In the final of our blog series looking at rarer forms of dementia, we examine what research is happening for dementia with Lewy bodies.
What is dementia with Lewy bodies and what are the symptoms?
Lewy bodies are spherical clumps of a protein called alpha-synuclein, which are deposited in nerve cells. Researchers don’t have a full understanding of why Lewy bodies appear, or exactly how they contribute to dementia.
Dementia with Lewy bodies is believed to affect about 10-15% of people with dementia, although makes up only about 4% of diagnoses.
Misdiagnosis is thought to be quite common. Often dementia with Lewy bodies is mistaken for Alzheimer’s disease as the symptoms are similar. Lewy bodies also appear in people with Parkinson’s disease – again, the two conditions can have overlapping symptoms.
Symptoms are varied but can include trouble with staying awake or paying attention, having detailed hallucinations or delusions and disturbed sleep. People with dementia with Lewy bodies tend to experience ‘fluctuations’ in their memory and thinking abilities, which means that they can get better then worse, often several times a day.
Movement problems such as trembling limbs or having a shuffling way of walking are also common.
Focus on symptoms in research
In 2014, Alzheimer’s Society established eight Doctoral Training Centres across the country to boost the number of PhD students and researchers working on dementia.
Our centre in Newcastle is focused on understanding more about the symptoms of dementia with Lewy bodies that are not related to memory and thinking. This includes investigating what causes fluctuations, understanding why people with dementia with Lewy bodies are more likely to experience depression and examining how the condition affects the ability to walk.
Professor Alan Thomas is leading the Doctoral Training Centre in Newcastle. He said:
‘Dementia with Lewy bodies is an under-recognised and under-diagnosed condition. It can cause a range of symptoms that can be distressing for the person affected and their carers and families and so it is vital that people affected are able to receive the correct support and treatments.
‘Our work will help understand and manage some of the symptoms of dementia with Lewy bodies and improving diagnosis.’
Alzheimer’s Society funded researchers are using innovative techniques to better diagnose dementia with Lewy bodies.
As well as damaging nerve cells in the brain, dementia with Lewy bodies can affect the nerve cells in the heart. Using this knowledge, Gemma Roberts at the University of Newcastle is using her background in medical physics to improve scans of both the brain and heart to improve diagnosis.
To do this, she’s injecting simple things, like cylinders, with radioactive tracers that will show up on scanners. This is so she can make sure it is working correctly. She will then move onto more realistic physical models, until finally trying it in people.
Using large sets of medical data, other researchers are turning detective to spot early signs and clues of dementia with Lewy bodies. When people go to the doctor, their symptoms should be recorded in an electronic database. This data is made anonymous and then researchers are able to access it.
Professor John O’Brien and his team at the University of Cambridge are one group of researchers who are using large medical databases. They want to understand whether early symptoms recorded before a diagnosis could indicate someone was actually in the early stages of dementia with Lewy bodies. This will help researchers and doctors to understand what do look for and alert them sooner to the possibility of dementia with Lewy bodies.
Finding specific treatments
Focusing on the early symptoms will help us give the appropriate treatment and support. This is important because some of the anti-psychotic drugs given to people with Alzheimer’s disease could be harmful to people with dementia with Lewy bodies.
There are currently no treatments that specifically work for people with dementia with Lewy bodies, although some doctors might prescribe treatments for Alzheimer’s such as donepezil and rivastigmine ‘off-label’ to help with certain symptoms.
Understanding early symptoms and improving diagnosis will also help with clinical trials. People can enrol in appropriate clinical trials that are developing specific treatments for people with the condition.
Find out more about dementia with Lewy bodies in our factsheet.