Constructing Alzheimer's: Narratives of Lost Identities, Confusion and Loneliness in Old Age

W. LADSON HINTON and SUE LEVKOFF

CONSTRUCTING ALZHEIMER’S: NARRATIVES OF LOSTIDENTITIES, CONFUSION AND LONELINESS IN OLD AGE

ABSTRACT. This paper is a qualitative study based on retrospective, unstructured,qualitative interviews with Mrs. Jones and other African-American, Chinese-American,Irish-American and Latino family caregivers in the Boston area. A narrative approach isused to show how family caregivers draw on their cultural and personal resources to createstories about the nature and meaning of illness and to ask how ethnic identity may influ-ence the kinds of stories family caregivers tell. Three different story types are identifiedand described, each with a distinctive configuration of illness meanings and overarchingtheme, or storyline: a subset of African-American, Irish-American, and Chinese-Americancaregivers told us stories about Alzheimer’s as a disease that erodes the core identity ofa loved one and deteriorates their minds; a subset of Chinese caregivers narrated storiesthat emphasized how families managed confusion and disabilities, changes ultimately con-strued as an expected part of growing old; a subset of Puerto Rican and Dominican families,while using the biomedical label of Alzheimer’s disease or dementia, placed the elder’sillness in stories about tragic losses, loneliness, and family responsibility. To construct theirstories, caregivers drew upon both biomedical explanations and other cultural meanings ofbehavioral and cognitive changes in old age. Their stories challenge us to move beyond thesharp contrast between ethnic minority and non-ethnic minority views of dementia-relatedchanges, to local clinics and hospitals as sites where biomedical knowledge is interpreted,communicated, discussed, and adapted to the perspectives and lived realities of families.

KEY WORDS: Alzheimer’s disease, dementia, family caregiving, ethnicity, narrative

INTRODUCTION

I’ve learned that with my mom’s disease you’re not yourself. Who are you? And it’s justlike at that program [Alzheimer’s disease support group], this lady, she absolutely deniesthat her mother’s alive. “She’s not my mother. She’s not who I know her to be. She doesn’tknow who she is.” I wonder if she does. I have a feeling that she doesn’t. Most of the time,she doesn’t know who she is. If you have your right mind and you’re missing your legs,you can still read, you can still write, you can still watch TV and know what’s going on,know when to laugh, when to cry. My mom gets confused, you know, [about] when tolaugh, when to cry. Because I could say, something really bad, [and] she’ll look at me andlaugh. Okay? Having your own mind is your identity. That’s your identity. That’s what youare. . . . It [Alzheimer’s disease] robsyou, you know. But if you just have a heart attack, andstill get along, you just have to walk a little slower, or maybe do a little more walking, orwhatever, you know, exercise to get yourself back in shape. If you have a stroke and get

Culture, Medicine and Psychiatry23: 453–475, 1999.© 1999Kluwer Academic Publishers. Printed in the Netherlands.

454 W. LADSON HINTON AND SUE LEVKOFF

paralyzed on one side of your body, maybe with the therapy they have, you might regainthat use. But you cannot get those brain cells back. Once those tissues start to deteriorate,you can’t get them back. (Mrs. Jones, caregiver for her mother1)

In this epigraph, Mrs. Jones, a 45-year-old African-American woman,describes how Alzheimer’s, a disease that causes brain tissues to “deteri-orate,” has robbed her mother of her “right mind.” According to her logic,when a person loses their “right mind,” they lose their identity. Mrs. Joneshas “learned” about her mother’s illness and how it affects a person’s mindthrough participation in an Alzheimer’s disease support group. Reflectingon the words of another group member, she wonders if her own motheris still there, still alive. Who has she become? As she describes howthe illness has changed her relationship with her mother, she expressessadness, anger, and, in other parts of the interview, fear. The theme of lostidentity runs throughout Mrs. Jones’ interview as she describes the onsetof her mother’s illness, the family’s search for a diagnosis, and the day-to-day experiences of caregiving as her mother became progressively moredependent and disabled.

In their review of illness representations in medical anthropology, Goodand Farmer assert that ideas about the nature and cause of illness oftenoccur in the form of stories “situated” in a particular sociocultural context(Farmer and Good 1991). This paper builds on the work of Byron Good,Paul Farmer, and others who have drawn attention to the narrative structureof illness accounts (Garro 1992; Good 1993; Kleinman 1988) and of clin-ical interactions (Good et al. 1994; Mattingly 1994). Our analysis is basedon retrospective, unstructured, qualitative interviews with Mrs. Jones andother African-American, Chinese-American, Irish-American and Latinofamily caregivers in the Boston area.2 We analyze how these family care-givers weave together meanings of Alzheimer’s disease3 with key lifeevents, affective dimensions of experience, and personal history in theiraccounts of illness. We use a narrative approach both to show how familycaregivers draw on these cultural and personal resources to create storiesabout the nature and meaning of illness and to ask how ethnic identity mayinfluence the kinds of stories family caregivers tell.

