Lewy body dementia (LDB) is one of the most common forms of dementia in older people. It is thought to affect around 130,000 people in the UK.ย
Lewy body dementia, also known as dementia with Lewy bodies (DLB), is a form of dementia that has a lot of similarities with Parkinson’s disease. It affects both mental skills and motor skills, and can make day-to-day tasks very difficult.
This page will guide you though what Lewy body dementia is, what causes it, the symptoms, how it’s diagnosed and how it can be treated.
What is Lewy body dementia (LBD)?
Lewy body dementia is a type of dementia. LBD occurs when certain proteins group together inside brain cells. These protein deposits are known as Lewy bodies.ย
They typically form in the parts of the brain which control thinking, vision, and muscle movement. This causes disruption and affects the ability of these parts of the brain to function.
This protein build-up also happens with Parkinsonโs disease, and Lewy body dementia is sometimes misdiagnosed as this.
Both illnesses are caused by the build-up of Lewy bodies, and both illnesses lead to disrupted mobility. The key difference is that people with Parkinson's disease do not show as much cognitive decline, but people with LBD do.
What causes Lewy body dementia?
As mentioned, Lewy body dementia is caused by the build-up of proteins called Lewy bodies in the brain. These Lewy bodies lead to the death of nerve cells in the brain. They often build up in areas linked to memory and movement, which is why they cause difficulties with these brain functions.
It is not known exactly what causes the build-up of Lewy bodies in the brain, and there is no clear role played by genes. Scientists are continuing to search for genes associated with a heightened risk.
Age is the only major factor clearly associated with an increased risk of LBB. People who have Parkinson’s disease or REM sleep disorder behaviour are also more at risk.
What are the symptoms of Lewy body dementia?
Some symptoms of dementia with Lewy bodies are the same as other types of dementia, particularly Alzheimer’s disease, ย such as lapses in memory, decreased processing speed, and difficulty with language. However, it does have some differentiating symptoms which we have listed below and people with LBD will have at least one of these symptoms.ย
Lewy body dementia symptoms
Hallucinations
Hallucinations are a symptom of LBD that are not seen so often in other types of dementia. LBD-induced hallucinations can range from being distressing to amusing for the person experiencing them.
Mobility problems normally associated with Parkinson's disease
Dementia with Lewy bodies can cause severe difficulties with mobility. This can include difficulty walking, uncontrollable shaking, and shuffling when walking (as seen in people with Parkinson's disease). People with LBD are also more prone to falling over.
Fainting
One of the symptoms of Lewy body dementia is being prone to fainting. People living with LBD may benefit from a personal alarm with built-in fall detection, and a visit from an occupational therapist to make their home safer.
Rapid swings between alertness and confusion
Rapid swings between being alert and being confused or dopey is a unique symptom of LBD compared to other types of dementia. It is, however, also a symptom of delirium, which is often misdiagnosed as dementia.
Difficulty swallowing
Difficulty swallowing, also known as Dysphagia, is common in people who have Lewy body dementia. If this affects your relative, you may want to read our tips on getting someone with dementia to eat more.
Difficulty sleeping
People with LBD often have great difficulty with their sleep cycle. This may lead them to sleep during the day, or be very active while sleeping at night. Our tips on getting someone with dementia to sleep more will be useful if you are experiencing this problem.ย
The new generation of smart home monitoring systems can allow a person with dementia to live in their own home, more safely, for longer. Using non-intrusive passive sensors, you can receive updates on your relative with dementia's activity, health and behaviour.
Find out more about the best services for remote monitoring that can help a person with Lewy body dementia stay in their own home.
How is Lewy body dementia diagnosed?
As with most types of dementia, there is no single method of making a diagnosis for Lewy body dementia.
A doctor will take a medical history and consider all symptoms. A follow-up appointment might be suggested in order to make a comparison of how symptoms progress, and ability to respond to questions and cognitive tests.
MRI, SPECT, and CT scans might be required to check for damage to the brain and any indication of dementia with Lewy bodies.
Can dementia with Lewy bodies be treated?
Sadly there is not a cure for LBD, or any treatments which can help to slow its progress. There are, however, medicines and treatments that can be used to help manage the symptoms of Lewy body dementia.
Lewy Body Dementia Medicines
Acetylcholinesterase (AChE) inhibitorsย have been proven as effective medication for hallucinations, confusion and sleepiness in some people with LBD.
Memantineย can be used by people with moderate-to-severe LBD for people that cannot take AChE inhibitors.
Levodopaย is a drug that can help people with Lewy body dementia who struggle with their mobility. It can, however, worsen some other symptoms.
Other LBD Treatments
Occupational therapyย can help a person who has dementia with Lewy bodies to identify solutions to aspects of their day-to-day routine that they struggle with.
Physiotherapyย can help to address some of the mobility problems that are common in people with LBD.
Psychological therapies such asย cognitive stimulationย can help to improve memory, language and problem-solving skills.
There is dedicated support for people with LBD from the Lewy Body Society. You can read about other organisations providing support for rarer types of dementia in our guide to dementia support and help across the UK.