Impact of visual impairment on use of caregiving by individuals with age-related macular degeneration

Background: To assess the patient-reported use of caregiving among individuals with age-related macular degeneration (AMD) and evaluate the impact of visual impairment level on this use. Methods: A survey including the AMD Health and Impact Questionnaire and the Daily Living Tasks Dependent on Vision Questionnaire (DLTV) was mailed to members of the Macular Degeneration Partnership. The study was approved by an institutional review board, and respondents provided consent before participating. Responses were analyzed by estimated visual acuity determined by scores from the DLTV. Deidentified data were analyzed using SAS Version 8.2 (SAS Institute, Cary, NC). Results: Of 803 respondents, 56% were male, and the mean age was 73 years. Use of paid and unpaid help significantly increased as visual acuity decreased. Using a national average for caregiver time, annual costs for caregiving ranged from $225 to $47,086 depending on visual acuity. Conclusion: There are substantial differences in caregiver support with increased AMD severity. Delaying progression of AMD could result in considerable cost savings.