This is a House of Commons Special Report.
Date Published: 9 February 2022
The Committee published its Seventh Report of Session 2021–22, Supporting people with dementia and their carers (HC 96), on 29 October 2021. The Government response was received on 1 February 2022 and is appended below.
We conclude, in line with our report on Social care: funding and workforce, the current social care system is “unfair and confusing”. Those living with dementia remain unprotected from unlimited costs and navigating the system is burdensome for those providing support. This is unacceptable and it is therefore essential the Government’s White Paper addresses these issues with full reform of the social care system. (Paragraph 19)
We agree that the current system needs to change. Currently, individuals face the risk of unpredictable and unlimited social care costs; one in seven individuals over 65 will face care costs above £100,000 and roughly one in ten individuals will face care costs above £120,000 over their lifetime. Most people are unable to protect themselves against these risks as affordable financial products are unavailable. Under the current means test the state only begins to help people pay for their care once they have less than £23,250 of chargeable assets, although chargeable assets do not include the value of their home if they, or an eligible family member, lives there - this is known as the “housing disregard”.
In order to protect people from unlimited costs, the reforms the Government announced on 07 September 2021 will include:
Everybody will be better off under the new system, whether because they benefit financially, or because they benefit from the peace of mind that a cap on costs brings. When the reforms are implemented, the Government estimates that an extra 90,000 older care users at any moment in time will receive state support. In 2020–21, the Government already supported 360,000 older adults and 256,000 younger adults. Of those 90,000 older adults we estimate that 30,000 will be benefitting from the changes to the means test alone, and 60,000 will benefitting from the cap or the combinations of the cap and the means test.
Additionally, on 01 December 2021, the Government published the social care reform white paper, People at the Heart of Care, which addresses the challenges that people experience when navigating the adult social care system, including those with dementia, setting out policies that are designed to improve information and advice.
A lack of accessible, personalised advice has been highlighted by stakeholders as an important gap in the current system. The white paper sets out how the Government will bring together those with expertise in providing information and advice services and those who draw on care and support to work together to create new solutions to providing personalised advice. The Government will be providing dedicated funding of at least £5 million to pilot new approaches and gather better evidence of what works. The Government will also trial new approaches to personalised advice, learning from pilots by convening an expert panel to provide guidance and advice.
Personalised advice will provide the guidance a person or their friends and family need to understand which aspects of the adult social system are relevant to them, so they can decide which services they would like to draw on that will enable them to live the life they want to live.
On those living with dementia, the Government is currently working with stakeholders and will be producing a standalone dementia strategy this year. The Government’s priority is for the strategy to be credible and shaped by a range of experts, including people living with dementia, and their carers.
We are disappointed that the Government has not provided greater funding for social care in the next three years from the new health and social care levy, with no clarity about what proportion of the levy will go to social care after that period. However, the Government has pledged to look at the wider issue of social care funding at the upcoming spending review and it is essential that the starting point for the social care funding increase must be an additional £7 billion per year by 2023–24 to cover demographic changes, uplift staff pay in line with the National Minimum Wage and to protect people who face catastrophic social care costs. (Paragraph 20)
The Government has announced a range of funding for social care over the next three years, both to address core pressures facing the sector, and to kickstart an ambitious programme of reform.
To support adult social care reform, the Government is investing £5.4 billion over the next three years. This includes over £1.7 billion to begin major improvements across the social care system in England, and £3.6 billion to reform the social care charging system, of which £1.4 billion will be available to enable all local authorities to move towards paying providers a fair cost of care.
In addition to the £5.4 billion over three years for reform, the Government set out in the provisional local government finance settlement (LGFS) a range of spending to ensure local authorities can respond effectively to core pressures facing the sector, such as rising demographic and unit cost pressures.
The provisional LGFS proposes making available an additional £3.5 billion to councils over 2022/23. Including adult social care reform funding, local authority funding for 2022/23 will increase by over 4% in real terms. This will ensure councils across the country have the resources they need to deliver key services. As part of this settlement, local authorities can make use of over £1 billion of additional resource specifically for social care in 2022/23. This includes the increase in Social Care Grant and the improved Better Care Fund, an additional one per cent adult social care precept, and deferred flexibilities from last year’s settlement.
