Getting ready for disease modifying treatments (DMTs)

Why is system preparedness for DMTs important for dementia?  

If a disease-modifying treatment (DMT) were approved for use in the NHS today, there would be significant barriers to people with dementia being able to access the drug and benefit from its disease slowing effects. 

What are some of the barriers?

These key challenges are that not enough people receive an early diagnosis or have access to the specialist diagnostic tests required to confirm eligibility for treatment.

Getting a diagnosis

• One in three people with dementia don’t have a diagnosis.
• Most DMT clinical trials involve people with mild Alzheimer’s or mild cognitive impairment, so it is unlikely that people who have progressed passed these stages would be eligible for DMTs.
• DMTs often deliver greater benefits in the early stages of Alzheimer’s disease, but evidence has found that people live with symptoms for an average of 3.5 years before getting a diagnosis.

Access to specialist tests

• Confirming Alzheimer’s pathology to determine eligibility for DMTs may require a PET scan or cerebrospinal fluid (CSF) test via a lumbar puncture. However, currently only 2% of patients at memory services receive these tests.
• 14% of clinics lack access to PET scans, and over half don’t have access to CSF tests. 

What are we calling for?

Alzheimer’s Society is calling on governments across the UK to commit to long-term investment in dementia diagnosis, recognising that improving dementia diagnosis is vital to being ready for the DMTs of the future. It will also deliver benefits for people living with dementia today by unlocking access to information, care and support to help manage symptoms and reduce risk of crisis.

We are calling for national and local healthcare leaders to prioritise improvements in dementia diagnosis to increase the number of people who receive a diagnosis and who receive a diagnosis at an early stage of disease progression.  

Plans for delivery

We’re also calling for national and local healthcare system leaders across England, Wales and Northern Ireland to have agile plans in place for delivering DMTs and to review the status of these plans on a regular basis. This should be informed by all the relevant evidence to ensure appropriate preparedness.