Objective: To explore perspectives of care partners (CPs) of people with Parkinson’s Disease (PwP), compare CP experiences before and after the COVID-19 pandemic, and assess the impact of culture and informal/formal resources on caregiving roles.

Background: Parkinson’s Disease (PD) necessitates long-term caregiving from individuals in close social proximity to PwP. Care partners, often spouses or children of PwP, provide crucial medical, psychological, and social support for PwP. The Care Partner Lounge (CPL) offered sessions to CPs during the 6th World Parkinson Congress (WPC) in Barcelona, Spain in 2023. CPL focus groups explored the perspectives and experiences of CPs from around the world with a protocol consistent with CPL groups at the 5th WPC (Kyoto, Japan in 2019), focusing on CP support needs, CP recommendations, and effects of the COVID-19 pandemic.

Method: CPs who registered for the 6th WPC were invited to participate in CPL focus groups. English-speaking CPs were divided equally into two focus groups based on demographics; Spanish-speaking CPs were assigned to a third group. During the CPL, trained facilitators guided semi-structured group discussions with six open-ended standardized questions; scribes documented CP responses. Two or more reviewers performed thematic analysis of scribe notes. Themes were compared with findings from the 5th WPC CPL. Follow-up surveys were distributed to participants six months after the 5th and 6th WPCs.

Results: Twenty-nine CPs participated in CPL focus groups at the 6th WPC. Participants represented eight countries; 26 participants were English-speaking and 3 were Spanish-speaking. CP relationships to PwP were spouse (n=25), domestic partner (n=2), adult child (n=1), and unspecified (n=1). Length of caregiving spanned 1-18 years (median=8, IQR=4-13). Significant themes included (1) relationship growth as a satisfying aspect of caregiving, (2) PwP symptom management as a CP challenge, (3) exercise as a coping strategy for CPs, and (4) limited access to resources during the COVID-19 pandemic. Multiple themes were consistent with those identified in the 5th WPC CPL focus group analysis.

Conclusion: Many experiences, both satisfying and challenging, are shared among an international sample of CPs of PwPs. Multiple key reflections and foundational aspects of caregiving have remained consistent before and after the COVID-19 pandemic.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/international-perspectives-of-care-partners-for-people-with-parkinsons-disease/