Full text of DOI:10.1093/geront/41.2.210

The Gerontologist
Vol. 41, No. 2, 210–219
Copyright 2001 by The Gerontological Society of America
Toward the Conceptualization and
Measurement of Caregiver Burden Among
Pueblo Indian Family Caregivers
Robert John, PhD,1 Catherine Hagan Hennessy, DrPH, MA,2
Timothy B. Dyeson, PhD,3 and Mario D. Garrett, PhD4
Purpose: The purpose of this study was to evaluate burden
experienced by a group of American Indian primary family
caregivers and to determine if caregiver burden is a multi-
dimensional concept. Design and Methods: This analysis
is based on the results of a survey questionnaire adminis-
tered to 169 Pueblo primary family caregivers in New
Mexico. Results: Analysis of the items composing the
Caregiver Burden scale indicated that caregiver burden is
multidimensional and consists of several types of burden.
Caregiver burden, as identified in this sample, is composed
of four dimensions: role conflict, negative feelings, lack of
caregiver efficacy, and guilt. Investigations of caregiver
burden should consider the multidimensionality of this ex-
perience and evaluate burden accordingly. Implications:
By identifying the specific type of burden that a caregiver
experiences, interventions can be targeted more accurately
to support family caregiving.
vider of long-term care services (American Associa-
tion of Retired Persons & Travelers Foundation,
1988; National Alliance for Caregiving & American
Association of Retired Persons, 1997; Stone, Caffer-
ata, & Sangl, 1987; Wood & Wan, 1993). Whether
or not one endorses the notion that minority families
provide more support to their elders than non-His-
panic White families, there is a general consensus
that minority families are changing in ways that re-
duce the ability of the family to provide long-term
care services (Antonucci & Cantor, 1991; Burton &
Dilworth-Anderson, 1991; John, 1999).
Moreover, as evidenced by lower institutionaliza-
tion rates (Himes, Hogan, & Eggebeen, 1996; John,
1995) and lower proportions of minority elders liv-
ing alone (Angel & Hogan, 1991), minority families
are even more salient as the providers of long-term
care services than among non-Hispanic White elders.
Because families are the principal providers of long-
term care services to minority elders, it is vital to un-
derstand the context of family caregiving, especially
the problems that threaten the caregiving system.
Clearly, the persons who actually provide most of
the care to impaired elders are the essential element
in the family caregiving system, and whatever com-
promises their ability to provide care places the sys-
tem in jeopardy. This fundamental insight has re-
sulted in the development of one of the most active
areas of gerontological research for nearly two de-
cades.
Despite the inordinate amount of attention given
to family caregiving issues during this time, knowl-
edge of caregiving issues among American Indians—
whose population age 65 and older increased 52%
between 1980 and 1990 (Barresi & Stull, 1993)—is
far less developed than similar research on other
groups. In fact, only a handful of studies have inves-
tigated any caregiving issues in this population.
Moreover, little is known about how the problems
and stresses of caregiving are handled in light of
American Indian cultural norms and expectations for
elder care. Although the extended family structure
and traditional values of American Indian tribes sup-
port and prescribe elder care (Red Horse, 1980),
Key Words: Family caregiving, American Indians,
Caregiver burden
Despite the growth of aging programs in the
United States, family support networks continue to
provide most long-term care services to functionally
impaired elders. In fact, it has been recognized for
some time that as an elder’s impairment level in-
creases, the value of services provided by the infor-
mal support network also increases (General Ac-
counting Office, 1977). Subsequent research has
further established the family as the primary pro-
Primary support for this research was provided by National Institute
on Aging Grant No. R01-AG11294. Additional support for this research
was provided by the Louisiana Board of Regents Support Fund through
the University of Louisiana at Monroe. We would like to acknowledge the
generous support and assistance provided by the New Mexico Title VI
programs, without which this project would not have been possible.
Address correspondence to Robert John, Department of Health Pro-
motion Sciences, University of Oklahoma, 801 N.E. 13th Street, Room
369-A, Oklahoma City, OK 73190. E-mail: robert-john@ouhsc.edu
1Gerontology Program, University of Louisiana at Monroe.
2Health Care and Aging Studies Branch, Centers for Disease Control
and Prevention, Atlanta, GA.
3Louisiana State University, Baton Rouge.
4Data Analysis Service, Albuquerque, NM.
210
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family caregivers—particularly those in reservation
settings—can and do experience various difficulties
associated with caregiving.
son, 1999) interpreted these burdens in a culturally
distinct manner. For example, some family helpers
viewed burden as being associated with those diffi-
culties that negatively affected their ability to carry
out their culturally endorsed role as care providers.
Moreover, in contrast to findings reported for non-
Hispanic White caregivers (e.g., Steinmetz, 1988),
these American Indian caregivers emphasized the ef-
fects of caregiving strain on the group (i.e., family
and tribe) rather than those that infringed on a care-
giver’s personal or individual needs (such as privacy
or time for self).
In contrast to Strong’s (1984) findings, Hennessy
and John (1995) found that family caregivers were
active in their attempt to enlist the support of others
within both informal and formal support networks
to create an effective caregiving routine (i.e., gaining
mastery of the situation) and to seek information on
potential resources to assist them with caregiving re-
sponsibilities. They found that caregivers in these
five tribes accepted the caregiving situation, but not
passively. Indeed, these caregivers also expressed
some degree of resentment toward service providers
and noncontributing family members for the lack of
assistance with elder care. Overall, a salient finding
was the pervasive sense of cultural obligation for care-
giving that was expressed by these primary family
caregivers. Hennessy and John (1996) concluded that
this cultural norm underlies caregiving activities for
this group of American Indians, with important pol-
icy and programming implications for the design and
delivery of long-term care services.
