Diagnosis rates for dementia are "completely unacceptable" and the Government must take action to meet its own targets, a leading charity said.
The call from Alzheimer's Research UK came as it urged all political parties to "harness the outputs of dementia research" and revolutionise diagnosis and treatment of the condition.
One in three people living with dementia in England "never receive a formal diagnosis", the charity alerted. Latest NHS figures for July 2023 showed that the dementia diagnosis rate among people aged 65 years and over was 63.8% of the total number estimated to be affected – up just 0.3% from the previous month's figure of 63.5%, and only marginally higher than the diagnosis rate of 62.6% recorded for July last year.
The charity noted that these figures were "lagging behind the Government's target of 67%", leaving too many people "potentially unable to access life-changing treatments".
Samantha Benham-Hermetz, executive director of policy and communications at Alzheimer's Research UK, emphasised that for people living with dementia, to receive "proper" treatment — including new drugs currently being looked at by regulators — "they need to receive a formal diagnosis".
One in Two Directly Affected by Dementia in Lifetime
Dementia remained the biggest killer in the UK and was on track to be the nation's most expensive health condition by 2030, warned the charity in its new report, Tipping Point: The Future of Dementia.
In England, more than a third of over-65s living with dementia "never get a diagnosis at all", underlined Ms Benham-Hermetz, which she complained was "completely unacceptable", as was the Government's diagnosis target of 67%. "We wouldn't accept this for any other condition, so we shouldn't for dementia," she expressed.
In addition, Ms Benham-Hermetz pointed out that in other UK nations, this information "isn't even available", as data on dementia diagnosis rates were not routinely published.
The charity highlighted that almost a million people were living with dementia in the UK today, and that one in two of the UK population would be directly affected in their lifetime – either by caring for someone with the condition, developing it themselves, or both.
Commitment to Tangible Actions
Alzheimer's Research UK highlighted that lumbar punctures were recommended in NHS clinical guidelines for diagnosing dementia but estimated that only 2% of people were currently offered them. It called for a ten-fold boost in the number of people who received lumbar puncture tests on the NHS, from 2000 to 20,000 per year. To achieve this, investment should be made in diagnostic infrastructure, equipment, and workforce training, it stressed, and should be followed by sustained annual investment until new diagnostic tools, like blood tests, were ready to replace lumbar punctures.
The charity also highlighted that research was opening up "incredible opportunities" in dementia diagnosis and care. The potential arrival of two new Alzheimer's disease treatments, lecanemab and donanemab, made improving diagnosis rates a more urgent priority, and failure to do so would risk many people in the UK being unable to benefit from the recent "momentous" research breakthroughs.
The UK still had a "long way to go" before the NHS could widely and equitably offer early stage, accurate diagnoses as standard. The charity pointed out that "limited" availability of diagnostic tests, and the "reluctance" of some doctors to offer people a diagnosis at all, had resulted in an "unacceptable postcode lottery". For example, 53% of people living with dementia in Herefordshire and Worcestershire would be diagnosed, compared with 73% in South Yorkshire.
The charity's recommendations aimed to transform the way dementia was prevented and treated, and "ultimately find a cure".
"We're calling on all parties to ensure dementia does not remain a death sentence for those it touches," Ms Benham-Hermetz said.
Other recommendations in the report included:
- Creating 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
- Instructing the National Institute for Health and Care Excellence (NICE) to consider the cost of informal care and carers' quality of life, when assessing the cost-effectiveness of new dementia treatments for the NHS
- Increasing clinical research participation across the UK
Backing the recommendations, Divya Chadha Manek, a trustee of Alzheimer's Research UK, emphasised that "making discoveries alone is not enough". Discoveries needed to be turned into diagnostics, treatments, and prevention measures, that could "stop dementia in its tracks", she said.
Prioritising action on dementia afforded a "significant opportunity" to improve societal wellbeing and lifelong health, reduce the burden on the NHS, and build a legacy where people with dementia "no longer have to suffer", she explained.
"It's time for decision-makers to listen and take action," she demanded.