Psychiatry Research ∎ (∎∎∎∎) ∎∎∎–∎∎∎
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Prevalence of major depressive episodes in non-professional caregivers Ángela Torres a,n, Vanessa Blanco b, Fernando L. Vázquez c, Olga Díaz c, Patricia Otero b, Elisabet Hermida b a
Department of Psychiatry, Radiology, and Public Health, University of Santiago de Compostela, Santiago de Compostela, Spain Unit of Depressive Disorders, University of Santiago de Compostela, Santiago de Compostela, Spain c Department of Clinical Psychology and Psychobiology, University of Santiago de Compostela, Santiago de Compostela, Spain b
art ic l e i nf o
a b s t r a c t
Article history: Received 2 June 2014 Received in revised form 18 December 2014 Accepted 19 December 2014
Despite research demonstrating the psychological burden associated with caregiving, there is limited information regarding the real rates of clinical depression among non-professional caregivers (NCs) of dependent patients. The goals of the current study are (a) to report the prevalence of major depressive episodes (MDEs) and the frequency of depressive symptoms in NCs from Galicia (Spain) and (b) to examine the relationship between MDEs and characteristics of caregivers, care recipients, and the care situation. A sample of 504 NCs providing care to persons with all kinds of disorders that result in dependency was randomly selected, and the occurrence of MDEs was assessed by trained interviewers who applied the Structured Clinical Interview for DSM-IV Axis I Disorders-Clinician Version (SCID-CV). Overall, 8.9% of NCs met the criteria for a current MDE. Sleep problems, diminished ability to think or concentrate, and depressed mood were the clinical depressive symptoms most frequently reported. MDEs were significantly more common among NCs older than 55 years old (odds ratio [OR] ¼1.96; 95% confidence interval [CI]: 1.02–3.75) and those who were unemployed (OR ¼ 3.43; 95% CI 1.02–11.48). The findings highlight the magnitude of major depression in this population. & 2015 Published by Elsevier Ireland Ltd.
Keywords: Caregivers Epidemiology Depression Major depressive episode Predictors
1. Introduction Improvements in hygiene and nutrition, medical advances, and social achievements have led to a decrease in mortality and an increase in life expectancy in many countries, especially more developed ones. In parallel, there has also been a notable increase in the number of people in situations of dependency, a phenomenon that will be increasingly noticeable in years to come. In fact, it is estimated that by 2040 the number of people in situations of dependency will increase by an average of 31% in developed countries, with expected increases of up to 20% in Europe and Japan and up to 60% in North America and Australia (Harwood et al., 2004). In European countries, family members—predominantly women —provide 80% of long-term care received by people in situations of dependency (Hoffmann and Rodrigues, 2010). People who assume responsibility for providing care in a non-professional, unpaid manner, based on family or affective ties, are known as nonprofessional caregivers (NCs) (Thompson et al., 2007). Care provided by NCs has clear and major implications for health and social policies; it decreases the usage of formal aid resources and results in a consequent decrease in public spending. However, the amount of
n
Corresponding author. Tel.: þ 34 881812435; fax: þ34 881812430. E-mail address: [email protected] (Á. Torres).
time dedicated to providing care for a dependent person may have consequences on the emotional state of NCs (Covinsky et al., 2003; Arai et al., 2014). Studies consistently report that depressive symptoms and depression are frequent among non-professional caregivers. In a systematic review of depressive disorders in caregivers of dementia patients (Cuijpers, 2005), the risk of having a depressive disorder was 2.8 to 38.7 times higher in NCs than in controls. Similarly, a prospect cohort study (Joling et al., 2010) reported that spouses of patients with dementia had a fourfold risk of being diagnosed with depression and a twofold risk for the prescription of antidepressants when compared with matched controls. NC samples display higher levels of depression than non-caregivers (Pinquart and Sörensen, 2003). It was found that between 40% and 70% of caregivers exhibit clinically significant symptoms of depression, with approximately one-quarter to one-half of these caregivers meeting the diagnostic criteria for major depression (Gallagher-Thompson et al., 1989; Redinbaugh et al., 1995; Schulz et al., 1995; Bookwala et al., 2000; Zarit, 2006). Despite caregivers' justifiable vulnerability to depression, its phenomenology has been insufficiently investigated in this population. Furthermore, generalizability of previous prevalence studies of depression is limited due to the use of convenience samples (e.g., Gallagher-Thompson et al., 1989; Dura et al., 1991) and the focus on caregivers of people with dementia (e.g., Dura et al., 1991; Joling et al., 2010). Moreover, the prevalence of depression has
http://dx.doi.org/10.1016/j.psychres.2014.12.066 0165-1781/& 2015 Published by Elsevier Ireland Ltd.