Three different story types are identified and described, each witha distinctive configuration of illness meanings and overarching theme,or storyline. Storylines differed across and within the four ethnicgroups. First, a subset of African-American, Irish-American, and Chinese-American caregivers told us stories similar to that of Mrs. Jones – narra-tives of Alzheimer’s as a disease that erodes the core identity of a loved oneand deteriorates their minds. The two remaining types of stories constructthe illness in other ways. A subset of Chinese caregivers narrated stories

CONSTRUCTING ALZHEIMER’S 455

that emphasized how families managed confusion and disabilities, changesultimately construed as an expected part of growing old. Finally, a subsetof Puerto Rican and Dominican families, while using the biomedical labelof Alzheimer’s disease or dementia, placed the elder’s illness in storiesabout tragic losses, loneliness, and family responsibility. To constructtheir stories, caregivers drew upon both biomedical explanations and othercultural meanings of behavioral and cognitive changes in old age. Theirstories challenge us to move beyond the sharp contrast between ethnicminority and non-ethnic minority views of dementia-related changes, tolocal clinics and hospitals as sites where biomedical knowledge is inter-preted, communicated, discussed, and adapted to the perspectives and livedrealities of families.

BACKGROUND

In both low and high-income countries, families – and women in partic-ular – provide the bulk of care for older people suffering from dementia(Levkoff et al. 1995). Whether dementia-related symptoms and disabilitiesare viewed as part of normal aging or as part of a disease process, theyevoke behavioral and meaning making responses from those in the afflictedperson’s social network. Particularly in large, multiethnic societies, thesesocial responses to disabled elders are informed by a variety of culturalmodels. Yet for any given individual or family within such societies,behavioral and interpretive options are constrained by social positioningbased on such characteristics as ethnicity, race, class, gender, religionand culture (Hinton et al. 1997; Kleinman 1988).4 From this perspective,family responses to dementia-related symptoms and disabilities are cultur-ally and socially patterned.

Qualitative and ethnographic studies illustrate how culture, ethnicity,and socioeconomic status influence familial responses to cognitive andbehavioral changes in old age (Henderson 1990; Pollitt 1996; Smith 1996).Cross-cultural research, conducted largely by anthropologists, highlightscultural constructions of memory loss, behavioral changes, and disabil-ities in old age that differ from the biomedical model of disease (Barker1997; Cohen 1998; Ikels 1997; Pollitt 1997). Cohen’s work in India, forexample, shows that angry outbursts rather than memory loss are mostsalient for some families living with an elder manifesting what wouldlikely be biomedically labeled as Alzheimer’s disease (1995). He identi-fies popular idioms whose descriptive characteristics map imperfectly ontothose of professional disease categories. Based on fieldwork in Polynesia,Barker has found that older adults with dementia symptoms are often


assumed to be entering a normative, liminal state between life and death(1997). Ikels reveals how a number of factors, including low expectationsof elders with little formal education, cultural stereotypes of the elderly,and multiple co-existing medical problems, lead to little concern and fearabout memory loss among elders in rural China (1989, 1997). Studiesof ethnic minority groups in the US describe views of dementia-relatedchanges as a normal result of the aging process (Braun et al. 1995; Elliottet al. 1996; Valle 1989), as stigmatized mental illness (Henderson 1996),or as manifestations of folk illnesses (Gaines 1988).

Yet another approach turns a critical eye toward biomedicine to revealthe cultural, historical, and political dimensions of the Alzheimer’s diseaseconstruct (Cohen 1998; Estes and Binney 1991; Herskovits 1995; Lyman1989; Gubrium 1986). Historical studies show that economic and socialforces as well as scientific discoveries have led to the social construc-tion of Alzheimer’s as a disease category (Estes and Binney 1991; Fox1989; Gubrium 1986). Widespread public acceptance of the Alzheimer’sdisease construct has led to what some describe as the “biomedicaliza-tion of aging,” a process through which the troubles of older adults areredefined as medical problems, leading to increasing medical influenceover the lives of older people (Estes and Binney 1991; Lyman 1989).5

In American society, the disease carries a stigma because the symptomsand disabilities “transgress core cultural values,” such as autonomy andproductivity (Herskovits and Mitteness 1994). As a result, the person withAlzheimer’s disease is viewed as less than fully human, as having lost hiscore self or personhood (Herskovits 1995).

Policy makers and health care providers in the United States continueto be concerned that knowledge about Alzheimer’s disease (AD) isnot reaching certain segments of American society, particularly ethnicminority groups. For example, a report by the Advisory Panel onAlzheimer’s Disease concludes that some members of ethnic minoritygroups may “share concepts and attitudes about AD held by the largersociety” while other members may rely on “culture-specific constructs”(1992, p. 36). Studies of ethnic minority groups in the United States oftenfocus on their “culture-specific” views of cognitive and behavioral changesin old age, reinforcing a dichotomy between biomedical and “minority”views of dementia-related changes (e.g., Elliott et al. 1996; Braun etal. 1995). When the sources and implications of intraethnic diversity golargely unexamined, ethnic minority groups are treated as mini-cultureswithin the larger society. Furthermore, this approach assumes an anachron-istic view of culture as a top-down, hegemonic patterning of health-relatedbeliefs, attitudes, and practices (Hinton and Kleinman 1993). In the multi-


cultural context of urban America, some families may draw on biomedi-cine to understand dementia-related symptoms, while other families maydraw on models of health and aging from other medical traditions (e.g.traditional Chinese medicine or Ayurvedic medicine) or nonprofessionalfolk theories, alone or in combination with biomedical knowledge.

A NARRATIVE APPROACH TO CAREGIVER EXPERIENCE

There is a large and growing body of research in medical anthropologythat draws on narrative theory. This section reviews this literature andthen describes our approach to analysis of these caregiver narratives. Thefollowing review is not meant to be exhaustive, but rather highlightsresearch and theory that informs our narrative approach.

