The role of religion and ethnicity in the help seeking of family caregivers of elders with...

Journal of Cross-Cultural Gerontology14: 335–356, 1999.© 1999Kluwer Academic Publishers. Printed in the Netherlands.

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The role of religion and ethnicity in the help seeking of familycaregivers of elders with Alzheimer’s disease and relateddisorders

SUE LEVKOFF1, BECCA LEVY2 & PATRICIA FLYNN WEITZMAN 1

1Harvard Medical School, USA;2Yale University School of Public Health, USA

Abstract. Stages of help seeking during illness have been identified as follows: disease experi-ence, symptom attribution, decision to seek care, and contact with care providers. These stageshave not been evaluated amongst family caregivers of elders affected with Alzheimer’s diseaseand related disorders (ADRD). Since minority families typically care for ADRD elders athome, it seems important to understand the help seeking of minority family caregivers in par-ticular, and the role of religious/ethnic factors. Thematic analyses were conducted on in-depthinterviews from 10 caregivers from 4 groups (total n = 40): African-American, Chinese-American, Puerto Rican, and Irish-American. Aside from the disease experience stage, wherereligious/ethnic themes were negligible, between-group differences existed in these themesat other stages. For example, themes of extended family support emerged around decisionmaking, with much between-group variation. At the contact with providers stage themesof contacting religious or ethnic service organizations were present, again with between-group variation. Chinese-American and Puerto Rican narratives contained themes of languagebarriers to care, and a lack of culturally-competent services. Both Irish-American and African-American narratives showed themes of alienation from religious groups on the one hand, andusing prayer to cope on the other. Narratives from all groups contained themes of religiousand/or ethnic imperatives for providing care. Overall, findings reveal that religious/ethnicfactors may both aid and impede the help seeking of caregivers.

Keywords: ADRD, Care providers, Dementia, Ethnicity, Religion

Introduction

Much research has focused on the decision process that older individuals gothrough in seeking care for an illness (Blazer & Houpt 1979; Levkoff etal. 1987, 1988). Ethnic minority elders constitute a growing portion of ourelderly population (Baker 1992), yet little is known about how help seekingand decision making during illness are undertaken by ethnic minority elders,particularly amongst those who provide care for a family member sufferingfrom Alzheimer’s. Alzheimer’s disease and related disorders (ADRD) aresome of the most common and debilitating chronic illnesses to affect olderpersons (Roughan 1993). Although ADRD refers to a number of different

336 S. LEVKOFF, B. LEVY & P.F. WEITZMAN

disorders that vary in presumed etiology, all are characterized by cognitivedecline as well as protean changes in personality, affect, and behavior. Asis true for other chronic mental illnesses, ADRD has dramatic effects onthe afflicted person’s family, who often provide care and make decisionson behalf of the elder when he/she can no longer function independently.Ethnic minority families may be more likely than white families to take onthe responsibility of caring for an ADRD family member at home (Barresi1990; Liu, McBride & Coughlin 1994; Vitaliano et al. 1989). Several studieshave shown ethnic minority elders to identify strongly with religion, and touse prayer and other private religious activities for coping with stress (e.g.,Markides 1983; Walls & Zarit 1991). For members of ethnic minority groups,religious identification can be an integral part of ethnic identification (Barresi1990; Vargas 1992). Thus, in examining the help seeking of ethnic minoritycaregivers it seems important not only to identify culturally-derived percep-tions about ADRD and the help seeking process, but to evaluate how religiousperceptions shape thoughts and actions taken as well.

Drawing from the work of Mechanic (1978) on illness behavior, Levkoffet al. (1987, 1988) have proposed a help seeking model to describe the stagesolder individuals go through in seeking care for an illness. We used thismodel as the basis for organizing our analysis of the help seeking of familycaregivers, and of the role that religious and ethnic perceptions play at eachstage of the model. The four stages are: (1) disease and symptom experience,(2) symptom appraisal, (3) decision to seek care, and (4) contact with careproviders. In brief, the disease and symptom experience stage represents theinitial onset of physical symptoms which initiates an illness behavior episode.The symptom appraisal stage is when an individual engages in cognitive andsensory activities to interpret the experience of pain and/or changes in func-tioning. The decision to seek care stage occurs when an individual decideswhether or not to seek care from a provider. Psychosocial factors, such asinput from family members, may play a large role at this stage. The contactwith care providers stage occurs after the decision to obtain outside help.Situational factors, such as accessibility to the care provider, can influencethe nature of the contact, and how helpful it proves to be. The four stagesof this model have been used in theoretical discussions of illness behavior inthe elderly, but have not been used to evaluate the experience of a specificdisease, such as ADRD, and how religious and ethnic factors relate to helpseeking. Since each stage of help seeking represents a potential transitionpoint during which intervention could prove to be beneficial (Levkoff et al.1988), understanding how it is undertaken by family caregivers of ADRDelders seems essential.

RELIGION AND ETHNICITY 337

Religious and ethnic factors have been identified as a part of an indi-vidual’s perception of illness (Picot et al. 1996), and may hold some explana-tory power in the caregiving experiences and decisions of family caregivers.For example, religiosity has been shown to exert significant direct effectson the well-being of individuals undergoing stress (e.g., Krause & Tran1989). Although the precise ways in which religious beliefs and/or affili-ations buffer stress have not been clearly identified, researchers speculate thatbenefits are derived vis a vis its organizational function of providing accessto social support, and the non-organizational ways in which it influencesthoughts and feelings about the self and others. Conversely, a few studieshave emerged which indicate that religiosity does little to alleviate stress (e.g.,Koenig et al. 1993). Variation in the stress-buffering properties of religiositymay have to do with the source of stress, be it physiological resulting, forexample, from chronic pain or psychological resulting, for example, fromthe loss of a loved one. Studies which evaluate religiosity in relation to aparticular stressor seem necessary to better understand its effects on healthand illness behavior. Furthermore, the lack of clear definition around themeaning of religiosity makes its operationalization and quantitative measure-ment challenging. Qualitative research methods are well suited to getting athow meaning is constructed in everyday life, especially when the meaningsand processes under study are not agreed upon (Kvale 1996; Gubrium &Sankar 1994). Thus, it seems important to use qualitative methods whendealing with an elusive construct such as religion.

Ethnicity, in its multiple manifestations, is likely to play an importantpart in caregivers’ perceptions about ADRD (Levkoff et al. 1997). Becauseof the close relationship between religious identification and ethnic identifi-cation, we also evaluated ethnic perceptions in the help seeking of familycaregivers.We viewed ethnicity as a three-component construct as follows:(1) as a set of local cultural resources available for constructing identity anddeveloping behavioral strategies, (2) as a means for negotiating differencesin interpersonal and institutional settings, and (3) as a form of identity. Eval-uating ethnicity in terms of a specific aspect of the caregiving experience,i.e., the stages involved in seeking outside help, rather than more globallymay increase the utility of our research in the development of services forcaregivers from different cultural groups.

Research methods

The data presented here are drawn from our work completed through theNIA-funded Exploratory Center on Culture and Ethnicity located withinHarvard Medical School’s Department of Social Medicine. We conducted a


retrospective qualitative study of 40 family caregivers of elders diagnosedwith ADRD – 10 African-American, 10 Chinese-American, 10 Irish-American and 10 Puerto Rican. African-American, Chinese-American, andPuerto Rican groups were chosen because they are predominant ethnic minor-ities in the Boston area. The Irish-American group was primarily chosen toserve as a white referent group. The high concentration of Irish Americansliving in the Boston area allowed us to convene a relatively homogeneoussample to serve as the referent group. Families were recruited in severalways. Exploratory Center staff provided numerous presentations at localnursing homes, caregiver support groups, adult day health centers, and homehealth care agencies. Staff also talked with private physicians, and requestedthat they refer ADRD patients. Caregivers were either self-referred via ourpresentations, through the social service agencies which hosted our present-ations, or through physicians. To be eligible for the study, the caregiverneeded to meet the following criteria: (1) he/she needed to be an adult familymember who self-identified as providing substantial day-to-day care of anelderly family member (diagnosed with ADRD) within the past year (care-givers of elders placed in nursing homes during the preceding year wereeligible), (2) agency/provider confirmation that the family member was caringfor an ADRD 55 years or older, and (3) self-identify as being African-American (caregivers who identified as black or Negro were also included),Chinese-American, Latino, or Irish-American.

Although our socioeconomic data was somewhat incomplete (because ofthe reluctance of some participants to reveal what they considered to beprivate information), most families were probably low to middle-income,with a mean yearly income of about $23,000. Most of the caregivers (85%)held jobs outside of the home in addition to caregiving. The average age ofcaregivers in our sample was 50 years old. Most caregivers were female(80%). All except one of the Chinese-American caregivers were immig-rant from mainland China, or ethnically-Chinese immigrants from Taiwan,Vietnam or Burma, and had been in the USA for an average of 10 years. (Onewas a first generation Chinese-American.) All of the Puerto Rican caregiverswere born in Puerto Rico, and had been living in the USA an average of 15years. All African-American and Irish-American caregivers were born in theUSA.

Most interviews were conducted by two interviewers, with one takingthe lead and the other making field observations. In all cases, there was alinguistic match between the lead interviewer and the caregiver; however,no systematic effort was made to match interviewers on the basis of ethni-city, race or gender. While in most cases the interviews were conducted withone primary family caregiver, several families preferred to have two or more


people participate in the interview. This was especially true among Chinese-American families. All interviews were conducted in the caregiver’s nativelanguage and the setting of their choice, which was usually the caregiver’shome. The interviews were in-depth and retrospective, with the interviewerusing a guide that outlined domains of interest, including current socialcontext, description of illness onset and course, interpretations of illnessand symptoms, day-to-day caregiving activities, experiences and activitiesassociated with caregiving, patterns of careseeking, and ideals of aging.Interviewers were not given specific questions to ask, and had considerablelatitude to explore other domains that emerged during the interview. Sessionslasted 1 to 9 hours. Interviews were completed in 1 or 2 visits, dependingupon the preference of the caregiver. All were taped, transcribed, and, ifnecessary, translated into English. Detailed field notes for each interviewprovided descriptions of the setting and nonverbal aspects of the interviewprocess.

Data analysis

Our analyses were conducted post-hoc, thus interview questions did notreflect prior assumptions about the roles that religious or ethnic identifica-tions might play in each stage of the help-seeking model. Upon review of thedata, however, it became clear that caregiver narratives contained a significantamount of information relevant to each stage of the model. We adopted athematic analysis approach because it can reveal how cultural beliefs shapehow individuals think about and respond to specific events (Luborksy 1994).We proceeded with data analysis in two phases, the first involving thematicanalyses according to each stage of the model, and the second involvingthematic analyses having to do with the presence of religious and/or ethnicperceptions at each stage. Keep without exception, each narrative containedinformation relevant to each stage. A typical narrative began with the care-giver recalling when he/she began to first notice symptoms in the elder and thenature of the symptoms,e.g., wandering, memory loss, confusion, aggression,etc. All caregivers spontaneously discussed their appraisal of the symptoms,e.g. caused by old age, psychological trauma, environment, ADRD, or someother factor. Decisions about the care of the elder, most particularly aroundwhether or not to admit the elder to a nursing home, and themes relating tocaregivers’ perception about those decisions were noted. Finally, we notedall comments having to do with the nature of the caregivers’ contacts withoutside providers.