Please cite this article as: Torres, Á., et al., Prevalence of major depressive episodes in non-professional caregivers. Psychiatry Research (2015), http://dx.doi.org/10.1016/j.psychres.2014.12.066i
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been determined using self-report symptom scales (e.g., Mahoney et al., 2005) instead of using explicit diagnostic criteria, such as those in the various editions of the DSM or the International Classification of Diseases. Although such self-report measures provide important information about the caregiver's degree of depressive symptoms, they do not yield sufficient information to make a clinically sensitive and specific systematized diagnosis of depression disorder using standardized diagnostic criteria. As a consequence, the rate of diagnosable depressive disorders among NCs has not definitively been determined. Since depressive disorders impair daily functioning (Judd et al., 2000)—and in the case of caregivers may also affect the quality of care they provide to their loved one (Williamson and Shaffer, 2001)—we must have adequate knowledge of the prevalence of this disorder among NCs in order to estimate the need for services and the development of specific treatments tailored to the needs of this population. The aims of this study were to examine the prevalence of major depressive episodes (MDEs) according to DSM-IV Axis I diagnostic criteria and related correlates in a representative random community sample that was drawn from Spanish NCs providing care to persons with all types of disorders that result in dependency.
2. Methods
The Barthel Index (BI) (Mahoney and Barthel, 1965; Spanish version of Baztán et al. (1993)) was used to assess the functional independence of the care recipients in terms of in self care and mobility. The BI assesses a person's ability to independently perform 10 basic activities of daily living (ADLs), such as eating, bathing, dressing, grooming, bowel movements, urination, toileting, transfer from chair/bed, walking, and negotiating stairs. A score (0, 5, 10, 15) is assigned depending on the time spent in performing each activity and the need for help to perform it, yielding a final score ranging from 0 (completely dependent) to 100 (completely independent). Thus, the higher the score, the greater the autonomy. The Spanish version of the BI has adequate inter-observer (47–1) and intraobserver (84–97) reliability and good internal consistency (0.86–0.92) (CidRuzafa and Damián-Moreno, 1997).
2.2.2. MDE diagnosis The Spanish version of the Structured Clinical Interview for DSM-IV Axis IClinician Version [SCID-CV] (First et al., 1999) was used to help the evaluators determine clinical diagnoses. The SCID-CV is a structured interview designed to provide information on the most common DSM-IV Axis I disorders in clinical settings. It comprises six modules, A–F, that are respectively targeted at mood episodes, psychotic symptoms, psychotic disorders, mood disorders, substance use disorders, and anxiety and other disorders. Each item corresponds to a diagnostic criterion and is rated “ þ” or “ ” according to whether, in the interviewer's judgment, it is true or false (or at least doubtful) that the corresponding diagnostic criterion is satisfied. SCID-CV ratings are judgments about the diagnostic criteria and not necessarily the patient's answers to questions. It is usually administered in a single session that requires 45–90 min. This diagnostic instrument is widely used and has been determined to be reliable, with K values of 0.70–1.00 (First et al., 2000). The disorder assessed in this study was the presence of MDE, corresponding to module A of the SCID-CV.
