Due to their memory troubles, difficulties in orienting themselves in time or space, their forgetfulness, “many people think that individuals with Alzheimer’s disease are crazy,” confides Véronique Chabernaud, the designer of the train and also a doctor. She wants to clarify: “It is not a psychiatric disease but a neurological one.” In other words, a condition that affects the brain.
To dispel this false notion, the Alzheimer train began its journey at Gare de l’Est in Paris on September 7, 2010. For 12 days, it travels across France and will stop in Nice on September 14. This train has an educational purpose, aiming to “better explain what the disease is, to dispel false ideas, taboos, and misunderstandings,” explains Véronique Chabernaud. It is also intended to raise awareness of the various ways of care management, both in terms of medication and non-drug therapeutic aids, as well as home, legal, and social assistance. SNCF, the originator of this project, has partnered with numerous organizations such as France Télévisions.
What does this train consist of?
In the first carriage, “we explain what the disease is, its symptoms so that people have alert points” through photos, videos, or texts. Another carriage is dedicated to the families and close ones of patients, who need training and to maintain their own health. Suffering from stress, depression, and exhaustion, they are considered the “second victims” of the disease. Currently, 60% of patients live at home under the care of their relatives. To meet their needs, the caregiver dedicates between 7 and 17.5 hours a day to them. Thanks to the Alzheimer plan 2008-2012, caregivers have been able to benefit from two days of free training for several months now. Other cars of the train are dedicated to the prevention of the disease, to avoid or reduce the risks of contracting it. Major areas of research are also presented “whether it be in terms of treatments, understanding the disease, environment, genetics, technology.” In addition, there are conferences given by medical professors and members of associations. This way, visitors can ask their questions.
To date, there are 800,000 patients suffering from this degenerative condition, which is a source of concern for their close ones. “There is absolutely no curative treatment, only symptomatic ones that help to improve and delay the symptoms,” reminds Véronique Chabernaud. The train will complete its tour on September 21, 2010, at Paris Gare du Nord, which is the date of World Alzheimer’s Day.
