take up the caregiver's burden: stories of care for urban african american elders with dementia

KENNETH FOX, W. LADSON HINTON and SUE LEVKOFF

TAKE UP THE CAREGIVER’S BURDEN: STORIES OF CARE FORURBAN AFRICAN AMERICAN ELDERS WITH DEMENTIA

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

INTRODUCTION

This essay is an analytical review of transcripts of extended in-homeinterviews with a sample of ten caregivers of non-institutionalized African-American elders with dementia. We aim to interpret a set of retrospectiveaccounts of illness and caregiving experience with one central question inmind: How are race and ethnicity1 made to matter in the recognition of, themeaning-making around, and the responses to dementing illnesses amonga sample of self-identified African-American caregivers?

This essay also contrasts prevailing representations found in somesocial gerontology writing about African-American caregivers with ourqualitative data.2 The descriptive features of this report aim to contributeto what is known about how some African-Americans make sense of bothdementing illness among the elderly and the experience of caregivingfor an afflicted relative. These caregiver accounts will not reveal sets ofbehavioral determinants or become the raw data for multivariate models ofcaregiver stress or burden. Rather, this paper explores in a small sample ofAfrican-American caregivers in Boston, the meaningful relations betweentheir experiences of and positions within everyday local social worlds and

Culture, Medicine and Psychiatry23: 501–529, 1999.© 1999Kluwer Academic Publishers. Printed in the Netherlands.

502 KENNETH FOX ET AL.

the sense they make of their burdens.3 We listen to caregivers’ stories tounderstand more clearly the meaningful connections between historicalexperiences of racial oppression,4 current experiences of caregiving, andcultural representations of caregiver burden.

This attempt at interpretation of emergent thematic issues within retro-spective accounts of caregiving happens in the light of the library. Ananthropological gaze5 is used to explore how well some caregivers’accounts of their experiences fit into the frame of a social gerontologyliterature that comments on group differences in dementia symptom recog-nition, health/help-seeking determinants and behaviors, and caregiverburden. We wonder, “How do large scale social forces like institutionalracism and racial and social class oppression become embodied by peoplewho become ill (or care for ill elders)?6 How do social forces ‘get underthe skin’ through symbolic processes in the aging process and across tolife-span of persons from racial and ethnic minority groups?”

The theoretical problems with health research that represents “culture”as a general characterization of group traits, or as limited to the beliefs,perceptions and attitudes of patients, are considerable (Good 1994, 1986).However, these theoretical problems are beyond the focus of this essay.What is really at issue here are the specific characterizations (or culturalrepresentations) of burden among African-American caregivers of elderswith dementia that prevail in a great deal of writing in comparative socialgerontology. To what extent do the cultural representations that emergefrom some of this writing help (or hinder) scholars as they study and inter-pret the experience of caregiver burden in a sample of African-Americancaregiver accounts?

BACKGROUND

How Caregiving Matters

The kinds and amounts of caregiving are tightly bound with the socialcourse of dementing illness (Brody 1989; Connell and Gibson 1997).The problem of caregiving looms large as investigators attempt to makesense of differential patterns of “excess disability”7 among elders withdementing disorders. In a health care marketplace focused on cost contain-ment, the currency insights into the forces that drive care into formal (i.e.,paid)8 institutional settings rather than confine it to informal (i.e., unpaid)settings is highly valued. Intellectual attention to these forces is the firststep in delivering on one of the great promises of a marketplace domi-nated by managed care. In theory, managed care aims to provide the right

CARE FOR URBAN AFRICAN-AMERICAN ELDERS WITH DEMENTIA 503

amount – neither too much nor too little – of the right type of care ina rational, cost effective, and comprehensive way. Either overutilizationor underutilization of services may result in poor outcomes like “excessdisability” or premature use of expensive formal institutional care in waysthat exacerbate inequity and suffering.

Some have argued that caregiver context (conventionally limited tocaregiver’s relationship to the patient, residence arrangements, and amountof informal social support) is an important factor in caregiving function(Gwyther and George 1986; Lawton et al. 1992). In some social geron-tology writing, scholars wonder whether different attitudes, beliefs andvalues across different ethnic groups enable or constrain the quantity orquality of caregiving (Sokolovsky 1990). Ethnic-specific attitudes, beliefsand values about dementia and about caregiving for people with dementiahave been hypothesized widely but less often empirically studied insystematic ways (Valle 1989; Cuellar and Weeks 1980; Lawton et al. 1992;Connell and Gibson 1997).

A great deal is at stake in the study of these issues among African-Americans. Epidemiologists have shown that in the aggregate, African-Americans have poorer health status and shorter life expectancies thannon-Hispanic Whites (NCHS 1993; US Dept of Health and HumanServices 1985). In comparisons of health status by racial group, even whenincome and education are controlled, African-Americans have poorerhealth status (by self-assessment) than White Americans (Williams 1996).The North American racial health disparities literature shows that adjustingracial differences in health for socioeconomic status often significantlydecreases and sometimes,though not always, eliminates these differences(Williams 1996; Williams and Collins 1995). Moreover, within any givenSES category, African-Americans often have higher rates of disease anddeath (Williams, Lavizzo-Mourey and Warren 1994).However, the factremains that Black poverty rates are almost triple white poverty rates(Danziger and Gottschalk 1995). Many scholars demonstrate enduringracial differences in access to and quality of care across a vast spectrumof health services measures (Geiger 1997; Watson 1994). Some scholarshave explored how institutions act to exclude racial and ethnic minorityelders from services and resources (Manuel 1982; S. Wallace 1995, 1990;R. Wallace 1988; D. Wallace and R. Wallace 1998). Asa racial group inthe structural context of racialized inequalities, African-Americans sufferhigher age-adjusted morbidity and mortality across a wide range of indi-cators including some important types of dementia (Nickens 1995; Folstein1985). There is also some evidence that African-American elderly presentto medical attention at more advanced stages of the dementia illness course


and also have lower rates of institutionalization than non-Hispanic Whites(Advisory Panel on Alzheimer’s Disease 1992; Belgrave et al. 1993).

Amidst these dramatic structural realities of racial inequality in health,a great deal of comparative social gerontology has focused on coping,stress, help-seeking and burden among African-American caregivers. Oneof the classic, unsettled questions in social gerontology is “How doesAfrican-American culture mediate the experience of informal caregiving inways that reproduce or exacerbate dramatic health status, health outcomeand health care disparities between elderly Blacks and elderly Whites?”