2.1. Subjects 2.3. Procedure We used a cross-sectional design, carrying out the study between November 4, 2010, and May 27, 2011. The study sample was randomly extracted from among 18,410 NCs listed in the official register prepared by the Dependency Technical Coordination Unit of the Ministry of Labor and Welfare of the Autonomous Community of Galicia. Galicia is a region in the northwest of Spain with an area of 29,434 km2 and a population of 2,730,337. This register was created on the basis of Law 39/2006 of December 14, the Promotion of Personal Autonomy and Care for People in Situations of Dependency Act (Ley 39/2006, 2006) in order to regulate the basic conditions of equality and care for people in situations of dependency. To be eligible for the study: (a) caregivers had to be a primary caregiver for a family member in a state of dependency (i.e., the person on who rests the responsibility of caring for a dependent family member (Lairizgoitia, 2005)); (b) the care recipient must have their status of dependence recognized by the official organization; (c) the caregiver had to live at home with the person they provided care for; and (d) the person in a situation of dependency must not have a terminal prognosis shorter than 6 months. Those caregivers who did not consent were excluded from the study. The sample size calculation was estimated on the basis of the prevalence of depression ( E6%) and the loss of subjects ( E10%) found in a previous pilot study. This prevalence rate is higher than that found in the Spanish general population, ranging from 2.6% for 1-month prevalence (Ayuso-Mateos et al., 2001) to 4% for 12months prevalence (Gabilondo et al., 2010). Based on the findings of the pilot study, a sample of 486 participants was required in order to achieve accuracy of 7 2 and α ¼ 0.05. We initially contacted 540 subjects to counteract subject loss. The response rate was 93.3%. Thirty-six caregivers declined to participate, leaving a final simple of 504 participants (88.9% women) with a mean age of 55.1 years (S.D.¼ 10.8). These NCs cared for their family members (43.4% of whom were their fathers) who suffered from various diseases (40.7% dementia) and had a mean age of 74.1 years (S.D. ¼ 23.7). The selected caregivers were personally contacted by mail and telephone and were invited to participate in the study after being informed of its nature, objectives, risks, and benefits. Participation was voluntary, and no incentives were offered. The study was approved by the ethics committee of the University of Santiago de Compostela and was carried out in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments.
2.2. Materials 2.2.1. Characteristics of caregivers, care recipients and the caregiving situation An ad hoc questionnaire was employed to collect data on participants' age, gender, marital status, educational level, area of residence, employment status, and monthly income. Information on age, gender, and the disorder that resulted in dependence was collected for the persons in a situation of dependency. With regard to the caregiving situation, information about the care recipient's relationship to the caregiver and the duration (years of care) and intensity (hours per day of care) of care was also assessed.
A research protocol was drawn up detailing the study objectives, design and setting, participants (target population, accessible population, inclusion criteria, exclusion criteria, sampling, and recruitment), measures (predictor variables and outcome variables), bias (non-response, recall bias, and selection bias), data analysis strategy, quality control, data management, schedule, and ethical issues. A pilot study was then conducted, which served as a simulation of the planned study; the goal was to evaluate project feasibility and interviewer competence. The pilot study involved 47 caregivers out of the 52 who had previously been selected at random; four did not give their informed consent, and in one case care recipient died. The assessments were carried out in September 2010 by four psychologists with several years of experience in the evaluation and diagnosis of mood disorders (4–15 years) who had received specific training to evaluate the participants in this study. They received 1 full week of training prior to the pilot test, including the SCID-CV standard training components, and were closely monitored by two clinicians with an average of 20 years of experience in the evaluation and diagnosis of mental health disorders who belonged to both the Department of Psychiatry, Radiology and Public Health and the Department of Clinical Psychology and Psychobiology of the University of Santiago de Compostela. All these interviews were recorded to assess the evaluators' performance and to provide them with feedback. In the pilot test were detected three caregivers who experienced a major depressive episode. Productivity was four interviews per work day, and the average length of interviews was 35–40 min. Subsequently, the NCs were personally contacted and invited to participate in the cross-sectional study. Each participant was interviewed face to face by the above-mentioned trained interviewers at a location near their home provided by social community services. The participants first answered questions about the sociodemographic characteristics of caregivers, care recipients, and the care situation as described above; the functional status of the dependent person was also assessed through the BI (see Section 2). Then, the presence of MDEs was identified by the interviewers with the aid of the SCID-CV. The duration of each interview was similar to that previously estimated in the pilot study ( E40 min). One of the clinical experts supervised interviewers weekly during the study. In addition, a random sample of 10% of interviews were recorded and then analyzed by another expert who supervised the training. To minimize subject dropout, data collection strategies for this type of study were followed, such as planning a systematic series of repeated contact tests, reminders of the interview date, avoiding invasive or annoying procedures for information collection, and presenting the study to the participants in an appealing fashion (Hulley et al., 2013).
