Setting out a bolder vision for the future

We are clear – Alzheimer’s Society wants to be bold and ambitious and make dementia the priority it must be.

As a scientist and innovator I know we have to think of ways to do things differently.

It was a year ago when we found out we had won ￡5m from the People’s Postcode Lottery Dream Fund to launch the Blood Biomarker Challenge.

I’ll never forget that day.

We got this cheque and said to the research world – tell us what you’ve got, bring us your best!

And they did just that.

The aspiration set out by us and our partners, Alzheimer’s Research UK and National Institute of Health and Care Research, was to make the case for introducing a blood test for dementia into UK healthcare settings.

We started out intending to fund one research team but got two fantastic proposals.

I went to our Board and said ‘we’re trying to change the world and we’ve got two teams who want to do that with us’.

We’ve now got two world-class projects being run by two dedicated dementia research leaders - Professor Jonathan Schott and Dr Vanessa Raymont.

Transforming diagnosis

I was thrilled they were able to join us at the Alzheimer’s Society Annual Conference where we heard from many brilliant speakers with much of the focus on dementia diagnosis.

We finished the day by hearing from Vanessa and Jonathan which was a great way to round off the conference. I left feeling hopeful and inspired by these two projects which could completely disrupt the way we diagnose dementia.

Earlier this week we presented new evidence which shows we spend ￡80m per year on diagnosis which is just 1.1% of total healthcare costs. This for a condition which costs the UK economy ￡42bn and is set to rise to ￡90bn by 2040 unless action is taken.

Yesterday, I heard whispers of ‘so exciting!’ during the presentations by Jonathan and Vanessa.

Let’s not whisper this – let’s shout about it.

This is ground-breaking, system-shaking research with the potential to completely overhaul the way we diagnosis dementia.

Blood tests for Alzheimer’s disease exist and have been tested in research labs. However, evidence is needed to show that they can work for patients in the real world. The teams led by Jonathan and Vanessa will work to gather the information needed to show they can work in NHS settings.

I worked in the NHS for 25 years and while there I witnessed the power of new diagnostic tools in transforming outcomes for patients.

Timely and accurate diagnosis

Over a third of people living with dementia in the UK don’t have a diagnosis, and only around 2% of people get the sort of specialist test which can accurately confirm their diagnosis.

New research by Walnut Unlimited found just 1% of people couldn’t see any benefits of getting a dementia diagnosis.

These are the reasons why I believe that we all have a role to play in addressing these issues and ensuring as many people as possible have a timely, accurate diagnosis of dementia.

People deserve to know exactly which illness they have. They deserve the chance to plan for the future and to understand what is happening to them.

In addition, if new drugs such as lecanemab and donanemab are approved for use in the NHS, people will need a diagnosis of Alzheimer’s disease confirmed by a specialist test.

They will also need a speedy diagnosis as the drugs are most effective when people are in the early stages.

But we know people are having to wait months and, in some cases, even years for a diagnosis.

These are the first treatments ever which appear to slow down the progression of Alzheimer’s disease, but, if they were approved tomorrow, we simply wouldn’t be ready for them.

So, what can we do about diagnosis?

First and foremost, as has been discussed in other sessions at the conference, we need to see bold, ambitious but achievable new diagnosis rate targets set across England, Wales and Northern Ireland (the three nations Alzheimer’s Society works in).

This must be accompanied by investment into the workforce and infrastructure that’s needed to diagnose more people and identify those who could be eligible for new treatments if approved.

Read a new report we commissioned on the economic impact of dementia here

Read more about how blood tests could transform diagnosis here

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