What we think about social care
Learn about our position on the current social care system and our calls for action on funding, workforce strategy and support for unpaid carers.
What we think
The current social care system is not set up properly to deliver care that meets the needs of people living with dementia. Decades of underfunding and neglect by successive governments has resulted in care that is costly, difficult to access, and too often not personalised to meet people’s needs. Too often unpaid carers lack the support they need.
There is hope for the future for dementia with disease-modifying treatments in development, but we must also focus on help for today and for those who will not be eligible for such drugs. Many people living with dementia will continue to be reliant on the social care system to help manage their symptoms. They will continue to require accessible, high-quality, affordable, personalised care. It is therefore vitally important that the current and future care system is fit for purpose.
This is why we need to see clear action on:
- A sustainable funding model for quality personalised care which pools the risk of care costs.
- A long-term social care workforce strategy in each nation that delivers a sustainable and supported workforce
with the knowledge and understanding of dementia to provide high quality, personalised dementia care.
- Improved support for unpaid carers through assessments and appropriate breaks.
Social care is fundamental to people living with dementia and provides practical support to help people with activities they need to do every day. With no current cure for dementia, quality social care is a lifeline to people with dementia and their families - with many people drawing on care to manage their symptoms. When organised well, it can support people to live in the places they call home, doing what matters to them, with an ecosystem of support and relationships that they can draw on to live how they choose, with meaning, purpose, and connection.
People with dementia make up around 60% of people drawing on care at home in the UK and 70% of residents of older age residential care in England. There is projected to be a shortfall of 50,000 care home beds for people with dementia in England by 2030.
A recent survey of 3,278 Alzheimer’s Society campaigners asking people to identify their priorities for social care reform in England saw 82% of respondents prioritise introducing a cap on care costs, 74% prioritising action to ensure the workforce has the right training and qualifications to offer high-quality, personalised care, and 56% prioritising the availability of a wider range of care and support services. Furthermore, 55% prioritised services to better support and recognise unpaid carers.
The annual cost of care for people with dementia in the UK is £36.7bn a year. Of this, over £16.9bn is spent on social care, with £14.5bn spent in England, £830m in Wales and £360m in Northern Ireland. With one in three people born today predicted to develop dementia, it is impossible to tell who will in future require care and support.
People living with dementia often face catastrophic care costs - an individual with dementia spends an average of around £100,000 on their care over their lifetime. With a growing and ageing population, we need to move towards a new way of approaching care for future generations, underpinned by a system that pools the risk of care costs by sharing the risk.
Alzheimer’s Society welcomed the 2021 White Paper, ‘People at the Heart of Care’ including for its plans to move towards a more risk sharing approach through the proposed cap on personal care costs. We are discouraged that the cap has been delayed until 2025. Furthermore, we have seen delays to the raising of capital limits - the current means test has not been meaningfully uprated by the Government since 2010/11. According to the Institute for Government, both the lower and upper capital limits are now approximately 25% lower than they would be if they had risen in line with inflation since 2009/10. Consequently, the means test has become less generous over time, making it harder for individuals to access care.
Watering down and delaying reforms, such as scaling back the Fair Cost of Care Initiative (stagnant at £162m in 2023/2024 and 2024/2025), is further exacerbating the cost challenges people living with dementia face. Full implementation of the Fair Cost of Care Initiative, alongside implementation of the cap, would go some way to address the catastrophic care costs faced by people living with dementia.
The Fair Cost of Care Initiative would also help end the unfairness of self-funders paying more for the same level of care, as it is estimated that on average self-funders pay 41% more for residential care than fees paid by local authorities in the same care homes. A fair cost of care paid to providers to meet the high cost of delivering complex care for people living with dementia could also help reduce the risk of people drawing on care needing to top-up their fees to cover their care costs, as a result of a shortfall in funding.
We also need to see a movement away from short-terminist thinking, which inhibits planning, innovation, and improvement. Instead, we need to see multi-year funding settlements, ring-fenced, if necessary, for social care to give commissioners, providers, and service users more certainty and to enable innovation. This should be underpinned by forward planning on how to most impactfully utilise investment to drive forward tangible change, influenced through co-production with people living with dementia.
Imperatively, the opportunity for reform and the vision set out in the White Paper must not be lost, as there was much to be celebrated therein. We would welcome full implementation of the proposed charging reforms to pool costs and share risks, alongside certainty from the Government on how this will be delivered in practice. Delivery needs to be overseen by a programme board to effectively manage its progress, hold overall accountability, and ensure the meeting of objectives.
We have seen a rising rate of older people in need of support, real-terms cuts to local government finances, and increasing wages which have led to a widening gap in social care funding which is why we need clear action to both stabilise, and tangibly improve, systems so that everyone living with dementia who draws on social care is not faced with catastrophic care costs. Alzheimer's Society supports the Levelling Up, Housing and Communities Committee's call for the Government to invest £7bn a year in social care by 2023-24 to close the funding gap. This increase will cover demographic changes, uplift staff pay in line with the National Minimum Wage and protect people who face catastrophic social care costs.
We welcomed the Welsh Government’s commitment to working towards a National Care and Support Service free at the point of need as a priority in its Policy Co-Operation Agreement with Plaid Cymru, in addition to the announcement of a further £30 million to build community care capacity, strengthen local care services and increase access to domiciliary care.
The published briefing on the 2023/2024 financial situation in Northern Ireland and proposed methods to bridge the shortfall of £300m were concerning. We were pleased to see that the proposal for reductions in nursing and residential care placements, and the restriction and potential charging for domiciliary care packages, were not confirmed and we continue to monitor future Budgets for any developments.
The changes we need to see:
- High quality and easily accessible social care across all three nations, backed up by long-term sustainable investment across the sector. We need a funding model that can facilitate this and is centered on achieving affordable care for everyone living with dementia. We need a fair cost of care which reflects the higher cost of delivering dementia care.
- Alzheimer’s Society will continue holding Governments to account on the commitments they have made on improving social care and shaping the next steps of Government social care reform, while calling for long-term, sustainable investment which pools the risk of care costs.
Unpaid carers of people living with dementia play a vital role in the lives of people living with dementia yet receive insufficient recognition within the social care system and are not adequately supported with their role or maintaining their own wellbeing. There are approximately 1.8m people providing some form of care and support for people with dementia in England. In Wales, there are approximately 310,000 unpaid carers. There are over 290,000 people providing some form of unpaid care for a sick or disabled family member or friend in Northern Ireland.
Unpaid carers provide a huge amount of care to people with dementia. They are estimated to provide care to a value of £12.2bn in England, £770m in Wales and £360m in Northern Ireland. In total, unpaid carers of people with dementia provide care to a value of £14.6bn a year across the UK, which is projected to increase to £35.7bn by 2040.
The change we need to see:
- Better recognition for unpaid carers across all nations, with all carers able to access a proper annual assessment of their needs (as per statutory duties) and be supported to take breaks and manage their own wellbeing through dementia-specific respite care.
- Furthermore, local systems must proactively offer assessments to people when they are identified as carers, rather than wait for a request, and ensure assessments of carers of people living with dementia are provided at least annually due to the progressive nature of the condition. We need more funding for carers assessments supplied to local authorities and trusts, focused on addressing the potential local need for assessments.
- We are also calling for ringfenced investment to increase access to dementia-specific breaks and support for carers with training and to support their own wellbeing.
Support for carers
Learn more about how a carer for a person with dementia can get a care assessment.
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