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Baroness Greengross
To ask Her Majesty’s Government what assessment they have made of the recommendations in the report by the All Party Parliamentary Group on Dementia Fuelling the Moonshot, published on 8 September. (Dinner break business, 1 hour)
Baroness Greengross (CB)
My Lords, since 2015 dementia has been the leading cause of death in the UK, and there are currently 850,000 people who are living with the condition in this country. Of course, there are many different types of dementia, which all have very different symptoms and progress at different rates. We know that in the coming years the number of people living with some form of dementia is projected to increase significantly. This will place an even greater strain on our health and care system.
Research into dementia is critical. It may help prevent the occurrence of these conditions and will certainly allow people living with them a better quality of life. Dementia does not just affect those who have the condition; it also has a profound impact on family, carers and loved ones. Many of us in this Chamber will have experienced seeing someone we care about getting dementia and wanting to do anything we could to ease the suffering for them and those who support them. I declare my interest in the register as chief executive of the International Longevity Centre UK, which is currently working on a project analysing the impact of dementia on the high street and the retail sector. The growing number of people living with dementia will impact on the whole of society and have a significant economic impact as well.
In the 2019 general election, the Conservative Party made a commitment to bringing forward a dementia moonshot and
“doubling research funding into dementia”
over the next decade. Figures from the National Institute for Health Research show that this would increase government investment in dementia research from £83 million a year to £166 million, although I gather the Government’s figures differ from this. I am sure the Minister will respond on this point.
The Government have confirmed on many occasions that they intend to uphold the promise to double dementia research funding over the next decade. However, to date, they have announced no details of this. In early 2021, the All-Party Group on Dementia, which I co- chair with Debbie Abrahams MP, held an inquiry into the state of dementia research in the UK and investigated how this funding could best be used to support work in this field. The inquiry found that funding for dementia research was lower than that for other medical conditions; for example, funding was three times higher for cancer research than for dementia. However, the UK has to date been a world leader in dementia research, with only the United States spending more on research into these conditions.
The pandemic has taken a serious toll on dementia research, with many programmes having to be paused or even abandoned during 2020. One serious issue has been the reliance on charity funding, which in this country makes up 51% of dementia research funding. As we know, the economic conditions we now face due to the pandemic have considerably reduced charities’ ability to fundraise. The other factor has been the impact of Covid-19 on people already living with dementia. In the first 12 months of the pandemic, it is believed that 34,000 people who died of Covid-19 also had some form of dementia. One area that needs greater research is the impact of Covid-19 on those with dementia, as there is some evidence that the symptoms differed in Covid-19 patients who did not have dementia, and the Covid-19 mortality rate for those with dementia was considerably higher. Due to the need for social distancing to stop the spread of the disease, much of this or other ongoing dementia research could not take place.
There is evidence that there are at least 12 modifiable risks that can help reduce dementia. While research has shown that there are actions we can take individually and as a population to prevent some forms of dementia, very little is being done in the way of public education and awareness.
The other area of research that surveys show has strong public support is improving early detection. Some medications available on the market can slow the progress of some dementias, at least for a small amount of time, and early detection provides the best opportunity for these treatments to work. There is also some evidence that social prescribing, particularly exposure to art and music—particularly music, I think—can play a positive role in delaying the progress, or improving the quality of life, for those who have received an early diagnosis of dementia.
A few years ago, I had the privilege of going to an orchestral performance conducted by a gentleman who had had dementia for over 20 years. He had not been able to speak for many years, yet he often hummed tunes, and a group of music students were able to transcribe his music and perform it in a big concert hall. Seeing this man with dementia come alive, as he conducted the orchestra playing his music, was a very moving experience for me and taught me the importance of social prescribing. This is simply one area where we can learn so much more.
One of the concerning findings of this inquiry was the lack of evidence-based care approaches when supporting people with dementia. The Wellbeing and Health for People Living with Dementia project, funded by the National Institute for Health Research, starkly demonstrated this lack of evidence-based care. In a review of 170 training manuals for person-centred care in dementia, researchers found that only four provided evidence that methods had worked when tested in a research setting.