We have heard of the importance of receiving a timely diagnosis for people with dementia and their carers. We appreciate that the covid-19 pandemic will undoubtably have played a part in the recent decline in diagnosis rates which was previously on target. We also welcome the funding NHS England and Improvement has committed to bring the diagnosis rate back to the target of two thirds of those estimated to have dementia. (Paragraph 29)
The Challenge on Dementia 2020 target is for two thirds of people living with dementia to receive a formal diagnosis. The target had been met consistently at the national level from July 2016 until end of March 2020. Since April 2020, the Dementia Diagnosis Rate (DDR) has dropped below the national ambition for the first time in almost 4 years and reflects the impact that the current pandemic has had on memory assessment services and GP referrals into those services.
At the onset of the first lockdown, memory assessment services were suspended and GP referrals to these services decreased significantly. This was due to the prioritisation of other services, as well as the impact the pandemic had on GP services and the instruction for older people to shield and remain at home. However, in recent months, memory assessment services have reopened and resumed assessments. They have adapted their service delivery to offer a personalised approach to patients so that assessments and diagnoses can continue. This includes providing a choice of modalities such as telephone, video conference or face to face appointments where appropriate and this is being promoted and supported nationally.
The Government welcome the committee’s comments on the £17 million of funding allocated to NHS England and Improvement in 2021–22. NHS England and Improvement has set out its priorities with respect to dementia in a regional delivery plan for 2021–22 sent to NHS England and Improvement regional teams. This includes ensuring that the £17 million made available by the Government is directed to:
The £17 million was disbursed to Clinical Commissioning Groups (CCGs) in June 2021. Examples of local plans and activity include:
In addition, to enhance support for health professionals further when undertaking memory assessments where there is a possibility of dementia diagnosis, NHS England and Improvement have recently commissioned:
Both the learning package and the evaluation resource will be shared widely with stakeholders, including general practice, working via the British Medical Association (BMA), and memory assessment services once complete. It is anticipated that this will be published in Winter 2021.
The vaccination response demanded in light of the latest wave of the COVID-19 variant has caused significant disruption of GP services, the full impact of which is yet to be seen on the numbers of people referred to memory services and dementia diagnoses.
However, it is anticipated that the disruption is very likely to impede the recovery process for the DDR and post diagnostic support, particularly when combined with other compounding factors arising including:
However, the evidence we have taken has made it clear that improving diagnosis alone is not sufficient: people living with dementia and their carers need appropriate post diagnostic support throughout the rest of their life. We are clear that there should be no gap between receiving a diagnosis and providing both immediate support and planning longer-term care for someone with dementia. People with dementia and their carers should not be left to fall through the cracks of an uncoordinated and complex pathway across the health and social care system. (Paragraph 30)
The Government agrees with the committee that although accurate and timely diagnosis is an important enabler in accessing the appropriate post-diagnostic support, that there are other factors that can influence a person’s experience of living with dementia. The Government wants a society where every person with dementia and their families and carers, receive high quality, compassionate care, from diagnosis through to end of life.
NHS England and Improvement are committed to delivering high-quality care and support for every person with dementia, and central to this is the provision of personalised care. Critically, personalised care takes a whole-system approach, integrating services around the person including health, social care, public health, and wider services. This is summarised in the and .
In addition, the NHS Long Term Plan commitments include:
All the additional roles have access to the dementia friends online training through the NHS Future Collaborative space.
NHS Urgent Community Response Teams
Work to help keep older people, including those with dementia, well at home is also being taken forward by local health service and council teams who began the roll out of Urgent Community Response teams from April 2020, as part of the NHS Long Term Plan to support England’s ageing population and those with complex needs, including dementia. The teams will give those who need it fast access to a range of qualified professionals who can address both health and social care needs, including physiotherapy and occupational therapy, medication prescribing and reviews, and help with staying well-fed and hydrated. Backed by £14 million of investment, seven ‘accelerator’ sites announced on 23 January 2020 were the first to deliver the new standards for care, working together to standardise how urgent community services will be measured, and delivered consistently across the country, 365 days a year.
