What we think about social care

The importance of social care to people with dementia

Providing high-quality social care for people living with dementia and their carers has never been more important.

Our vision is for people living with dementia to access high-quality, affordable social care that meets their specialist needs, delivered by a skilled and well-supported workforce.

We also want unpaid carers to receive the statutory support they're entitled to, including regular breaks through access to dementia-specific respite care.

Through investment and prioritisation in the right areas, we can improve the quality of life for hundreds of thousands of people and deliver better outcomes for both paid and unpaid carers.

Social care cannot continue as it is

We want to see:

1. A well-supported, well-trained social care workforce, trained in dementia.
2. More support for unpaid carers.
3. More investment and fairer funding.

Background on social care for people with dementia

Despite the scale and growth of need, social care systems are not consistently set up to meet the needs of people living with dementia and their families. 

Workforce capability, namely inadequate dementia training, is a key contributing factor. This is concerning as a large proportion of those needing care have dementia. For example, best available modelling suggests people living with dementia make up around 70% of care home residents aged 65+ in England.

The scale of care need

• Dementia prevalence in the UK is set to increase from 982,000 people today to 1.4 million by 2040.
• By 2040, an additional 106,000 people living with dementia are projected to be living in residential or nursing care, while demand for domiciliary care is also expected to rise by 43%. 
• In the UK, the annual cost of social care for people living with dementia is over £17.2bn. These costs are projected to rise to £40.7bn by 2040.

This challenge is significant, but not impossible

Although the challenge is significant, it is not insurmountable. Governments, commissioners, regulators and providers must work together, alongside people living with dementia, the workforce, and unpaid carers, to close the training gap and strengthen the foundations of high-quality care.

The changes we need to see in social care must come from:

Unpaid dementia carers

Across England, Wales and Northern Ireland, millions of families quietly sustain the dementia care system, yet their contributions often go unnoticed and unsupported. Despite their central role, too often unpaid carers remain under-recognised, under-supported, and too often invisible within the very systems that rely on them. 

Our recent survey shows that one in seven carers are unaware of any sources of support, and 46% do not know who to contact to access social care. Worryingly, one in five carers are unaware of any support available to them, and over half have received no help at all. 

Without action, social care systems will continue to depend on unpaid carers while failing to protect their wellbeing. The consequences will be felt not only by carers themselves, but by the people they support and the systems that rely on them. 

Supporting unpaid carers is essential to the future of dementia care and to the resilience of the wider health and care system.

The scale of care being provided by unpaid carers

• There are approximately 1.8 million people providing some form of care and support for people with dementia in England.  
• In Wales, there are approximately 310,000 unpaid carers, an increase of 16.7% since 2001.
• There are over 290,000 people providing some form of unpaid care in Northern Ireland. 

The change we need to see for dementia carers

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

Investment and funding

In the UK, the annual cost of social care for people living with dementia is over £17.2 billion. These costs are projected to rise over the next two decades to £40.7 billion by 2040. Social care systems in England, Wales and Northern Ireland are under huge pressure, and the financial burden often falls too heavily on individuals. Recent research found that social care costs, on average, £14,000 per year per patient – increasing to £73,000 per year for severe patients. 

Significant investment in social care is long overdue and would pay dividends. Investing in it now would help ensure people living with dementia receive the quality care they deserve, while also supporting local economies and reducing pressure on the NHS.

The change we need to see for investment and funding

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