Every January 28, a still little-known date is included on the health calendars: the World Lewy Body Disease Day. Behind this complex name, patients who see their mood, their walking or their memory transform in a few hours, and loved ones who have one appointment after another without a clear answer.
In France, the Lewy body disease is the second neurocognitive disease after Alzheimer’s, with nearly
200,000 patients. Yet nearly two-thirds are not correctly diagnosed, lost between labels of Alzheimer’s, Parkinson’s or psychiatric disorder. At the heart of this world day, one issue comes up repeatedly: putting an end to
medical wandering.
World Day: Lewy body disease comes out of the shadows
Created on January 28, 2024 at the initiative of the association
A2MCL and several foreign organizations, the world day wants to give a face to a dementia that has long remained in the shadows. The 2025 edition placed emphasis on the training of caregivers. That of 2026 carries a more direct demand: that no more patients go years without a reliable diagnosis.
This date is also full of emotion since the disappearance, on January 28, 2025, of Catherine Laborde, honorary godmother of the A2MCL, also suffering from MCL. Around this day, the association offers “Open Doors Lewy”meetings in hospitals, memory centers or nursing homes to explain the illness, cross-reference experiences and initiate clearer care pathways.
Medical wandering and Lewy body disease: the price of false diagnoses
MCL combines memory or language disorders, hallucinations, delusions, behavioral changes, agitated nightmares and motor problems similar to Parkinson’s. Everything varies enormously from person to person, sometimes from one day to the next. Enough to confuse doctors and explain that two out of three patients receive another diagnosis for months, sometimes years.
Meanwhile, families face crises alone, desperately seeking structures or trained home help. Inappropriate treatments, particularly certain neuroleptics, can worsen symptoms or lead to serious side effects or even early death. For the A2MCL, the caregivers, this “silent army” of eleven million French people, also bear the weight of this wandering, as Thomas Stern recalls in his book Is there life after your death?.
A2MCL asks a structured, readable care pathway adapted to the specificities of MCL
In a plea addressed to public authorities and an online petition, the A2MCL bears an explicit title: “For a care pathway adapted to the specificities of MCL which puts an end to the medical and diagnostic wandering of the 200,000 patients with Lewy bodies”. The association is calling for a structured diagnostic pathway, from the general practitioner’s office to MCL-certified memory consultations in each department, based on the identification tool validated by the High Authority of Health and on the PASSCOG system to speed up assessments, as well as an emergency response to behavioral disorders and a training plan for all those involved.