Dementia with Lewy bodies can cause both common dementia symptoms like memory loss and confusion, as well as other symptoms, like changes to alertness.

Everyone’s experience of dementia symptoms can be different, but most people have changes to their thinking, memory and behaviour that start to get worse over time.

 

Symptoms of DLB can include:

  • Changes in alertness and attention, and periods of confusion. These periods can be unpredictable and change from hour-to-hour, or day-to-day.
  • Movement problems such as slower movements, stiffness in the arms and legs, and shaking or trembling. These symptoms are also common in Parkinson’s disease.
  • Stability: people can become unsteady when moving around and be at risk of falling over.
  • Visual hallucinations: people with DLB may see things that are not really there, for example people or animals. These hallucinations can happen repeatedly and are very realistic for the person experiencing them.
Des

My condition seems to vary a lot. You draw a conclusion one day and it’s different the next. I feel very tired a lot of the time.
I don't tend to get many hallucinations, but the first one I can recall is that I saw a line of people standing together, but it was actually just our dressing gowns hanging up on the back of the door. Fortunately I’ve not had hallucinations that have been upsetting.

- Des, who lives with dementia with Lewy bodies

  • Changes to thinking and memory: People often notice difficulty making plans, and lose the ability to find their way around. Memory can be affected, but this may occur later and be less severe compared to other types of dementia.
  • Mood: depression and anxiety are commonly seen in DLB but can often be eased with treatment.
  • Sleep problems: vivid dreams and shouting out or moving while asleep. This can disrupt sleep and may cause injury. Poor sleep quality and more daytime sleeping are more common in DLB than other types of dementia.
  • Sense of smell: changes to sense of smell or taste.
Mel Jarman

I know people who had Alzheimer’s, so I know what that looks like. My mum’s dementia was very different. My mum always remembered me, my husband, and her grandchildren. My mum lost all sense of day and night. She once called me late at night asking for a lift – even though it was dark she thought it was morning. She also lost her understanding of things. For example, I asked my mum to unlock her door, but she just couldn’t work out what to do. It wasn’t that she had lost the key, it was that she couldn’t understand what ‘unlocking’ was.

- Mel, whose mum was diagnosed with dementia with Lewy bodies

Below you can hear about what it’s like to live with dementia with Lewy bodies from Des, and his wife Valli.

No two people experience dementia the same. If you are worried about any of the symptoms mentioned on this page, talk to your doctor.

Dementia with Lewy bodies (DLB) and Parkinson’s disease (PD) are progressive diseases. This means that symptoms get worse over time. As the diseases progress, people will need more help with everyday activities like eating, moving, dressing, and using the toilet.

The type of symptoms and the speed at which they change can vary from person to person as DLB or PD progresses. Some research suggests that cognitive decline in people with DLB is more rapid than cognitive decline in those with Alzheimer’s disease or PD.

For more information about Parkinson’s disease you can get in touch with Parkinson’s UK at parkinsons.org.uk or 0808 800 0303

Dementia with Lewy bodies

This booklet is for anyone who wants to know more about dementia with Lewy bodies (DLB). This includes people living with DLB, their carers, families and friends.

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This information was updated in December 2023 and is due to be reviewed in December 2025. It was written by Alzheimer’s Research UK’s Information Services team with input from lay and expert reviewers. Please get in touch if you’d like a version with references or in a different format.

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