Samantha Pantelic
Research Mentor: Sarah Patterson
Mentor Department: Institute of Social Research, Other
Author(s): Samantha Pantelic, Sarah Patterson
Session: Session 1 (9:00 AM – 9:50 AM)
Presentation Type:
Abstract
In the United States, unpaid family caregiving—which consists of immediate, extended, and chosen family and friends—is seen as the default and preferred form of care for older adults with Alzheimer’s and Related Dementias (ADRD). For many, the transition of becoming a caregiver is sudden and unexpected, and caregivers increasingly report feeling like they do not have a choice. Previous research tends to focus on caregiving within “nuclear†families (i.e., husband, wife, and biological and stepchildren) and frames one’s “choice†to become a caregiver as a static, dichotomous decision. Ultimately, this research fails to accurately represent diverse caregiving populations and measure their true experiences of choice. To address these gaps, we recruited a diverse group of caregivers (N = 17) for older adults (i.e., 65 years or older) with and without ADRD and conducted two rounds of cognitive interviews with surveys designed to measure caregiving networks and “choice.†Results show that participants may have difficulty reporting feelings of choice when response options are limited to either “yes†or “no.†Instead, many participants responded “yes and no,†influenced by one’s availability, caregiving network size, financial security, culture, and more. Future surveys and research should evaluate “choice†as a complex and dynamic process, beyond a simple yes or no question. These survey items may be used in policy development and time-constrained clinical settings to evaluate the needs and caregiving networks of older adults.
