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In this episode of the Dementia Researcher Podcast, we focus on Lewy body dementia and why it remains one of the most misunderstood and frequently misdiagnosed forms of dementia.

Released ahead of Lewy Body Dementia Day on 28 January, the conversation explores what Lewy body dementia is, how it sits between existing diagnostic categories, and why it often takes years for people to receive the right diagnosis.

Host Dr Sam Moxon is joined by three researchers working on Lewy body dementia from very different angles. Dr Ece Bayram, Assistant Research Professor at the University of Colorado Anschutz, whose work explores differences in risk, progression and diagnosis across sex, gender, ethnicity and race. Dr Joe Kane, Consultant Psychiatrist and Clinical Lecturer, who combines clinical care with research into diagnosis, service delivery and clinical trials. Dr David Koss, Lecturer and Group Lead at the University of Dundee, studying the cellular and molecular mechanisms underlying Lewy body dementia

Together, they unpack why Lewy body dementia does not follow a neat clinical pathway, how overlapping symptoms can lead to confusion with Alzheimer disease or Parkinson disease, and why uncertainty in diagnosis affects everything from care planning to research outcomes.

The discussion highlights the real world consequences of misdiagnosis, including inappropriate treatments, faster than expected progression, and the emotional toll on families and care partners. The guests also reflect on how limited awareness of Lewy body dementia continues to shape health services, research recruitment and public understanding.

Across the episode, a clear theme emerges: Lewy body dementia cannot be understood from a single perspective. Clinical insight, biological research and population level studies all need to connect if progress is to be made.

Key takeaways

• Lewy body dementia includes dementia with Lewy bodies and Parkinson disease dementia
• Symptoms extend beyond memory and can include hallucinations, sleep disturbance, fluctuations and movement changes
• Diagnosis is frequently delayed due to overlapping features with other dementias
• Misdiagnosis can lead to harmful treatments and inappropriate care planning
• Care partners play a central role in both diagnosis and ongoing support
• Research cohorts often lack diversity, limiting understanding of the
• Cellular mechanisms such as alpha synuclein dysfunction remain an important area of study
• Early and accurate diagnosis improves care, planning and research quality
• Multidisciplinary collaboration is essential to understanding the disease
• Public awareness is key to improving detection, funding and outcomes

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A transcript of this show, links and show notes and profile on all our guests are available on our website at https://www.dementiaresearcher.nihr.ac.uk.

If you prefer to watch rather than listen, you will find a video version of this podcast on Apple Podcasts, YouTube, and on our website.

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