Gender differences in informal caregiving costs and burden in Alzheimer disease: a multinational cross-sectional...

Informal caregiving is a major driver of the societal impact of Alzheimer's disease (AD) and has important implications for caregiver health, workforce participation, and gender equity. While prior research indicates that female informal caregivers of people living with AD experience greater physical and psychological burden than their male counterparts, most studies are limited to single-country contexts, and little is known about gender differences in nonmedical societal costs. To address these gaps, we examined caregiver-gender differences in informal care costs and caregiver burden associated with AD across seven countries.

We conducted a cross-sectional analysis of harmonized baseline data from community-dwelling individuals with clinically diagnosed AD and their informal caregivers in four cohort studies: GERAS-EU (France, Germany, United Kingdom), GERAS-II (Italy, Spain), GERAS-JP (Japan), and GERAS-US (United States), accessed via the AD Data Initiative's AD Workbench. Monthly informal care costs (e.g., costs of caregiver time and missing work) were derived using the Resource Utilization in Dementia Questionnaire and quantified in US dollars. Caregiver burden was assessed using the Zarit Burden Interview (ZBI) questionnaire (total score: 0-88). We estimated caregiver-gender differences in informal care costs using two-part models (logistic regression followed by gamma regression) and differences in ZBI using linear regression. All models were adjusted for care recipient and caregiver characteristics and country. Secondary analyses stratified the models by disease severity, caregiver employment status, and country.

Among 3,318 caregivers (66.2% women; mean age 63.1 ± 13.8 years), female caregivers had higher monthly informal care costs than male caregivers (adjusted mean difference: 191.8 USD; 95% CI: 27.4 to 356.1; P=.02) and greater burden (adjusted mean difference in ZBI: 4.0 points; 95% CI: 2.6 to 5.3; P<.001). Gender-disparity patterns were significant or directionally consistent in most stratified analyses and were also consistently observed in sensitivity analyses using an imputed dataset.

Across seven countries, women providing informal care for people living with AD experienced higher costs and greater burden than men, highlighting gender-disparity in unpaid care. These findings support public health and policy efforts to strengthen caregiver supports (e.g., workplace accommodations and tailored caregiver support programs) to reduce burden and productivity loss, particularly for women.