The second phase of the data analysis involved evaluating caregivers’discussions of their actions and perceptions at each stage for themes having


to do with religion or ethnicity. We defined religion broadly as either iden-tification with a particular religion, e.g. Roman Catholicism, or membershipin a church community (non-specified). We also noted themes having to dowith prayer or beliefs about a diety. Ethnicity could represent identificationwith a cultural group and its traditions, a place of national origin, a familyidentification, and or identification with a particular geographic region of theUSA, such as the South. We noted themes in which the caregiver explicitlycommented on his/her ethnicity when discussing stages of the model. Forexample, many caregivers spontaneously talked about ethnic identificationwhen reflecting on their decision making about admitting their elder to anursing home. Many caregivers also discussed turning to ethnic or religiousservice organizations during the contact with care providers stage. Finally,in addition to noting ethnic and religious themes relevant to each stage ofthe model, we also noted such themes when they appeared in relation tosome other aspect of caregiving. For example, many caregivers spontaneouslymentioned religious beliefs and the use of prayer in discussing how theyhandled the stress of caregiving. We present our findings according to eachstage of the model, and conclude with a section on religious and ethnic themeswhich arose independent of each stage.

Results

Stage 1: Disease and symptom experience

The dementia symptoms experienced by the elders in this study – memoryloss, wandering, emotional outbursts, confusion, personality change, andoccasional violent episodes – do not appear different from the symp-toms experienced by most European-American elderly persons with ADRD(Advisory Panel on Alzheimer’s Disease 1992). The only exception we foundwas the symptom of preoccupation with financial concerns, such as losingand/or accusing others of stealing money and valuables, appeared morefrequently among the African-American elders with dementia. This uniquefeature of symptomatology might stem from financial struggles earlier inlife commonly experienced by older African-Americans (Fox et al. 1999).Some African-American and Irish-American caregivers cited inappropriatebehavior at church or loss of interest in religious activities as a symptomthat signaled a significant change in the personality or cognition of the elder.Chinese-American caregivers to female elders typically noted changes in theelder’s ability to cook rice. Repeated episodes of burning rice was notedas a symptom. We did not note any symptoms having to do with ethnicrituals or practices in the narratives of Puerto Rican caregivers. Forgetting


the names of family members, however, seemed a salient feature of the initialsymptom experience in Puerto Rican narratives. Since each of the uniquefeatures mentioned above fall into some broader, well-accepted category ofthe ADRD disease experience, e.g. memory loss or personality change, theydid not seem to represent a significant deviation from the typical Alzheimer’sdisease experience.

Stage 2: Explanatory models for symptom appraisal

In the symptom appraisal stage, individuals develop hypotheses about theattribution of symptoms and attempt to interpret them in a cause-effectmanner (Levkoff et al. 1988). ADRD symptoms are particularly subject toincorrect interpretation because they can resemble the symptoms of othercommon diseases of old age, e.g. confusion can result from high blood pres-sure, while aggression/personality change can result from diabetes. Variousmodels of symptom attribution are used in illness. Such models include abiomedical model which is based on mainstream, Western medicine, andemphasizes physiological causes for disease. A folk model attributes symp-toms to non-physiological causes including psychosocial or supernatural onesor to normal aging. A mixed model combines biomedical and folk elements(Levkoff et al. 1997).

Within African-American and Irish-American narratives, themessuggestive of the biomedical model of attribution were most common. Forexample, an Irish-American woman recalled that her mother first beganto experience trouble on the job, which she and her family attributed to‘stress’. Her initial response to this was to turn to her family physician.She reported that the physician did not seem to take her concerns about hermother seriously, and said ‘oh gosh, my father’s like that; they’re all likethat; they all get that way’. Questioning this interpretation of her mother’ssymptoms, she went to a hospital-based memory loss clinic where her motherwas diagnosed with ADRD. Eventually, she placed her mother in a nursinghome. The caregiver made extensive use of the label Alzheimer’s disease,and understood the illness to be a progressive disease of the brain. Similarly,an African-American caregiver described having to repeatedly drive overto her mother’s house because her mother was constantly losing money orother valuables. After several episodes, the caregiver decided ‘it just wasn’tnormal’. She brought her mother to a hospital gerontology clinic for anevaluation because she suspected her symptoms might be due to dementia.The caregiver also commented that she understood that Alzheimer’s couldnot be diagnosed definitively without an autopsy of the brain.

Themes suggestive of folk model symptom attribution were most commonin Chinese-American and Puerto Rican narratives. Dementia symptoms were


typically attributed to normal aging processes in which old people becomelike children. For example, one Chinese-American woman talked about hermother-in-law’s illness by using the metaphor of a second childhood: ‘Whena person gets old, he changes into a baby’. She went on to refer to ADRD as‘old-age illness’ which she perceived to be a normal and inevitable result ofaging. She never used the terms ‘Alzheimer’s’ or ‘dementia’ even though hermother had been diagnosed with ADRD. A Puerto Rican caregiver also spokeof her ADRD mother in childlike terms as her ‘little one’ who had her ‘littleroom’ and wore her ‘little clothes’. In explaining why she did not allow hermother to do household chores, she said ‘it [would be] like ordering a littlegirl around’. However, she also admitted that her mother was not competent tocarry out household tasks. In explaining her wandering, she said her mother‘disappears the way a child disappears’. In explaining her mother’s forget-fulness, she said ‘it is due to her age’. Despite these symptoms and the factthat her mother attended adult day care, when asked by the interviewer ifher mother had Alzheimer’s, the caregiver said her mother ‘has no diseaseor anything else . . . she is the same as always’. Another folk attribution forADRD symptoms seen in Puerto Rican and Chinese-American narratives waspast psychological trauma. Traumatic experiences during China’s CulturalRevolution were present in Chinese-American narratives, while traumaticpast experiences resulting from the loss of loved ones were present in PuertoRican narratives.

