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The CUIDEME Study: Determinants of Burden in Chilean Primary Caregivers

of Patients with Dementia

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DOI: 10.3233/JAD-122086 · Source: PubMed

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Journal of Alzheimer’s Disease 35 (2013) 297–306 297
DOI 10.3233/JAD-122086
IOS Press

The CUIDEME Study: Determinants of

Burden in Chilean Primary Caregivers
of Patients with Dementia
PY
Andrea Slachevskya,b,c,d,∗ , Marilu Budiniche , Claudia Miranda-Castillof , Javier Núñez-Huasafa,c ,
Jaime R. Silvag , Carlos Muñoz-Neiraa , Sergio Glogerh , Oscar Jimenezi , Bernardo Martorellj
CO
and Carolina Delgadok
a Unidad de Neurologı́a Cognitiva y Demencias, Servicio de Neurologı́a, Hospital del Salvador, Santiago,
Región Metropolitana, Chile
b Physiopathology Program, ICBM and Neurological Sciences Department, Faculty of Medicine,

Universidad de Chile, Chile

c Centro de Investigación Avanzada en Educación, Universidad de Chile, Chile
OR

d Servicio de Neurologı́a, Clı́nica Alemana, Santiago, Chile

e Servicio de Geriatrı́a, Hospital Clı́nico Universidad de Chile, Santiago, Chile
f Escuela de Psicologı́a, Facultad de Medicina, Universidad de Valparaı́so, Valparaı́so, Chile
g Departamento de Salud Mental y Psiquiatrı́a, Facultad de Medicina, Universidad de La Frontera, Chile
h Psicomédica, Santiago, Chile
i Universidad de la Frontera, Temuco, Chile
TH

j Escuela de Salud Pública, Universidad de Chile, Santiago, Chile

k Unidad de Neurologı́a Cognitiva y Demencias, Departamento de Neurologı́a,

Hospital Clı́nico Universidad de Chile, Santiago, Chile

AU

Accepted 17 January 2013

Abstract.
Background: Caring for a person with dementia is associated with well-documented increases in burden and distress and
decreases in mental health and wellbeing. Studies assessing burden in caregivers of patients with dementia and its determinants
are scarce in Latin America.
Objective: The main objective of this study was to assess the extent and the determinants of burden in informal primary care-
givers of patients with dementia in Chile.
Methods: A descriptive study was conducted using clinically validated scales to assess dementia characteristics and to measure
caregiver variables. Family socio-demographic characteristics and functional status, patient functional dependency and behav-
ioral disturbances, and caregiver psychiatric morbidity were analyzed as independent variables to determine caregiver burden.
Results: Two hundred and ninety-two informal caregivers were included. There were more female (80%) than male caregivers,
consisting mainly of daughters and spouses of the patients. Severe burden was reported in 63% of the caregivers, and 47%
exhibited psychiatric morbidity. Burden was associated with caregiver psychiatric distress, family dysfunction, severity of neu-
ropsychiatric symptoms and functional disability, but neither patient age, gender, nor socioeconomic status impacted burden.
Conclusion: Our results underscore the importance of assessing the consequences of dementia in both caregivers and patients
in order to evaluate the real biopsychosocial impact of dementia, as well as the importance of planning appropriate and effective

∗ Correspondence to: Andrea Slachevsky, Centre of Advanced

Research in Education, Universidad de Chile, Periodista José Car-

rasco Tapia Nº 75, Santiago, Chile. Tel.: +56 9 89008262; Fax: +56
2 5754021; E-mail: aslachevsky@me.com.