The all-party report made a number of important recommendations, including: that a priority for new dementia research funding should include investment in novel methods for early diagnosis, such as blood and other biomarkers; confirm appropriate funding for the UK Dementia Research Institute for at least the next 10 years; and build on the success of the multidisciplinary approach of the Alzheimer’s Society’s centres of excellence model and further expand this by introducing three new centres that will focus on some of the biggest challenges in dementia research. It also recommended that the Government should establish a specific fund of £40 million to support both clinical and pre-clinical postdoctoral research positions and talent retention in dementia research, and that the Government should develop a Longitude Prize for dementia, which would support the development of novel technologies. It also recommended that Join Dementia Research become an opt-out model and that data gaps in this programme should be addressed by integrating it with electronic patient records. Lastly, it recommended that the new Office for Health Promotion should launch public information campaigns which would explain how the public can take steps to reduce their dementia risk.
Finally, I acknowledge the Government’s recent announcement that they will spend £95 million on the delivery of their Life Sciences Vision and £2.3 billion to transform NHS diagnostic services. Can the Minister please clarify how this funding will benefit those people living with dementia and the dementia research community as a whole?
Baroness Ritchie of Downpatrick (Lab)
My Lords, I congratulate the noble Baroness, Lady Greengross, on securing this important debate and on all the work that she does as one of the co-chairs of the All-Party Parliamentary Group on Dementia.
I welcome the APPG’s report into the current state of dementia research in the UK, in which evidence was taken from world-leading researchers and academics, research institutions, charities, participants in research and people affected by dementia. In fact, the noble Baroness, Lady Greengross, has this evening characterised the main features of the report and the main recommendations, on which all Members right across this House demand action from the Government.
As the noble Baroness has said, at the 2019 general election the Conservative Party set out its plan to implement a “dementia moonshot” that would double government funding for dementia research by over £800 million, increasing annual funding from £83 million to £166 million a year over the next decade. Sadly and unfortunately, that funding has not yet been realised. When will that funding be provided?
I come from Northern Ireland, where the situation is much worse. In fact, we require assistance, funding and staff resources for the actual diagnosis of dementia. I reside in a health and social services trust area where the figures for dementia, for the actual diagnosis and those waiting a diagnosis, are much greater than in other parts of Northern Ireland. That trust resides 23 miles south of Belfast.
I am only too well aware of the personal impact of dementia on people’s lives. I had two political colleagues who passed away last year with dementia. Up until the onset of their illness, they lived full and active lives, serving their constituents and making a contribution to society, underpinned by the principles of social justice. Sadly, they were unable to enjoy the fruits of retirement because they began to suffer from memory loss, from body depletion and many other physical issues.
I learnt through the news last week that a young lady from Derry, in her mid-50s, who has dementia but could be cared for at home is unable to come home because of the problems of insufficient care packages and funding for them. This is exacerbated by the Covid pandemic. Insufficient care packages, insufficient funding dedicated to them, combined with all the problems of Covid has led to a very serious situation for dementia sufferers.
In that respect, the report from the noble Baroness, Lady Greengross, is very apt at this particular time and needs to be acted upon by the Government. The need for the investment of money and medical nursing staff in the Covid pandemic has delayed the deployment of resources in evidence-based research for dementia care. The APPG’s report Fuelling the Moonshot sets out the current issues facing the dementia research sector in the UK. It highlights examples of where the UK is leading the way in research, and highlights the areas where the promised funding could best be used to cement its place as a world leader in dementia research. The report also refers to the many areas that have experienced difficulties because of the pandemic, including early career researchers, and recommends how they could be supported. I am very pleased to say that Fuelling the Moonshot makes several other recommendations on how biomedical care and prevention research can be supported by the moonshot funding, and sets out how participation in research can be encouraged.
Tonight, along with the noble Baroness, Lady Greengross, and your Lordships’ House, I would urge the Minister and the Government to bring forward that important funding as quickly as possible, with a timeframe for how the funding will be realised, for how it will be implemented and the schemes and programmes in which it will be implemented. When will that happen? Could the Minister outline the specifics in terms of dates for the provision of funding and staff for care, treatment and research? Clarity needs to be provided on how the funding will benefit those living with dementia and the dementia research community.
There are various areas of research where work is required, such as prevention research, biomedical research, early detection and diagnosis, and care research and technology. It is also important for the Government, along with the NHS and the voluntary organisations, to promote the value and benefit of participation in research.
