Fix the funding: make care fairer for people with dementia

Together, we can help more people with dementia get the care they need.

NHS continuing healthcare (CHC) funding can be a lifeline for people with dementia in England. It can help cover care home fees, care at home and other essential support.

But too many families are wasting precious time they should be spending together navigating an unworkable system, as the NHS CHC assessment process doesn’t properly recognise the realities of living with dementia.

As a result, people who may be entitled to support are missing out.

Three ways to fix the funding

We’re calling on the Government to urgently review the NHS continuing healthcare process so that it meets the needs of people with dementia. Here are three ways NHS England can make the system better:

1. Raise awareness of NHS continuing healthcare funding
2. Recognise the needs of people with dementia during the assessment
3. Offer support to families throughout the process

Read the summary report

Read the full report

Mahersh’s story

Mahersh shares the challenges he and wife Nishma faced when they attempted to secure NHS CHC funding for his mum’s care.

What is NHS continuing healthcare funding?

To get CHC, people must apply and have their needs assessed.

Dementia is a complex and progressive condition that affects everyone differently. That’s why specialist dementia expertise is essential throughout the assessment process to ensure a person’s needs are properly understood and considered.

However, this doesn’t routinely happen. Too often, the unique needs of people living with dementia are misunderstood, underestimated or assessed incorrectly. As a result, many families struggle to get the care and support they’re entitled to.

We want the Health Secretary to review the CHC process so that it better recognises the cognitive, behavioural and care needs of people living with dementia.

Find out more about what CHC is, whether you might be eligible and how to apply.

How is the current CHC process affecting people?

Families describe feeling frustrated and demoralised by a system that appears to work against them. Instead of spending precious time together, many find themselves trying to navigate a process that can feel confusing, stressful and unfair.

Influencing national reform

We’re making sure the voices of families affected by dementia are heard by those shaping future care reform.

With the support of Dementia UK campaigners, we’ve been engaging directly with the Casey Commission, an independent group tasked by the UK Government with reviewing England’s adult social care system.

Dementia UK has hosted two roundtables bringing together people with lived experience of dementia, Admiral Nurses and representatives from the Commission, providing an opportunity to highlight why the current CHC process isn’t fit for purpose and what change we want to see.

After hearing from people affected by dementia, the Commission has recognised dementia as a priority issue. Baroness Louise Casey, the Chair of the Commission, has also highlighted concerns around access to CHC.

How Dementia UK Admiral Nurses can support you

Our Admiral Nurses can support families to understand and navigate the CHC process, providing information, advocacy and guidance through our Helpline and virtual clinic appointments. They cannot, however, complete CHC application or assessment forms on behalf of families.

To speak to an Admiral Nurse, please call the Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December) or email helpline@dementiauk.org. You can also book an appointment with an Admiral Nurse in our virtual clinics.

* The research was carried out by Ipsos UK. Ipsos UK interviewed a representative quota sample of 3,275 adults aged 16-75 in England, Wales and Scotland using its online i:omnibus between 25th – 29th Aug 2023. The sample obtained is representative of the population with quotas on Age, Gender, Region and Working Status. The data has been weighted to the known offline population proportions for age, working status and social grade within gender, and region to reflect the adult population of England, Wales and Scotland.

In addition, sub-samples referred to as follows:

1. All adults aged 16-75 in England/Wales/Scotland (n=3275)
2. All adults aged 16-75 in England/Wales/Scotland who know/knew someone with a dementia diagnosis (n=1772)