What we think about social care

Retaining the status quo is no longer an option. A significant proportion of those drawing on care have dementia – for example, we know that around 70% of residents of older age residential care have dementia.

Additionally, UK dementia prevalence is predicted to increase from 982,000 people today to 1.4 million by 2040 (and associated economic costs of £42 billion today rising to £90 billion by 2040). An additional 76,000 people with dementia are projected to be living in a residential home and 30,000 in a nursing home in 2040 compared to today.  

Social care will therefore be key to ensuring society can rise to the challenge posed by dementia. This challenge is significant but not insurmountable. Governments can and must make progress through listening to people living with dementia and those who care for them, and implementing our recommendations on dementia training, workforce planning, support for unpaid carers and a fairer funding system. 

An inquiry carried out by a cross-party group of MPs 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. They want a workforce with the time to understand individual needs, and with the training and resources to deliver personalised care for people with dementia.

Currently the workforce is unable to deliver on these key areas. There are too few staff, turnover is too high, there is insufficient pay and staff have limited training and career progression opportunities. The overstretched workforce is often unable to focus on what matters to those they care for, meaning care can be too transactional, driven by ‘time and task’ rather than connection, purpose, or outcomes.

Of particular concern is the fact that too few care staff are trained in dementia: in England, only 29% of care staff undertake any kind of dementia training. In Northern Ireland and Wales we do not have national data on dementia training uptake. This has significant consequences: research suggests that staff lack the knowledge and skills to effectively support someone living with dementia.

A recent survey of 3,476 people who are close to someone with dementia or living with symptoms across England, Wales and Northern Ireland, suggests the situation has not improved since 2022. Less than four in 10 are satisfied with the support available for people living with dementia; and when asked what would best help to improve the lives of people living with dementia, 65% of people said more care workers who are skilled in caring for those with dementia.

The 2024 Care Quality Commission State of Care report highlighted dementia as a key area of concern, and specifically that health and care staff do not always understand the specific needs of people with dementia. A recent report by Nuffield Trust also found that people with dementia in England are not consistently receiving good quality social care.

The low levels of dementia training are particularly concerning because, as highlighted in our new report (Because we’re human too: Why dementia training for care workers matters, and how to deliver it), high quality dementia training for care staff delivers significant benefits.

The change we need to see:

National governments:  

Governments in England, Wales and Northern Ireland must introduce a statutory duty for all care providers registered with the relevant regulatory body in each nation to ensure their care staff undertake dementia training, with content mapped to the relevant national framework in each nation. This should be underpinned by sufficient funding, following the precedent in England of the Oliver McGowan Mandatory Training on learning disabilities and autism.

National governments should also implement a long-term social care workforce strategy to foster a sustainable and supported workforce to deliver high-quality, personalised care. Strategies should include fair pay and a clear career development pathway. Workforce strategies in each nation must recognise the challenge to social care posed by dementia.

Local government:  

When commissioning adult social care services, local authorities in England and Wales, and Health and Social Care Trusts in Northern Ireland, should include a contractual provision obliging care providers to ensure care staff undertake dementia training mapped to the relevant national framework in each nation.  

Local government and care providers:  

When sourcing and implementing training, local authorities in England and Wales, Health and Social Care Trusts in Northern Ireland, and care providers should factor in all five key components for impactful dementia training, set out in our report ‘Because we’re human too: Why dementia training for care workers matters and how to deliver it’. This is in addition to ensuring training content maps to the relevant national framework. 

• 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 representing an increase of 16.7% since 2001.
• There are over 290,000 people providing some form of unpaid care in Northern Ireland.

In total, the economic value of the care unpaid carers of people living with dementia provide, together with the opportunity cost of hours of work foregone, is £21.1billion in the UK.

Clearly, unpaid carers are fundamental to the social care system, yet their contributions often go unnoticed and unsupported. In our recent survey of people living with dementia and their carers across England, Wales and Northern Ireland, one in five carers had not heard of any sources of support, and half had not received any support (such as carer’s allowance). 

51% of carers said their mental or physical health had been negatively affected and 25% felt more socially isolated.  

With the challenges carers can face, dementia specific respite care (short-term residential care for people living with dementia) should enable carers to take breaks and manage their own wellbeing. Yet only 9% of those we had surveyed had been able to access dementia-specific respite breaks. 66% of people we asked said they wanted to see more support for unpaid carers of people living with dementia.

The change we need to see:

The UK and Northern Ireland governments must introduce a National Carers’ Strategy to ensure a cross-government approach to meeting the needs of unpaid carers of people living with dementia. 

Welsh government introduced a National Carers’ Strategy in 2021, which included priorities to: identify and value unpaid carers; provide information, advice and assistance; and to improve access to short breaks and respite care. Welsh government should evaluate progress against this strategy and take any necessary actions to ensure the progress against these priorities.  

Any National Carers’ Strategy introduced in England or Northern Ireland, and any refresh of the National Carers Strategy in Wales, must include a focus on ensuring unpaid carers: are receiving the statutory needs assessments to which they are entitled; and have sufficient access to dementia-specific respite care.

In the UK, the annual cost of social care for people living with dementia is over £17.2bn. These costs are projected to rise over the next two decades to £40.7bn by 2040.

Current funding models exacerbate pressures and delays in other parts of health and care systems. Insufficient capacity in adult social care continues to contribute to delays in discharging people from hospital, placing further pressures on the NHS.

Social care systems in England, Wales and Northern Ireland are under significant pressure, and the financial burden falls too heavily on individuals, who face care costs averaging around £100,000 over their lifetime, which is unacceptably high.  

Significant investment in social care is long overdue and would pay dividends, helping to ensure people with dementia receive the high quality care they deserve, boosting national and local economies, and relieving pressure on health services.

The change we need to see:

The UK, Wales and Northern Ireland governments must introduce long-term sustainable investment into social care, with a shift from short-term thinking to multi-year funding settlements. The certainty this will provide will enable long-term planning, improvement and innovation.

 In England, Alzheimer’s Society supported the Levelling Up, Housing and Communities Committee’s recommendation for the Government to invest a minimum £7bn a year in social care by 2023-2467 to close the funding gap. We are disappointed that the previous Government did not deliver the investment needed and continue to recommend that this funding be committed, in addition to the long-term thinking recommended above.  

Governments should also ensure that the funding model for social care pools the risk of care costs across society, easing financial burdens on individuals and their families. One example of risk-pooling is a cap on total care costs that someone pays in their lifetime and a generous means test (the lower the cap and the more generous the means test, the greater the risk pooling). We were disappointed that the UK Government decided in July 2024 not to proceed with the proposed charging reforms set out in People at the Heart of Care.