Dementia Research in the UK

Debate between Debbie Abrahams and James Sunderland

Thursday 10th February 2022 Commons Chamber

[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.