Dementia With Lewy Bodies

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Introduction

Dementia with Lewy bodies

Dementia with Lewy bodies (DLB), also known as Lewy body dementia, is a common type of dementia estimated to affect more than 100,000 people in the UK.

"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.

This page covers:

Symptoms

Getting medical advice

Tests and diagnosis

Treatments

Outlook

Causes

Symptoms of dementia with Lewy bodies

People with dementia with Lewy bodies may have:

  • 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
  • periods of fluctuating alertness alternating with periods of confusion or sleepiness - this can change over hours or days
  • slow movement, stiff limbs and tremors (uncontrollable shaking)
  • hallucinations (usually seeing or sometimes hearing things that aren't there)
  • 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.

Read more about the symptoms of dementia with Lewy bodies.

Getting medical advice

See your 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 their GP and perhaps suggest that you go with them.

Your 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.

Read more about getting a dementia diagnosis.

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 single photon-emission computed tomography (SPECT) dopamine transporter scan - these can detect signs of dementia or other problems with the brain

Read more about the tests used to diagnose dementia.

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 cafés (drop-in sessions for people with memory problems and their carers to get support and advice)

Read more about how dementia with Lewy bodies is treated

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 6-12 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

Symptoms

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:

  • marked swings between alertness and confusion or sleepiness - this can happen unexpectedly and change over hours or days
  • slow movement, stiff limbs, tremors (uncontrollable shaking) and shuffling when walking - similar to Parkinson's disease
  • seeing or sometimes hearing things that aren't there (hallucinations) - these can range from pleasant to distressing
  • 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 your 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 their GP and perhaps suggest that you go with them.

Your 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.

Read more about:

Getting a dementia diagnosis

Tests used to diagnose dementia

Advice if you're worried someone else could have dementia


Treatment

Treatment

There's currently no cure for dementia with Lewy bodies, but there are treatments that can help manage the symptoms.

Care plans

Medication

Support and other therapies

End of life and legal issues

Help and advice for carers

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

Read more about care plans.

Medication

Medication can't stop dementia with Lewy bodies getting worse, but for some people it can help reduce some of the symptoms.

Acetylcholinesterase inhibitors

Acetylcholinesterase 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.

Other medications

Other medications that may help control some of the 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 your doctor
  • antidepressants - these may help you cope if you're depressed 
  • clonazepam - this can sometimes help if you experience a particular type of disturbed sleep called rapid eye movement (REM) sleep behaviour disorder
  • antipsychotics (such as haloperidol) - these may help with severely challenging 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 medication, there are a number of therapies and practical measures that can help make everyday living easier for someone with dementia.

These include:

  • occupational therapy to identify problem areas in everyday life, such as getting dressed, and help work out practical solutions
  • speech and language therapy to help improve any communication or swallowing problems
  • physiotherapy to help with movement difficulties
  • 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 cafés (drop-in sessions for people with memory problems and their carers to get support and advice)
  • home modifications, such as removing loose carpets and potential trip hazards, ensuring the home is well lit, and adding grab bars and handrails

It may also be helpful to get in touch with a support group, such as The Lewy Body Society, the Alzheimer's Society or Dementia UK.

Read more about living well with dementia.

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 - this 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 - this is the power to make decisions about you if you're unable to

Read more about managing legal affairs for someone with dementia and end of life planning.

Help and advice for carers

If you care for someone with dementia, you may find it helpful to read more about:

Looking after someone with dementia

Respite care - this can allow you to take breaks from caring

Benefits for carers - such as allowances and tax credits that may be available