshire have a formal diagnosis of dementia. Figures from Cambridgeshire and Peterborough show that 656 dementia patients aged 65 and over were prescribed these anti-psychotic drugs, which is up from 619. I understand that the Department of Health and Social Care is monitoring the monthly data, but I hope that there will soon be some action to address this issue.

Members from across the House are making some excellent and emotive points, particularly on the impact that dementia can have on our elderly population and their loved ones across the UK.

As ever, our incredible social care workers across the country have played a vital role throughout the coronavirus pandemic. I am particularly proud that it is the Labour Government in Wales who have not just clapped for our carers, but paid them, too, with a special thank you payment for NHS and social care staff, which has benefited more than 220,000 people.

Today, I will, if I may, draw attention to another worrying trend, which is the rise in dementia diagnoses for athletes who have dedicated their lives to their sport. I am extremely proud to sit on the Digital, Culture, Media and Sport Committee. Our inquiry into concussion in sport has heard some extremely shocking evidence. In March, we were told by Dr Willie Steward, a consultant neuropathologist at the University of Glasgow, that women and girls face double the risk of concussion and developing brain injuries from playing sport. The links between dementia and sports such as football and rugby have certainly been receiving more attention over the past few years. Indeed, back in 2017, colleagues may be aware that the BBC documentary fronted by former footballer Alan Shearer explored these links. At the time, Shearer said that his motivation to participate was fuelled by his personal concerns that the rates of dementia might be higher in retired footballers than in the general population.

This issue is not just connected to football. A group of 40 rugby league stars, all under the age of 55, are currently in the process of launching sport’s first dementia-related court case. All 40 of those former players are showing symptoms of dementia and blame concussions and head injuries suffered during their careers for their current prognosis. Many of those athletes played at the elite super league level and now have plans to take action by suing the governing body, the Rugby Football League, for negligence. It simply is not good enough.

It is clear that we have long way to go until the issue of concussion in sport and the subsequent links to dementia are properly investigated and addressed by those at the very top, but in February the Premier League announced that it will add additional permanent concussion substitutions to improve the management of possible neurological head injuries in football. That is of course a welcome step, and I hope that other governing bodies and boards will follow suit across all sports.

However, for industries such as professional wrestling that remain unregulated the links between concussion and dementia are likely to persist. I have spoken passionately about my role as the co-chair of the all-party parliamentary group on wrestling a number of times in this House, and I draw attention to our recent inquiry, which highlighted the importance of concussion protocols across the industry.

There are some excellent charities out there, including the fantastic Head for Change in south Wales and the Alzheimer’s Society campaign “Sport united against dementia” that are working hard to change things for the better, but they urgently need more support. I sincerely hope that the Minister is listening and taking my concerns, and those of so many others, on board and seriously, and will work with colleagues in DCMS towards meaningful change to protect lives.

The House is at its best on occasions such as this when we can demonstrate that we are members of the human race. We have heard some very heartfelt stories. Dementia is a heartbreaking illness for those who suffer from it and for the family and friends of the person so afflicted. It is very stressful when someone is admitted to hospital and those they know are told that they have dementia, and it turns out to be a urine infection.

With the coronavirus pandemic dominating the headlines for over a year, many other health conditions that existed before and continue to do harm have been somewhat put aside. The issues surrounding dementia can be loosely broken up into two concerns: the health complications and the financial structures. We should not accept dementia as simply a part of growing old. It is a real issue, and is the leading cause of death in England. Currently 850,000 people are living with the condition in the UK.

Our wonderful national health service staff and health professionals have done a brilliant job of delivering the successful vaccination programme, but people with dementia have been worst hit by the pandemic, accounting for over a quarter of all covid-19 deaths. The percentage of those in Southend West—we have the highest number of centenarians in the country—with the condition is higher than the average for England, and the east of England and Essex. This is not a health problem that we can ignore; it is a serious local and national issue, although we have some wonderful care homes in Southend that are doing magnificent work on dementia.

Dementia is so different from many other health problems because the NHS does not always cover it free of charge. Our party’s manifesto committed to seeking cross-party consensus to bring forward reform proposals, and stated that

“no one needing care has to sell their home to pay for it.”

I have received emails from worried constituents with financial concerns about paying for their own healthcare or for that of elderly family members. I am pleased that reform of the social care system was mentioned in the Gracious Speech, and I hope that the Government ensure that no one has to lose their principal private family residence and their savings to pay for healthcare.

For individuals, relying on the carer’s allowance to support their family members struggling with dementia is proving extremely difficult during the coronavirus pandemic and an adjustment is needed. A financial barrier is stopping people receiving life-saving care and attention, and that needs changing. I urge the Government to implement cross-party talks and explain what steps will be taken to ensure that dementia healthcare is affordable for all. I have previously raised that issue in the Chamber and in questions.

Dementia is the only condition of the top 10 leading causes of death in the UK for which there is no treatment to prevent, cure or slow its progression. The rapid development of treatments and vaccines for covid-19 showed us what science can achieve with political will and the right resources and collaborations.

