Dementia with Lewy Bodies – one of the most common diseases you’ve never heard of


By Dr Daniel Erskine | Friday 26 January 2024

I love being a dementia researcher. I spent a lot of my early life in different jobs but always sought a career that would give my life meaning. In the context of sustained global ageing, dementia is one of the greatest challenges facing humanity, and it gives me a huge amount of pride to be able to work in this field and share what my team and I are learning.

There are different diseases which cause dementia. You have probably heard of the most common of these: Alzheimer’s disease. However, there are other types of dementia that we don’t hear about as often, such as dementia with Lewy bodies, also referred to as DLB. Both DLB and Parkinson’s disease are types of Lewy body disease. I truly feel honoured to dedicate my research to understanding DLB, a condition we often describe as “one of the most common diseases you’ve never heard of.”

To mark the first ever World Lewy Body day (28 January), here are some of the things I would like you to know about the condition and the innovative research that is getting us closer to a cure.


How does dementia with Lewy bodies affect people?

As with other types of dementia, each individual experience of DLB is different, but most people with the condition will experience changes to their thinking and behaviour that will get worse over time. A person living with DLB may experience symptoms including confusion, problems with movement and features such as hallucinations, particularly seeing objects that aren’t there. Thinking and memory are also affected, though these are often less prominent than in Alzheimer’s disease.


How many people have DLB?

For every 100 people with dementia approximately 10-15 will have DLB. This means that there are at least 100,000 people living with the condition in the country, but it is worth noting that this is an estimate as we don’t yet have the reliable data we need that tells us how many people are affected.

Compared with Alzheimer’s disease, other forms of dementia get much less attention, despite appearing to have a greater impact on people affected by them. For example, there’s evidence that people with DLB have worse outcomes, and that the disease has a greater impact on carers than Alzheimer’s does. This is why I’m so passionate about my research and about raising awareness of DLB. I really feel that as a society we cannot halt our efforts in understanding more about DLB because this will open the door to the treatments that people with the condition deserve.


What are Lewy bodies?

In healthy brains, a protein called alpha-synuclein is found in large quantities. Its function is not well understood but it is thought to help brain cells communicate with each other. Proteins are long chains of smaller molecules that normally fold into a 3D structure which helps determine their function – alpha-synuclein is a bit unusual as it seems to sometimes not have a structure and other times it does. However, one thing that is clear is that it folds incorrectly in DLB and starts to stick together, ultimately forming clumps inside brain cells called ‘Lewy bodies.’

Interestingly, while Lewy bodies are found throughout different areas of the brain in DLB, this does not seem to be accompanied by a widespread loss of brain cells compared to other forms of dementia like Alzheimer’s.


How is my research helping understand DLB?

My team and I have found that, in the brains of individuals with DLB, not all brain cells develop Lewy bodies – an important observation that we hope will help us figure out why they form in the first place. This suggests that DLB causes changes to the way the brain works, rather than widespread death of brain cells, which may indicate that there is more potential for research to find ways to fix it.

Work such as this has only been possible thanks to individuals who generously donate brain tissue after they have passed away. We are incredibly lucky to have outstanding brain tissue resources in the UK, such as the Newcastle Brain Tissue Resource at Newcastle University and the UK-wide Brains for Dementia Research project.

We have also been incredibly lucky to be supported by Alzheimer’s Research UK to develop a new way to study DLB, which involves studying brain tissue samples donated by people who have had brain surgery. We can keep this tissue alive in the laboratory for weeks to grow active nerve cells that help us investigate dementia in living pieces of human brain.

Because the samples come from older people, these nerve cells potentially provide a more accurate way to study diseases like DLB, which typically occurs in later life, than studying the disease in animals like mice or fruit flies. Moreover, because they come from human brain tissue, our samples contain other types of cell, for example, specialised brain cells called glia, making the experimental model more representative of a real human brain.


Are Lewy bodies really the enemy?

A major focus of my laboratory is trying to determine whether Lewy bodies are really harming brain cells in this disease. Over successive research projects, we have consistently found that brain cells with Lewy bodies do not seem to be more damaged than those without them. In fact, paradoxically, in some respects they appear to be healthier.

Our recent work suggests Lewy bodies might serve as “bins” within cells to partition waste that accumulates with age. This could suggest they are performing a helpful role rather than damaging brain cells as often thought.

We are currently investigating this further, but these results are particularly interesting as we already know that enzymes which break down certain types of waste in the brain don’t work properly in a significant number of people with DLB. We hope we can build on these findings to better understand DLB and, most importantly, design therapies to make a difference to the lives of people with the condition.


Hope for the future

Some of our findings challenge the traditional views on how the disease occurs and progresses, as Lewy bodies have long been thought to be the main cause of damage to brain cells in DLB. However, it is really important that we perform this work, as understanding diseases like DLB is what will enable scientists to create treatments that will genuinely change the future for people affected by DLB.

In the next year, we are focused on trying to understand what changes occur in brain cells as Lewy bodies form, in the hope that we can try to produce Lewy bodies in the lab. Such work will give us an unprecedented understanding of why these are forming and give us a greater insight into why DLB occurs and, therefore, how it may be treated.

Research is absolutely the only way to change the ending for people living with DLB and other types of dementia. We are so grateful to Alzheimer’s Research UK and their supporters for continuing to support our work.



To learn more, you can catch up on the Lab notes event, ‘Spotlight on dementia with Lewy bodies’ where Dr Daniel Erskine and Professor Alan Thomas talk about their research into dementia with Lewy bodies.


Getting involved in research

The best way to find out about taking part in dementia research studies is through a nationwide register called Join Dementia Research. Join Dementia Research is not a research study itself but a place to find out what studies you can take part in and enrol to take part. Signing up to the register is not a commitment to take part in any particular study, it just allows research studies to find willing volunteers.

You can find out more and register to Join Dementia Research here, or by calling 0300 111 5 111 (9-5pm Monday to Friday).


More information about dementia

These dementia information pages and booklets provide more information about causes, symptoms, diagnosis and treatment. If you have any questions about dementia or dementia research, the Dementia Research Infoline is here to help. You can give them a call on 0300 111 5 111 (Mon-Fri 9-5pm) or email

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About the author

Dr Daniel Erskine

Alzheimer’s Research UK Senior Research Fellow

Dr Daniel Erskine is an Alzheimer’s Research UK Senior Research Fellow based at Newcastle University with a primary research interest in Lewy body diseases.