ISSN 1387-2877/13/$27.50 © 2013 – IOS Press and the authors. All rights reserved
298 A. Slachevsky et al. / Burden in Caregivers of Patients with Dementia
public health interventions in Latin American countries. In addition, interventions targeting caregiver psychological distress,
caregiver familial dysfunction, patient neuropsychiatric disorders, and patient functional disability could potentially diminish
caregiver burden.
Keywords: Alzheimer’s disease, caregiver, dementia, dependency, dependency burden, general health questionnaire, mental
health, neuropsychiatric inventory, psychological distress, Zarit burden interview
INTRODUCTION
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The frequency of dementia increases exponentially
with age, affecting 10% of people over 65 and about
50% of people over 85 [1]. It is estimated that the
number of people globally living with dementia in
CO
2011 was 35.6 million, and this number is expected to
double every 20 years, reaching 65.7 million in 2030
and 115.4 million in 2050 [2]. The majority of these
people will be living in low and middle income coun-
tries (LAMIC), including the southern Latin American
countries (SLAC) [3]. There are approximately 874,
000 people with AD and related disorders in south-
OR
ern Latin America, and this number is expected to
rise by 77% by the year 2050 [2]. A high proportion
of people with dementia need care ranging from the
provision of instrumental activities of daily living, to
full personal care and round-the-clock supervision [4].
TH
Therefore, dementia affects not only the patient, but
also the person who supports them, and this effectively
doubles the number of people concerned [5, 6]. Care-
givers are either formal, i.e., a person who is paid to
care for a patient with dementia, such as healthcare
AU
professionals, or informal, i.e., an individual who pro-
vides care and/or support to a family member, friend,
or neighbor who is chronically ill, frail, or who has a
physical or mental disability. Informal care, measured
as hours spent caregiving, is about 8.5 times greater
than formal services [7]. Contrary to care costs in high-
income countries (HIC), informal care costs in LAMIC
predominate and direct social care costs (accounting
for the direct costs of care in the community by paid
social care professionals and care homes) are practi-
cally non-existent. In LAMIC, caring falls largely on
unpaid informal caregivers [2]. Therefore, assessment
of informal caregivers is fundamental to fully evaluate
the impact of dementia.
Caring for a person with dementia is associated with
high levels of caregiver burden and caregiver psycho-
logical distress. Burden may be exacerbated or reduced
by either patient-related factors (e.g., the severity of
dementia and/or presence of behavioral disturbances)
or caregiver-related factors (e.g., socio-economic
status, education, relationship with patient, and gen-
der). Important differences have been found when
comparing caregiver characteristics between care-
givers in HIC and LAMIC. In the former, the majority
of caregivers are spouses who are living with the
patients [8], while in LAMIC, the main caregiver is
generally the daughter or daughter-in-law. In addi-
tion, in LAMIC, people with dementia generally live
in their households with at least three other people,
often more [9]. The proportion of people with dementia
living in care homes is significantly lower in LAMIC
(11%) compared to HIC (30%) [2]. Moreover, patterns
of behavioral disturbances might vary between devel-
oping and developed countries [10]. In LAMIC, the
impact on caregivers’ lives is enormous, but is gener-
ally overlooked by health services and policy makers.
There are few studies of caregivers of people with
dementia from SLAC [11]. Most of them were carried
out in small samples and reported a divergent propor-
tion of burden and different associations with patient
or caregiver factors [12].
The main objective of the CUIDEME Study was
to assess the extent and the determinants of burden
in informal primary caregivers of dementia patients in
Chile, a higher middle-income country (HMIC) [13].
MATERIALS AND METHODS
Participants
The present is a descriptive study using convenience
sampling, which aimed to include urban community-
living dyads of patients with dementia and their
primary informal caregivers (defined as the person
essentially responsible for providing or coordinating
the patient’s caring) from different settings. Subjects
were recruited between March 2009 and June 2011
and the sources used for making contact with the users
included acting physicians from primary care centers,
secondary level neurological consultations, and care-
giver support groups.
The inclusion criteria for the patient were: i) Clinical
history of a diagnosis of dementia; ii) Global Deterio-
ration Scale (GDS) score ≥3 [14]; iii) Score >57 on the
Short Spanish version of the Informant Questionnaire
of Cognitive Decline in the Elderly (SS-IQCODE)
[15]; and iv) Presence of a primary, unpaid caregiver
 A. Slachevsky et al. / Burden in Caregivers of Patients with Dementia
