W.

LADSON HINTON and SUE LEVKOFF

CONSTRUCTING ALZHEIMER’S: NARRATIVES OF LOST

IDENTITIES, 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 is
used to show how family caregivers draw on their cultural and personal resources to create
stories 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 identified
and described, each with a distinctive configuration of illness meanings and overarching
theme, or storyline: a subset of African-American, Irish-American, and Chinese-American
caregivers told us stories about Alzheimer’s as a disease that erodes the core identity of
a loved one and deteriorates their minds; a subset of Chinese caregivers narrated stories
that 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’s
illness in stories about tragic losses, loneliness, and family responsibility. To construct their
stories, caregivers drew upon both biomedical explanations and other cultural meanings of
behavioral and cognitive changes in old age. Their stories challenge us to move beyond the
sharp contrast between ethnic minority and non-ethnic minority views of dementia-related
changes, 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 just
like at that program [Alzheimer’s disease support group], this lady, she absolutely denies
that her mother’s alive. “She’s not my mother. She’s not who I know her to be. She doesn’t
know 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 to
laugh, when to cry. Because I could say, something really bad, [and] she’ll look at me and
laugh. Okay? Having your own mind is your identity. That’s your identity. That’s what you
are. . . . It [Alzheimer’s disease] robs you, you know. But if you just have a heart attack, and
still get along, you just have to walk a little slower, or maybe do a little more walking, or
whatever, you know, exercise to get yourself back in shape. If you have a stroke and get

Culture, Medicine and Psychiatry 23: 453–475, 1999.

© 1999 Kluwer 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 regain
that 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 mother 1 )

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. Jones
has “learned” about her mother’s illness and how it affects a person’s mind
through participation in an Alzheimer’s disease support group. Reflecting
on the words of another group member, she wonders if her own mother
is still there, still alive. Who has she become? As she describes how
the illness has changed her relationship with her mother, she expresses
sadness, anger, and, in other parts of the interview, fear. The theme of lost
identity runs throughout Mrs. Jones’ interview as she describes the onset
of her mother’s illness, the family’s search for a diagnosis, and the day-to-
day experiences of caregiving as her mother became progressively more
dependent and disabled.
In their review of illness representations in medical anthropology, Good
and Farmer assert that ideas about the nature and cause of illness often
occur 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 structure
of illness accounts (Garro 1992; Good 1993; Kleinman 1988) and of clin-
ical interactions (Good et al. 1994; Mattingly 1994). Our analysis is 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.2 We analyze how these family care-
givers weave together meanings of Alzheimer’s disease3 with key life
events, affective dimensions of experience, and personal history in their
accounts of illness. We use a narrative approach both to show how family
caregivers draw on these cultural and personal resources to create stories
about the nature and meaning of illness and to ask how ethnic identity may
influence the kinds of stories family caregivers tell.
Three different story types are identified and described, each with
a distinctive configuration of illness meanings and overarching theme,
or storyline. Storylines differed across and within the four ethnic
groups. 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 one
and deteriorates their minds. The two remaining types of stories construct
the illness in other ways. A subset of Chinese caregivers narrated stories
 CONSTRUCTING ALZHEIMER’S 455

that emphasized how families managed confusion and disabilities, changes

ultimately construed as an expected part of growing old. Finally, a subset
of Puerto Rican and Dominican families, while using the biomedical label
of Alzheimer’s disease or dementia, placed the elder’s illness in stories
about tragic losses, loneliness, and family responsibility. To construct
their stories, caregivers drew upon both biomedical explanations and other
cultural meanings of behavioral and cognitive changes in old age. Their
stories challenge us to move beyond the sharp contrast between ethnic
minority and non-ethnic minority views of dementia-related changes, to
local clinics and hospitals as sites where biomedical knowledge is inter-
preted, communicated, discussed, and adapted to the perspectives and lived
realities 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 disabilities
are viewed as part of normal aging or as part of a disease process, they
evoke behavioral and meaning making responses from those in the afflicted
person’s social network. Particularly in large, multiethnic societies, these
social responses to disabled elders are informed by a variety of cultural
models. Yet for any given individual or family within such societies,
behavioral and interpretive options are constrained by social positioning
based on such characteristics as ethnicity, race, class, gender, religion
and 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 and
behavioral changes in old age (Henderson 1990; Pollitt 1996; Smith 1996).
Cross-cultural research, conducted largely by anthropologists, highlights
cultural constructions of memory loss, behavioral changes, and disabil-
ities in old age that differ from the biomedical model of disease (Barker
1997; Cohen 1998; Ikels 1997; Pollitt 1997). Cohen’s work in India, for
example, shows that angry outbursts rather than memory loss are most
salient for some families living with an elder manifesting what would
likely be biomedically labeled as Alzheimer’s disease (1995). He identi-
fies popular idioms whose descriptive characteristics map imperfectly onto
those of professional disease categories. Based on fieldwork in Polynesia,
Barker has found that older adults with dementia symptoms are often
456 W. LADSON HINTON AND SUE LEVKOFF

