Experts call for greater recognition of little-known forms of dementia

Leading experts today called for the UK government’s dementia strategy to recognise two common but little-known forms of the condition.

Most people with Parkinson’s disease will eventually develop dementia, and dementia with Lewy bodies affects at least one in ten of all people with dementia (around 100000 people in the UK).  Dementia with Lewy Bodies is the second most common form of age-related dementia after Alzheimer’s disease, and was implicated in the death of actor Robin Williams in 2014. 

Both conditions can involve visual hallucinations and specific problems with movement.  Symptoms often fluctuate, making them difficult for patients, carers and medical professionals to identify and manage.  While the causes of Lewy Bodies and Parkinson’s dementia are still poorly understood, they involve different mechanisms to Alzheimer’s disease.

The lack of awareness of these conditions means that Lewy Bodies and Parkinson’s dementia are frequently misdiagnosed, and patients are often inappropriately prescribed antipsychotic drugs to treat their hallucinations.  These can lead to unwanted side-effects, and in some cases can worsen their condition.  Even when a correct diagnosis is made, there are currently few treatment options available, and diagnosis is often made too late for existing drugs to be effective.

According to Professor Dag Aarsland, Chair of Old Age Psychiatry at King’s College London, “Despite the fact that they are common conditions, Lewy Bodies and Parkinson’s dementia are desperately under-researched, and many health professionals and members of the public have never even heard of them.  The symptoms of these disorders can be extremely distressing to patients and their carers, and are often misdiagnosed, which is why we are calling for a specific strategy to address them as part of the UK government’s dementia plan.”

The call for Lewy Bodies and Parkinson’s dementia to be addressed by the UK government’s dementia strategy was made during a symposium convened by the NIHR Dementia Biomedical Research Unit (BRU) at King’s College London, aiming to raise awareness of Lewy Bodies and Parkinson’s dementia among medical professionals and researchers.  The BRU at King’s College London hosts one of the UK’s only groups researching dementia with Lewy Bodies and Parkinson’s Disease dementia.

The UK government recently published an implementation plan for its 2020 dementia challenge, which aims to make England the world leader for dementia research and treatment by the end of the decade.  While the plan provides a detailed blueprint for addressing the many complex challenges of dementia care and treatment, it does not refer specifically to the treatment and diagnosis of Lewy Bodies and Parkinson’s dementia, leading to concerns that patients with these conditions will be left behind.

Professor Clive Ballard, Director of the NIHR Dementia BRU at King’s College London, says, “While the UK government’s commitment to tackling dementia is commendable, it’s vitally important that the unique challenges of Lewy Bodies and Parkinson’s dementia are better recognised and planned for. We hope that by improving recognition among researchers, medical professionals, and the public, we can go some way to reducing the problems of misdiagnosis and poor treatment which stem from the poor awareness of these conditions.”

Researchers at the meeting announced details of several clinical trials which are about to commence testing new treatments for these disorders.  One phase 2b trial, the HEADWAY-DLB Study, will examine whether an experimental compound called RVT-101 can improve the symptoms of dementia with Lewy Bodies.  Other work in the research group is examining whether the drug pimavanserin, recently shown to be effective in treating psychotic symptoms in Parkinson’s Disease, can also be used to treat patients with Lewy Bodies dementia.

The meeting on Tuesday 12 April was attended by leading international researchers in the field from the UK, Germany, US and elsewhere, with the programme covering all aspects of Lewy Bodies and Parkinson’s dementia.