Objectives: Geographic atrophy (GA) is a leading cause of blindness in the elderly; however, there is limited research on the GA caregiver experience. We conducted a qualitative study of the humanistic and financial burden on unpaid GA caregivers to characterize their perspectives on caring for someone with GA. Qualitative study results guided the design of a global GA caregiver survey launched in 2021 and are being presented for the first time here.

Methods: Semi-structured interviews were conducted with 17 purposively sampled caregivers in the US (n=11), UK (n=4), and Australia (n=2). Inclusion criteria included age > 18 years, identification as primary caregiver of a patient diagnosed with GA, and English fluency. Paid caregivers were excluded. Consensus-based coding and thematic analysis, using a primarily inductive approach, was conducted using ATLAS.ti. Thematic saturation was assessed in 4 waves and achieved in wave 3.

Results: Caregivers reported providing the following types of support: emotional care; coordinating care; GA management; managing finances and affairs; driving; shopping; assisting with reading, household tasks, and hygiene. Caregivers helped patients manage GA by driving them to eye appointments and researching products and services. Caregivers’ humanistic burden concerns included: worries about the lack of treatment; impact of caregiving on their relationship with the patient and other family members; time spent on care; interference of caregiving in their own daily activities; the patient’s emotions. Top worries shared by caregivers were the patient becoming increasingly dependent on them, the patient’s safety, disease progression, and quality of life. Financial worries included the cost of products and services, such as paid care, for the vision-impaired.

Conclusion: There is an unmet need for social and mental health support for caregivers. Documentation of this fills a gap in the literature. Further research is needed to understand the humanistic and financial burden of GA on caregivers.