In that respect, I agree with the recommendation that the National Institute for Health Research, the Government and the NHS should work together to drive up participation in dementia research by making JDR—Join Dementia Research—an opt-out service for new dementia patients. I know from the work of Dementia NI that they have four main aims: to challenge the stigma of having a diagnosis by raising awareness about dementia; to promote the right for people living with dementia to be involved in decisions that affect their lives; to provide training, education and awareness to organisations and the public on how to best support people living with dementia; and to support people living with dementia to raise awareness of dementia in their own right. Many of those aims chime with the report just published and—shall we say?—unveiled tonight by the noble Baroness, Lady Greengross.
It is not sufficient to congratulate the noble Baroness; the Government should recognise and acknowledge that action will be taken in this important area. Obviously, there are difficulties, compounded by Covid and the need for essential care packages, but let us hope that there is a resolution in sight. I look forward to the Minister’s response and hope that he and his ministerial colleagues can find the resources to fulfil these recommendations and their own manifesto commitments.
Baroness Brinton (LD) [V]
My Lords, I add my congratulations to the noble Baroness, Lady Greengross, on securing this important debate, and to the All-Party Parliamentary Group on Dementia on the publication in September of the very powerful report Fuelling the Moonshot. I also thank Alzheimer’s UK and the UK Dementia Research Institute for their briefings. It is especially good to see the research side and the community-facing side coming together to work. I have seen this in the arthritis field, and there are real benefits it can bring.
There is nothing to beat evidence-based care, as the noble Baroness, Lady Greengross, has already said. She noted that 850,000 people are living with dementia, and that the number will increase as we in the baby-boomer generation come to our later years. Some 11% of deaths in 2020 were from Alzheimer’s and dementia. But past data on the number of dementia deaths is difficult to ascertain. My family knows about this from our own experience. In my father, a broadcaster and later an MP 40 years ago, who died over a decade ago, we saw the consummate communicator that he was change as vascular dementia took over. When he finally went into hospital and died, it said “cancer” on the death certificate. My stepmother had to ask for “dementia” to be added. His last years were blighted by dementia, but it appeared then that it was not recognised. It was added—although in a different-coloured pen, which seems bizarre. Even that caused problems later, with people querying why a cause of death had been added in a different colour. So it is good that it is now routinely listed on death certificates, and I thank my stepmother and those like her who, over the years, have fought for this to happen.
It is shocking that dementia research has been funded so poorly compared with many more “attractive” medical issues, given the high number of people who have it. But it is not just an issue of research; the current crisis in social care speaks volumes about the way dementia and elder care are funded by the state, and how they are misunderstood or even ignored by too many of the public. Today’s debate is about finding that elusive cure, and this report is excellent for setting out a road map for the Government to help fund, facilitate and encourage.
The words in the Tory manifesto, already mentioned by other noble Lords, are absolutely clear and set out in the moonshot report. The Conservative Party’s 2019 election manifesto made a commitment to save millions of people and their families from suffering the agony of a slow decline due to dementia. The party promised that it would make
“finding a cure one of our Government’s biggest collective priorities—one of the ‘grand challenges’ that will define our future … This will include doubling research funding into dementia and speeding up trials for new treatments.”
The party also committed to investing
“more than £1.6 billion … into research over the next decade to find a cure for dementia under a Conservative majority government”,
which would provide the
“largest boost to dementia research ever in the UK … double current funding levels”
and set
“Britain’s finest scientists to work on a ‘Dementia Moonshot’”.
These are fine words, but worryingly, in the Budget, Rishi Sunak announced a two-year delay to the funding of the £22 billion “sciences superpower”. Can the Minister say if this includes a delay to the £1.6 billion promised for dementia research in the manifesto? The wording in that Tory manifesto is unequivocal: it is
“one of our Government’s biggest collective priorities … that will define our future”—
except that if it is delayed, it is not. If there are concerns about it being included in the delay, I hope the Minister will undertake to put pressure on the Chancellor to ensure that dementia research is not part of this delay.
The recommendations in the report set out a number of key methods for achieving the moonshot, and I want to address one or two of them. The first is the
“novel methods for early diagnosis, such as blood and other biomarkers”.
