Caregivers of the patient with Parkinson's disease

Parkinson's disease poses a challenge not only to those with the disease but also to those who care for the patient.

Caregivers. These are often family members or close people who take on a key role in supporting those living with this condition. Caregivers face difficulties and responsibilities that can profoundly impact their lives, and understanding these dynamics is essential to offering them the support they need. Below, we will explore the main challenges they face and the resources they can access.

The complex role of the caregiver

Taking on the role of caregiver for a person with Parkinson's disease means dealing not only with daily needs, but also with the emotional aspect and difficulties that the disease brings. Parkinson's is a progressive disease that can affect a patient's movement, balance, speech, and mood, which requires careful observation and constant adaptation on the part of the caregiver. From supporting mobility, managing medications and doctor visits, to monitoring changes in the patient's behavior and emotions, the caregiver must juggle multiple tasks, which often evolve over time.

The emotional challenges of caregiving

Caring for a person with Parkinson's disease can carry a significant emotional burden. It is natural that the caregiver may experience feelings of stress, anxiety and, at times, a sense of isolation. Witnessing a gradual loss of independence from one's loved one and managing daily difficulties can have a major psychological impact. For many caregivers, it becomes crucial to be able to rely on moments of support, such as listening groups or counseling, to share their experiences and relieve emotional pressure.

In Italy, associations such as the’Italian Parkinsonian Association (AIP) and Parkinson's Italy Onlus offer psychological support services and self-help groups, while the Limpe-Dismov Foundation organizes information and support activities. In Ticino, caregivers can also turn to entities such as. The Swiss Parkinson's Association - Ticino and Moesano Section, which offers counseling and listening groups, or at the Pro Senectute Ticino and Moesano, which provide support to caregivers of people with neurological diseases. These organizations help caregivers not to feel alone and find the support they need to cope with daily challenges.

Time and resource management

Time management represents a significant challenge for caregivers of a person with Parkinson's disease. Indeed, many caregivers must balance their work, family and other personal responsibilities with the needs of the patient. A first step to becoming better organized is to create a daily or weekly plan, defining major activities and providing specific times for rest and leisure to avoid overload.

Establishing a support network, consisting of family members, friends, or neighbors, can also prove crucial in handling any unforeseen events and getting help when needed. In addition, relying on professional or in-home caregivers, if possible, can lighten the workload, allowing the caregiver to focus on emotional and relational aspects of caregiving.
It is equally important to inquire about available financial resources and work leave: many caregivers are entitled to financial contributions or hours off work, entitlements that can make a difference in the overall balance.

The importance of physical and practical support

Along with emotional support, caregivers need practical help to manage the patient's physical needs. Mobility, in particular, can become a complex challenge as Parkinson's progresses. In addition to aids and physical therapy techniques, the assistance of an occupational therapist can be invaluable: these professionals help develop strategies and adaptations that improve the patient's autonomy in daily activities while reducing the risk of caregiver overload.

In addition, innovative therapies such as the AMPS Gondola can be a valuable adjunct in improving motor symptoms such as balance and walking. Having expert support and access to practical solutions enables the caregiver to safely and appropriately care for their loved one, improving the quality of life for both.

Being a caregiver for a person with Parkinson's disease is a complex commitment, requiring dedication, energy, and resilience. Awareness that one is not alone in this journey, as well as knowledge of available resources, can make a big difference. Seeking help, investing in one's own well-being, and participating in support networks are essential steps to ensure effective care and a satisfying quality of life, not only for the patient, but also for caregivers.