The number of people living with cognitive disorders, such as Alzheimer’s and Parkinson’s, is expected to almost triple within 30 years, according to a recent report from the Alzheimer Society of Canada. Less known, but just as confusing for patients and those around them, Lewy body disease or dementia (MCL) is one of the more difficult disorders to diagnose.
“We have been warning about aging for years, the first incidence of neurocognitive disorders. Now we have to find how to deal with it as a society,” says Sylvie Grenier, general director of the Fédération québécoise des Societes Alzheimer. Second among the most common neurodegenerative pathologies after Alzheimer’s disease, Lewy body disease (LCD) remains poorly understood.1 by science.
It takes its name from the Dr Friedrich Heinrich Lewy, the first to describe abnormal deposits (bodies) of a protein, alpha-synuclein, which appear inside nerve cells in the brain. American comedian Robin Williams suffered from a serious form of this disease.
“Compared to other disorders, the life expectancy of MCL patients is reduced, while the burden on caregivers and the cost to society are significantly higher,” notes Shady Rahayel, neuropsychologist and researcher at the Center of advanced studies in sleep medicine (CEAMS). Costs are higher because MCL symptoms are multiple and require several different types of care.
MCL currently represents 5 to 10% of all neurocognitive cases diagnosed in the country.
Multiple symptoms
Unlike Alzheimer’s disease, memory problems do not necessarily represent the first characteristic signs of MCL, which are instead concentration problems, visual hallucinations and strong fluctuations in consciousness. “My mother was experiencing very sudden changes in her condition,” remembers Ghislaine Bourque, a caregiver until her mother’s death, diagnosed with MCL. “She could be lucid and then completely confused in two minutes. »
Motor disorders, such as muscle stiffness, as well as psychiatric symptoms, such as aggression, are commonly observed.
My mother often fell, she felt like her feet were stuck in cement. She quickly lost her sense of organization and direction. But she still had her memory and realized that she was losing her abilities.
Ghislaine Bourque, caregiver
Difficult diagnosis
Several diseases can affect the brain at the same time and cause mixed neurocognitive disorders, which complicates the diagnosis. Lewy bodies are thus found in people suffering from Parkinson’s disease. “There is no clear marker for detecting MCL. We hope to be able to do this by blood test in a few years. We’re not there yet,” regrets the Dr Christian Bocti, director of the Neurology Department at the CIUSSS de l’Estrie – CHUS.
Degenerative diseases have an average survival time of around ten years. “But it’s very variable,” continues the Dr Bocti.
Some get very bad within five years, others survive more than 15 years. Although it is not so clear in the literature, it appears that people with MCL deteriorate more quickly.
The Dr Christian Bocti, director of the Neurology Department at the CIUSSS de l’Estrie – CHUS
More than 90% of people diagnosed with REM sleep behavior disorder – causing paralysis and spasms – will develop MCL within 15 years, according to Dr.r Rahayl. “But don’t panic if you move around a lot at night, it’s often benign. »
Personalized treatments
Like most neurodegenerative disorders, MCL remains incurable to this day. Cognitive loss, however, can be slowed with medications used to treat Alzheimer’s, called cholinesterase inhibitors. “The mild symptoms associated with Parkinson’s can also be temporarily controlled with certain medications such as Levodopa,” specifies the Dr Bocti.
Other strategies exist and have proven themselves, such as listening to and playing music, to “relieve” patients. At the start of the disease, some people with MCL and Parkinson’s follow sports training programs such as Rock Steady Boxing2which reduces the risk of falling and improves balance.
Overcoming stigmas
Since there is no cure, it is all the more important to maintain the quality of life of patients for as long as possible, by interacting adequately with them, according to the experts interviewed. “You have to try to validate the person’s reality or divert their attention with an object or a photo, which could bring back memories,” suggests Shady Rahayel.
Initially very confused by her mother’s anger, Ghislaine Bourque learned to decode her needs. “She no longer had the words, but she still had all the emotion to express herself,” she analyzes. I tried not to take the aggression personally. I learned to live in her present moment which was, for her, very real. »
Stress and racism
With changes in migration trends, the sharp rise in cognitive disorders will particularly affect people of Asian origin, who will represent nearly a quarter of cases, as well as people of African origin. People from Indigenous communities are also at greater risk and remain underdiagnosed.
Studies have shown that colonization and stress caused by racism can impact brain health. This so-called “psychosocial” stress causes structural changes in the physiology of the brain and accelerates its aging and the decline of memory. An American study3 of 2020 showed that African American women exposed to racism had an increased risk of impaired cognitive function.
1. Consult a study on the disease (in English)
2. Consult a study on Rock Steady Boxing (in English)
3. Consult a study on the question (in English)