American Indian Caregiving Research
To date, most of the published research on Ameri-
can Indian family caregiving has been based on quali-
tative investigations. In a single, small-scale qualitative
study that compared the perceptions of caregiving bur-
den and coping among 10 Northwest Indian and 10
White caregivers matched on sex, income, and rural
residence, Strong (1984) suggested that the experience
of caretaking responsibilities and stresses differed be-
tween the two groups. In comparison to White caregiv-
ers, Strong found that the responses of the Indian care-
givers suggested that they perceived themselves as
having less control over the caregiving situation and
that they also placed more emphasis on the positive di-
mensions of managing the needs of a dependent elder.
Indian caregivers used a coping strategy that Strong
characterized as “passive forbearance,” that is, empha-
sizing acceptance of and adaptation to the caregiving
situation rather than attempting to actively control it.
A second research project conducted on caregiving
in American Indian families (Hobus, 1990) is a sin-
gle case study that described the intermediary role
played by a nurse in helping a family prepare to pro-
vide care to a frail Lakota elder during her periodic
home visits away from an off-reservation Anglo
nursing home. Hobus identified seven major prob-
lems that emerged during the family assessment pro-
cess, including knowledge deficits in how to provide
care to the elder, lack of knowledge about how to
obtain outside help, lack of familiarity with the con-
sumer rights of nursing home patients, guilt related
to not providing care to the elder at home, fear about
the eventual death of the elder in an alien surround-
ing, resentment toward previous health care provid-
ers, and concern for the health of the primary family
caregiver during the elder’s home visits. Because the
family had provided in-home care to the elder before
her placement in the nursing home, some of these
problems were based on the experience of full-time,
in-home caregiving, although these issues were not
the explicit focus of Hobus’s research.
These qualitative findings suggest that American
Indian caregivers endorse certain burden concepts dif-
ferently than their non-Hispanic White or other non-
Indian counterparts. According to Biegel, Sales, and
Schulz (1991, p. 51), because “the concept of burden
lies at the heart of caregiving, it is essential that we
achieve some clarity on the notion of burden at both
the conceptual and measurement levels.”
Caregiver Burden Research
Despite the fact that a widespread consensus has
developed that the concept of caregiver burden is a
central issue in any theoretical conceptualization of
the caregiving process, a limited amount of previous
research has investigated the multidimensionality of
the concept of caregiver burden (Braithwaite, 1996;
Greene, Smith, Gardiner, & Timbury, 1982; Law-
ton, Kleban, Moss, Rovine, & Glicksman, 1989;
Miller, McFall, & Montgomery, 1991; Montgom-
ery, Gonyea, & Hooyman, 1985; Montgomery,
Stull, & Borgatta, 1985; Zarit, 1992; Zarit & Zarit,
1990). Although researchers differ in the label they
attach to this phenomenon (i.e., burden, strain, stress,
or appraisal), everyone recognizes it as an important
influence on caregiving outcomes, and it is important
that the complexity of this concept be better under-
stood. Without engaging in the dispute about which
of these terms or labels best represents the phenome-
non, we wish to determine if burden (the negative
A broader qualitative study of the situation and
experiences of family caregivers among five tribes
(Hennessy & John, 1995, 1996; Hennessy, John, &
Anderson, 1999) identified a number of sources of
burden among these caregivers. These Indian care-
givers reported commonly experienced stresses such
as competing responsibilities between caregiving and
work or other family duties and perceived negative
effects on family relationships and on personal
health and well-being. These burdens were often pro-
duced or exacerbated by conditions encountered on
these reservations, such as lack of indoor plumbing,
the need to chop and haul wood for cooking and
heating, or lack of availability of or access to com-
prehensive services.
To some degree, the caregivers in this study (Hen-
nessy & John, 1995, 1996; Hennessy, John, & Ander-
Vol. 41, No. 2, 2001
211

subjective appraisal of the caregiving situation) is
multidimensional among American Indian caregivers
and identify the types of burden American Indian care-
givers experience.
which caregivers perceive their emotional or physical
health, social life, and financial status to be nega-
tively affected as a result of their caregiving role and
duties.
As several researchers (Hernandez, 1991; Lubor-
sky & Sankar, 1993; MaloneBeach & Zarit, 1991)
have recognized, caregiving has different meanings
and implications for different groups—including eth-
nic groups—and the lack of attention to group differ-
ences may obscure important findings about the ex-
perience of caregiving. In contrast to those who seek
some universally valid conceptualization of what con-
stitutes caregiver burden, Lawton and associates (1989)
made the valid point that “some cross-sample varia-
tion in structure is probably the norm” (p. P70). In-
deed, Lawton and colleagues ended their article by
calling for additional measurement development and
further examination of the generalizability of find-
ings “across different subgroups of caregivers” (p.
P71). To date, few studies have investigated the mul-
tidimensionality of caregiver burden, and no quantita-
tive studies have investigated burden among Ameri-
can Indian caregivers. Therefore, the purpose of this
study was to investigate caregiver burden among a
sample of American Indian primary family caregivers
and to identify important dimensions or types of per-
ceived burden for this group.
