On 16 November 2021, the House of Lords is due to consider the following motion:
Baroness Greengross (Crossbench) 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.
Dementia describes a variety of brain disorders that trigger a loss of brain function. Although it is difficult to ascertain the exact number of people living with dementia, the World Health Organisation (WHO) estimates that more than 55 million people live with the condition worldwide. In addition, according to the WHO:
- Nearly 10 million new cases of dementia are identified each year.
- Dementia is the seventh leading cause of death among all diseases and one of the major causes of disability and dependency among older people globally.
- Dementia has physical, psychological, social and economic impacts, not only for people living with dementia, but also for their carers, families and society at large.
In the UK, Alzheimer’s Research UK has cited estimates that at least 850,000 people are living with the condition. More recent estimates commissioned by the Alzheimer’s Society suggest the number may be higher, with over 900,000 people now living with dementia. Furthermore, Alzheimer’s Research UK has noted:
- One in 14 people over the age of 65 and one in six people over the age of 80 are thought to have dementia.
- The risk of developing dementia doubles every five years after the age of 65.
- Dementia was the leading cause of death for women in 2019, and the second leading cause of death for men that year.
- There are over 200,000 new cases of dementia diagnosed each year.
- The total number of cases is expected to exceed 1 million by 2025; 1.6 million by 2040; and 2 million by 2050.
In addition, the Alzheimer’s Society has observed that over 40,000 of those with dementia in the UK are aged under 65. The charity has also noted that much of the costs of care and treatment for dementia are born by those living with the condition and family, and that care costs overall continue to rise:
- Two thirds of the cost of dementia is paid by people with the condition and their families.
- Unpaid carers supporting someone with dementia save the UK economy £13.9 billion a year.
- The total cost of care for people with dementia in the UK is £34.7 billion. This is set to rise sharply over the next two decades, to £94.1 billion by 2040.
- The cost of social care for people with dementia is set to nearly treble by 2040, increasing from £15.7billion to £45.4billion.
It is estimated that one in three people will care for a person with dementia in their lifetime. Half of them are employed and it’s thought that some 66,000 people have already cut their working hours to care for a family member, whilst 50,000 people have left work altogether.
The last Labour Government published the first national dementia strategy for England, entitled Living Well with Dementia, in 2009. The document was structured around three themes: raising awareness and understanding of dementia; early diagnosis and support; and living well with the condition.
In 2012, the Coalition Government followed up with the Prime Minister’s Challenge on Dementia, which sought to deliver major improvements in dementia care and research by 2015. This focused on three key areas:
- Driving improvements in health and care.
- Creating dementia friendly communities that understand how to help.
- Better research.
Three ‘champion groups’ were charged with bringing together organisations and groups with an interest in these areas, to “support the delivery of the commitments and to mobilise wider engagement”.
In 2015, the Coalition Government published a successor challenge entitled the Prime Minister’s Challenge on Dementia 2020. At the time, the Government said that “significant progress has been made in improving health and care for people with dementia and carers, creating dementia-friendly communities, and boosting dementia research”. Then Prime Minister David Cameron added that he wanted the new challenge to build on this progress and by 2020 for England to be:
- the best country in the world for dementia care and support and for people with dementia, their carers and families to live; and
- the best place in the world to undertake research into dementia and other neurodegenerative diseases.
To fund these ambitions, the Government committed to investing over £300 million into UK dementia research and medical innovation by March 2020. It subsequently reported this commitment had been met a year early, with £344 million having been spent on dementia research by March 2019.
The challenge 2020 document committed the Government to establishing an international dementia institute in England within five years. The UK Dementia Research Institute (UKDRI) was launched in 2017 to lead the UK’s dementia research efforts.
In 2016, the Conservative Government published an implementation plan for the 2020 challenge. This detailed how the 50 commitments contained in the earlier plans would be met. It set out priority actions across four themes: risk reduction; health and care; awareness and social action; and research.
Most recently, in February 2019 the Government published a progress review. This summarised the views of stakeholders on the progress of the challenge so far and what was envisaged for the remainder of the challenge period. The Government noted that, “overall, respondents felt that we are on track” to meet the commitments set out in the 2020 challenge.
Recent government commitments
We also want to save millions of people, and their families, from suffering the agony of a slow decline due to dementia. We will make finding a cure one of our Government’s biggest collective priorities—one of the ‘grand challenges’ that will define our future along with the impact of climate change or artificial intelligence. This will include doubling research funding into dementia and speeding up trials for new treatments.