Following Bruner, a narrative or story is “a unique sequence of events,mental states, happenings” (1990, p. 43). Bruner goes on to say thateveryday knowledge about the social world is often organized cogni-tively in the form of stories. This is particularly true when situationsdeviate from what is expected or normal. Many such situations occurduring the onset and unfolding of chronic illnesses such as dementia. Forexample, dementia-related changes in behavior, cognition, and self-caremay threaten to cross the line separating the normal from the abnormal.In addition, the social responses of family, neighbors, and health careproviders may deviate from expected roles and obligations in relationshipto the person who is ill.

Illness stories often contain representations woven into a tale aboutspecific people, places and events. They reconstruct past events and exper-iences from the standpoint of the present and may be well rehearsedor attempts at making meaning “on-the-fly” (Garro 1992; Hyden 1997).Stories may serve a meaning-making function by providing an opportunityto adapt cultural models of health and illness to personal circumstancesand biography (Early 1982). Seemingly contradictory cultural models orexplanations may be combined in ways that would be difficult to capturewith more structured approaches to information gathering, such as close-ended questions (Mattingly and Garro 1994). A good illustration of thisis the work by Mathews and her colleagues illustrating how poor African-American women combine folk and biomedical models to “come to terms”with breast cancer (1994). This “mosaic-like” structure of illness represen-tations would be very difficult to capture when respondents are forced tochoose from a pre-determined list.

The illness story’s “overall configuration” may point to larger themesor storylines that reveal important moral and ethical dimensions of human


experience (Bruner 1990). Frank (1995), for example, has analyzed literaryaccounts of chronic illness and identified three story types based on over-arching themes of restitution, chaos, and quest. In his view, stories aremore than individualistic attempts at meaning making; they are forms ofpublic testimony. As such, stories can be regarded as “speech acts” inparticular contexts serving strategic purposes (Farmer and Good 1991).Price’s (1987) work in Ecuador, for example, suggests that narratives ofillness may be viewed as attempts to represent one’s actions as justified andmoral, or to bring attention to how another’s behavior deviates from cultur-ally prescribed caregiving roles. Narratives may also be future-oriented. Intheir work with people who had suffered from seizures and their familiesin Turkey, Good and Good (1994) illustrate that family stories had a“subjunctive” quality that served to keep open multiple possibilities forfuture outcomes.

In this paper, we used a narrative approach to analyze unstructuredinterviews with family caregivers of elderly who had been diagnosedwith Alzheimer’s disease or a related dementia. The introduction to thisvolume contains a description of our method of selecting the sampleand conducting the interviews. In brief, in-home, open-ended interviewslasting two to four hours were conducted in the family caregiver’s preferredlanguage (i.e., English, Spanish, Mandarin or Cantonese) Interviews werestructured only by the use of an interview guide which outlined domainsof interest – current social context, description of illness onset and 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 weregiven considerable latitude to explore these domains and to develop themesthat emerged during the course of the interview. Interviews were tape-recorded and then later transcribed. For this analysis, English-languagetranscripts of all interviews were used. All of the interviews were first readfor thematic content and then coded for ideas about the nature and causeof illness and patterns of care-seeking. A review of this material on a case-by-case basis then lead to the identification of several different types ofoverarching themes, or storylines related to the meaning of illness. Wenow turn to our analysis of caregiver narratives.

NARRATIVES OF LOST IDENTITIES AND DETERIORATINGBRAINS

It has been almost three years since Mr. Reagan disclosed that he had the memory-destroying neurological illness known as Alzheimer’s disease. And if, at the age of 86,


the old movie actor still looks the image of vigorous good health, the truth is that the manbehind the firm handshake and barely gray hair is steadily, surely ebbing away. (Altman1997, p. 1)

Entitled A President Fades into a World Apart, this New York Timesarticle describes the impact of Alzheimer’s disease on former PresidentReagan and his family and friends. Toward the end, the author observes:“Many longtime friends and aides say they find it too painful to comparethe Ronald Reagan afflicted with Alzheimer’s with his former self. Manyvisit only rarely; many no longer see him at all.” This article showshow Alzheimer’s disease is linked to memory loss, brain pathology, andloss of self, creating a set of linked symbolic meanings that Good hasreferred to as a “semantic network” (Good 1977). The cognitive declineand progressive disabilities are viewed as outward signs of an insidiousinner process – the deterioration of the brain and the erosion of a person’score personality and selfhood – about which the afflicted person has littleawareness.6

This set of meanings organizes the stories told to us by a subsetof the African-American, Irish-American, and Chinese caregivers. Theydescribed the gradual onset of changes that were often “mistaken” fordepression, stress, or just old age. Eventually, however, a spouse oradult child became concerned enough to seek assessment and diagnosiswithin the formal health care system. Their pathways to diagnosissometimes began in primary care settings but always led to memoryloss clinics, where a diagnosis was made by an interdisciplinary team,including physician specialists (e.g., neurologists, psychiatrists, and geri-atricians), social workers, and nurses.7 The philosophy of these clinics isto comprehensively evaluate dementia through physical exams, laboratorytests, cognitive assessments, and brain scans in order to rule out rare, buttreatable causes of dementing illness. They also link caregivers with avail-able community resources and services, such as the Alzheimer’s Asso-ciation and local support groups. Following diagnosis, many caregiversparticipated in Alzheimer’s support groups sponsored by the Alzheimer’sAssociation.

