Some 36% of dementia sufferers in England remain undiagnosed, report says

A call is being made for new, better and different ways to ensure that dementia cases do not go undiagnosed as a report says that 36% of sufferers in England are unknowingly living with the illness.

The call is made in a new Dementia Commission report, led by former health minister Lord James O’Shaughnessy, which suggests ways the Government could tackle “alarming” rates of undiagnosed dementia.

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.”

Some 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.

Researchers have also found the gap in dementia diagnoses has grown by 8.3% when compared to pre-pandemic levels in 2019.

The situation calls for a change in healthcare delivery where accountable Integrated Care Systems (ICSs) can play a key role, the report suggests.

ICSs are partnerships of organisations that come together to plan and deliver joined up health and care services, and to improve the lives of people who live and work in their area.

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.

They are calling for new pathways, accountable ICSs, and better data as potential ways to try and tackle the issue so dementia cases do not go undiagnosed.

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.

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.

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