How do I get NHS funding for dementia?

It is possible to get NHS funding – called NHS Continuing Healthcare Funding – for those with dementia; however, it’s not available to all who are diagnosed, and the application process isn’t always easy.

If you or a loved one has been diagnosed with dementia, this guide will help you understand CHC funding for dementia.

• What is dementia?
• Do people living with dementia have to pay care home fees?
• Does dementia qualify for CHC funding?
• How Compass CHC can help.

Dementia is an ‘umbrella term’ used to describe a collection of progressive neurological disorders. Someone might be diagnosed with a single type of dementia or multiple forms.

The different types of dementia:

• Alzheimer’s disease – the most common form of dementia – affecting 1 in 14 people over 65 – and typically characterised by progressive memory loss and cognitive challenges.
• Vascular dementia – the second most common form of dementia – affecting around 180,000 people in the UK –  vascular dementia can cause stroke-like symptoms and movement issues.
• Frontotemporal dementia – with most cases diagnosed between 45 and 65, frontotemporal dementia can affect behaviour and personality, causing personality changes that are often considered negative.
• Dementia with Lewy Bodies – also known as DLB, this form of dementia can appear as Alzheimer’s does, but another major symptom includes visual and auditory hallucinations.
• Young onset dementia – when a person develops dementia before the age of 65. More likely to be hereditary. Mainly causes problems with language, vision or behaviour and less likely to experience memory loss as a first symptom.

Each type of dementia comes with its own nuances, challenges and symptoms. However, there are some more general symptoms that appear across the set:

• Communication issues: difficulty finding the right words or struggling to keep up with the conversation.
• Memory issues: short-term memory problems, forgetting what they’ve previously said or even important information.
• Confusion and disorientation: becoming disoriented in even familiar environments or becoming confused with information.
• Cognitive difficulties: struggling with planning and organisation tasks such as writing a shopping list or concentrating.
• Mood and personality changes: becoming more emotional, anxious, depressed, irritable, or not acting like their usual selves.

Due to the complex and progressive nature of the condition, each person’s experience with dementia and the symptoms they experience is unique.

Yes, people with dementia have to pay care home fees. This can either be self-funded (paid for out of your own pocket), with local authority support (you split the cost with a local authority), or with NHS Continuing Healthcare (fully funded by the NHS).

A person with dementia can require complex, long-term care, which can mean residential care is the best option for all involved. However, if self-funding, this can be costly.

This is why understanding if you qualify for NHS Continuing Healthcare is an important process. We have worked with many families in this position, who are unsure whether they would be eligible for NHS Continuing Healthcare funding or how to start the process of finding out.

Dementia is not an automatic qualification for NHS Continuing Healthcare.

To determine whether a person is eligible for care funding, they will need to undergo an NHS assessment, which will determine whether their condition means they have primary health needs, which are intense, complex and unpredictable in their nature.

Learn More: What is a Primary Health Need?

Unfortunately, the way a primary health need is defined can make it challenging for people with dementia to be successful in claiming funding. This is because the areas where a dementia patient might score highly as needing help – communication or psychological and emotional needs – are considered less severe domains.

We also know from first-hand experience with past clients that CHC funding can be removed when symptoms of dementia progress, and a person might not display the primary health needs that made them previously eligible.

Yes, we always encourage someone to reapply for funding if they have been refused before.

The progressive nature of dementia can mean that, over time, someone might start to “tick boxes” for criteria they once didn’t tick. New symptoms can appear as the disease progresses, or adjacent issues may present that need to be considered.

Applying for CHC funding can be complicated and overwhelming, leading to people who meet the criteria for funding being incorrectly denied it. Our purpose at Compass CHC is to help you secure funding and clear the confusion around the process.

The results of being incorrectly refused NHS Continuing Healthcare funding for dementia can be catastrophic. The cost of the complex package of care those with severe needs can exceed £2,000 a week, resulting in over £100,000 of care home fees annually, which need to be self-funded. We understand that for many, that figure is unachievable, and CHC funding is a lifeline.

If you would like guidance on how to get CHC funding for dementia, contact our team of experts today. We can provide free advice and answer any questions you have through our confidential, no-obligation assessment.