Calling on the Government to demand a better future for people living with dementia

Following the appointment of the new Secretary of State for Health and Social Care, Alzheimer’s Society, Alzheimer’s Research UK and Dementia UK are publishing a letter, signed by 48 key stakeholders, calling for a bold national ambition for the Modern Service Framework for Dementia and Frailty.

Here is the letter we have sent:

Dear Secretary of State,  

Dementia is one of the greatest challenges facing the UK. It is our leading cause of death, and the impact on families and public services is growing to unsustainable levels. Without decisive action, prevalence is going to rise rapidly and outcomes will worsen.  

Yet we are also entering a fundamentally different era. For the first time, there is a clear opportunity to change the trajectory of dementia - if the system is ready to act.  

Recent breakthroughs include:  

• Diagnostics: blood tests, neuroimaging and digital tools are making earlier, more accurate and more accessible diagnosis a reality.  
• Treatments: The first Alzheimer’s treatments able to slow the progression of the disease now exist, with more than 130 additional candidates in clinical trials - unlocking immunotherapies unimaginable even five years ago.  
• Prevention: Up to 45% of dementia cases globally could be prevented through action on known risk factors, such as smoking and hearing loss. Rising incidence is not inevitable. We can change it.  

This convergence of rising need and transformative scientific opportunity means the decisions made now will determine outcomes for millions of people over the next generation.  

Other countries are already acting at pace to prepare their systems for this shift:  

• Diagnostic infrastructure: European countries are accelerating the use of biomarkers in dementia diagnosis. 30% of patients in Italy and around 20% in Germany and Spain have access to biomarker testing, compared to just 5% in the UK.  
• Treatment rollout: Countries such as the US and Japan are beginning to deliver disease-modifying therapies.  
• Trials and research: Global competition for clinical trial placement is accelerating, driven by diagnostic capacity and system readiness.  

All of this means the UK risks falling behind. To change course, the Modern Service Framework for Dementia and Frailty must signal a decisive national shift.  

As leading charities and clinicians, we are unanimous in our belief that the Framework must set a clear 10-year ambition:  

That no matter who you are or where you live, your chance of dying from dementia will be reduced; and if you develop dementia, you will live longer with a better quality of life.  

This is a once-in-a-generation opportunity to reshape the future. We need an ambition that galvanises the health and care system, government, industry and research community to act differently. 

An ambition focused on reducing mortality and compressing the time people spend in the most severe stages of dementia will set the direction the nation now needs to follow.    

Alongside this longer-term ambition, we must recognise that the health and care system is failing to deliver the outcomes that people with dementia deserve today.    

For too many families, a diagnosis still marks the beginning of uncertainty. The system is not yet configured to deliver coordinated, end-to-end support. Provision of care remains fragmented and variable across the country, with long waits, unclear pathways and limited access to specialist input.    

To address this, we need to see a coherent national approach and strengthened workforce capacity - including access to specialist dementia nursing and multidisciplinary expertise. 

Without this, advances in diagnosis and treatment will not translate into better outcomes over the longer term. 

That is why the Framework must do two things:  

• Drive rapid improvements to the current pathway so that people living with dementia can access the appropriate care and post-diagnostic support they need to improve their experience today.    
• Deliver on this moment of unprecedented opportunity - providing the clarity, leadership and long-term direction required to transform outcomes for people affected by dementia over the next 10 years and beyond.  

We urge you to use this moment to set a bold national direction. We shared this letter with your predecessor, however the decisions you make now will shape dementia outcomes for the next generation – your leadership is critical for ensuring this opportunity is not missed.  

Yours sincerely,  

Dame Suzi Leather DBE, Chair, Alzheimer’s Society  

Hilary Evans, CEO, Alzheimer’s Research UK  

Hilda Hayo, CEO, Dementia UK  

Co-signed by 48 clinicians, academics, charity CEOs, care organisations, and Royal Colleges.