Referred to as the ‘dementia moonshot’, the Alzheimer’s Society has argued that in practice this “should mean an extra £800 million over ten years for dementia research”. As the UKDRI has observed, this would take total research funding to £1.6 billion over the next decade.
There is currently no planned date for publication of a strategy to deliver the dementia moonshot. However, the Government is strongly committed to supporting research into dementia. As part of our 2020 Challenge on Dementia, the Government has spent £344 million on dementia research in the past five years and we are currently working on ways to significantly boost further research on dementia at all stages on the translation pathway including medical and care interventions. Later this year, we plan to bring forward proposals for a new strategy to set out our plans for dementia care, support, awareness and research in England.
All Party Parliamentary Group report
The All Party Parliamentary Group (APPG) on Dementia, which is co-chaired by Baroness Greengross and operates in partnership with the Alzheimer’s Society, contends that the Government has yet to deliver on its funding pledges. The central recommendation of its Fuelling the Moonshot report, published on 8 September 2021 after an inquiry held over the summer, was for the Government to “deliver on its manifesto commitment and fund the dementia moonshot as soon as possible, working with stakeholders to establish a timetable for this funding to be brought forward”. The report argued that moonshot funding would be “crucial to the Government’s aims to level up the UK and make it a science superpower”. It added that fulfilling the funding commitment would help retain the “best and brightest researchers, including early career researchers”.
The report made seven further recommendations alongside the central funding call to the Government. These were:
- For moonshot funding to be directed towards development of novel methods for early diagnosis.
- For appropriate funding for the UKDRI to be confirmed for the next 10 years.
- For the Alzheimer’s Society’s centres of excellence model to be expanded by introducing three new centres focusing on issues such as translation and the implementation of research.
- For the Government to establish a specific fund of £40 million to support both clinical and preclinical postdoctoral research positions and talent retention in dementia research.
- For the Government to develop a longitude prize for dementia, which would support the development of novel technologies.
- For the Government to work with Join Dementia Research (JDR) and NHS authorities to maximise the success of JDR by moving the programme to an opt out model and addressing data gaps by integrating JDR with electronic patient records.
- For the Office for Health Promotion to launching public information campaigns to explain how the public can take steps to reduce their dementia risk, and to generally increase people’s understanding of dementia.
Developments since the APPG report
On 7 September 2021, Prime Minister Boris Johnson was asked in the House of Commons whether the Government would fulfil the commitment in the Conservative manifesto for a dementia research moonshot. He replied: “I can certainly confirm that the moonshot programme that was begun by my right hon. Friend the former Secretary of State for Health—one of his many moonshots—continues”.
On 18 October 2021, Maria Caulfield, a Parliamentary Under Secretary of State at the Department of Health and Social Care, said the Government would “announce our strategy for dementia research in due course”. She added that plans for delivering a dementia moonshot would be subject to settlements in the forthcoming spending review.
The Autumn Budget and Spending Review published on 27 October 2021 did not include reference to the dementia moonshot funding pledge. Reacting to the Government’s spending plans, director of the UKDRI Professor Bart de Strooper said the omission was a setback to those working to deliver cures for dementia:
The absence of the dementia moonshot today was a major blow to UK neuroscientists racing to find cures for these devastating diseases—not to mention the 885,000 people living with dementia in the UK, their families, friends and carers.
Alzheimer’s Research UK was also critical of the moonshot commitment not having been addressed in the spending review. Hilary Evans, chief executive at Alzheimer’s Research UK, said it represented a missed opportunity:
The Chancellor today missed an opportunity to deliver on [the Government’s] 2019 manifesto promise to double dementia research funding. As the UK’s leading dementia research charity, we feel this lets down the nearly one million people in the UK affected by this devastating condition. More than 50,000 of our campaigners have been loud and clear with the Government about how much this increased funding matters to people with dementia.
- UK Dementia Research Institute, ‘“Fuelling the Moonshot”: MPs call for ten years of UK DRI funding’, 8 September 2021
- Alzheimer’s Society, ‘Maximising the UK dementia research moonshot for people affected by dementia’, 23 March 2021
- House of Commons Library, Dementia: Policy, Services and Statistics, 14 May 2021; and Dementia Action Week, 25 May 2021
Cover image by Pattern on freepik.