Finally, a folk model attribution unique to Chinese-American narratives(often along with those mentioned above) had to do with life in the UnitedStates. One woman commented ‘It was after coming here, did we know thatit’s quite prevalent here . . . in China I never felt that this was prevalent, andI’ve never met any elderly who suffered from this’. Another Chinese woman,who had live in Vietnam for awhile, said she saw this ‘disease of idiocy andretardation’ in Vietnam, ‘but very rarely . . . I feel like the U.S. has a lot’. Shewent on to speculate that the greater prevalence of the disease in the USA wasdue to chemical fertilizers: ‘everything they use fertilizer to boost, like foodand meat . . . like the chicken, how big they are. Each day they lay a few eggs.Where do the eggs come from? [In Vietnam] there aren’t as many eggs’. OneChinese caregiver felt ADRD was caused by the materials used in Americato make cookware.

Among Chinese-American and Puerto-Rican caregivers who used folkmodels, some also incorporated elements of the biomedical model intotheir attributions. For example, one Chinese-American woman described herhusband’s illness biomedically as ‘a disease of the brain that results in himnot being able to remember’ yet she went on to attribute his symptoms alsoto ‘thinking . . . too much about the events of the past [i.e. China’s Cultural


Revolution] . . . until his mind became all bad’. A Puerto Rican womandescribed her mother’s illness biomedically in terms of a chronic, progressivecondition of the brain resulting in memory loss. She also expressed beliefsthat the illness was brought on by poverty, and the death of her son. AnotherPuerto Rican reported taking her father to a doctor from whom he received adementia diagnosis. However, when explaining her father’s memory prob-lems, the caregiver believed they were exacerbated by thoughts about hisdead wife: ‘He keeps saying that his wife died and all that. In addition toeverything, it’s that great loss perhaps’.

As shown by each of these examples, caregiver explanatory models ofdementia may be complex, drawing from folk and medical conceptions ofaging and illness. A biomedical interpretation of symptoms may lead toearlier diagnosis and treatment from mainstream western providers. ‘Normal-izing’ symptoms as a predictable part of aging may require little actionon the part of the caregiver. Help seeking may only occur when impair-ment becomes extremely severe. Attribution to psychological trauma mayalso prompt caregivers and other family members to delay seeking help,possibly because of the perception common among many cultural groupsthat mental illness is shameful (Levkoff et al. 1997) and/or that it is bestdealt with by family members rather than outsiders. A mixed model mayserve the adaptive purpose of providing caregivers and other family membersoptions for deflecting social stigma associated with dementia. The fact thatmany caregivers, such as the Irish-American woman mentioned above, exper-ienced doctors who minimized or normalized ADRD symptoms points to theneed for educating general practice clinicians about the accurate assessment,diagnosis and management of dementia. This educational process should takeinto account the differing cultural backgrounds of both clinicians and patients,and explore explanatory models they both rely on for symptom appraisal. (SeeLevkoff et al. 1997 for further explication of models of disease attributiondrawn from this data set.)

Stage 3: Decision to seek care

Hicks and Lam (1999) suggest that in order to understand the many factorsinvolved in decision making around a chronic illness such a dementia, it isimportant to evaluate the process over the course of the illness, rather thanat a specific decision making moment in time. They argue existing medicaldecision making models focus on a brief decision making moment, whichmay have some predictive value for acute illness, but limited predictive valuefor chronic illness. Because chronic illness is unpredictable with a contextualterrain that undergoes numerous changes, the principles and values whichpatients and their caregivers bring to bear on one decision making moment


may be different from those brought to bear on another. Hicks and Lampoint out that approaches which evaluate decision making processes overlonger time periods can be more sensitive to the varying array of contextualinfluences and the multiple actors who participate in decision making. In thispaper, we brought these two different perspectives on decision making to bearon our evaluation. We evaluated a specific decision making moment, i.e., thetrigger(s) which led the caregiver to decide that outside was needed. We alsoevaluated more generalized perceptions of decision making, i.e. the caregiversperception of the course of decision making on behalf of the elder, and thecaregivers role within that course. We combined the two perspectives because(a) we believe that identifying the antecedents of a specific decision makingmoment, i.e. seeking outside are, may have predictive utility regarding theservice utilization of caregivers, and can serve as a red flag to providersin knowing when a caregiver may be most receptive to intervention, and(b) we believe, like Hicks and Lam, that evaluating the history of caregiverdecision making can help in the theoretical understanding of how the natureof dementia affects decision processes.

With respect to triggers to seeking outside care, a theme common amongAfrican-American caregivers had to do with fears about the physical safetyof their elder. Outside support, particularly day care and long-term care, wassought by some after multiple incidences of physical danger were experi-enced, rather than to gain help in managing dementia symptoms or relievecaregiver burden. One caregiver decided to admit his mother to a nursinghome saying “she lived in [the] projects in Brighton. And at her age, youknow, it wasn’t very safe. The area that she was living in has very heavydrug traffic, a lot of vandalism by youngsters and what have you, a lot ofshootings were [sic] going on out there right under her window”. Severalother African-American caregivers explained that the ADRD symptom ofwandering was especially worrisome to them because of concerns that theirrelative would wander into a violent situation. Whether or not these triggersunique to African-American caregivers are due to actual differences in thecharacteristics of the neighborhoods in which they reside or to differencesin perception is unclear. What is clear from their reports, however, is thathelp in developing strategies to protect against wandering may be an espe-cially important service for caregivers living in high-crime neighborhoods.Among caregivers from the other three ethnic groups, themes around triggersto seeking outside care centered on the need to meet job obligations and/orthe need for some relief from the strain of providing round-the-clock care.These triggers are consistent with those described elsewhere in the literature(e.g., Harel & Dunkle 1995).


