OBJECTIVES: Dry age-related macular degeneration (AMD) causes progressive vision loss. This qualitative study assessed impairment in ability to perform daily activities and humanistic burden associated with dry AMD for patients and caregivers. Patient-reported outcomes are presented elsewhere; here, caregiver perspective is reported.

METHODS: Trained moderators conducted semi-structured telephone interviews with adult, unpaid caregivers of patients with dry AMD (March 2021–June 2023). Caregiver perspectives on patients’ functional impairment in daily activities, and impact of dry AMD on the caregiver’s own health, daily life, quality of life (QoL) and work productivity, were assessed. De-identified interview transcripts were analyzed and results summarized descriptively.

RESULTS: Caregivers (n=20) were spouses/family members of the patient (n=19, 95.0%). Mean (standard deviation [SD]) age was 49.0 (13.0) years and caregiving duration was 2.8 (2.4) years. Caregivers reported that half (50.0%) of patients experienced moderate problems with usual activities over the last month; for 25% (n=5) problems were severe. A mean (SD) of 5.9 (1.3) patient activities were affected. Caregivers spent a mean (SD) of 6.5 (8.2) hours per day providing care. Most (n=15, 75.0%) were employed, working 30.9 (11.7) hours per week (mean [SD]); 26.6% (n=4) reported that caregiving sometimes affected work productivity, and in the last week, 2.8 (4.2) work hours were missed due to caregiving (mean [SD]). The majority (n=15, 75.0%) reported that their other relationships had changed due to time spent caregiving. Caregivers also reported feeling sometimes (n=7, 35.0%) or often (n=4, 20.0%) strained when around their patient. Although general caregiver QoL was “pretty good” (n=9, 45.0%) or “good and bad parts about equal” (n=9, 45.0%), most were "slightly” or “moderately” bothered by emotional problems (n=15, 75.0%).

CONCLUSIONS: These interview data emphasize the broad impact of dry AMD. Caregiving for patients with dry AMD imposes burdens on work productivity, personal relationships, and mental health.