Social Gerontology on Caregivers in Black and White

An extensive literature on caregiver appraisal, stress, burden and copinghas developed in social gerontology over the past 20 years. Though muchof the literature on caregivers is dominated by studies of middle classwhites (Schulz et al. 1995), a number of comparative studies exist andcontribute to the field of social gerontology (e.g. Valle 1989; Wykleand Segall 1991; Lawton et al. 1992; Wallace 1995; Morycz 1987).Sokolovsky (1990) describes two major (and sometimes competing)theoretical perspectives in the comparative literature. The first perspectiveidentifies the ways in which racial and ethnic group identities and relationsplace people at risk for discrimination and exclusion. Risk exposures areproduced primarily by position within a “color-coded” structural context;in this way, social identities within particular social structural contextsgenerate health outcomes. A second theoretical perspective in the compar-ative literature, “ethnic compensation,” focuses on the ways in whichracial or ethnic identities serve as strengths, benefits or otherwise positiveresources that produce or support health, or protect people from their harmdespite their afflictions (Cool 1987).

The first perspective shaped an early central problem of much ofcomparative social gerontology called the “double-jeopardy” hypothesis(Jackson 1985). The idea of double jeopardy was created to label theprocesses by which tragic experiences suffered by African-Americans overa lifetime of racial discrimination clustered and combined with the biolog-ical/physiological realities of aging to generate Black-White disparities inthe burdens of disease and death among elderly populations. The 1964National Urban League publication,Double Jeopardy – The Older Negroin America Today, protested the socially subordinate status of elderlyAfrican-Americans caused by the cumulative forces of “a whole lifetimeof economic and social indignities” in the context of American racism anddiscrimination. Originally, double-jeopardy was thought of as a point ofdeparture for scholarship in comparative social gerontology.


However, since that time, much of social gerontology has moved alongother trajectories. Many question whether double jeopardy exists at all(Jackson et al. 1990). Others write about the instability of the concept’sempirical basis. Some say that if the hypothesis of double jeopardywere valid, Black-White disparities in socioeconomic status, morbidity,disability and mortality would actuallyincrease with increasing age(Jackson 1985). Whether all these criteria for validity have been demon-strated adequately is somewhat controversial (Jackson 1985). Over theyears, the concept was expanded to include other “minority groups” (withdifferent social, cultural and historical experiences in the US). However, asthe indicators of double jeopardy became ever more narrow, specific andtechnical, the original idea was lost and is now to a significant extent aban-doned (Ferraro 1987; Belgrave et al. 1993). As much of social gerontologyhas moved away from this original interpretive framework, the discipline’sonce sharp focus on historical and political contexts has been blurred.

Nevertheless, basic to the field of social gerontology are studies thatcompare racial groups – particularly Blacks and Whites (e.g. Wykleand Segall 1991; Lawton et al. 1992; Morycz 1987; Hinrichsen andRamirez 1992; Haley et al. 1995; Zarit et al. 1980). However, like somany other publications in the biomedical and health services researchliteratures, many of these texts reproduce a pervasive folk theory inwhich race is a “master concept” – a preeminent, analytical categorythat “trumps” all other categories. In many texts on health and healthcare, including some writing in gerontology, races are written about asdistinct, universal, “natural,” scientifically valid, self-evident, and essen-tially biological categories.9 A critical problem in the “racial/ethniccompensation” strand of social gerontology is that too little is made ofhow different groups actually talk about and interpret the meanings of care-giving in the context of other difficulties in their lives.10 One consequenceof this lapse is that writers too often conflate “racial/ethnic difference” withsocial structural inequality.11

Research in medical anthropology may unknowingly offer social geron-tologists “cultural” explanations for differences in patterns of caregiving.Miller et al. (1995), for example, try to make sense of findings from acomplex quantitative comparative study of black and white family care-givers of elders with dementing illness conducted in the northern midwest.The data show that African-American caregivers report lower mean levelsof distress, before and after controlling for differences in sociodemo-graphic, stressor and resource variables. Noting that scholars “assumecultural factors as the residual explanation of unexplained variance,” theauthors are left to ponder what “unique cultural meanings” account for


their findings of lesser distress among African-American caregivers incomparison to White caregivers with an impaired spouse’s behavior prob-lems in this study. One explanation, they suggest, is that black caregiversmay perceive the hardship of caregiving as less stressful because they have“coped with a lifetime of continuous struggle” (S380–81). For anotherexplanation, they turn to the work of a medical anthropologist:

An anthropological study of rural Blacks (Gaines 1989) suggests that the ability of cogni-tively impaired persons to sustain emotional relationships longer than other abilities maybe more satisfying for persons who value emotional expressiveness more than intellectualabilities (p. S381).

Gaines’ original article makes a claim about what he views as regional,Southern cultural influences on the interpretation and care-seeking fordementia-related symptoms: “In such a tradition, there is less emphasis oncognitive clarity and on displays of intellectual mastery. Rather, culturalemphasis is placed on proper affective relationships and on the full-fillment of proper role obligations” (p. 36). Gaines goes on to suggestthat this cultural orientation, which also includes folk illness categoriessuch as “worriation” and “falling out,” may result in delayed recogni-tion, formal care-seeking, and burden associated with dementia-relatedsymptoms.12 Furthermore, he suggests that this cultural orientation isshared by Southern blacks and whites as well as “Mediterranean ethnics.”

As in the discussion section of Miller et al.’s paper, however, Gaines’“cultural” interpretation is most often cited in the social gerontology liter-ature as a possible explanation for “racial” differences in caregiver burdenor services utilization.13 In fact, the purpose of Gaines’ paper was tocritique a racial classification (i.e. Black/White) and explicitly focuses on“Southern” culture which he purports to be a cultural tradition shared byblacks and whites. Thus, it is ironic that Gaines’ line of argument is appro-priated and cited to suggest black/white differences or a racial tradition inthe caregiving experience. We suggest that when Gaines’ line of argumentis appropriated and used in this way (i.e. to interpret Black-White differ-ences in the caregiving exeprience), it runs the risk of perpetuating racialstereotyping in unintended and potentially damaging ways. Furthermore,and as emphasized in other parts of this paper, a narrow focus on “cultural”explanations for racial differences in caregiver burden or utilization mayalso deflect attention from important sources and consequences of struc-tural inequalities faced by Black American families caring for someonewith dementia.

Literature in social gerontology helps to create a distinctive image of“the African-American caregiver” of the demented minority elder. TheAfrican-American caregiver is often portrayed as one who, perhaps for


“cultural reasons,” perceives less burden (Lawton et al. 1992; Hinrichsenand Ramirez 1992; Mui 1992; Hartung 1993) and suffers less depres-sion than the White caregiver (Connell and Gibson 1997; Lawton etal. 1992; Haley et al. 1995).14 Lesser caregiver burden may “explain”African-American elders’ delayed presentation to health and social serviceinstitutions (Advisory Panel on Alzheimer’s Disease 1992). In addition, theimportance of the church for African-American elders and care takers incoping with illnesses is highly attended in the social gerontology literature.The greater religiosity of African-Americans (compared with Whites) is acore feature of prevailing representations of African-American caregiverexperience (Taylor 1993).

