Why Neurologists Should Address Caregivers’ Information Needs in Parkinson Disease
KEY TAKEAWAYS
- Care partners of people with Parkinson disease reported needing more guidance on daily life changes, expected disease course, and emotional coping.
- Information needs extended beyond disease education to include social participation, reassurance, and uncertainty management.
Care partners of people with Parkinson disease (PD) described a need for timely, individualized information to help navigate caregiving responsibilities and maintain well-being, according to research presented at the 7th World Parkinson Congress (WPC). The findings support collaborative, person-centered education involving neurologists and multidisciplinary care teams, people with PD, and care partners
The qualitative study included 15 care partners of individuals with PD representing all stages of disease. Participants completed interviews in focus groups, individually, or in pairs using open-ended questions designed to explore caregiving experiences and information needs. Researchers analyzed responses using reflexive thematic analysis.
What Care Partners Said They Needed
- Guidance on preparing for symptoms that increasingly limit daily activities.
- Strategies for preserving social participation and maintaining relationships.
- Reassurance and shared experiences from other caregivers.
- Support coping with uncertainty related to disease progression and future caregiving demands.
The analysis identified 4 overarching themes: preparing for changes in daily life, preserving participation and social life, finding reassurance with others, and coping with uncertainty. Investigators noted that caregivers sought information addressing not only practical caregiving challenges, but also emotional, social, and existential concerns associated with caring for a family member with PD.
According to the study authors, the findings support development of holistic information-based interventions built on collaboration among healthcare professionals, people with PD, and care partners. The researchers suggested that more tailored educational support may help improve caregiver well-being while strengthening support for individuals living with PD.
Sources
Larsson H, Haak M, Hagell P, Hellqvist C. The need for information when being a care partner to a person with Parkinson’s disease. Presented at: World Parkinson Congress (WPC) 2026; Abstract P13.04.