January 28th marks World Lewy Body Day, an occasion dedicated to raising awareness about what’s often called “the most common form of dementia you’ve never heard of.” This year marks the second annual observance of this global awareness day, which coincides with the birthday of Dr Fritz Jacob Heinrich Lewy, the neurologist who first identified the protein deposits—known as Lewy bodies—that define this condition.
A global movement for change
World Lewy Body Day unites patients, caregivers, medical professionals, and advocacy organisations across the globe to spotlight the realities of living with this often-overlooked condition. For 2025, organisations from eleven countries have joined forces to improve understanding, foster support, and advocate for better care for the millions of people worldwide affected by Lewy Body Dementia (LBD).
Despite being the third most common form of dementia after Alzheimer’s and Vascular dementia, LBD remains relatively unknown. Research reveals that around 15% of all dementia cases in the UK are attributed to Lewy Body Dementia, affecting an estimated 100,000 people across the nation.
What is Lewy Body Dementia?
Lewy Body Dementia is a neurodegenerative disease caused by abnormal deposits of a protein called alpha-synuclein in the brain cells. These deposits—known as Lewy bodies—disrupt the normal functioning of brain regions responsible for memory, movement, mood, and cognitive processes.
Symptoms of LBD can be wide-ranging and often overlap with other conditions, making diagnosis challenging. Common symptoms include:
- Visual hallucinations
- Movement disorders, similar to those seen in Parkinson’s disease
- Cognitive problems, including difficulties with thinking, memory, and judgement
- Autonomic dysfunction, such as issues with blood pressure and temperature regulation
Understanding the terminology
LBD is an umbrella term covering two specific disorders:
- Dementia with Lewy Bodies (DLB) – A standalone brain disorder.
- Parkinson’s Disease Dementia (PDD) – Dementia that develops in individuals diagnosed with Parkinson’s disease.
How you can make a difference
World Lewy Body Day is about more than raising awareness; it’s about creating change. Here’s how you can get involved:
- Spread the word: Share posts about LBD on social media, and engage with others to spark meaningful conversations.
- Advocate: Talk to friends, colleagues, and even elected officials about the importance of recognising and addressing LBD.
- Support groups: Participate in online or local support networks to connect with those living with or caring for someone with LBD.
- Back regional organisations: Donate to or volunteer with LBD-focused charities and initiatives in your area.
By coming together as a global community, we can ensure that Lewy Body Dementia no longer remains in the shadows. January 28th is an opportunity to support those affected, champion research, and bring understanding to one of the most complex forms of dementia. Let’s make 2025 a year of progress and awareness.
Learn more with the ‘Living with Lewy’ podcast
For an in-depth exploration of Lewy Body Dementia, tune in to the ‘Living with Lewy’ podcast by ITN Business. Hosted by Ashley Bayston, Founder and Chair of the Lewy Body Society, the podcast features personal stories from those living with LBD, insights from carers, and expertise from clinicians and researchers. It’s an invaluable resource for anyone looking to understand the condition and its impact on individuals and families.