An enduring symbolic figure emerges from some of the comparativesocial gerontology on caregivers.15 She is an adult daughter, who contrastswith her white counterpart in the following ways: 1) she is of lower SES,2) she perceives more unmet needs but is less likely to report that sheis overwhelmed, 3) she does less “active” management of the elder, 4)she is more inclined to depend on prayer or the Church for help, 5) shereports less caregiver burden, 6) she relies on an extended kin networkwhich functions to share and ameliorate the caregiving burden, and 7)she is more reluctant to and less likely to institutionalize the elder. Insum, as Lawton et al. pithily conclude: “There is an idealized picture ofcaregiving among blacks: Caregiving is unconditional, value-congruent,satisfying and less taxing for blacks compared with whites.” The authorspoint out that the racial differences in perceived burden may be an artifactof inadequate understanding of “cultural moderating factors” [emphasisadded] (1992, p. S163). Many thus wonder whether “cultural” reasonsaccount for Blacks’ “underutilization” of professional health and socialservices compared with “majority” or White populations.

However, some of the major contributors to the literature on ethniccompensation in social gerontology have rethought the positioning of theirwork in the context of dramatic and enduring structural inequalities. Somescholars have reconsidered the relations between institutions, inequalities,experience and cultural representations: “An overidealization of ethnicsubcultures has lead to a policy error which places too much emphasis onthe ethnic family and informal supports as the savior of the ethnic elderly”(Sokolovsky 1990, p. 201). In the light of these writings in comparativesocial gerontology and anthropology, we now turn to our interview dataand interpretations.


METHODS

This article is based on transcripts of extended in-home interview datagathered from a convenience sample of ten African-American caregiversof elders with dementia. Selection criteria are described in detail else-where in this volume. Briefly, families caring for a demented elder wereidentified as potential study participants through our research team’scontacts with urban Boston social service agencies, nursing homes, andhospital/neighborhood health clinics. Informed consent was obtained andmembers of the Exploratory Center’s research team conducted all of theinterviews. These encounters lasted between two and five hours and inter-views were tape-recorded and then transcribed by Center staff. Interviewswere structured only by the use of an interview guide which outlineddomains of interest – current social context, description of illness onsetand course, interpretations of illness and symptoms, day-to-day care-giving activities, experiences and activities associated with care-giving,patterns of care-seeking, family decision-making, and ideals of aging.Interviewers were given considerable latitude to explore these domains andto develop themes that emerged during the course of the interview. Morethan 700 pages of transcripts from 10 African-American families were readmultiple times by the authors, then analyzed and coded by hand for emer-gent themes which illuminate the social course of dementia caregivers’experiences among the study subjects.

CAREGIVER ACCOUNTS

Speaking of Social Structural Contexts

The caregiver accounts which are the focus of this review share strikingfamily resemblances. First, these narratives bear witness to lives of work.To a very great extent, the caregivers – these sons and daughters of aservant class – learned how to do elder care through work as home healthaides or nursing home employees. The caregivers had work histories in avariety of jobs, including home health aide, launderer, meat cutter, nursinghome aide, factory line worker, hospital ward secretary, janitor, caterer,truck rental clerk, homemaker for the handicapped, pharmacist, and foodservice worker at daycare center. One caregiver, a war veteran, learned thetrade of photoengraving, but was never employed in this work on returnhome because of racial discrimination in the trade union. Thus, to a largeextent these family histories reveal lifetimes of work in a context of whatsome have referred to as “occupational apartheid” (Steinberg 1995): taking


notes and orders, washing clothes and feet, clipping nails, wiping back-sides, feeding and dressing other people’s parents and children, brushinghair and scrubbing teeth and toilets, answering phones for the boss.

Of course, this kind of social structural positioning is not the familystory of all those who identify themselves as African-American, or evenall of the caregivers in our sample. And certainly, members of other racialand ethnic groups have also endured the burdens of discrimination, exclu-sion and exploitation. However, the legacy and urgency of racial and classoppression suffered by many of these African-American families is norandom outlying accident of history – personal or collective. Moreover,structural realities of racial exclusion, exploitation and terror generate agreat deal of meaning-making – including, perhaps, the world of meaningsaround the experience of caregiver burden.

Second, many of these family histories follow a typical pattern. Theirstories often begin in the South. Now elderly men and women withdementia were once young and energetic workers who took part in thegreat migration of African-Americans to the North from 1900–1930’s,“the largest movement of black bodies since slavery” (Gates 1993, p. 17).Though not described in these interviews, historical records documentthe circumstances under which many migrated. On segregated trains andbuses, these workers headed North to urban centers like Chicago, NewYork, St. Louis and to Boston. They often left children or spouses behind,with a promise to send for them when they earned and saved enough andgot “set up” in the North. They left behind Southern worlds of exploitation,terror and suffering only to face pervasive residential segregation and laborexploitation characteristic of work in the low wage, unskilled and unstableservice sector to which they were restricted. Though these people facedracial discrimination in employment and were banned from unions, forthem, life was work – and work was servitude.

A Case: The Burden of Memory

Mrs. Taylor is the primary caregiver and sole decision maker for her 84-year-old mother, Mrs. Simon, who has Alzheimer’s disease. The familynoticed things over a couple of years: she became less interested in readingand discussing things and then she started to get lost and confused as shewalked to her favorite places in the neighborhood. She was diagnosed afterpresenting to an emergency room after a fall. Soon after, Mrs. Simon’s sondied in a residential fire and her condition worsened precipitously. Untilthat time she’d lived independently, but then she began to wander far fromhome and often left the stove on in her kitchen. So Mrs. Simon was movedinto her daughter’s small apartment. Her daughter, Mrs. Taylor, took an


“early retirement” from work as a home health aide, in order to care formother. Her husband, after a layoff from a factory job, supports the familyas a “meat cutter.” Their income is less than $10,000 per year.

