resilience, psychological - caregivers - dementia - depression - quality of life
resiliência psicológica - cuidadores - demência - depressão - qualidade de vida
Dementia leads to a progressive and irreversible cognitive and functional impairment[1]. People with dementia require continuous care, which, in most cases, is carried
out by their own family members[1]. Caregivers can be particularly burdened by the constant symptoms of the disease[2]. Some studies have shown that cognitive impairment, dependence in activities of
daily living and behavioral disorders of people with dementia are probably the most
important predictors of burden and depression in caregivers[3],[4],[5],[6],[7]. Consequently, high levels of anxiety, depression, emotional burden and low levels
of subjective well-being, self-efficacy and quality of life have been observed in
caregivers[2],[3],[8].
Caregivers face many difficulties; however they may also experience positive emotional
responses[9]. Resilience, satisfaction with caregiving, coping, social support and a strong sense
of spirituality have been posited as protective factors that mediate negative health
outcomes[6]. Other mediating mechanisms are coping strategies and a sense of coherence[9]. Coping strategies are a dynamic set of cognitive and behavioral efforts to cope
with internal and external demands perceived as burdens when compared with personal
resources[10]. In contrast, the sense of coherence depends on the ability to realize that the
situation is understandable or predictable and to perceive one’s ability to cope in
a difficult situation and to find meaning in everyday events or problems faced[11].
Resilience has been defined as one’s capacity for successful adaptation when faced
with the stress of adversity[12]. One of the mechanisms by which resilience facilitates adaptation has been described
as the ability to identify what is stressful, realistically appraise one’s capacity
for action, and solve problems effectively[13]. The construct can be considered as a dynamic process involving the interaction
between internal or external risks and protective factors that act to modify the effects
of an adverse life event on the individual[14]. Resilience is not invulnerability to stress, but, rather, the ability to recover
from negative events[14]. This concept corresponds to a transactional process, mediated by the interaction
between the individual and the environment.
Resilience is also considered as a personality characteristic[15]. Some personality factors, such as a sense of competence, may moderate the relationship
between caring and burden and, consequently, are associated with positive feelings
in caregiving[8],[15]. In general, greater control over life helps adaptation and improves understanding
of the situation, acceptance of changes and the confidence of caregivers in their
own strength and inn the affective bonds shared with care recipients[2]. Also, optimistic people make a subjective estimate of the probability of achieving
goals or desired results based on other factors, such as self-efficacy (belief in
their own capacity for starting actions and dealing with life) and internal locus
of control or contingency (how individuals expect life events or results to be motivated
by their actions)[8].
However, in dementia research, it is not clear whether caregivers’ resilience is an
individual characteristic or related to the clinical variables of people with dementia.
In this context, we aim to investigate the relationship between resilience and sociodemographic
and clinical factors of people with dementia. Our hypothesis is that caregivers’ resilience
is a personality trait, independent from the clinical symptoms of the person with
dementia.
METHODS
Participants
In a cross-sectional design, we included 58 people with dementia and caregiver dyads
consecutively selected, according to their physicians’ referral. Participants attended
a dementia outpatient clinic in Rio de Janeiro for routine follow-up appointments
The people with dementia were diagnosed with possible or probable Alzheimer’s disease,
vascular dementia and mixed dementia according to the Diagnostic and Statistical Manual
of Mental Disorders, Fourth Edition (DSM-IV-TR)[16]. People with mild to moderate dementia according to the Clinical Dementia Rating[17] and scores ranging from 13 to 26 in the Mini-Mental State Examination (MMSE)[18] were included in the study. We excluded patients with more severe dementia due to
difficulties in assessment. To ensure the findings were applicable to dementia rather
than to other clinical problems, people with dementia with uncontrolled clinical problems,
psychiatric disorders, aphasia, head trauma, alcohol abuse and epilepsy, as defined
by the DSM-IV-TR[16] criteria, were excluded from the study. The primary caregiver was defined as the
main person responsible for the care of the person with dementia. We included only
informal caregivers. We excluded caregivers with a reported history of psychiatric
or cognitive disorders. The caregivers provided detailed information about their care
recipients. All caregivers had been previously informed of the diagnosis. The person
with dementia completed assessments for quality of life (QoL), cognition and awareness
of their disease. Caregivers had QoL, resilience, depression, hopelessness, anxiety
and burden of care assessed. They also provided information about the person with
dementia, including demographics, mood, neuropsychiatric symptoms, dementia severity
and the ability to perform activities of daily living.
