Welcome to the Lewy Body Society

The Lewy Body Society is a charity registered in England and Wales (number 1114579) whose mission is to fund research into Lewy body dementia (LBD) and to raise awareness of the disease. LBD is the second most common form of age-related neurodegenerative dementia after Alzheimer’s, accounting for approximately 15-20% of all people living with dementia. We also hope to provide a community focus for those who suffer from dementia with Lewy bodies (DLB) along with their carers and families. The website provides information to help those who need to understand the disease and its impact.




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Frequently asked questions

Dementia with Lewy bodies (DLB) is the second most common cause of dementia in older people, affecting approximately 130,000 individuals in the UK together with their carers and relatives. It is sometimes also referred to as Lewy body disease or Lewy body dementia.
Lewy bodies are deposits of abnormal proteins inside brain cells and are named after Dr. Friedrich Lewy who first described them under the microscope in 1912. Lewy bodies are associated with the death of brain cells and subsequent deterioration of the brain.
DLB shares characteristic symptoms of Alzheimer’s disease (AD) and Parkinson’s disease (PD), with both mental and motor problems. There are problems with memory, concentration and other cognitive abilities similar (but not identical) to AD and difficulties with balance, movement and autonomic functioning (bladder, bowel, blood pressure control) as in PD.
People with DLB characteristically experience dramatic swings in their level of alertness, fluctuating from clarity to confusion, often in a short period of time. Visual hallucinations are common in DLB, typically of people and animals, which are vivid but silent. Although they may have other Parkinsonian symptoms, the tremor associated with PD is not always present. Because DLB, AD and PD share so many symptoms, diagnosis of DLB can be difficult and requires an experienced specialist e.g. in old age psychiatry or neurology. Accurate diagnosis is essential for successful treatment.
At present there is no cure for DLB but symptoms can often be alleviated. Research indicates that some AD drugs may be helpful for people with DLB. Parkinson’s drugs may help some people with the motor symptoms but can increase confusion in others. Prescribing should generally be started by a doctor with experience of DLB. Some types of drug (antipsychotics) drugs should not be given to people with DLB as they can be extremely harmful. Non-medical interventions such as a daily routine, physical activity where possible and changes to the environment are all helpful in managing daily life.
If you would like to take part in a research study through ‘Join Dementia Research’ then click the button.

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Lewy Body Society @lbsorg RT @beatdementia: Our charity helpdesks provide a valuable service to #JoinDementiaResearch. Find out more: https://t.co/2KhVa0ZPPZ 20 hours ago
Lewy Body Society @lbsorg RT @DementiaVoices: Fantastic to hear - The #DEEP network growing & thriving because of the passionate belief & commitment of all! https://… 20 hours ago
Lewy Body Society @lbsorg RT @lbsorg: In true RAG style, all profits from a Cambridge Blues 2017 Calendar go directly to @lbsorg & Help Refugees. https://t.co/cIssHN 2 days ago
Lewy Body Society @lbsorg RT @ioftweets: Take a look at excellent upcoming IoF Groups #fundraising events on our training calendar! https://t.co/tfc1gdr2a5 https://t… 2 days ago