Older people and adults with complex health needs, including dementia, who have a very urgent care need, including a risk of being hospitalised, will be able to access a response from a team of skilled professionals within two hours. A two-day standard will also apply for teams to put in place tailored packages of intermediate care, or reablement services, for individuals in their own homes, with the aim of restoring independence and confidence after a hospital stay. The urgent response standards are part of a range of commitments – including enhanced NHS support to care homes – which local health and care leaders will be rolling out over the next few years to help keep older people well at home.
The Government is committed to the delivery of world-leading health and social care across the whole of the UK. The Government’s aim is to join up care around a person’s needs so that, from their perspective, their experience of care is seamless. The Government wants to improve the quality and experience of care for individual patients, service users and carers, as well as outcomes for local populations, ensuring that everyone receives the right care, in the right place, at the right time.
On 07 September 2021, the Government announced that it would set out plans on health and care integration, aligning with the white paper on social care reform. The Government has already gone a long way to better integrate health and care within and across systems with the Health and Care Bill, and the Government plans to publish a white paper on integration in 2022. This will build on and complement the Health and Care Bill, but the Government wants to go further and faster, working closely with the system to deliver person-centred care. It will set out how the government can go further on its ambitions to integrate at local level to help achieve the ambition for seamless working between health and care. The white paper will focus on making a reality of integration in local areas. This will be based on the learning of those who make integration happen on the ground because making decisions locally is very often central to success.
Our proposals aim to clarify responsibility for the delivery of health and social care and set out priority outcomes to align our collective purpose and proposals. It will also strengthen factors such as leadership, oversight, data and technology and workforce to help us all to truly integrate health and care.
New Dementia Strategy
In addition, the Government is now working with stakeholders and will be setting out its plans on dementia for England for future years this year where it will be looking at how to improve the lived experience of dementia. The Government’s priority is for the strategy to be credible and shaped by a range of experts, including people living with dementia and their carers.
We recommend the Department of Health and Social Care and NHS England and Improvement use the White Paper to develop clear guidance on the care and support those living with dementia and their carers should expect to receive from diagnosis through to lifelong post-diagnostic support. This guidance must encourage integrated working across the health and social care system while also establishing clear responsibilities for Integrated Care Systems in coordinating care. Alongside this, there must be appropriate data collection along the whole dementia pathway to monitor activity and support improvement. We expect an update on this work by the end of November 2021. (Paragraph 31)
The Government wrote to the Committee in response to this recommendation on 01 December 2021 and has nothing further to add at this time. The Government will be producing a standalone dementia strategy this year.
As emphasised by Alzheimer’s Society and other key stakeholders, social care reform must be “rooted in the recognition of what good quality care looks like” and create a system where people with dementia are able to receive personalised care. We support this and believe that an essential foundation to this is a sustainable skilled and valued workforce. Reforms to deliver this must be a core part of the forthcoming White Paper including a focused effort to reducing the 30% turnover rates typical in the sector with a more strategic approach to social care pay, progression and conditions. We expect the Government’s recent commitment of £500 million to be spent on the social care workforce is unlikely to address these issues. (Paragraph 43)
The 1.5 million people who make up the paid social care workforce provide an invaluable service to the nation, especially throughout the COVID-19 pandemic. They work tirelessly to support those in our society who need care, and as this pandemic has made clear, the nation is indebted to their selfless dedication.
The adult social care workforce strategy, as introduced in the white paper, sets out the Government’s vision and the underpinning policies for an adult social care workforce where people can experience a rewarding career, where they are recognised for the vital work they do and feel their wellbeing is prioritised, with opportunities to develop and progress now and in the future.
The Government’s workforce strategy includes three key aims for the next three years, backed up by an investment of at least £500 million. The Government wants to build:
This £500 million is a major investment in the training and development of social care staff. The Government will work with sector leaders and partners to co-develop the training offer so that it can address skills gaps and meets the needs of the workforce and the people who use services. The number and type of training places will be developed as part of that work. The Government wants this investment to support as many social care workers who want to access and would benefit from training to be able to do so.
