Dementia with Lewy bodies (DLB), also known as Lewy body dementia, is one of the most common types of dementia.
Dementia is the name for problems with mental abilities caused by gradual changes and damage in the brain. It's rare in people under 65.
It tends to develop slowly and get gradually worse over several years.
e with dementia with Lewy bodies may have:
- hallucinations – seeing, hearing or smelling things that are not there
- problems with understanding, thinking, memory and judgement – this is similar to Alzheimer's disease, although memory may be less affected in people with dementia with Lewy bodies
- confusion or sleepiness – this can change over minutes or hours
- slow movement, stiff limbs and tremors (uncontrollable shaking)
- disturbed sleep, often with violent movements and shouting out
- fainting spells, unsteadiness and falls
These problems can make daily activities increasingly difficult and someone with the condition may eventually be unable to look after themselves.
Getting medical advice
See a GP if you think you have early symptoms of dementia, especially if you're over 65 years of age.
If you're worried about someone else, encourage them to make an appointment with a GP and perhaps suggest that you go with them.
The GP can do some simple checks to try to find the cause of your symptoms and they can refer you to a memory clinic or another specialist for further tests if needed.
Tests for dementia with Lewy bodies
There's no single test for dementia with Lewy bodies.
The following may be needed to make a diagnosis:
- an assessment of symptoms – for example, whether there are typical symptoms of dementia with Lewy bodies
- an assessment of mental abilities – this will usually involve a number of tasks and questions
- blood tests to rule out conditions with similar symptoms
- brain scans, such as an MRI scan, CT scan or a SPECT scan – these can detect signs of dementia or other problems with the brain
Treatments for dementia with Lewy bodies
There's currently no cure for dementia with Lewy bodies or any treatment that will slow it down.
But there are treatments that can help control some of the symptoms, possibly for several years.
Treatments include:
- medicines to reduce hallucinations, confusion, drowsiness, movement problems and disturbed sleep
- therapies such as physiotherapy, occupational therapy and speech and language therapy for problems with movement, everyday tasks, and communication
- psychological therapies, such as cognitive stimulation (activities and exercises designed to improve memory, problem solving skills and language ability)
- dementia activities, such as memory cafes (drop-in sessions for people with memory problems and their carers to get support and advice)
Outlook for dementia with Lewy bodies
How quickly dementia with Lewy bodies gets worse varies from person to person.
Home-based help will usually be needed, and some people will eventually need care in a nursing home.
The average survival time after diagnosis is similar to that of Alzheimer's disease – around 6 to 12 years. But this is highly variable and some people live much longer than this.
If you or a loved one has been diagnosed with dementia, remember that you're not alone. The NHS and social services, as well as voluntary organisations, can provide advice and support for you and your family.
Causes of dementia with Lewy bodies
Dementia with Lewy bodies is caused by clumps of protein forming inside brain cells. These abnormal deposits are called Lewy bodies.
These deposits are also found in people with Parkinson's disease, and they build up in areas of the brain responsible for functions such as thinking, visual perception and muscle movement.
It's not clear why the deposits develop and how exactly they damage the brain. It's thought that part of the problem is the proteins affecting the brain's normal functions by interfering with signals sent between brain cells.
Dementia with Lewy bodies usually occurs in people with no family history of the condition, although there have been very rare cases that seem to run in families.
Symptoms-Dementia with Lewy bodies
Dementia with Lewy bodies (DLB) causes problems with mental abilities and a number of other difficulties.
The symptoms tend to come on gradually and get slowly worse over several years, although treatment can help.
Problems with mental abilities
As with other types of dementia, dementia with Lewy bodies typically causes problems with:
- thinking speed
- understanding
- judgement
- visual perception
- language
- memory (but significant memory loss may not occur until later on)
These problems may be constant but typically tend to come and go.
