Treatments and support for dementia with Lewy bodies (DLB)

There is currently no cure for DLB. The person’s care and treatment should support them to live as well as possible. This should include drug and non-drug treatments.

Support after a diagnosis of dementia with Lewy bodies

After a diagnosis of DLB, both the person and their carer will need support. There are many ways to help someone to live well with DLB that don’t involve drugs. These include information, advice, support, therapies and activities.

It may help to talk things over with a professional first. This should give everyone the chance to ask questions about the diagnosis and think about the future.

This could include getting information on planning ahead, where to get help and how to stay well, both physically and mentally. 

The GP, memory service or Alzheimer’s Society are good places to start for more information on what is available.

Non-drug treatments for dementia with Lewy bodies

Click on the plus icons below to read about non-drug treatments for particular symptoms of DLB.

Ways to improve and maintain general wellbeing, mental abilities and  mood include:

  • social interaction with friends or family, or a local group. Try video calls to stay in touch
  • keeping a routine
  • talking therapies, such as counselling, which can help someone come to terms with their diagnosis or discuss their feelings
  • cognitive behavioural therapy (CBT), which may be offered if the person develops depression or anxiety
  • cognitive stimulation therapy, a popular way to help keep the mind active. It involves doing themed activity sessions over several weeks
  • cognitive rehabilitation, in which a person is helped to retain skills and cope better
  • adaptations in the home to help the person with DLB to remain independent and safe
  • life story work, in which the person is encouraged to share their life experiences and memories
  • reminiscence work, usually enjoyed as a person’s dementia progresses
  • music, singing or art.

It is vital that people with DLB stay as active as they can – physically, mentally and socially. Taking part in meaningful activities is enjoyable and leads to increased confidence and self-esteem.

DLB can sometimes cause a person to become agitated and distressed. This may be because:

  • they are having hallucinations or delusions
  • they are very tired and emotional (from sleep problems)
  • they may be struggling to understand what is going on around them.

Positive interactions with other people, or activities matched to the person’s abilities and interests, can help. For example, they may benefit from music therapy, physical exercise and hand massage.

Any physical health problem – such as dehydration, an infection or constipation – can cause someone with DLB to become more confused and disorientated. 

The person may also have an unmet need that they are struggling to understand or communicate to others, such as being in pain or discomfort. Improving communication can help to meet some of the person's needs.

If the person is in pain or uncomfortable due to a physical problem that hasn't been addressed, this can cause changes in their behaviour. For example, they may:

  • become restless
  • engage in repetitive or obsessive behaviour
  • shout
  • lash out in frustration or become violent. 

There are ways to reduce these challenging behaviours. It is important that everyone supporting the person with dementia, and the person themselves, are safe from harm. It can be hard to know how to respond to aggression, but there are ways to manage it and prevent it from happening in future.

If someone is having visual hallucinations or delusions, it is unhelpful to try to convince them that what they are seeing is not there, or that what they believe is untrue.

There are ways to support a person who is experiencing changes in perception. Carers can offer them reassurance, remind them that they are there to support the person, and try gently distracting them.

Hallucinations that are not distressing to the person may not need to be stopped. Some may even be comforting, such as the sight of a friend or family member sitting by the bed.

It is important to get a person’s eyesight and hearing checked regularly. Support them to keep their glasses or hearing aids clean and working properly. Problems with these can make difficulties with seeing or sensing things worse.

A person with movement problems will often benefit from support from an occupational therapist or physiotherapist. They can help the person to move and stay independent, as well as advise on aids and adaptations in the home.

A speech and language therapist is often helpful if the person develops problems with swallowing or speaking. The GP or community nurse can make a referral.

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, an eyesight test or a medication review. 

It is also a good idea to make their home safer and more dementia-friendly, where possible. This could include improving light levels, decluttering and removing trip hazards.

A lack of good quality sleep is one of the most difficult problems for a person with DLB. It can make other aspects of the condition much harder to cope with.