When discussing decision making processes, a theme having to do withthe adequacy of family support emerged in African-American narratives.Comments often focused on a perceived lack of support from other familymembers in the decision-making process. One woman stated simply “I makeall the decisions”. An African-American man remarked “Decisions? Allcomes from me”. Another African-American woman said “we’re not a close-knit [sic] family so I had to take over . . . ” Almost all of the African-Americancaregivers complained of feeling isolated in their role as caregiver, whichcontradicts research concluding that African-Americans experience less care-giver burden because of support provided by their tightly-knit extendedfamilies (Wood & Parnham 1990). Few of our African-American participantsseemed to benefit from such family networks (Fox et al. 1999).

A similar theme of lack of family support around decision making andother aspects of caregiving was present in Puerto Rican caregiver narratives.In discussing her decision making, a Puerto Rican woman felt a lack ofsupport from her children and brother, stating: “there are people that arecriticizing me all the time, criticizing but not lending a hand. They do notsay to me ‘I will help you’ but they are willing to make me feel bad. No,my family and my brother demand things of me. [My brother] keeps track ofthings but from very far away . . . I have to beaccountable to him. . . I am likethe saints that die standing up, that is how I have to be, like the saints, dyingon their feet”.

While a few of the Irish-American caregivers reported family conflictswhich arose around caregiving, most either explicitly mentioned sharing theresponsibility of decision making with other family members or used thepronoun “we” when discussing decision making. An Irish-American womancommented on how well her family made decisions together: “I have tocommend ourselves on no resentment. . . it serves no purpose. It only dragsyou down . . . we’ve been lucky”.

Chinese-American narratives contained a theme having to do with tradi-tional Confucian ethical rules which confer decision making authority to aneldest male family member. Determining whether or not these rules shouldbe followed in the new cultural context of America was also a theme presentin several narratives. One caregiver, who was in conflict with her husbandabout decision making on behalf of her mother, stated: “Now [in the USA] Idecide more . . . He says ‘in China, it is mostly man making decision’ ”. Onecaregiver described an intense conflict involving herself, a home health carenurse, and her son. The caregiver had been largely making decisions alone onbehalf of her demented husband. But because of some disagreements betweenthe caregiver and the nurse about those decisions, the nurse sought out thecaregiver’s son and, according to the caregiver said to him: “ ‘you’re a big boy


now . . . don’t let your mother make decisions’ ”. The caregiver responded tothis by warning the son that he also has “two older brothers and a youngerbrother [who did not live in the USA]. If you do some good things, maybeyour brothers will praise you. If you make mistakes, they will blame you.Even if you make the decisions, you still ought to inform me and we can talkabout it”. The caregiver reported that her son agreed, saying to his mother“father is your husband, so you should be the one who makes the decisions”.To which his mother replied: “That’s not so. Now that you’ve grown up,maybe they need to ask you [too] . . . what I mean is that you should also gothrough me”. One Chinese-American woman, who had taken some respon-sibility for decision making about long term care for her mother because herbrothers did not live in the USA, was nonetheless criticized by her brothersbecause they believed it was an inappropriate role for a female. She, in turn,deferred to the judgment of an uncle in the matter because he was the eldestmale family member, which meant that his authority took precedence overher brothers. The uncle supported her role as decision maker, which causedher brothers to reluctantly cease their criticism of her, but not before one ofthem threatened to hire a hit man to kill her if her mother died while in thenursing home. (The caregiver, her uncle, and other family members viewedthe threat as empty.) Chinese-American family conflicts not only highlightthe levels of role that cultural perceptions can play in decision making, butalso how the varying acculturation of the participants in decision making canalso impact process and outcome.

Stage 4: Contact with care providers

When caregivers discussed their contact with care providers, themes ofturning to ethnic or religious service organizations for care were present,to varying degrees, in narratives from each group. For example, all of thePuerto Rican caregivers, to some extent, used services provided by a localLatino organization. Likewise, all of the Chinese caregivers used servicesand/or long term care provided by Chinese-affiliated organizations. While afew African-American caregivers turned to an ethnic organization for refer-rals, most relied on mainstream, non-ethnic organizations for service. Noneof the Irish-American caregivers turned to ethnic service or social organiza-tions for assistance. They used mainstream day care, home health, and otherservices. However, all of those who sought long term care contacted Catholicchurch-affiliated facilities.

Some Chinese-American and Puerto Rican caregivers made initialcontacts for care with non-ethnic, mainstream service organizations, and onlylater learned of ethnic service organizations from which they could accesscare. These narratives contained themes of difficulty accessing appropriate


care from mainstream organizations due to language barriers and lack ofawareness on the part of administrators of cultural preferences. For example,a Chinese-American caregiver complained that when her grandmother wentto an American nursing home:

the food that they were serving was not suitable to her taste. She doesn’tlike Western cuisine; she likes Chinese cuisine. She is not used to eatingcold stuff. Another thing was . . . you know how American people aremore resistant to cold weather, so the amount of clothes given to theelderlies [sic] was not enough for my grandma; so when my sister feltmy grandma’s hands they were cold. She felt cold, but when she told thenurses, they could not understand her. . . because there was a languagebarrier. Most people in the nursing home spoke English. So there weredifferences in food and language.