Widowed with three young children (her husband died in a constructionaccident), Mrs. Simon came to Boston in the late 1930’s, and left her threeyoung children in a small town in Alabama in the care of her sisters. Hersisters joined her, one by one, once she was settled. Then Mrs. Simon sentfor her children, who had been left down South with other relatives. Mrs.Taylor was 16 when she came to Boston. Her older brother is not involvedin his mother’s care: “It’s like I haven’t got a brother,” she says. The rest ofthe family (Mrs. Taylor’s nine nieces and nephews) just doesn’t understandand doesn’t come around: “. . . Its been so hard on me because there’s no,none of the family.. . . I don’t know, today, you know you’re lucky if you’vegot close family that, you know, comes to your needs.” She is thankful thatshe got a place for her mother at the neighborhood senior daycare center.She continues:

Right after my [younger] brother passed, that’s when I noticed, you know, things. [Mother]used to be into politics. She used to do a lot of reading. And then her eyes got kind ofbad. She couldn’t read as much. I had her glasses exchanged and all, but she don’t botherabout her reading too much. She changed from the mother that I – you know. She’s donestrange things to me, you know strange. I don’t know how to put it. The way she used totalk. She used to talk and discuss things. I mean, how can I put it? She would speak radicalsometimes. And I knew that wasn’t right, that wasn’t like her, you know.

We can imagine that the elders in these accounts, full of pride and hope,watched children and grandchildren take advantage of many opportuni-ties they themselves never had (like joining integrated armed services,receiving formal primary and secondary schooling, and even sometimescollege educations). However, they also watched family and friends dieof preventable diseases, of accidents and violence. They watched theirfamilies struggle to make ends meet and suffer from ongoing discrimina-tion and exclusion despite gains in many areas. They empathized withsons and daughters who, severely limited in resources and opportunitiesfor adequate housing, education, employment and health care, fell danger-ously far from their potentials. One example is the son who, along withhis wife, cares for his mother with Alzheimer’s. After serving his countryduring WW II, he drifted over a lifetime through an assortment of lowwage service. His wife, like so many other caregivers, works long hours inthe low paying service sector as a homemaker for the handicapped.

The symbolic figure of the African-American caregiver in a great dealof writing in social gerontology as an unassuming, unconditionally loyal,self-satisfied, less burdened and less taxed servant in contrast to the proto-typical “white” caregiver generates a powerful myth in the context of


American racism. However, the experiences of racialized subordinationwithin a political economy, so central to an understanding of these care-giver/family life stories, are difficult to find represented in much of thecomparative literature in social gerontology on caregiver burden.

The fact is that people in these accounts know how to serve because thestructures of opportunity in which they exist give them ample experiencein this type of work. However, the image of their slavish adherence to a“caregiver ideology” with which this grueling work is “congruent” clasheswith the accounts collected here. One caregiver, Mrs. Gordon, a formerhome health aide in a Boston nursing home, and a daughter with threebrothers and four adult daughters of her own, recounts how she came toher role as her mother’s caregiver:

I worked nights. I had the spare room . . . I didn’t know any of my grands [grandmothers orgrandfathers]. So I really didn’t know that much about older people until I started workingin the nursing home. I thank God for that experience, you know the training of workingthere. . . . That [caregiving] just fell to my hand to do. I had another aunt who sometimes,she just go out of her mind, andit fell to my hand just the same way. You know, she, shejust had no one.

Listen to the words of another caregiver, Mr. Jones, a 78-year-old formerhome health aide and construction worker. Mr. Jones cares for his wife offorty years now struck by Alzheimer’s disease. One finds no male/femaleantipathy in this African-American caregiver’s story. Though he is amember of an extended family he alone is responsible for her day-to-day care – bathing, dressing, medicating, cooking, feeding, laundering andironing:

Well I’m, might say I’m locked in jail. I can’t go nowhere. And the only outlet that I haveis when she goes to [the senior center]. She only goes four days a week. And they put heron a standby, which means she’s not going to go. But he said he will call me back at 8o’clock and get a ride for her. I know they don’t have no rides for her.

The point is that neither Mrs. Gordon nor Mr. Jones appears to identifyherself/himself as a fulfilled and self-satisfied African-American care-giver unconditionally adherent to a value-congruent “caregiving ideology”which somehow lessons the experience of burdens he bears on a dailybasis. The literature often does not help us to understand what thesecaregivers say about their experiences of burden.

Extended Families: Caregiver Networks?

Much has been made of the African-American extended family in somesocial gerontology writing. The extended family is a lifelong, kinship-based exchange network with elastic social boundaries (not necessarily


drawn along “blood lines”) that links several domestic units. Traditionally,the extended family is believed to offer mutual aid and support. It func-tions to help people cope with the stresses in their lives. Psychologist J.White (White 1991) describes the extended family (in contrast to an earliermodel of African-American social structure, “the matriarchal family”) asa flexible, social unit made of “uncles, aunts, big mamas, boyfriends, olderbrothers and sisters, deacons, preachers and others who operate in and outof the black home . . . and the variety of adults and older children whointerchange roles, jobs and family functions” (p. 7).

African-American extended families often include “informal adop-tions” and “fictive kin.” Some social gerontology holds that these extendedfunctional social networks account for greater sharing of the burdensof care and more de-centered decision making. In these ways, it ishypothesized, the extended family can diminish caregiver stress. Lessercaregiver stress among African-Americans in turn could explain lowerrates of formal/professional services utilization, institutionalization andexcess disability. This social unit, part of the cultural representation of“authentic” African-American social life, is often hypothesized to be onefacet of the “unique emotional strength of blacks” which protects themfrom the psychological trauma to which “whites” are apparently so muchmore susceptible.

The families in our caregiver accounts are clearly extended ones.However, these are not the pools of mutual aid and support we wouldexpect to find by reading much of the literature. As Greene, et al. (1994)report, theNational Survey of Black Americans16 points out that familynetworks among African-Americans are not as extensive as once thought.Furthermore, in our interviews, time and again, caregivers speak of howunsupportive their extended families have been. In general, what emergesfrom our data is that extended families let caregivers down or actuallyadded to their daily burdens. Listen to Mr. Jones as he describes his wife’sextended family:

I can’t even explain that really because all her life she has always done for her [six]children. And nobody came before her children. Just like when we first met, that’s the firstthing. We sat down and we were talking and she said “I want you to know that as much as Ilove you, nobody else comes before my children. My children come first.” Which I admiredher for telling me that. Very few women would stand up and tell a man that, and she’d thinkthat a man would get up and walk off or something, you know what I mean?. . . And evento this day, she still has that same feeling about the ones that don’t even come to see her.She loves them just as much as the two that come to see her. . . . She’s got grandchildrenshe don’t even see them. Great-grandchildren she don’t even see. She wouldn’t know themif she saw them in the middle of the street and shook hands with them. And that’s not herfault, that’s their children’s fault. They’ve always got something to do. They don’t havetime for Ma now, they’ve put Ma aside. They don’t need her now. But if they want some


money or they want something else, they’ll come see grandma. When they come, that’swhat they’re coming for, they want something. They don’t come out of love. And I wouldtell them that to their face. I don’t bite my tongue about it.

