A new Dementia Commission report led by former Health Minister, Lord James O’Shaughnessy sets out ways the government can tackle ‘alarming’ rates of undiagnosed dementia.
At Westminster Abbey, attendees of the Dementia Pledge Launch gathered to demonstrate their support for fighting dementia and building support systems. The launch event was supported by Eli Lilly.
Speakers included:
- Andrew Stephenson MP – Minister of State (Department of Health and Social Care)
- Debbie Abrahams MP – APPG Dementia (Co-Chair)
- Baroness Wheeler
- Elliot Colburn MP – APPG Dementia (Vice Chair)
- Lord James O’Shaughnessy – Curia’s Dementia Commission (Co-Chair)
- Dr Hilda Hayo – Chief Admiral Nurse and CEO Dementia UK
- Emily Pegg – Medical Director Eli Lilly
Download the report: 2023 Dementia Commission Report
Diagnosis and Care
Office for Health Improvement and Disparities latest estimates for 2023 reveal a staggering reality: 36% of dementia sufferers in England remain undiagnosed. In a more disconcerting revelation, the worst 25% of Local Authorities (LAs) are witnessing rates as high as 50%. These findings underscore a pressing need for transformative approaches to dementia care and diagnosis with solutions set out by policy institute Curia’s Dementia Commission. Commissioners can be found here.
The alarming statistics, brought together by policy institute Curia supported by population health data specialists VUIT bring attention to the significant gap in dementia diagnoses, prompting a call for urgent action. As the nation grapples with the repercussions of the COVID-19 pandemic, the diagnosis deficit has not only persisted but has grown by 8.3% when compared to pre-pandemic levels in 2019.
Dementia Care
To kick off the event, Andrew Stephenson advocated for a person-centred approach and reflected on the past few decades to look how far we have come in care for other diseases such as HIV/AIDS. He was firm in his belief that dementia should not be a death sentence and that those with dementia are not a burden on society.
Tackling Inequalities
Debbie Abrahams discussed the inequalities in dementia diagnosis which arise from regional disparities. She highlighted the thousands of people who are living with undiagnosed dementia and pointed to the cross-party work conducted by the APPG for Dementia, in particular, their report which she worked closely on with Angela Browning. This was published in October and focuses on raising barriers to diagnosis.
One aspect of the report focuses on Integrating Care Systems (ICSs) and states that they must develop a comprehensive dementia strategy. The current situation calls for a radical change in healthcare delivery, moving towards a new paradigm where ICSs play a pivotal role. These accountable entities are now at the forefront, championing innovative models of care, propelled by data-driven insights.
“The more that we do, the UK can lead internationally in developments for the whole world”
Debbie Abrahams MP
Similarly, Lord James O’Shaughnessy and Emily Pegg highlighted the need for innovative funding and change within diagnosis care pathways which prioritises accurate and timely diagnosis. Lord O’Shaughnessy advocated for a holistic approach through collaborative and integrated care to improve lives. Through discussing progress made in research and the recommendations set out in the Dementia Commission Report, he expressed how there is now an opportunity for hope which has been denied to people for so many years.
Elliot Colburn also pointed to the importance of integration and noted how as a former NHS Commissioner he could see patients being let down due to the lack of collaboration. He also advocated for the use of new technologies and expressed excitement over AI advancements targeted for person-centred care. The speakers also shared some personal stories, as Elliot discussed how cruel of a virus dementia is and stated “you do not recognise that person by the end of their life”.
Valuing Carers
Crucially, Baroness Wheeler emphasised the role of carers and argued that a more comprehensive system is needed. Many carers are family members who are unpaid and research shows that 42% would like better support and recognition of their needs. Moreover, support provided to both those with dementia and their carers must reflect societal diversity and cultural inclusion to provide real help to ethnic minorities.
Dr Hilda Hayo also pointed to the “24 hoursness” of care and highlighted the importance of family experiences.
Combatting Stigma
An important theme highlighted by many of the speakers was the importance of combatting stigma. Stigma restricts people from seeking potential diagnosis early as there is much societal fear surrounding dementia. Dr Hilda Hayo pointed that many people are scared that a diagnosis will mean long-term care and a stripping of their drivers license, for example. She also pointed out that negative terms are often used in association with dementia such as “sufferer” or “ticking time bomb”.
About Curia
Independent, cross-party, and not-for-profit, as a policy institute Curia turns policy into practice as the UK’s first “do tank”. Curia hosts four commissions including NHS Innovation and Life Sciences, Levelling Up, ED&I and Education. Curia provides evidence-based consultancy services, due diligence, and socio-economic and environmental analysis. Commissions share best practice through partner publishing and broadcasting agency Chamber UK.
In response to the dementia crisis, through the Dementia Commission healthcare professionals, policymakers, and stakeholders are advocating for the implementation of new pathways for dementia diagnosis and care. These pathways, anchored in the principles of ICSs, aim to address the diagnostic deficit head-on, ensuring a comprehensive and integrated approach to dementia care.
“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,” emphasises former Deputy National Medical Director at NHS England and Co-Chair of the NHS Innovation and Life Sciences Commission, Professor Mike Bewick.
The charts and data available in the 2023 Dementia Commission report reveal a pressing need for immediate intervention. The new models of care proposed are not only a response to the current crisis but a forward-looking strategy to build a resilient and responsive healthcare system.
Commissioners have recommended that the journey towards improved dementia diagnosis rates is a collective effort, requiring collaboration between healthcare professionals, policymakers, and the community. As England confronts this challenge, the rallying cry is clear: new pathways, accountable ICSs, and better data are the keystones to unlocking a future where no dementia case goes undiagnosed.
Watch the full event here: