Future Health has published research which shows that over 300,000 people living with dementia in England go undiagnosed: 220505_Levelling Up Dementia Diagnosis – Web

The report finds:

• A postcode lottery for dementia diagnosis, with large variations across England, including between neighbouring healthcare authorities
• The pandemic has seen a reduction in the proportion of patients receiving a diagnosis, with the number falling below 60% – missing the Government target of two thirds
• £3billion could be saved with better diagnosis rates of dementia, as report calls for pandemic recovery investment and an urgent public health campaign to encourage people to visit their GPs if they have concerns

The report was covered in the Telegraph and other national titles: https://www.telegraph.co.uk/news/2022/05/17/rise-hidden-dementia-nhs-fails-spot-thousands-cases/

The research from Future Health was commissioned and funded by Roche Products Ltd to further the understanding of care for people with Alzheimer’s disease and other forms of dementia. Headline findings reveal:

There are approximately 325,862 people living in England who have dementia which has yet to be diagnosed. This is based on the estimated prevalence levels of people with dementia (756,719) compared to those who have been formally registered as having the disease (430,857).

The Midlands is home to the highest number of undiagnosed people with dementia, with over 60,000 people with the condition not yet diagnosed.

London and the North West have the lowest number of undiagnosed people living with dementia but both regions still have over 30,000 people undiagnosed.

At individual CCG level, Dorset, Norfolk and Fylde and Wyre have the most serious challenges, having some of the highest prevalence rates of dementia but some of the lowest diagnosis rates in the country.18 of the 22 CCGs with the highest rates of undiagnosed cases of dementia, have higher than average proportions of their populations living in rural areas.

The report also highlights a postcode lottery when it comes to diagnosis rates, with significant disparities between neighbouring CCGs in the same region. For example, in Stoke-on-Trent, 83% of estimated dementia patients have been diagnosed, while in neighbouring Stafford and Surrounds only 48% of people have been diagnosed.

The report also considers the economic impact of improving early diagnosis and treatment for the current population, estimating improvements in spotting and treating the disease earlier could lead to over £3billion in savings to the NHS and individual patients, through reduced healthcare usage and lower carer costs.

With the Government’s new Dementia Strategy expected imminently, the report lays out several recommendations to improve diagnosis rates and tackle regional variations including setting new targets to identify and treat specific subtypes of dementia, using new digital tools to monitor people at risk and distributing diagnosis equipment to areas in the country that need it the most.

The report also calls for an urgent increase in the training of neurologists and a national public health campaign to help people identify the early signs of dementia and reduce the stigma so that people feel comfortable approaching their GP.

Richard Sloggett, Founder of Future Health and a former special advisor in the Department of Health and Social Care, said: “The pandemic has set back the progress made on dementia diagnosis rates and urgent action is now needed to support recovery. The forthcoming dementia strategy must tackle regional disparities, particularly in how patient access to a diagnosis in rural areas can be improved. New targets, investment in diagnostics and technology along with a public health campaign can all help deliver a dementia diagnostic recovery that ensures patients get access to the treatment, care and support they deserve.”

Sam Bolam, CEO of carers of people with dementia network tide (together in dementia
everyday), said: “We hear regularly from those in our network about how difficult it is to get an accurate and timely diagnosis; and this report shows the scale of the challenge we now face. Any new dementia strategy must provide additional support for carers to help them in their critical
role in supporting people with this complex condition.”

Fiona Carragher, Director of Research and Influencing, Alzheimer’s Society said:

“The current policy environment presents a unique opportunity to align the upcoming Department of Health and Social Care’s new national strategy with NHS England’s long-term plan reset and ensure dementia is a whole system priority as much for health as for social care.

“We at the Alzheimer’s Society therefore welcome this report and its findings, as it evidences the need to address regional and health disparities to improve the experience of diagnosis in a fair way. As we move beyond the Covid-19 pandemic, we must now urgently work together to improve diagnosis, ongoing care and outcomes for people living with dementia.”

Dr Charles Marshall, NHS Cognitive Neurologist said: “Our research funded by Barts Charity shows that ethnicity and deprivation may affect the risk of developing dementia and of receiving an accurate diagnosis. Any new Government dementia strategy needs to ensure that it tackles the inequalities in diagnosis rates set out in this report. Delivering this will need proper investment across the country in the new equipment, technology and workforce that can improve disease detection and support better patient outcomes.”