Many other caregivers told of similar experiences with their extendedfamily. Mr. Williams, who cared for his mother, told us:

The family is not this close knitted thing.. . . But me being like the senior citizen after mymother . . . I usually try to keep everybody informed about what’s going on, how thingsis. . . . They always knew her [mother with Alzheimer’s] to be in charge. And they said theydon’t want to go to see her. . . because seeing her in the condition that she’s in, you know,is kind of devastating.

Finally, Mrs. Taylor, a caregiver for her mother, stated:

I mean as far as the family’s concerned, yes. I mean, that really hurt me most of all. I wasupset at that. They didn’t have the time or take the time to come and assist me, give me,you know, a hand. . . . And I had to do all the time, rush out and rush back, you know, it wasjust terrible. And that’s one thing I was upset about it, my family. That’s what I’m upsetabout.

Thus, our interview data with African-American caregivers resonatemore with early social gerontology studies of white ethnic groups. AsSokolovsky (1990) cites Cohler and Lieberman (1980) who wrote aboutIrish, Polish and Italian families in Chicago: “Although it has beenassumed that social relations are inherently satisfying and reduce theimpact of life stress it appears that, at least in some instances, such socialties may enhance rather than reduce feelings of distress” (p. 207).

Further, in contrast to therapy management groups17 these extendedfamilies don’t do much joint decision making. Over and over again in thesestories, the caregiver reports that he or she is a single decision maker. Thefollowing are examples of caregivers’ responses when asked about whomade the decisions that were made in the family regarding the welfare ofthe demented relative:

Any sort of decision that has to be made, whether it’s financial, care or whatnot, I’m theone that has to make it. (Mr. Franklin, caregiver for his father)

All comes from me. . . . Nothing different than I haven’t been doing all along anyway, youknow. (Mrs. Bates, caregiver for her husband)

All the decisions. . . . There was no one else to make it. . . . I have no help. Imean, she hasgrandchildren, that she was always good to, but they don’t have time. I mean, it’s just me,you know (Mrs. Taylor, caregiver for her mother)

We do not mean to suggest, of course, that extended families are nothelpful, sometimes tremendously so, to Black families. Rather, we high-light the extent to which existing data, largely quantitative, fails to capturethe experiences of so many of the families we interviewed.


Give Me That “Old Time Religion”

In a great deal of the social gerontology literature on African-Americansand their caregivers, religiosity and the church are key topics, second inimportance only to extended families. The conventional wisdom of somesocial gerontology writing and the empirical facts found there is that reli-gion provides a unique and powerful role among elderly black Americans.Black/White comparative analyses consistently demonstrate that elderlyBlacks are more likely and frequent participants in religious activitieslike engaging in regular prayer or reading scripture, attending services,or consuming religious media than elderly whites (Taylor 1993). “Theblack church plays an important role in the material and psychologicalsustenance of black Americans generally, and older blacks in particular”(Taylor and Chatters 1986, p. 637).

This representation, however, contrasts with our interview data. Discus-sion of faith and the role of the church are infrequently mentioned in thissample of African-American caregivers. When people are asked about howthey cope with illness and with the burdens of caregiving, they never spon-taneously mention faith in God or church support. In certain interviews,interviewers asked specifically about the importance of church support.The majority of responses indicated that caregivers did not perceive theChurch to be an important source of support to them in their caregivingrole. For example, Mr. Jones explained “I’m not really what you’d call achurch going person. I’ll go and I know a lot about the church. And I goto her church more than I go to anybody’s.” Mr. Williams, caregiver forhis mother, told us, “The minister was no help. He told me, ‘I wouldn’ttouch that woman with a ten foot pole.’ ” Finally, a woman who caredfor her mother told us, “I never really had too much conversation withanyone at the church about it [mother’s illness]. I never talked to my pastorabout it. I just never did, I don’t know why.” However, two caregivers didemphasize the importance of spirituality and religion to them. For example,Mrs. Bates spoke about his spirituality:

Interviewer: What kinds of inner resources or spiritual resources do you draw on to copeday to day?Mrs. Bates: Well, when I wake up, I have a little book by my bed, “The Living” something.Each day has a little verse on it. I read just one of those little verses and I’ll close it. If I getreally, really angry at him, I’ll come back and say, “Please God, forgive me for being angryat him. I know he doesn’t mean it; doesn’t know what he’s doing. Give me the strengthto go on.” Because I want to punch him.. . . And I have a neighbor. I talk to her. . . I go togroup meeting at [the hospital] once a month.

In another interview, a wife who cared for her husband with Alzheimer’ssaid that she relied on God and prayer in difficult times of care. She


prayed that her husband would “get his mind back.” For her, prayer was animportant source of inner strength: “There’s a freedom in telling the Lord.Something’s uplifted off of you.” This couple rarely participated in reli-gious services. However, deacons from her church visited on occasion. Thecaregiver wife explains that the deacons, unfortunately, were not aroundwhen she “needed them most.” She couldn’t afford to bury her husbandwhen he died. Ultimately, the church where the husband was once an altarboy (not the church of the visiting deacons) paid for the funeral. Thoughthese last two accounts come closest to the prevailing representations ofreligiosity among African-American elders portrayed in much of the liter-ature, our data on African-American caregivers fall short of matching whatis represented as an “essential” African-American coping mechanism.

Regional differences in Church participation may in some ways havea role in explaining these notable exceptions to the rule of what is knownabout African-American elderly participation in Church.18 However, at thevery least, the interview data suggest that intragroup diversity with regardto the meanings of church participation among African-American families(and thus its importance as a cultural moderating factor in family care-giver burden) may be underexplored in some social gerontology writingon “difference.”

Formal/Informal Care Mismatch?

Another cultural explanation for why African-Americans underutilizeformal health and social services is that these services are somehowdissonant with informal caregiving and do not smoothly incorporate the“culturally diverse” informal networks of minority elders. This explana-tion, however, does not resonate with the stories we collected amongAfrican-Americans. For example, Mrs. Taylor, who cares for her motherat home, along with her husband, self-referred to a formal services agency.She explains her “underutilization”:

Well, you know, when you’re trying to get into those places [for daycare], you have to gothrough lots, you know. So I had to go through lots. [She goes on]: You had to go throughMedicaid, you had to go through all this. You’d have to call here. You’d have rules, youknow. You’ve got to keep calling back. There’s just a whole lot of stuff.. . . Before shestarted going to daycare, she was just with me day and night, day and night. And I had norelease from [mother].

