This June, after a year’s delay due to COVID, the international Lewy Body Disease community came together again in the biannual International Lewy Body Disease Conference in Newcastle, UK. Over 3 days we saw a wide range of amazing talks by world experts in the field as well as early career researchers, whilst a concurrent carers stream organised by the Lewy Body Society further enhanced the conference’s programme. An added plus were the excellent social events organised on both days in a splendidly sunny Newcastle!

The conference started with a welcome by two legends of Lewy body disease and of Newcastle University, Professor Alan Thomas and Professor David Burn who set the tone for a fantastic meeting. The scientific programme was too extensive to summarise, covering the whole range of Lewy body diseases: from genetics, to fluid biomarkers, prodromal disease, clinical symptoms, neuroimaging, therapeutics, neuropathology and mechanisms of disease. The format of each symposium, with six 15 minute sessions including both talks by senior researchers and clinicians and early career researchers kept everyone alert and engaged.

A key theme from the conference was moving away from a research focus on only Dementia with Lewy bodies (DLB) to applying lessons from wider related disorders. This was a common theme throughout the conference: in a plenary on clinical synucleopathies, Professor Ron Postuma from McGill University, Canada, discussed the link between REM sleep behaviour disorder and how it can be a useful area of study to better understand prodromal disease in both DLB and Parkinson’s disease (PD). Further highlighting this point, Dr Sonja Scholz, NIH, US, during the genetics symposium highlighted the results of a recent gene wide association analysis (GWAS) of DLB which found that DLB genetic risk is a complex overlap of Alzheimer’s disease and PD. Similarly, Dr Aaron Wagen, UCL, UK, reported findings of shared heritability between DLB, PD and Alzheimer’s when looking within specific loci of the genome, specifically SNCA and APOE4, although this only explained approximately 50% of the genetic risk of the disease. Finally, the importance of vascular pathology in DLB was highlighted from a dual perspective: in the neuropathology symposium, Dr Lauren Walker, Newcastle University, UK, highlighted cerebral amyloid angiopathy (CAA) which occurs both in DLB and PD dementia but with a different topographical distribution and with type 1 CAA more common in DLB, whilst in the neuroimaging session, Professor Daniel Ferreira, Karolinska, Sweden, talked about the differential contribution of cerebrovascular disease in grey matter degeneration in DLB.

Another key theme was the emergence of novel techniques and biomarkers which may be useful both in better understanding mechanisms of disease as well as for diagnosis and patient stratification in clinical trials. One new possible biomarker is EEG as highlighted by Dr Julia Schumacher, Rostock, Germany, with a shift to slower frequencies in DLB which is already seen in patients with mild cognitive disorder suggestive of Lewy body disease (MCI-LB) compared to both MCI with likely Alzheimer pathology and controls. Although more standardisation of EEG is needed, its wide availability, ease and low cost could make it a potentially useful marker to better diagnose MCI. Blood biomarkers are also emerging for disease monitoring and diagnosis as discussed in depth in a dedicated symposium chaired by Professor Omar El-Agnaf, Qatar Biomedical Research Institute and Professor Henrik Zetterberg, University of Gothenburg, Sweden: progress in alpha-synuclein assays, plasma p-tau and amyloid markers marks an exciting time in the field.

Finally, the last important theme of the conference was the need for better phenotyping of the disease, which may allow for better classification and prognostication at the individual level. Dr Eli Matar, Sydney University, Australia, talked about symptom clustering techniques and how they may inform better diagnosis, but also provided insights on pathophysiology and neuropathology, whilst Dr Anna Injuanzo, Karolinska, Sweden, talked about MRI-driven clustering of DLB subtypes that show different longitudinal cognitive performance and disease progression.

The conference also boasted a “Living with Lewy body” parallel stream where people living with Lewy body diseases and their families were able to hear about latest research but also network with other people living with dementia and their carers and become “empowered through information.” A joint session between the Scientific and Living with Lewy body disease streams with a personal story by Susan Williams, highlighted the importance of having the voices of individuals with the disease heard.

On the final day of the conference the Rising Star awards were presented, with the Gold preclinical award going to Dr Daniel Erskine, Newcastle, UK, and the Gold clinical award to Dr Callum Hamilton, Newcastle, UK. The packed 3-day meeting was drawn to a close with a debate on whether it is now time for a trial of an amyloid lowering agent in DLB with Dr Jim Galvin advocating for and Dr John Duda against the motion. The answer to the question is inconclusive, depending on who you ask, but the debate highlighted the complexities of the issue and was an interesting and entertaining conclusion to the conference!

Having provided an opportunity for learning as well as meeting and networking with peers worldwide and individuals living with Lewy body disease this was an amazing meeting – with all delegates looking forward to meeting again in 2024!