who had known the patient for a minimum of 10 years
(because the SS-IQCODE evaluates changes over a 10
year time period) and who met with the patient at least
once a week.
Design and procedures
The CUIDEME study survey was a self-completion
questionnaire, using clinically validated scales,
informant-based assessments of patient characteristics,
and self-report questionnaires to measure caregiver
variables. A preliminary, open-ended interview estab-
lished that the person recruited for the study was most
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directly responsible for providing care. After obtain-
ing informed consent, the investigators interviewed
the caregiver to score the GDS. Then, caregivers
were asked to answer self-completion questionnaires
to collect the following data: i) Demographic vari-
ables of patients and caregivers; ii) Socio-economic
status (SES) with the Chilean adaptation of the socio-
OR
economic classification of the European Society for
Opinion and Marketing Research (ESOMAR) which
classifies households into five social grades [16, 17].
The first grade (AB) corresponds to high income,
the next three grades (Ca, Cb, D) represent middle
TH
income, and the last grade (E) denotes slow income;
iii) Confirmation of diagnosis of dementia using the
SS-IQCODE, a structured interview of the caregiver
for the purpose of screening the mental impairment
of the patient. Compared to the original 26 items
AU
IQCODE, the SS-IQCODE consists of 17 questions
about changes over the previous 10 years in the
patient’s cognitive functions based on his or her func-
tioning in everyday scenarios. The total score of the
SS-IQCODE ranges from 17 to 85 points. A cutoff
score above 57 suggests a diagnosis of dementia [15];
iv) The severity of dementia was graded with the GDS,
a clinician rated scale that stages the severity of demen-
tia within a range of 1 (absence of dementia) to 7
(severe dementia); v) Functional impairment of the
patient was assessed with the Spanish version of the
Activities of Daily Living Questionnaire (SV-ADLQ),
an informant-based assessment of basic and instru-
mental functional abilities in dementia patients [18].
The score ranges from 0 to 100. A high score indi-
cates a high level of functional capacity; vi) Changes
in patient behavior were measured with the Neuropsy-
chiatric Inventory Questionnaire (NPI-Q). The NPI-Q
is an informant-based questionnaire that evaluates the
presence of 12 neuropsychiatric symptoms, rating its
severity on a 3-point scale (1-mild; 2-moderate; 3-
severe). We used two scores derived from the NPI-Q,
299
the number of symptoms endorsed by caregivers (range
0–12), as well as the severity of symptoms reported
(range 0–36) [19]; vii) Caregiver burden was mea-
sured using the Chilean version of the Zarit Burden
Interview (ZBI), a highly reliable scale (Cronbach’s
alpha of 0.92 in our study) which has 22 items that
assess the caregivers’ appraisal of the impact that their
involvement in caregiving tasks has on their life [20].
PY
Each item is scored on a 5-point Likert scale with a
total score ranging from 22 to 110 [21]. According to
the total score, the caregiver is classified as without
burden (<46), mildly burdened (47–55), or severely
burdened (>55) [20]; viii) Psychological impact on
the caregiver was assessed using the 12-item General
Health Questionnaire (GHQ-12) [22] as a measure of
psychiatric morbidity. The GHQ-12 gives a total score
out of 12. A person scoring 4 or more is classified
as having psychiatric morbidity [23]; ix) Family func-
tioning was assessed using the family Apgar score, a
five-item survey that measures satisfaction with fam-
ily support across five domains [24]. The total score
ranges from 0 to 10. A score above 7 suggests a highly
functional family, 4–6 a moderately dysfunctional fam-
ily, and 3 or below a severely dysfunctional family
[25, 26].
Data analysis
Descriptive and comparative analyses were con-
ducted using either Student’s t-test for continuous
variables or a chi-square test for categorical variables.
Multiple linear regression analysis was performed
to study patient and caregiver variables associated
with caregiver burden. Variables with p < 0.05 were
retained in the final regression model. When corre-
lations between any of these variables were >0.50,
additional models were examined to rule out multi-
collinearity. The analyses were conducted at p value
<0.05 (two-tailed) with PASW 18 for Microsoft Win-
dows (SPSS Inc., Chicago, IL, USA).
RESULTS
Sample characteristics
We recruited 339 dyads of unpaid caregivers and
patients with dementia. 48 caregivers were excluded
because their respective patients’ SS-IQCODE scores
were below or equal to 57 points and/or the GDS scores
were below 3. The final sample consisted of 291 dyads.
84% (n = 238) of the caregivers resided in Santiago, the
capital of Chile, and 15.9% (n = 45) resided in another
300 A. Slachevsky et al. / Burden in Caregivers of Patients with Dementia
province. All of them resided in urban areas. 98.9%
(n = 288) of the caregivers were relatives of the patients
