Quality social care

1 in 3 of those born today will develop dementia in their lifetime, so it is vital dementia care is accessible to all.  

What is the current state of the care system for dementia?

Data from the Office for National Statistics (ONS) states that dementia is now the UK’s biggest killer, however, with no current cure, it is crucial the social care system is set up properly to deliver care that meets the needs of people living with dementia.  

But currently social care systems across England, Wales and Northern Ireland are not meeting those needs.  

There is a lack of personalised care that meets the specialist needs associated with dementia, insufficient support for unpaid carers, and the financial burden of care falls too heavily on individuals.  

With the number of people living with dementia who draw on the social care system only set to grow, the time to stabilise and improve the system ready for the future is now. 

What are we calling for?

1. All care staff should be required to undertake high quality dementia training, and each nation should implement a long-term social care workforce strategy so that we have enough of the right people with the right skills to provide high quality care.

   Research by a cross-party group of MPs in 2022 found that less than half of people living with dementia rated care staff’s understanding of dementia positively. The current workforce faces significant and persistent challenges, with a vacancy rate of 9.9% in England and high turnover rates. Just 45% of care staff in England have received any kind of dementia training. 

2. Improved support for unpaid carers through assessments and appropriate breaks.

   Unpaid carers often lack the recognition and support they deserve. We are calling for local systems to offer annual statutory needs assessments and ensure they can access dementia-specific respite care more proactively. Sufficient funding for both must be provided by national governments.

3. A sustainable funding model for quality personalised care which shares the cost of care more evenly across society. 

   A sustainable funding model would ensure that quality, personalised care is accessible to everyone living with dementia. Currently, individuals face care costs averaging £100,000 over their lifetimes, leaving many unable to access the level of care they require.

Why is prioritising social care for dementia so important?

Developments in disease modifying treatments (DMTs) provide hope for the future, but we must also focus on providing help and support in the present. Many people living with dementia will continue to be reliant on the social care system to help manage their symptoms, with the majority of people unable to access the diagnostic testing required to access DMTs, and many not having a form of dementia that is currently eligible for these treatments.  

It is therefore vitally important that the care system is future-proofed and fit for purpose, offering greater access to high-quality, affordable, personalised care that meets the specialist needs associated with dementia.

When organised well, and when care staff have the right skills, care 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.

People with dementia make up around 60% of people drawing on care at home in the UK.

Our over-stretched and under-supported workforce can too often only focus on the essential tasks of basic personal care which are necessary for a safe and healthy life. But basic personal care alone will not give people a good quality of life.  

People living with dementia deserve personalised care, delivered by staff with understanding of dementia, which supports choice and control and maintenance of their relationships. This level of care can only be provided by staff that are trained in dementia, are fairly paid and have access to career progression.

A survey of Alzheimer’s Society campaigners asking people to identify their priorities for social care reform in England, Wales, and Northern Ireland saw:

• 8/10 of respondents in England prioritise an introduction of a cap on care costs.
• Over half of those in Wales identify training and support for the social care workforce as a priority.
• The majority of respondents in Northern Ireland called for more support for unpaid carers. 

What have our dementia campaigners been involved in?

• The recently announced Care Workforce Pathway for Adult Social Care referenced the importance of dementia training for people working in dementia settings. We welcomed this as an important step forward but there is further to go.
• The adult social care sector workforce strategy, published by Skills for Care in July 2024, contained a recommendation that all care staff should undertake dementia training. This is a significant step forward, and we are now calling for this recommendation to be implemented.  
• Surveys on social care to gather information on what people hold as priorities for Government, shaping our campaigning and policy focus. These took place across England, Wales, and Northern Ireland.  
• Called on the Chancellor to use the Spring Budget to commit to funding a 10-year social care People Plan.
• Over 135,000 supporters called on the Government to #CuretheCareSystem.
• A joint event between the APPG on Dementia and APPG Adult Social Care, focussing on social care workforce reform, highlighting messages from the Workforce Matters report.