The Immigrant Memory Collaborative: A Community-University Partnership to Assess African Immigrant Families' Experiences with Dementia

Research suggests a disparity in the prevalence of dementia, with Black older adults having double the risk compared to their White counterparts. African immigrants are a fast-growing segment of the U.S. Black population, but the dementia care needs and resources of this population are not fully understood. In this paper, we describe the process of working collaboratively with a community partner and project advisory board to conduct a culturally informed project. Specifically, we describe the process of developing culturally informed instruments to collect data on dementia care needs and resources among African immigrants. Working together with a diverse project advisory board, a guide was developed and used to conduct community conversations about experiences with dementia/memory loss. Transcripts from six conversations with 24 total participants were transcribed and analyzed thematically by two independent coders in Nvivo. These qualitative findings were used to inform the development of a survey for quantitative data collection that is currently ongoing. Themes (e.g., cultural attitudes, challenges, and current resources) from the community conversations that informed the survey are described briefly. Despite the challenges of conducting research during a global pandemic, having trusting relationships with a partnering community organization and project advisory board facilitated the successful development of instruments to conduct preliminary dementia care research in an underserved population. We anticipate that survey results will inform interventions that increase education, outreach, and access to dementia care and caregiving resources for this population. It may serve as a model for community-university partnerships for similar public health efforts in dementia as well as other chronic disease contexts.