[40% (n = 117) were spouses, 43% (n = 124) were sons
or daughters, 5% (n = 14) brother or sister, and 4%
(n = 11) relatives in law] and 1% (n = 3) were friends.
Concerning the availability of help [data were available
in 72.8% (n = 212) of the sample], 56% (n = 163) of the
subjects reported that nobody else helped them with
PY
caregiving; 43.6% (n = 127) of the subjects reported
that another (unpaid) person helped them in caregiv-
ing; and 21.6% (n = 63) of cases received help from
a caregiver paid by the patient’s family. There were
more female than male caregivers (74.9%, n = 219)
CO
(χ1,291 = 74.26, p < 0.001) and more female than male
patients (63.4%, n = 185) (χ1,291 = 21.45, p < 0.001).
Main characteristics of patients and caregivers are
shown on Tables 1, 2, and 3.
Determinants of caregivers’ burden
OR
To explore which factors explained the variance in
caregiver burden, we performed a linear regression
using burden (ZBI score) as the dependent variable
and patient-based factors (age, years of education, gen-
der, SV-ADLQ score, and NPI-Q severity score), and
TH
caregiver-based factors (age of the caregiver, years
of education, gender, socio-economic status, GHQ-12
score, and Apgar score) as independent variables. GDS
and number of symptoms in the NPI-Q were excluded
from the model due to the strong correlations between
AU
GDS and the SV-ADLQ (Spearman’s rho = 0.801,
p < 0.001), and between the NPI-Q severity score
and number of symptoms in the NPI-Q (Spearman’s
rho = 0.924, p < 0.001). A significant model accounting
for 35.0% of the ZBI variance emerged [r2 = 0.34; F
(11;181) = 8.428; p < 0.001]. The model included NPI-
severity, SV-ADLQ, GHQ-12, and Apgar scores (See
Table 4). In addition, an ANOVA model with the ZBI
score as the dependent variable and the five levels
of socioeconomic status as a factor revealed that ZBI
score did not differ significantly among the five groups
(F4,253 = 0.877, p = 0.47).
To determine which of the 12 symptoms evaluated
by the NPI-Q scale explained the variance in the ZBI
score, we performed a second multiple linear regres-
sion analysis with the ZBI score as the dependent
variable and the severity of the 12 NPI-Q symptoms
as the independent variables. A significant model that
accounted for 26.6% of the ZBI variance emerged
[r 2 = 0.266; F (12;222) = 6.355; p < 0.001]; this model
included the severity of agitation/aggression and anx-
iety (See Table 5).
DISCUSSION
This is one of largest studies done in a single Latin
American country to determine the prevalence and fac-
tors associated with burden of informal caregivers of
patients with dementia. The main results of this study
were as follows: i) The majority of caregivers were
women, mainly daughters and spouses of patients; ii)
Caring was associated with high levels of caregiver
burden and high rates of psychiatric morbidity; iii)
Burden was associated with distress, family dysfunc-
tion, severity of patient neuropsychiatric symptoms,
and functional impairment; iv) Socioeconomic status
did not impact burden.
Most of the caregivers were female, mainly spouses
and daughters of the patient [9, 27, 28]. This result
differed from other studies done in LAMIC that
showed that most of the caregivers are daughters and,
less frequently, spouses [9]. Seventy percent of the
patients lived in a two or three person household.
This also diverged from other LAMIC countries, in
which patients typically lived in large households with
extended families [29]. In contrast to other LAMIC,
the regular household size in Chile is generally smaller,
with an average of 3.5 people [30].
In this study, we found that 62.9% of the caregivers
reported severe burden in the ZBI with a mean score of
63. The rate of severe burden is quite variable among
studies, ranging from more than 80% in Spain [31]
to 30% in a study in the USA of patients with mild
cognitive impairment (MCI) [32] to 10% in Colom-
bia [12]. Compared to our study, the mean ZBI score
reported in other studies in Latin American countries
(LAC) have been either higher (97 in Argentina [33])
or lower (29 in Argentina [34], 39 in Panama, 43 in
Uruguay, and 58.4 in Mexico [9]). However, most
of the mentioned studies, including the present one,
rely on convenience sampling, which could have had a
higher level of burden than a population-based proba-
bilistic sample. In a recent multi-site population-based
study carried out in several LAMIC, which included
673 care recipient/caregiver dyads, a lower level of
burden was described where the mean Zarit Burden
scores ranged between 17.1 and 27.9 by site [11].
Besides caregiver and patient characteristics, inter-
country variation has been found to account for a
significant percentage of variance in the ZBI ranging
from 7.1% to 29% [9, 11, 28]. This international vari-
ability may be explained by several factors, such as
sociocultural influences (i.e., intercultural differences
in the values and appraisal of caring) [9]. Inter-center
variability may also reflect other factors, such as
 A. Slachevsky et al. / Burden in Caregivers of Patients with Dementia 301