The BI was selected for use because of its compar-
atively concrete phrasing and because of the greater
face validity of items for this population than other
candidate scales (Hennessy & John, 1995). All 22
items in this scale were measured at the ordinal level
and were of the Likert scale format. Most of the ad-
aptations made to the scale involved changing each
question to elicit a temporal characterization of the
experience by prefacing each question with the phrase
“how often do you.” Response categories to each
item were never, rarely, sometimes, quite frequently,
and nearly always. The other systematic change was
to substitute elder for your relative so the interviewer
could mention each care recipient by name or rela-
tionship (i.e., your mother).
Other than these format changes that did not
change the original substantive issue of each ques-
tion, three questions were modified to make them
more appropriate to a broader population of caregiv-
ers. The original BI question that asked caregivers if
they were stressed between caring for their relative
and meeting other responsibilities to family or work
was changed to pulled between these responsibilities.
The question that asked whether caregivers feel like
they have lost control of their lives “since your rela-
tive’s illness” was changed to “since you’ve become a
caregiver.” The final change involved a wording
change to the global measure of caregiver burden. In
the original BI, this question was the only one that
had a different response set (not at all, a little, mod-
erately, quite a bit, extremely). We transformed the
question to retain its meaning but elicit a response
similar to the other items. Our wording, “Overall,
how often do you feel burdened in caring for [el-
der],” made this question consistent with the other
items in the scale. The exact wording of each ques-
tion can be found in Table 1.
Methods
This study was based on the results of a face-to-
face survey of 169 Pueblo primary family caregivers.
The data on the situation of American Indian pri-
mary family caregivers were collected between 1995
and 1997 as part of a National Institute on Aging–
funded project (R01-AG11294; Robert John, princi-
pal investigator) in collaboration with American In-
dian aging programs in New Mexico. The broad
purpose of the study was to investigate the family
caregiving situation, including the identity of the care-
giver, the tasks performed, the level and types of el-
der impairment, and a range of additional caregiving
issues. A central concern of the research was to eval-
uate the level of perceived burden and identify the
types of burden experienced by Pueblo caregivers.
We hypothesized that, if the many critics of global
measures of caregiver burden are correct (George,
1994; George & Gwyther, 1986; McKinlay, Craw-
ford, & Tennstedt, 1995; Poulshock & Deimling,
1984; Schultz, 1990; Stull, Kosloski, & Kercher,
1994; Vitaliano, Young, & Russo, 1991), then care-
giver burden should be multidimensional and the
structure of caregiver burden should suggest how
American Indian cultural values influence negative
caregiving appraisals (Russo, Vitaliano, & Young,
1991).
Additional Measures
The survey instrument assessed ability to perform
activities of daily living (ADLs; five items) and in-
strumental activities of daily living (IADLs; eight
items). Each item was measured on a 3-point scale
(no help needed, some help needed, cannot perform
the activity). The ADL and IADL scales were derived
from Katz, Ford, Moskowitz, Jackson, and Jaffee
(1963) and Lawton and Brody (1969), respectively,
and had been used in the Michigan Caregiver Study
(see Kosloski, Young, & Montgomery, 1999, for a
description of the measures). One IADL item was
changed from “buying/getting food/clothes” to “shop-
ping for food or other essentials.” To better reflect
the caregiving context, another important IADL was
added: dealing with government agencies and other
organizations (e.g., filling out forms, arranging for
services). The Cognitive Status scale (seven items)
was based on a scale developed by Pearlin, Mullan,
Semple, and Skaff (1990). On the basis of discussions
The Burden Interview
The Caregiver Burden scale used in this study was
based on an instrument adapted from the Burden In-
terview (BI) developed by Zarit, Reever, and Bach-
Peterson (1980). The BI measures the extent to
212
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Table 1. Frequency Distribution of Caregivers Who Report Quite Frequently or Nearly Always to Caregiver Burden Measures
Scale Item
Frequency
110
%
How often do you feel that [elder] is dependent on you?
65.1
How often do you feel that [elder] seems to expect you to take care of him/her as if you were the only one he/she
could depend on?
How often do you feel afraid of what the future holds for [elder]?
How often do you feel pulled between caring for [elder] and trying to meet other responsibilities for your family or work?
How often do you feel strained when you are around [elder]?
How often do you feel that because of the time you spend with [elder] that you don’t have enough time for yourself?
How often do you feel that you don’t have enough money to care for [elder] in addition to the rest of your expenses?
How often do you feel that [elder] asks for more help than he/she needs?
How often do you feel you should be doing more for [elder]?
How often do you feel that [elder] currently affects your relationship with other family members or friends in a negative way?
How often do you feel uncertain about what to do about [elder]?
How often do you feel you could do a better job in caring for [elder]?
Overall, how often do you feel burdened in caring for [elder]?
How often do you feel that you do not have as much privacy as you would like because you are caring for [elder]?
How often do you feel that your social life has suffered because you are caring for [elder]?
How often do you feel that you will be unable to take care of [elder] much longer?
How often do you feel angry when you are around [elder]?
How often do you feel your health has suffered because of your involvement with [elder]?
How often do you feel embarrassed over [elder’s] behavior?
95
66
54
48
48
45
45
30
26
26
25
23
22
21
20
13
11
9
56.5
38.8
31.8
28.4
28.2
26.6
26.5
18.1
15.3
15.5
14.9
13.6
13.0
12.5
12.0
7.6
6.5
5.3
How often do you wish you could just leave the care of [elder] to someone else?
How often do you feel you have lost control of your life since you’ve become a caregiver?
How often do you feel uncomfortable about having friends over because of [elder]?
