LAlzheimer’s disease is the expression of existential suffering and a form of social decline. It affects the integrity and identity of the person, self-image, capacities for discernment and self-determination, and relational life. To the point of evoking the “white mourning” of loved ones which accompanies the inexorable decline of those whose presence in the world fades before their death.
Even if in recent months theutic strategies have made it possible to envisage medical advances, the announcement of the illness is experienced as a sentence that is difficult to bear since it means that the person will undergo the ordeal of being dispossessed of what they are. .
Living a strange exile at the confines of her thoughts, what will happen to a reality from which she will seem, at the advanced stage of the illness, apparently absent? For those close to them, themselves relegated to an altered memory, how can they maintain a presence whose ultimate meaning they have hope of?
Professionals and members of ociations around them are convinced that their attachment to the person in support and care is the expression of this ethical resistance opposed, in the name of society, to the temptation to abandon the other in his perdition. Because in fact, it seems obvious today that the person preserves the singularity and the enigma of his existence until the end of his life.
A link that is all the more essential remains when it is understood as a true relationship, however uncertain, complex and formidable it may be. Beyond a recognition of the other being invulnerable to the justifications for renunciation, it is a moral position which takes on an obvious democratic meaning in a context of weakening of concerns and social bonds, sometimes insulting to the idea of fraternity.
People who develop Alzheimer’s disease are at increased risk of having their fundamental rights violated. They are particularly vulnerable to stigmatization, mistreatment, abusive restrictions on freedom and exclusion from social life. Approaching this disease from the angle of the principles of humanity should not only make us vigilant to the deprivations, restrictions or denials of rights to which elderly people whose cognitive skills may be vulnerable.
This must also serve to define a political project that better integrates into social life the concern and responsibility of those whom we must better recognize in our concern, our decisions and our practices. Promoting everything that contributes to allowing them to exist with and among us should be placed among the priorities of the rebuilding of our social humanism.
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