What we think about social care

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.

England 

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. 

Wales 

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. 

Northern Ireland  

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.

The social care workforce has been poorly supported for years across England, Wales, and Northern Ireland. There are too few staff, turnover is too high, staff are insufficiently paid and have limited advancement options. We need to see the care workforce prioritised across all nations with equal value and parity of funding with the NHS for resourcing, planning, training, and qualifications.

At present, many care staff lack the knowledge, skills, and time to effectively support someone living with dementia. Currently, the over-stretched workforce is often unable to focus on what matters to people – it can be too transactional, driven by time and task rather than connection, purpose, or genuine outcomes. While receiving personal care, such as washing and dressing, is essential to keep someone safe on a day-to-day basis, personal care alone will not necessarily equate to a good quality of life, which everyone has a right to.

An inquiry carried out for the All-Party Parliamentary Group (APPG) on Dementia in 2022, identified that people affected by dementia want a workforce with knowledge and understanding of their specialist needs, who provide care that sees the whole person and focuses on what really matters to them.

Furthermore, people affected by dementia want a workforce with the time to understand individual needs, and with the training and resources to deliver personalised care. Alongside this, they want consistency of staffing that allows a rich, supportive, and trusting relationship to develop. The APPG inquiry found that less than half (44%) of people living with dementia rated care staff’s understanding of dementia positively, and two in five (29%) people said their care was not personalised. This highlights the need to improve workforce training to better support people living with dementia specifically.

England 

The current social care system remains inhibited by continual workforce challenges, underpinned by 152,000 vacant posts (vacancy rate of 9.9%). If the adult social care workforce grows proportionally to the projected number of people aged 65 and over, then the number of social care jobs will need to increase by 25% (440,000 extra posts) by 2035. Low pay impacts retention - 390,000 people left their job in social care in 2022/23, one third of whom left social care altogether. 

In January 2024, the first phase of the Care Workforce Pathway was published, along with further details of the new Level 2 Care Certificate. Overall, this is a very positive development in England, and sees the Government taking steps to improve dementia training for staff caring for people with dementia, and career progression for care staff to support recruitment and retention. However, greater investment will be needed to support successful implementation of the Pathway and delivery of the appropriate level of dementia training to all staff providing dementia care.

Additionally, in the 2023 Autumn Statement, the Chancellor announced that from April 2024 the National Living Wage (NLW) is to increase from £10.42 per hour to £11.44 per hour. A survey conducted by the County Councils Network (CCN) found that the rise to the NLW will cost county authorities an average £6.3m each in 2024-2025. An increase to the NLW is a positive step in the right direction for the workforce but, without also addressing social care funding, it has wider implications. In lieu of additional sustained investment from the Government, providers of services will continue to face challenges with meeting rising workforce related costs, placing them at further financial risk. This affects people living with dementia as it may affect the care on which they draw.

Wales 

The social care workforce in Wales is under-resourced, with approximately 5,323 vacancies recorded (equivalent to a vacancy rate of 9% in total) from a total number of 84,134 people estimated to work in the social care sector. The social care workforce report being undervalued, with a lack of progression and training opportunities which highlight the need to tackle staff shortages by developing parity of esteem with the NHS.

The December 2023 Implementation Plan, sets out how the Welsh Government will take forward the ambition for a National Care and Support Service (NCS) as outlined in the Expert Group’s 2022 report. We support the Expert Group’s recommendations that work should move at pace to agree national standards for the appropriate pay, terms, and conditions for all social care workers in Wales. Action to be taken in Stage 1 of the Implementation Plan also includes a Progression Framework, however, there are currently no specific details of when this will be developed. 

Northern Ireland 

In Northern Ireland, there are challenges with the recruitment and retention of social care staff. As of September 2023, the social services staff group had the second highest proportion of vacancies within the health and care sector, with 1,493 vacancies. Workforce challenges include inequity between sectors, limited career development opportunities and low pay. 

In 2022, The Northern Ireland Social Care Council (NISCC) were tasked by the Department for Health (DoH) to develop a continuous professional learning framework, career development pathway and qualification-based register for social care workers. This is part of wider work around the development and transformation of the social care workforce in Northern Ireland. The NISCC have now published its Strategic plan for 2023-2027, which is focused on supporting safety, quality and improvement in social work and social care.

The change we need to see: 

• 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. Alzheimer’s Society are calling for workforce planning to include dementia across all three nations. We need fairer pay for social care workers, properly monitored, and more closely aligned to NHS pay scales. 
• We need rigorous evidence-based training, including a mandatory level of dementia training for all care staff directly supporting people living with dementia to Tier 2 of the Dementia Training Standards Framework.

England 

We’re calling for a 10-year social care People Plan with more investment in training and career development to help attract and retain staff. This call has been reiterated by the APPG on Dementia in its Workforce Matters report. We will continue to closely monitor implementation of the guidance, alongside subsequent developments following publication of the initial phase of the Care Workforce Pathway. We will continue to identify opportunities to engage with the DHSC on this to progress our policy calls, ensuring it works for people living with dementia.

Wales

We continue to call for appropriate funding and resources for social care workers within a culture of fairness, equality and partnership working informed by co-production in-line with the ambitions of the joint HEIW and Social Care Wales Health and Social Care Strategy 2022-2025 to develop a workforce with the capacity to meet the needs of the population by 2030. We are calling for any future social care system to be co-produced by those living with dementia and to appropriately value the social care workforce to enhance workforce recruitment and the provision of person-centered care, including through greater investment in renumeration, training, qualifications, and career pathways.

Northern Ireland 

We’re calling for improved people planning through the regional dementia care pathway. We need to attract new people into the sector, retain them, support them, pay them well and develop and train them properly. We agree that improvements need to reach the lowest paid within the sector and we also feel that the Department needs to be promoting social care as a career choice to encourage more people into the sector.

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.