9
7
6
5.4
4.2
3.6
with Pueblo service providers, we modified the re-
sponse set to measure each item on a 3-point scale
(never a problem, occasionally a problem, always a
problem). To make the scale more appropriate for
Pueblo caregivers, we dropped one item (remembers
home address) and modified one item from remem-
bering “the day of the week” to remembering “what
season it is.” Both of these modifications made the
item more appropriate to the Pueblo living environ-
ment (no house numbers or street addresses) and a
temporal orientation more in tune with nature.
tions of historical proportion), the situation of each
elder in the community is known, especially to ser-
vice providers charged with their care. Because of
this and our attempt to identify and interview all care-
givers who met the selection criteria, we are confi-
dent in the representativeness of the sample.
The primary caregiver was interviewed in person
by an indigenous service provider who was trained by
us in administration of the instrument. Interviews
took place in the caregiver’s home or another mutu-
ally acceptable location where respondent privacy
could be assured. The interviewer read each of the
survey questions to the respondent because this more
conversational mode of conducting the survey is more
culturally appropriate than self-administration by the
respondent and because, among elderly caregivers in
particular, literacy in English might be limited.
The Sample
The sample of individuals who participated in this
study was composed of 169 primary caregivers who
cared for functionally impaired family members. Se-
lection criteria were based on care recipient charac-
teristics, including being 55 years of age or older and
requiring help with at least one physical ADL, or
with at least two IADLs. In addition to the threshold
of care, the Title VI program directors were in-
structed to interview the person who provided the
most care to the elder.
Participants were recruited by staff from local
American Indian senior service (Title VI) programs
who were familiar with families caring for an im-
paired relative in their community. Although our
sample was purposely selected, our goal was to sur-
vey the universe of primary family caregivers who
were dealing with situations that met the selection
criteria. Because of the nature of relatively small
American Indian communities (including tribal bu-
reaucratic procedures such as the maintenance of a
tribal roll, annual documentation of the size of the
elderly service population for purposes of federal
funding, and the deep nexus of family interconnec-
Caregiver Characteristics
The sample of primary family caregivers was 86%
female. The most frequently represented caregiver
was a daughter (54%), followed by a wife (11%),
son (6%), granddaughter (5%), husband (4%), sister
(4%), and daughter-in-law (2%). The remaining care-
givers (15%) were other family members (grandson,
niece, nephew, or son-in-law) or others (friend, live-
in partner).
The caregivers ranged in age from 16 to 90 years
with a median age of 49 years. Most of the caregivers
in the sample were married (47%), followed by a sig-
nificant portion who had never married (36%); 13%
were widowed, and 4% were divorced or separated.
Approximately three quarters (74%) of the caregiv-
ers were living with the care recipient, and a solid
majority of caregivers (57%) had responsibilities for
Vol. 41, No. 2, 2001
213

the care of one or more dependent children within
their household.
alyzing individual items for construct validity. Other
techniques used in the factor analysis were listwise
deletion of missing values and oblique rotation of the
factor solution. The criterion for acceptance of fac-
tors was set at a minimum eigenvalue of 1.0. Items
with a communality and a factor loading of 0.40 or
more were retained. Reliability of the factors, or sub-
scales, was evaluated by using Cronbach’s alpha.
Care Recipient Characteristics
The median age of the care recipients was 81 years
(ranging from 55 to 103 years old), and 66% were fe-
male. Half of the caregivers (50%) said that the elder
was very dependent on others for help with daily
tasks, and another 34% said that the elder was some-
what dependent. The remainder of the elders were not
very dependent (8%) or not dependent at all (9%).
Caregiver reports of the elder’s functional and
cognitive impairments and problem behaviors re-
vealed that the typical care recipient was highly im-
paired. On the basis of the caregiver’s assessment,
most elders had substantial problems with IADLs
such as using the telephone, using transportation,
preparing meals, taking medicine, doing housework,
managing money, or dealing with government agen-
cies. Approximately two thirds of the care recipients
needed some assistance with all of these activities.
Although fewer elders had difficulties with physical
ADLs (including bathing, using the toilet, dressing,
transferring from bed and chairs, or eating), fully one
quarter (25%) of these care recipients needed some
assistance with all five ADL tasks.
Caregivers claimed that cognitive impairment or
difficult behaviors were also a problem. When asked
how frequently the elder exhibited seven specific cog-
nitive deficits (remember recent events, the season,
words, understand simple instructions, find way around
the house, speak sentences, or recognize people), more
than one quarter (28%) of these care recipients dis-
played five or more of these problems at least occa-
sionally. To make matters worse, approximately 9 in
10 (92%) of the care recipients had exhibited one or
more of the following problem behaviors during the
past month: wandering or getting lost, being con-
stantly restless, being nervous or agitated, engaging
in potentially dangerous activities, or being inconti-
nent. In fact, incontinence was a problem either oc-
casionally (40%) or frequently (13%) for more than
half of the care recipients. Because of these high lev-
els of impairment, close to one half (48%) of the care-
givers reported that the care recipient could not be
left alone for more than an hour.
Findings
Overall, the data indicate that Pueblo caregivers
reported substantial levels of perceived burden. Ta-
ble 1 indicates the percentage of respondents who
said they quite frequently or nearly always felt a par-
ticular type of burden. Results of a reliability analysis
of the entire caregiver burden scale yielded an alpha
of .91, a finding consistent with results reported by
others (Gallagher et al., 1985; Zarit & Zarit, 1990).
Exploratory Factor Analysis
Table 2 presents the zero-order correlations, means,
and standard deviations for the items retained in the
factor analysis. In general, the zero-order correla-
tions were consistently high among items contained
within the same factor and lower among items that
were found to load in different factors. The means
and standard deviations were reasonable given the
caregiving context and content of the items. Al-
though not included in Table 2, the skew and kurto-
sis values showed that the items were normally dis-
tributed.