Prompted by these cultural differences, this caregiver relocated her motherto a nursing home in Boston’s Chinatown, which she believed resulted inimprovements in her grandmother’s mental and physical condition. A PuertoRican caregiver discussed her difficulties pursuing possible abuse of herfather by nursing home staff because of language barriers: “I said ‘I’m goingto try to get him examined in Boston University to determine how he got thosebruises’. . . a lot of help is necessary for all of this work [but] the people there[in the nursing home] don’t speak Spanish. Often they don’t want to give anexplanation”. Another Puerto Rican caregiver complained of a lack of longterm care facilities for Spanish-speaking elders: “There was no one there whospoke Spanish, either. That’s the other thing, there’s no place around herewhere one can take Hispanics, so they can speak their language”. Interest-ingly, while several Puerto Ricans described language barriers encounteredin the USA, there was nonetheless a theme in Puerto Rican narratives havingto do with the superiority of health care in the USA. Some caregivers specific-ally brought their ADRD elder to the USA because they believed they wouldreceive better care here. One Puerto Rican caregiver commented that theLatino agency here “picks her [mother] up at the doorstep and brings herright back here . . . In Puerto Rico she had to walk quite a distance” to get care.Another commented: “In Puerto Rico there aren’t any [health care] benefitsthat there are here. I wouldn’t find such things as a home health aide, havingall the things we get here. Here I just call up the pharmacy and, from there,they send me the things to my house, the diapers, everything. Imagine that. . . If my mother were healthy, I would be there, in Puerto Rico”. Many PuertoRican caregivers described in detail frustrating experiences trying to accesshealth care in Puerto Rico.


In African-American narratives, there were themes having to do with diffi-cult experiences resulting from services which did not understand or considerthe cultural needs of African-American elders. One woman explained thather mother was kicked out of adult day care program because she was justtoo disruptive, just not with the program . . . not able to fall in line and marchto their drum . . . It’s sort of like when your child gets kicked out of day care[for] just not fitting in. My mother is being kicked out her day program. Mydear sweet mother, retired elementary school teacher”. She later explainedthat at the day care program “young people [were] calling her Anna. That’swhat she didn’t like about the [program]. She said “they were just Anna,Anna, Anna”, and I said to them ‘you know, it would be nice if you wouldcall my mother Mrs D’. ‘Oh, we don’t usually do that’. Well, you know,Mother’s a Southerner and she doesn’t appreciate younger people calling herby her first name without having given them permission. [It is] part of herSouthern culture. You don’t generally speak to people by their first name. Imean, you know, family. But even within families. I mean you know for myaunts, everybody was aunt somebody. . . uncle somebody. . . cousin this orthat, so as not to be disrespectful of age. I mean, there’s a real thing aboutrespect.

Another African-American caregiver described how her contact withnursing home care providers was damaged because they did not understand aculturally-based experience of her mother’s. She explained that her motherhad a religious experience at the nursing home, and staff restrained herunnecessarily:

They were singing three or four months ago . . . and my mother got whatthey call happy. They didn’t know what to do with her. She was filledwith the Holy Ghost. She started to cry, jump around, she fainted. Aftershe fainted . . . they didn’t know what to do with her. They didn’t knowwhat was wrong with her. I mean, it’s something that happens in a Blackchurch. I mean, it’s not something that . . . a lot of people know about. Ifyou go to a Catholic church, all they do is sit there. You don’t see anybodyjumping up, and going ‘Ahhh! Ahhh! and then falling out. . . People[came] because they thought she was going to hurt herself. But like Isaid, she fainted and everything. I mean, she just went right out. That’scommon with my mama when she gets happy. She faints.

Caregivers from all four groups, however, also believed that services whichconsidered culture were quite successful. All of the Irish-American caregiverswho placed a ADRD relative in a nursing home, turned to Catholic church-affiliated homes, and expressed appreciation for the support they provided.Also as noted above, the Chinese-American woman who relocated her grand-


mother to a Chinese nursing home was very pleased with the quality of care.An African-American caregiver, who turned to a psychiatrist to help himhandle the stress of caregiving, described how the psychiatrist and he spokeat length about their mutual love of blues music. The caregiver said “in thehour and a half we were there, probably a half hour of it was talking aboutmusic . . . And then, he would finally work my problems in, you know, I couldunderstand where he was coming from. . . ” This caregiver expressed howhelpful therapy was for him. Several Puerto Rican caregivers mentioned howhelpful a local Latino social service agency was in facilitating their access tocare.

Despite spontaneous comments about church affiliations in their narra-tives, none of the Puerto Rican caregivers accessed services through theirchurches or expressed the expectation that church communities shouldprovide assistance. Many African-American caregivers also spontaneouslydiscussed church affiliations. However, a theme of concealing the ADRDelder from church communities was present in African-American narratives,thus precluding access of support from church communities. For example, anAfrican-American woman mentioned that, although she is an active memberof a Baptist church, and church deacons visit her house, she did not revealher husband’s dementia to them. She said she “only tells the good Lord”.Another African-American caregiver who was a regular church-goer alsodid not reveal to her church community that her mother had dementia. Sheexplained “I stopped taking her around a lot of people because people just didnot understand. . . they look at her funny, and Idon’t want anybody lookingat my mom funny”.

Like African-Americans, Irish-Americans often have strong associationswith the church. Yet, themes of disappointment with the support providedby clergy, or with God in general pervaded their narratives. One caregivercommented: “My mother’s priest could’ve been better, could’ve tried harder.After all, she wasn’t only his parishioner, she was his cook, you know. Shesaw to it that he ate right. And boy, did he. He could’ve done better. . . I felthe dropped the ball there”. Another Irish-American caregiver, in discussinghow important the church had been to her ADRD mother, described hercontact with them in this way: “we told [the church] that she couldn’t go outanymore, and they really should have come up and given her [communion]. . . my husband was really upset because he said ‘she always went to thechurch and always was . . . ’ but they’re busy and everything”. In reflectingon the burden of caregiving, an Irish-American woman commented: “I loveto be in church. I love being there. It makes me feel so good. . . It’s justa thrill. And I can still tell you, I kneel there and I say ‘God, you know,you’re a bastard. Here I am, God, you bastard’. God hates me”. Among Irish-


American caregivers a theme of disappointment with God and/or the helpof clergy typically co-occurred with a theme of the helpfulness of churchsupport. Chinese-American narratives did not contain any themes centeringon contact with a religious organization for support.