2.4. Data analysis Data are expressed as frequencies and percentages for categorical variables or means and standard deviations for continuous variables. The absence of significant relevant differences between respondent and non-respondents NCs was verified
Please cite this article as: Torres, Á., et al., Prevalence of major depressive episodes in non-professional caregivers. Psychiatry Research (2015), http://dx.doi.org/10.1016/j.psychres.2014.12.066i
Á. Torres et al. / Psychiatry Research ∎ (∎∎∎∎) ∎∎∎–∎∎∎ using the chi-square test or Fisher's exact test for categorical variables, and unmatched Student's t-test for continuous variables. Multiple logistic regression analyses were performed to analyze associations among depression and the variables included in the study. For statistical or clinical reasons, some of these variables were redefined as follows: based on distribution, the age variable was classified as r 55 years or 455 years, age of the care recipient as r 83 years or 4 83 years, and duration of care as r8 years or 48 years; to distinguish care during daytime hours from care exceeding those hours, hours per day of care was classified as r12 h or 412 h per day, and to distinguish total dependence from other levels of dependency, dependence status was classified as BI r 20 or BI 420. All logistic regression analyses were performed with and without adjustment for age and gender of the caregiver. As an exploratory method, associations among the three most frequent depressive symptoms and other study variables were analyzed when statistically possible. Specifically, multiple logistic regression analyses were also performed to analyze associations among insomnia or hypersomnia, diminished ability to think or concentrate, and depressed mood (each split into two categories as 0 ¼absent and 1¼ present) and the variables for age of the caregiver, age of the care recipient, care recipient's disorder (redefined as dementia versus other conditions) and duration of care. The results are reported as odds ratios (ORs) with 95% confidence intervals (CIs). All statistical analyses were performed using PASW Statistics 18 software.
3. Results 3.1. Characteristics of caregivers, care recipients, and the caregiving situation As summarized in Table 1, the mean age of the sample was 55.1 years (S.D.¼10.8), ranging from 21 to 86 years. The majority of NCs were females (88.9%), and married or living with a partner (76.0%). More than a half had a primary level of education (57.3%) and were living in a rural area (52.0%), and 16.5% of NCs were employed while they were providing care. More than half (58.5%) of the NCs reported that their monthly income was between 1000 and 2000 Euros. Care recipients had a mean age of 74.1 years (S.D.¼23.7), ranging from 2 to 105, and were predominantly female (72.0%). They had a mean BI score of 16.5 (S.D.¼21.7), which is indicative of a high level of dependence; 40.7% had dementia. NCs mostly provided care to their parents (43.5%) for a mean duration of 11.6 years (S.D. ¼9.3) and a mean intensity of 16.5 h per day (S.D. ¼ 3.5). No statistically significant differences were found between respondent NCs (n ¼504) and non-respondents NCs (n ¼36) on those variables for which information was available. Specifically, there were no differences with respect to age (t (40.35) ¼ 1.28, p ¼0.207), gender (χ2 (1, n ¼540) ¼0.26, p¼ 0.586), area of residence (χ2 (1, n ¼540) ¼3.18, p ¼0.084), disorder of the care recipient (χ2 (4, n ¼540) ¼0.74, p ¼0.834) and relationship with the care recipient (χ2 (3, n ¼540) ¼0.81, p ¼0.826). 3.2. MDE prevalence Caregivers reported a mean of 2.2 depressive symptoms (S.D.¼ 2.2). According to the SCID-CV results, 8.9% (n¼45) of the NCs were currently experiencing a DSM-IV Axis I MDE. The frequency of depressive symptoms is shown in Table 2. The most frequent symptoms reported by those NCs experiencing a current MDE were insomnia or hypersomnia nearly every day (93.3%), diminished ability to think or concentrate (91.1%), and depressed mood most of the day (84.4%). Less frequently reported symptom was feelings of worthlessness and excessive or inappropriate guilt nearly every day. 3.3. Correlates of MDEs Table 3 shows the results of the multivariable logistic regression analyses on the correlates of MDE. Older age (Wald χ2 (1)¼ 4.09; adjusted OR ¼1.96; 95% CI: 1.02–3.75; p ¼0.043) and unemployment status (Wald χ2 (1)¼ 4.00; adjusted OR ¼3.43; 95%