assumed to be entering a normative, liminal state between life and death

(1997). Ikels reveals how a number of factors, including low expectations
of elders with little formal education, cultural stereotypes of the elderly,
and multiple co-existing medical problems, lead to little concern and fear
about memory loss among elders in rural China (1989, 1997). Studies
of ethnic minority groups in the US describe views of dementia-related
changes as a normal result of the aging process (Braun et al. 1995; Elliott
et 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 reveal
the cultural, historical, and political dimensions of the Alzheimer’s disease
construct (Cohen 1998; Estes and Binney 1991; Herskovits 1995; Lyman
1989; Gubrium 1986). Historical studies show that economic and social
forces as well as scientific discoveries have led to the social construc-
tion of Alzheimer’s as a disease category (Estes and Binney 1991; Fox
1989; Gubrium 1986). Widespread public acceptance of the Alzheimer’s
disease construct has led to what some describe as the “biomedicaliza-
tion of aging,” a process through which the troubles of older adults are
redefined as medical problems, leading to increasing medical influence
over the lives of older people (Estes and Binney 1991; Lyman 1989).5
In American society, the disease carries a stigma because the symptoms
and disabilities “transgress core cultural values,” such as autonomy and
productivity (Herskovits and Mitteness 1994). As a result, the person with
Alzheimer’s disease is viewed as less than fully human, as having lost his
core self or personhood (Herskovits 1995).
Policy makers and health care providers in the United States continue
to be concerned that knowledge about Alzheimer’s disease (AD) is
not reaching certain segments of American society, particularly ethnic
minority groups. For example, a report by the Advisory Panel on
Alzheimer’s Disease concludes that some members of ethnic minority
groups may “share concepts and attitudes about AD held by the larger
society” while other members may rely on “culture-specific constructs”
(1992, p. 36). Studies of ethnic minority groups in the United States often
focus on their “culture-specific” views of cognitive and behavioral changes
in old age, reinforcing a dichotomy between biomedical and “minority”
views of dementia-related changes (e.g., Elliott et al. 1996; Braun et
al. 1995). When the sources and implications of intraethnic diversity go
largely unexamined, ethnic minority groups are treated as mini-cultures
within the larger society. Furthermore, this approach assumes an anachron-
istic view of culture as a top-down, hegemonic patterning of health-related
beliefs, attitudes, and practices (Hinton and Kleinman 1993). In the multi-
 CONSTRUCTING ALZHEIMER’S 457

cultural context of urban America, some families may draw on biomedi-

cine to understand dementia-related symptoms, while other families may
draw on models of health and aging from other medical traditions (e.g.
traditional Chinese medicine or Ayurvedic medicine) or nonprofessional
folk 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 anthropology

that draws on narrative theory. This section reviews this literature and
then describes our approach to analysis of these caregiver narratives. The
following review is not meant to be exhaustive, but rather highlights
research 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 that
everyday knowledge about the social world is often organized cogni-
tively in the form of stories. This is particularly true when situations
deviate from what is expected or normal. Many such situations occur
during the onset and unfolding of chronic illnesses such as dementia. For
example, dementia-related changes in behavior, cognition, and self-care
may threaten to cross the line separating the normal from the abnormal.
In addition, the social responses of family, neighbors, and health care
providers may deviate from expected roles and obligations in relationship
to the person who is ill.
Illness stories often contain representations woven into a tale about
specific people, places and events. They reconstruct past events and exper-
iences from the standpoint of the present and may be well rehearsed
or attempts at making meaning “on-the-fly” (Garro 1992; Hyden 1997).
Stories may serve a meaning-making function by providing an opportunity
to adapt cultural models of health and illness to personal circumstances
and biography (Early 1982). Seemingly contradictory cultural models or
explanations may be combined in ways that would be difficult to capture
with more structured approaches to information gathering, such as close-
ended questions (Mattingly and Garro 1994). A good illustration of this
is 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 to
choose from a pre-determined list.
The illness story’s “overall configuration” may point to larger themes
or storylines that reveal important moral and ethical dimensions of human
458 W. LADSON HINTON AND SUE LEVKOFF

experience (Bruner 1990). Frank (1995), for example, has analyzed literary
accounts of chronic illness and identified three story types based on over-
arching themes of restitution, chaos, and quest. In his view, stories are
more than individualistic attempts at meaning making; they are forms of
public testimony. As such, stories can be regarded as “speech acts” in
particular contexts serving strategic purposes (Farmer and Good 1991).
Price’s (1987) work in Ecuador, for example, suggests that narratives of
illness may be viewed as attempts to represent one’s actions as justified and
moral, or to bring attention to how another’s behavior deviates from cultur-
ally prescribed caregiving roles. Narratives may also be future-oriented. In
their work with people who had suffered from seizures and their families
in Turkey, Good and Good (1994) illustrate that family stories had a
“subjunctive” quality that served to keep open multiple possibilities for
future outcomes.
In this paper, we used a narrative approach to analyze unstructured
interviews with family caregivers of elderly who had been diagnosed
with Alzheimer’s disease or a related dementia. The introduction to this
volume contains a description of our method of selecting the sample
and conducting the interviews. In brief, in-home, open-ended interviews
lasting two to four hours were conducted in the family caregiver’s preferred
language (i.e., English, Spanish, Mandarin or Cantonese) Interviews were
structured only by the use of an interview guide which outlined domains
of 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 were
given considerable latitude to explore these domains and to develop themes
that emerged during the course of the interview. Interviews were tape-
recorded and then later transcribed. For this analysis, English-language
transcripts of all interviews were used. All of the interviews were first read
for thematic content and then coded for ideas about the nature and cause
of 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 of
overarching themes, or storylines related to the meaning of illness. We
now turn to our analysis of caregiver narratives.

