A guide to Lewy body dementia
Lewy body dementia (LBD) is one of several types of dementia. It is a common but often poorly recognised brain disorder which affects many parts of the brain, as well as some organs outside the brain, in ways that scientists are still trying to understand. As with other forms of dementia, its symptoms make it difficult for the person with the condition to do everyday tasks that once came easily.
Although less well-known than Alzheimer’s and Parkinson’s diseases, LBD is not a rare disorder. It is often described as ‘the most common disease you’ve never heard of’, and it accounts for about 10-15 per cent of all people with dementia. Approximately 125,000 people in the United Kingdom live with its disabling effects upon their ability to think and act. Taking into account families and other carers of those living with the disease, it probably affects the lives of at least half a million people in the UK.
As researchers seek better ways to treat LBD – and ultimately to find a cure – people with LBD and their families often struggle with delay in receiving an accurate diagnosis, accessing the best advice about supportive treatments and managing the disease at home.
This guide mainly uses the term Lewy body dementia. You may sometimes see other terms used as there are two closely related types of LBD: dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD). Both are also included in the term Lewy body disease, which also includes people with Parkinson’s disease (without dementia)’.
The difference between DLB and PDD is essentially the timing of some of the major symptoms, which is explained on pages 10 and 13. In this guide the term Lewy body dementia (LBD) will be used unless something pertains particularly to either DLB or PDD.
This guide is intended to help people with LBD, their families and carers and healthcare professionals, to learn more about the disease and the impact it has. It explains what is known about the different types of LBD and how they are diagnosed. Most importantly, it describes how to treat and manage this difficult disease, with practical advice both for people with LBD, their families and carers.
The Lewy Body Society, established in June 2006 in the UK, was the first charity in Europe exclusively concerned with Lewy body dementia. Our mission is to fund clinical research to improve the diagnosis and treatment of the disease. We also raise awareness of Lewy body dementia amongst the general public and those in the medical professions and decision-making positions, and we provide information resources for people with dementia and carers.
This 2024 edition of the guide is a revised version of one of our most popular resources. It is available to freely download from our website
and those who require hard copies should contact us. We would like to thank everyone who has donated to the Lewy Body Society
or completed fundraising events. We have such a strong network of supporters, many of whom have been personally affected by the
disease, and by enabling us to produce this guide they are directly helping others.
You can keep up to date with our work by visiting our website at www.lewybody.org, following us on Facebook, Instagram, LinkedIn Bluesky or search for us on YouTube to watch information videos.
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