Mrs. Williams’ interview illustrates this story type. She is a 63-year-oldAfrican-American woman with one year of college education who workedas a customer service representative at a local hospital and cared for her65-year-old husband in their home. She describes how she first recognizedand then sought help for her husband’s memory loss:

I can say that it started, possibly, before he retired. Which was . . . in January of1990.Before that he used to forget things. He was never good with memory anyway. But thistime, I mean, gradually he got so that we were arguing. I would tell him, “We’re going to


such a place, or someone’s coming here, or we have to do such-and-such, so-and-so.” AndI would tell him, like, today. The thing would come up and he’d tell me, “Well, why didn’tyou tell me?” I said, “I did tell you.” And we would argue about this. So, it got worse andworse and worse. And then I was working too. And I asked someone at the hospital, I said,“Where can I go to get my husband’s memory tested or just to see what’s going on; becauseI think he’s, he’s forgetting too much.” And so they told me. And I said, “Okay, I’m goingto make an appointment.”

After consulting with co-workers, Mrs. Williams took her husband to amemory loss clinic. There, her husband was diagnosed with Alzheimer’sdisease, confirming her suspicions. She was referred to a number ofsupportive services, including an Alzheimer’s support group she laterattended regularly. As her husband’s illness progressed, the support grouphelped her learn how to manage difficult behaviors and cope with difficultemotions.

Eventually, Mr. Williams depended on his wife for nearly everything, acomplete reversal of the situation before the illness. As Mrs. Williams putit, “before he was the person I could lean on no matter how bad things got. . . But now, he depends on me.” He had become “almost like a two-yearold,” a completely different person. Mrs. Williams sums up the meaning ofhis illness and expresses her sense of grief and loss:

It’s such a devastating disease and it takes away from the person. . . . It’s two people. Theperson that you met before, you married before, to someone who’s entirely different. Andit’s just, I know who he is. I know that he’s my husband. But he’s somebody different now.And that’s the sad part. It’s very, very sad. It’s a big loss. It is, it is, it is.

While Mrs. Williams views her husband as completely changed by thedisease, other caregivers struggled to come to terms with this issue. MissChow, a 29-year-old Chinese-American college-educated woman who wascaring for her parents in Boston’s Chinatown, described how she initiallyattributed her mother’s confusion to poor vision. She was shocked whenan ophthalmologist said her mother had Alzheimer’s disease. She tookher mother for a diagnostic work-up at a memory loss clinic where thediagnosis was confirmed. Miss Chow uses a wide array of formal servicesto help care for her mother, including a caregiver support group.

Throughout her interview, she described AD as a “progressive,”“terminal” disease which causes the deterioration of multiple physiologicaland neurological changes. She stressed that it’s “not just memory loss.” Shestruggled to come to terms with the disease’s effect on her mother’s corepersonality, or self:

People say, “Oh, you know, you have to treat her like, you know, she has a disease. She’snot your mother anymore,” they’ll say to me. No, what do you mean she’s not my mother?She’s still my mother. I can’t detach myself from her like that. And it’s impossible, and I


don’t want to. Maybe at some other point, I may, but I can’t let go yet. So, you know, I stilltreat her as if she were – a piece of her was my mother.

Treating difficult behaviors as a consequence of the disease processand out of the person’s conscious control is encouraged in caregiversupport groups and self-help guides to caregiving, such as the 36-HourDay (Mace and Rabins 1981). The person with AD is not responsible forhis actions because the disease has control. This view is clearly articulatedin this piece of narrative from the interview with Mrs. O’Leary, a 45-year-old Irish-American woman with a college degree who also participatedactively in an Alzheimer’s support group. She describes the struggle shewent through in accepting that the behaviors she was dealing with were“not part” of her mother:

Well, as I said, for some reason it was hardest for me, and John would often say to me,“You have to understand that’s the disease; it’s not your mother arguing with you.” And asmuch as that, that seemed reasonable when she wasn’t there, I felt that there were oftentimes that my mother was being obstinate just to be obstinate. . . . But it was a lot easier formy sister to say, that’s not my mother; this is the disease; and let it roll off her back. It washard for me to let go in two ways. One, to say that’s the disease, not my mother, and letgo in terms of the fact I don’t have to fight with this person because this person isn’t there.And I won’t let this get to me. I found that hard to do. And the other thing was to let goof how my mother should be. The business about – I told you about the layers of clothing.The business about, no, you really haven’t washed your face – let’s go to battle over this.To really believe that my mother wasn’t there anymore.

For Mrs. O’Leary, to “let go” is to come to terms with the disease and giveup hope that her mother is still there. It allows her to grieve the loss of hermother and to manage the painful emotions evoked as one witnesses thedecline of a loved one.

These narratives construct dementia-related changes as signs of deteri-orating brains and of diminished selves. Specialists in memory loss clinicsand support groups play important roles in shaping this view of the illness.While “loss of identity” or “loss of self” is not part of the DSM-IV orany other clinical criteria for Alzheimer’s disease, within these narra-tives this popular cultural idiom is seamlessly combined with biomedicalunderstandings. It has become part of a popular discourse of Alzheimer’swidely disseminated through the public media, one that imposes a kindof “social death” on the afflicted person (Sweeting and Gilhooly 1997;Herskovits 1995). Though the person is there physically, a discontinuityexists between his identity before and after the onset of the illness. Theidiom of “loss of self” simultaneously expresses and constructs feelings ofgrief and sadness on the part of the family; it represents a powerful cultur-ally shaped meaning of Alzheimer’s in contemporary American societythat crosses ethnic boundaries.