Other symptoms
There are also other symptoms of dementia with Lewy bodies that can help distinguish it from other types of dementia, such as:
- seeing or sometimes hearing things that are not there (hallucinations) – these can range from pleasant to distressing
- marked swings between alertness and confusion or sleepiness – this can happen unexpectedly and change over minutes or hours
- slow movement, stiff limbs, tremors (uncontrollable shaking) and shuffling when walking – similar to Parkinson's disease
- fainting, unsteadiness and falls
- disturbed sleep – this could be talking in sleep, acting out dreams or sleepiness during the day
- difficulty swallowing
- depression
Daily activities become increasingly difficult and there may be further health problems, such as an injury after a fall or a chest infection caused by accidentally inhaling food.
Getting medical advice
See a GP if you think you have early symptoms of dementia, especially if you're over 65 years of age.
If you're worried about someone else, encourage them to make an appointment with a GP and perhaps suggest that you go with them.
The GP can do some simple checks to try to find out the cause of your symptoms and may refer you to a specialist for further tests.
Treatment-Dementia with Lewy bodies
There's currently no cure for dementia with Lewy bodies, but there are treatments that can help manage the symptoms.
Care plans
Before treatment starts, your current and future health and social care needs will be assessed and a care plan drawn up.
This is a way of ensuring you receive the right treatment for your needs. It involves identifying areas where you may need some assistance, such as:
- what support you or your carer need for you to remain as independent as possible, including whether you might need care at home or in a nursing home
- whether there are any changes that need to be made to your home to make it easier to live in
- whether you need any financial assistance
Medicine
Medicine cannot stop dementia with Lewy bodies getting worse, but for some people it can help reduce some of the symptoms.
Acetylcholinesterase inhibitors
Acetylcholinesterase (AChE) inhibitors, such as donepezil (Aricept), rivastigmine (Exelon) and galantamine (Reminyl), may help improve hallucinations, confusion and sleepiness in some people.
These work by increasing levels of a chemical called acetylcholine in the brain, which improves the ability of the brain cells to send signals to each other.
Common side effects include feeling and being sick, diarrhoea, headaches, tiredness and muscle cramps.
Memantine
This medicine is not an AChE inhibitor. It works by blocking the effects of a large amount of a chemical in the brain called glutamate.
Memantine is used for moderate or severe dementia with Lewy bodies. It's suitable for those who cannot take AChE inhibitors.
Side effects can include headaches, dizziness and constipation, but these are usually only temporary.
For more information about the possible side effects of your specific medicine, read the patient information leaflet that comes with it and speak to a doctor.
Other medicines
Other medicines that may help control some symptoms of dementia with Lewy bodies include:
- levodopa – this can help with movement problems, but it can also worsen other symptoms and needs to be carefully monitored by a doctor
- antidepressants – these may be given if you're depressed
- clonazepam – this can help if you experience a particular type of rapid eye movement (REM) sleep behaviour disorder
- antipsychotics (such as haloperidol) – these may help with behaviour that's putting you or others at risk of harm, but they can cause serious side effects and should be avoided whenever possible
Support and other therapies
In addition to medicine, there are a number of therapies and practical measures that can help make life easier for someone with dementia.
These include:
- occupational therapy to identify problem areas in everyday life, such as getting dressed, and help make life easier
- speech and language therapy to help improve communication or swallowing problems
- physiotherapy to help with movement
- psychological therapies, such as cognitive stimulation (activities and exercises designed to improve memory, problem solving skills and language ability)
- relaxation techniques, such as massage, and music or dance therapy
- social interaction, leisure activities and other dementia activities, such as memory cafes (drop-in sessions for people with memory problems and their carers to get support and advice)
- home modifications, such as removing trip hazards, ensuring the home is well lit, and adding grab bars and handrails
It may be helpful to get in touch with a support group, such as The Lewy Body Society, the Alzheimer's Society or Dementia UK.
End of life and legal issues
If you've been diagnosed with dementia, you might want to make arrangements for your care that take into account the decline in your mental abilities.
This may include ensuring that your wishes are upheld if you're not able to make decisions for yourself.
You may want to consider:
- drawing up an advance decision, which makes your treatment preferences known in case you're unable to do this in the future
- having a plan for where you want to receive treatment as your condition becomes more advanced
- giving a relative lasting power of attorney, enabling them to make decisions about you if you're unable to.