KENNETH FOX, W. LADSON HINTON and SUE LEVKOFF
TAKE UP THE CAREGIVER’S BURDEN: STORIES OF CARE FOR
URBAN AFRICAN AMERICAN ELDERS WITH DEMENTIA
ABSTRACT. 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 cur-
rent constructs which consistently demonstrate “lesser burden” among African-American
caregivers compared with Whites may not adequately capture these caregivers’ experi-
ences. 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.
INTRODUCTION
This essay is an analytical review of transcripts of extended in-home
interviews with a sample of ten caregivers of non-institutionalized African-
American elders with dementia. We aim to interpret a set of retrospective
accounts of illness and caregiving experience with one central question in
mind: How are race and ethnicity
1
made to matter in the recognition of, the
meaning-making around, and the responses to dementing illnesses among
a sample of self-identified African-American caregivers?
This essay also contrasts prevailing representations found in some
social gerontology writing about African-American caregivers with our
qualitative data.
2
The descriptive features of this report aim to contribute
to what is known about how some African-Americans make sense of both
dementing illness among the elderly and the experience of caregiving
for an afflicted relative. These caregiver accounts will not reveal sets of
behavioral determinants or become the raw data for multivariate models of
caregiver stress or burden. Rather, this paper explores in a small sample of
African-American caregivers in Boston, the meaningful relations between
their experiences of and positions within everyday local social worlds and
Culture, Medicine and Psychiatry 23: 501–529, 1999.
© 1999 Kluwer Academic Publishers. Printed in the Netherlands.