Dementia Research in the UK

Debbie Abrahams Excerpts

Thursday 10th February 2022 Commons Chamber

[Debbie Abrahams (Oldham East and Saddleworth) (Lab)]

I beg to move,

That this House has considered dementia research in the UK.

I thank the Backbench Business Committee for granting this important debate, the all-party parliamentary group on dementia, of which I am the co-chair with the wonderful Baroness Sally Greengross, and the Alzheimer’s Society for all its work to support the APPG. I also thank the many Members who agreed to sponsor the debate, although being just before recess it is obviously a difficult slot to fill.

Dementia is one of the biggest health challenges that we face today. It is the UK’s biggest killer and, with an ever-aging population, the number of people living with dementia in the UK and around the world is set to grow. Indeed, figures from the Alzheimer’s Society show that around 900,000 people are currently living with the condition in the UK, and that number is set to grow to 1.3 million by 2030. There will be few of us who do not know somebody who is either living with dementia or affected by it.

That includes me. My mum was 64 when she was diagnosed with Alzheimer’s disease and unfortunately she died 10 years later. The work I do on the APPG is in her memory, and in recognition that there are millions of families affected by dementia and who are currently caring for people they love who have one of the many degenerative brain diseases that cause dementia. We frequently talk about dementia as though it was just one disease, but it is not. Dementia is a set of symptoms, but there is an array of degenerative brain diseases that make up dementia, of which Alzheimer’s disease is probably the best known.

[Dr Rupa Huq (Ealing Central and Acton) (Lab)]

My hon. Friend talks movingly about her mum. My mum also had frontotemporal dementia as the cause on her death certificate in 2017, 10 days before polling day—thanks, mum! Towards the end they have a mixture of intransigence, stubbornness, regression and paranoia. A minibus from Ealing Council used to come and take her to a memory clinic in Acton, but it was largely old chaps playing dominoes, and that was not really her scene. She loved entertaining, and it was so sad that someone who used to cook for so many forgot how to swallow by the end. Does my hon. Friend agree that, as well as the shocking “moonshot” that we were promised in the 2019 Conservative manifesto, which has never happened, research should look at culturally and gender-appropriate solutions to this awful disease? As she says, so many of us know people who are afflicted by it.

[Debbie Abrahams]

I thank my hon. Friend, who makes a powerful point about her own experience with her mum’s frontotemporal dementia and the importance of ensuring that we understand, from different cultural perspectives and different ethnicities, the impact of dementia and how we care for our loved ones who have it.

I want this debate to be about hope. That is so important. My hon. Friend has just spoken about her mum, and it was very hard for my mum. She could not speak and could barely move. She could not feed herself. It was a very sad state. However, there is huge optimism and reasons for hope, and that is what I want this debate to be about. I firmly believe that, as with many other conditions, research will find a cure for dementia.

We have one of the best life sciences sectors in the world, as we have seen over the past few years with the work that the University of Oxford and others have undertaken with the covid vaccination programme. Our researchers are rarely talked about, but they are our unsung heroes and we should be immensely proud of the work they do and the significant contribution they make to the economy. I believe it is a matter of when, not if, we will see the breakthroughs that are desperately needed for therapies in dementia research.

However, that is fundamentally dependent on adequate investment. Despite the ever-increasing prevalence of dementia, research into it is consistently and disproportionately underfunded. There is news from the United States of treatments such as aducanumab, which has just been approved by the Food and Drug Administration and is expected to help people when they are diagnosed with dementia. This is a great and exciting opportunity for the Government to support the field and cement the UK’s place as a world leader in dementia research.

As my hon. Friend has just mentioned, we know that during the 2019 general election the Conservative party promised to double dementia research funding from £83 million to £166 million a year over a 10-year period—the “dementia moonshot”. Similarly, the Labour party has committed to that. We have cross-party consensus, but we are still waiting for the Government to bring forward any of that additional funding. Last year, in fact, there was a 10% fall in the amount of funding provided to dementia research, so it received only £75 million instead of £83 million. That is a huge missed opportunity to expand our research capabilities in that area, to support the inspiring academics working in the field and to provide hope to the millions of people affected by dementia across the UK. It also does not make economic sense, as I will move on to later.

