In France, 1.4 million people today live with Alzheimer’s disease or a related illness. Faced with the risk of isolation, the association defends a simple conviction: continuing to live, going out and occupying one’s place in society remains possible, provided that society also agrees to make room for illness.
The diagnosis should not signify the end of social life
There is the shock of the announcement. Then, sometimes, a change of outlook. As if the diagnosis suddenly reduced a person to their illness: before, a person with their habits, their desires and their projects; after, “an Alzheimer’s patient”.
It is precisely against this view that France Alzheimer and related diseases intends to fight on the occasion of World Alzheimer’s Day, September 21.
France counts today 1.4 million people living with Alzheimer’s disease or a related disease. According to Alzheimer Europe, this number could almost double by 2050. Behind these figures, there are lives turned upside down, but also people who continue to have desires, projects and the need to remain surrounded.
Because illness can lead to another, less visible risk: that of renunciation. Activities, leisure activities, outings, sometimes a place in society.
“Sick people remain people with desires, capacities and projects. They must be able to continue to occupy their place in society. But it’s also up to society to make a place for them.” declared
Joël Jaouen, president of France Alzheimer and related diseases.
Go out, move, share: preserve what still feels good
This place is also built in ordinary moments: a walk, a physical activity, a cultural outing, a dance workshop or a few hours spent in a garden.
For more than 40 years, France Alzheimer and related diseases has supported sick people and their loved ones. The association also finances research, trains health professionals and the medico-social sector, raises awareness among the general public and carries out actions with public authorities.
But support also means allowing us to continue living beyond the illness.
“It is not a question of denying the difficulties and suffering, but we do not want to reduce sick people to these” underlines Joël Jaouen.
In the network’s associations, adapted physical activities, cultural outings, therapeutic gardens and even dance workshops are offered. Some initiatives bring together several generations.
This philosophy is at the heart of the national campaign “With you, on all terrains”deployed until October 10 and supported by triple Olympic champion Marie-José Pérec. The network matters 102 departmental and territorial associationswho support sick people and their caregivers.
Breaking down barriers, one activity at a time
These initiatives are not simple leisure activities. They also make it possible to maintain links and fight against the isolation which can gradually set in around the illness.
On the occasion of World Alzheimer’s Day, the France Alzheimer network will offer events throughout France open to sick people, their loved ones and the general public.
In Paris, the fourth edition of Memorun will take place on September 19 and 20 in the Bois de Vincennes. On the program: 5 and 10 kilometer races, event for children, 5 kilometer walk, activities and information area. Some 7,500 people are expected during the weekend.
Marie-José Pérec as well as several athletes and former champions, including boxer and Olympic vice-champion Sarah Ourahmoune, will be present. The profits from the event will be donated to France Alzheimer and related diseases.
A society which must also learn to make a place
Behind this mobilization lies an essential question:
what place does our society agree to leave to people whose abilities are evolving?
Supporting a person with Alzheimer’s does not just mean anticipating their future difficulties. It’s also looking at what she can still do, what she likes and what she wants to continue to share with others.
The challenge concerns loved ones and caregivers, but also associations, communities, cultural places, sports clubs and each of us.
Because a person does not only become “sick” the day they receive a diagnosis. She remains a relative, a friend, a neighbor, a lover of music, gardening or sports.
Illness can be life-changing. She should not decide alone what place remains to be taken there.