Other caregivers report finding their way to formal social support networksonly to be scorned:

Welfare workers are the rudest people in the world. . . . People who work for the State arejust rude. . . . They had me characterized when I went in there. They didn’t know that I wentto try to ask why my mom wasn’t getting benefits. But, they make you feel like you’re


beneath yourself. I had never had to deal with them before. I’ve always worked, I alwaystook care of my kids . . . I would never want to be involved with [welfare department] again.I refuse to go back there for help ever again. (Mrs. Bates, caregiver for his wife)

Though many caregivers in our study managed difficult care for manyyears without formal in-home services, once they obtained these servicesthey report no trouble in making use of them. Home health aides, visitingnurses, and homemakers eventually became important parts of their lives.One caregiver accommodates five different home health aides to help hertake care of two elderly relatives who live in her household. Though thismay represent system fragmentation, not once does a family caregivermention any unease or conflicts between informal and formal caregivingstyles. However, the lack of continuity in the parade of helpers in thesehomes is a recurrent theme. Quite consistently, informal caregivers figuredout complex ways to position themselves within the discontinuities offormal caregiving; they pieced together conditional and bureaucraticallychallenging part-time schedules of politically-sensitive, unstable formalresources to accomplish the tasks of care before them.

One caregiving couple, an African-American janitor and a home healthworker, demonstrate another example of the use of formal services. Thiselderly couple, tragically excluded from formal education beyond primarygrades because of Jim Crow laws and color-coded economic inequal-ities which oppressed them over much of their lifetimes, cares for thehusband’s Alzheimer’s afflicted mother. In an interview, they spoke aboutwhat they learned from psychiatric services (“talk therapy”) provided by aforeign medical graduate at a local medical institution: “My primary doctorreferred me to a psychiatrist because I felt pains; I was physically ill frompain that wasn’t really pain.” The wife joined in: “He wasn’t eating orsmiling. But the doctor asked good questions. He was very prepared. Hehad read my record. And he helped. Now my husband worries less andsmiles more and has a better appetite.” The wife, however, (who had noinsurance coverage) couldn’t get access to therapy: “I began to smoke moreand more and only drank soda. I couldn’t eat but my husband talked to meand helped me just like his therapist did. Then I felt better.” The coupleagreed that gaining access to formal services was key: “Once you get intoformal/professional services” (i.e., past the clinic door and registrationdesk at the doctor’s office) they report: “Cultural and racial differencesdon’t matter.”

On this important point (that discrimination exists only at the levelof access to medical institutions), the caregivers’ beliefs about how theworld works clash with other perspectives about how the social worldworks. A great deal of contemporary health services research suggests


that even when access to medical services is achieved (i.e., when peoplemake it through the clinic door to the doctor), differences in care forBlacks and Whites may be demonstrated (Geiger 1997). In short, racialdifferences appear to matter in terms of quality of care. Interestingly,despite the challenges and burdens of a social structural context riven byexclusion, inequalities and institutional racism, these respondents main-tain a firm belief in the beneficence of their own individual doctor-patientrelationships.

On the Logic of Symptoms

But I knew something was wrong, because he wasn’t saying – I mean we argued aboutcertain things. For example, not finding things. He would accuse me of taking his keysor money. And I’d go around, go back to where he said he left them and, “There it isright where you left it.” He would hide things. He would hide his wallet. And he’d say:“Somebody’s coming in this house and taking my things.” (Mrs. Barnes, caregiver for herhusband)

In almost all of the African-American accounts, in stark contrast to inter-views with the Irish Americans, Mainland Puerto Ricans and ChineseAmericans, key to the story of illness and care was a “trope” of thingshidden, lost, stolen or misplaced – especially money. An elder might haveshown clear and concerning symptoms of memory loss for a long time, butthe caretaker recalls that something really dangerous was wrong when theelder began to hide things and accuse people of stealing money from himor her. The following are but four examples of this prominent theme:

But I know she was really getting sick when she began to misplace things like money andI would have to look for it. And it kept getting worse and worse. I noticed changes in hermemory for months but then her attitude seemed to change. She became possessive andaccusatory. She always thinks someone’s going to take something from her. She’s alwayspeeking to see if they’re bothering her things. She goes and gets her pocketbook. She looksand looks. Then I’ll say mama don’t do it. You always accuse. [She goes on]: The moneyaccusations are abusive. To be called a liar – that hurts. (Mrs. Gordon, caregiver for hermother)

About two years ago, seems like I was always driving over to her house because someonestole her money or she couldn’t find it. It just keeps happening. It just didn’t seem normal.So I became suspicious at this point. (Mrs. Dawson, caregiver for her mother)

We knew something was wrong when mom accused her 13-year-old granddaughter ofstealing her credit card. She almost became violent with this child. We found the card lateron. (Mrs. Banks, caregiver for her mother)

We noticed something was wrong. He would perseverate. Or he’d say, what did we do?It was money. He’d say, “It ain’t mine.” And then he’d take his money and hide it. Andthen he couldn’t find it. There might still be money hidden around here, who knows. (Mrs.Barnes, caregiver for her husband)


Recollections of these accusations were often particularly noteworthy andpainful for the caregivers. These kinds of experiences of pain and loss andwrongful accusation are a feature of their burdens not adequately capturedin much of the literature on burden. They were much more prominent inthese interviews than folk illnesses, such as “worriation,” “thinking toomuch” or “falling out,” or folk remedies and alternative medicines. Wefind little evidence that the distinctive “cultural moderating factors” ofAfrican-Americans are a barrier to earlier diagnosis for these families.Caregivers were often aware of and were concerned about the elders’lapses in memory, lack of analytical judgement, and ability to manage hisor her money and other affairs. These caregiver accounts turn on conflictsover the perception of injustice and wrongful accusation – particularly overlost or stolen money among elders care networks often characterized byfew resources despite lifetimes of work and servitude.

Speaking of Social Structural Contexts: A Reprise

Critical points in the illness course of dementia and of caregiver experi-ences – accusations of “lost” money or thievery in the caregiver accounts –acquire particular meanings within the local contexts of economic inequal-ities and vulnerability. Despite lifetimes of servitude in difficult labor,elder status for these African-American lives ushers in new and humili-ating unmet needs and suffering. As many authors have noted, African-Americans as a group suffer a disproportionate burden of economichardship in the midst of plenty. The wounds of economic inequality andexploitation are especially acute for elderly populations and are unevenlydistributed across different racial and age groups. Between 1985 and 1990,while poverty rates decreased for elderly whites by about 1%, poverty ratesamong blacks increased by about 2%. By 1990, the poverty rate for elderlywhites was 10.1% in 1990 compared to about 34% among elderly Blacks(Jennings 1994).