Other religious and ethnic perceptions

A theme which occurred in narratives from each group was that of anethnically-based sense of obligation to care for their ADRD relative. In manycases across groups, caregivers cited ethnicity as a reason for not admitting arelative to a nursing home. For example, an Irish-American woman perceivedpressure from her Irish-American neighbors not to admit her mother, althoughthe caregiver saw it as a way to get much-needed relief. She, nonetheless,did not admit her mother to a nursing home. Another Irish-American womanexplained one reason for caring for her father at home was because “the Irishlike to deal with the elderly”. Likewise, a Chinese-American woman saidshe decided not to place her mother in a home because the Chinese way oftaking care of elders “is much better then the American way”. An African-American caregiver stated flat out the “black people don’t put their old peoplein homes”. And a Puerto Rican caregiver stated that “the Puerto Rican israised in a family that is always united. Rarely are there those that put [theirelderly] in a nursing home in Puerto Rico, there are not many cases. . . we arelike this. And the children also remain in the home, you see, because this isnot like the American. The American quickly throws the child out so that itleaves and becomes independent. I do not find anything good with this. . . No,us Puerto Ricans want that all the world live together”.

Often the ethic to provide care was also located within the religion of thecaregiver. A Puerto-Rican caregiver said she did not admit her mother to anursing home because it was her duty as a Catholic to care for her: “[I carefor her] from the heart, out of faith, for love, because, well if I love God, thenI have to love my family and my neighbor. . . I go to mass, I listen to the wordof God, I know how I should treat others”. An African-American womanalso articulated religious reasons for caregiving: “the good Lord just put it inyour body somewhere or other, and just gives you strength and knowledge toknow how to [provide care], you just have to do it, there isn’t nobody goingto do it for you”. Irish-American caregivers tended to identify their care ethicas stemming from their Irish heritage, rather than their religion. However,because the link between being Irish and Catholic is so strong, as reflected inthe commonly used ethnic label “Irish Catholic”, the contribution of religionto the care ethic might have been implicit in their assertion of ethnicity’s role.

Among African-American, Puerto-Rican and Irish-American caregiversthere was a theme of using prayer to deal with the burden. None of Chinese-


Americans discussed the use of prayer, beliefs about a deity, or other religiousimagery in relation to each of the stages of help seeking. This is in contrastto research on elders from other Asian subgroups, who may turn to religiouspractices and belief systems for dealing with illness (Pang 1996). However,there was a clear theme in Chinese-American narratives of a moral imperativeto care for the elder, which is rooted in Confucianism (Elliott et al. 1996). AChinese-American described the obligation: “When people get old, we haveto take care of the old people, the parent . . . go to the nursing homeseems likewhy you have so many kids, and then let [the parent] go to the nursing home.We don’t want [that]”.

Meeting the needs of family caregivers

An understanding of the ways in which ethnicity and religion function bothto help and hinder the stages of help-seeking undertaken by caregivers canenhance the quality of care offered to caregiver and their ADRD elder. Lately,policymakers and service providers speak to the need to make services forADRD elders and their families more culturally competent. However, theelders and their families are often not consulted about their preferences(Hanser et al. 1996). Questions need to be posed directly to ethnic minoritycaregivers to determine the most important elements in meeting both their andtheir elders’ needs. Language barriers were discussed by many of the care-givers in our study. Many agencies that serve elders and ADRD persons havetranslated materials providing basic information about ADRD. However,translated materials can be of limited value because of the general natureof the information provided, and low literacy levels of many ethnic minorityconsumers. Agencies need to ensure that there are enough healthcare prac-titioners and social workers who not only speak the languages of ethnicminorities, but also understand their cultural preferences.

The existence of organizations set up to serve specific cultural groups,such as the Latino agency, the African-American agency, the nursinghome for Chinese elders, and Catholic church-affiliated homes mentionedby our participants, all facilitated the contact-with-care providers stage ofhelp seeking for caregivers from those cultural groups. However, ethniccommunity organizations need to continually evaluate whether or not theyare adequately and/or appropriately meeting the needs of their clients. Anethnic minority caregiver may seek out a physician who is from the sameethnic group, yet doing so increases the likelihood that that physician willshare ethnically-based perceptions of illness, aging, and/or care. So, forexample, a Chinese caregiver may seek an ethnically Chinese physician, yetthis physician may normalize memory failure and/or attribute it to environ-mental causes. Another example could be the African-American physician


who may assume that an African-American caregiver’s burden is mediatedby church contacts and, thus, directs attention to medical concerns to theexclusion of psychosocial concerns. Our data indicate that the psychosocialneeds of African-American caregivers may be unmet by church groups and/orextended family.

Often, community-based service providers are unfamiliar with ADRDand its impact on the family (Hanser et al. 1996). Both Irish-American andAfrican-American caregivers expressed various reasons for feeling alienatedfrom church groups as result of their caregiving responsibilities. Church-going caregivers may not only feel alienated socially from other churchmembers, but suffer spiritual crises as well, as reflected in the angrycomments of some Irish-American caregivers about God and/or clergy.Our findings suggest that church-sponsored social and spiritual outreachto caregivers of ADRD elders may need improvement. Local Alzheimer’sorganizations may help guide churches and minority service providers in thedevelopment and improvement of their social services. However, it shouldbe noted that strong religious affiliations within a cultural group do notnecessarily mean that members of that group want to access services throughtheir churches. Many of the Puerto Rican caregivers in our sample discussedreligious affiliations, yet none discussed accessing or wanting to accessservices through their churches. Henderson (1996) indicates that Latino care-givers may prefer caregiving assistance vis a vis Latino social organizations.Thus, outreach in Latino neighborhoods may be best received through non-church affiliated access points. Irish-American participants, on the otherhand, seemed to expect and/or prefer church-affiliated assistance.

