Parkinson’s is a life-changing disease—not only for the person affected but also for those who stand beside them. Family caregivers are often alone and under-supported, even if the first aid measures are starting to appear.
When illness affects the whole family.
In Italy, it is estimated that over 300,000 people live with Parkinson’s disease.
But behind every diagnosis, every treatment, every small daily gesture, there is almost always another figure facing the disease day after day: the caregiver. Most of the time, this is a family member—three times out of four a woman—aged between 55 and 70, living in the same home as the patient. A constant, indispensable presence, playing a silent yet vital role in making daily life manageable.
Despite being the backbone of home care, caregivers are often overlooked, excluded from care pathways and support networks, left to bear an increasingly heavy emotional and physical burden alone.
The burden of care: between fatigue and isolation.
Parkinson’s disease is not limited to tremors and muscle rigidity. Over time, non-motor symptoms also emerge, such as insomnia, depression, cognitive decline, and speech difficulties. This leads to a growing need for continuous care—most of which falls on the shoulders of family members.
“Parkinson’s doesn’t only affect the person diagnosed—it involves the entire family circle,” explains Prof. Mario Zappia, President of the Parkinson Foundation Onlus and Director of the Neurology Clinic at Policlinico di Catania.
According to a recent survey conducted by the LIMPE Foundation for Parkinson’s in collaboration with Confederazione Parkinson Italia, 75% of caregivers suffer from chronic fatigue, and 65% report severe sleep problems. Fifteen percent had to quit their jobs to provide full-time care. And yet, despite this continuous commitment, 70% receive no support at all, and only 9% have had access to specific training. The rest rely on instinct, good will, and often, improvisation.
Being present, even when unprepared.
The picture that emerges is clear: most caregivers face a complex task without adequate tools. This not only exposes them to stress and loneliness but also puts them at serious risk of becoming ill themselves. In this context, accessible solutions that support both the patient and the person accompanying them are vital.
One such example is Gondola®, a non-invasive home-based therapy that improves the quality of movement and walking by providing targeted stimulation to the feet. When walking is impaired, the patient’s autonomy is drastically reduced—directly affecting the quality of life of the caregiver as well. Supporting the mobility of people with Parkinson’s, in a way, also means lightening the burden of those who support them.
Toward an alliance between those who care and those being cared for.
The need to build a stronger support network was central at the “Parkinson Body and Soul” Forum held in Naples in March 2025. This event brought together doctors, neurologists, healthcare professionals, caregivers, and people with Parkinson’s with the goal of fostering open and constructive dialogue.
“Parkinson’s,” explained Forum coordinator Alessandro Tessitore, “is a complex challenge that must be tackled on multiple levels: medical, psychological, and relational.” A challenge that involves everyone around the patient—and one that becomes less overwhelming when a true alliance is formed between those who provide care and those who receive it. It’s not only about clinical solutions, but about recognizing the person in their entirety—listening to them, accompanying them.
Financial aid isn’t enough—but it makes a difference.
In this context, where home care for those with Parkinson’s often falls to family caregivers, the greatest challenge—besides emotional and physical strain—remains financial. Many relatives are retired or employed in inflexible jobs, and without support, they cannot afford external help.
For this reason, the Caregiver Bonus was refinanced in 2025. It is intended for those who provide continuous, unpaid care to non-self-sufficient family members. The contribution is available to caregivers recognized under Law 104 who are the primary point of contact for the person receiving care. It may include employment benefits, paid leave, extraordinary leave, and financial support, depending on household income (ISEE) and the severity of the disability.
The rights of caregivers are not a side issue—they are an integral part of managing neurodegenerative diseases such as Parkinson’s. Those who care, often in silence, need support, recognition, training, and to be heard.
A network is needed. Time is needed. But sometimes, even a small gesture can make a big difference.
Sources:
Parkinson’s disease: 70% of caregivers are alone and poorly supported. April 2025
https://superando.it/2025/04/29/malattia-di-parkinson-il-70-dei-caregiver-soli-e-poco-supportati/
Parkinson’s disease: activities, needs, and expectations of family caregivers. April 2024
https://www.sanitainformazione.it/salute/malattia-di-parkinson-attivita-bisogni-e-aspettative-dei-caregiver-familiari/
Parkinson Foundation – Convention Archive
https://www.fondazionelimpe.it/convention
Parkinson Italy Confederation – Advice and Strategies
https://www.parkinson-italia.it/consigli-strategie/254
Parkinson Italy Confederation – Caregiver Checklist
https://www.parkinson-italia.it/checklist-caregiver/257
Caregiver Bonus: what it is and who qualifies. February 2025
https://www.serenis.it/articoli/bonus-caregiver/
Gondola Medical – News for Parkinson caregivers
https://www.gondola-medical.com/it/news/caregiver-parkinson/
