Dementia with Lewy bodies

6. Treatment and support

At present, there is no cure for DLB. If the person is able to manage their symptoms, it will help them to live well. Given the range of different types of symptoms, they are likely to need support from a variety of professionals at different times. With correct diagnosis and support from a team of professionals, it is possible to live well with DLB.

When caring for someone with DLB, it is important to be as flexible as possible, bearing in mind that many of the symptoms will vary over time.

Treatment of DLB with drugs is often problematic. This is because everyone responds differently, there is only a small amount of evidence about what works, and there are few approved treatments. Also, medication given to improve hallucinations can make movement problems worse. Similarly, drugs for movement problems may have a negative effect on mental abilities or make hallucinations worse. There are also serious issues for a person with DLB with use of a specific group of medications known as antipsychotic drugs (see 'Hallucinations and delusions' below).

Managing the symptoms of DLB starts by focusing on those that affect the person the most. Where possible, they should be helped to manage these symptoms in ways that don't use drugs (non-drug approaches), before trying drug treatments.

Problems with mental abilities

As in other types of dementia, a person with DLB should be offered non-drug approaches to help them to maintain their mental abilities. Examples of these include social interaction, staying mentally active (cognitive stimulation), developing a structured routine and using practical strategies to live well with memory loss (see our 'Coping with memory loss' factsheet).

There is some evidence that the drugs donepezil and rivastigmine (which are routinely prescribed for Alzheimer's disease) can help with DLB. They improve a person's mental abilities, such as attention and alertness, as well as their ability to do day-to-day tasks. There is less evidence to support use of the related drug galantamine. None of these drugs are currently licensed for use in DLB in Europe, although rivastigmine is licensed for use in Parkinson's disease dementia. For this reason, families may find that doctors are reluctant to prescribe one of these drugs for a person with DLB, though they may do so 'off label' (outside the terms of the licence).

Memantine is a drug often given to people in the later stages of Alzheimer's disease. Some evidence shows that it can also help people with DLB, but not all of the evidence shows this.

Hallucinations and delusions

If someone is having hallucinations or delusions, in most cases it is unhelpful to try to convince them that what they are seeing is not there, or that what they believe is untrue. What the person is experiencing is real to them at the time. Instead, carers can offer reassurance that they are there to support the person, and perhaps try distracting them.

It is important to get any glasses or hearing aids checked. Any problems with these can make difficulties with perceiving things worse. Misperceptions (different from hallucinations) can also be triggered by things in the environment such as excess noise and reflective or patterned surfaces. For more information see our 'Sight, perception and hallucinations in dementia' factsheet.

If hallucinations are distressing or likely to lead to physical harm, drug treatments may be offered. There is evidence that donepezil and rivastigmine (see 'Problems with mental abilities' above) reduce hallucinations and delusions in people with DLB. This treatment is recommended by the National Institute for Health and Care Excellence (NICE) and may be prescribed 'off label'.

However, some drugs may not help and may even harm the person. In particular, the prescription of antipsychotic drugs for hallucinations or delusions in DLB is very problematic. These drugs do not work in everyone and are known to increase the risk of stroke and death in people with dementia.

There is an additional and much greater risk to the use of antipsychotic drugs in people with DLB (in comparison with other types of dementia). Up to half of people taking these drugs have severe reactions, with difficulty moving (including stiffness), becoming more confused, and being unable to perform tasks or communicate. These drugs may even cause sudden death. If someone goes into hospital or sees a new doctor, the person or family should check that medical staff know that the person has DLB and that this diagnosis is clearly recorded in the person's notes.

If a person with DLB must be prescribed an antipsychotic for distressing visual hallucinations or delusions, this should be done only by a specialist after all other approaches have failed. The drug should be given with the utmost care, under constant supervision and with regular monitoring.

Behaviours that challenge

As in other types of dementia, behaviours that are challenging to cope with - for the person and the carer (eg agitation, aggression) - should be seen as a form of communication or a sign of an unmet need.

Carers or professionals should try to identify and meet this need in a way that is tailored to the individual. The cause behind a behaviour may be a medical condition, such as pain, or the side effects of drugs. It may also indicate that the person is frustrated, scared or bored. To manage these, carers should look for specific triggers and try to make appropriate changes in the person's care or environment, such as reducing unnecessary noise and clutter.

This type of behaviour can often be prevented or made better by interaction with other people, or through activities matched to the person's abilities and interests. There is also evidence of benefits from music therapy, physical exercise and hand massage. Life story work or reminiscence can help with low mood. For more information see our 'Changes in behaviour' and Dementia and aggressive behaviour factsheets. 

If behaviours that challenge continue and are severe or distressing, drug treatments may be offered. One of the two Alzheimer's drugs - donepezil or rivastigmine - should be tried first. If this fails and an antipsychotic is finally offered to someone with DLB, it is important to be aware of all the risks of a severe reaction (and need for extreme caution) mentioned above.

Sleep disturbance

Steps can be taken to help a person with DLB have more restful nights. Increasing physical exercise, having a regular bedtime and getting-up time, and reducing daytime napping can all help. It can also help to avoid alcohol, caffeine and nicotine close to bedtime, and to keep the bedroom quiet and at a comfortable temperature.

Practical steps can be taken to make the area around the bed safe - remove sharp objects and put a mattress alongside the bed in case the person falls or jumps out.

Carers should also talk to the GP about sleep problems. Drugs such as clonazepam or melatonin can be effective treatments.

Movement problems

A person with movement problems will often benefit from working with an occupational therapist or physiotherapist. These professionals can help the person to move and stay independent, as well as advise on aids and adaptations in the home. For more information see our 'Using equipment and making adaptations to the hom' factsheet.

If the person has had falls or is worried about falling, the GP may refer them to a falls prevention service. Their risk of falls may be reduced by strength and balance exercises, a sight test, a medication review and making the home safer (eg removing trip hazards).

Support from a speech and language therapist is often helpful if the person develops problems with swallowing or speaking.

The drug levodopa, routinely used to treat Parkinson's disease, is sometimes given to people with DLB and movement problems. Levodopa is, however, less effective in DLB than in Parkinson's disease. It improves movement problems and falls in only around one third of people with DLB. Levodopa can also further increase confusion, reduce mental abilities (eg alertness) or make hallucinations worse.

With correct diagnosis and support from a team of professionals, it is possible to live well with DLB.