Dementia with Lewy bodies affects over 100,000 people in the UK, however it is difficult to recognise in clinical practice, with many cases currently undetected. It can also be difficult to distinguish Dementia with Lewy bodies from Alzheimer’s disease.


Signs and symptoms

People with dementia with Lewy bodies not only experience problems with memory and judgement, like those with Alzheimer’s disease, but are also likely to have difficulties with concentration and visual perception (recognising objects and making judgements about where they are in space).

They may experience:

  • slowed movement, stiff limbs, and tremors
  • recurrent visual hallucinations (seeing things that aren’t there)
  • sleep disturbances, including sleepiness during the day
  • fainting, unsteadiness, and falls


Read more about the symptoms of dementia with Lewy bodies.

Source: NHS Choices

We look at some of the studies that are currently recruiting people with dementia with Lewy bodies on Join Dementia Research.

two people discussingThe Clinical Biomarkers for Dementia study is aiming to identify connections between blood changes and the changes seen in everyday living for people with dementia with Lewy bodies. Instead of investigating brain cells in people with dementia (of which there is no current, safe way), the research team hope to find ways of detecting dementia change with simple blood tests, especially looking for markers of inflammation. The research is carried out in the participant’s home, where the participant will be asked to complete some memory tests and questionnaires and a blood sample is taken.

The Systemic inflammation in Dementia with Lewy Bodies and Alzheimer’s Disease (SILAD) study is looking to find out whether the immune system is altered in dementia with Lewy bodies compared to Alzheimer’s disease and healthy volunteers. If a difference is found, diagnostic accuracy may be able to be improved and also potentially help new treatments for dementia with Lewy bodies be developed that dampen down a potentially overactive immune response to the condition.

Amyloid is an abnormal protein that forms small clusters called plaques in the brain. It is found particularly in people with Alzheimer’s disease. Until recently, it has been impossible to measure amyloid in the brain prior to examination of autopsy material. Now, however, PET scans can be used to image the distribution of the protein in living people. These techniques have so far been focused on Alzheimer’s disease, however there is some evidence to show that amyloid can also be present in people with Dementia with Lewy bodies. The Amyloid Imaging for Phenotyping Lewy body Dementia (AMPLE) study is therefore applying the PET scan imaging techniques to the study of Dementia with Lewy bodies. The aim of is to investigate the distribution of amyloid in the brains of people with Dementia with Lewy bodies, and compare it to those with Alzheimer’s disease, as well as people without memory problems. The researchers anticipate finding that amyloid will be present in some people with Dementia with Lewy bodies, and that people with more amyloid will have more symptoms of memory problems.

ParkiPound Hill Surgerynson’s is a common condition that causes problems with movement. Sometimes people with Parkinson’s can also experience memory and concentration difficulties alongside their movement problems. People with dementia with Lewy bodies also experience memory and movement problems. The Living Well with Memory Difficulties in Parkinsonism study aims to assess whether certain non-drug therapies can benefit people with Parkinson’s or dementia with Lewy bodies who are also experiencing memory or concentration difficulties.

Other studies recruiting people with dementia with Lewy bodies include the AC-DC study, the first treatment study aimed at reducing hallucinations, the MIDAS study, using a heart scanning technique to determine whether the functioning of the nerves that supply the heart in people with dementia with Lewy bodies differ from their functioning in people with Alzheimer’s disease, and the dementia with Lewy bodies arm of the NIMROD study, addressing whether inflammation of the brain may be an important factor which could then be targeted to treat and even prevent diseases such as Alzheimer’s as well as to differentiate between different forms of dementia.

Martin-In-GardenYou can see if you are eligible for any of these studies – and others around the nation by logging into your Join Dementia Research account. If you haven’t yet registered with Join Dementia Research, why not sign up today?