Many have argued that institutional racism is not the sole oreven primary cause of poverty among minorities. However, cumulativeoutcomes of daily activities – skills and network development and thesharing of information, mentorship and job and business opportunities– within institutions dominated by the interests of the privileged (whoare disproportionately white and male) – do reproduce patterns of racialand gender disparities in the division of labor. In this way, “minorities[become concentrated] . . . in jobs that are part-time, low wage and withoutbenefits of health insurance, pensions or even Social Security” (Jennings1994, p. 97 cites Carballo and Bane 1984). Wallace has shown how urban“planned shrinkage” and “desertification” processes – withdrawal of basic


municipal services – operate in places like those in which most of thesefamilies live (Wallace 1988). Massey and Denton (1993) argue that theforces that create and discipline patterns of residential segregation concen-trate poverty and push African-American communities to the periphery ofthe political and economic system. This marginal position renders themexquisitely sensitive to macrolevel economic declines.

The caregiver accounts bring to light experiences of elevated economicvulnerability of inadequate accumulation or increased decumulation ofwealth – in the context of growing inequality. As many writers pointout, inequalities may show up in patterns in the distribution of illnesses(Farmer 1999). However, inequalities may also register in the very patternsof symptomatology or as part of the meanings of caregiver burden.

Remembering

Listening to caregiver accounts about this class of people for whom life ishard and work is servitude instructs us to “follow the money.” Someone,somewhere must be thriving on the surplus value of the labors of a racial-ized servant class. Indeed, the logic of symptoms may lead observers toask: “Where did the money go? And who took it?” Surely, that money issomewhere around here – stealthily stashed away by some clever trickster,hidden under mattresses, lining somebody else’s pockets, conveniently“misplaced” into somebody else’s portfolio, quietly accruing interest insome Other’s account.

Indeed, how does it make sense that Mrs. James, a deeply religious,frail, demented African-American elder who toiled for a lifetime as aservant in a mansion – feeding, washing and dressing other people’schildren, constantly aware that she had left her own – is forcibly evictedfrom her apartment in her old age and now depends on her caregiverdaughter for survival? How does it make sense that an African-Americanwoman, who fled the racial tenor of the South in the great migration, findsherself grieving for a chronically jobless common-law husband who drankhimself to death, or mourning the loss of a son violently murdered in aBoston ghetto?

Recounting African-American family experiences (in the form of care-giver accounts) within their social structural contexts lays bare how socialforces like racism, the appropriation of surplus value, and economicinequality actually work. These caregiver accounts show how large-scalesocial forces come to be “embodied as individual experience” and get“translated into personal distress and individual symptomatology” (Farmer1995). Why should the symptoms of many of the African American eldersbe constituted overwhelmingly of persecutory content? Though some clin-


ical reviews emphasize the importance of paranoid/persecutory featuresof psychotic delusions common to many Alzheimer’s patients’ courses(Bolger et al. 1994), the prominence of persecutory content in theseAfrican-American caregivers’ accounts (in contrast to its absence fromcaregiver accounts among other racial/ethnic groups in our data set) isparticularly striking in our pilot study. How do we account for these storiesin these families? There may be many different roads to a final commonpathway of paranoid, psychotic delusion among dementia patients. Whatwe are suggesting is that the structural contexts of inequality – past andpresent – may be made to matter in the distribution, content, and logicof symptoms. These structural realities may also register in the course ofdementing illness and the caregivers’ experience of burden.

And so it comes to pass that Mrs. James, who worked for a lifetime asa domestic and cook, was suddenly homeless in her old age. This deeplyreligious woman who “lived and breathed the church” all her life, “gothappy” and spoke in tongues, soon thereafter “lost her bible” and beganto hallucinate – not about angels, the beatitudes, or the face of God – inthe course of her dementing illness. Rather, “she would see things in herfood and she wouldn’t eat. I’d take her to church . . . and she didn’t want togo because there was animals in the pulpit. Someone was always after herwith a knife.” Mrs. James wandered the city at night:

She wandered. . . . She spent one entire night out. That was the worst. That was really theultimate, not knowing where she was for 24 hours, and they to be found somewhere in adifferent city, Cambridge, and not know how she got there, what happened to her duringthe course of the night, with a loaf of bread in her hand.

Mrs. James talked to herself constantly: “She lived in the mirror. And I wastold [by the doctor] to take something and cover the mirror, but I never did.She wasn’t really hurting herself, and if I put something over it, she took itoff, anyway.”

These caregiver accounts speak of deep frustration and trauma. Theyare stories full of burden and loss, emptiness and alienation. These aspectsof African-American caregivers’ experience have not been adequatelycaptured in comparative social gerontology on caregiver burden. Themeanings of illness represented in these caregiver accounts may be a mirrorfor large-scale social forces at work as they construct lives ravaged byracism, economic exploitation, poverty, loss and cultural misrepresenta-tion.


Re-Reading Social Gerontology on Difference

Comparative studies in social gerontology cover a wide range of prob-lems, from the study of health care access and utilization to “genetic”and psychological variables in the aging process. However, much ofsocial gerontology has not adequately distanced itself from the racial andethnic essentialism so pervasive in the wider North American culturalcontext. But essentialist approaches to comparative studies have importantconstraints (Dyson 1993). They may lead to neglect of intraracial andintraethnic diversity. Racial and ethnic essentialism may also divert atten-tion from the critical questions of what interests are served in socialcontexts riven by inequalities. Essentialism may obscure questions abouthow forces like institutional racism, discrimination and class conflict shapehealth and social risks. This essay suggests that a large scale social forcelike institutional racism – and the stereotyping and principles of exclu-sion which undergird it – subtly exerts its effects on the comparativestudy of when, where, how and under what circumstances caregiving for ademented elder happens.

In a context of racial and ethnic stratification and oppression, racially-based comparative studies – even ones that use precise, carefully qualified,sophisticated statistical models sensitive to the problem of stereotyping –may be misappropriated, misinterpreted and misused by policy makers andadministrators, as well as health researchers and care providers in waysthat may reproduce and reify rather than challenge and disrupt prevailingracial stereotypes and skin-color coded social structural hierarchies. Thelimitations of racial stereotypes found widely in the comparative liter-ature are striking when juxtaposed with accounts from extended caregiverinterviews.

A great deal of the corpus of comparative work on caregivers mayrepresent a contemporary mythology – a kind of “depoliticized speechthat empties the object of which it speaks of all history.” Mythologies ofinformal caregiver experience when rendered too narrowly may generate,following Barthes (1972) an “economical message” which:

Abolishes the complexity of human acts, gives them the simplicity of essences . . . doesaway with all dialectics [or] with any going back beyond what is immediately visible. . . organizes a world which is without contradictions because it is without depth, a worldwide open and wallowing in the evident, [thus] establish[ing] a blissful clarity (p. 143).