Table 1
Patients and caregivers main demographic characteristics
Patients (n = 291) Caregivers (n = 291)
Agei,ii 77.39 ± 10.6 (45–103) 60.1 ± 13.9 (20–91)
Gender n (%)iii,iv
Female 185 (63.6%) 219 (75.3%)
Male 106 (36.3%) 72 (24.7%)
Years of educationi,v 5.36 ± 3.61 (0–18) 7.3 ± 3.7 (2–22)
Living with the caregiveriii

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Yes 224 (77%)
No 67 (23%)
Living placeiii
Family’s home 283 (97.3%)
Institution 8 (2%)
Number of people living with the patientiii,vi
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Patients living alone 9 (3.1%)
Two people living at home (including the patient) 97 (33.3%)
More than two people living at home 106 (36.4%)
Patient’s Health System Insuranceiii
Public 217 (74%)
Private 37 (13%)
Other 17 (6)
No Insurance 4 (1)
Place of residenceiii
OR

Santiago (capital of Chile) 238 (84%)

Another city 45 (15.9%)
Family income (ESOMAR classification)iii
AB (Higher income) 59 (20.3%)
Ca (Upper– middle income) 54 (18.6%)
Cb (Middle income) 93 (32%)
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D (lower middle class) 71 (24.4%)

E (Low– income) 14 (5.8%)
i Results expressed on mean ± SD, (range); ii Caregivers were significantly younger than patients (t = 14.37,

p < 0.001); iii Results are expressed in n (%); iv Caregivers and patients significantly differed in gender
distribution: (χ1, 576 = 10.16, p = 0.001); v Caregivers and patients did not differ in years of education
(p > 0.05); vi Data missing in 79 patients (27.1%).
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Table 2
Main clinical characteristics of the caregivers
Zarit Burden Scale (ZBI) 63.99 ± 16.26 (24–104)
Severe burden on the ZBI* (ZBI > 56)ii,iii 62.9% (183)
Mild burden (47 > ZBI < 55)ii,iii 11.3% (33)
No burden (ZBI < 46)ii,iii 13.1% (38)
General Health Questionnaire-12 (GHQ-12) 3.64 ± 2.75 (80–12)
Psychiatric Morbidity: Casesii,iv 47% (n = 133)
Family Status: Family Apgar Scorei 7.03 ± 2.71 (0–10)
Functional Family (Apgar > 7) 64.3% (n = 187)
Moderate dysfunctional family (4 > Apgar <6) 23% (n = 67)
Severe dysfunctional family (Apgar < 3) 12.4% (n = 37)
expressed on mean ± SD, (Range); ii Results are expressed in % (n); iii Available in
i Results