NARRATIVES OF CONFUSION AND DEPENDENCY IN OLDAGE

In contrast to the previous set of interviews, a subset of Chinese caregiversrelated the elder’s illness to traditional Chinese notions of aging and healththat led to a different storyline. One of our informants was Mrs. Lee, a 45-year-old woman who works as a custodian in a large hospital in Boston’sChinatown near the senior housing complex where her mother lives. Shedescribed a series of events that made it clear to her that her mother couldno longer care for herself. For example, on one occasion her mother wasobserved standing outside in the rain beside the street. When her house-keeper asked her what she was doing, she replied “It is raining and thereis a war.” She wanted to go the bank and withdraw all her money. Hermind, it seemed, had drifted back to a time when people believed a heavyrain indicated a coming war. Another time, she tried to fill her prescrip-tion at a local bank. When her mother started forgetting to eat, Mrs. Leedecided that something had to be done. A convenient solution was for hermother to attend a nearby adult day health program that served daily mealsand catered to Chinese elders. To qualify for these services, however, hermother needed to have a physician examine her and approve the services.This is how her mother came to be diagnosed with dementia.

As she described her interactions with health care providers around thetime her mother was diagnosed, Mrs. Lee referred to her mother’s condi-tion as an “illness,” as “abnormal.” However, she returned again and againto a description of her mother’s condition as an expected part of the agingprocess. To explain what happens to the aging body and mind, she usedthe metaphor of a machine that breaks down over time:

Mrs. Lee: . . . She is like the very old. It is not like she is in herhundreds. But she doesn’tremember things. But when I see these crazy people, they are about in their sixties. Thereis a kid too, about teen-age.Interviewer: You think your mother is not like them?Mrs. Lee: No. She is like a machine, there is a missing part. It is not a crazy machine . . .Interviewer: So you think that –Mrs. Lee: It is old age. These are changes for old people.

Understanding the aging body/mind as a machine is a culturally shapedmetaphor that expresses a holistic notion of health and aging.8 It deflectsthe stigma of mental illness, a concern given her mother’s behavior, andremoves responsibility from the elder and his or her family by normalizingconfusion, memory loss and disability in old age. Mrs. Lee later revealedthat a nurse who works with her mother’s primary care doctor had usedthis metaphor to explain the nature of her mother’s memory and behaviorproblems.


Like Mrs. Lee, other Chinese families in this subset of interviewsdo not regard “early” or “mild” symptoms of dementia as particularlyominous or noteworthy. This may be due in part to traditional Chineseviews of old age as a time when some people may become more confusedand childlike (Ikels 1989). Experiences in the local culture of healthcarein Boston’s Chinatown also play a role. Health care providers, many ofthem ethnic Chinese, emerge in a number of these stories as advocatesof traditional Chinese views of old age that normalize old age confusionand dependency. In other stories, health care practitioners seem to drawon both biomedical and traditional Chinese models in their discussionswith families about the nature and cause of dementia.9 Ethnographic datagathered in this study based on interviews with a number of these providerssuggest that, while aware that their patients have Alzheimer’s disease oranother type of dementia, they see little benefit in “burdening” elders andtheir families with a potentially stigmatizing diagnostic label that carrieswith it little hope of cure.10 Instead, they use explanations they view asmore culturally accepted and reassuring. Chinese families’ recollections ofencounters with their health care providers help to explain why traditionalChinese views of old age are not supplanted by biomedical views, evenafter formal diagnosis of Alzheimer’s disease or dementia.

Stories about the family doctor also help to explain why formaldiagnosis, at least as told from the family’s perspective, occurs later inthe course of the disease. Troubles begin when older people experienceconsiderable disability that is typical of more advanced dementia, such asdifficulty with dressing, bathing, and eating. The search for diagnosis istriggered by practical needs, such as qualifying for entitlements that allowthe elder to receive services, rather than worry about failing memory orother cognitive impairments. As these more serious disabilities emergeand the family seeks care for them in social service agencies and healthcare clinics, families learn that the elder’s behaviors and disabilities arethe result of a “disease.” Yet alternative, nonmedicalized views of old agetroubles remain a prominent part of the family’s illness story. As a result,the Chinese families we interviewed tended to regard the elder’s condi-tion with less trepidation compared with many of their Irish-Americanand African-American counterparts. It was not so much the disease, butrather the disabilities that flow from it that most concerned families. Thesedisabilities, often described in quite a detailed fashion, place demandsupon the family, especially when they interfere with a person’s abilityto live independently. The focus of their stories was on how familymembers had, or in some cases had not, lived up to their filial duties.They stressed endurance and perseverance in the face of these difficulties.


Their stories are often constructed to reveal the moral fiber of familymembers.

Typical of this subset of Chinese families was the narrative of a 52-year-old husband who placed his mother in a nursing home. When thefamily migrated to the United States from Burma, Mr. Wong had hopes ofgetting a college degree. However, economic hardship and a strong senseof duty and obligation to the family dictated that he forgo college andtake a job as a cook in a Chinese restaurant in order to sponsor brothersand sisters who remained in Burma. Mr. Wong and his wife first becameconcerned about his mother when they noticed that at times she would “talknonsense” and get lost in the neighborhood. Over time, her symptoms anddisabilities got progressively worse. They described how she defecated onthe floor, kept everyone up at night by constantly pacing, wandered, cursedat others, and hallucinated: “When she hallucinated, she jumped from spotto spot, saying that there were puddles of water or snakes, and she dared notgo straight.” Despite these severe symptoms, for many years they viewedtheir mother’s behavior in somato-psychic terms, as “old age illness,” anormal, age-related illness that results from the nerves being “confused”and leads to the mind becoming “confused,” especially when the moon isfull.