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CI: 1.02–11.48; p ¼0.046) were significantly related to depression in NCs. There were no significant differences between depressed and non-depressed NCs with regard to gender, marital status, educational level, area of residence, monthly income, age of the care recipient, gender, degree of dependence, disorder of the care recipient, care recipient's relationship to the NC, duration of care, or intensity of care. Among the NCs who experienced a MDE, the most common depressive symptoms (insomnia or hypersomnia, diminished ability to think or concentrate, or depressed mood) had no significant relationship with either age of the caregiver, nor the age or disorder of the care recipient or time of care.
4. Discussion The main purpose of this study was to determine the prevalence of DSM-IV Axis I MDEs in a representative sample of NCs. The prevalence of current MDE in the present study (8.9%) was twofold higher than the 4% estimated 12-months prevalence of major depression in the general population (Gabilondo et al., 2010), and also up to twofold higher than the 12-months prevalence rates of major depression in other western European countries (Paykel et al., 2005). Compared with other estimates in caregiver samples, the prevalence obtained in this study was lower than that described in previous reports, where 25–50% of caregivers met the criteria for an MDE (Gallagher-Thompson et al., 1989; Redinbaugh et al., 1995; Bookwala et al., 2000; Zarit, 2006). In a systematic review of studies of caregivers of dementia patients, 22.3% had a depressive disorder (Cuijpers, 2005); this rate is threefold higher than the observed in the present study. One possible explanation for this is that these studies were conducted using convenience samples and did not use standardized diagnostic clinical interviews to establish the diagnosis of depression among caregivers. In contrast, our prevalence is higher than that obtained by Cochrane et al. (1997), who reported that 6.3% of caregivers had affective disorders, and that described by Joling et al. (2010), who found that 2.7% of the spouses of patients with dementia met the criteria for a depressive disorder and 6.9% had new cases of depression by the 6-year follow-up. The discrepancy between our results and those of other researchers may be due to bias in these studies' sample, since in the study by Cochrane et al. (1997) caregivers aged 65 or older were not evaluated, and the study by Joling et al. (2010) focused on the medical records of spouses of persons with dementia, which leaves out those caregivers who do not go to the doctor and those with familial ties other than spousal and conditions other than dementia. Regarding the frequency of depressive symptoms among NCs with a current MDE, 93.3% suffered from insomnia or hypersomnia as a clinical symptom, 91.1% described a diminished ability to think or concentrate, and 84.4% reported depressed mood. The most prevalent symptoms of depression reported in the general population are insomnia, fatigue, and recurrent thoughts of death (Judd et al., 1994). Sleep problems are commonly reported among NCs with and without major depression and are presumed to be linked to the nighttime behaviors of the care recipient (Creese et al., 2008). However, our rates, and particularly the rate of sleep disturbances, were higher than those reported in previous studies of NCs with and without major depression (Yokoyama et al., 1997; McCurry et al., 2007). The second aim of this work was to examine the relationship between current MDEs and variables for the caregiver, the care recipient, and the care situation. We found that age and employment status were related to depression in this sample. Compared to participants r55 years old, those who were 56 or older had approximately a twofold higher risk of depression. This result is consistent with those of a previous study which found that older
