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Understanding Dementia with Lewy bodies

Our researchers here at Newcastle University joined with colleagues from across the UK to celebrate the 10th anniversary of the Lewy Body Society at the Centre for Life on Friday 18th November 2016.


Although it is not widely known, Dementia with Lewy bodies (DLB) is actually the second largest type of dementia after Alzheimer’s disease. Newcastle University has been at the forefront of research into the disease, and the Lewy Body Society (founded in 2006) has been raising awareness and funding new research into the disease for the past 10 years.

This national event, co-organised by the Faculty of Medical Science’s Dementia Innovation Hub, the Biomedical Research Centre and the Lewy Body Society, brought together researchers, carers and practitioners at the Centre for Life to reflect on the successes of the last 10 years. It was also an opportunity to look to the future of DLB research.


Jacqui Cannon, CEO of the Lewy Body Society, described her highlights from the last 10 years, including her quest to raise awareness of DLB and build relationships with people living with the disease, carers, researchers, funders and practitioners. She spoke of the value she placed on their collaboration with the Carers Trust and the involvement of care homes. From her own experience, Jacqui described the issues she faced as a working carer, which resonated with many people in the audience, such as lack of sleep, and the challenges of finding the right care home with knowledgeable staff.

_dsc5509Newcastle University has been at the heart of developments in DLB research. The NIHR Biomedical Research Unit here in Newcastle is a Centre of Excellence – the only Lewy Body dementia research unit in the world. The BRU supports a range of studies, such as research to identify the disease early.  We were delighted to learn that a further £16 million of funding was recently awarded to fund research at the Centre for the next 5 years.

In his presentation Professor Ian McKeith, leading researcher into DLB at Newcastle and President of the Lewy Body provided the context for the early studies at the University, finding evidence that dementia was not due to brain ageing but rather diseases of the brain.


Professor McKeith explained that ‘Lewy bodies’ are proteins called alpha-synuclein. These contributed to brain damage to nerve cells when enzyme systems in the brain are not working properly, and can lead to cell death. There are lots of clinical presentations of DLB, depending on where in the brain the disease starts, including visual hallucinations, Parkinsonian symptoms and fluctuating attention. If damaged cells come in contact with another, the disease eventually spreads throughout the brain.  Describing the the development of research into DLB to date, Professor McKeith likened it to the metaphorical tale of the blind men and the elephant by John Godfrey in 1872 – researchers often describe just one element of the process, but a more holistic approach is needed for a full understanding. Newcastle is trying to integrate research from a variety of perspectives and approaches. Working collaboratively with colleagues from around the world, we now have agreed diagnostic criteria for the disease, brain imaging methods using DAT scan technology (developed at Newcastle) that are licenced throughout Europe, and the first clinical trials into potential treatments.

We also heard from our colleagues in other parts of the UK whose research is also funded by the Lewy Body Society Dr. Jay Amin, from the University of Southampton described the relationship between inflammation in the brain and DLB, which may act as a biomarker for earlier and more accurate diagnosis. Dr. Jose Bras, from University College London explained the overlaps and differences in the genetics of DLB compared to other related diseases. His research has discovered that there is a closer relationship to Alzheimer’s and Parkinson’s disease than to vascular dementia. Josealso found that for Alzheimer’s disease, approximately 50-70% is driven by genetics, whereas it is closer to 30% for DLB and Parkinson’s disease.  As yet researchers have not found the gene where mutations cause DLB, so it’s clear that more genetics research is needed.

josebras_lbsconf3 _dsc5579

After hearing about the science of DLB, Claire Bamford from Newcastle University Institute for Ageing introduced us to her research which explored the experiences and perspectives of patients and carers of DLB in the Diamond Lewy Study. She described the isolation facing carers, and the need for peer support.

_dsc5614Later Professor John O’Brien from Cambridge University remarked that there was a real desire among researchers to remove the barriers to diagnosing DLB. Because of research, there is now sufficient information and guidelines that should mean DLB is no longer difficult to diagnose.  Professor O’Brien added that DLB is now embedded in medical school curricula. Professor McKeith agreed that there was a need to dispel the myth that diagnosing DLB is difficult.

john-obrien-presentationAfter such thought provoking presentations, many participants agreed that the day had helped to increase their knowledge of the distinctive symptoms of DLB. The panel discussions raised some interesting questions from the audience, which highlighted the areas where further research is needed, including:

* Prevalence of DLB (given misdiagnosis)

* Gender and the prevalence of DLB

* Delirium and DLB

* Awareness of DLB among care home staff

* Challenges of undertaking drug trials for DLB

* Lived experience of DLB and non-pharmacological treatments

* A-typical cases and the development of sub-types of DLB

Our panel of DLB experts were asked to consider priorities for the next 10 years of the Lewy Body Society. For Jacqui Cannon of the Lewy Body Society, this would be to continue raising awareness of DLB and to continue to fund more research that can help carers. Dr. Jay Amin argued for a focus on diagnosis, and to ensure carers have adequate support for the unique challenges they face. Dr Jose Bras would like to see more research into genetics of DLB. Professor O’Brien would like to see NICE guidelines developed on DLB, moving on from general advice on ‘dementia’ and ongoing dissemination of research to the public.


Professor McKeith stated his priorities for the next 10 years would be to build bridges with Alzheimer’s and Parkinson’s communities, and host an international conference in Newcastle in the near future.


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