[John Nicolson (Ochil and South Perthshire) (SNP)]

My mum died of dementia at the start of the covid outbreak. She formed a great attachment to Madam Deputy Speaker, of whom she was very fond, and Madam Deputy Speaker was very fond of her. Her name was Marion. She went from being a sparkling presence to somebody who, at the start of the pandemic, was locked in for her own protection and I was not able to go and see her. I had never before understood the whole idea of somebody turning their face to the wall, but she just stopped eating and drinking, and within a week, she was dead. I hope that when the story of the pandemic is written, we will remember all those people who died because of it and who will never be recorded as having died of covid. They died through loneliness, which is so important for us all to remember.

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[Debbie Abrahams]

I similarly add my sincere condolences to the hon. Member. I could not agree more with his sentiments. It does affect everybody and it is moving to hear how different hon. Members have been affected by their loved ones. I want to provide hope as well, and I hope that what I go on to say will provide a bit of comfort to him. We must do more on it, though, must we not?

The Government have said that we can expect to see their plans on dementia research in the national dementia strategy. I am grateful to see the Minister in his place, because we have worked together on dementia in the past and I know that he feels as passionately about it as I do. Given that there has been a real hiatus from the manifesto in 2019 to where we are now, and that we have actually slipped backwards, I would be grateful if he could commit to discussions with the Treasury about an announcement in the spring statement next month. That is way overdue and we must provide hope to hon. Members on both sides of the Chamber.

It would be remiss of me not to mention the success of previous Governments in the last 15 years. We had our first dementia strategy in 2009. My right hon. Friend, now the Mayor of Greater Manchester, was the author of that fine strategy. We must also pay tribute to the former Prime Minister David Cameron for his work on it. He managed to increase dementia research from just over £28 million to £82 million during his incumbency. Government-led initiatives, such as his challenge on dementia, establishing the UK Dementia Research Institute, and leading the world during our 2014 G8 presidency by hosting the world’s first dementia summit, put us on a good footing to lead the world in this field. We need to build on that, but as I say I fear we are slipping backwards.

I mentioned the importance and urgency of fulfilling that commitment, but I also want to stress the economic argument. We heard last week, in the Government’s levelling-up White Paper, about the huge potential economic benefits of investing in research and development, particularly in the life sciences. Our life sciences sector in the north-west, spanning from Liverpool all the way to Hull, has magnificent research institutes and organisations. We know that extra Government investment acts as a catalyst to unlock private funding. A study conducted by Oxford Economics in 2020 found that each £1 of public money—Government money—is at least doubled. If we look at what that would mean for dementia research, a moonshot investment of £800 million over the next decade could unlock £1.6 billion to £1.8 billion of additional private investment. This is an answer to the levelling-up issue to which the Government have said they are committed. I urge them. This is a source of addressing some of the issues they are facing on that particular policy promise.

It was because of the lack of Government movement on the issue that last year the all-party parliamentary group decided to undertake a dementia research inquiry. As well as making the case for the moonshot, the resulting report, “Fuelling the Moonshot”—do look at it on the Alzheimer’s Society website—set out how the money could be best used to support the sector. Throughout the inquiry, we sought to look at the entire dementia research system. It is important to recognise that, when we talk about dementia research, we do not just mean exploring for cures and treatments, although that is obviously vital; it is also about researching diagnostic methods, how dementia can be prevented and exploring how people with dementia can best be cared for.

Over the course of the inquiry, we took written and oral evidence from hundreds of people living with and affected by dementia, academics, charities, research institutes and research participants. I thank everybody who took part. We could not have produced the quality report we did without their input. They ranged from Exeter, where researchers are investigating how we can improve the quality of life for people with dementia, to Edinburgh, where leading academics are researching the links between dementia and head traumas in sport. What we found was a rich, diverse and passionate set of people working tirelessly to improve the lives of people with dementia and their families, but they need our support and they need Government support.

[James Sunderland (Bracknell) (Con)]

I was not going to speak today because of a clash with a Bill Committee, but I have been asked by several constituents to come in to listen to the debate. The hon. Lady is putting forward a persuasive case. I want briefly to pay tribute to the hidden army of carers across the UK: the current estimate is that there are about 6.5 million of them. They are perhaps saving the Treasury over £100 billion in lost wages. Does she agree that we should do more to increase carer’s allowance and to formally recognise those very selfless and diligent people?

