A new report (Are UK health systems dementia ready FINAL 110424) from Future Health and sponsored by Lilly, highlights the growing challenge of diagnosing people with dementia in the UK. The report has been covered in the Telegraph this morning: https://www.telegraph.co.uk/news/2024/04/21/half-million-cases-dementia-could-undiagnosed-by-2040/

By 2040 the number of dementia cases is set to rise to 1.5 million as the population ages. The research finds that if there is no progress in improving diagnosis rates then over half a million people with dementia will be undiagnosed by 2040, nearly a quarter of a million more than today. Currently an estimated 850,000 people have dementia in the UK, with 315,000 people undiagnosed. Without a diagnosis, dementia patients are unable to access the care and support they need, and will not be able to benefit from the potential arrival of new treatments.

The report finds that current dementia diagnosis rates across the UK vary significantly. In England the rate is improving, but performance at 64.6% is still below the two thirds target. In Wales the diagnosis rate is 53.9%. Whilst this represents a slight improvement since 2018 – when the Dementia Action Plan was published – the rate of improvement has not been at the 3% a year improvement target set.[1] Diagnosis rates in Northern Ireland and Scotland are difficult to accurately assess. The rate in Northern Ireland has been estimated to be 62%.[2] In Scotland estimates vary from 30-65% depending on methodologies and timeframes used.[3]

Within countries there are also stark variations in diagnosis rates. Only 15 of 42 (36%) NHS Integrated Care Boards (ICBs) in England are meeting the two thirds dementia diagnosis target. Ten ICBs record a rate of below 60%. Herefordshire ICB has the lowest rate nationally of 53.7%, followed by Somerset ICB with 55.3% and Dorest ICB with 56.5%. Five of the bottom ten ICBs for diagnosis are in the South West (Somerset ICB, Dorset ICB, Bath, North East Somerset, Swindon and Wiltshire ICB, Devon ICB and Cornwall ICB).  By contrast five ICBs (Nottingham and Nottinghamshire ICB, Staffordshire and Stoke on Trent ICB, South West London ICB, Greater Manchester ICB and South Yorkshire ICB) have diagnosis rates above 70%.[4]

In Wales, Cardiff and Vale University Health Board records the highest rate at 65.3%. This is over 20% higher than Powys Teaching Board, which has the lowest rate (44.3%).[5]

The research models three scenarios for dementia diagnosis rate trajectories to 2040. If diagnosis rates in 2040 were to be the same as today across the four UK nations, nearly a quarter of a million more people – over 565,000 in total – will have dementia and not have a diagnosis.

An improvement across all UK nations to the two thirds target set in England would see a smaller but still significant increase of 175,000 undiagnosed cases to 490,000 cases.

Only if all four nations were to significantly increase diagnosis rates to 80% would there be a reduction in the numbers of undiagnosed people with dementia overall in 2040 in comparison with today. Even under this scenario, there would still be close to 300,000 undiagnosed dementia cases.

With the potential arrival of new treatments for dementia, a timely and accurate diagnosis will be increasingly important to get people the care they need. The research argues that against this backdrop of rising cases and the opportunities of innovation, policymakers need to work more rapidly to build healthcare systems that are ‘dementia ready’. Whilst dementia is regularly cited as a political priority by Ministers across the nations of the UK, national strategies in many cases have lapsed; nominated clinical leadership for dementia is unclear; guidelines, commissioning policies and standards require revision and diagnosis targets are not being met.

An analysis of eight indicators assessing the political and policy prioritisation of dementia across the four countries, finds that just a quarter of policies assessed are up to date, in place and being delivered. Nearly 40% require some revision or greater effort to deliver with a similar number rated as ‘red’ – either out of date, well off track from being delivered or both.

Whilst Scotland has recently published a new dementia strategy and two year roadmap for delivering priority commitments, in England and Wales existing national dementia strategies and action plans have expired.[6][7][8] Northern Ireland has not had a national dementia strategy since 2011.[9]

The report calls for each country to publish a system readiness plan for new potential treatments by the end of the year, supported by increased investment in diagnostics and scaling up post diagnostic support offers for patients. To address low diagnosis rates, the report calls for new more ambitious dementia diagnosis targets to be set along with the introduction of financial incentives to support their delivery.

Richard Sloggett, Programme Director at the Future Health Research Centre and report author said: “Progress is being made on increasing dementia diagnosis rates, but this research shows that business as usual will not deliver what patients need. The expected significant increase in dementia cases means that without investment in increased diagnostic capacity and capability more and more people will have undiagnosed dementia and be unable to access the treatment and care that they need. The publication of system readiness plans for new treatments coupled with new diagnosis targets backed up with investment in diagnostics and incentives should be a priority for each Government of the four UK nations.”

Laura Steele, President and General Manager, Lilly UK said: “We are proud to sponsor Future Health’s research report, which describes the stark variation in diagnosis rates and care across the four nations and highlights the need for action to improve dementia services for patients and their loved ones. The UK needs to improve its diagnostic capabilities to tackle inequalities in diagnosis rates and ensure people can access the right care and support. For more than 35 years, Lilly has been driving scientific progress to improve outcomes for people affected by dementia. We are deeply committed to partnering to discover and deliver innovative solutions that can pave the way for a better future for people affected by this devastating condition, but access to a timely and accurate diagnosis must be the starting point.”

[1] https://www.gov.wales/sites/default/files/publications/2019-04/dementia-action-plan-for-wales.pdf

[2] https://www.health-ni.gov.uk/publications/202223-raw-disease-prevalence-trend-data-northern-ireland; https://www.alzheimers.org.uk/sites/default/files/2021-12/Dementia%20UK%20prevalence%20estimate%20for%202021%20methodology.pdf

[3] https://www.thedetail.tv/articles/disparity-in-dementia-diagnosis-across-northern-ireland; https://dementiastatistics.org/about-dementia/diagnosis/

[4] https://digital.nhs.uk/data-and-information/publications/statistical/primary-care-dementia-data/december-2023

[5] https://www.gov.wales/general-medical-services-contract-quality-assurance-and-improvement-framework-interactive-dashboard

[6] https://www.gov.scot/publications/new-dementia-strategy-scotland-everyones-story/

[7] https://assets.publishing.service.gov.uk/media/5a80d3ce40f0b62302695b8c/pm-dementia2020.pdf

[8] https://www.gov.wales/sites/default/files/publications/2019-04/dementia-action-plan-for-wales.pdf

[9] https://www.health-ni.gov.uk/publications/improving-dementia-services-northern-ireland-regional-strategy