Objective: To characterize social network structure and caregiving among SA families with Parkinsonian dementia (PD) and compare them with White American (WA) caregiving networks.

Background: Caregiver support and social networks influence outcomes in neurodegenerative diseases, including PD. However, caregiving structures within South Asian (SA) communities remain poorly characterized despite the rapid growth of this population in the US.

Method: Semi-structured interviews (IV) were conducted with dyads of individuals with dementia and care partners to explore caregiving dynamics, cultural context, and social networks. Transcripts were coded using iterative thematic analysis to identify emergent themes. Qualitative IV included 5 SA and 7 WA dyads. Most individuals had Parkinsonian disorders (Parkinson’s disease dementia, dementia with Lewy bodies, and vascular Parkinsonism); one had Alzheimer’s disease. Care partners completed the Dementia Prevention Survey to assess knowledge and attitudes on dementia risk reduction. Recruitment included 10 SA and 10 WA care partners. Survey analysis is underway.

Results: Qualitative analysis identified five domains: network structure, caregiving role, communication pattern, illness disclosure, and cultural meaning. SA caregiving networks were dense and family-centered, with adult children often serving as central caregivers and responsibilities shared across the extended family. Despite geographic separation, the family remained involved via frequent digital communication. Caregiving was framed as a familial duty embedded in cultural and spiritual traditions. In contrast, WA caregiving networks often demonstrated network contraction, with caregiving concentrated in spouses and fewer extended supports. Care partners described role strain, identity shifts, and reduced social engagement as the disease progressed.

Conclusion: Caregiving for PD within SA families appears embedded in dense family networks that may reduce caregiver isolation but reinforce strong cultural caregiving expectations. In contrast, WA caregiving networks more often demonstrate contraction and caregiver isolation. These findings emphasize the importance of culturally tailored caregiver education and support strategies within movement disorder clinics. Results from the questionnaire component will be presented at the meeting.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/social-network-structure-and-caregiving-experiences-in-south-asian-families-living-with-dementia-associated-with-parkinsonian-disorders/