They recalled that when they sought advice about these problems froma family physician, who is himself ethnic Chinese, he told them that thesechanges were normal for old people, stating that “she is an old lady.”Eventually, however, her symptoms became too difficult to manage. In thefollowing narrative, the wife describes the hardship of caring for her andthe family’s decision to place her in a nursing home:

In the first year we moved here, [when] she fell on the floor, the children could not helpher up. It was extremely difficult to pull her up. Sometimes, she did not eat. I told her thatif she continued to refuse to eat, she would starve herself to death. She was angry aboutwhat I said, because I seldom talked to her like that. I also told her that I would not carefor her anymore if she continued to behave like that. You know, I was already very tiredfrom work and I had to rush back to cook. After the meal had been prepared, she oftenrefused to eat. I was very angry. I yelled at her. She disliked it. Once she refused to talk tome and was very quiet, I thought she had fainted! I was scared when she did not respondto my yelling so I dialed 911. The ambulance people arrived, they checked her, but shedidn’t respond. So they decided to take her to the emergency ward. When she was in theambulance, she opened her eyes and asked where they were taking her. I was furious withher and she refused to go. When we arrived at the emergency room, a doctor checked her.We returned home at 2:00 am. I was so tired, and I had to clean her room, which smelledterrible. She always refused to take baths, so I had to drag her into the bath on my day off.When she did not like something, she cursed at me. So I could not take it anymore. I talkedto a social worker and he agreed that the environment was unsanitary for the kids and itwas illegal to live like that and I had to send her to a nursing home.


On the advice of this social worker, they sought the opinion of anotherdoctor in Chinatown who agreed with them that their mother was ill with“memory loss” and signed papers that were instrumental in having herquickly admitted to a nursing home. Through their conversations with thisdoctor, they learned that their mother was “mentally disordered.” However,at the very end of their narrative, the Wongs provided us with a finalexplanation of their mother’s behavior:

Mrs. Wong: Old people change. In Chinese there is a saying, “When a person gets old, hechanges into a baby.” The elder will change into a baby. When people get old, the mindwill –Mr. Wong: RegressMrs. Wong: They don’t know what they are doing.Interviewer: From what I hear you saying, you don’t blame her. You believe that it is theway that the elders are bound be behave.Mrs. Wong: We were prepared for this to come out. We tried to manage the problem aslong as we could till we had to give in.

Ultimately, the mother’s behaviors are understood as an “unavoidable”consequence of old age. The story is a testament to the Wongs’ persever-ance in the face of the many problems resulting from the elderly mother’sdifficult behaviors. The description of her progressively more difficultbehaviors anticipates the story’s end – nursing home placement. In theend, the Wongs’ decision to place the elderly mother in a nursing homeis rendered understandable, even moral. The story justifies its ending andthe reader is left with a view of the Wongs as people who, in their ownevocative phrase, have “loving hearts for the family.” Thus, in contrast tothe first set of stories, which emphasize a pathological disease process inthe brain, the Wongs’ story and those of several other Chinese-Americanfamilies we interviewed focused on managing old-age disabilities and onthe moral behavior of family members.

NARRATIVES OF EXTREME LONELINESS AND FAMILYLOSSES

And that’s what happens with those people, people that age, get sad, everything, why?Because they start thinking “I became like this, old, and no one loves me. I have no oneto share things with. The family is no longer together. People have left. They’ve forgottenme,” and their minds start wasting away. They lose their vision. They lose everything. (Mrs.Lopez, caregiver for her father-in-law)

When we met Mrs. Lopez, she had been caring for her husband’s father,Señor Lopez, for five months, since his arrival from Puerto Rico. Herhusband worked as a custodian at a local college to support the family.


They lived in Lawrence, a medium-sized city in central Massachusettswith a very large Puerto Rican community. Señor Lopez’s illness beganseveral years before he came to the United States, while several adultchildren in Puerto Rico were caring him for. Doctors in Puerto Rico toldthe family that Señor Lopez was “losing his mind, a little” because of“blood clots in his brain” and “strokes.” Although she didn’t reject thisprofessional construction, she had her own ideas about why old peoplelose their minds. She related a story about family events that framed SeñorLopez’s problems in psychosocial terms. After Señor Lopez lost his wifein 1988, he suffered terrible loneliness and sadness. When the elderly arein such a state, they need the support and love of the family or else theymay “think too much” and eventually lose their minds. This, in her view,is exactly what happened to Señor Lopez. Mrs. Lopez blames other familymembers who have neglected him, making him more vulnerable to thesepainful emotions. She does not express sadness about Señor Lopez being achanged or different person. Instead, she laments the loss of proper familylove, respect and caring for Señor Lopez.

Many of the Latino families we interviewed told similar stories.Because caregivers often were not living with the elder at the time theillness began, they were unable to describe the onset of the illness in muchdetail. Elders often began to experience symptoms and disabilities whilethey were in Puerto Rico with other family members or while living alonein the United States. For those elders who were living in Puerto Rico at thestart of the illness, desire for better health care often motivated the moveto the United States. Dementia-related changes were assessed in primarycare settings, where families first learned of the diagnosis of Alzheimer’sdisease or dementia. Sometimes they mentioned that a psychiatrist hadinitially evaluated the elder. In contrast to many of the Irish-American andAfrican-American caregivers, however, none of the Puerto Rican familieshad sought care in memory loss clinics or participated in support groups.11

The onset or worsening of Alzheimer’s disease or dementia was linkedto traumatic events in the family, and to the elder’s experience of painfulemotions, especially loneliness. Alzheimer’s disease, or dementia, wasunderstood in relationship to larger, often tragic stories about familiesfragmented and stressed by migration and resettlement, discrimination,generational neglect of filial responsibilities, tragic deaths, economic hard-ship, or the ravages of addiction.12 Several family caregivers, for example,recalled that younger family members left the island in order to seek bettereconomic opportunities elsewhere, leaving older people alone and vulner-able to the ravages of loneliness. For other families a severe shock, suchas the death of a child, was identified as the root cause. For example, one


family, shattered by the murder of a daughter, located this trauma at thecore of their psychosocial explanation of the cause of Alzheimer’s diseaseas well as other illnesses within the family.13 Ultimately, these traumas andfamily neglect cause the elder to feel much sadness or loneliness, resultingin the person “losing their mind” and becoming forgetful or childish.