It is noticeable that other diseases have benefited from such research. For example, 30 years ago someone with suspected coeliac disease could be diagnosed only by going into hospital and having a very uncomfortable gastroscopy procedure. Now, a simple blood test tells your GP if you have the markers, so you can then be referred speedily to a gastroenterologist. Other autoimmune diseases have benefited from similar ground-breaking research. Inflammation markers found through regular blood tests are now commonplace; I have blood tests monthly to monitor mine. There are many other markers that provide early diagnosis for other diseases, but not yet for dementia. Many other biomedical and translational research for other diseases, notably cancer, have also had access to long-term government planned funding, but not yet dementia.
For me, the most exciting moonshot report recommendations are about creating more centres of excellence and ensuring that anyone newly diagnosed gets the support they need at the start of their journey. The practical multidisciplinary approach is already using technology to help people to live well with their dementia. Professor David Sharp, the director of the DRI Care Research & Technology centre at Imperial College, is using technology in a pilot to help people living with dementia avoid hospitalisation. It is shocking that 25% of hospital beds are currently taken up by people living with dementia. These new technologies can monitor people in their homes and enable the early identification of risks such as sleep disturbance, incontinence, or infections. They know that this works. The early detection of these risks could enable people with dementia to live at home safely for longer. Access to that funding would allow the trials to happen on a larger scale, and then perhaps become commonplace. There is another benefit too: it will reduce the costs to and pressures on our hospitals.
I move now to the workforce to deliver the moonshot. The fourth recommendation in the report is
“to establish a specific fund of £40m to support both clinical and preclinical postdoctoral research positions”.
These are vital if talent is to be attracted and retained in dementia research. Can I ask the Minister if this is also part of the manifesto promise and if it, too, might be delayed? Dementia has in the past been a poor relation, and it becomes harder to attract clinical postdoctoral research students. If there is no money, there are no students, and no students means no future research scientists and professors, and without a long term well-funded scheme it will not get the momentum that it so badly needs.
There is a particular importance in attracting talent from abroad, which our universities and research establishments have thrived on for many years. On the power of research funding, the report says:
“The creation of institutions like the UK Dementia Research Institute has attracted world-leading talent to the UK from across the globe.”
It says that the director of the UK DRI, Professor Bart De Strooper, estimates
“that around a third of its research Group Leaders have come from overseas”,
and that he
“himself moved to the UK to lead”
the work here,
“being impressed by the UK’s research infrastructure and ambition to be a world leader in the field.”
However, we know that, at present, it is harder to attract first-class talent from abroad, so a scheme such as this, with government support, would be very beneficial.
For the UK DRI’s new report, Race to Cures, it conducted a survey of more than 200 researchers, which found that 90% think that new treatments for dementia will be found in the next 10 years. Nearly three-quarters think that the pace of discoveries and breakthroughs is increasing, and 100% think additional funding is important to enable breakthroughs. As someone who has seen grandparents and parents living and dying with dementia, I am really encouraged that researchers think new treatments will be found within the next decade. But that cannot happen on thin air, and the moonshot report from the all-party group sets out the mechanisms by which the Government can deliver their manifesto promise. I urge the Minister to help deliver the funding needed to make this a reality, so that dementia is no longer a grim sentence that people really fear.
Baroness Thornton (Lab)
My Lords, I first thank the noble Baroness, Lady Greengross, for this short but very important debate today. It is some time since we addressed the issue of dementia in your Lordships’ Chamber, and it is something which noble Lords have had an interest in for many years. I also thank her for her very comprehensive introduction to the debate.
If the Minister has not worked it out by now, he is being asked to pick up the dementia moonshot and champion it in Government and with his colleagues because, at the moment, as other noble Lords have said, the Government have not brought forward the promised funding or set out a timetable for when it will be met.
We all have had experience of dealing with this awful condition and losing the people that we love to its ravages—or at least losing the essence of them, long before they die. In my case, it was an aunt and also a brother-in-law, who was the same age as me and who I had known since we were both involved in student politics. He sadly spent the last few years of his life in a nursing home and died during lockdown, but he had not known any of us in the family for quite some time.