This study was approved by the Ethics Committee of the Institute of Psychiatry of
the Federal University of Rio de Janeiro (IPUB/ UFRJ) and all people with dementia
and caregivers signed informed consent forms prior to the first interview.
Measurements
Sociodemographic data for patients and caregivers were gathered using a structured
questionnaire. We used the Brazilian adaptation of all clinical instruments.
Caregivers’ Measurements
Resilience
The Resilience Scale by Wagnild and Young, is the most-used in dementia research[12]. It has 25 items that measure levels of positive adaption in the face of adverse
life events. The scale considers resilience construct, serenity, perseverance, self-confidence,
sense of life and self-sufficiency[19]. The scale scores range from 25 to 175, with higher values indicating greater resilience.
Hopelessness
The Beck Hopelessness Scale[20] is a self-report instrument and has 20 items that investigate negative expectations
of the future. The scale scores range from zero to 20, with higher values indicating
greater hopelessness.
Quality of Life
The Quality of Life in Alzheimer’s Disease Scale (QoL-AD) – caregivers’ version (CQoL)[21] comprises 13 items. The total score ranges from 13 to 52. Higher scores indicate
a higher level of QoL.
Burden
The Zarit Burden Interview[22], comprises 22 items that measure the impact of the person with dementia’s illness
on the caregiver’s life. Scores range from zero to 88, with higher scores indicating
greater level of burden.
Depression
The Beck Depression Inventory[20], is a self-report scale. The scale scores range from zero to 63, with higher scores
indicating an increased level of depression.
Anxiety
The Beck Anxiety Inventory[20], has 21 items. The scale scores range from zero to 68, with higher scores indicating
a higher level of anxiety.
Cognition
The MMSE[18], is an instrument that comprises tests of orientation, registration, short-term
memory, language use, comprehension and basic motor skills. The total score ranges
from zero to 30.
People with Dementia Measurements
Severity of Dementia
The full protocol of the Clinical Dementia Rating[17], in which the possible stages of severity include 0 (no dementia), 0.5 (questionable
dementia), 1 (mild dementia), 2 (moderate dementia) and 3 (severe dementia).
Quality of Life
The QoL-AD[21] is the same scale used to assess the caregivers’ QoL, but we used both the self-report
of the person with dementia’s (PQoL) and the caregiver’s perspective about the patient
(C-PQoL)[21]. We analyzed the total scores separately. The total score ranges from 13 to 52.
Cognition
The MMSE[18] was also used to assess the caregivers’ cognition.
Functionality
The Pfeffer Functional Activities Questionnaire[23] has ratings for each item ranging from normal (0) to dependent (3), with a total
of 30 points. Higher scores indicate worse functional status.
Depression
The Cornell Scale for Depression in Dementia[24] assesses mood symptoms, physical signs, circadian functions and behavioral symptoms
related to depression among people with dementia. Scores above 13 indicate the presence
of depression.
Neuropsychiatric Symptoms
The 12-item Neuropsychiatric Inventory[25] was applied. The total score ranges from zero to 144. Higher scores indicate greater
levels of neuropsychiatric symptoms.
Awareness of the Disease
We applied the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia[26], a 30-question scale with scores based on the discrepancies between the reports
of the person with dementia and the caregivers about awareness of cognitive deficits,
social relationships, family relationships, instrumental and basic activities of daily
living and affective relationships. The ratings range from preserved (0–4), mildly
impaired (5–11), moderately impaired (12–17) to absent (over 18) awareness of disease.
