Long-Distance Family Caregivers’ Perceptions of Burden and Strain Scales Developed for Proximate Family Caregivers

There is a growing number of long-distance family caregivers (LDCs) of older adults with dementia, yet burden and strain scales have not been designed to consider their unique needs, challenges, and experiences. This report draws on open-ended responses from 40 LDCs in a pilot intervention study regarding the Zarit Burden Interview-12 (ZBI-12) and Pearlin’s Family Conflict, Job Caregiving Conflict, and Role Captivity scales. Participants provided insights on the relevance of these scales to the LDC experience and whether they encountered challenges in responding to specific items. Some participants remarked that lower hands-on, everyday caregiving engagement and geographic distance made questions difficult to answer or irrelevant to their experiences. Across scales, most participants stated that the questions captured their experiences as LDCs. Findings suggest that these scales developed for the use of proximate caregivers may be appropriate to use with LDCs, though results merit confirmation in larger studies with more representative samples.