254 careers; iv Psychiatric Morbidity case: General Health Questionnaire-12 > 4.

sample selection, type of dementia, knowledge about
dementia, and/or availability of social support [35, 36].
Aspects of both the caregiver and the patient may
influence the degree of burden. In our study, psycholog-
ical distress of the caregiver accounted for a significant
variance in burden. Although this may seem to be
an obvious outcome, the EUROCARE study reported
a lack of association between caregiver burden and
distress evaluated by the GHQ-12 [28]. This result is
inconsistent with our findings and with other studies
that have reported a positive association [37–39]. Nev-
ertheless, the existence of discrepancies among studies
suggests that psychological wellbeing and caregiver
burden are different constructs with different deter-
minants and perpetuating factors [28, 40]. Subjective
burden is a caregiver-specific concept that refers to
302 A. Slachevsky et al. / Burden in Caregivers of Patients with Dementia

Table 3 psychiatric morbidity (evaluated by the GHQ-12). This

Main clinical characteristics of patients
Dementia severity
GDS (1–7)* 5.25 ± 1.05 (3–7)
GDS**
3 2 (0.7%)
4 93 (32%)
5 61 (21%)
6 102 (35%)
7 34 (12%)
prevalence is quite similar to those described in other
studies of dementia caregivers. The 10/66 Dementia
research group, using a cut-off of 3 on the GHQ-12,
reported a prevalence of psychiatric morbidity between
40 and 75% in developing countries (64% in LAC)
[29]. The EUROCARE study reported a mean preva-
lence of 58% (ranging in different countries between

PY
40 and 75%) of psychiatric morbidity in European
Functional impairment
caregivers of dementia patients [28]. In an epidemi-
SV-ADLQ* 67.34% ± 22.19% (7–100%)
ological study of 15–64 year old Chileans, Araya and
Neuropsychiatric symptoms
NPI-Q Severity Score* 13.07 ± 8.46 (0–36) colleagues reported a prevalence of 26.7% for com-
NPI-Q number of symptoms* 6.36 ± 3.24 (0–12) mon mental disorders [41]. Our results show that the
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NPI-Q Frequency rate of psychiatric disorders in caregivers of people
Any NPI-symptom 97.6% (285)
Delusions 56.75%
with dementia is almost doubles that of the general
Hallucinations 39.58% population [23].
Agitation/Aggression 50.34% Caregiver burden was strongly related to family sta-
Dysphoria/Depression 62.50% tus. Similar results have been reported in Colombia
Anxiety 61.15%
Euphoria/Elation 17.57%
using the Family Apgar score and in the USA using
the Family Assessment Device [42, 43]. Family status
OR

Apathy /Indifference 83.11%

Disinhibition 44.26% refers to the quality of familial relationships in different
Irritability/Lability 63.39% dimensions. Losada et al. [44] conveyed that famil-
Aberrant Motor Behavior 52.21%
Nighttime Disturbances 47.12% ism, defined as “a strong identification and attachment
Appetite/Eating Disturbances 57.43% of individuals and their families, and strong feelings of
*Results expressed on mean ± SD. (Range); **Results are expressed loyalty, reciprocity and solidarity among members of
TH

in n (%); GDS, Global Deterioration Scale; SV-ADLQ, Spanish Ver-
sion of the Activities of Daily Living Questionnaire; NPI-Q, Brief
form of the Neuropsychiatric Inventory Questionnaire.
the emotional reactions that a caregiver experiences
AU
the same family”, can have positive influences on care-
giver distress when the family is perceived as a source
of support, which, in our sample, was not the case.
We did not find any relationship between burden and
SES or educational level of the caregiver. Other studies

as a direct result of the demand of caring. GHQ dis- have reported an inverse relationship between income
tress refers to a more objective set of stress responses and level of strain, i.e., caregivers with low income or
that can arise for any reason [40]. In our study, high financial strain exhibited higher burden [2, 45].
approximately half of the caregivers (46.9%) presented It is difficult to compare our results with these studies

