The “completely unacceptable” dementia diagnosis rates in England must be tackled, with new figures revealing one in three people with the neurodegenerative condition never receive a formal diagnosis.
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 – call for parties across the political spectrum to commit to radically boosting the number of people who receive lumbar puncture tests on the NHS from 2,000 to 20,000 per year.
Achieving this would require a commitment to investing £16million in diagnostic infrastructure, equipment, and workforce training, including 50 new band 6/7 nurses across the UK. This would need to be followed by sustained annual investment of £10million until new diagnostic tools, like blood tests, are ready to replace lumbar punctures.
The report sets out how 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.
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:
- 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.
- 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.
- Increase clinical research participation across the UK, particularly in areas that have traditionally had less dementia research activity and infrastructure in place.
“For people living with dementia to receive proper treatment, they need to receive a formal diagnosis” said Samantha Benham-Hermetz, executive director of policy and communications at Alzheimer’s Research UK.
“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 government’s underlying diagnosis target of 67 per cent.
“We wouldn’t accept this for any other condition, so we shouldn’t for dementia.”
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 by experts as “momentous”.
But the NHS still struggles to widely and equitably offer early stage, accurate diagnoses as standard.
A diagnosis is usually given following a lumbar puncture procedure, but it is estimated that only two per cent of people are currently offered such tests.
The recommendations in the Tipping Point report are backed by Divya Chadha Manek, who was honoured in 2021 for playing an instrumental role on the Covid Vaccines Taskforce, and who is a trustee of Alzheimer’s Research UK.
“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,” she wrote in a foreword to the report.
“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.”
