Lewy body dementia diagnosis data revealed for the first time

The new data will help NHS staff understand how many people are affected by the condition and better plan their care. But it shows that diagnosis rates for Lewy body dementia need to improve.

Why is the data important?

People living with Parkinson's are 6 times more likely to develop dementia. There are 2 main types of dementia that can affect people with Parkinson's: Parkinson's dementia and dementia with Lewy bodies.

Our Nobody really knows us report found that the health and social care system is failing to meet the needs of people with these conditions. 

Having this new data will mean the NHS can better tailor care to the specific needs of people with dementia with Lewy bodies. The symptoms of Parkinson’s-related dementia mean that people have fluctuating needs and may need complex care packages. 

Collecting the data will also help make sure health and social care professionals are appropriately trained so they can care for people with Parkinson's-related dementia.

Find out more about Parkinson's-related dementia.

What have we done?

Our Nobody really knows us report called on the NHS to publish the data on different types of dementia. In 2023, the NHS started publishing dementia diagnosis rates by subtypes, but these didn't include Lewy body dementia or Parkinson's dementia.

Following further influencing with our partner charities, the NHS data released in July for the first time included the diagnosis rates for Lewy body dementia that we've been calling for.

What's next?

We need diagnosis rates to improve because the data shows that there is currently a considerable underdiagnosis of Lewy body dementia.

Rowan Wathes, Associate Director of Policy and Health Strategy for Parkinson's UK, said: 
“We really welcome the release of data on Lewy body dementia. This was a recommendation made in our Nobody really knows us report and helps us understand the extent of Lewy body dementia diagnosis in England.

"However, the figures reported are much lower than we'd expect, which shows that there are many people with Lewy body dementia without a recorded diagnosis.

"That's why we will continue to call on NHS England to improve the training of health and social care professionals so that they can better diagnose and care for people living with Parkinson's-related dementia."