The policies also include a new career pathways map, a new national knowledge and skills framework to support training and development, policies to support care staff health and wellbeing, a new digital platform for social care staff, and initiatives for social workers, nurses and other allied health professionals. Through these policies, the Government wants staff to be empowered to deliver the highest quality of care, through greater staff retention and progression within the sector. The policies were informed by evidence and honed with stakeholders to enable system reform through the workforce.
The number of jobs in adult social care is forecast to grow by almost one third by 2035. As the population grows, and the way care is delivered evolves and diversifies, the adult social care workforce will need to grow and develop with it. The Government recognises that adult social care employers can struggle to recruit and retain the right number of staff. The Government will continue to work closely with local authorities and care providers to monitor workforce pressures, including on whether further action may be required. The Government is also taking action to support adult social care providers to recruit domestically, for example through the National Recruitment Campaign across broadcast, digital, and social media, highlighting the vital work care workers do, and by working with the Department for Work and Pensions to promote adult social care careers to jobseekers.
This workforce strategy set out in the white paper is just the beginning. The Government will need to work closely with adult social care leaders and staff as well as people who draw on care and support to implement it and take these policies forward now, and in the future.
With many people preferring to stay living at home if diagnosed with dementia, it is vital that any future Government strategies for dementia support this becoming a reality. Initiatives such as Dementia Friends and dementia-friendly communities have successfully increased awareness of dementia but more needs to be done for those living with dementia to be included in their local communities. (Paragraph 54)
The Government agrees that supporting people living with dementia to live the life they choose and feel included in the community is important, and that Dementia Friends and dementia-friendly communities have played an important part in increasing awareness of dementia amongst communities.
Through Dementia Friends, the Government is increasing public awareness and understanding of dementia, and through the dementia-friendly communities programme it is making society more inclusive, with communities and organisations committing to support people to live well with dementia. As a success of the 2020 Challenge on Dementia, there are now over 3.4 million Dementia Friends and 500 areas in England and Wales committed to being dementia-friendly communities, and the Alzheimer’s Society continues to look at ways of increasing the number of Dementia Friends within the community. The Government will be exploring the continued importance of raising awareness of dementia as part of the development of its new dementia strategy.
In addition to this, the Government is committed to sustainable improvement of the adult social care system and has brought forward a white paper for reform. As part of a sustainable adult social care system that enables people to live independently in their own homes and maintain good health for longer, the Government will work to ensure people have greater choice and control over where and how they live, receiving care and support in their own home to meet their individual needs. New models of care, including housing-with-care, have a vital role in delivering more personalised care, promoting prevention, and enabling people to live independently, with the necessary care and support available.
To support this, the Government has announced a new £300 million investment in housing. It is a significant new investment that will put better housing at the heart of the adult social care system. It will support local areas to provide more supported and specialised housing, enabling more people to live independently for longer.
Alongside this, the Government will invest up to £30 million in a new ‘Innovative Models of Care’ programme which will address the key barriers to embedding and ‘mainstreaming’ innovation in the sector. This will be done through partnership working, risk-sharing funding, and the provision of business support to providers. The Programme will provide the vehicle for local areas to come together to trial and embed ambitious new services for addressing key priorities which will be agreed with the sector.
Ensuring inclusivity for those living with dementia goes beyond the health and social care system. We heard that, for example, achieving inclusivity requires changes to housing and transport. Therefore, we recommended that the Government’s new dementia strategy must include cross-departmental initiatives to ensure people with dementia are able to remain connected to their community. (Paragraph 55)
The Government agrees that ensuring the inclusivity of dementia goes beyond the remits of the health and social care system and recognises the need for a cross-Government approach to achieving this. The Department of Health and Social Care (DHSC) is continuing to engage with other government departments as part of the development of the new dementia strategy.
The Government also recognises that a high-quality, safe, and suitable home can help people with dementia stay independent and healthy for longer and reduce health and social care costs. In England, the Government funds the Disabled Facilities Grant (DFG) to support eligible people, including older and disabled people, to adapt their homes to make them safe and suitable for their individual needs, subject to a means test, eligibility criteria and a needs assessment. £573 million has been provided for the DFG in 2021–22. In England, the Government also provide funding to build specialised housing - through the Care and Support Specialised Housing (CASSH) Fund - for older people and adults with learning and physical disabilities, and mental ill health.