NARRATIVES OF LOST IDENTITIES AND DETERIORATING

BRAINS

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,
 CONSTRUCTING ALZHEIMER’S 459

the old movie actor still looks the image of vigorous good health, the truth is that the man
behind the firm handshake and barely gray hair is steadily, surely ebbing away. (Altman
1997, p. 1)

Entitled A President Fades into a World Apart, this New York Times
article describes the impact of Alzheimer’s disease on former President
Reagan and his family and friends. Toward the end, the author observes:
“Many longtime friends and aides say they find it too painful to compare
the Ronald Reagan afflicted with Alzheimer’s with his former self. Many
visit only rarely; many no longer see him at all.” This article shows
how Alzheimer’s disease is linked to memory loss, brain pathology, and
loss of self, creating a set of linked symbolic meanings that Good has
referred to as a “semantic network” (Good 1977). The cognitive decline
and progressive disabilities are viewed as outward signs of an insidious
inner process – the deterioration of the brain and the erosion of a person’s
core personality and selfhood – about which the afflicted person has little
awareness.6
This set of meanings organizes the stories told to us by a subset
of the African-American, Irish-American, and Chinese caregivers. They
described the gradual onset of changes that were often “mistaken” for
depression, stress, or just old age. Eventually, however, a spouse or
adult child became concerned enough to seek assessment and diagnosis
within the formal health care system. Their pathways to diagnosis
sometimes began in primary care settings but always led to memory
loss 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 is
to comprehensively evaluate dementia through physical exams, laboratory
tests, cognitive assessments, and brain scans in order to rule out rare, but
treatable 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 caregivers
participated in Alzheimer’s support groups sponsored by the Alzheimer’s
Association.
Mrs. Williams’ interview illustrates this story type. She is a 63-year-old
African-American woman with one year of college education who worked
as a customer service representative at a local hospital and cared for her
65-year-old husband in their home. She describes how she first recognized
and then sought help for her husband’s memory loss:
I can say that it started, possibly, before he retired. Which was . . . in January of 1990.
Before that he used to forget things. He was never good with memory anyway. But this
time, I mean, gradually he got so that we were arguing. I would tell him, “We’re going to
460 W. LADSON HINTON AND SUE LEVKOFF

such a place, or someone’s coming here, or we have to do such-and-such, so-and-so.” And

I would tell him, like, today. The thing would come up and he’d tell me, “Well, why didn’t
you tell me?” I said, “I did tell you.” And we would argue about this. So, it got worse and
worse 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; because
I think he’s, he’s forgetting too much.” And so they told me. And I said, “Okay, I’m going
to make an appointment.”

After consulting with co-workers, Mrs. Williams took her husband to a

memory loss clinic. There, her husband was diagnosed with Alzheimer’s
disease, confirming her suspicions. She was referred to a number of
supportive services, including an Alzheimer’s support group she later
attended regularly. As her husband’s illness progressed, the support group
helped her learn how to manage difficult behaviors and cope with difficult
emotions.
Eventually, Mr. Williams depended on his wife for nearly everything, a
complete reversal of the situation before the illness. As Mrs. Williams put
it, “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-year
old,” a completely different person. Mrs. Williams sums up the meaning of
his 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. The
person that you met before, you married before, to someone who’s entirely different. And
it’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 the

disease, other caregivers struggled to come to terms with this issue. Miss
Chow, a 29-year-old Chinese-American college-educated woman who was
caring for her parents in Boston’s Chinatown, described how she initially
attributed her mother’s confusion to poor vision. She was shocked when
an ophthalmologist said her mother had Alzheimer’s disease. She took
her mother for a diagnostic work-up at a memory loss clinic where the
diagnosis was confirmed. Miss Chow uses a wide array of formal services
to 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 physiological
and neurological changes. She stressed that it’s “not just memory loss.” She
struggled to come to terms with the disease’s effect on her mother’s core
personality, or self:
People say, “Oh, you know, you have to treat her like, you know, she has a disease. She’s
not 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
 CONSTRUCTING ALZHEIMER’S 461

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

Treating difficult behaviors as a consequence of the disease process

and out of the person’s conscious control is encouraged in caregiver
support groups and self-help guides to caregiving, such as the 36-Hour
Day (Mace and Rabins 1981). The person with AD is not responsible for
his actions because the disease has control. This view is clearly articulated
in this piece of narrative from the interview with Mrs. O’Leary, a 45-year-
old Irish-American woman with a college degree who also participated
actively in an Alzheimer’s support group. She describes the struggle she
went 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 as
much as that, that seemed reasonable when she wasn’t there, I felt that there were often
times that my mother was being obstinate just to be obstinate. . . . But it was a lot easier for
my sister to say, that’s not my mother; this is the disease; and let it roll off her back. It was
hard for me to let go in two ways. One, to say that’s the disease, not my mother, and let
go 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 go
of 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 give
up hope that her mother is still there. It allows her to grieve the loss of her
mother and to manage the painful emotions evoked as one witnesses the
decline of a loved one.
These narratives construct dementia-related changes as signs of deteri-
orating brains and of diminished selves. Specialists in memory loss clinics
and 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 or
any other clinical criteria for Alzheimer’s disease, within these narra-
tives this popular cultural idiom is seamlessly combined with biomedical
understandings. It has become part of a popular discourse of Alzheimer’s
widely disseminated through the public media, one that imposes a kind
of “social death” on the afflicted person (Sweeting and Gilhooly 1997;
Herskovits 1995). Though the person is there physically, a discontinuity
exists between his identity before and after the onset of the illness. The
idiom of “loss of self” simultaneously expresses and constructs feelings of
grief and sadness on the part of the family; it represents a powerful cultur-
ally shaped meaning of Alzheimer’s in contemporary American society
that crosses ethnic boundaries.
462 W. LADSON HINTON AND SUE LEVKOFF