Please cite this article as: Torres, Á., et al., Prevalence of major depressive episodes in non-professional caregivers. Psychiatry Research (2015), http://dx.doi.org/10.1016/j.psychres.2014.12.066i
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Table 1 Characteristics of caregivers, of care recipients, and of the caregiving situation (n¼ 504). Characteristics
n (%)
Age (years)a Range Gender Female Male Marital status Without partner With partner Educational level Without education Primary education Secondary or higher education Area of residence Rural Urban Employment status Employed Unemployed Monthly income (Euros) o 1000 1000–2000 42000 Age of the care recipienta Range Gender of the care recipient Female Male Degree of dependence of the care recipienta Disorder that determined the dependence of the care recipient Cancer Diseases of the musculoskeletal system and connective tissue, cardiovascular and respiratory diseasesb Chromosomal abnormalities, congenital and perinatal disorders Mental illness, neurological diseases and brain damage Dementia Care recipient–caregiver relationship Spouse/partner Son/daughter Parent Other relativec Duration of care (years)a Hours per day of carea
55.1 (10.8) 21–86 448 (88.9) 56 (11.1) 121 (24.0) 383 (76.0) 128 (25.4) 289 (57.3) 87 (17.3) 262 (52.0) 242 (48.0) 83 (16.5) 421 (83.5) 137 (27.2) 295 (58.5) 72 (14.3) 74.1 (23.7) 2–105 363 (72.0) 141 (28.0) 16.5 (21.7) 13 (2.6) 91 (18.1) 54 (10.7) 141 (27.9) 205 (40.7) 47 (9.3) 90 (17.9) 219 (43.4) 148 (29.4) 11.6 (9.3) 16.5 (3.5)
a
Mean (standard deviation). Musculoskeletal, connective tissue, and cardiovascular and respiratory disorders include 75 people with musculoskeletal and connective tissue disorders (14.9%) and 16 people with cardiovascular and respiratory disorders (3.2%). c Other relative includes 33 siblings (6.5%), 27 aunts/uncles (5.4%), 14 grandparents (2.8%), five cousins and nieces/ nephews (1.0%), 55 parents-in-law (10.9%) and 14 other in-law relations (2.8%). b
Table 2 Clinical symptoms of major depressive episodes (n¼ 45). Symptom
Yes
1. Depressed mood 2. Markedly diminished interest or pleasure 3. Significant weight loss or gain 4. Insomnia or hypersomnia 5. Psychomotor agitation or retardation 6. Fatigue or loss of energy 7. Feelings of worthlessness or excessive or inappropriate guilt 8. Diminished ability to think or concentrate or indecisiveness 9. Recurrent thoughts of death, or a suicide attempt or a specific plan for committing suicide
age was a predictor of caregiver depression (Jácome et al., 2014). However, when comparing our results with those of this study it should be noted that, unlike ours, the other study cited used scales to determine depression. Our results, however, disagree with the findings of Blanco et al. (2014), in which younger caregivers had a higher risk of developing depression, although in this study the
No
n
%
n
%
38 34 36 42 35 32 9 41 35
84.4 75.6 80.0 93.3 77.8 71.1 20.0 91.1 77.8
7 11 9 3 10 13 36 4 10
15.6 24.4 20.0 6.7 22.2 28.9 80.0 8.9 22.2
risk was found among those caregivers who already had elevated depressive symptoms and emotional distress. We found that the risk of experiencing an MDE was also significantly greater if the caregiver was unemployed (adjusted OR¼3.43; 95% CI: 1.02–11.48). This concurs with the results of previous studies of the general adult population, which report that housework and caregiving were
Please cite this article as: Torres, Á., et al., Prevalence of major depressive episodes in non-professional caregivers. Psychiatry Research (2015), http://dx.doi.org/10.1016/j.psychres.2014.12.066i
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Table 3 Correlates of major depressive episodes with caregiver, care recipient, and care situation characteristics. Variable
