Politicians must commit to investing more in better diagnosing dementia in a bid to give people access to up-and-coming drugs and ensure the disease “does not remain a death sentence” for those impacted, a charity has said.

Alzheimer’s Research UK said a third of over-65s living with dementia in England never get a formal diagnosis, which could prevent them accessing groundbreaking treatments if they are approved by regulators.

Its report – Tipping Point: The Future of Dementia – says lumbar punctures are an “effective tool” for diagnosing the disease but they are only offered to 2% of people on the NHS.

Alzheimer’s Research UK is urging politicians to pledge to increase the number of people being given lumbar punctures to diagnose dementia from 2,000 to 20,000 per year.

It is calling for an initial investment of £16 million in equipment and staff training, followed by £10 million annually until new diagnostic tools for the disease, such as blood tests, are developed.

Samantha Benham-Hermetz, executive director of policy and communications at 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%.

“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.”

About 850,000 people are estimated to have dementia in the UK, the NHS says.

The report comes after trials of the drug donanemab were found to slow the “clinical decline” of Alzheimer’s by up to 35%.

The results were hailed as a “turning point in the fight against” the disease.

Another drug, lecanemab, was found to reduce memory decline among patients with early-stage Alzheimer’s.

In July, NHS England chief executive Amanda Pritchard told BBC’s Sunday With Laura Kuenssberg show she had set up a team to plan how to roll-out promising new drugs even as they wait to be approved by regulators.

However, Alzheimer’s Research UK said people in the UK may not benefit from the new treatments if the NHS cannot “widely and equitably offer early stage, accurate diagnoses as standard”.

The charity has made a number of other recommendations to politicians across all parties ahead of the next general election.

These are:

– The development of a cross-party strategy to address health and lifestyle factors that increase the risk of a person developing dementia;
– A call to instruct the National Institute for Health and Care Excellence to consider the cost of informal care and carers’ quality of life when assessing the cost-effectiveness of making new drugs available on the NHS; and
– Increasing clinical research participation across the UK.

Ms Benham-Hermetz added: “We’re calling on all parties to ensure dementia does not remain a death sentence for those it touches.

“This isn’t about winning over voters with warm words. It’s about committing to tangible actions that will ensure we have a future where there is a cure for dementia, and where people can be free from the fear and heartbreak of this devastating condition.”

Queen’s Birthday Honours List 2021
Divya Chadha Manek was honoured with an OBE for services to Government during the Covid-19 Response in 2021 (PA)

Divya Chadha Manek, a trustee of Alzheimer’s Research UK, said: “As a member of the Covid Vaccines Taskforce, I’ve seen first-hand how clinical research in the UK delivered life-changing discoveries to the rest of the world. I know we can do this for dementia.

“But making discoveries alone is not enough. Discoveries need to be turned into diagnostics, treatments and prevention measures that can stop dementia in its tracks.

“By prioritising action on dementia, there is a significant opportunity for policy makers to improve societal wellbeing and lifelong health, reducing the burden on our NHS and most importantly, building a legacy where people with dementia no longer have to suffer. It’s time for decision-makers to listen and take action.”

A Department of Health and Social Care spokesperson said: “We recognise that early diagnosis of dementia is vital, which is why we’re committed to improving diagnosis rates and access to new treatments.

“We are doubling the funding for dementia research to £160 million a year by 2024/25 to accelerate the development of the latest treatments and technology. Our Major Conditions Strategy will also set out the standards patients should expect at all stages of dementia care.

“But the most effective way to support early diagnosis is to deliver on our priority to cut the waiting lists – we have opened 114 community diagnostic centres across the country which have delivered over four million additional tests, checks and scans since July 2021.”