- PM to announce £48 million industry partnership to back dementia research and speed up the development of new treatments
- Dementia to be one of the first priorities for the new Health Data Research Service that will join up NHS and research data for the first time to help new drugs reach patients faster
- Comes alongside commitment to deliver a new National Care Service and reform social care to improve support for people living with dementia and their families
The Government is investing £33 million through the Dame Barbara Windsor Dementia Goals programme, alongside funding from Bristol Myers Squibb, GSK and Gates Ventures, to tackle one of the biggest barriers to dementia research: recruiting enough people into clinical studies to test promising new treatments.
The investment will support the work of The BARBARA Alliance, a UK-wide not-for-profit partnership bringing together government, industry, academia, charities and people with lived experience of dementia.
Its flagship programme, BARBARA, will create a single, co-ordinated platform linking the UK’s health data, research and clinical trial capabilities, making it easier for researchers to find participants and for people across the UK to take part in studies. By tackling one of the biggest bottlenecks in dementia research, the programme will help speed up clinical trials and bring promising new treatments to patients faster.
Dementia remains one of the greatest health and social care challenges facing the country. Nearly one million people are living with the condition in the UK today, and around one in two people will be affected by dementia in their lifetime, either living with the condition, being a carer or both.
The condition places enormous pressure on families, carers, the NHS, and social care services. Dementia is estimated to cost the UK more than £42 billion a year, with the vast majority of costs falling on social care and unpaid care provided by family and friends, and the cost to the NHS at £7 billion.
Yet too few people currently take part in dementia research, compared to other diseases. Anybody over the age of 18 years old can sign up, with or without a dementia diagnosis or memory concerns through the NIHR’s Join Dementia Research service. Taking part gives people the chance to contribute to the search for better treatments and help bring hope to the millions of families affected by dementia.
Speaking ahead of the Innovation Nation Summit, the Prime Minister said there was no reason why Britain could not lead the world in the search for new dementia treatments and that for too long dementia has been treated as something to be managed later on in life rather than a condition which can be properly treated and ultimately cured.
Today’s investment forms part of the Prime Minister’s wider mission to improve support for people living with dementia and their families. Alongside plans for a National Care Service, the Government is backing research that could help people live independently for longer and ease pressure on health and care services.
Prime Minister Andy Burnham said:
Dementia is a devastatingly cruel disease, not only for those who live with it, but for the families who care for them. For too long, we have accepted dementia as something to be managed later in life, rather than a disease we can defeat. I don’t accept that. In fact, I have real hope that we can come together and do exactly that.
I want Britain to be the country that makes the breakthrough and delivers the cure for dementia the world has been waiting for. That is why I am making dementia research a national priority - by backing the NHS, universities, researchers and industry to drive the breakthroughs we desperately need.
This investment goes hand in hand with our plans for a National Care Service, helping ensure that people living with dementia get the care and support they need, and giving families peace of mind that their loved ones will be cared for.
Health and Social Care Secretary, Yvette Cooper said:
This cruel disease has done so much damage to families across our country, and for too long we have lacked the tools to fight back. This investment will help us turn the tide on dementia, helping us to speed up diagnosis, accelerate research and give more people the chance to take part in trials that could transform their futures.
We are also determined to ensure that every person living with dementia gets the care they deserve, and that no family is left to fend for themselves when a loved one needs support. So, alongside this new investment, we will ensure that the treatment of dementia is one of the central priorities of our new National Care Service.
Hilary Evans-Newton CBE, Chair of the Dame Barbara Windsor Dementia Goals programme and Chief Executive of Alzheimer’s Research UK, said:
We know that people affected by dementia want the opportunity to be part of the search for better treatments. More than 90% we’ve surveyed told us they would like to take part in research, helping to shape a better future for everyone affected by the condition.
The BARBARA Alliance has been created to change that. By tackling the barriers to dementia research and speeding up recruitment to clinical trials, this funding will help more people contribute to breakthroughs in diagnosis and treatment.
CEO of the BARBARA Alliance Jessamy Baird MBE said:
The BARBARA Alliance was essential in clearing some of the barriers that are preventing our life sciences sector from delivering new treatments to patients.
