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Dementia with Lewy bodies


Expert reviewers, Dr Daniel Edward Anderson, Psychiatrist, Dr Naveen Puri, Bupa Clinics GP and Lead Physician, and Adrian Raby, General Practitioner
Next review due January 2025

Dementia with Lewy bodies (or Lewy body dementia) is the third most common type of dementia. Dementia is a condition affecting your brain, causing problems with memory and thinking. Dementia with Lewy bodies can have some similarities to Parkinson's disease.

An older couple looking at a computer

What is dementia with Lewy bodies?

The term ‘dementia’ refers to a set of symptoms that can affect your memory and behaviour, and how you think and communicate. There are lots of different types of dementia. They may have slightly different symptoms and can be caused by different things.

In dementia with Lewy bodies, tiny clumps of protein known as Lewy bodies build up in nerve cells in your brain. It overlaps with another condition called Parkinson’s disease. Parkinson’s is also associated with build-up of Lewy bodies in the brain, but this condition causes problems with movement. People who have dementia with Lewy bodies may have symptoms of Parkinson’s disease as well as dementia.

It’s thought that at least one in 10 people with dementia have dementia with Lewy bodies. It’s more likely to affect you as you get older.

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Symptoms of dementia with Lewy bodies

Some symptoms of dementia with Lewy bodies are similar to other types of dementia such as Alzheimer's disease. These can include confusion and memory loss. But certain symptoms are more typical of dementia with Lewy bodies. These include the following.

  • Sudden changes in attention and alertness. Someone with dementia with Lewy bodies can suddenly become confused or ‘switch off’. They may become silent and unresponsive for several minutes at a time. This can change quickly throughout the day.
  • Hallucinations (seeing or sometimes hearing things that aren’t there). Visual hallucinations (seeing things) affect up to eight out of 10 people in dementia with Lewy bodies.
  • Difficulties with movement, similar to symptoms of Parkinson’s disease. These may include shuffling when walking, having limited facial movements and trembling. Around nine out of 10 people with dementia with Lewy bodies get difficulties with movement at some point.
  • Sleep disturbances. People with this type of dementia often have restless, disturbed sleep. They often have vivid dreams and may call out or act out their dreams in their sleep.

Contact your GP if you’ve noticed these changes in yourself or a loved one.

How dementia with Lewy bodies progresses

Like other types of dementia, dementia with Lewy bodies generally develops gradually and gets worse over time. But how quickly this happens is different for different people.

As dementia with Lewy bodies progresses, the affected person often starts to develop more problems with memory and behaviour. If they don’t have Parkinson’s symptoms early on in the disease, they may start to develop them as time goes on. They may start to have more problems with speech and swallowing, and with eating and drinking. They’re also at greater risk of falling and having serious injuries, due to their difficulties in walking.

As the condition progresses, the person with dementia will have more difficulty managing day-to-day life. They’re likely to need help with basic daily tasks such as washing and dressing. As the condition continues to get worse, many people eventually need to be looked after full time.

Diagnosis of dementia with Lewy bodies

It can take time to diagnose dementia. And it can be difficult to diagnose dementia with Lewy bodies because it can be mistaken for other types of dementia and other conditions. It’s important to get an accurate diagnosis because this will change how the person is treated.

If someone has possible symptoms of dementia, their GP will want to talk to them, as well as someone who knows them well. The doctor will ask about symptoms and what effects it’s having on the person’s day-to-day life. The GP will carry out a physical examination and may ask for blood and urine samples to rule out other conditions. They may ask the person a series of questions or to complete certain activities, to test for signs of dementia.

If a GP suspects dementia, they’ll refer the person to a specialist in dementia. The specialist may recommend some brain scans to help confirm the diagnosis. These include MRI and CT scans, and a specialised type of brain scan called a SPECT scan. This can help identify dementia with Lewy bodies.