NARRATIVES OF CONFUSION AND DEPENDENCY IN OLD

AGE

In contrast to the previous set of interviews, a subset of Chinese caregivers

related the elder’s illness to traditional Chinese notions of aging and health
that 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’s
Chinatown near the senior housing complex where her mother lives. She
described a series of events that made it clear to her that her mother could
no longer care for herself. For example, on one occasion her mother was
observed standing outside in the rain beside the street. When her house-
keeper asked her what she was doing, she replied “It is raining and there
is a war.” She wanted to go the bank and withdraw all her money. Her
mind, it seemed, had drifted back to a time when people believed a heavy
rain 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. Lee
decided that something had to be done. A convenient solution was for her
mother to attend a nearby adult day health program that served daily meals
and catered to Chinese elders. To qualify for these services, however, her
mother 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 the
time her mother was diagnosed, Mrs. Lee referred to her mother’s condi-
tion as an “illness,” as “abnormal.” However, she returned again and again
to a description of her mother’s condition as an expected part of the aging
process. To explain what happens to the aging body and mind, she used
the metaphor of a machine that breaks down over time:
Mrs. Lee: . . . She is like the very old. It is not like she is in her hundreds. But she doesn’t
remember things. But when I see these crazy people, they are about in their sixties. There
is 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 shaped

metaphor that expresses a holistic notion of health and aging.8 It deflects
the stigma of mental illness, a concern given her mother’s behavior, and
removes responsibility from the elder and his or her family by normalizing
confusion, memory loss and disability in old age. Mrs. Lee later revealed
that a nurse who works with her mother’s primary care doctor had used
this metaphor to explain the nature of her mother’s memory and behavior
problems.
 CONSTRUCTING ALZHEIMER’S 463

Like Mrs. Lee, other Chinese families in this subset of interviews

do not regard “early” or “mild” symptoms of dementia as particularly
ominous or noteworthy. This may be due in part to traditional Chinese
views of old age as a time when some people may become more confused
and childlike (Ikels 1989). Experiences in the local culture of healthcare
in Boston’s Chinatown also play a role. Health care providers, many of
them ethnic Chinese, emerge in a number of these stories as advocates
of traditional Chinese views of old age that normalize old age confusion
and dependency. In other stories, health care practitioners seem to draw
on both biomedical and traditional Chinese models in their discussions
with families about the nature and cause of dementia.9 Ethnographic data
gathered in this study based on interviews with a number of these providers
suggest that, while aware that their patients have Alzheimer’s disease or
another type of dementia, they see little benefit in “burdening” elders and
their families with a potentially stigmatizing diagnostic label that carries
with it little hope of cure.10 Instead, they use explanations they view as
more culturally accepted and reassuring. Chinese families’ recollections of
encounters with their health care providers help to explain why traditional
Chinese views of old age are not supplanted by biomedical views, even
after formal diagnosis of Alzheimer’s disease or dementia.
Stories about the family doctor also help to explain why formal
diagnosis, at least as told from the family’s perspective, occurs later in
the course of the disease. Troubles begin when older people experience
considerable disability that is typical of more advanced dementia, such as
difficulty with dressing, bathing, and eating. The search for diagnosis is
triggered by practical needs, such as qualifying for entitlements that allow
the elder to receive services, rather than worry about failing memory or
other cognitive impairments. As these more serious disabilities emerge
and the family seeks care for them in social service agencies and health
care clinics, families learn that the elder’s behaviors and disabilities are
the result of a “disease.” Yet alternative, nonmedicalized views of old age
troubles 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-American
and African-American counterparts. It was not so much the disease, but
rather the disabilities that flow from it that most concerned families. These
disabilities, often described in quite a detailed fashion, place demands
upon the family, especially when they interfere with a person’s ability
to live independently. The focus of their stories was on how family
members had, or in some cases had not, lived up to their filial duties.
They stressed endurance and perseverance in the face of these difficulties.
464 W. LADSON HINTON AND SUE LEVKOFF

Their stories are often constructed to reveal the moral fiber of family
members.
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 the
family migrated to the United States from Burma, Mr. Wong had hopes of
getting a college degree. However, economic hardship and a strong sense
of duty and obligation to the family dictated that he forgo college and
take a job as a cook in a Chinese restaurant in order to sponsor brothers
and sisters who remained in Burma. Mr. Wong and his wife first became
concerned about his mother when they noticed that at times she would “talk
nonsense” and get lost in the neighborhood. Over time, her symptoms and
disabilities got progressively worse. They described how she defecated on
the floor, kept everyone up at night by constantly pacing, wandered, cursed
at others, and hallucinated: “When she hallucinated, she jumped from spot
to spot, saying that there were puddles of water or snakes, and she dared not
go straight.” Despite these severe symptoms, for many years they viewed
their mother’s behavior in somato-psychic terms, as “old age illness,” a
normal, age-related illness that results from the nerves being “confused”
and leads to the mind becoming “confused,” especially when the moon is
full.
They recalled that when they sought advice about these problems from
a family physician, who is himself ethnic Chinese, he told them that these
changes were normal for old people, stating that “she is an old lady.”
Eventually, however, her symptoms became too difficult to manage. In the
following narrative, the wife describes the hardship of caring for her and
the 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 help
her up. It was extremely difficult to pull her up. Sometimes, she did not eat. I told her that
if she continued to refuse to eat, she would starve herself to death. She was angry about
what I said, because I seldom talked to her like that. I also told her that I would not care
for her anymore if she continued to behave like that. You know, I was already very tired
from work and I had to rush back to cook. After the meal had been prepared, she often
refused to eat. I was very angry. I yelled at her. She disliked it. Once she refused to talk to
me and was very quiet, I thought she had fainted! I was scared when she did not respond
to my yelling so I dialed 911. The ambulance people arrived, they checked her, but she
didn’t respond. So they decided to take her to the emergency ward. When she was in the
ambulance, she opened her eyes and asked where they were taking her. I was furious with
her 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 smelled
terrible. 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 talked
to a social worker and he agreed that the environment was unsanitary for the kids and it
was illegal to live like that and I had to send her to a nursing home.
 CONSTRUCTING ALZHEIMER’S 465