Mrs. Reyes’ narrative provides another example of this story type. Sheis a 45-year-old single, working, Puerto Rican woman who was identifiedthrough a health clinic that serves many Latinos in a large city outside ofBoston. The interview took place in her home and included her sister. Shedescribed how her mother came to live with her:

Well, my father was hospitalized eight years ago because he had suffered a stroke and hehas a terminal illness. So, she [my mother] was like alone with my younger brother and myyounger sister. Later, they each graduated from school. Well, my younger brother did andhe left with his girlfriend. And my younger sister went to live with me. And my motherwas left alone. So I guess within time she started going back mentally, suffered a diabeticattack, and she couldn’t be left alone. And there were family problems, a lot of familydrugs, alcohol – she was an alcoholic herself. And every time she got a check, they would,you know, go over there. But when she needed something, nobody would show up. I wouldbe the only one doing things for her. . . . So she started getting ill and ill and ill. And it got toa point where she would burn things. There was, it was getting dangerous and the managerfrom the [apartment building] would constantly call me. They were always telling me tocheck up on her, which I did. And she just couldn’t handle herself anymore. She was forcedto live with me.

Ms. Reyes knew about Alzheimer’s disease because, as she put it, “I seenit on TV. I’ve read pamphlets on it. I’ve researched it. And it progressesand it’s getting worse.” She took her mother to see a family physician whodiagnosed her with the disease.

When asked what brought her mother’s illness on, Ms Reyes said itwas the loss of her husband. She then told us about a string of tragediesthat befell her father. First, while involved in a bitter labor dispute as arepresentative for the union, he was the victim of a car bombing. Aftermaking a slow recovery from that injury, he was maimed in a terrible work-related accident. Finally, he was severely disabled by a stroke and nowrequires 24-hour institutional care:

I mean I remember everything. It was like 15 minutes to ending time, and there’s a clamp,you know, there a machine, it was parts for an airplane, and there’s a machine that clampsdown underneath you, like when the nail goes down, one of those little nails makes a littleflywheel. Well that went out of his hand, and right into his eye. [He] loses his eye. And he’sin the hospital several days, and then after that, like two or three months down the road hehas a stroke. So he’s paralyzed on the left-hand side. And right now, my dad needs to befed. You know everything. Everything he says is the same thing. That shouldn’t happen tomy mama. That shouldn’t happen to my dad.


This string of tragedies is central to Ms Reyes’ narrative because she viewsit as one important cause of her mother’s Alzheimer’s disease. As a resultof her husband’s traumatic injury and institutionalization, she experiencedprofound sadness and loneliness that, when combined with neglect bycertain members of the family and use of alcohol, led to her mental decline.

Rather than being seen as a mysterious disease entity, in these narra-tives Alzheimer’s disease is viewed as a consequence of painful familytragedies still very fresh in the minds of those we interviewed. Most PuertoRican caregivers, while accepting the biomedical label and the incurablenature of the disease, placed disease along a continuum of psychosocialdistress that de-stigmatized the illness. This finding is similar in somerespects to the finding of Jenkins, who investigated conceptions of schizo-phrenia among Mexican and Anglo families (1988). She found that evenafter formal diagnosis, Mexican family members were likely to view theproblem as one of “nerves,” an illness label that is less stigmatizing thanschizophrenia and which preserves more hope of future cure. Similarly,to view Alzheimer’s as the result of emotional trauma likely to adverselyaffect anyone is to render the disease and its impact on the aging mindand body more understandable and ultimately less stigmatizing. Latinocaregivers in our study did this by placing ideas about the nature and causeof Alzheimer’s disease in larger stories about the family and about threatsto it due to loss, migration, death and conflict.

CONCLUSION

Several types of stories were identified in this analysis of interviewswith ethnically diverse families caring for someone who has received adiagnosis of Alzheimer’s disease or a related disorder. Each different storytype configures moral concerns in a particular way, thereby revealing muchabout how they experience dementing illness, about what is “at stake”for them in caring for relatives who are often quite disabled.14 Storiesabout “deteriorating brain cells” and “loss of identity” direct the moralfocus to the realm of individual biology, to the ravages of a perniciousand mysterious disease entity. The remaining two story types shift thefocus to the social realm, where they serve as moral commentary on thefamily. For a subset of Chinese families, stories about “old age illness”normalized Alzheimer’s disease, emphasized management of disabilitiesand brought into focus how family members had or hadn’t lived up to theirfilial obligations. Finally, a subset of Latino caregivers told stories thatplaced the onset and course of dementing illness in the context of storiesabout the family as it is affected by migration, separations, and death. The


elder’s memory loss is viewed in psychosocial terms as an understandableresponse to these emotional traumas.