Age (years) r 55 455 Gender Women Men Marital status Single With partner Educational level Without education Primary education Secondary or higher education Residence area Rural Urban Employment status Employed Unemployed Monthly income (Euros) o 1000 1000–2000 42000 Age of the care recipient r 83 483 Gender of the care recipient Female Male Degree of dependence of the care recipientc r 20 420 Disorder that determined the dependence of the care recipient Cancer Musculoskeletal, connective tissue, cardiovascular and respiratory disorders Chromosomal abnormalities, congenital and perinatal disorders Mental illness, neurological diseases and brain damage Dementia Care recipient–caregiver relationship Spouse/partner Son/daughter Parent Other relative Duration of care (years) r8 48 Hours per day of care r 12 412
Depressed (n ¼45) Non-depressed (n ¼459)
ORa (95% CIb)
Adjusted ORa (95% CIb)
30 (66.7) 15 (33.3)
223 (48.6) 236 (51.4)
1 [Reference] 1 [Reference] 0.47 (0.25–0.90)n 1.96 (1.02–3.75)n
44 (97.8) 1 (2.2)
404 (88.0) 55 (12.0)
1 [Reference] 1 [Reference] 5.99 (0.81–44.35) 0.19 (0.03–1.44)
8 (17.8) 37 (82.2)
113 (24.6) 346 (75.4)
1 [Reference] 1.51 (0.68–3.34)
1 [Reference] 1.46 (0.66–3.25)
12 (26.7) 27 (60.0) 6 (13.3)
116 (25.3) 262 (57.1) 81 (17.6)
1 [Reference] 1.0 (0.49–2.04) 0.72 (0.26–1.99)
1 [Reference] 0.66 (0.30–1.46) 0.48 (0.16–1.45)
23 (51.1) 22 (48.9)
239 (52.1) 220 (47.9)
1 [Reference] 1.04 (0.56–1.92)
1 [Reference] 1.12 (0.60–2.09)
3 (6.7) 42 (93.3)
80 (17.4) 379 (82.6)
1 [Reference] 2.96 (0.89–9.77)
1 [Reference] 3.43 (1.02–11.48)n
10 (22.2) 29 (64.4) 6 (13.3)
127 (27.7) 266 (57.9) 66 (14.4)
1 [Reference] 1.39 (0.66–2.93) 0.08 (0.40–3.32)
1 [Reference] 1.18 (0.55–2.52) 1.03 (0.36–2.99)
24 (53.3) 21 (46.7)
230 (50.1) 126 (27.5)
1 [Reference] 0.88 (0.48–1.62)
1 [Reference] 0.85 (0.46–1.58)
30 (66.7) 15 (33.3)
333 (72.5) 126 (27.5)
1 [Reference] 1.32 (0.69–2.54)
1 [Reference] 1.30 (0.65–2.62)
31 (68.9) 14 (31.1)
331 (72.1) 128 (27.9)
1 [Reference] 1.17 (0.60–2.27)
1 [Reference] 1.15 (0.59–2.25)
3 6 7 11 18
(6.7) (13.3) (15.6) (24.4) (40.0)
10 85 47 130 187
(2.2) (18.5) (10.2) (28.4) (40.7)
1 [Reference] 0.24 (0.05–1.09) 0.50 (0.11–2.26) 0.28 (0.07–1.18) 0.32 (0.08–1.27)
1 [Reference] 0.24 (0.05–1.14) 0.47 (0.10–2.30) 0.28 (0.07–1.19) 0.33 (0.08–1.31)
4 10 21 10
(8.9) (22.2) (46.7) (22.2)
43 80 198 138
(9.4) (17.4) (43.1) (30.1)
1 [Reference] 1.34 (0.40–4.54) 1.14 (0.37–3.49) 0.78 (0.23–2.61)
1 [Reference] 0.87 (0.25–3.09) 0.79 (0.25–2.51) 0.47 (0.13–1.64)
24 (53.3) 21 (46.7)
222 (48.4) 237 (51.6)
1 [Reference] 0.82 (0.44–1.51)
1 [Reference] 0.90 (0.48–1.67)
4 (8.9) 41 (91.1)
69 (15.0) 390 (85.0)
1 [Reference] 1.81 (0.63–5.22)
1 [Reference] 2.12 (0.72–6.22)
Notes: All the variables were adjusted for age and gender, except age, which was adjusted for gender, and gender, which was adjusted for age. a
OR ¼ Odds ratio. 95% CI ¼ 95% confidence interval. c Degree of dependence of the care recipient (determined by BI) r 20¼ total dependence. n po 0.05. b
possible independent risk factors for the onset of major depression (Kaelber et al., 1995). Given the significance level and the confidence interval found, these associations should be interpreted with caution; in fact, this variable has been analyzed for only a small number of subjects. Other characteristics of caregivers, care recipients and care situations did not appear to be significant predictors of MDEs when examined in a multivariate framework. These results disagree with previous studies that found depression in NCs to be associated with female gender (e.g., Schulz and Martire, 2004). But since in our sample only 2.2% of depressed caregivers were men, this result should be interpreted with caution. In contrast, in terms of disorders our findings are in line with previous evidence finding no differences between caregivers of people with dementia and people without dementia in terms of levels of depression experienced (Crespo et al.,