There are ways to help have more restful nights:

  • Increase levels of physical activity during the day.
  • Have a regular bedtime and getting-up time.
  • Reduce daytime napping.
  • Avoid alcohol, caffeine and nicotine close to bedtime.
  • Keep the bedroom quiet, well-ventilated and at a comfortable temperature – cool but not cold.

Because some people with DLB act out their dreams, they may move their limbs violently and accidentally injure themselves or a partner.  Some partners sleep in separate beds.

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 in  their sleep.

Drug treatments for dementia with Lewy bodies

There are drugs available to help treat the symptoms of DLB, but these must be taken with caution. 

Before trying drug treatments

Treatment of DLB symptoms with drugs often takes some trial and error to get right. This is because everyone responds differently to medication, and there is not much evidence about what works well.

Drugs for improving movement may worsen mental abilities and can make hallucinations worse. There can also be serious risks for a person with DLB if they are treated with medications known as ‘antipsychotics’.

If a person goes into hospital or sees a new doctor, the person or their family should check that medical staff know that the person has DLB (not just ‘dementia’). This diagnosis should be clearly recorded in the person’s notes.

This is important because people with DLB can have a serious reaction to antipsychotic medication that is usually safe for people with other types of dementia to take.

Click on the plus icons below to read about drug treatments for particular symptoms of DLB.

Some drugs can help to manage symptoms for a while. These drugs may help some people with DLB improve their attention and alertness, as well as help with problems such as thinking more slowly. They are:

  • donepezil 
  • rivastigmine – which can also be given as a patch on the person’s skin 
  • memantine – often in addition to donepezil or rivastigmine.

Rivastigmine and, less often, donepezil may also reduce hallucinations and delusions in people with DLB.

It is recommended that a person keeps taking these drugs throughout their dementia if they seem to be helping.

However, some people may find that these drugs don’t work for them, or their side effects are not worth the small benefits. If so, they should tell their doctor – he or she may suggest switching to another drug or focusing more on non-drug approaches.

Antipsychotic drugs are sometimes prescribed for hallucinations or delusions in DLB. However, they can have dangerous side effects and rarely benefit people with dementia.

For this reason, they should not be given to a person with DLB unless there is an immediate risk of harm to the person or those around them, or if the person is in distress. Non-drug approaches should also have been tried before antipsychotic drugs.

These drugs should be given in very small doses by a specialist, and the person must be monitored closely for problems while they are taking them. They should be taken off the drug as soon as possible.

Up to half of the people taking these drugs have severe reactions, with difficulty moving (including stiffness), becoming more confused, and being unable to perform tasks or communicate. They also significantly increase the risk of the person having a stroke or dying suddenly.

A person with DLB should talk to their GP about sleep problems. Drugs such as melatonin or clonazepam can be effective short-term drug treatments for some sleep problems. Melatonin may need to be taken for longer periods if the person has REM sleep behaviour disorder. Clonazepam may worsen the person’s mental abilities and alertness and so tends to be used only for shorter periods. 

The drug levodopa, used to treat Parkinson’s disease, is sometimes given to people with DLB who have movement problems. Levodopa is less effective in DLB than in Parkinson’s disease. It improves falls and movement problems in around one-third of people with DLB.

Levodopa can also increase confusion, reduce mental abilities such as alertness and attention, or make hallucinations worse.

Support in the later stages of DLB

Eventually, someone with DLB is likely to need a large amount of personal care. It is difficult to predict how quickly the condition will progress over time. The person will also need personal care sooner if they have other health conditions that affect their ability to function on their own.

Planning for end of life is important for anyone who has a life-limiting condition, such as DLB. It can be upsetting to think about, but planning ahead can help to meet the person’s needs at the end of their life.

The later stages of dementia

The later stages of dementia can be a challenging time both for the person experiencing dementia and for those close to them. 

Read more
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