Oregon Health & Science University
Witnessing declining function in a family member with dementia can be discouraging and burdensome for caregivers. Research indicates that African American caregivers tend to manage these challenges better than White caregivers prior to the death of the care-recipients. Why this is the case is not fully understood. Little is known about the meaning these caregivers ascribe to the dementia-related changes they see in their care-recipients. For White caregivers, the changes are often equated with loss, resulting in emotions such as sadness and anger. The literature suggests that African American caregivers may perceive the changes somewhat differently. The purpose of this interpretive phenomenological study was to gain a deeper understanding of the meanings African American family caregivers ascribe to dementia-related changes in their care-recipients. To accomplish this goal, eleven African American caregivers in the Pacific Northwest (PNW) were interviewed twice over a six week period. Analysis of the transcribed vi interviews was based on the hermeneutic circle—an iterative process that involves comparing themes within and across the transcripts. Two important themes emerged from this analysis. First, despite substantial impairments from dementia, the caregivers in this study tended to hang on to care-recipients’ remaining function and personhood. Second, despite these changes, the caregivers felt that their family members with dementia were still here. Interviews with the caregivers revealed that these meanings were shaped by historical, religious, and social forces. Several implications from this study are discussed in this dissertation. First, because race concordance between African American caregivers and health care providers is the PNW is low, the findings from this study can facilitate culturally-appropriate care despite differences. Second, the themes of hanging on and still here provides insight on how these caregivers understand and utilize long term care. Third, due to the fact that African American caregivers tend to have high rates of prolonged grief disorder after the death of family members, these findings can be used to open up sensitive conversations about end-of-life concerns. Finally, theoretical implications that inform future research were also noted. This study provides deeper insight into the African American caregiving experience. Further work that investigates these findings in the context of cross-cultural interventions has the potential to improve the caregiving experience for many caregivers across ethnic and racial boundaries.
School of Nursing
Lindauer, Allison, "The Meaning of Dementia-related Changes in Persons with ADRD : an Interpretive Phenomological Exploration of African American Caregivers' Perceptions" (2014). Scholar Archive. 3480.