Factor analysis indicated that caregiver burden
among Pueblo primary family caregivers is multidi-
mensional and consists of several components or
types of burden. Results of the exploratory factor
analysis indicated four factors or latent variables that
were composed of items that were highly correlated
with each other but were not highly correlated with
other factors, supporting the multidimensionality of
caregiver burden among this group of American In-
dians. Evidence of the construct validity and reliabil-
ity of the subscales was provided by the high factor
loadings, communalities, and by the Cronbach’s al-
pha coefficients. Table 3 identifies each subscale and
its constituent burden items.
Factor 1 was composed of eight scale items: How
often do you feel (a) that because of the time you
spend with [elder] that you do not have enough time
for yourself, (b) that [elder] is dependent on you, (c)
pulled between caring for [elder] and trying to meet
other responsibilities for your family or work, (d)
that [elder] seems to expect you to take care of him/
her as if you were the only one he/she could depend
on, (e) that you do not have as much privacy as you
would like because you are caring for [elder], (f)
strained when you are around [elder], (g) your health
has suffered because of your involvement with [el-
der], and (h) that your social life has suffered because
you are caring for [elder]? These items measure the
degree to which caregiving interferes with other roles
or interpersonal relationships or stems from diver-
Factor Analytic Techniques
To examine the underlying dimensions of care-
giver burden among this American Indian sample, we
analyzed the data using exploratory factor analysis.
Exploratory factor analysis is a construct validation
method “aimed at assessing the validity of treating a
set of indicators as reflecting the same construct”
(Pedhazur & Schmelkin, 1991, p. 65). In other
words, this method analyzes how responses to ques-
tions group together to provide some meaning about
the relationships between them. We used principal-
axis factoring, the most widely used method of factor
extraction (Pedhazur & Schmelkin, 1991). This
method of extraction was chosen for its utility in an-
214
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Table 2. Mean, Standard Deviation, and Correlations Among Caregiver Burden Scale Items
Item
M
SD
1
2
3
4
5
6
7
8
9
10 11 12 13 14 15 16 17 18
1. Not enough time for self
2. Competing responsibilities
3. Embarrassed by elder’s behavior 1.7 0.95 .21 .21
2.9 1.20
2.9 1.21 .75
—
—
—
4. Angry when around elder
5. Negatively affects other
relationships
2.0 1.01 .27 .27 .62 —
2.2 1.18 .39 .43 .49 .54
—
6. Elder dependent on respondent 3.7 1.12 .52 .42 .06 .16 .24 —
7. Feels strained around elder
8. Health has suffered
2.7 1.28 .51 .42 .30 .56 .50 .44 —
1.9 0.95 .51 .51 .39 .42 .42 .35 .67 —
9. Not as much privacy as desired 2.2 1.20 .59 .57 .28 .44 .54 .37 .56 .57 —
10. Social life has suffered
11. Uncomfortable having friends
over
12. Feels like only one elder can
depend on
2.3 1.14 .49 .47 .28 .40 .57 .31 .48 .50 .66 —
1.6 0.85 .32 .30 .62 .60 .56 .13 .38 .43 .53 .51 —
3.5 1.33 .50 .45 .09 .25 .30 .58 .35 .30 .38 .46 .23
—
13. Unable to care for elder much
longer
2.0 1.10 .40 .42 .39 .30 .39 .15 .38 .39 .35 .34 .47 .22
—
14. Lost control of life
15. Wants to leave care to someone
else
16. Uncertain what to do about
elder
1.7 0.93 .48 .48 .43 .41 .52 .16 .39 .50 .61 .60 .57 .24 .56
—
1.8 0.97 .41 .41 .43 .41 .52 .13 .42 .34 .42 .39 .47 .19 .58 .59 —
2.2 1.09 .28 .23 .35 .33 .40 .15 .28 .28 .25 .37 .40 .25 .57 .49 .54
—
17. Should do more for elder
18. Could do a better job
2.8 1.00 Ϫ.04 Ϫ.06 Ϫ.11 .06 Ϫ.04 .12 .07 .00 .12 Ϫ.05 .03 Ϫ.05 Ϫ.03 Ϫ.02 .08 Ϫ.05 —
2.6 1.03 Ϫ.04 Ϫ.05 Ϫ.07 .09 .01 .09 .06 .05 .13 .02 .04 .01 .02 .05 .03 .08 .65 —
gent role expectations, and the factor was, therefore,
identified as Role Conflict. The construct validity of
this factor was supported by the communalities rang-
ing from .409 to .719 and the factor loadings rang-
ing from .45 to .77. The alpha coefficient (.88) indi-
cates the high degree of reliability of this subscale.
