System preparedness for dementia disease modifying treatments

Currently, there is no cure for dementia. However, there are disease modifying treatments (DMTs) on the horizon, which are able to slow the progression of disease by targeting the root causes, rather than just addressing symptoms of the disease.

In 1989, Alzheimer’s Society funded ground-breaking research on amyloid which has since shaped Alzheimer’s disease research. There are now DMTs that slow down the progression of early-stage Alzheimer’s disease, with over 100 Alzheimer’s disease drugs in clinical trials.

For a treatment to become available on the NHS, it would need to be approved by both the MHRA (Medicines and Healthcare products Regulatory Agency), who assess the drug for efficacy and safety, and NICE (National Institute for Health and Care Excellence), who assess the drug for clinical and cost effectiveness. Once the drugs are approved, health systems have a timeframe to begin delivering these treatments, which is why the system needs to be ready. 

Why is system preparedness for DMTs important for dementia? 

Thousands of people in the UK could potentially benefit from these new drugs if they’re approved for use, but the healthcare system is not yet ready to deliver them.

Access to these drugs would rely on early and accurate diagnosis. Yet currently more than one third of people with dementia don’t have a diagnosis, and for those who do, research has found that on average people have symptoms for 3.5 years before they receive it.  

Access to these drugs would also require a specialist diagnostic test that confirms that a person has Alzheimer’s disease. Currently this means a PET scan or a cerebrospinal fluid (CSF) test via a lumbar puncture, yet only 2.1% of patients at memory services receive specialist tests such as these. 

What are we calling for?

Alzheimer’s Society is calling on the NHS in England and Wales and HSC (health and social care) system in Northern Ireland to publish plans on how they intend to deliver new treatments.  

These plans must include specific investment in the diagnostic staff and resources needed to ensure that everyone with suspected Alzheimer’s disease can access a test to confirm eligibility for treatment at an early stage in their disease progression. 

How have our dementia campaigners been involved? 

• In the lead up to the 2024 General Election, campaigners both added their name and invited their prospective parliamentary candidates (PPCs) to sign our Make Dementia a Priority pledge, which included a focus on preparing the system for DMTs.  
• Alzheimer’s Society’s submission to regulatory bodies for the appraisals of new DMTs included contributions from campaigners.
• Campaigners have invited their local MPs to attend debates in Parliament on system readiness and new treatments for Alzheimer’s disease.  
• Our campaigning community have and will continue to be updated on the latest news on new treatments via campaigner emails, with the opportunity to get involved with dementia research.