Dementia charity calls for manifesto pledges to tackle 'completely unacceptable’ diagnosis rates

Ahead of the next general election campaign, Alzheimer’s Research UK has set out a series of calls for party leaders to tackle the increasing pressure that dementia places on society, the NHS, and the economy.

The recommendations, issued in a report – Tipping Point: The Future of Dementia – come as new NHS figures show just 64% of people in England with dementia have a formal diagnosis, lagging behind the government's target of 67%. 

The potential arrival of two new Alzheimer’s treatments, lecanemab and donanemab, means this needs to change quickly, or people in the UK may not benefit from the recent research breakthroughs that have been hailed as “momentous”. But the UK still has a long way to go before the NHS can widely and equitably offer early stage, accurate diagnoses as standard, Alzheimer’s Research UK warns.

Lumbar punctures are an effective tool for diagnosing dementia. And although recommended in NHS clinical guidelines, it’s estimated that only 2% of people are currently offered such tests. The charity is calling on parties across the political spectrum to radically boost the number of people who receive lumbar puncture tests on the NHS from 2,000 to 20,000 per year. To achieve this, parties must commit to investing £16m in 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. 

Samantha Benham-Hermetz, Executive Director of Policy & 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.”

The charity says that limited availability of diagnostic tests, and the reluctance of some doctors to even offer people a diagnosis at all, has resulted in an unacceptable postcode lottery. Just 53% of people living with dementia in Herefordshire and Worcestershire will be diagnosed, compared to 73% in South Yorkshire.

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.”

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 it - either by caring for someone with the condition, developing it themselves, or both. 

Alzheimer’s Research UK says research is opening up incredible opportunities to change this outlook, but this can only happen if political parties commit to sustained, bold and ambitious action at the forthcoming general election. 

The charity’s recommendations, which have been developed alongside individuals from across the UK with lived experience of dementia, as well as clinicians and researchers, also aim to transform the way dementia is prevented and treated, and ultimately find a cure. Other recommendations include:

  1. Create a cross-governmental ‘Strategy for the Prevention of Ill Health’ to address the health and lifestyle factors that affect people’s risk of developing dementia. For example, exposure to air pollution, and unmanaged hearing loss.  
  2. Instruct the National Institute for Health and Care Excellence (NICE) to consider the cost of informal care and carer’s quality of life, when assessing the cost-effectiveness of new dementia treatments for the NHS. 
  3. Increase clinical research participation across the UK, particularly in areas that have traditionally had less dementia research activity and infrastructure in place. 

The recommendations are backed by Divya Chadha Manek, OBE, who was honoured in 2021 for playing an instrumental role on the Covid Vaccines Taskforce. 

Divya, who is 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.”

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