In the adult social care reform white paper, the Government announced that it will commit a further £573 million per year to the DFG, between 2022–23 and 2024–25. The Government is also taking steps to ensure that the DFG can benefit more people in need and will consult on some of them in 2022. In addition to the announcement to continue the CASSH Fund at £71 million per year, the Government has introduced the new investment in housing, with at least £300 million funding over three years. Together they will drive increased confidence in the social supported housing market, stimulating a positive cycle of further innovation and private investment.
In addition, the Department for Transport (DfT) is working to improve access to transport through the Inclusive Transport Strategy. A key part of this is recognising that not all disabilities – including dementia – are visible. DfT is working with operators to design and deliver services in an inclusive way, ensuring information is accessible and assistance schemes are available. The media campaign, ‘It’s everyone’s journey’ (IEJ), aims to support the ambition of equal access on public transport by creating a more supportive and considerate environment. During the COVID-19 pandemic, the IEJ ‘World of difference’ campaign sought to raise awareness of the heightened needs of disabled people using public transport and provide reassurance by sharing the actions of operators to keep people safe.
As part of the development of the new dementia strategy, DHSC will be working with colleagues across government to identify relevant cross-government initiatives aimed at improving the lives of people living with dementia, and their carers.
Unpaid carers play a vital role in supporting people with dementia. We would like to acknowledge their tremendous contribution, especially over the pandemic period and we welcome the eventual inclusion of provisions in the Health and Care Bill relating to carers. The Government must consider unpaid carers in their White Paper for social care reform. To ensure reforms enable unpaid carers to better support those living with dementia, the Government must provide unpaid carers with the opportunity to contribute to any plans for reform. Carers deserve our support as well as our thanks. The Government must bring forward a National Carers’ Strategy by the end of March 2022 with the aim of offering improved support for people providing care and should improve the Carers register. (Paragraph 56)
The Government is committed to continuing to support carers to provide care as they would wish, and to do so in a way that supports their own health, wellbeing, and life choices, such as education and employment.
The Health and Care Bill provides an opportunity to create a health and care system that is more accountable and responsive to the people that use it. As part of this, the Government is committed to ensuring that the voices of carers – as well as those who access care and support – are properly embedded in Integrated Care Systems. The Health and Care Bill places two duties on Integrated Care Boards to support unpaid carers:
NHS England will look to publish guidance for planning purposes and for Integrated Care Boards, following the successful progress of the Health and Care Bill to an Act. This will help to ensure the Government can effectively implement the measures provided in the Bill.
In addition, in its white paper on social care reform, the Government set out a new strategic approach to empower unpaid carers to live happy, healthy, and fulfilling lives, building on the foundations of the Carers Action Plan.
This approach centred around three core strands:
As part of this, the Government announced that it is investing up to £25 million to work with the sector to stimulate a change in the services provided to support unpaid carers. The Government expects that this fund will identify and test a range of new and existing interventions that support and work best for those with different caring circumstances. For young carers, the Department for Education announced that they will amend the school census, at the earliest opportunity, to include young carers. This change has the potential to raise the visibility of young carers in the school system, provide a wealth of demographic evidence on the young carer population and shine a light on their educational achievement – allowing the Government to understand the impact of caring, including hard evidence on attendance and absenteeism, as well as headline information on educational progress and attainment.
Improving the ability to identify and hear from carers is crucial for recognising and supporting unpaid carers and improving policy making. However, data relating to unpaid carers can be difficult to collect and use. As the white paper sets out, the Government will look to increase the voluntary use of unpaid carer markers in NHS electronic health records by simplifying current approaches to data collection and registration. Additionally, the move away from aggregate data collections on carers towards client-level data, which will take place over the next three years, will also improve the Government’s understanding of unpaid carers.
Additionally, the Government response to the consultation on carers’ leave, published in September 2021, confirmed the Government’s intention to deliver on the manifesto commitment to introduce a new entitlement to one week of leave for unpaid carers. This will be a day-one right, available to all employees who are providing care for a dependent with a long-term care need. Eligible employees will be entitled to five days of unpaid leave per year, which will be available to take flexibly in individual or half days.