Culture, Medicine and Psychiatry

, Volume 23, Issue 4, pp 501-529

First online:

Take up the Caregiver's Burden: Stories of Care for Urban African American Elders with Dementia

  • Kenneth FoxAffiliated withDepartment of Social Medicine, Harvard Medical School
  • , Sue LevkoffAffiliated withDepartment of Social Medicine, Harvard Medical School
  • , W. Ladson HintonAffiliated withDepartment of Psychiatry, UC Davis Medical Center

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This pilot study uses an anthropological gaze to analyze transcripts of extended in-home interviews among a set of ten caregivers of African-American elders with dementia. How are race and ethnicity made to matter in the recognition of, the meaning-making around and the responses to dementing illness among a sample of African-American caregivers? The essay contrasts prevailing cultural representations of African-American caregiver burden with caregiver interview data. What we find is that current constructs which consistently demonstrate “lesser burden” among African-American caregivers compared with Whites may not adequately capture these caregivers' experiences. Interpretations of experiences, meanings of “burden” and the logic of symptoms in the illness narratives generated by these African-American caregivers of elders with dementia require attention to the embodiment of large scale sociopolitical and historical forces like residential, educational and occupational segregation, institutional racism, and economic exploitation over the life course.