Curia Dementia Commission: 36% of dementia sufferers remain undiagnosed in England in new 'alarming' figures

Around 36% of people are unknowingly living with dementia, as the Curia Dementia Commission calls for new, better and different ways to ensure dementia cases do not go undiagnosed. The latest report led by former health minister Lord James O’Shaughnessy, suggests ways the government could tackle “alarming” rates of undiagnosed dementia.

This comes as the researchers found the gap in dementia diagnoses has grown by 8.3% when compared to pre-pandemic levels in 2019. Lord O’Shaughnessy, who co-chairs the Curia Dementia Commission, warns: “This is a critical juncture for our healthcare system. The unrelenting rise in undiagnosed cases demands a paradigm shift in our approach to dementia care.”

Around 36% of dementia sufferers in England currently remain undiagnosed – while the worst 25% of local authorities (LAs) are witnessing rates as high as 50%, according to the latest estimates for 2023 from the Office for Health Improvement and Disparities.

The situation calls for a change in healthcare delivery where accountable Integrated Care Systems (ICSs) - partnerships of organisations come together to plan and deliver joined-up health and care services - can play a key role, the report suggests. It is also hoped that data-driven insights could be used to help shape and improve models of care.

Professor Mike Bewick, NHS England’s former deputy national medical director and co-chair of the NHS Innovation and Life Sciences Commission, said: “Beyond the statistics, there lies an opportunity to reshape our healthcare landscape. We envision a future where data is not just a tool but the foundation of effective, accountable, and patient-centric care”.

Attempts to try and improve dementia diagnosis rates should be a collective effort, requiring collaboration between healthcare professionals, policymakers and the community, the commissioners say as they call for new pathways, accountable ICSs, and better data as potential ways to try and tackle the issue so dementia cases do not go undiagnosed.

Some recommendations include enhancing early detection and prevention of dementia which could help in providing effective care. Changes are also required to current treatment and care pathways to ensure they meet patients' needs, the report says.

A task force, made up of health and social care professionals, patients, and caregivers could help to review and redesign this issue. The views of patients and caregivers could also be brought into decision-making processes and investment could also be made in technology-driven solutions, such as telehealth platforms to enhance communication and coordination among different care providers.

Health checks for patients could also help spot any physical challenges they may face that could affect their cognitive decline or need additional treatment or support. Improvements to post-diagnosis support and investment in health and social care staff training is also called for.

An expert panel could be brought together to look into the ethical implications of AI in dementia diagnosis and treatment. A common digital platform in which patients and their carers can access their medical records, be informed about suitable clinical trials and receive information about local services is also among the recommendations.