Alzheimer’s & Continuing Healthcare funding

We regularly speak with families battling to receive continuing healthcare funding for relatives in the advanced stages of Alzheimer’s disease. So why doesn’t having Alzheimer’s automatically qualify you for NHS Continuing Healthcare funding?

NHS Continuing Healthcare is a package of care arranged and funded by the NHS.  To be eligible for Continuing Healthcare funding, it must be established that your need for care is primarily health related. Additionally, these needs must be assessed as being either complex, intense and unpredictable in their nature or a combination of the same. An individual’s health needs, not their diagnosis determines whether they are eligible for funding so being diagnosed with Alzheimer’s, or in fact any other condition is not in itself an automatic entitlement to free care.

Whilst a diagnosis of Alzheimer’s disease will not automatically mean that someone is entitled to NHS continuing healthcare the complex health needs of a person with advanced Alzheimer’s means they are more likely to meet the criteria.

Alzheimer’s disease is a physical illness which damages a person’s brain. This eventually causes dementia, affecting memory and thinking. Alzheimer’s disease is the most common cause of dementia.

Around 60% of people diagnosed with dementia, will have Alzheimer’s disease which is the most common in the over 65 age group. Alzheimer’s disease affects memory (particularly in relation to time with patients becoming unable to recall recent events), cognitive ability (poor organisational skills and an inability to perform familiar, everyday tasks), insight (patient’s decision making can become affected resulting in poor judgements being made), language (difficulty naming objects and misusing words may be noticed) and spatial awareness (difficulty performing everyday tasks like dressing).

1 in 3 people born in the UK today will go on to develop dementia in their lifetime. Alzheimer’s is a progressive disease. This means that over time, more parts of the brain are damaged. As this happens, further symptoms will develop and become more severe.

Due to the progressive nature of the disease, the symptoms of Alzheimer’s are generally mild to start with, but get worse over time and eventually they will start to interfere with the ability to carry out everyday tasks. The earliest symptoms are usually memory lapses, especially having trouble recalling recent events or learning new information.

As Alzheimer’s progresses, problems with communication, reasoning and orientation become more apparent meaning that the individual will need more day-to-day support from those who care for them. Patients can develop unusual behaviours that seem out of character, including aggression, disturbed sleep patterns, agitation, calling out or repeating the same question.

Eventually the person will become very frail and may have difficulties eating or walking without help; these symptoms mean that the individual will need help with all their daily activities.

According to the Alzheimer’s Society, individuals with dementia experience particular difficulties meeting the criteria of the Decision Support Tool (the document used to record evidence of an individual’s care needs to determine if they qualify for continuing healthcare funding).

“The health and social care system discriminates against people with dementia. Despite dementia being a medical condition, the needs of people with dementia are often seen as social care rather than healthcare needs. As a result, thousands of people with dementia spend substantial amounts of money on social care they need as a result of their medical condition.

Second, the design of the NHS continuing care system is not appropriate for people with dementia. The application and appeals process are difficult for people with dementia to navigate and, in many cases, assessments are conducted by health and social care professionals using generic guidance documents, without consulting professionals with experience of dementia. Alzheimer’s Society calls for independent, experienced support and advocacy to help people with dementia navigate the application process and assessments to include a health or social care professional with experience of dementia.”

Further information:

The Alzheimer’s Society is a useful source for the latest dementia advice and resources to support individuals with Alzheimer’s and their families.