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Hundreds of thousands of dementia sufferers still undiagnosed as targets missed for third year running

Dementia in England continues to go under diagnosed, the NHS says (Getty)
Dementia in England continues to go under diagnosed, the NHS says (Getty)

Hundreds of thousands of dementia sufferers are still going undiagnosed, experts have warned, as national targets have been missed for the third year in a row.

Dementia diagnosis rates across England remain slow to recover and well below the national target despite millions of pounds being invested in services. Charities have warned that thousands of families will continue to be stuck in limbo without adequate support unless the government makes dementia a key focus of its forthcoming plan to tackle major conditions.

Experts said it was “completely unacceptable” that more than 250,000 sufferers had not been diagnosed – a rate they claimed would not be tolerated for other conditions such as cancer.

Diagnosis rates plummeted during the Covid pandemic and have struggled to recover, although there has been a slight improvement in recent months.

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All but one region, the North West, failed to hit the national target of 66.7 per cent in the last year, new analysis by The Independent shows.

Data indicates only a marginal improvement on last year, when all regions fell short. Rates are calculated by comparing recorded diagnoses with the estimated prevalence of the disease. Scotland, Wales and Northern Ireland do not routinely publish the equivalent data.

As of September this year, there were 459,549 people aged 65 or above diagnosed with dementia in England. The NHS estimated that there were 714,751 living with the disease, giving a diagnosis rate of 64.3 per cent. This meant there were 255,202 people undiagnosed.

Dr Susan Mitchell, head of policy at Alzheimer’s Research UK, said the figures make it clear that getting an early and accurate dementia diagnosis remains extremely challenging.

“Even if this target were hit across England, a third of people with dementia wouldn’t get a formal diagnosis,” she told The Independent. “We wouldn’t accept this for any other condition, so we shouldn’t for dementia.”

The failure to hit the national target came despite an additional £17m of funding being released to clinical commissioning groups in June 2021 to improve the process of diagnosing dementia. A further £96m has been earmarked to help speed up the development of new treatments for dementia, as part of the Dame Barbara Windsor Dementia Mission announced last year.

Last year, hitting the national target of 66.7 per cent was included in NHS service priorities and operational planning guidance, as part of refined mental health objectives for 2023/24. The government also announced a standalone, 10-year plan for dementia, but this was scrapped and subsequently subsumed into the more general Major Conditions Strategy.

A call for evidence closed in May and responses were being analysed, with a full report due to follow.

A woman whose mother has dementia said the family were forced to go private to get a diagnosis after being told they would have to wait years on the NHS.

Melissa Williams with her mother Wendy, who was diagnosed with dementia after going private (Supplied)
Melissa Williams with her mother Wendy, who was diagnosed with dementia after going private (Supplied)

Melissa Williams said: “Initially [her mother Wendy] was told she had mild cognitive impairment (MCI) and that she wouldn’t be seen again for another five years. At this point, we knew things weren’t right and we knew that the symptoms weren’t just MCI.

“So, we sought private medical help. After some initial testing, including a PET scan, that is when she was diagnosed at the age of 59.

“We shouldn’t have had to fight so hard for a diagnosis. I hope that access to diagnosis, through something as accessible as a blood test, will be available for families in the near future so they don’t face the same difficulties we and many others experience.”

South West England continues to have the poorest outcomes of any NHS region, with diagnosis rates across the country revealing a postcode lottery for patients. The region had an average diagnosis rate of 59 per cent in the 12 months from October 2022 to September 2023, up from 57.3 per cent over the same period last year.

The two best-performing regions – North West England and North East and Yorkshire – recorded averages of 68 and 65.4 per cent respectively – also up slightly from last year.

Diagnosis rates were declining across England as a whole in the year before the pandemic, and continued to do so in 2019/20 and 2020/21.

The rate remains below target, although it improved slightly this year, with data showing it was up from 62.1 per cent to 64.3 per cent in September. The latest data, for November, showed the rate had climbed to 64.7 per cent.

The government has pledged to double funding for dementia research (iStock)
The government has pledged to double funding for dementia research (iStock)

James White, head of national influencing at Alzheimer’s Society, said the diagnosis rate had been slow to recover after hitting a five-year low during the pandemic. He said that the government must urgently make dementia a priority by investing in social care.

Paul Edwards, director of clinical services at Dementia UK, said the true number of people living with the disease is likely to be much higher than the NHS estimate because under-65s are not included in the figures.

He added that, unless post-diagnostic support for people living with dementia forms a key pillar of the Major Conditions Strategy, people will keep falling between the gaps.

“The consequence of which means more families will struggle to cope with issues which can be very complex issues on their own,” he said.

A Department of Health and Social Care spokesperson said the government is working to identify and treat more people living with dementia, and to provide potential new treatments as they become available.

“Alongside this, we are doubling the funding for dementia research to £160m a year by 2024/25,” the spokesperson added.