Third with dementia never receive a formal diagnosis so won’t receive new ‘miracle’ drugs

At least a third of dementia patients would not benefit from breakthrough drugs as they are never officially diagnosed with the disease, a report warns.

NHS figures show just 64 per cent of people in England with dementia have a formal diagnosis, lagging behind the government’s target of 67 per cent.

The lack of diagnosis means thousands of people would never be in contention for drugs like lecanemab and donanemab, hailed as ‘momentous’ in the fight to treat the disease.

Alzheimer’s Research UK said proven diagnosis techniques, such as lumbar punctures, were scarcely used with just 2 per cent of people suspected of having the disease given one.

Limited availability of diagnostic tests and the reluctance of some doctors to even offer people a diagnosis at all, has resulted in a postcode lottery, Alzheimer’s Research UK has warned

Its Tipping Point: The Future of Dementia report is calling for numbers to be increased from 2,000 to 20,000 per year.

This would need an investment of £16m to fund the diagnostic infrastructure, equipment, and workforce training, including 50 new band 6/7 nurses across the UK.

This should be followed by sustained annual investment of £10m until new diagnostic tools, like blood tests, are ready to replace lumbar punctures, it states.

Samantha Benham-Hermetz, of Alzheimer’s Research UK, said: ‘For people living with dementia to receive proper treatment – including the new drugs currently being looked at by regulators – they need to receive a formal diagnosis.

‘But in England, we know that more than a third of over-65s living with dementia never get a diagnosis at all. This is completely unacceptable, as is the underlying diagnosis target of 67 per cent.

‘We wouldn’t accept this for any other condition, so we shouldn’t for dementia. In other UK nations, this information isn’t even available, as data on dementia diagnosis rates aren’t routinely published.’

It warned limited availability of diagnostic tests and the reluctance of some doctors to even offer people a diagnosis at all, has resulted in a postcode lottery.

Just 53 per cent of people living with dementia in Herefordshire and Worcestershire will be diagnosed, compared to 73 per cent in South Yorkshire, it found.

It comes as a second report predicts there will be a further 1.5 million cases of dementia in the UK by 2050.

Alzheimer’s Disease International (ADI) said more than 636,000 of these cases would be preventable of people and governments took more action.

The charity said cutting down on alcohol consumption, stopping smoking, doing more exercise and keeping frequent social contact could all lower a person’s risk of Alzheimer’s.

Dementia remains the biggest killer in the UK and is on track to be the nation’s most expensive health condition by 2030.

If nothing changes, one in two people will be directly affected by the disease, either caring for someone with the condition, developing it themselves, or both.

Officials need to take more action to address known risk factors, such as obesity, air pollution and restricted access to early education, it said.

Paola Barbarino, chief executive of ADI, said: ‘This is a critical step, in the absence of treatment or a cure, to prevent as many cases as possible.

‘We must ensure populations are aware of dementia risk-reduction strategies, at all ages, and have access to necessary information, advice, and support services.’

What is Alzheimer’s and how is it treated?

Alzheimer’s disease is a progressive, degenerative disease of the brain, in which build-up of abnormal proteins causes nerve cells to die.

This disrupts the transmitters that carry messages, and causes the brain to shrink.

More than 5 million people suffer from the disease in the US, where it is the 6th leading cause of death, and more than 1 million Britons have it.

WHAT HAPPENS?

As brain cells die, the functions they provide are lost.

That includes memory, orientation and the ability to think and reason.

The progress of the disease is slow and gradual.

On average, patients live five to seven years after diagnosis, but some may live for ten to 15 years.

EARLY SYMPTOMS:

Loss of short-term memory
Disorientation
Behavioral changes
Mood swings
Difficulties dealing with money or making a phone call

LATER SYMPTOMS:

Severe memory loss, forgetting close family members, familiar objects or places
Becoming anxious and frustrated over inability to make sense of the world, leading to aggressive behavior
Eventually lose ability to walk
May have problems eating
The majority will eventually need 24-hour care

HOW IT IS TREATED?

There is no known cure for Alzheimer’s disease.

However, some treatments are available that help alleviate some of the symptoms.

One of these is Acetylcholinesterase inhibitors which helps brain cells communicate to one another.

Another is menantine which works by blocking a chemical called glutamate that can build-up in the brains of people with Alzheimer’s disease inhibiting mental function.

As the disease progresses Alzheimer’s patients can start displaying aggressive behaviour and/or may suffer from depression. Drugs can be provided to help mitigate these symptoms.

Other non-pharmaceutical treatments like mental training to improve memory helping combat the one aspect of Alzheimer’s disease is also recommended.

Source: Alzheimer’s Association and the NHS