Statistical analysis
All variables were inspected for normality before analysis. The parametric variables
were described by their mean and standard deviations. The sociodemographic and clinical
characteristics of the caregiver-person with dementia dyads were analyzed with descriptive
statistics. We used the independent t-test, the chi-square test and the ANOVA test
to assess the relationship between resilience and sociodemographic and clinical variables.
Matrices of Pearson’s correlations were created to investigate correlations between
resilience and age, gender, educational level, duration of the disease, awareness
of disease, cognitive function, functional activities, depressive symptoms, anxiety,
hopelessness and caregiver burden. To control for family-wise error rates, only results
with p ≤ 0.01 were considered significant.
Based on the significant correlations, multivariate linear regressions were performed
to determine the factors related to the caregivers’ resilience. The best models were
selected on the basis of a trade-off between the highest explained variance (R2) and highest cross-validity (adjusted R2).
All statistical analyses were performed with SPSS software for Windows version 22.0.
For all analyses, with the exception of the correlations, the α-level was set at p
≤ 0.05.
RESULTS
Sociodemographic Characteristics
Caregivers
Most caregivers were female (79.3%) and married (77.6%), with a mean age of 62.5 ±
13.4 years. Mostly, caregivers were adult children of the person with dementia (51.7%).
A large number of caregivers (43.1%) reported full time daily care of the person with
dementia, 69% received assistance with the care, 51.7% presented with clinical problems
(spinal problems, osteoporosis and hypertension), and 55.2% reported emotional problems.
People with Dementia
The majority of the people with dementia were female (56.9%) with a mean age of 78.2
± 6.66 years. The mean age of onset of dementia was 73.1 ± 7.59 years. The people
with dementia had an average of 5.2 ± 3.45 years since disclosure of their diagnosis.
The sociodemographic characteristics of the caregivers and people with dementia are
presented in [Table 1].
Table 1
Sociodemographic characteristics of caregivers and people with dementia.
|
Caregivers
|
Total (n = 58)
|
|
Age, mean (SD)
|
62.5 (13.44)
|
|
Schooling, mean (SD)
|
11.9 (3.02)
|
|
Females (%)
|
46 (79.3)
|
|
Marital status (%)
|
|
Singles
|
6 (10.3)
|
|
Married
|
45 (77.6)
|
|
Widowers
|
3 (5.2)
|
|
Divorced
|
4 (6.9)
|
|
Kinship (%)
|
|
Children
|
30 (51.7)
|
|
Spouses
|
26 (44.8)
|
|
Others
|
2 (3.4)
|
|
Time of care (daily) (%)
|
|
Full
|
25 (43.1)
|
|
Less than 6 hours (%)
|
11 (19)
|
|
6 hours
|
4 (6.9)
|
|
8 hours
|
7 (12.1)
|
|
12 hours
|
5 (8.6)
|
|
Occasionally
|
6 (10.3)
|
|
Duration of caregiver function (months), mean (SD)
|
53.9 (49.32)
|
|
People with dementia
|
Total (n= 58)
|
|
Age, mean (SD)
|
78.2(6.66)
|
|
Schooling, mean (SD)
|
7.5 (3.82)
|
|
Females (%)
|
33 (56.9)
|
|
Marital status (%)
|
|
Singles
|
3 (5.2)
|
|
Married
|
32 (55.2)
|
|
Widowers
|
22 (37.9)
|
|
Divorced
|
1 (1.7)
|
|
Age of onset, mean (SD)
|
73.1 (7.59)
|
|
Years of disease, mean (SD)
|
5.2 (3.45)
|
SD: standard deviation.
Clinical Characteristics of Caregiver-Person with Dementia Dyads
Our sample showed moderate to high levels of resilience, with a mean score of 137.66
± 15.54. The caregivers were not cognitively impaired (28.9 ± 1.39), showed moderate
levels of burden (29.1 ± 15.68) and lower levels of anxiety (8.6 ± 7.89) and depressive
symptoms (7.8 ± 7). The majority of the people with dementia presented as having mild
dementia with a score on the Clinical Dementia Rating of 1 (74.1%) and a mean MMSE
score of 19.7 ± 4.39. The clinical characteristics of the caregiver-person with dementia
dyads are summarized in [Table 2].
