The Right to Know: Accurate and Earlier Diagnosis of Dementia

Diagnosing dementia before symptoms

Most people living with dementia are only diagnosed when they or a loved one notice the common clinical symptoms associated with it, such as memory loss. However, scientific evidence suggests that changes in the brain associated with dementia occur much earlier than commonly thought. These changes can happen as many as 10-15 years prior to the onset of visible clinical symptoms.

Current dementia assessment services are not able to routinely offer the range of diagnostic tests needed to offer accurate and early diagnosis. In this report, we outline a staged approach to reform to progressively build our capabilities and better prepare the system for the changes that may come.

There are concrete actions we can already take

There is a case for change now, to improve diagnostic accuracy by ensuring services can offer NICE guidance diagnostics. There is also a case for change for what we know is likely coming next. Namely, to prepare for earlier diagnosis in clinical settings, as well as for the arrival of potential disease-modifying treatments. Only after these steps are progressed, is there a case to be made for the future, with much wider implementation of new diagnostics and a move towards pre-symptomatic diagnosis.

Alzheimer’s Research UK therefore commits to these actions:

• Engage the NHS, NICE and other relevant health stakeholders on the challenges and opportunities highlighted in this document.
• Continue our ongoing leadership of the Dementia Access Taskforce to ensure critical work around access to treatments is kept at pace.
• Engage with the Department of Health and Social Care on the forthcoming dementia strategy to ensure the issue of diagnostics is appropriately addressed.