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 their lives the way 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 55.9% prioritising the availability of a wider range of care and support services. Furthermore, 54.9% prioritised services to better support and recognize unpaid carers. 

Dementia costs the UK around £34.7bn a year. This includes £1.9bn for Wales, £860m for Northern Ireland and £31.2bn for England. Of this figure, over £16.9bn is spent on social care: £830m for Wales, £360m for Northern Ireland and £14.5bn for England.

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 and catastrophic individual care costs, we need to move towards a new way of approaching care for future generations: a system that funds social care on the same basis as the NHS by sharing the risk. 

England 

The UK government set out plans to move towards a more risk sharing approach through the proposed cap on care costs, which aimed to place a lifetime cap of £86,000 on personal care costs. However, we are discouraged that the cap has now been delayed until 2025.

As well as helping to pool the cost of care, implementation would have also helped end the unfairness of self-funders having to pay more for the same level of care as is the case under the current system.

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. 

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 recently published briefing on the 2023/24 financial situation in Northern Ireland and proposed methods to bridge the shortfall of £300m are extremely concerning.

The proposal for reductions in nursing and residential care placements and the restriction and potential charging for domiciliary care packages rows back on the principles of sharing the risks of catastrophic costs and will have a significant and disproportionate impact on people living with dementia, many of whom rely on these services.   

The change 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.  

We need to see multi-year funding settlements for social care to give commissioners, providers and service users more certainty and enable innovation.  

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 stabilise systems so that everyone living with dementia who draws on social care is not faced with catastrophic 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, and staff are not paid well enough and have limited advancement options.

Importantly many staff are not equipped with the right knowledge and training to effectively support people with dementia and do their jobs to the best of their ability.

We need to see the care workforce prioritised across all nations with equal value and parity of funding with the NHS for resourcing, training and qualifications. 

At present, our over-stretched and under-supported workforce often has to focus on essential tasks of personal care - feeding, washing and dressing, which are necessary for someone to stay safe and healthy on a day-to-day basis.

Yet personal care alone will not necessarily give people a good quality of life. It doesn’t reflect the personalised care that supports people to live well, with choice and control, and maintain their relationships.

The change we need to see: A social care workforce strategy in each nation that delivers what everyone living with dementia wants from care - a trained workforce with knowledge and understanding of dementia.  

Family carers are not properly recognised as an important part of the social care system, and are not adequately supported with their role or maintaining their own wellbeing.

There are around 700,000 primary carers in the UK, with around 1.8m people providing some form of care and support for people with dementia in England. There are approximately 310,755 unpaid carers in Wales, representing an increase of 16.7% since 2001.There are over 290,000 people providing some form of unpaid care for a sick or disabled family member or friend.

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 and be supported to take breaks and manage their own wellbeing through dementia-specific respite care. 

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 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 All-Party Parliamentary Group on Dementia in its Workforce Matters report.  

 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. 

Calling for better recognition and support for unpaid carers, with ringfenced investment to increase access to dementia-specific breaks and support for carers with training and their own wellbeing.

We need more funding for carers assessments supplied to local authorities and trusts, focused on addressing the potential local need for assessments.

Local systems, including Councils and Trusts, 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 dementia.  

Working with Governments and experts to develop minimum standards of care which those living with dementia have a right to and can expect to draw on.

For example, the standards outlined in the All- Wales Dementia Care Pathway of Standards published in March 2021 as part of the Dementia Care Programme.