Factor 2 was composed of four items: How often
do you feel (a) angry when you are around [elder],
(b) embarrassed over [elder]’s behavior, (c) uncom-
fortable about having friends over because of [elder],
and (d) that [elder] currently affects your relation-
ship with other family members or friends in a nega-
tive way? These items measured the degree of nega-
tive feelings about the caregiving situation that
caregivers acknowledged. Negative feelings toward
the elder and perceived disruption of interpersonal
Table 3. Pattern Matrix of Factor Structure, Commonalities (U2), and Reliabilities of Caregiver Burden Subscales
Subscales With Items
U2
RC
NF
CE
G
Role Conflict (RC)
Not enough time for self
.719
.481
.619
.409
.623
.556
.506
.523
.77
Ϫ.12
Ϫ.38
Ϫ.10
Ϫ.00
.29
.41
.34
.22
Ϫ.15
.28
Ϫ.02
.13
Ϫ.03
.07
Ϫ.12
.09
Ϫ.10
Ϫ.04
.12
.06
.00
Elder dependent on respondent
Competing responsibilities
Feels like only one elder can depend on
Not as much privacy as desired
Feels strained around elder
Health has suffered
.74
.67
.65
.54
.50
.47
.45
Social life has suffered
.26
.19
Ϫ.03
Negative Feelings (NF)
Angry when around elder
Embarrassed by elder’s behavior
Uncomfortable having friends over
Negatively affects other relationships
Caregiver Efficacy (CE)
.685
.581
.623
.545
.06
Ϫ.16
.00
.84
.68
.60
.47
Ϫ.07
.19
.28
.06
Ϫ.13
.02
.21
.23
Ϫ.03
Unable to care for elder much longer
Wants to leave care to someone else
Uncertain what to do about elder
Lost control of life
.585
.596
.441
.633
.04
.02
Ϫ.03
.16
Ϫ.05
.10
.04
.77
.70
.66
.61
.00
.07
.02
.01
.16
Guilt (G)
Should do more for elder
Could do better job
.761
.554
Ϫ.01
Ϫ.02
Ϫ.03
Ϫ.01
.02
.07
.87
.75
Eigenvalue
% variance explained
Reliability Coefficient (␣)
7.23
40.15
0.88
1.95
10.83
0.83
1.72
9.55
0.82
1.15
6.39
0.79
Vol. 41, No. 2, 2001
215

relationships brought about by the caregiving situa-
tion were evident in this subscale. The results for this
factor showed that the communalities ranged from
.545 to .685, and the factor loadings ranged from .47
to .84. The reliability of this subscale was assessed (␣ ϭ
.83), indicating a high degree of internal consistency.
The third factor was composed of four items:
How often do you feel (a) that you will be unable to
take care of [elder] much longer, (b) wish you could
just leave the care of [elder] to someone else, (c) feel
uncertain about what to do about [the elder], and (d)
feel you have lost control of your life since you’ve be-
come a caregiver? The communalities for this factor
ranged from .441 to .633, and the factor loadings
ranged from .61 to .77. The alpha coefficient of .82
indicated the high degree of reliability of this sub-
scale. We labeled this type of burden Caregiver Effi-
cacy because it reflects an assessment of the care-
giver’s capability to provide care to the elder. It
indicates the degree to which the caregiver is experi-
encing serious questions about whether or for how
long they will be able to care for the elder. A high
score on this type of burden suggests that the care-
giving situation is at a critical point that may place
the elder at risk of not receiving care adequate to
meet his or her needs. This type of burden may well
be the precursor of neglect, institutionalization, or a
shift of caregiving to others.
Factor 4 was composed of two items: How often
do you feel (a) you should be doing more for [elder]
and (b) you could do a better job in caring for [el-
der]? The communalities for this factor were .761
and .554, and the factor loadings were .87 and .75.
The reliability of this index was satisfactory (␣ ϭ
.79). These items measured the perceived degree of
guilt indicated by the caregivers about the caregiving
situation. Higher scores on this index indicated feel-
ings of inadequacy by the caregivers concerning the
extent and effectiveness of their caregiving activities.
As seen in Table 4, the first three types of burden
were moderately related to each other, which was
consistent with the only other study to report such
findings (Novak & Guest, 1989). However, the
fourth factor—guilt—was not related to any of the
other types of burden.
Discussion
We tested the 22 items composing the Caregiver
Burden scale on a sample of 169 American Indian
primary family caregivers. Analysis indicated that car-
egiver burden is multidimensional and consists of
several types of burden. We believe, therefore, that in-
vestigations into the level of perceived caregiver bur-
den among American Indians should consider the
multidimensionality of this experience and evaluate
burden accordingly.
Perceived caregiver burden is composed of four di-
mensions, or types, of burden and four separate un-
scaled items: (a) role conflict, (b) negative feelings,
(c) caregiver efficacy, and (d) guilt and the unscaled
items of feeling that elder asks for more help than he/
she needs, afraid of what the future holds for the el-
der, that they do not have enough money to care for
the elder in addition to the rest of their expenses, and
overall feeling burdened in caring for the elder.
Role Conflict
The type of burden we labeled role conflict is clas-
sic caregiver burden (containing elements that most,
if not all, caregivers experience). It signifies the multi-
ple impacts of caregiving on the life of the caregiver
from personal impacts (time for self, lack of privacy,
health has suffered) and disruption of other roles
(pulled between elder and other responsibilities, so-
cial life has suffered) to features of the changing rela-
tionship with the care recipient (elder dependent, only
one elder can depend on, strained around elder).
Negative Feelings
The second factor represents the caregiver’s nega-
tive feelings toward the care recipient. This factor
closely resembles one of three factors reported by
Greene and colleagues (1982) and one of five factors
identified by Novak and Guest (1989). Although
Greene and colleagues used a different instrument on
a small sample (N ϭ 38) among caregivers of de-
mented elders, three of the four items they identified
(feel embarrassed, prevented from having visitors,
gets cross and angry) are quite similar to three of the
items in our factor. Novak and Guest also used a dif-
ferent instrument on a sample of 107 caregivers of
cognitively impaired elders, half of whom resided in
an institution. They also found a five-item factor that
contained three variables (feel embarrassed, uncom-
fortable having friends over, angry about interac-
tions with care receiver) that are similar to ones iden-
tified in our analysis. Novak and Guest labeled this
factor Emotional Burden but described it as negative
feelings that they attributed to behavioral problems
that often accompany cognitive impairment.