In some of the Black/White comparative social gerontology literatureon difference and caregiver burden, one may detect the hint of vexedromance with a social science Frankenstein: The image of an essential, allpurpose, authentic, African-American caregiver relatively untraumatizedby a lifetime of discrimination, exclusion, servitude and subordination.


Prevailing representations of “racial differences” in caregiving maybecome a barrier to formal (i.e., paid) care among some African-Americans. The mythic caregiver renders the moral dilemmas of publicdisinvestment from formal care infrastructures cleaner and less compli-cated. Budget-cutting of health and social services for marginalized popu-lations is easier when explanations for underutilization can be confinedto “essential” or “natural” attributes of racial or ethnic identity. In short,economic and political inequalities encoded by race and ethnicity (Appiahand Guttmann 1996; Omi and Winant 1994; Winant 1994) are some-times obscured by traditional and essentialist approaches in a great dealof scholarly writing on “difference” in family/caregiver experience.

The study of burden too narrowly constructed may fail to contain thelives of African-American subject/characters. However, tragedy inevitablydeclares itself. As Nobel-laureate Toni Morrison writes on the makingof other “mythologies” of Blackness in other realms of writing: “Thingsgo awry. As often happens, characters make claims, impose demands ofimaginative accountability over and above the author’s will to containthem” (1992, p. 28).

CONCLUSION

One of Anthropology’s greatest potential contributions to social geron-tology may be to extend the discipline’s imaginative accountability tothe local meanings of chronic illness and to local interpretations of theburdens of human suffering which caregiving for a demented elder mayrepresent. This essay uses an anthropological gaze to interpret a setof caregiver interviews. Interpretations of African-American caregiverexperiences and the logic of caregivers’ experience of elders’ dementiasymptoms, in particular the pervasive trope of lost or stolen money, requireattention to the embodiment of large scale sociopolitical and historicalforces like residential, educational and occupational segregation, racism,and economic exploitation. The essay, based on extended, informal, in-home, open-ended interviews disrupts prevailing representations of “theAfrican-American caregiver” as relatively untaxed, unburdened, untrau-matized, indistressed or impervious to depression. The caregivers in theseaccounts are not protected by any mythic “African-American caregiverideology,” nor any aspect of “ethnic-compensation” with which servitudeis “value congruent.”

A social gerontology that does not bring into clearer light how largescale social forces – like institutional racism – may show up in a rangeof ways in local settings may actually (and tragically) exacerbate cultural


misrepresentations despite good intentions. These misrepresentations maybe critical to both symbolic reproduction of images of “difference”in contexts riven by social inequalities and the experiences of humansuffering within them.

ACKNOWLEDGMENTS

This research was supported by National Institute on Aging grant AG-12057 (S. Levkoff, P.I.). The authors wish to thank Madelyn Hicks andLinda King for assistance in conducting these interviews. The authors alsowish to thank several anonymous reviewers for their comments on thispaper.

NOTES

1. By “race” we refer to a dynamic, socially and historically constructed system ofcategorization used to explain human variation. In North American culture the conceptof race has long been used to buttress ideologies of group inequalities and socialstructures of domination and oppression. We completely reject the notion of race asbiological or scientific in nature but recognize it’s social and cultural significance.Among the many excellent reviews of the history of the concept in the North Americancontext see Appiah and Gutmann (1996), Winant (1994), Omi and Winant (1994),Gaines (1995), and Krieger (1993).

The definitions of ethnicity are widely debated. Here we mean context specificsets of experiences, actions, strategies, sensibilities or inclinations that mark one’sidentification with, belonging within, or assignment to a locally meaningful, internallyheterogenous but recognizable, positioned social group. For more on contemporaryconstructions of ethnicity see Fischer (1987), Gilroy (1987), Glick-Schiller and Fouron(1990), Hall (1995), Harwood (1994), and Tambiah (1988).

2. See Hinton, Fox and Levkoff: “Introduction” in this volume.3. For more on this theoretical approach see Good (1986).4. We do not argue that the meanings of African-American identity can be reduced to

the experiences of or responses to racial oppression. However, in the study of healthand health care in the North American social structural context, the mechanisms bywhich illness and care are produced and distributed across racial and ethnic groupsmust attend closely to modes of domination, oppression and resistance.

5. Kleinman (1992, p. 127) identifies the anthropological gaze as what generates ethno-graphy: “[Writing that] describe[s] a particular social context and interprets within itplaces, people and other meaningful things.”

6. This approach to constructing anthropological questions is inspired by Farmer (1996,1999).

7. “Excess disability” refers to a situation in which functional limitations exceed thosedirectly attributable to the disease process (see Brody 1972; Advisory Panel onAlzheimer’s Disease 1993, 1992).


8. The definitions of “formal” and “informal” care as “paid” vs. “unpaid” labor followthe work of S. Wallace, 1990.

9. Krieger 1993 deftly critiques this use of “race.”10. Pearlin (1994) and Dilworth-Anderson and Anderson (1994) make this same point.11. See Farmer (1996) for a more extended discussion of this general problem in social

science writing. However, these issues are also brought to light in social gerontology:See Holzberg (1982) and Markides (1982). For a specific example of this problem insocial gerontology see Wykle and Segall (1991).

12. A summary of Gaines’ substantial work on race and ethnicity is beyond the scope ofthis paper and can be found elsewhere (e.g. 1995, 1992, 1985).

13. See, for example, Advisory Panel on Alzheimer’s Disease (1992).14. The racial category “White” is frequently used in the social gerontology literature

as if it refers to a distinctive cultural group. This assumption is very problematic for anumber of reasons, including the fact that this racial category indexes enormous ethnicheterogeneity.

15. See Connell and Gibson (1997) who also make this point.16. This study is a nationally representative cross sectional sample of self-identified

African-Americans older than 55 who were interviewed in their homes by otherBlack Americans. The study documents the actual use of informal help in responseto personal problems.

17. For more on therapy management groups see Janzen (1987).18. Taylor and Chatters (1986) show that North Central region residents compared with

Southerners get more help from Church members. However, perhaps some otherregional differences are in play here.

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K. FOX andS. LEVKOFF

Department of Social Medicine,Harvard Medical School,Boston, MA 02115

L. HINTON

Department of Psychiatry,UC Davis Medical Center,Sacramento, CA 95817

take up the caregiver's burden: stories of care for urban african american elders with dementia

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