What are the symptoms of Lewy body dementia?

Each case of Lewy body dementia is as individual as the person living with it. The symptoms are complex and not everyone will experience all of the symptoms we have listed or develop them at the same time.

Please note: this should not be a substitute for medical advice. The Lewy body Society urges anyone concerned about Lewy body dementia to contact their doctor

How is Lewy body dementia diagnosed?

A GP should refer on to a memory or dementia service and/or a movement disorder/Parkinson’s service or a neurologist. This may depend on which symptoms appear first.                                                               

The person’s physical health will be assessed and they and a family member, if possible, will be asked about symptoms such as:

  • difficulties with memory
  • their ability to carry out their usual activities
  • changes in behaviour and mood
  • changes in alertness

There may blood tests to rule out other conditions and brain scans to detect signs of dementia.

Careful clinical evaluation of symptoms forms the basis for making a reasonably confident diagnosis. However, Lewy body dementia can only be confirmed after death.

Lewy body dementia symptoms

If you, or someone you know, have any of the following combinations of symptoms, you may have Lewy body dementia and should seek medical advice:

Core symptoms

  • Fluctuating states of consciousness
  • Visual hallucinations
  • Spontaneous Parkinsonism
  • Disturbances in Rapid Eye Movement sleep

Suggestive symptoms

  • Severe sensitivity to neuroleptic drugs

Supportive symptoms: These may assist in a diagnosis of DLB but are not conclusive.

  • Fainting
  • Falls
  • Problems with swallowing or continence
  • Delusions
  • Depression
  • Other hallucinations (hearing, smelling or feeling things)

See Symptoms and Treatments FAQ for more details.

A diagnosis of Lewy body dementia is less likely if the person has had a stroke or other illness which may have affected motor or mental ability.

Progressive mental decline that interferes with normal daily activities. Significant memory loss may not develop until later. There may also be problems with attention, problem solving and spatial awareness.

The symptoms include:

  • changes in alertness – people may stare into space for periods, seem drowsy and sleep a lot, affects 90% of people with LBD
  • recurring visual hallucinations – usually people or animals, they may cause distress – affects 75% of people with LBD
  • disturbed sleep – rapid eye movement (REM) sleep disorder causing restlessness and nightmares – affects 75% of people with LBD
  • difficulty with planning or carrying out everyday tasks, such as using money, phones or household appliances
  • difficulty with remembering events or names
  • difficulty walking, shuffling, appearing rigid, ‘freezing’
  • tremors – usually in the hands
  • problems with balance and being prone to falls

Physical symptoms can include (although will not be experienced by everyone):

  • tremors – usually in the hands
  • shuffling, rigidity, ‘freezing’, slow movement
  • masked expression
  • prone to falls
  • orthostatic or postural hypotension: low blood pressure on standing up
  • bladder sensitivity – particularly at night
  • constipation
  • impaired sense of smell
  • increased salivation
  • excessive sweating
  • muscle cramps
  • restless legs
  • swallowing – less frequent, poor swallow reflex
  • racing heart
  • less fluent speech and quieter volume

Psychological symptoms can include (although will not be experienced by everyone):

  • delusions – a false belief, sometimes linked to hallucinations – such as feeling someone is watching them. Some experience Capgras syndrome, where they believe that a loved one has been replaced by an imposter.
  • depression – can result in poor sleep and appetite and loss of interest in activities
  • apathy – this can occur independently of depression
  • anxiety – can result in a racing heart, sweating and panic attacks

No, not present but the Lewy Body Society is working tirelessly towards better, awareness, diagnosis and treatment until a cure is discovered.

Lewy body dementia symptoms are managed by both pharmaceutical and non-medical interventions.

Find out more

We have a library of downloadable leaflets with expert advice to help you understand all aspects of life with Lewy body dementia