Four burden interview items were excluded from
the factor solution: How often do you feel (a) that
[elder] asks for more help than he/she needs, (b)
afraid of what the future holds for [elder], (c) that
you don’t have enough money to care for [elder] in
addition to the rest of your expenses, and (d) overall,
how often do you feel burdened in caring for [elder]?
Table 4. Correlations Between Types of Burden
Our findings suggest that negative feelings are a
type of burden American Indian caregivers also expe-
rience. Although our previous research (Hennessy &
John, 1995) found some degree of denial about nega-
tive feelings and emotions during focus group discus-
sions, at the time we speculated that a group dis-
Factor
1
2
3
4
1. Role Conflict
2. Negative Feelings
3. Caregiver Efficacy
4. Guilt
.36
.42
.05
—
.56
.03
—
Ϫ.04
—
216
The Gerontologist

cussion may not be conducive to an admission of
negative sentiments because it would be a public ac-
knowledgement of a norm violation. There can be lit-
tle doubt that feeling anger, embarrassment, social
discomfort, and social limitations are inconsistent
with how Indian caregivers are supposed to feel
about caregiving. Yet this constellation of negative
feelings was present among these caregivers when
they did not have to admit publicly that they had
such feelings.
Other Burden Issues
It is interesting to speculate about possible sub-
stantive reasons that four items did not scale well.
The first item, feeling that elder asks for more help
than he/she needs, was endorsed by approximately
one quarter of the caregivers. We believe that there
are several possible reasons that this appraisal was
not systematically related to any of the factors. Be-
cause of the high level of impairment and depen-
dence that was recognized by these caregivers, it is
possible that the caregivers do not consider most re-
quests for assistance made by the care recipient as
unreasonable. Alternately, it could be that most care
recipients are not very demanding regardless of the
type or level of need for assistance, a behavioral
characteristic that is quite consistent with American
Indian cultural norms. Either of these occurrences
would constrain the relationship between unreason-
able demands for assistance and a sense of role con-
flict, negative feelings, lack of efficacy, or guilt.
The second item, feeling afraid of the elder’s fu-
ture, is a feeling that was endorsed by a substantial
proportion of the caregivers (39%). This assessment
is not unreasonable in any caregiving circumstance
because a decline in the elder’s condition is expected
at some point in the future regardless of the elder’s
current condition. Moreover, as seen in the descrip-
tion of the sample, the typical elderly care recipient
was highly impaired and dependent on the caregiver.
Our previous research with Pueblo family caregivers
likewise confirmed the anxiety that these caregivers
frequently experienced given the perceived lack of
adequate information about the nature and expected
course of the elder’s medical condition and/or psy-
chological problems (Hennessy & John, 1995, 1996;
Hennessy, John, & Anderson, 1999).
Caregiver Efficacy
We labeled the third factor Caregiver Efficacy be-
cause the items in this factor cast doubt on the ability
to sustain caregiving. Unfortunately, the items that
compose this factor are quite ominous and even sug-
gest a certain amount of desperation. Feeling unable
to care much longer, wishing they could just leave
care to someone else, feeling that they have lost con-
trol of their life and are uncertain about what to do
all suggest caregiver breakdown.
Guilt
The fourth factor (could do a better job and
should be doing more) represents caregiver guilt. The
distribution of responses to these two items suggests
that guilt is the most common form of caregiver bur-
den among Pueblo caregivers. Most of the responses
to both of these items were consistent. For example,
around one fifth (22%) never or rarely felt guilty, ap-
proximately one third (36%) experienced both feel-
ings sometimes, and 22% experienced one or both
feeling more frequently. The remaining caregivers
(19%) were somewhat inconsistent about whether
they could or should do more.
From a cultural perspective, guilt is extremely im-
portant because it is independent of the other factors,
having little to do with role conflict, negative feel-
ings, or caregiver efficacy (see Tables 3 and 4). The
existence of this factor confirms one of the major
problems identified by Hobus (1990) in her study of
an Indian family that had placed an elder in a non-
Indian nursing home. Given American Indian cul-
tural values, their guilt is understandable. However,
our findings suggest that guilt is a form of caregiver
burden that exists even when performing a culturally
prescribed role.
The findings of this study suggest that Pueblo In-
dian family caregivers experience guilt more intensely
than the other three types of burden. This being the
case, service providers should initially determine
whether guilt is warranted. If the elder is not being
cared for adequately, then additional caregiving sup-
port services should be procured for the family. If the
elder is being adequately cared for, but the guilt feel-
ings of the caregiver are based on faulty perceptions,
then services should be tailored to provide education
and affirmation to the caregiver. This might be deliv-
ered in the form of counseling sessions with a medical
social worker or other health-related professional or
in a group setting such as a caregiver support group.
However, the third item—not having enough
money—needs to be interpreted more squarely within
the Pueblo cultural framework. Our previous work
(Hennessy & John, 1995) documented a number of
Pueblo cultural norms that influence the interpreta-
tion or meaning assigned to the caregiving situation.
Primary caregivers in these focus group discussions
tended to endorse family caregiving at all costs (per-
sonal as well as financial) and were less likely to view
financial problems associated with caregiving as an
important determinant of their caregiving behaviors.
Moreover, from a socioeconomic perspective, many
of these families lack financial resources and experi-
ence financial difficulties on a continuing basis, so
that the financial difficulties associated with caregiv-
ing are not as salient as among Anglo families.