Table 4
Multiple regression
Unstandardized Standardized Beta p
coefficient coefficient
B Std. Error
Constant 68.559 12.834 0.000
GHQ-12 score 0.600 0.227 0.175 0.009*
Age of patient −0.181 0.106 −0.128 0.091
Gender of patient −3.474 2.343 −0.105 0.140
Education of patient (y) −0.367 0.375 −0.084 0.330
Age of the caregiver 0.048 0.083 0.0041 0.568
Gender of caregiver 1.836 2.507 0.051 0.465
Education of the caregiver (y) −0.162 0.384 −0.038 0.673
Apgar score −1.479 0.379 −0.253 0.000*
Socio-economic status 0.267 0.969 0.019 0.783
NPI-Q Severity 0.498 0.138 0.267 0.000*
SV-ADLQ 12.089 5.677 0.168 0.035*
*p < 0.05. GHQ-12, 12-item General Health Questionnaire; Apgar score, Family Apgar Score;
NPI-Q, Brief form of the Neuropsychiatric Inventory Questionnaire; SV-ADLQ, Spanish Version
of the Activities of Daily Living Questionnaire.
 A. Slachevsky et al. / Burden in Caregivers of Patients with Dementia 303

Table 5
Multiple regression with severity of 12 neuropsychiatric symptoms of the NPI-Q and Zarit
Unstandardized coefficient Standardized p
coefficient
B Std. Error Beta
(Constant) 52.633 1.962 0.000
Delusion 0.863 0.955 0.067 0.367
Hallucinations 0.247 1.045 0.019 0.813
Agitation/Aggression 2.660 1.070 0.197 0.014*
−1.577 −0.115

PY
Depression 0.987 0.112
Anxiety 2.321 0.960 0.169 0.016*
Euphoria/Elation 0.573 1.356 0.029 0.673
Apathy/Indifference 2.029 1.056 0.139 0.056
Disinhibition 0.071 1.088 0.005 0.948
Irritability/Lability 1.099 1.164 0.079 0.346
CO
Aberrant Motor Behavior 0.578 0.890 0.043 0.517
Nighttime Disturbances 1.104 0.867 0.087 0.204
Appetite/Eating Disturbances 0.217 0.907 0.016 0.811
*p < 0.05.

due to methodological differences. Indeed, SES is only diverse functional domains [18]. Secondly, most stud-
a proxy of income. Other factors besides income, such ies have pooled cognition and functional impairment
as education, influence SES. Consistent with our find- together in a global cognitive-functional status score.
OR

ings, Arango et al. [12] and Allegri et al. [34] reported
no relationship between SES and caregiver burden in
samples of Colombian and Argentinian family care-
givers, respectively. However, in Argentina, an inverse
relationship was found between education and burden.
TH
A construct combining cognition and functional status
probably allows for a more comprehensive measure-
ment of dementia severity. The negative association
between caregiver burden and the degree of func-
tional impairment reported in some studies has been

In line with this, in Spain, educated caregivers had a
higher level of health-related quality of life than less
educated caregivers [31]. In the multinational EURO-
CARE study, 4.5% of the variance in burden was due to
financial dissatisfaction [28], possibly accounting for
AU
attributed to the existence of a caregiver’s progres-
sive adaptation to both the deterioration and increased
needs of a patient with dementia [31].
The association between burden and behavioral and
psychological symptoms of dementia (BPSD) is one