I congratulate the APPG on the Fuelling the Moonshot report, following its inquiry into dementia research and the potential impact of the Government’s manifesto commitment to double funding for dementia research. The primary recommendation in the report is, of course, that the Government deliver on their manifesto commitment and double funding for dementia research. I think we all strongly support this recommendation.
How do the Government plan to address the three main areas that Alzheimer’s Research UK believes this additional funding should be channelled towards if we are to accelerate progress in dementia research? The first of these three areas is to help dementia research recover from the impact of the pandemic. Dementia research lacks capacity compared with other disease areas, as other noble Lords have said. It is vital we do not let the financial impact of Covid-19 reduce funding opportunities, leaving researchers with no choice but to leave the field. Indeed, a survey by Alzheimer’s Research UK found that more than one-third of dementia researchers were considering leaving, or had left, academic research due to the financial uncertainty created by the pandemic.
The second area is transforming early detection and diagnosis. An early and accurate diagnosis of dementia can empower people to access the support they need at an earlier stage, as well as to ensure that they can enrol into clinical trials for new treatments. At the moment, people living with dementia are often diagnosed at a stage when the disease that caused the condition has progressed too far for potential future treatments to be effective. Patients in many parts of the country do not have access to the latest diagnostics that provide the most accurate results and often experience long delays before receiving a diagnosis, even today. Alzheimer’s Research UK’s dementia attitudes monitor found that there was an appetite for earlier diagnosis, with 73% of the public saying they would want to know if they had Alzheimer’s disease before the onset of clinical symptoms.
Thirdly, I am sure the Minister would absolutely want to see the UK be the world leader in dementia clinical research. Given the world-leading institutions and researchers in the UK, this country has the potential to be a leading location for dementia clinical trials, which would allow patients here to be among the first to benefit from potential new treatments. The UK Government should invest in the development of a network of high-performing dementia clinical trial sites. They should look to emulate the success of the Covid-19 trials, for example, using lessons learned to speed up the approval process and generate a cohesive network of sites with a single point of entry for trial organisers. Given the Minister’s brief in the Government, I would have said that this absolutely played to his strengths.
It is a great shame that the comprehensive spending review was a missed opportunity for the Government to deliver on the moonshot commitment and harness the power of research to tackle one of the world’s major health challenges. The CSR announced £95 million for the delivery of the Government’s life sciences vision and £2.3 billion to transform NHS diagnostic services, but we need to see more detail on how that funding will benefit those living with dementia and the dementia research community.
On 7 September the Prime Minister was asked in the Commons whether the Government would fulfil the commitment in the Conservative manifesto to a dementia research moonshot. He replied:
“I can certainly confirm that the moonshot programme that was begun by my right honourable friend the former Secretary of State for Health—one of his many moonshots—continues.”—[Official Report, Commons, 7/9/21; col. 166.]
That is slightly ambiguous and certainly flippant. I hope the Minister will rectify that flippancy.
The Autumn Budget and the spending review published on 27 October did not include a reference to a dementia moonshot funding pledge. Reacting to the Government’s spending commitments, the director of UK DRI, Professor Bart De Strooper, said that the omission was a setback to those working to deliver cures for dementia. The absence of a dementia moonshot today is a major blow to UK neuroscientists racing to find cures for this devastating disease, not to mention the 885,000 people living with dementia in the UK and their friends, families and carers. I look forward to the Minister’s response.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Kamall) (Con)
My Lords, I am grateful to the noble Baroness, Lady Greengross, for securing this important debate. On a personal note, I thank her for the time she took earlier this week to discuss some of her priorities and experiences with me. I think we all know people—family or others—who have experienced dementia, so we have seen it first-hand. As we look at our ageing society, as we get old and the medical technology gets better at keeping us living physically longer, one of the issues that we will face more and more is dementia and Alzheimer’s.
I know that all noble Lords will pay tribute to the noble Baroness, Lady Greengross—indeed, they have done—as a co-chair of the All-Party Parliamentary Group on Dementia. I thank all noble Lords who have spoken so well today and conveyed such emotion and facts in such a short time. I am sure all noble Lords would like to express our thanks to the APPG on Dementia and to all those who contributed to the report for all the work that they put into the inquiry.
