Abstract
OBJECTIVES: Research often focuses on persons who are or have been caregivers to a person with dementia. Little is known about stigma reactions in persons who expect to care for a person with Alzheimer's disease (AD). Understanding these beliefs may help guide clinical discussions with family members of persons with AD, particularly those diagnosed in the early stages. METHODS: A sample of 3,527 adults was randomized to read a vignette describing a fictional person with either a positive or a negative AD biomarker test result. Bivariate and multivariable analyses examined associations between AD caregiver status (expected and experienced) and responses on a modified Family Stigma in Alzheimer's Disease Scale (FS-ADS). RESULTS: About 31% (n = 1,090) of participants expected to be a caregiver for a person with AD, and most (63%) had previously been a caregiver. Controlling for differences in caregiving experience and other potential confounders, participants expecting (vs. not) to be AD caregivers reported higher willingness to support, more pity, and fewer negative aesthetic attributions than participants with (vs. without) AD caregiving experience (all p < .05). DISCUSSION: Caregiving experience is a strong predictor of a person's expectations of becoming one in the future, which runs counter to observed caregiving patterns, suggesting that for most people, becoming a caregiver is unexpected. Helping individuals set more accurate expectations for future caregiving roles is essential to support planning and preparation. Specific findings may inform the content of support and education programs that could accompany disclosure of AD biomarkers and early diagnosis.