It is a pleasure to speak on this issue, which is incredibly important to many of us in the United Kingdom. Last week was Dementia Action Week, which reminded us all of how important it is. Dementia has touched many lives all too often. I am sure that all of us present know of someone who has been diagnosed with dementia. Some people have spoken of personal relationships. I have had a number of friends who have also, unfortunately, had dementia. It is one of the leading causes of death in the United Kingdom.

Statistics from Alzheimer’s UK indicate that some 850,000 people in the United Kingdom are living with dementia. Some 20,000 of those people live in Northern Ireland, and unfortunately there are 1,152 in my constituency. For those with dementia who reside in care homes the generalisation of memory loss is simply not enough. I believe that we need to consider the long-term effects that patients have suffered from not being able to seek comfort through seeing loved ones as often as needed. A constant feeling of fright, anxiety and loneliness has consumed the minds of dementia patients.

I mentioned the Music for Dementia charity in an earlier intervention on the Minister, and she was kind in her response. It is important that music is introduced to people with dementia because it can help them. The Department must consider research into the benefits of music, and a UK-wide strategy to implement such support would be welcome.

There are things that we can do ourselves to reduce the risk of developing dementia, such as taking care of our diet, getting plenty of regular exercise and stimulating our mental health. But people are not always to blame for what happens.

The Alzheimer’s Society’s recent “Cure the Care System” campaign highlights the struggles of looking after those with dementia, and I want to speak up for the carers. Some 700,000 unpaid carers are looking after people living with dementia across the United Kingdom of Great Britain and Northern Ireland. I find that astonishing, and more work must be done to offer them sufficient respite. The responsibilities, as I know from friends and their families, can become overwhelming, and it is crucial that carers know that help and support are available. The people supporting those who live with dementia have proved their dedication to this country, and it is our duty in this House and across the whole of the United Kingdom of Great Britain and Northern Ireland to ensure that they are protected in society today.

I conclude by thanking the Alzheimer’s Society, Music for Dementia and all the other charities. They should know—I put it on the record today—that their work is appreciated by so many, including me and every other elected representative and every carer who depends on then.

It has been an honour to take part in this debate. It is all too rare for Members to talk so much about what has happened to them personally and to the people they love. We are here to help and support people when they are going through difficult times, so the House can be at its best when we show that we are human.

I will not forget these stories of the people we have loved and the people we have lost. The hon. Member for West Aberdeenshire and Kincardine (Andrew Bowie) talked about being a little boy and lying on his bed praying that his grandmother would go back to being the person he once knew. When the hon. Member for Gloucester (Richard Graham) spoke about his parents, I was thinking—I know this from my own family and friends—“How on earth could you have gone through and done all that?” and he said, “You never know what you can do until you have to do it.”

I really feel a sense among people here that we want to help families more, and help them deal with not only the emotional strain, as my hon. Friend the Member for Stockport (Navendu Mishra) mentioned, but the financial strain. I firmly believe that we should help people to help both themselves and one another. I spoke quite a lot about the absolute need not just to involve families, but to see them as genuine partners in the care process because, with dementia, we cannot give good quality care unless we support families.

Staff also play an absolutely vital role, as mentioned by my hon. Friend the Member for Liverpool, Wavertree (Paula Barker). They have gone above and beyond the call of duty, especially during this pandemic. As part of the social care reforms, we urgently need a national strategy to transform the pay, training, and terms and conditions of the care workforce. We saw high vacancy and turnover rates before the pandemic, and half of all domiciliary care workers are on zero-hours contracts.

We need to value staff and treat them like the professionals they are, because they are so important to the quality of care. I hope that the Minister will say something about that when she closes this debate. I am proud that the Labour Government in Wales did not just take part in claps for carers, but gave them a special payment. We need a much more long-term, sustainable solution there.

My hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) secured the debate, and, as she said, the bottom line is that we need social care reform. The truth is that our politics has been far too slow in devising a solution to this long-standing issue. As my mother would say to me, “It can’t be a surprise that we’re all living longer, Liz. You knew when we were born.” Her words will always echo in my ears.

As the brilliant group Social Care Future has argued,

“we all want to live in the place we call home with the people… we love, in communities where we look out for one another, doing the things that matter to us”.

The basic aspiration that older and disabled people should have the freedom and support to live a life like everyone else should not be regarded as extraordinary, yet in the 21st century, in one of the richest countries in the world, this is where we have ended up after years of political failure.

A long-term solution to the challenges facing social care, including for those with dementia, is not just desirable; it is essential. We cannot level up our country or build a better future or ensure we all look forward to living longer—not fear it—unless we invest in and reform social care. We heard lots of examples of what people are trying to do within the existing system, often against all the odds. We need a reformed system. We need to understand that social care is as important as the NHS. We have to understand that the two are inextricably linked.

We all—not just today in the debate and not just in relation to health and social care, but across society—need to understand that getting older and all these issues are not going to happen to someone else; they are going to happen to us all. Very few people want to think about what it really means to be very, very old, but one baby in four born today is set to live to 100. We need the House and the country to take long-term decisions, which our constituents and future constituents need. It really is time to act.

I will suspend the House for a brief moment for the sanitisation of both Dispatch Box covers and the safe exit and arrival of the main players.