The recommendations in the report are incredibly timely since the Government are developing our new dementia strategy. The strategy will set out plans for dementia in England for future years, including our ambitions for dementia research. We will work closely with patients, researchers, funders and charities to incorporate things from the report into the development of the strategy.
I now turn to the central recommendation within the APPG report which is for the Government to deliver the dementia moonshot. As the report sets out, the Conservative Party’s manifesto committed to doubling funding for dementia research and delivering a moonshot. The moonshot will expand the UK’s internationally leading research effort to understand the mechanisms underlying the development and progression of dementia, deliver new therapies, enable people to live better with dementia, and look at ways to help prevent the condition.
We remain committed to supporting research into dementia and UK researchers are at the forefront of global efforts. The Government spent nearly £420 million on dementia research from 2015-16 to 2019-20. This was significantly ahead of our commitment to spend £300 million in this period, as set out in the Challenge on Dementia 2020.
We know that we need to go further to accelerate progress against this condition—progress towards the moon, if you like. However, increasing research spend takes time. One of the things I hear when talking to others about increasing research is that capacity building cannot be done at the press of a button. In addition, as I am sure noble Lords appreciate, in the current Parliament, the research system has been diverted to help combat the global pandemic, with all hands on deck and everyone focused on that.
In 2019-20, the most recent year for which spending figures are available, the Government spent over £75 million on dementia and neurodegeneration research. We have committed to maintaining at least this baseline level of spending, which equates to spending £375 million over the next five years.
The £5 billion investment in health-related research and development announced in the 2021 spending review reflects the Government’s commitment to supporting research into the most pressing health challenges of our time. Clearly, dementia is way up that list. We are working across government to finalise the outcomes from the spending review and identify ways to significantly boost research on dementia to support the delivery of the moonshot. I am, and will be, speaking to colleagues across government about achieving this.
In the meantime, rather than just waiting, we have been taking positive actions so that we can prepare the ground. This includes the launch of a highlight notice on dementia within the National Institute for Health Research. This invites ambitious dementia research applications and signals to the community that dementia is a priority area for the NIHR. I am encouraged that dementia researchers are coming forward with proposals in response.
This Government are committed to supporting dementia research across the translational pathway, from basic science, to understanding the causes of disease, through to applied research on treatments, care and quality of life, as well as public health prevention. Through the UK Dementia Research Institute, scientists have made huge leaps in understanding the mechanisms underlying disease progression, and researchers have developed potential new diagnostics and treatments.
The Dementias Platform UK has established technology-based networks to better understand how dementia starts and to support experimental medicine studies. In partnership with the Alzheimer’s Society and Alzheimer’s Research UK, people with dementia and their carers continue to be recruited, via Join Dementia Research, to take part in a range of important research. Through our NIHR research, we are supporting high-quality studies on lifestyle prevention, service provision, care and care technology.
I will now cover the specific questions rightly raised by noble Lords. The Government are committed to delivering on dementia research as much as possible; I am sure noble Lords understand the hiatus due to the focus on Covid. As we continue to look at Covid—although not necessarily beyond it; it may be with us for some time and we may well be looking at annual boosters, for example, and managing Covid in the same way that we manage flu—it is important that we consider how we deliver the dementia moonshot. We are discussing across government a timetable for the delivery of this as well as the timetable for doubling the funding. Increasing research takes time and, as noble Lords will understand, a lot of stuff has been diverted to help combat the global pandemic. However, we will set out plans for dementia, including research, for future years.
We also recognise that Covid-19 has caused problems across the sector and many researchers, including dementia researchers, are considering leaving academic research—as noble Lords pointed out—due to the financial uncertainties created by the pandemic. I assure noble Lords that Ministers and government officials have been liaising closely with medical research charities to understand the impact of the pandemic, identify how we can work together and ensure that patients benefit from charity-funded research. Most recently, BEIS and the DHSC have announced a £20 million support package, which will support early-career researchers funded by charities, helping to protect the pipeline of talented researchers who play an important role in delivering patient-saving research.
The report contains a recommendation to maximise the success of the Join Dementia Research platform. I assure noble Lords that increasing participation in all types of research is incredibly important, as part of our life sciences vision and of global Britain. As set out in the UK vision for clinical research delivery, our ambition is to ensure that the UK has the most advanced and data-enabled clinical research environment in the world.
