Common symptoms of Lewy Body Dementia include:

• memory loss, particularly of recent events
• confusion which fluctuates day to day
• visual hallucinations
• shaking or feeling stiff
• increased falls
• feelings of anxiousness or depression
• changes in personality and behaviour

What causes it?

The cause of Lewy Body Dementia is not known. People with this condition have microscopic particles in their brains called Lewy bodies. These contain clumps of a naturally occurring brain chemical called alpha synuclein but scientists have not yet worked out why this chemical is deposited in the brain.

Key facts about Lewy body dementia

• Of the 750,000 people with dementia in the UK, around 30,000 will have Lewy Body Dementia.
• The risk of developing Lewy Body Dementia increases with age
• The condition is very similar to dementia caused by Parkinson’s disease.
• Some medicines should not be given to people with Lewy Body Dementia, so an early and accurate diagnosis is important.

How will it affect me?

People with Lewy body dementia may not be aware of any problems and may not want help, it is others around them who notice changes. The problems with movement such as stiffness and tremor may affect day-to-day tasks such as walking, writing and dressing. The confusion and changes in concentration and alertness (which tend to come and go in severity) can also affect daily living and place a strain on relatives and friends. As the illness progresses over years people may need more and more help.

Some of the symptoms also occur in other conditions (like depression, anxiety or Parkinson’s Disease), so it is important to be diagnosed by a doctor with the appropriate skills.

Assessment involves taking an account of your symptoms and how they developed, your background and current circumstances and the results of brain-function tests and a brain scan such as an MRI. A specialist brain scan called a PET scan can also help in some instances.

How is it treated?

There are drug treatments available for Lewy Body Dementia called cholinesterase inhibitors. These may help improve memory and reduce confusion but do not stop the illness progressing. They do not work for everyone but for some people the effects are very good. The doctor will want to monitor how you are responding to the treatment.

Most people with Lewy Body Dementia will have additional symptoms such as visual hallucinations or feeling anxious. Changes in behaviour such as losing motivation, or becoming excitable, especially at night during sleep, also need specialist assessment and treatment.

People with Lewy Body Dementia and their families and friends need a lot of support, practical help and education to help them understand the diagnosis, how the illness will progress, how to plan for the future and how to get help now. A specialist should be able to help put you in touch with people that can help.