Table 2
Clinical characteristics of caregivers and people with dementia.
|
Caregivers
|
Total (n = 58)
|
|
Mean (SD)
|
|
RS
|
137.6 (15.54)
|
|
CQoL
|
36.8 (5.49)
|
|
MMSE
|
28.9 (1.39)
|
|
ZBI
|
29.1 (15.68)
|
|
BDI
|
7.8 (7)
|
|
BAI
|
8.6(7.89)
|
|
BHS
|
3.8 (1.39)
|
|
People with dementia
|
Total (n = 58)
|
|
Mean (SD)
|
|
ASPIDD
|
9.2 (4.24)
|
|
PQoL
|
34.6 (5.21)
|
|
C-PQoL
|
29.8 (5.34)
|
|
MMSE
|
19.7 (4.39)
|
|
CSDD
|
8.7 (6.07)
|
|
FAQ
|
15.7 (7.98)
|
|
NPI
|
15.9 (16.35)
|
|
CDR 1 %
|
43 (74.1)
|
SD: standard deviation; RS: resilience scale; CQoL: quality of life in Alzheimer’s
disease scale (caregivers’ reports on their own quality of life); MMSE: mini-mental
state examination; ZBI: Zarit Burden interview; BDI: beck depression inventory; BAI:
beck anxiety inventory; BHS: beck hopelessness scale; ASPIDD: scale of psychosocial
impact of the diagnosis of dementia; PQoL: quality of life in Alzheimer’s disease
scale (patients’ reports on their own quality of life); C-PQoL: quality of life in
Alzheimer’s disease scale (caregivers’ reports on patients’ quality of life; CSDD:
Cornell scale for depression in dementia; FAQ: Pfeffer functional activities questionnaire;
NPI: neuropsychiatric inventory; CDR: clinical dementia rating.
Factors Related to Resilience of Caregivers
We did not find a relationship between resilience and caregivers’ gender (p = 0.883),
nor clinical (p = 0.807) and emotional problems (p = 0.420). There was no significant
relationship between caregivers’ resilience and the sociodemographic and clinical
characteristics of the person with dementia.
Univariate analysis
We found a correlation between resilience and caregivers’ depressive symptoms (r =
-0.539; p < 0.01), anxiety (r = -0.334; p < 0.01) and CQoL (r = 0.514; p < 0.01).
Caregivers’ resilience is inversely related to their own depressive symptoms and anxiety.
In addition, caregivers with higher scores on resilience also showed higher scores
in CQoL. The significant and non-significant correlations are shown in [Table 3].
Table 3
Correlation between resilience and study variables.
|
Variable
|
R
|
P
|
|
Caregivers
|
|
Schooling
|
-0.119
|
0.374
|
|
Time of care
|
0.122
|
0.360
|
|
CQoL
|
0.514
|
0.000**
|
|
MMSE
|
-0.017
|
0.902
|
|
ZBI
|
-0.276
|
0.036*
|
|
BDI
|
-0.539
|
0.000**
|
|
BAI
|
-0.334
|
0.008**
|
|
BHS
|
-0.195
|
0.142
|
|
People with dementia
|
|
Age
|
0.112
|
0.402
|
|
Schooling
|
-0.041
|
0.76
|
|
Age of onset
|
0.104
|
0.438
|
|
Duration of disease
|
-0.027
|
0.838
|
|
ASPIDD
|
0.088
|
0.512
|
|
PQoL
|
0.213
|
0.109
|
|
C-PQoL
|
0.315
|
0.016*
|
|
MMSE
|
-0.078
|
0.559
|
|
CSDD
|
-0.088
|
0.512
|
|
FAQ
|
0.188
|
0.157
|
|
NPI
|
-0.226
|
0.088
|
|
CDR
|
0.377
|
0.118
|
R: correlation coefficient; P: significance; CQoL: quality of life in Alzheimer’s
Disease scale (caregivers’ reports on their own quality of life); MMSE: mini-mental
state examination; ZBI: Zarit Burden interview; BDI: beck depression inventory; BAI:
beck anxiety inventory; BHS: beck hopelessness scale; ASPIDD: scale of psychosocial
impact of the diagnosis of dementia; PQoL: quality of life in Alzheimer’s disease
scale (patients’ reports on their own quality of life); C-PQoL: quality of life in
Alzheimer’s disease scale (caregivers’ reports on patients’ quality of life; CSDD:
Cornell scale for depression in dementia; FAQ: Pfeffer functional activities questionnaire;
NPI: neuropsychiatric inventory; CDR: clinical dementia rating. *p < 0.05; **p < 0.01.