On the advice of this social worker, they sought the opinion of another
doctor in Chinatown who agreed with them that their mother was ill with
“memory loss” and signed papers that were instrumental in having her
quickly admitted to a nursing home. Through their conversations with this
doctor, they learned that their mother was “mentally disordered.” However,
at the very end of their narrative, the Wongs provided us with a final
explanation of their mother’s behavior:
Mrs. Wong: Old people change. In Chinese there is a saying, “When a person gets old, he
changes into a baby.” The elder will change into a baby. When people get old, the mind
will –
Mr. Wong: Regress
Mrs. 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 the
way that the elders are bound be behave.
Mrs. Wong: We were prepared for this to come out. We tried to manage the problem as
long 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’s
difficult behaviors. The description of her progressively more difficult
behaviors anticipates the story’s end – nursing home placement. In the
end, the Wongs’ decision to place the elderly mother in a nursing home
is rendered understandable, even moral. The story justifies its ending and
the reader is left with a view of the Wongs as people who, in their own
evocative phrase, have “loving hearts for the family.” Thus, in contrast to
the first set of stories, which emphasize a pathological disease process in
the brain, the Wongs’ story and those of several other Chinese-American
families we interviewed focused on managing old-age disabilities and on
the moral behavior of family members.

NARRATIVES OF EXTREME LONELINESS AND FAMILY

LOSSES

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 one
to share things with. The family is no longer together. People have left. They’ve forgotten
me,” 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. Her
husband worked as a custodian at a local college to support the family.
466 W. LADSON HINTON AND SUE LEVKOFF

They lived in Lawrence, a medium-sized city in central Massachusetts

with a very large Puerto Rican community. Señor Lopez’s illness began
several years before he came to the United States, while several adult
children in Puerto Rico were caring him for. Doctors in Puerto Rico told
the family that Señor Lopez was “losing his mind, a little” because of
“blood clots in his brain” and “strokes.” Although she didn’t reject this
professional construction, she had her own ideas about why old people
lose their minds. She related a story about family events that framed Señor
Lopez’s problems in psychosocial terms. After Señor Lopez lost his wife
in 1988, he suffered terrible loneliness and sadness. When the elderly are
in such a state, they need the support and love of the family or else they
may “think too much” and eventually lose their minds. This, in her view,
is exactly what happened to Señor Lopez. Mrs. Lopez blames other family
members who have neglected him, making him more vulnerable to these
painful emotions. She does not express sadness about Señor Lopez being a
changed or different person. Instead, she laments the loss of proper family
love, 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 the
illness began, they were unable to describe the onset of the illness in much
detail. Elders often began to experience symptoms and disabilities while
they were in Puerto Rico with other family members or while living alone
in the United States. For those elders who were living in Puerto Rico at the
start of the illness, desire for better health care often motivated the move
to the United States. Dementia-related changes were assessed in primary
care settings, where families first learned of the diagnosis of Alzheimer’s
disease or dementia. Sometimes they mentioned that a psychiatrist had
initially evaluated the elder. In contrast to many of the Irish-American and
African-American caregivers, however, none of the Puerto Rican families
had sought care in memory loss clinics or participated in support groups.11
The onset or worsening of Alzheimer’s disease or dementia was linked
to traumatic events in the family, and to the elder’s experience of painful
emotions, especially loneliness. Alzheimer’s disease, or dementia, was
understood in relationship to larger, often tragic stories about families
fragmented 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 better
economic opportunities elsewhere, leaving older people alone and vulner-
able to the ravages of loneliness. For other families a severe shock, such
as the death of a child, was identified as the root cause. For example, one
 CONSTRUCTING ALZHEIMER’S 467

family, shattered by the murder of a daughter, located this trauma at the

core of their psychosocial explanation of the cause of Alzheimer’s disease
as well as other illnesses within the family.13 Ultimately, these traumas and
family neglect cause the elder to feel much sadness or loneliness, resulting
in the person “losing their mind” and becoming forgetful or childish.
Mrs. Reyes’ narrative provides another example of this story type. She
is a 45-year-old single, working, Puerto Rican woman who was identified
through a health clinic that serves many Latinos in a large city outside of
Boston. The interview took place in her home and included her sister. She
described how her mother came to live with her:

Well, my father was hospitalized eight years ago because he had suffered a stroke and he
has a terminal illness. So, she [my mother] was like alone with my younger brother and my
younger sister. Later, they each graduated from school. Well, my younger brother did and
he left with his girlfriend. And my younger sister went to live with me. And my mother
was left alone. So I guess within time she started going back mentally, suffered a diabetic
attack, and she couldn’t be left alone. And there were family problems, a lot of family
drugs, 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 would
be the only one doing things for her. . . . So she started getting ill and ill and ill. And it got to
a point where she would burn things. There was, it was getting dangerous and the manager
from the [apartment building] would constantly call me. They were always telling me to
check up on her, which I did. And she just couldn’t handle herself anymore. She was forced
to live with me.