Our findings also show that certain cultural preferences, such as formsof social address for African-American elders or deference to the decisionmaking authority of an elder male family member by Chinese caregivers,may have implications for service provision to caregivers from those culturalgroups. Lack of awareness of such preferences on the part of providers maysour a caregiver to the idea of outside help resulting in significant negativeconsequences for the caregiver and his/her ADRD elder. Providers attemptingto assist families with ADRD elders typically encourage sharing the care-giving burden and decision making within the family. Imposing such a patternon a family whose culture supports a different arrangement, such as eldestmale decision making, may create an even greater burden on that family(Elliott et al. 1996). In the case of Chinese families, it may be better to identifythe decision maker, and work with this person in implementing a treatmentplan than to encourage the distribution of decision making responsibilityamongst family members (Elliott et al. 1996).


With regard to decision making during illness, medical anthropologicalmodels emphasize the importance of recognizing the ‘constellation’ ofdecision makers within a given family group, rather than focusing on aprimary decision maker, particularly when evaluating the decision makingof members of ethnic minorities (e.g. Hicks & Lam 1999). Because of this,we were somewhat surprised to find as much variation as we did aroundwhether decision making was carried out individually or as a group amongstthe participants in this study. Within African-American and Puerto-Ricannarratives, themes of resenting the role of primary decision maker andexpecting greater family involvement were present. In contrast, the themeof competition amongst family members over who should make decisions,which was present in Chinese-American narratives, implies that decisionmaking by a primary person was viewed as more desirable than groupdecision making. In some instances, the role was being competed for bya female caregiver, which is inconsistent with traditional Chinese patternsof male authority. The restructuring of family groupings resulting fromimmigration as well as the influence of American keep as is concepts ofgender equality seemed to prompt re-evaluation of family decision-makingprocesses. Being the only group that was neither immigrant nor minority, itmight have been expected that decision making by Irish-Americans wouldfollow mainstream American patterns, i.e. carried out by an individualdecision maker. Yet, Irish-American narratives were the only ones whichcontained a theme of decision making as a group undertaking, and ascausing little family tension. (The fact that family conflicts were describedby Irish-American caregivers around other aspects of caregiving suggeststhat the absence of conflict stories around decision making was probably notdue to social desirability.) These data tell us that individual family migra-tion patterns and other aspects of family history, financial concerns, anddegree of acculturation may have greater explanatory power than ‘culture’alone in understanding decision making for dementia and other chronic ill-nesses.

Amongst members of all of the groups represented in our study, providingcare to an ADRD elder was described as an expression of ethnic identity, anidentity which not only included affiliations with a geographic location butwith religious belief systems and institutions as well. Ethnicity is a constructof great variety, which is constantly evolving. Its mutability could be seen inthe everyday experiences of our participants such that it sometimes helpedand sometimes hindered their attempts to meet the challenge of caregiving.At times ethnic and religious beliefs seem to facilitate caregiving in that theypointed the way to a nursing home or agency with ethnic/religious affiliations,or provided emotional sustenance through prayer or shared decision making


among family members. Conversely, ethnic and religious affiliations alsowere perceived as failing to assist in the help-seeking process, sometimesin obvious ways such as language barriers, or in more subtle ways as in lackof family or church support. If religion offered any stress relief to our parti-cipants, it may have done so more on a cognitive level, through prayer andreflection, rather than on a social level through support provided by religiousaffiliations. None of the Chinese American caregivers discussed religion orusing prayer, although all referred to (although not necessarily abided by)rules for family decision making mandated by Confucianism.

What these data make clear is that blanket assumptions about how decisionmaking and other aspects of caregiving are carried out by caregivers of agiven ethnic group may lead to inappropriate service provision. The mostcommon danger for service providers working with individuals from adifferent cultural background is to misinterpret culture as something immu-table, and then apply it mechanically to all individuals from that background(Elliott et al. 1996). Providers must educate themselves about what is, ingeneral, culturally shared among members of a particular ethnicity. Applyingthe recommendations made here may be of value in working with caregiversfrom each group. However, it is important to recognize the heterogeneity thatexists within every ethnic group, and that applying research recommendationsare not the ultimate means to creating culturally-competent sensitive services.Rather, they are the means to discovering what is and what is not true in aparticular case.

Conclusion

While our data reveal how perceptions and attitudes stemming from religiousor ethnic affiliations may shape the help seeking process for family care-givers, they are subject to the usual limitations of qualitative studies based onsmall numbers. We do not consider the ethnic differences we found here to berepresentative. They point to avenues for future cross-cultural research withlarger, more representative samples. Continued research will also help buildour theoretical understanding of the conjoint phenomena of religion, ethni-city, and help seeking for ADRD elders by their caregivers. The usefulness ofthese data, we believe, stem from what they reveal about contextual variablesthat can shape help seeking. Variables having to do with cultural models ofillness, ethnically-based norms for social interaction, decision making, andcare provision, as well as religious affiliations and beliefs appear important.We believe that the extent to which services for minority caregivers considerthese variables will, in part, determine the effectiveness of those services.


Acknowledgement

Support for this research was provided by the National Institute on Agingand Office of Minority Health of the National Institutes of Health, GrantNo. AG 12057. The authors wish to thank the caregivers interviewed whogave so generously of their time for these interviews. Also the authors wishto acknowledge Larson W. Hinton, Mabel Lam, Mappel N. Hicks, JanieSimmons, Ann Linda King who interviewed the caregivers.

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