A Guide To Lewy body dementia - Lewy Body

A Guide To Lewy body dementia - Lewy Body



A Guide To Lewy body dementia


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A guide to Lewy body dementia


Lewy body dementia (LBD) is one of several types of dementia. It is a complex, challenging and common brain disorder which affects many parts of the brain in ways that scientists are still trying to understand. As with other forms of dementia, its symptoms make it difficult for the patient to do everyday tasks that once came easily.

Although less well-known than Alzheimer’s and Parkinson’s diseases, Lewy body dementia is not a rare disorder. It is often described as ‘the most common disease you’ve never heard of’, yet it accounts for about 15-20 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 Lewy body dementia– and ultimately to find a cure – people with Lewy body dementia 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 sub-types of Lewy body dementia: dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD). They are also sometimes collectively referred to as Lewy body disease.

The difference between them 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 Lewy body dementia, 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 Lewy body dementia and how they are diagnosed. Most importantly, it describes how to treat and manage this difficult disease, with practical advice both for people with Lewy body dementia, their families and carers.

About the Lewy Body Society


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.
Overview
Who is affected by Lewy body dementia?
What are Lewy bodies?
Types of Lewy body dementia
Parkinson’s disease dementia
Comparison with Alzheimer’s disease
Causes and risk factors
Symptoms
Cognitive symptoms
Movement symptoms
Sleep disorders
Behavioural and mood symptoms
Other Lewy body dementia symptoms
Diagnosis
How is Lewy body dementia diagnosed?
What’s going on?
Tests used to diagnose Lewy body dementia
What are the possible outcomes of the assessment?
Next steps after a diagnosis of dementia
Treatment
Coping with cognitive symptoms
Coping with movement symptoms
Coping with sleep disorders
Coping with behavioural and mood problems
CAUTION about antipsychotic medications
Surgery
Other treatment considerations
Non-drug treatments
Advice for patients and carers
Plan for your future
Find enjoyment in every day
For carers
Research — the way forward
Resources
Disclaimer
Acknowledgement

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