Ms. Reyes knew about Alzheimer’s disease because, as she put it, “I seen
it on TV. I’ve read pamphlets on it. I’ve researched it. And it progresses
and it’s getting worse.” She took her mother to see a family physician who
diagnosed her with the disease.
When asked what brought her mother’s illness on, Ms Reyes said it
was the loss of her husband. She then told us about a string of tragedies
that befell her father. First, while involved in a bitter labor dispute as a
representative for the union, he was the victim of a car bombing. After
making a slow recovery from that injury, he was maimed in a terrible work-
related accident. Finally, he was severely disabled by a stroke and now
requires 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 clamps
down underneath you, like when the nail goes down, one of those little nails makes a little
flywheel. Well that went out of his hand, and right into his eye. [He] loses his eye. And he’s
in the hospital several days, and then after that, like two or three months down the road he
has a stroke. So he’s paralyzed on the left-hand side. And right now, my dad needs to be
fed. You know everything. Everything he says is the same thing. That shouldn’t happen to
my mama. That shouldn’t happen to my dad.
468 W. LADSON HINTON AND SUE LEVKOFF

This string of tragedies is central to Ms Reyes’ narrative because she views

it as one important cause of her mother’s Alzheimer’s disease. As a result
of her husband’s traumatic injury and institutionalization, she experienced
profound sadness and loneliness that, when combined with neglect by
certain 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 family
tragedies still very fresh in the minds of those we interviewed. Most Puerto
Rican caregivers, while accepting the biomedical label and the incurable
nature of the disease, placed disease along a continuum of psychosocial
distress that de-stigmatized the illness. This finding is similar in some
respects to the finding of Jenkins, who investigated conceptions of schizo-
phrenia among Mexican and Anglo families (1988). She found that even
after formal diagnosis, Mexican family members were likely to view the
problem as one of “nerves,” an illness label that is less stigmatizing than
schizophrenia and which preserves more hope of future cure. Similarly,
to view Alzheimer’s as the result of emotional trauma likely to adversely
affect anyone is to render the disease and its impact on the aging mind
and body more understandable and ultimately less stigmatizing. Latino
caregivers in our study did this by placing ideas about the nature and cause
of Alzheimer’s disease in larger stories about the family and about threats
to it due to loss, migration, death and conflict.

CONCLUSION

Several types of stories were identified in this analysis of interviews

with ethnically diverse families caring for someone who has received a
diagnosis of Alzheimer’s disease or a related disorder. Each different story
type configures moral concerns in a particular way, thereby revealing much
about how they experience dementing illness, about what is “at stake”
for them in caring for relatives who are often quite disabled.14 Stories
about “deteriorating brain cells” and “loss of identity” direct the moral
focus to the realm of individual biology, to the ravages of a pernicious
and mysterious disease entity. The remaining two story types shift the
focus to the social realm, where they serve as moral commentary on the
family. For a subset of Chinese families, stories about “old age illness”
normalized Alzheimer’s disease, emphasized management of disabilities
and brought into focus how family members had or hadn’t lived up to their
filial obligations. Finally, a subset of Latino caregivers told stories that
placed the onset and course of dementing illness in the context of stories
about the family as it is affected by migration, separations, and death. The
 CONSTRUCTING ALZHEIMER’S 469

elder’s memory loss is viewed in psychosocial terms as an understandable

response to these emotional traumas.
Ethnic identity was linked to familiarity with and use of particular
notions of health and illness, with particular social histories, such as family
migration, and with the use of local networks of health care providers
and institutions. In this way, ethnicity can be regarded as a set of cultural
resources and shared experiences caregivers draw upon to interpret and
construct narratives of Alzheimer’s disease.15 Yet other meanings cross
ethnic boundaries. For example, the equation of Alzheimer’s and “loss
of self” is part of a popular discourse on the illness in American society
that was found among caregivers in three of the four ethnic groups. A
question raised by this analysis is whether caregivers, when confronted
with an aging and disabled family member, may draw in part on cultural
knowledge that is narratively organized. Culture may provide not only
abstract notions about the nature and cause of illness, but also prototypical
stories to help make sense of the forgetfulness, confusion, and disability
that sometimes accompanies old age.16
In each type of story, biomedical and folk understandings of
Alzheimer’s disease are combined. The use of more open-ended interviews
allowed this mosaic of interpretations of Alzheimer’s disease to emerge in
ways that would be much more difficult to capture with more structured
approaches. The stories also point to distinctive “cultures” of health care as
quite important in shaping caregivers’ interpretations of dementia-related
changes. All of these narratives include descriptions of encounters with
practitioners of biomedicine. Yet the biomedical model is communicated
to families in quite diverse ways and in widely divergent settings, from
the private offices of primary care physicians practicing in Chinatown
to the offices of neurologists at university hospital-based memory loss
clinics. In these local settings, biomedical knowledge, divergent physi-
cian approaches to disclosure of diagnosis and styles of communication
and family perceptions come together to configure illness meanings and
experience in distinctive ways. From this perspective, we suggest, these
data highlight the need to move beyond “ethnic” differences to examine
in a detailed, ethnographically-informed way how experiences within the
local cultures of families and institutions mediate the re-interpretation of
biomedical discourse, its combination with popular knowledge, and its
adaptation 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 over
time as caregivers share information with their social network of family,
friends, health care providers, and support groups. A multifaceted and
470 W. LADSON HINTON AND SUE LEVKOFF

longitudinal view of the social processes through which illness meanings

and 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-Jo

Delvecchio Good, and Byron Good for their helpful comments on earlier
drafts of this manuscript. We thank the research team, including Zibin
Guo, Madelyn Hicks, Jennifer Hillygus, Mabel Lam, Ana Ortiz, and Janie
Simmons for assistance with data collection and for their collaboration on
this 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 and
Linda King for assistance in conducting these interviews.