Treatment for dementia with Lewy bodies

There isn’t a cure for dementia with Lewy bodies nor any way to slow it down. But there are medicines that can help with symptoms and other therapies that can support the person with dementia and their carers.

Medicines

Your doctor may prescribe medicines to help with different symptoms. These may include the following.

  • Medicines to improve thinking, attention and alertness. These include medicines called acetylcholinesterase inhibitors – most commonly rivastigmine (Exelon).
  • Medicines for sleep problems. These can include melatonin and clonazepam and are usually only taken for short periods.
  • Medicines for movement problems. A specialist in movement disorders may sometimes prescribe levodopa alongside other therapies. This is a medicine used in Parkinson’s disease, which can also treat movement problems associated with dementia with Lewy bodies. It’s not always effective and it can make other symptoms worse. So, any use of levodopa will be monitored very closely.
  • Medicines for anxiety and depression. An antidepressant may be prescribed if someone has symptoms of depression in addition to dementia.

 

If you’re caring for someone with dementia, it can be hard remembering what medicines they need to take and when. You may find it helpful to download our medicines planner for dementia carers (PDF, 0.8MB).

Supportive care for dementia with Lewy bodies

There are many ways of improving life for people with dementia that don’t involve taking medicines. Keeping active and maintaining social interactions will help with general mental wellbeing. The person’s doctor may recommend talking therapies and other activities to improve wellbeing. This can also help them to stay as independent as possible. The doctor may recommend physiotherapy and occupational therapy to help prevent falls and make sure the person’s home is as safe as possible.

The healthcare team should advise on practical support that may help with the day-to-day difficulties of living with dementia. They’ll offer advice and information to carers on how to support the person with dementia, as well as how to look after their own wellbeing. This might include support groups, counselling and respite care.

Causes of dementia with Lewy bodies

In dementia with Lewy bodies, clumps of protein (Lewy bodies) similar to those found in Parkinson’s disease build up in nerve cells in the brain. It’s not known exactly how this causes dementia, but they stop the brain nerve cells from working properly.

It’s not clear exactly why some people develop dementia with Lewy bodies. There may be a genetic factor, with some people having a family history of the condition. But this isn’t the case most of the time – for most people, the cause is unknown.


Image of a part of the brain under a microscope, showing a Lewy body 

A close-up of part of the brain under a microscope. A chemical has been added to show up
a certain protein. The black ring shows a clump of this protein. This is a Lewy body.

Outlook for dementia with Lewy bodies

It can be upsetting to read but being prepared for what to expect can help with planning ahead. Someone with dementia with Lewy bodies is likely to need a lot of care as the condition progresses. How long someone may live varies from person to person and is difficult to predict. On average, people survive between five to seven years following a diagnosis. There is lots of support and advice available to help those affected by dementia. For details of organisations that can help, see our section: Other helpful websites.

Frequently asked questions

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  • Other helpful websites Other helpful websites

     

    Discover other helpful health information websites.

  • Sources Sources

    • Dementia. NICE Clinical Knowledge Summaries. cks.nice.org.uk, last revised May 2021
    • Dementia with Lewy bodies (DLB): what is it and what causes it? Alzheimer's Society. www.alzheimers.org.uk, last reviewed 1 September 2021
    • Dementia with Lewy bodies. BMJ Best Practice. bestpractice.bmj.com, last reviewed 20 September 2021
    • Parkinson's disease. BMJ Best Practice. bestpractice.bmj.com, last reviewed 20 September 2021
    • Dementia: assessment, management and support for people living with dementia and their carers. National Institute for Health and Care Excellence (NICE), published June 2018. www.nice.org.uk

  • Author information Author information

    Reviewed by Pippa Coulter, Freelance Health Editor, January 2022
    Expert reviewers, Dr Daniel Edward Anderson, Psychiatrist, Dr Naveen Puri, Bupa Clinics GP and Lead Physician, and Adrian Raby, General Practitioner
    Next review due January 2025

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