Lewy body dementia advocates push for biomarkers, data infrastructure and a haloperidol safety priority

Dr. Sudhir Silvakumaran, chief scientific officer at the Lewy Body Dementia Association (LVDA), told the council that Lewy body dementia (LBD) is common and underdiagnosed and urged three priorities: development of LBD‑fit biomarkers (including measures of alpha‑synuclein and co‑pathologies), coordinated clinical and patient‑reported data infrastructure, and earlier, active involvement of people living with LBD and their care partners in research and regulatory decisions.

Julia Wood, director of professional and community education at LVDA, urged the council to treat haloperidol exposure for people with LBD as a national patient safety priority. She described severe neuroleptic sensitivity in LBD and cited FDA labeling: "Haldol is not approved for dementia related psychosis... Parkinson's disease and dementia with Lewy bodies are listed as contraindications." Wood asked for clinician and first‑responder education, emergency department and hospital protocols, medication reconciliation prompts and EHR alerts to prevent contraindicated medications from being administered in crisis.

Both speakers linked better diagnostics and data to safer care: Silvakumaran called for biomarkers and data infrastructure to support therapeutic development; Wood said practical safeguards across clinical settings would reduce avoidable harm and asked the council to include LBD‑specific guidance in the national dementia strategy.