Dementia with Lewy bodies (DLB), may account for about 15 percent of all cases of dementia in the UK. It’s thought that DLB on its own affects over 100,000 people in the UK alone, making it one of the leading causes of dementia in the UK. But DLB is still relatively unknown, compared to other types of dementia.
Related: What is dementia?
DLB has some of the same symptoms as Alzheimer’s disease and Parkinson’s disease, and can be wrongly diagnosed as these and other conditions. It is most common in people over 65.
Related: Learn more about Alzheimer's disease
Related: Find out more about Parkinson's disease
Lewy bodies – named after the doctor who first discovered them – are miniscule amounts of protein in nerve cells. Scientists don’t yet really understand why these protein deposits are found in the brain, or how they play a part in dementia.
We do, however, have some knowledge of how they affect us. Having Lewy bodies in the brain is linked to having lower levels of acetylcholine and dopamine – both important chemical messengers. This means that connections between nerve cells are lost, and this causes the ongoing death of nerve cells and a reduction in brain tissue.
Lewy bodies can be found in different parts of the brain, and their location affects the symptoms that develop. Lewy bodies at the base of the brain are linked to difficulties with movement - one of the main symptoms of Parkinson’s disease.
Lewy bodies found in the brain’s outer layers are connected with problems with the brain’s ability to think and process information. This is a typical trait of DLB.
Like other forms of dementia the symptoms of Parkinson’s and DLB become worse with time. And the symptoms of these two conditions become more alike, as they progress.
Symptoms of dementia with Lewy bodies
Dementia with Lewy bodies is different for everyone who has this condition. Each person with DLB will have different sets of symptoms. And the speed at which their condition – and symptoms – progress can vary a great deal from one person to another.
Someone with DLB will usually have some of the symptoms of both Alzheimer’s and Parkinson’s disease.
Other symptoms can include reduced ability to tackle problem solving, memory problems, and unpredictable and quickly changing levels of confusion.
People with DLB can have very varying levels of alertness. They may seem quite aware, and then seem to be staring into space, or are drowsy and almost asleep. These changes can happen every hour or more, or even every few minutes.
DLB can also cause:
- Symptoms similar to Parkinson’s, with slower movements than normal, tremors and stiff muscles.
- Visual hallucinations – often seeing people and/or animals that aren’t there
- Disturbed sleep, which can include them talking and moving
- Being unsteady on their feet, fainting and falling
Diagnosing Dementia with Lewy bodies
In its early stages DLB can be quite difficult to diagnose - the symptoms could be caused by a range of other conditions.
Your GP will be able to carry out some of the tests needed for a diagnosis. Some, however, will have to be carried out by specialists.
You may need to have a brain scan (a computerized tomography (CT) scan, for instance) to check whether your symptoms are being caused by a stroke, for example, or by brain shrinkage. They may also refer you for blood tests and possibly, to a memory clinic.
How dementia with Lewy bodies progresses
DLB, like other types of dementia, is a progressive condition. This means that symptoms become steadily worse over time – and there may be more of them. This will affect memory, and behaviour – being restless and agitated for instance.
In fact with the changes that time brings, and the changes to memory and mental competence, the condition may appear more like the middle to later stages of Azheimer’s disease.
Other changes that will appear as the disease progresses can include more difficulty with movement and walking. Falls are more common at this stage, as are increasing problems with eating and swallowing.
Related: Download our falls prevention guide
Treatment for dementia with Lewy bodies
There are no drugs or other treatments than can cure dementia with Lewy bodies, however there are some treatments that can help, by managing the symptoms, and helping the person with DLB feel calmer.
The first step will be for the experts involved – GP, dementia specialists and social care need experts – to look at the situation and create a care plan tailored to each individual person. This should aim to give the best quality of life for each person. This is important because people who have DLB will all have different problems and different needs.
As time goes by and the disease progresses the professionals involved will need to reassess the person with dementia. This will allow them to update the level of care and possibly re-assess any medications they need.
Drug treatments for dementia with Lewy bodies
There are some drug treatments that may help people with DLB, but they must be used with care, as some may cause unpleasant side effects. Because every person with DLB reacts differently, it is very hard to know how each one is likely to respond to the medication.
Drugs given to help with hallucinations and mental issues may make that person’s movement problems worse. And medication to help with movement problems may make that person’s mental capacity and/or hallucinations worse.
Cholinesterase inhibitor drugs - galantamine, donepezil and rivastigmine - may be of some help in treating some of the symptoms of DLB, such as the highs and lows in mental abilities and alertness. These drugs aren’t, at the moment, licensed for use in people with DLB, so it can depend on your doctor whether or not they are prepared to prescribe them. (There is some evidence that these drugs can help with DLB. Your doctor may be prepared to prescribe one of these drugs outside the terms of the licence – or ‘off label’).
Sometimes antipsychotic drugs may be prescribed to someone with DLB. These are to help with agitation or worrying hallucinations. However, these can have serious and even dangerous side effects, and may increase the risk of death so they are only used in certain cases, and after a great deal of thought.
Clopixil (Clopenthixol), Dolmatil (Sulpiride) and Largactil (Clorpromazine) are some of the antipsychotic drugs available.
Levodopa, which is prescribed for people with Parkinson’s disease, is occasionally also prescribed for people with DLB who have movement problems. However, it doesn’t work as effectively in people with DLB, and can reduce their mental abilities.
Other treatments for dementia with Lewy bodies
There are non-medicinal treatments than can help both the person with DLB and their family and carers. Some of these may be provided free – ask your GP or specialist team whether any services that provide expert help, such as occupational therapy or physiotherapy, are provided through the NHS in your area.
Occupational therapy can help with problems with day to day tasks, such as getting washed and dressed.
An occupational therapist or physiotherapist may also be able to help with mobility, and independence. They will also be able to suggest aids and adaptations to the home that can make life easier for the person with DLB.
Related: How physiotherapy can benefit your health
Speech and language therapy may be able to help if the person with DLB has difficulty speaking or swallowing. Ask whether this is available through your GP.
Memory loss in people who have dementia with Lewy bodies
People who have dementia often have trouble remembering things that happened an hour or a day ago, but can recall their younger days far more clearly. Unfortunately, as their dementia continues to become worse even these memories can become hazy or non-existent.
If you are looking after someone with dementia it can help them recall their past if they have old photographs, letters, books etc. around them, as physical reminders. Research has found that this can help people with dementia feel calmer and more in control. It may be worth playing them music or DVDs of older films that they liked when they were younger.
Listening to them talk about their past can also be rewarding for both of you. Of course it may be that their memories aren’t all happy ones, but it can really help to listen to these too, and talk sympathetically about these events.
Cognitive stimulation therapy for dementia with Lewy bodies
The exercises and activities involved in cognitive stimulation therapy aim to help improve memory and communication skills.
It’s a good idea for people with DLB and other forms of dementia to take part in this form of therapy in an organized, group setting, but they can also do this at home, with carers. Ask your GP or one of the specialist team for more information.
Sleeping problems in people who have dementia with Lewy bodies
This can be disruptive for the person with DLB, their carers and family. Slowly increasing physical exercise, and reducing the amount of daytime napping can help with night-time sleeping. Reducing the amount of stimulation – TV, alcohol, tea and coffee – in the evening can also help. It’s also worth talking to the person’s GP about whether sleeping pills might help and if they are suitable.
Regular routines for people who have dementia with Lewy bodies
Having a regular routine, and keeping household items in the same place, can help people with dementia. It should make it easier for them to remember where things are, if they are always in the same spot, and help reduce their confusion.