RECRUITING THE ULTRA-INVISIBLE: COMMUNITY RECOMMENDATIONS FOR FORMER DEMENTIA CAREGIVER RECRUITMENT

Abstract

Abstract Bereaved dementia caregivers often refer to themselves as “Ultra-Invisible” (contrasting with caregivers’ “Invisibility”). We report on a series of open-ended discussions with the “Supporting Dementia Caregivers After Death” community advisory board (CAB) about how best to recruit bereaved dementia caregivers for research. The 12-member CAB includes current and former caregivers of PLWD due to early- and normal-onset Alzheimer’s, Lewy body, and Parkinson’s, an Alzheimer’s Association senior program manager, the Indian Health Board of Minneapolis Spiritual Health leader, the Engaging communities of Hispanics/Latinos for Aging Research Network leader, and a Federally Qualified Healthcare Center Equity Director. Strategies included: partnering with local religious institutions who may be primary source of bereavement services across cultures, multiple survey formats (e.g., recruiting Latino caregivers by phone; written surveys for Indians on rural reservations with limited phone/internet access). 3) Broadened age group considerations (e.g., one African American CAB-member’s young children contribute meaningfully to caregiving).