Improve dementia diagnosis

There are tens of thousands of people living with dementia in England without a diagnosis. We want to help them access the care and services they deserve.

Receiving a timely diagnosis can help people and their loved ones to plan for the future, receive emotional and practical support, and better manage symptoms. It can make dementia feel less daunting for those affected.

In the film below, Gina discusses how her diagnosis of vascular dementia has opened the door to getting support. You can also read Gina's story.

What are we calling for?

Our recommendations to the government are: 

  1. An immediate funding injection of £70m over two years to tackle the growing backlog.  

  1. An audit of memory services to; collect backlog data per memory service; understand the level of access to scans each service has; understand workforce gaps and the impact of staff burnout; discover innovative practice to reduce backlogs and provide safe, timely diagnosis. This data should then be used to target additional support in areas with high backlog levels and to share best innovative practice.  

  1. Develop improved diagnosis pathways in primary care through engaging with primary care networks to increase efficiency and confidence in dementia diagnosis.

What is the current state of diagnosis in the UK?

Diagnosis rates have fallen to a five-year low due to Covid-19. We estimate there are around 30,000 people in England living with dementia who would have been diagnosed had the pandemic not happened.

This means they don’t have access to the vital care and support that a diagnosis can bring.  

In 2021, there were 117,195 open referrals to memory services. This means people are being referred to the right services, but there is a significant delay in being seen and assessed.

We estimate that it would take more than 4 years to clear the current backlog – and that’s only if there are no new referrals!

Why is it important to get dementia diagnosed?

For people experiencing the symptoms of dementia, being diagnosed at an earlier stage gives them a chance to adjust and get access to:  

  • Support. There is no cure for the diseases causing dementia yet, but there is lots of support that can help people live as well as possible. As well as helping people plan for the future (such as setting up power of attorney) and access therapies and support groups, diagnosis may also mean that people get access to medicines that can help manage symptoms. 

  • Benefits and protections. Being diagnosed with dementia means you are protected from discrimination (being treated unfairly) at work by law. It can also give you access to financial benefits. 

  • Information that will help people understand what you’re going through. Dementia can cause changes in your mood and behaviour. If you have been feeling low, getting irritated easily, or acting differently, a diagnosis can help people understand what you have been dealing with. They may be better able to support you.  

  • Time. Many people say that receiving an early diagnosis gave them time to develop coping strategies and to re-arrange their lifestyles to spend more quality time with loved ones. 

A focus on diagnosis during Dementia Action Week 2022

In May 2022, our DAW parliamentary event engaged 100 MPs and their offices about people’s experiences of dementia diagnosis.

Over 6,300 of our supporters sent letters to their MPs asking them to attend.

And this is only the beginning – we’re working with stakeholders to press the government to make diagnosis a key part of their new 10-year plan for dementia to be published later in 2022. 

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