Symptoms of dementia with Lewy bodies (DLB)

Symptoms of DLB include having difficulties staying focused, experiencing delusions, and having problems with movement and sleep. 

How does dementia with Lewy bodies affect people?

The way someone is affected by DLB will depend partly on where the Lewy bodies are in the brain:

  • Lewy bodies at the base of the brain are closely linked to problems with movement. These are the main feature of Parkinson’s disease.
  • Lewy bodies in the outer layers of the brain are linked to problems with mental abilities, which is a feature of DLB and other types of dementia.

When DLB starts to affect someone, early symptoms may not cause too many difficulties. Gradually though, these get worse and cause problems with everyday living. 

What are the symptoms of dementia with Lewy bodies?

Everyone experiences dementia differently. Both DLB and Alzheimer’s disease can cause:

  • problems with staying focused
  • difficulties with making decisions
  • memory loss
  • problems with the way the person sees things around them.
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However, DLB also causes symptoms that are not usually seen in Alzheimer's disease. These include:

  • hallucinations
  • problems staying fully awake
  • difficulties with movement  
  • very disturbed sleep.

Click on the plus icons to read more about the most common symptoms of DLB.

Problems with attention and mental abilities are very common symptoms in dementia with Lewy bodies. For example, a person with DLB may:

  • become confused and what they say may not make sense. These problems are likely to vary a lot throughout the day, from hour to hour or even over the course of a few minutes.
  • have difficulty staying alert during the day. They may become less aware of what’s going on around them and appear to ‘switch off’.
  • struggle judging distances and seeing objects clearly in three dimensions. This is because the brain makes links with other information to make sense of what we see. For example, the person may not be able to recognise the edge of a step on the stairs and know to change how they approach this.
  • have difficulty with planning, organising and making decisions.
  • face day-to-day memory problems. This often affects people with DLB, but usually much less than in the early stages of Alzheimer’s disease, where it is the main feature.
  • experience depression, anxiety or apathy. This happens for some people with DLB.

A common early symptom for people with DLB is visual hallucinations (seeing things that are not there). The person might describe seeing people or animals. For some people this is disturbing.

Hallucinations in other senses – such as hearing, smell, or touch – can also happen in DLB, although these are less common.

Visual hallucinations are one of the reasons why a person with DLB may stop driving because it is no longer safe. 

Most people with DLB also have delusions (persistently thinking things that are not true) at some stage. 

Up to two-thirds of people with DLB have movement difficulties when they are diagnosed, and this increases as DLB progresses. The movement-related symptoms of DLB are similar to those of Parkinson’s disease. These include:

  • slow and stiff movement of limbs
  • limited facial expressions
  • posture becoming more and more stooped
  • shuffled walking
  • difficulty with balance
  • trembling limbs.

This, combined with difficulty seeing objects properly, can make it likely for people living with DLB to fall and get hurt. 

Not sleeping well is a common symptom of DLB and can start many years before a person is diagnosed.

They may fall asleep very easily during the day, but then have restless, disturbed nights. If the person has rapid eye movement (REM) sleep behaviour disorder, they may physically act out their dreams. This kind of very disturbed sleep is a feature of DLB (and Parkinson’s). 

DLB affects the body in many ways that don’t relate to either dementia or movement. These can include the things we do automatically but don’t usually think about. For example, DLB can cause problems with:

  • constipation
  • problems passing urine – for example, needing to pee very often or in a hurry, or not being able to stop it coming
  • erectile dysfunction (not being able to get or keep a firm erection)
  • losing some sense of smell or taste (or both)
  • low blood pressure when standing up – this can cause dizziness and fainting.

Symptoms in the later stages of dementia with Lewy bodies (DLB)

DLB generally progresses over a period of several years. In the later stages of the disease, the person may:

  • start to have more problems with their day-to-day memory
  • become much more easily upset or distressed, resulting in agitation, restlessness, or shouting out
  • walk more slowly and less steadily, causing a higher risk of falling and serious injury
  • have speech and swallowing problems that may lead to chest infections or a risk of choking
  • have problems with eating and drinking – chewing and swallowing may become more difficult, and the person’s stomach and gut may not move food around the body properly, leading to a loss of appetite as well as nausea and discomfort.
Treatment and support for dementia with Lewy bodies

There is currently no cure for DLB, but there are both drug and non-drug treatments that can support the person to live well. 

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