Ethnic identity was linked to familiarity with and use of particularnotions of health and illness, with particular social histories, such as familymigration, and with the use of local networks of health care providersand institutions. In this way, ethnicity can be regarded as a set of culturalresources and shared experiences caregivers draw upon to interpret andconstruct narratives of Alzheimer’s disease.15 Yet other meanings crossethnic boundaries. For example, the equation of Alzheimer’s and “lossof self” is part of a popular discourse on the illness in American societythat was found among caregivers in three of the four ethnic groups. Aquestion raised by this analysis is whether caregivers, when confrontedwith an aging and disabled family member, may draw in part on culturalknowledge that is narratively organized. Culture may provide not onlyabstract notions about the nature and cause of illness, but also prototypicalstories to help make sense of the forgetfulness, confusion, and disabilitythat sometimes accompanies old age.16

In each type of story, biomedical and folk understandings ofAlzheimer’s disease are combined. The use of more open-ended interviewsallowed this mosaic of interpretations of Alzheimer’s disease to emerge inways that would be much more difficult to capture with more structuredapproaches. The stories also point to distinctive “cultures” of health care asquite important in shaping caregivers’ interpretations of dementia-relatedchanges. All of these narratives include descriptions of encounters withpractitioners of biomedicine. Yet the biomedical model is communicatedto families in quite diverse ways and in widely divergent settings, fromthe private offices of primary care physicians practicing in Chinatownto the offices of neurologists at university hospital-based memory lossclinics. In these local settings, biomedical knowledge, divergent physi-cian approaches to disclosure of diagnosis and styles of communicationand family perceptions come together to configure illness meanings andexperience in distinctive ways. From this perspective, we suggest, thesedata highlight the need to move beyond “ethnic” differences to examinein a detailed, ethnographically-informed way how experiences within thelocal cultures of families and institutions mediate the re-interpretation ofbiomedical discourse, its combination with popular knowledge, and itsadaptation to particular lives. This would reveal how globalizing biomed-ical discourse and practices are made “local” in American urban settings(Good 1995). Configurations of meanings are not static, but change overtime as caregivers share information with their social network of family,friends, health care providers, and support groups. A multifaceted and


longitudinal view of the social processes through which illness meaningsand experiences are generated opens up new avenues for research on aging,Alzheimer’s, ethnicity and family experiences of illness and care.

ACKNOWLEDGMENTS

We wish to thank Alexander Hinton, Anne Becker, Carolee Tran, Mary-JoDelvecchio Good, and Byron Good for their helpful comments on earlierdrafts of this manuscript. We thank the research team, including ZibinGuo, Madelyn Hicks, Jennifer Hillygus, Mabel Lam, Ana Ortiz, and JanieSimmons for assistance with data collection and for their collaboration onthis research project.

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.

NOTES

1. We have used pseudonyms and changed certain demographic information in order toprotect the confidentiality of study participants.

2. See the Introduction to this issue by Hinton et al. for a more complete description ofthe overall project.

3. Here and throughout the rest of this paper, we use the term Alzheimer’s to refer toAlzheimer’s disease and related dementias, a group of conditions that share a set offeatures, including cognitive impairment and disability.

4. While there is an enormous literature in cultural anthropology and sociology that takesas its focus the diversity within cultures, or societies, our work has been influencedby the recent work of Barth (1994) and Hannerz (1994). In work on Alzheimer’sdisease, see Cohen’s ethnography for attention to the influence of class, gender oninterpretations of Alzheimer’s in India (1998).

5. This is not simply a phenomenon that exists in “high-income” societies such asthe United States, but that is prevalent throughout the world, providing yet anotherexample of the global reach of biomedical categories and practices.

6. In the gerontological literature, this is explained as a “loss” that occurs later inthe disease process; those afflicted with the disease lose the capacity for “insight”regarding their cognitive deficits and the functional decline that is afflicting them.

7. In the general population, only a relatively small proportion of the elderly arediagnosed in memory loss clinics. These clinics are common in large, urban areas,but they are relatively rare elsewhere. The relatively frequent resort to these in oursample is thus not typical of American society at large.

8. Others (e.g., Elliott et al. 1996; Braun et al. 1995) have reported the use of the machinemetaphor; it highlights culturally shaped models of health, aging, and illness.

9. See also Hicks and Lam (1999) as well as Hinton et al. (submitted for publication) formore ethnographic data on the perspectives of clinicians in Chinatown.


10. Because of the recent development of “cognitive enhancing” drugs that are well-tolerated, there is currently more reason for optimism about being able to delay theprogression of cognitive impairment in a subset of patients. These interviews wereconducted in 1993–1994, just as empirical data were emerging to support their use inprimary care settings.

11. This may be due, in part, to the lack of Spanish-speaking professional staff in theseclinics.

12. See also Ortiz et al. (1999).13. See Ortiz et al. (1999) for a much more detailed description of this case.14. Kleinman and Kleinman use the term “at stake” to identify that which is most

important from the perspectives of the participants in a social encounter. To understandwhat is “at stake” requires an analysis using experience-near categories (1991).

15. In this respect, our analysis provides further support for this general view of ethnicitythat has been described by Holzberg (1982) and more recently by Kramer and Barker(1994) and Henderson (1994).

16. For example see Good’s discussion of narrative theory and medical anthropology(1993) as well as a special issues of Social Science and Medicine devoted to narrativetheory and illness representations (Mattingly and Garro 1994).

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Department of PsychiatryUC Davis Medical CenterSacramento, CAUSA

Constructing Alzheimer's: Narratives of Lost Identities, Confusion and Loneliness in Old Age

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