Multivariate analysis
The linear regression model examined the relationship of the resilience and the variables
that were significantly correlated (depressive symptoms, anxiety and CQoL). The linear
regression indicated that resilience was significantly related to the depressive symptoms
(p < 0.01) and the QoL (p < 0.01) experienced by the caregivers. The final model with
factors associated with resilience explained 37.8% of the observed variance (p < 0.05).
The adjusted R2 values and the standardized regression weights are presented in [Table 4].
Table 4
Regression model of factors related to caregivers’ resilience.
|
Variable
|
B
|
β
|
R2
|
Adj. R2
|
t
|
Significance
|
|
CQoL
|
-1290,8
|
-0.389
|
0.378
|
0.343
|
-2.750
|
0.008*
|
|
BDI
|
-0.734
|
-0.331
|
|
|
-2.097
|
0.048*
|
|
BAI
|
0.128
|
0.065
|
|
|
0.452
|
0.653
|
B: linear coefficient; β: standardized beta coefficient; R2: coefficient of determination;
Adj. R2: adjusted R squared values; CQoL: quality of life in Alzheimer’s disease scale
(caregivers’ reports on their own quality of life); BDI: Beck depression inventory;
BAI: Beck anxiety inventory. *p < 0.05.
DISCUSSION
The current study investigated the relationship between caregivers’ resilience and
the sociodemographic and clinical factors of people with dementia. We found moderate
to high levels of resilience, and a lack of significant relationships, between resilience
and the sociodemographic and clinical factors of people with dementia. We can assume
that resilience is an individual characteristic. Individuals with lower levels of
resilience may be the most concerned and tend to be more susceptible to stress-eliciting
situations[15]. Consequently, they may react more strongly to stressful life events and tend to
choose dysfunctional coping strategies or attributional patterns[15]. Conversely, individuals who are more resilient may have a positive self-image,
self-efficacy and attitude on life[8]. They tend to be realistic, secure, patient and adaptable[5]. Moreover, resilience may allow caregivers to manage and adapt to stressful care
demands[5]. It would be helpful for further research to examine the relationship between cultural
background and resilience to better characterize whether it is a personal trait or
a learned characteristic.
In comparison to caregivers of people with other pathologies, caregivers of people
with dementia tend to develop higher levels of depressive symptoms or burden[4]. Our findings are in line with other studies, as we showed that moderate to higher
levels of resilience were related to lower levels of depressive symptoms[3],[27]. Resilience is a protective factor for depression associated with decreased stress[14]. Previous research has shown that resilience can be understood as the personality
trait that underlies the experience of stressful life events and stronger stress reactivity[5],[15]. Resilient people have the ability to consider a broader range of experience and
to ‘hang loose’ and take what comes, thus moderating extreme responses to adversity[13]. A sense of self-efficacy[13] and internal locus of control[8] facilitate a more resilient behavior when confronting stressful situations, reducing
the stress vulnerability and risk of depression, anxiety and burden[3],[8].
Our study showed a significant relationship between resilience and caregivers’ QoL.
