Largely unknown to health professionals and the general public, Lewy body disease (MCL) affects around 200,000 people in France, making it the second neurocognitive disease behind Alzheimer’s disease. Since 2019, the Association of Carers and Patients with Lewy Bodies (A2MCL) has been raising awareness, funding research and advocating for better recognition. Philippe de Linares, president and former caregiver, explains the issues surrounding this disease.
Comments collected by Renaud Degas with Géraldine Bouton.
Can you remind us what Lewy body disease (LCD) is?
Philip of Linares: It is a complex and neuroprogressive neurocognitive pathology. Identified in the 1970s, it was long confused with Alzheimer’s and Parkinson’s diseases. All of these diseases have in common that they are proteinopathies, or an abnormal accumulation of proteins.
In the case of the MCL, the abnormal protein accumulationsTHE Lewy bodyspread in the cortex and affect different areas of the brain, which triggers symptoms that vary from one patient to another, such as attention problems, fluctuation in cognition which can lead to confusion with bipolar disorder and, in some cases, motor disorders and often behavioral disorders. The disease also presents uncommon symptoms such as hallucinations.
No epidemiological study has been carried out. The number of cases in France has however been estimated between 150,000 and 250,000but alone two thirds of sick people have been diagnosed.
How do you explain this underdiagnosis?
P. of L.: Lewy body disease is still insufficiently known to caregiverstherefore often misdiagnosed. Health professionals who graduated in the 20th century did not study it, or very little. However, the situation is improving. Although it is still often wrongly referred to as an “Alzheimer’s-related” or “Parkinson +” disease, MCL is starting to be considered as a disease in its own right.
Research is beginning to address the subject. It is true that the clinical picture varies greatly depending on the patient, which further complicates the diagnosis.
How does the disease progress?
P. of L.: We lack longitudinal data because diagnoses have long been made late, at an already advanced stage. The course is very variable but a period of 15 to 20 years may pass before the disease becomes difficult to manage.
People with MCL are lucid, hypersensitive and can go from euphoria to sadness, from apathy to normal. These fluctuations are difficult to understand and manage for the patient and those around them.
A quick consultation does not always allow them to be detected. On the other hand, knowing the disease well improves daily life.
How can we support people suffering from this still poorly diagnosed disease?
P. of L.: Confusion with other diseases often leads to inadequate care. For example, certain psychotropic drugs can accelerate the progression of the disease and, in the most serious cases, cause death within a few hours. In the current state of knowledge, treatment must be individualized.
A good knowledge of the symptoms allows you to adapt the support. A patient diagnosed early, who is explained the hallucinations and fluctuations in cognition, will be able to understand what is happening to them and better manage the situation. And trained and caring caregivers and healthcare professionals will be able to adapt.
A2MCL supports research. What themes are you investing in?
P. of L.: We mainly support improved diagnosis and treatment. Today, there are no suitable treatments which help slow the progression of the disease. For example, we support research projects on transcranial stimulation or the identification of specific blood biomarkers.
Since our creation, we have tried to fund one or more research projects every year. At the beginning, we had few requests. From now on, the projects are more and more numerous and varied.
What actions has the association taken, particularly with public authorities?
P. of L.: In 2023, the A2MCL joined forces with international associations to carry its voice further and create a global awareness day. The next one will take place on January 28, 2025and the emphasis will be on training. We also published a plea which we addressed, among others, to the Ministry of Health. We call for replacing the term “related” disease, used to describe MCL, with that of neuroprogressive or neurodegenerative disease.
We also call for the creation of a specific long-term condition and the labeling of Memory Centers. Finally, we ask for the implementation of teaching on MCL in the initial and continuing courses of doctors and paramedical professionals, which is only very sporadically the case today.
Have you been heard?
P. of L.: We were involved in a reflection on a national strategy dedicated to neurodegenerative diseasesa strategy which has still not seen the light of day. Some of our requests, such as the labeling of Memory Centers and the removal of the concept of related illness, should be taken into account. However, the successive changes at the head of the Ministry of Health slow down progress.
Thus, we ourselves had to develop training and information systems for the MCL such as the lewyformation.fr e-learning platform. But we are confident.
Without a communications campaign, we were joined by nearly 15,000 people in just five years. Our information meetings are always full and are attended by more and more caregivers! And we are increasingly asked to deliver our training on the disease.
Learn more aboutAssociation of Carers and Patients in Lewy Corps
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