Improving dementia diagnosis

Receiving an early, accurate diagnosis can help people and their loved ones plan for the future, receive emotional and practical support, and better manage symptoms. It can make dementia feel less daunting for those affected by the condition.

Just 1% of people surveyed by the Alzheimer’s Society saw no benefits of getting a diagnosis. However, a third of the people living with dementia in the UK don’t have a diagnosis at all.

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.

Dementia improvements - What are we calling for?

1. Bold, ambitious and achievable new diagnosis rate targets must be set by Governments and health systems in England, Wales, and Northern Ireland.
2. Improvements to diagnosis to ensure that in future, everyone living with dementia can access an early, accurate diagnosis if they want it, including information on the type of dementia they have.
3. The publication of plans on how health systems will deliver disease modifying treatments for dementia, including a specific focus on diagnosis with investment in the tools and workforce needed to diagnose more people.
4. The Governments and health services across the three nations should tackle the regional inequalities and postcode lottery in dementia diagnosis. We know that diagnosis rates vary significantly from place to place, so support must also be provided to local systems to deliver on targets set.

Why is it important to get a dementia diagnosis?

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

Time. An early and accurate diagnosis can allow people living with dementia and their loved ones more time to adjust to life with the condition, and to plan for the future. Evidence suggests that early diagnosis can help people feel more in control and live independently in their own homes for longer.

Support and treatment. There is no cure for the diseases causing dementia yet, but support is available to help people after their diagnosis. This includes access to therapies and support groups, interventions like cognitive stimulation therapy (or CST) and existing symptomatic treatments. By accessing support like this early, people can maintain better quality of life for longer.

Benefits and protections. Being diagnosed with dementia means people are protected from discrimination (being treated unfairly) at work by law. It can also grant access to financial benefits in some cases.  

Understanding. Dementia can cause changes in a person’s mood or behaviour. A diagnosis can help contextualise these changes for the person living with dementia and their loved ones, and reduce stigma. 

What do diagnosis rates mean, and what is the current state of dementia diagnosis?

Diagnosis rates are calculated by comparing the number of recorded dementia diagnoses with estimated dementia prevalence (the number of people we estimate are living with dementia in a particular area). This calculation can be made at a local and national level to create a diagnosis rate as a percentage. The higher this percentage, the more, in theory, people have access to the vital care and support they deserve.  

During the Covid-19 pandemic, diagnosis rates across the nations hit a five-year low, and have been slow to recover. In England, NHS Digital statistics show that the dementia diagnosis rates as of July 2024 are at 65.2%. 

In Northern Ireland, based on our research, diagnosis rates are estimated to be approximately 55%, with over a third of people yet to receive a diagnosis.

In Wales, based on recent data published by the Welsh government, the diagnosis rate is approximately 56%.

We are calling on Governments in England, Wales and Northern Ireland to take action to improve dementia diagnosis rates and set more ambitious  diagnosis rate targets for the future, to ensure that everyone living with dementia can access the vital care and support a diagnosis can bring. 

What have our dementia campaigners been involved in?

• Through invites from their constituents, almost 150 politicians attended our events during Dementia Action Week 2024 to learn more about dementia diagnosis.
• At these events we were able to highlight the inconsistencies with dementia diagnosis rates through different regions and nations, and supported people living with dementia to speak with MPs about their diagnosis experience.
• Hundreds of campaigners contributed evidence to an APPG on Dementia report into the current state of diagnosis.
• We secured the publication of subtype diagnosis data for England, agreement from the Department of Health in Northern Ireland to work on better dementia data, and for the first time since 2018, we now have a national dementia diagnosis rate in Wales. This is thanks to concerted influencing work, fuelled by the voices of campaigners, who shared their diagnosis experiences.