Resilience is considered to act as a protective factor by increasing the QoL, coping
and overall adaptation to difficulties related to caregivers[11]. The QoL involves the individuals’ subjective perceptions about their role in life,
based on their culture and system of values[28]. It is a multidimensional and complex concept that encompasses several dimensions[28]. It seems that resilience helps caregivers maintain their mental and physical stability,
fostering caregiving and providing better health, and QoL for the care recipient[2]. Despite the negative consequences of caregiving, how the caregiver interprets the
situation, the strategies adopted to deal with it, and their features and personality
traits, are crucial variables for the development of different levels of resilience[2]. For these reasons, we can consider that the relationship between resilience and
different variable groups is bidirectional, including depressive symptoms and QoL.
In contrast to some studies[1],[2],[5], our findings showed that resilience was not related to burden. The presence of
burden depends on a series of subjective factors[29]. We can suppose that the clinical symptoms of dementia are possibly not perceived
as uncontrollable by the caregivers assessed in this study. Gallagher et al.[29] have shown that high self-efficacy in dementia caregivers could mitigate the symptoms
of burden and depression. In addition, caregivers with an internal locus of control,
regarding the person with dementia’s behavior, would be less susceptible to the negative
consequences caused by stress[30]. In fact, beliefs about one’s own abilities and internal locus of control are two
factors that support the construct of resilience[8]. Hence, optimistic people with a high degree of self-efficacy will probably show
more resilient behavior when confronting stressful situations, which may reduce the
stress vulnerability and risk of burden.
Another important result of our study is the lack of relationship between resilience
and caregivers’ sociodemographic variables. The majority of our caregivers were female
with moderate levels of schooling. Education is an important factor in Latin American
countries because of the high levels of illiteracy. Educational background might play
a key role in facilitating caregivers’ difficulties, but resilience was not related
to years of schooling.
In addition, our findings showed that resilience was not related to caregivers’ gender.
Overall, female caregivers seem to be more vulnerable. Researchers have shown that
women tend to be more burdened by caregiving tasks, report more difficulties, and
perceive the experience as less rewarding than their male counterparts[15]. Besides, increased stress and burden in females may be due to their involvement
in multiple roles such as wife, daughter, mother, and caregiver[4]. As well as for men, the transition into the caregiving role is marked by the undertaking
of household chores and changes in the care of kin. By contrast, this part of the
transition may be less salient for female caregivers who are often already in charge
of such (household) activities. Thus, different definitions of care may result in
sex-role-specific experiences of burden and their related effects on personality development.
Although the burden tends to be more associated with the female population, one study
showed that constructs like resilience could modulate this association[30]. Hence, the lack of relationship between resilience and caregivers’ gender and schooling
led us to assume that resilience might be related to individual characteristics rather
than sociodemographic characteristics.
LIMITATIONS
We studied a small convenience sample. Further studies should randomize the participants
according to disease severity and dementia etiology. In addition, our study had a
cross-sectional design and, since resilience is a subjective construct, it may increase
over time. A longitudinal study would have allowed us to observe changes in the caregivers’
resilience over time. Despite these limitations, the results of the present study
are notable due to the lack of research on the resilience of dementia caregivers in
Brazil.
In conclusion, the majority of dementia caregiving research has focused on the negative
aspects of care. Overall, our findings offer several clinical contributions to the
positive aspects of care. Our data may allow some comparisons across cultural and
national boundaries, which may be valuable in assessing how different cultural and
psychosocial environments may influence caregivers’ resilience. We found that the
presence of resilience is related to a decrease in caregivers’ depressive symptoms
and increase in their QoL. We can assume that resilience is associated with the individual’s
characteristics and abilities and is not related to the clinical state of the person
with dementia. Understanding the factors related to resilience may lead to the development
of psychological and educational support for caregivers of people with dementia. Support
groups should be focused not only on information and feelings about the diagnosis
and caregiving routines, but also on the factors that may increase resilience among
caregivers, such as task-focused coping strategies and self-efficacy.
