Adnkronos (Adnkronos) – "This green light is a light that also illuminates our responsibility, obviously, as an institution, as a Region." Thus Angelica Saggese, Councilor for Labor and Training for the Campania Region, spoke yesterday in Paestum on the occasion of the 19th National ALS Day—during which hundreds of symbolic sites across Italy, such as the Temple of Neptune in Paestum, were illuminated green—recalling the institutions' commitment not only to those affected by amyotrophic lateral sclerosis, but also to the families and caregivers who care for them every day.
"We imagine that citizens suffering from this disease should be able to live an ordinary life, a common life, let's say, like everyone else. Therefore, our utmost effort is to try to ensure their inclusion and as ordinary a life as possible," Saggese emphasized.
For the Region, an important part of assistance comes from the possibility of staying at home, close to one's family.
"We prefer them to be at home, cared for by their families, to be able to live with their loved ones, and to find support measures and tools there," the councilor explained. "The Campania Region provides care allowances, which vary: a monthly care allowance of €1.200 or €600, depending on the severity of the condition.
It provides and assigns devices and technological support, because in many circumstances, as the disease progresses, there is a need for communication support for patients." But, Saggese emphasized, support must also include those who care for the patient on a daily basis. "From the discussion with Aisla, the idea emerged of also taking care of caregivers, because they play an important role because many of them, and in many cases especially women, give up their own lives, give up their jobs, give up their businesses, in order to care for a family member suffering from ALS with such affection and commitment."
Particular attention was therefore paid to caregiver training. "It's also a training activity for them, because it's true, they learn on the job how to do what they have to do because they're forced to, but if we were able to train them earlier, they would certainly be better able to care for their families," she said. The issue also concerns the moment when caregiving ends. "We must also ask ourselves the question: what happens to caregivers when their caregiving activity ends, when they no longer perform this activity?" Saggese emphasized, highlighting the risk of finding themselves, after years of giving up work, "in the impossibility and difficulty, and disorientated, of deciding what to do. We must try to take charge of them, retrain them, understand which direction to guide them, to train them, to try to give them the opportunity to reintegrate into the workforce and continue their lives in a normal and regular way," the councilor concluded.
News
webinfo@adnkronos.com (Web Info)