What needs to improve for social care to better support people with dementia?

There are around 900,000 people in the UK living with dementia. By 2040, there could be up to 1.7 million people living with dementia in England and Wales. There are promising new treatments which fight against its effects, but many people with dementia will still need care and support services to help them manage their daily lives. 

Social care can play a crucial role in supporting people with dementia to live independent and fulfilling lives for as long as possible. But recent governments have not taken enough action to make sure everyone with dementia can be supported well over the coming years. 

This report looks at social care for people living with dementia in England. It sets out the current challenges with providing good social care for people with dementia. It also makes recommendations about what needs to happen to improve social care for people with dementia. 

Why is good social care important for people living with dementia?

Social care helps people who need care and support to lead independent and fulfilling lives for as long as possible. It includes help with:

• personal care (such as personal hygiene)
• help with daily living
• attending social activities, for instance at community day centres.

People can access social care in their own homes, care homes or other places people live, as well as in their local communities.

Many people living with dementia use social care services. For example, 70% of people who live in a care home have dementia. Councils are responsible for organising social care services in their area.

What are the challenges in providing good social care for people living with dementia?

Not everyone receives high quality dementia care at the moment. Some local areas do better than others at ensuring good social care is available for people living with dementia.

People of all ages, backgrounds and experiences can develop dementia. It's important that care services can be flexible around people’s needs and preferences. We heard that there aren’t enough services that can do this. Care that doesn’t take account of a person’s life story could be distressing for them, and even worsen their dementia.

Social care services are not well set up for people living with dementia

Many people living with dementia want to live at home, but this can be difficult if their homes are not suitable, or social care services are not available. Many services in the community, such as day centres or dementia cafes, have shut down because they are too expensive to run without financial support from councils.

People with complex or advanced dementia often require specific support from their social care services, such as one-to-one care. Many people with complex dementia need to move into care homes so they can be safely looked after. 

However, many care homes are not set up in the best way to provide complex dementia care. For example, older care home buildings that might have long corridors and many small rooms can be confusing to a person with dementia.

Health and care services often don’t work well together for people living with dementia, which can impact their wellbeing. For example, many people with dementia end up in hospital unexpectedly, and stay in hospital for a long time. This can worsen their condition.

Staff and unpaid carers do not get enough support to help them care for people living with dementia

There are not enough people who work in social care, for example as care workers or nurses. Having the right staff with the right skills is fundamental to great care. Staff are not always able to access training on how to support people living with dementia. It is important that staff who work with people living with dementia understand a person’s life story and preferences.

Many people who have dementia rely on care and support from family and friends, who are known as unpaid carers. Caring for a relative or friend can be hard work, but many unpaid carers are not able to access help from their local council. Many unpaid carers struggle to look after their own health properly.

There is not enough government action on dementia

The government does not currently set out what good dementia care can look like. It does not set specific standards for care providers. There is no clear national plan to improve social care or dementia care in the coming years.

What needs to happen to improve dementia care?

• Councils should develop the right types of services that can suit the needs of all people with dementia and their carers.
• Integrated care systems (the organisations that organise health and some care services in local areas) should plan better to make sure that all the services someone might need during their dementia journey work well together.
• National organisations (the government, the NHS, and those that create regulations for health and care) should:
  • Look at places which are providing great dementia care and use these examples to make sure everyone who provides care knows what good care looks like.
  • Develop a national workforce strategy that includes how to make sure all social care staff have good quality training on how to provide good care and support to people with dementia.
  • Provide more funding for unpaid carers that can make sure that they can access better information, training and support.
  • Collect more information on people in England living with dementia to better understand how to plan services to make sure that people are getting the services they need.

Get more detail in the full report