NOTES

1. We have used pseudonyms and changed certain demographic information in order to

protect the confidentiality of study participants.
2. See the Introduction to this issue by Hinton et al. for a more complete description of
the overall project.
3. Here and throughout the rest of this paper, we use the term Alzheimer’s to refer to
Alzheimer’s disease and related dementias, a group of conditions that share a set of
features, including cognitive impairment and disability.
4. While there is an enormous literature in cultural anthropology and sociology that takes
as its focus the diversity within cultures, or societies, our work has been influenced
by the recent work of Barth (1994) and Hannerz (1994). In work on Alzheimer’s
disease, see Cohen’s ethnography for attention to the influence of class, gender on
interpretations of Alzheimer’s in India (1998).
5. This is not simply a phenomenon that exists in “high-income” societies such as
the United States, but that is prevalent throughout the world, providing yet another
example of the global reach of biomedical categories and practices.
6. In the gerontological literature, this is explained as a “loss” that occurs later in
the 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 are
diagnosed 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 our
sample 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 machine
metaphor; 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) for
more ethnographic data on the perspectives of clinicians in Chinatown.
 CONSTRUCTING ALZHEIMER’S 471

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 the
progression of cognitive impairment in a subset of patients. These interviews were
conducted in 1993–1994, just as empirical data were emerging to support their use in
primary care settings.
11. This may be due, in part, to the lack of Spanish-speaking professional staff in these
clinics.
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 understand
what 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 ethnicity
that 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 narrative
theory and illness representations (Mattingly and Garro 1994).

REFERENCES
Advisory Panel on Alzheimer’s Disease
1992 Fourth Report on Advisory Panel on Alzheimer’s Disease, 1992. NIH Pub. No.
93-3520. Washington, DC: Supt. Of Docs., U.S. Govt. Print. Off.
Altman, L.K.
1997 A President Fades Into a World Apart. New York Times, October 5.
Barker, J.
1997 Between Humans and Ghosts: The Decrepit Elderly in a Polynesian Society. In J.
Sokolovsky (ed.) The Cultural Context of Aging. Westport, Connecticut: Bergin
& Garvey.
Barth, F.
1994 Eduring and Emerging Issues in the Analysis of Ethnicity. In H. Vermeulen and C.
Grovers (eds.) The Anthropology of Ethnicity. Amsterdam: Het Spinhius.
Braun. K.L, J.C. Takamura, S.M. Forman, P.A. Saski, L. Meninger
1995 Developing and Testing Outreach Materials on Alzheimer’s Disease for Asian and
Pacific Islander Americans. Gerontologist 35: 122–126.
Bruner, J.
1990 Acts of Meaning. Cambridge, Mass: Harvard University Press.
Cohen, L.
1995 Toward an Anthropology of Senility: Anger, Weakness, and Alzheimer’s in
Banaras, India. Medical Anthropological Quarterly 9(3): 314–334.
1998 No Aging in India. Berkeley and Los Angeles: University of California Press.
Early, E.A.
1982 The Logic of Well-Being: Therapeutic Narratives in Cairo, Egypt. Social Science
and Medicine 16: 1491–1497.
472 W. LADSON HINTON AND SUE LEVKOFF

Elliott, K.S., M. Di Minno, D. Lam, A.M. Tu

1996 Working with Chinese Families in the Context of Dementia. In G. Yeo and
D. Gallagher-Thompson (eds.) Ethnicity and the Dementias. Washington D.C.:
Taylor and Francis.
Estes, C., E.A. Binney
1991 The Biomedicalization of Aging: Dangers and Dilemmas. In M. Minkler and C.L.
Estes (eds.) Critical Perspectives on Aging: The Political and Moral Economy of
Growing Old. Amityville, New York: Baywood Publishing Company, Inc.
Farmer, P., B.J. Good
1991 Illness Representations in Medical Anthropology: A Critical Review and a Case
Study of the Representation of AIDS in Haiti. In J.A. Skelton and RT. Croyle (eds.)
Mental Representation in Health and Illness. New York: Springer-Verlag.
Fox, P.
1989 From Senility to Alzheimer’s Disease: The Rise of the Alzheimer’s Disease
Movement. The Milbank Quarterly 67: 58–102.
Frank, A.W.
1995 The Wounded Storyteller. Chicago: The University of Chicago Press.
Gaines, A.
1988 Alzheimer’s Disease in the Contest of Black (Southern) Culture. Health Matrix 4:
33–38.
Garro, L.C.
1992 Chronic Illness and the Construction of Narratives. In Mary-Jo Delvecchio Good,
Paul E. Brodwin, Byron J. Good and Arthur Kleinman (eds.) Pain as Human
Experience. Berkeley: University of California Press, pp. 100–137.
Good, B.J.
1977 The Heart of What’s the Matter; The Semantics of Illness in Iran. Culture,
Medicine and Psychiatry 1: 25–58.
1993 Medicine, Rationality, and Experience: An Anthropological Perspective.
Cambridge: Cambridge University Press.
Good, B.J., M.J. Good
1994 In the Subjunctive Mode: Epilepsy Narratives in Turkey. Social Science and
Medicine 41: 461–473.
Good, M.J.
1995 Cultural Studies of Biomedicine: An Agenda for Research. Social Science and
Medicine 41: 461–473.
Good M.J., T. Munakata, Y. Kobayashi, C. Mattingly, B.J. Good
1994 Oncology and Narrative Time. Social Science and Medicine 38(6): 855–862.
Gubrium, J.F.
1986 Oldtimers and Alzheimer’s: The Descriptive Organization of Senility. Greenwich,
CT: JAI Press.
Hannerz, G.
1994 Cultural Complexity: Studies in the Social Organization of Meaning. New York:
Columbia University Press.
Henderson, J.N.
1990 Anthropology, Health, and Aging. In R.L. Rubinstein (ed.) Anthropology and
Aging. Dordrecht, Netherlands: Kluwer Academic Publishers.
1994 Ethnic and Racial Issues. In J.F. Gubrium and A. Sankar (eds.) Qualitative
Methods in Aging Research. New York: Sage.
 CONSTRUCTING ALZHEIMER’S 473