Among many Pueblo families, the financial difficul-
ties associated with caring for an elder are simply
part of a broader mix of financial pressures and con-
cerns. In addition, one aspect of the cultural ethos re-
garding older tribal members expressed in the focus
groups (Hennessy & John, 1995) may have relevance
to the lack of emphasis on the monetary costs of el-
der care. This is the view of elders as repositories of
cultural knowledge, wisdom, and language, on whom
a monetary value cannot be placed. From this van-
Vol. 41, No. 2, 2001
217

tage point, caregiving was seen as part of the larger
fabric of nurturance and preservation of Pueblo cul-
ture, and the death of an elder was regarded as an in-
estimable loss to the Pueblo cultural legacy.
Indian respondents. Another possibility is that the
factor structure is more complex than what was re-
ported by Zarit and Zarit (1990), as other studies
that have investigated the factor structure of care-
giver burden have generally reported more than two
factors to represent the factor structure (Braithwaite,
1996; Greene et al., 1982; Kosberg, Cairl, & Keller,
1990; Lawton et al., 1989; Niederehe & Fruge,
1984; Novak & Guest, 1989; cf. Miller, McFall, &
Montgomery, 1991; Poulshock & Deimling, 1984).
Several other features of the caregiving context
may also influence the independence of financial
concerns from the identified types of burden. First,
American Indians in this study have access to a so-
cialized medical system through care provided by the
Indian Health Service. The Indian Health Service
provides acute inpatient and ambulatory patient care
through hospitals and clinics and delivers or funds
modest community-based health care services. Al-
though the services provided by the Indian Health
Service do not have a geriatric focus and existing
programs are underfunded, the services that are avail-
able do not require out-of-pocket expenses. Therefore,
one source of financial concern (mounting medical
expenses) does not exist for these caregivers.
Second, the Indian Health Service does not fund
institutional long-term care, and only one tribe in
New Mexico operates a nursing home. Therefore,
the kind of financial concern associated with nursing
home placement probably does not influence care-
giver perceptions of burden. Typically, nursing home
placement would mean placement in a non-Indian
nursing home. For most families, the financial cost of
such care would be prohibitive, but the cultural cost
(removing the elder from Pueblo culture and violat-
ing a cultural norm to provide care within the fam-
ily) would be the salient consideration.
Practical Implications
The identification of a more complex conceptual-
ization of burden has a number of practical benefits.
In the first instance, by identifying the specific type
of burden that a caregiver predominantly experi-
ences, interventions can be targeted more accurately.
For example, if a caregiver mainly experiences the
type of burden we have labeled negative feelings,
then a support group or individual counseling might
be a more appropriate intervention than, say, respite
services. Such targeted interventions open a new ave-
nue for applied research that could provide aging ser-
vice providers with a more sophisticated approach to
diagnosing need and providing services to family care-
givers and care recipients.
The secondary benefit of having a more precise
conceptualization of burden is that it would allow re-
searchers and service providers to examine how the
sense of burden changes and whether or how caregiv-
ers change in response to the experience of burden.
Additional studies are also needed to identify whether
certain types of burden are more common during par-
ticular stages of the caregiving experience or whether
a specific type of burden is associated with particular
caregiving situations (i.e., dementia care). With this
kind of information, some types of burden may be
anticipated (and considered normative), and other
types of burden may represent a pathological state
that endangers the caregiver or care recipient.
The final item that was not retained in the factor
analysis was the measure of the overall feeling of
burden. As a global indication of caregiver burden, it
is good that this item did not uniquely load on any
single factor. In fact, this item was the most complex
of the variables and was associated with the first
three factors to a modest degree. Guilt was the only
type of burden to which this sense of overall burden
was not related.
Comparison With Previous Research
Conclusion
Our findings differ substantially from previous in-
vestigations of the multidimensionality of caregiver
burden in two important respects: (a) in the factor
structure of the individual items that compose each
type of burden and (b) the latent concept revealed by
the factor analytic technique. Perhaps this is to be ex-
pected, as most of these studies used, at best, only a
few items that were the same or similar to those in
this study. However, our results are quite different
from the limited results reported by Zarit and Zarit
(1990). They identified two factors that they labeled
Role Strain and Personal Strain, along with the bur-
den items of each factor. In contrast to their findings,
our results suggest a more complicated factor struc-
ture. Because so little has been published about the
dimensions of caregiver burden, it is difficult to spec-
ulate about the reasons for these differences. One
possibility is simply that their results were based on a
different group whose characteristics were not re-
ported but probably did not contain any American
Although the findings reported here are limited to
this sample of Pueblo caregivers, this study suggests
the importance of continued research in the area of
caregiver burden. Ideally, additional research would
investigate the multidimensionality of caregiver bur-
den among other ethnic groups, as well as other
groups of American Indians. There is every reason to
believe that the factor structure of burden will vary
between groups based on differences in cultural val-
ues and the existence of resources (including finan-
cial resources and help received from formal service
providers). Ultimately, by identifying the types of bur-
den a particular caregiver experiences or perceives,
service providers may provide support better tar-
geted to the specific needs of the burgeoning caregiv-
ing population. Although better methods of targeting
support services should save money by reducing re-
ceipt of unnecessary or unwanted services, the true
value of this approach will be realized by strengthen-
218
The Gerontologist

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Received November 1, 1999
Accepted July 4, 2000
Decision Editor: Vernon L. Greene, PhD
Vol. 41, No. 2, 2001
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