Dementia with Lewy bodies
Your health experts: Dr Daniel Edward Anderson, Psychiatrist and Dr Naveen Puri, Bupa Clinics GP and Lead Physician, and Adrian Raby, General Practitioner
Content editor review by Pippa Coulter, January 2022
Next review due, January 2025
Lewy body dementia is the third most common type of dementia. Dementia is a brain condition causing problems with memory and thinking. Dementia with Lewy bodies has similarities to Parkinson's disease.
What is dementia with Lewy bodies?
The term dementia refers to a set of symptoms affecting memory, behaviour, how you think and how you communicate. There are many different types of dementia with slightly different symptoms, and caused by different things.
In dementia with Lewy bodies, tiny clumps of protein (Lewy bodies) build up in nerve cells in your brain. Parkinson’s disease is similar. Parkinson’s is associated with build-up of Lewy bodies in the brain, but cause problems with movement. So people with Lewy body dementia may have Parkinson’s disease symptoms as well.
At least one in 10 people with dementia have this type. It’s more common with age.
Causes of dementia with Lewy bodies
In Lewy body dementia, clumps of protein (Lewy bodies) similar to those found in Parkinson’s disease, build up in nerve cells in your brain. We don’t know exactly how, but they stop the nerve cells in your brain from working properly.
For most people, the cause of this is unknown. There may be a genetic factor as some people have a family history of the condition, but most don’t.
Symptoms of dementia with Lewy bodies
Like other types of dementia, Lewy body dementia generally develops gradually and gets worse over time. How quickly this happens varies.
Some symptoms are similar to other types of dementia, including confusion and memory loss. Other symptoms are more specific.
- Sudden confusion, or ‘switching off’. People may be silent and unresponsive for several minutes at a time. This can change quickly throughout the day.
- Seeing or hearing things that aren’t there (hallucination). Up to eight out of 10 people experience hallucination in dementia with Lewy bodies.
- They may have restless, disturbed sleep, with vivid dreams. They may call out or act out their dreams in their sleep.
- Movement difficulties similar to Parkinson’s disease. These include shuffling walk, limited facial movement, and trembling. Around nine out of 10 people get these at some point. They can affect speech, swallowing and lead to greater risk of falls and serious injury.
People have increasing difficulty managing day-to-day life. They’ll need help with basic tasks, such as washing and dressing. Many people eventually need to be looked after full time.
Diagnosis of dementia with Lewy bodies
Diagnosing dementia takes time. Dementia with Lewy bodies can be mistaken for other types of dementia, and other conditions. It’s important to get an accurate diagnosis, as this will change the treatment.
If someone has possible dementia symptoms, their GP will want to talk to them, and someone who knows them well. They’ll ask about symptoms and how they’re affecting day-to-day life. A physical examination and blood and urine samples can help to rule out other conditions. The GP will test for signs of dementia by asking the person questions and to complete certain activities.
If a GP suspect dementia, they’ll refer the person to a specialist. The specialist may recommend brain scans to help confirm the diagnosis. These include MRI and CT scans, and a specialised brain scan called a SPECT scan, which can help identify Lewy body dementia.
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Treatment for dementia with Lewy bodies
There isn’t a cure for Lewy body dementia, or any way to slow it down. But medicines can help with symptoms. Other therapies can support the person with dementia and their carers.
Medicines
Medicines to help with different symptoms may include the following.
- Medicines to improve thinking, attention and alertness. These include medicines called acetylcholinesterase inhibitors – most commonly rivastigmine (Exelon).
- Short term medicines for sleep problems, including melatonin and clonazepam.
- Medicines for movement problems, such as Levodopa. This is used in Parkinson’s disease. It doesn’t always help and can make other symptoms worse. So your doctor will monitor you very closely if they suggest trying it.
- Antidepressants for anxiety and depression if you have 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, when. You may find it helpful to download our medicines planner for dementia carers (PDF, 0.08MB).
Supportive care for dementia with Lewy bodies
There are ways of improving life for people with dementia that don’t involve taking medicines. Keeping active and seeing people helps with general mental wellbeing. The person’s doctor may recommend talking therapies and other activities to improve wellbeing. This can also help maintain independence. The doctor may recommend physiotherapy and occupational therapy to help prevent falls and make sure the 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 carers advice and information on how to support the person with dementia - and how to look after themselves. This might include support groups, counselling and respite care.
Outlook for dementia with Lewy bodies
It is upsetting, but knowing what to expect can help with planning ahead. Someone with Lewy body dementia is likely to need a lot of care as the condition progresses. They may eventually need residential care.
How long someone may live varies and is difficult to predict. On average, people live between 5 to 7 years after diagnosis.
There can be a range of symptoms, including sudden changes in attention and alertness, hallucinations and difficulties with movement. See Symptoms section for more information.
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This information was published by Bupa's Health Content Team and is based on reputable sources of medical evidence. It has been reviewed by appropriate medical or clinical professionals and deemed accurate on the date of review. Photos are only for illustrative purposes and do not reflect every presentation of a condition.
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- 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