1996 Cultural Dynamics of Dementia in a Cuban and Puerto Rican Population in the
United States. In G. Yeo and D. Gallager-Thompson (eds.) Ethnicity and the
Dementias. Washington DC: Taylor and Francis.
Herskovits, E.
1995 Struggling over Self and Subjectivity: Debates about the “Self” and Alzheimer’s
Disease. Medical Anthropology Quarterly 9: 146–164.
Herskovits, E., L. Mitteness
1994 Transgressions and Sickness in Old Age. Journal of Aging Studies 8: 327–340.
Hicks, M., M. Lam
1999 Decision-Making within the Social Course of Dementia: Accounts by Chinese
American Caregivers, this issue, 415–452.
Hinton, W.L, K. Fox, S. Levkoff
1999 Exploring the Relationships among Aging, Ethnicity and Dementing Illness.
Culture, Medicine and Psychiatry 23(4).
Hinton, W.L., Z. Guo, S. Levkoff
Working with Culture: A Qualitative Study of Barriers to the Recruitment of
Chinese-American Family Caregivers for Dementia Research. (submitted for
publication)
Hinton, W.L. and A. Kleinman
1993 Cultural Issues and International Psychiatric Diagnosis. In J.A. Costa e Silva and
C. Nadelson (eds.) International Review of Psychiatry, Volume 1. Washington,
D.C.: American Psychiatric Association Press, pp. 111–129.
Hinton, W.L., A. Kleinman, K. Fox
1997 Cultural Issues in Primary Care Medicine. In J. Noble, H. Green, J. Heffernan,
W. Levinson and G. Modest (eds.), Primary Care Medicine CD-ROM, Mosby-
Yearbook.
Hyden, L.C.
1997 Illness and Narrative. Social Health & Illness 19: 48–69.
Holzberg, C.S.
1982 Ethnicity and Aging: Anthropological Perspectives on More Than Just the
Minority Elderly. Gerontologist 22(3): 249–257.
Ikels, C.
1989 Becoming a Human Being in Theory and in Practice: Chinese Views of Human
Development. In D. Kertzer and K.W. Schaie (eds.) Social Structure and Aging:
Comparative Perspectives on Age Structuring in Modern Societies. Hillsdale, NJ:
Erlbaum.
1997 Long-Term Care and Disabled Elderly in Urban China. In J. Sokolovsky (ed.) The
Cultural Context of Aging. Westport, Connecticut: Bergin & Garvey.
Jenkins, J.H.
1988 Conceptions of Schizophrenia as a Problem of Nerves: A Cross-Cultural Compar-
ison of Mexican-Americans and Anglo-Americans. Social Science and Medicine
12: 1233–1243.
Kleinman, A.
1988 Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic
Books.
Kleinman A., J. Kleinman
1991 Suffering and Its Professional Transformations: Toward an Ethnography of Exper-
ience. Culture, Medicine and Psychiatry 15(3): 275–301.
474 W. LADSON HINTON AND SUE LEVKOFF

Kramer, B.J., J.C. Barker

1994 Ethnicity in the Elderly. J Cross-Cultural Gerontology 9: 403–417.
Levkoff S., I. MacArthur, J. Bucknall
1995 Elderly Mental Health in the Developing World. Social Science and Medicine 41:
983–1003.
Levkoff, S., I. MacArthur, J. Bucknall
1995 Elderly Mental Health in the Developing World. Social Science and Medicine 41:
983–1003.
Lyman, K.A.
1989 Bring the Social Back In: A Critique of the Biomedicalization of Dementia.
Gerontologist, 597–605.
Mace, N.L., P.V. Rabins
1981 The 36-Hour Day. Baltimore and London: The Johns Hopkins University Press.
Mathews, H.F., D.R. Lannin, J.P. Mitchell
1994 Coming to Terms with Advanced Breast Cancer: Black Women’s Narratives from
Eastern North Carolina. Social Science and Medicine 38: 789–800.
Mattingly, C.
1994 The Concept of Therapeutic “Emplotment.” Social Science and Medicine 38: 811–
822.
Mattingly, C., L.C. Garro
1994 Introduction Social Science and Medicine 38: 771–774.
Ortiz, A., J. Simmons, W.L. Hinton
1999 Locations of Remorse and Homelands of Resilience: Notes on Grief and Sense
of Place of Latino and Irish American Caregivers of Demented Elders. Culture,
Medicine and Psychiatry: 23(4).
Politt, P.A.
1996 Dementia in Old Age: An Anthropological Perspective. Psychological Medicine
26: 1061–1074.
1997 The Problem of Dementia in Australian Aboriginal and Torres Strait Ander
Communities: An Overview. International Journal of Geriatric Psychiatry 12:
155–163.
Price, L.
1987 Ecuadorian Illness Stories: Cultural Knowledge in Natural Discourse. In D.
Holland and N. Quinn (eds.) Cultural Models in Language and Thought
Cambridge: Cambridge University Press.
Smith, A.
1996 Cross-Cultural Research on Alzheimer’s Disease: A Critical Review. Transcultural
Psychiatric Review 33: 247–275.
Sweeting, H., M. Gilhooly
1997 Dementia and the Phenomenon of Social Death. Social Health & Illness 19: 93–
117.
 CONSTRUCTING ALZHEIMER’S 475

Valle, R.
1989 Cultural and Ethnic Issues in Alzheimer’s Disease Family Research. In E. Light
and B.D. Lebowitz (eds.) Alzheimer’s Disease Treatment and Family Stress:
Directions for Research. DHHS Pub No (ADM) 89-1569. Washington D.C. Supt
of Docs U.S. Govt Printing Office, pp. 122–154.

Department of Psychiatry
UC Davis Medical Center
Sacramento, CA
USA