[Debbie Abrahams]

I thank the hon. Member for his intervention. I am very grateful to him for coming here. I agree totally with the points he has made to acknowledge the army of family carers who support people living with dementia and the fact that they are supported by a pittance. We need to do much, much more in that regard.

I was coming on to talk about the importance of the work of charities such as Alzheimer’s Research UK and the Alzheimer’s Society. About half of all the research undertaken is as a result of the funding raised by the Alzheimer’s Society. As many would expect, like other charitable sectors, medical research charities were hit particularly hard as a result of the pandemic. The Association of Medical Research Charities estimated that the pandemic has caused a shortfall of UK medical research investment of at least £310 million. That huge loss of income has of course impacted on funding decisions for these charities. The Alzheimer’s Society had planned to fund two research calls last year, but it was unable to do so because of its financial situation. The same thing was felt across the entire research community. An Alzheimer’s Society survey found that 85% of researchers reported that the pandemic had led to fewer funding opportunities being available for them.

Similarly, like those in nearly every UK sector, dementia researchers have been hard hit by the effects of the pandemic. For many, lockdowns meant that their labs had to close and participants could no longer take in part in trials. I spoke to a researcher in Manchester who had spent months growing brain cells for her research, only for them to have to be thrown away—months of work wasted. The pandemic also had an impact on the work of researchers who worked outside labs. For example, it affected those working in areas that require face-to-face contact with participants—including people with dementia—such as drug, clinical and care intervention trials.

Understandably, many clinical staff were redeployed to work in the frontline NHS throughout the pandemic, and that heavily impacted on the progress of dementia research. An Alzheimer’s Society survey from April 2021 found that almost a quarter of its funded researchers said that they or another team member had been redeployed in the NHS or in frontline services during the pandemic. We know that much of the clinical research that is undertaken depends on the effective clinical running of routine NHS dementia services, and many of those were seriously affected during covid.

One area I was particularly concerned to hear about during the inquiry was the impact of the pandemic on early career researchers. These are researchers who are at the PhD or post-doctoral stage of their careers. For many of them, much of their time and focus is taken up with concerns about where their funding will come from, or whether they will be able to progress any further. One researcher told the all-party group that

“typical…contracts go on for 3 years, and you have to spend a lot of your time in year 3 applying for your next tranche of funding—affecting your productivity.”

She went on to say that

“instead of concentrating on research, academics are having to worry about their mortgage.”

Of course, that has only been exacerbated by the pandemic.

There was a concern that having to suffer a break in their research left today’s early career researchers uncompetitive in the job market. There is a fear among those researchers that, when they apply for funding for the next stage of their career, they will not be looked on as favourably as others. In May 2021, the Government announced a fund of £20 million to support those charity-funded ECRs. I would be grateful if the Minister, in his closing remarks, responded to the recommendation that we made in our inquiry report on how we can further support these important researchers, without whom we will not see the next breakthroughs. They are absolutely vital and should not be overlooked.

Throughout my time as co-chair of the all-party group, and particularly during the inquiry, I have been lucky enough to hear at first hand from people living with dementia, and from their families. During the inquiry, I spoke to inspiring people who live with dementia or who have cared for people with dementia, and who gave up their time to participate in dementia research. I was struck by the sense of empowerment that this gave them. They know that the activities that they are undertaking may not help them directly, but they recognise that the research may support better care, treatments and even a cure for someone in the future.

To ensure that the UK is a world leader in dementia research, we must be able to attract participants to take part in trials. As one research participant put it:

“Too often research feels something that is just done to someone, rather than something that people can be a part of.”

People often do not know how they can be involved in dementia research. I want to draw everyone’s attention to Join Dementia Research UK. I encourage everyone, including hon. and right hon. Members, to sign up to it. It can link them up to research projects happening across the UK, and that is how we will help to make progress. The service is currently trialling writing to people with dementia after their diagnosis to invite them to participate in research. I would be grateful if the Minister said a little bit about how his Department could support Join Dementia Research UK with its pilot and help to roll it out.