What makes us different is our work across the whole sector, working with people with lived experience of dementia, charities, commercial companies, the NHS, and regulators,
Taking part in a trial not only means that someone can contribute to the future course of the disease, they also get the opportunity to receive interventions, treatments and better care, which can help them and their loved ones.
Kaivan Khavandi, SVP, Head of R&D Translational & Development Sciences, GSK said:
Our partnership in The BARBARA Alliance is a crucial step to advance research into dementia. By working together with the UK government and other partners, we aim to create a more dynamic and agile way to accelerate scientific trials. We’re proud to be a founding member and believe the partnership will help bring much-needed innovation to patients faster.
Ken Rhodes, Vice President of Neuroscience research at Bristol Myers Squibb said:
By bringing together unique datasets that advance AI/ML approaches, BARBARA will help the Alzheimer’s field ask better questions and accelerate progress for patients in need.
Consortia like The BARBARA Alliance are critical in Bristol Myers Squibb’s efforts to explore both symptomatic and disease-modifying approaches, all in service of our ultimate ambition to bring medicines to patients faster.
Niranjan Bose Managing Director, Health & Life Sciences, Gates Ventures said:
Recruiting the right people, at the right time, remains one of the biggest bottlenecks in developing new treatments for Alzheimer’s and other dementias. The UK has a remarkable opportunity to change that by bringing together its strengths in health data, the NHS, AI, research and clinical trials.
The BARBARA Alliance is exactly the kind of investment the field needs — making it easier for people to find and participate in research, while connecting data, research and clinical capabilities across the UK, and a faster path for researchers to evaluate promising new treatments and recruit participants more efficiently. Gates Ventures is proud to support this partnership and its ambition to turn scientific progress into treatments that reach patients faster.
The Prime Minister will also announce that dementia will be one of the first priorities for the new Health Data Research Service (HDRS), a flagship commitment of the Government’s 10 Year Health Plan and Life Sciences Sector Plan.
Backed by up to £600 million from Government and the Wellcome Trust, HDRS will bring NHS and research data from across the UK into a single, secure system for approved research. Scientists will be able to identify eligible patients and recruit participants more quickly.
Britain has some of the world’s most powerful health data, but it is fragmented across different systems and organisations. Joining it up will help researchers understand how diseases develop, find suitable participants and translate discoveries into treatments.
By making dementia one of its first priorities, HDRS will help cement Britain’s position as a global leader in dementia research while giving more people the opportunity to take part in cutting-edge studies and clinical trials. The service will also complement the work of The BARBARA Alliance, which will help more people take part in trials, while the Health Data Research Service will give scientists the evidence and insight needed to design better studies and drive new discoveries which could bring treatments to patients faster.
The announcement comes a week after the Prime Minister set out a new settlement for older people, bringing together a State Pension that continues to rise every year with plans for a National Care Service that would provide free personal care for older people.
As people live longer, the systems designed to support them have not kept pace. The current social care system is too often failing older people, their families and care workers, while placing growing pressure on the NHS. The proposed National Care Service would be built on the same founding principles as the NHS, ensuring everyone can access the support they need and helping people live independently for longer.
Under the plans, older people would be entitled to a basic level of free personal care, including support with everyday activities such as washing, dressing, eating and personal hygiene. The reforms are intended to give families greater peace of mind, protecting people from the fear that needing care later in life could leave them without the support they need.
As part of her review, Baroness Casey has been asked to provide recommendations on how and when to build up the national care service. Her work will include public deliberation to ensure the public’s priorities are reflected in recommendations and ongoing cross-party talks seeking to build political consensus.
Today’s announcement also follows the launch of UKRI’s £80 million Dementia Challenge last week, which will test nine innovative technologies in the NHS, including faster MRI brain scans and remote cognitive assessments, to speed up diagnosis and improve patient outcomes. The programme aims to help ensure 92% of people receive a diagnosis within 18 weeks of referral, up from around 60% today, by rapidly scaling innovations that prove they work in real-world settings.
Together with the new investment in clinical trials, this marks a major step towards turning Britain’s scientific strength into hope for millions of families affected by dementia, while reducing the financial burden on families and the state.