the different perceptions of SES between countries.
We found that functional impairment was associated
with the degree of caregiver burden. The evidence on
the relationship between caregiver burden and func-
tional status has been inconsistent. Some studies have
found that functional status is associated with caregiver
burden [45, 46] but others have not [27]. Cognition
[40], or cognitive-functional status, has been found to
be a predictor of caregiver burden, but explained less
variance than behavioral disturbances [33]. Indeed,
30% of caregivers of patients with MCI (without
significant functional impairment) reported severe bur-
den [32]. Also, some studies reported an association
between caregivers’ burden and the clinical severity of
dementia, measured by the Clinical Dementia Rating
Scale; a scale evaluating both cognitive and functional
impairment, but not with cognition alone), while oth-
ers did not find any association between burden and
either dementia severity or cognition [34]. These diver-
gent results may be explained by the different methods
for measuring functional-cognitive status. Firstly, stud-
ies used different functional scales that could assess
of the strongest results reported in most studies [33,
34, 40, 46–48]. We found that only positive symptoms
(agitation/aggression and anxiety) were associated
with burden. Discrepant results have been described
in the relationship between specific NPI symptoms
and burden. For example, Machnicki and collabo-
rators [33] reported an association between positive
symptoms, but not negative symptoms such as apathy
and depression. Among caregivers living within the
community along with the patient, Matsumoto et al.
[49] reported that agitation/aggression and irritabil-
ity/lability might significantly affect caregivers. Other
studies have reported that neither negative symptoms
such as depression or apathy nor positive symptoms
such as irritability and psychosis are associated with
burden [37, 50]. It is worth mentioning that there are
no studies testing causal mechanisms by which spe-
cific symptoms exert more impact on caregiver mental
health than others [48].
One limitation of the present study might be
that it assesses only the subjective experience of
the caregiver, instead of considering independent
304 A. Slachevsky et al. / Burden in Caregivers of Patients with Dementia
observer-based assessments of the caregiver’s psy-
chological state, relying on the caregiver’s subjective
perception only. However, the availability of well-
validated, self-administered questionnaires to evaluate
caregiver psychological status, burden, and family sta-
tus guarantees the reliability of this methodology. Also,
we did not consider patient-related factors that have
been previously associated with the amount of burden,
PY
such as the type of dementia [51], because our study
included patients from the primary care health system,
where it is usually difficult to determine the etiology
with certainty due to the lack of clinical resources and
limited expertise of general practitioners in the dif-
CO
ferential diagnosis of dementia [35]. Another relevant
limitation is the use of convenience sampling, which
could have resulted in an over-estimation of burden
compared to a population-based sample [11].
In conclusion, our study showed that informal care-
givers of patients with dementia presented high levels
of burden, family dysfunction, and distress. Burden
OR
was associated with caregiver-related factors, such as
psychological distress and familial dysfunction, and
with patient-related factors, such as BPSD and func-
tional impairment. However, this cross-sectional study
did not allow us to determine if there are causal links
TH
between the above variables and burden. This issue
should be addressed in a cohort study. Our study
addresses specifically the emotional consequences of
caregiving a patient with dementia. Further research is
needed to allow a more comprehensive understanding
AU
of the impact of dementia caregiving on the grounds
of other biopsychosocial factors (e.g., physical burden,
direct and indirect economic costs, and the amount of
time spent in providing care to the patient with demen-
tia) [52, 53].
In synthesis, our results highlight the impor-
tance of assessing the consequences of dementia in
both caregivers and patients when evaluating the
biopsychosocial impact of dementia, as well as the
importance of planning appropriate and effective pub-
lic health interventions. In addition, according to our
results, interventions targeting caregiver psycholog-
ical distress, caregiver familial dysfunction, patient
neuropsychiatric disorders, and patient functional dis-
ability could potentially diminish caregiver burden.
ACKNOWLEDGMENTS
We thank Dr. Oscar L. Lopez and another anony-
mous reviewer for their helpful observations, Hector
Galaz for helping in data base management and
statistical analysis, and Emmanuel Aguilar-Posada,
Katia Salas Mena, and Carla Salas Mena for their
English proofreading of the manuscript.
This work was funded by Fondecyt 1100975 (to
AS, CD, and CM); Fondecyt 11100457 (to CM), PIA-
CONICYT Proyect CIE-05 (to AS and JN), and Project
“IV concurso de Investigación SSMO Santiago-Chile”
(to AS, MB, and JN).
Authors’ disclosures available online (http://www.j-
alz.com/disclosures/view.php?id=1646).
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