Former England rugby union player Ben Kay is one such research participant who has also taken part in our inquiry. He has spoken quite openly about how important it is for him to be involved in the Alzheimer’s Society’s funded research programme that investigates the links between rugby and dementia. I am sure many Members here will be familiar with this not just in rugby, but in football. Nobby Stiles springs to mind, but we also know that Bobby Charlton, a particular hero of mine, has been affected. We need to understand head trauma in all forms of sport: not just those that use the different shaped balls that boys in particular play on football and rugby fields, but other sports as well. That issue, the Minister will know, has been of growing interest, particularly in the media. Again I would be grateful if he said how, with his cross-departmental work, he has been able to support this. Extra funding through the moonshot could really expand our knowledge of that area, so we can ensure that everybody can participate in sport safely. It is also important to ensure that people understand the risks and what steps they can take to minimise them, which is another area of research being undertaken.

One of the most exciting areas in dementia research at the moment is diagnosis. There is a real prospect that very soon we could see blood biomarker tests readily available to help to ensure people receive not just an accurate, but an early diagnosis, and I am talking many decades before we actually see the physical, behavioural and cognitive symptoms that we are familiar with in dementia. These can be cheap and easy to administer, much like the countless other blood tests that happen day in, day out. Again, I would be very grateful if the Minister responded on how we can make sure that, as those come on line, we can make them readily available.

Before I close my remarks, I would like to highlight some of the excellent research already taking place in the UK, particularly through the UK Dementia Research Institute. Set up 2017, this is the biggest investment the UK has ever made in dementia, thanks to the £290 million donation from founding funders the Medical Research Council, the Alzheimer’s Society and Alzheimer’s Research UK. I met the director of the institute during the inquiry and heard of the important work that it is doing.

The UKDRI has over 650 researchers working towards treatments and technologies to improve the lives of people living with dementia, with sites across all parts of the UK, including London, Cardiff and Edinburgh. The director, Professor Bart De Strooper, estimated that about a third of his researchers had been attracted to the UK from other parts of the world because of its infrastructure and research capabilities. That shows what a leading role the UK can be proud to play in this area—a world leader. With the Government funding for UKDRI running up to 2023, at which point progress will be reviewed, it is important that this vital asset in the UK’s dementia research system is supported to continue its work. We are only a year away from that, so I hope the Minister is able to say more about that.

There is also great research happening across the UK in the area of care research. We heard from Professor Dame Louise Robinson, who leads an Alzheimer’s Society-funded centre of excellence in Newcastle University. These centres of excellence, which also have sites in Exeter and London, bring together leading researchers to investigate how people with dementia can best be cared for. I am conscious of the interventions that hon. Members made earlier. That research is valuable to those people who currently have dementia in looking at how we can make sure they are properly cared for.

What is concerning is that, although there is a plethora of evidence of how effective care research is, it is not being used. In contrast to the principle of evidence-based medicine and evidence-based care, it is not actually being used, which is staggering. Again, I would be very grateful for the Minister’s thoughts on that. Can I just mention this figure? In a review of 170 training manuals for person-centred care in dementia, researchers found that just four—four—provided evidence about what methods worked when tested in a research setting. That is what we are using to train our carers. There is an evidence base, yet it is not being used to underpin that training. We need to do much better on that.

The UK has come a long way in improving our dementia research sector, but it is imperative that we build on that. People living with dementia and their families deserve to see the Government delivering on their general election commitment to dementia moonshot funding and leadership in dementia research such as we saw with the covid vaccine development. I urge the Minister to liaise with the Treasury in the run-up to the spring statement next month and to deliver for the dementia research community and for the country. We can be a world leader in the field, but that will need the Government to fulfil their commitments.

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[Andrew Gwynne]

My hon. Friend makes a crucial point. There has been a perfect storm. As we have heard, there is a growing list of people waiting to be diagnosed properly with dementia as a consequence of the covid pandemic, and, as she rightly says, the very research groups doing in-depth analysis and research into this disease are largely reliant on charitable sources of funding, which have almost completely dried up over the course of the pandemic.

[Debbie Abrahams]

I was going to mention this when I wind up, but I could not agree more. Funds to medical research charities, such as Alzheimer’s Research UK and the Alzheimer’s Society, have more or less halved—an awful impact.

[Andrew Gwynne]

Absolutely. This is a crucial point and it is why the Government really must come good on their promises.