This plays to my portfolio and two of my priorities. One is digitisation and sharing data, and the second is ensuring, across government, that the UK is a hub for life sciences. That includes research, trials and medical studies. We will build on digital platforms like Join Dementia Research to improve our ability to recruit patients to studies and ensure that participating in research is as easy as possible.
The NHS is one of the most trusted organisations in the UK, and our priority is to ensure the highest standards of data transparency and accountability. Only today I was on a call with an individual who has been helping us make sure we have trusted research environments, so that people can be confident about their data being shared appropriately.
The APPG report recommends that we move Join Dementia Research to an opt-out model, but this would not meet the standards or patient expectations around how our data is used. However, we are building on complementary platforms such as NHS DigiTrials to support the best use of data to facilitate recruitment to clinical trials. Join Dementia Research will play a key role alongside this development to ensure that all potentially eligible participants are invited to participate in studies relevant to them.
Noble Lords mentioned the Life Sciences Vision that we published on 6 July 2021. It set out our commitment to improve translational capabilities in this research, so that new treatments reach patients faster. We are looking at ways to continue to make funding available for dementia research through UK Research and Innovation and the NIHR.
We support dementia research by funding a range of ground-breaking research. Besides the NIHR, the Medical Research Council supports dementia research across the discovery and translational pathway. Through the UK Dementia and Research Institute, significant advances are being made in understanding disease mechanisms. The Dementias Platform UK, a unique public-private partnership, has established a technology-based network. Also, the Medical Research Council funds longitudinal population cohorts, which provide opportunities for dementia researchers to exploit data-driven science—for example, through the UK Biobank, which provides by far the world’s largest programme for genotyping and brain-body imaging.
We recognise that Covid-19 has caused problems across the sector and for many medical charities, which we recognise are a vital part of this. I reassure noble Lords—even if I have said it before—that we are liaising with medical research charities to understand the challenges they face, and to help them through it.
Government responsibility for delivering dementia research is shared between my department, the Department of Health and Social Care, with research delivered by the NIHR, and BEIS, with research delivered by UK Research and Innovation. In 2019-20, the NIHR spent £29 million on dementia research, and UKRI spent £46.7 million. The charities Alzheimer’s Society and Alzheimer’s Research UK are also funders of dementia research. We are working in partnership with those two charities, and with the UK Dementia Research Institute, which is a significant part of the ecosystem.
A number of noble Lords raised the issue of early diagnosis. We support a range of issues in this important area. For example, at the UK Dementia Research Institute, scientists are trialling technologies such as cameras and sensors to detect dementia earlier. Dementias Platform UK is undertaking research on wearable devices which can monitor the progression of Alzheimer’s disease, and the NIHR recently launched the £9 million programme that we talked about.
During our one-to-one conversation, and in the debate tonight, the noble Baroness, Lady Greengross, mentioned arts-based interventions. I know that I will be facing an OPQ on this. As I have mentioned before, as an amateur musician—let me stress “amateur”—I say that we all know the role that music plays and the way it touches our hearts as well as our minds. There is no better buzz or thrill than being a live musician, playing in front of a live audience and seeing them respond. When I say “respond”, I mean hopefully in a positive way. In fact, you see how people feed off each other, and that energy helps you connect with people. It touches hearts and minds, affects your mood and quite often helps unlock people. It is a way of people expressing themselves in a way that they would not do ordinarily.
We understand that arts-based interventions such as music therapy can play an important role, along with social prescribing, which is currently being rolled out across the NHS for local agencies. We will set out some of these plans in future years. Let me give a couple of examples of projects we are working on. The MARQUE project, jointly funded with the ESRC, is looking at care home staff and non-drug treatments for agitation in people with dementia; the WHELD programme is helping the well-being of people with dementia living in care homes; and there is the IDEAL project.
I am sorry that I have overrun in my enthusiasm for arts-based subjects. There are other issues that I wanted to touch on, including capacity building. But let me end by saying this: we need to continue to build on our success to accelerate progress in dementia research, but we cannot do this alone, especially when there are so many experts among noble Lords and across government, but outside government as well. By working across government, co-operating with charities and the research community, and recruiting people with dementia, we hope to bring forward ambitious plans in our new dementia strategy.