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Welcome to the Lewy Body Support Group. This is a service provided by the charity Rare Dementia Support (RDS) to support people affected by Dementia with Lewy Bodies (DLB). The pages here provide information about DLB, as well information on our DLB Support Meetings.

For information about Rare Dementia Support, visit our homepage.


Dementia with Lewy bodies (DLB) is a less common form of dementia that is closely related to Parkinson's disease. DLB is sometimes called Lewy body disease or Lewy body dementia. These are different names to describe the same condition. About 10-15% of all patients with dementia have DLB. This means that approximately 130,000 people in the UK have DLB. It affects both men and women, usually older than 65 years.

What are Lewy Bodies?

Lewy bodies are protein deposits that can be found in the brain of people with DLB and with Parkinson’s disease. Scientists still don’t know exactly how they cause dementia but they may lead to loss of connections between brain cells. The symptoms that people with DLB will experience depend on where the Lewy bodies are found. When Lewy bodies are mostly found in the deeper parts of the brain, they lead to problems with movements and Parkinson's disease. When they are found in the outer parts of the brain they tend to lead to DLB.

Common symptoms of DLB:

DLB affects different people in different ways. It often causes problems with concentrating and staying alert. Although day to day memory can also be affected, it is less of a problem than in patients with Alzheimer's disease. Patients and their families often notice that thinking and memory problems vary from day to day or even hour to hour. DLB can also cause visual hallucinations. These are seeing animals or people that are not really there. In many people, these are not troublesome, and would only need treatment if they become distressing. People with DLB may notice that their movements are slower or stiff. Some people have problems with falling. Other symptoms can include problems with bladder or bowel function, and sleep troubles. DLB is a progressive condition and symptoms generally become worse over time. The rate at which symptoms become worse varies from person to person.


It may at times be necessary to change the dates of planned meetings. Therefore, we hope that the below acts as a guide helping you to pencil the dates into your diaries, but we will always give at least a month’s notice with the finalised dates.


The Lewy Body Support Group is run by a team based at UCL Dementia Research Centre (DRC) as part of Rare Dementia Support, a small charity funded by the National Brain Appeal.

Currently we provide support meetings. If you need help with individual symptoms of the disease, please contact your local DLB or Parkinson’s team.

Contact Rare Dementia Support here


Dr Rimona Weil, Consultant Neurologist


Dr Angelika Zarkali, Alzheimer's Research UK Clinical Research Fellow