Parkinson's, 74% of caregivers assist every day but without support

The vast majority of caregivers of people with Parkinson's disease provide daily care, but often lack financial support or adequate training. This is according to the first national study on caregiver burden, published in the journal Neurological Sciences and sponsored by the Limpe Foundation for Parkinson's Disease (ETS). Through an anonymous survey of 478 caregivers from across Italy, the study, conducted by Giulia Donzuso and Mario Zappia of the University of Catania, found that of 74% of caregivers, only 14% receive financial support. According to the survey, 15% of those interviewed left their jobs to care for a family member, and 65% reported repercussions on their physical and psychological health, including chronic fatigue, insomnia, depression, and social isolation. Only 9% have received specific training, while 40% express a desire to receive it. Financial difficulties are common: 60% report a deterioration in their financial situation, exacerbated by healthcare and care expenses. Patients are primarily cared for by women, often cohabiting partners, who are particularly vulnerable to job losses and physical and psychological hardship. "Our research," explains Zappia, "is a first step toward restoring a voice and dignity to thousands of people who, every day, support their loved ones in the shadows.

Now it's up to institutions and civil society to heed this call and turn it into concrete action. The study calls for the adoption of more structured support policies, including concrete training, support, and formal recognition of the caregiver's role in the healthcare system. "Caregivers are a silent and irreplaceable bulwark of our healthcare system," concludes Michele Tinazzi, president of the LIMPE Foundation for Parkinson's Disease (ETS). "It is our duty, as a scientific and civil community, to recognize their value and guarantee them the necessary support."