Inequality leaving 115,000 dementia cases ‘undiagnosed’ in England

More than 115,000 people with dementia are going undiagnosed because of where they live, analysis of official figures shows.

The number of adults living with dementia worldwide is on course to nearly triple to 153 million by 2050. In England, the NHS calculates that more than 700,000 people over 65 have dementia.

But analysis of NHS primary care dementia figures released last week reveals startling regional variation in diagnosis rates, with a 45 percentage point difference between the top and bottom performers. In all only 459,000 people in England actually have a recorded diagnosis, leaving more than 255,000 patients living with dementia without one.

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More than half of areas are failing to meet the government’s target dementia diagnosis rates of 66.7% by April 2024, while seven towns and districts have rates below 50%, including South Hams (44%) and Tonbridge and Malling (48%). In contrast, 90% of patients with dementia in Stoke-on-Trent have a diagnosis, while Nottingham, Rotherham and Southend also have rates above 80%.

It means that more than 115,000 people are missing out on a diagnosis because of where they live. If all areas had the same average diagnosis rates of 80% as the highest performers do, then 115,826 extra patients would know they have the condition.

The figures come as a report by the all-party parliamentary group on dementia found that, although dementia may be more prevalent in deprived and rural areas, only about a quarter of the variation can be explained by the level of deprivation or rurality.

It found a range of structural issues could prevent patients seeking or obtaining a diagnosis, including cultural barriers, difficulties in seeing a GP, long waits for memory assessment, lack of post-diagnostic support, insufficient scanners and problems travelling to appointments.

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Debbie Abrahams MP, the co-chair of the APPG on dementia, said: “All of the evidence shows that timely diagnosis is crucial for people with dementia, particularly in increasing access to drugs like donanemab, a new potential treatment for Alzheimer’s disease.

“But this report shows that at the moment diagnosis rates are simply a postcode lottery.”

The report calls on the government to “significantly increase” scanning capacity and workforce and for the NHS integrated care boards to introduce strategic local plans to increase access to diagnostic services.

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Responding to the findings, the shadow health secretary, Wes Streeting, said: “The Conservatives have failed to tackle the growing challenge of dementia, allowing patients in some parts of the country to be let down by a lack of equipment.

“No patient should suffer because of where they live. Labour will ensure the NHS is there for all who need it. The ‘fit for the future fund’ will double the number of scanners across the health service, paid for by abolishing the non dom tax status, to tackle the late diagnosis of dementia and other conditions.”

Fiona Carragher, the director of research and influencing at Alzheimer’s Society, said: “It’s unacceptable that your postcode, your mobility, or your support network can all be factors determining your chance of getting the diagnosis you deserve. Today, hundreds of thousands of people are facing dementia alone, unable to access the vital help and support that a diagnosis can bring.”

An NHS spokesperson said: “Dementia diagnosis rates are the highest they have been for three years, thanks to NHS staff, who have worked hard to recover services following the pandemic when people were less likely to come forward for care.

“NHS support for people affected by dementia is also improving, including through providing personalised care packages, but catching it early makes the biggest difference, so if you or a family member think something is not quite right, please come forward to your GP as soon as possible.”