I also hope the Minister will update the House and give us a timetable for the publication of the dementia strategy. Patients living with dementia, and their loved ones, cannot wait for the Government to get their act together. We need a plan and we need it to go much faster to develop treatments to change lives. The Government must deliver now on their 2019 dementia moonshot manifesto promise to double Government funding into dementia research. No more excuses: that promise needs to be kept. As we have heard, funding is needed now more than ever in a research landscape that has been decimated by covid. Not only have charitable donations dried up, but a survey from Alzheimer’s Research UK found that more than a third of dementia researchers were considering leaving, or had left, academic research due to uncertainty around funding opportunities.

I want to raise the point made by my hon. Friend the Member for West Ham (Ms Brown) in an intervention on the hon. Member for Rutherglen and Hamilton West. She rightly made the point that too often these research projects are not necessarily seen as sexy. We have to make sure that that is not the case, because as I have said, they are so crucial. Labour is committed to doubling dementia research spending to over £160 million a year and to playing our part in finding a cure for this cruellest of diseases. That is a part of our commitment to not only protect but enhance the UK science base and achieve 3% of GDP spending on science and research across the economy.

Patients and their families must be a priority. That starts with dementia research, improved early diagnosis and world class clinical trials. Our goal must be to prevent, treat and ultimately cure this complex and often heartbreaking condition. That is why Labour’s suggestion of a 10-year plan of investment and reform for older and disabled people, including those with dementia, is so important. It would ensure that more people could access care and live in their homes for longer, while being supported by carers paid a proper living wage of £10 an hour.

British people deserve better. We need to meet the challenges of this century of ageing. We need to learn from the pandemic, because there are so many lessons that we can put into ordinary life. We need to treat those who are diagnosed with dementia with the respect that they deserve. This is not a party political point; there is unanimity across this House of Commons. We must redouble our efforts on research for dementia to improve care and support and, ultimately, to find a cure for this dreadful disease.

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[Debbie Abrahams]

Let me start with some thank-yous. I thank all the speakers who contributed to today’s debate on dementia research, which is absolutely essential for the reasons that many of us have discussed. I am very grateful to every Member who shared their personal stories and experiences.

This is not something that will go away. We will see an increase in people with dementia, but it does not need to be that way. Before I go on to what we need to do and comment on the Minister’s winding-up speech, I pay tribute to my constituency, where we have 3,000 dementia friends. I was the first MP to train as a dementia friends champion; I deliver sessions on the subject across my constituency, and our youth council has taken part in this, too. It is an important way that we can drive up awareness, because so many people have personal experience of the effects of living with dementia. We have an annual memory walk, and many of our retailers have undertaken training, so that when someone gets to a checkout but does not know what they are there for, or what money they need to pay for the goods, there is understanding, rather than tut-tutting.

I worked hard with the Minister over a number of years when he was co-chair of the APPG. There is absolutely unanimity here—my hon. Friend the Member for Denton and Reddish (Andrew Gwynne) referred to it. Members on both sides of the House need to do more. Unfortunately, what has happened so far is not enough. We need to ask the Government to stump up for the commitments that they made in the 2019 general election.

The money that has gone on neurodegenerative diseases research covers a much broader spectrum of diseases than those that contribute specifically to dementia. The early career researchers fund covers all diseases, not just those specifically focusing on dementia. The families of people with dementia deserve better. They deserve delivery on a promise that was made to them more than two years ago. The impact that dementia is having on people’s lives cannot be underestimated.

There is a lot more that can be done. We can have screening programmes, like those that we have for breast, cervical, prostate and bowel cancers, for people in their early 20s and 30s. Diagnostic tools have been developed to enable diagnosis to happen sooner, rather than later, so that dementia does not have an impact on people as they grow older and it is picked up early. It is not good enough for the Government to say, “This is what we are doing.” They really need to deliver.

I hope the Minister will take this message back to the Treasury, so that there is an announcement in the spring statement. I know the Minister is personally committed to this issue, but the Government need to back him up.

[Mr Deputy Speaker]

As the Minister said, this has been a significant debate on the last day before the week’s recess. I have been an MP for 30 years and I remember that one of my first surgery cases was a lady who came to see me. Her husband had a very senior position and was well respected throughout the community but he had succumbed to the cruelty of dementia. She broke down in tears as she told me how she had had to put post-it notes all around their home in order for him to know where the cups were and things like that. My eyes welled up listening to her story. It is such a cruel condition, and we wish everybody working in dementia research in the UK and throughout the world well in order that they can protect lives in the future.

Question put and agreed to.

Resolved.

That this House has considered dementia research in the UK.