The Lewy Body Society is calling on the government to improve the lives of 100,000 people with Lewy body dementia in the UK, in the face of the global dementia health crisis.

Affecting 11 million people worldwide, the number of individuals with this Lewy body dementia is predicted to rise dramatically as life expectancy increases and diagnostic efficacy improves.

On the second annual World Lewy Body Day, the Lewy Body Society, the UK’s only and Europe’s first charity solely dedicated to Lewy body dementia (LBD), has unveiled its Lewy List.

Jacqui Cannon, CEO of Lewy Body Society, said: “On World Lewy Body Day, we are united with our colleagues around the world to call for action. Lewy body dementia is the most common form of dementia in older people after Alzheimer’s disease.

“Despite the vast number of people living with the condition, awareness is limited, resulting in millions more across the world who remain undiagnosed and untreated.

“There are four priorities on the Lewy List we will be delivering to Downing Street.”

• The right for all people living with dementia to be treated with dignity and respect

• The right to early and accurate diagnosis

• The right for Lewy body dementia to be recognised as a distinct form of dementia with unique symptoms and challenges, different from Alzheimer’s

• The right not to be denied care home admittance on account of a Lewy body dementia diagnosis

Jacqui added: “We are calling on the UK Government to address these critical issues by improving professional training, increasing access to care, supporting families, and substantially investing in robust LBD research.”

Lewy body dementia is a complex and challenging disease that causes visual hallucinations, fluctuations in alertness, and sleep problems as well as affecting memory, thinking, movement and behaviour. It requires accurate diagnosis and specialised care.

It is frequently misdiagnosed as Alzheimer’s or Parkinson’s disease, with potentially fatal consequences.

Jacqui said: “Around half of all people with Lewy body dementia were wrongly told they had something else and some will have suffered the wrong treatment.”

Kerry Hine’s husband Charles died aged 72 of Lewy body dementia in 2024. She faced significant challenges in getting the proper diagnosis and treatment for her husband Charles due to the lack of knowledge about Lewy body dementia in the healthcare profession.

Kerry said: “We had kept going to the doctor, but they just did short-term memory tests, asking Charles to remember a name and address when he came in and then asking him again about 10 minutes later, a quarter of an hour later. He could remember it fine, because that’s not how Lewy body dementia works.

“Doctors need to be trained, healthcare workers need to be trained. MPs need to pay more attention to Lewy body dementia.”

Jacqui said: “Please sign our Lewy List petition to show your support for people impacted by Lewy body dementia so they get the proper diagnosis, treatment and care they deserve.”