Research

Researching drugs for dementia with Lewy bodies and Parkinson’s disease dementia

About one in 10 people with dementia have dementia with Lewy bodies (DLB), where tiny clumps of proteins (known as Lewy bodies) build up in brain cells. 

People with Parkinson’s disease also have Lewy bodies, and around a third of them eventually develop Parkinson’s disease dementia (PDD).

A new trial called COBALT is looking for people with DLB or PDD to see if using two drugs together could help improve their symptoms.

Professor John-Paul Taylor at Newcastle University, COBALT Chief Investigator, says, ‘Despite being the second most common form of late life dementia, DLB and PDD are under-recognised and under-diagnosed, and there have been few large-scale clinical trials to date.’ 

Related and complex 

‘DLB and PDD are related and complex illnesses,’ says Sarah Dunn, COBALT Senior Trial Manager. 

‘Acetylcholinesterase inhibitors (AChEIs) are a type of commonly used medication that can help people with DLB and PDD, by improving their ability to think and day-to-day functioning. 

‘Another drug that might help is memantine, which is used to treat moderate to severe confusion in Alzheimer’s disease, and may help to improve memory, awareness and the ability to perform daily functions. 

‘The aim of the COBALT trial is to find out if adding memantine to their current AChEI treatment improves overall health and functioning for people with DLB or PDD.’

Two in one 

Sarah notes how COBALT is essentially two separate trials in one. 

‘Previous research into memantine has looked at both DLB and PDD together,’ she says, ‘but as there can be differences between these two types of dementia, we think that it’s important to look at them separately. 

‘Another unique element of the COBALT trial is that it is also being carried out in Australia. 

The information collected from Australian participants will be looked at together with the information we gather from participants in the UK.

Like all research trials, COBALT relies on people volunteering to take part. 

‘We are currently in the recruitment phase of the COBALT trial,’ says Sarah.

‘To date we have recruited 77 participants with DLB and PDD, the aim being to recruit 300 overall.’

Participants take either the study drugs or a placebo (a ‘dummy drug’) for a year, with three visits during that time at a local research hospital or at home.

Vital involvement 

‘Conducting research – in particular clinical trials – in dementia is difficult,’ says John-Paul. ‘However the rewards are potentially enormous, given how few treatments there are at present. 

We are beginning to see a wave of clinical trial activity with new potentially exciting treatments being tested for dementia. 

‘Vital to this will be involving people living with dementia and their families so they can be fully part of this.’ 

Angela Holland, Senior Research Nurse at Devon Partnership NHS Trust, says, ‘We want to ensure that we are offering our patients as many opportunities as possible to participate in dementia trials that will help to improve patient care and inform treatment guidelines. 

‘COBALT has the potential to help understand and improve the treatment pathway for people with DLB and PDD.’ 

Katy Seedhouse and Sarah Edgar at Sussex Partnership NHS Foundation Trust agree. 

‘It has felt really positive to be part of a research study,’ says Katy, Clinical Research Co-ordinator. 

‘I have seen the impact that these types of dementia can have,' adds Sarah, Clinical Research Nurse, ‘and I’m delighted to work towards finding new treatments that can be offered to help people living with these conditions.’