2005). Here again, however, the differences in the instruments used to establish depression (diagnostic interview versus self-reported symptom scale) limit the comparison. No differences were found in the prevalence of the most frequent depressive symptoms (insomnia or hypersomnia, diminished ability to think or concentrate, and depressed mood) as a function of age of the caregiver, or age or disorder of the care recipient, or time that caregiver spent caring for their family member, suggesting that the appearance of depression is not related to these variables. However, these results have not been adjusted and should be treated with caution. Although the sample in the current study was obtained from a specific region of Spain, our data are in agreement with the general picture of non-professional caregiving in Spain outlined in the 2008 Survey on Disability, Personal Autonomy, and Dependency Situations (Instituto Nacional de Estadística, 2008). The majority of NCs
Please cite this article as: Torres, Á., et al., Prevalence of major depressive episodes in non-professional caregivers. Psychiatry Research (2015), http://dx.doi.org/10.1016/j.psychres.2014.12.066i
Á. Torres et al. / Psychiatry Research ∎ (∎∎∎∎) ∎∎∎–∎∎∎
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were women, with an average age of 55 years, married or living with a partner; they had low educational and economic levels, were unemployed, and were taking care of a parent or another family member, the majority of whom were females. In addition informal caregiving is generally a time-intensive and long-term activity. The caregivers in our study spent an average of 16.5 h per day and had provided care for an average of 11.6 years. There are several strengths of this study. Firstly, it was conducted with direct interviews, which allows for correct implementation of research instruments and avoids bias due to subjects failing to answer or providing incomplete answers (Weinberger et al., 1996). In addition, it uses a randomly selected representative sample of caregivers for persons who suffer from all types of disorders that result in dependence, and the cases of MDEs were identified by clinically trained interviewers with the aid of the Structured Clinical Interview for DSM-IV Axis I Disorders. This study has important implications for policy, clinical practice, and service delivery. Documentation of the prevalence of depression in the NC population is critical for governments, medical centers, and social services, since it provides the information required to estimate the need for services and appropriate preventive/treatment interventions to support this population. Given the high prevalence of depression this study found among NCs compared with the general population, and given that major depressive disorders significantly impair functioning and may compromise NCs' ability to care for others, clinicians should be attentive to its assessment and diagnosis, especially among older and unemployed caregivers. It is possible that health professionals consider depressive symptoms to be a normal reaction to the very stressful situation of taking care of someone with a long-term illness or disability, but this leads to a failure to detect, prevent, and treat depressive disorders among NCs. Furthermore, we must not forget that depression in caregivers is documented to be associated with a low quality of life, premature institutionalization, and mistreatment of the care recipient (Karlawish et al., 2001). This study has some limitations. Firstly, it was cross-sectional and only correlates could be assessed. A cross-sectional design is not able to capture the differences in NCs' depression in response to time or changes of the care recipient's clinical condition (Grunfeld et al., 2004). In addition, we were unable to assess psychiatric comorbidity in the diagnostic interview, which creates some uncertainty about the strength of the correlations and the specificity of the correlates to MDEs as opposed to psychiatric disorders in general. It would be interesting to use self-report scales that could add complementary information on the severity of depressive symptoms, although it is important to keep in mind that the aim of this study was to determine the prevalence of the diagnosis of MDE, and we used today's goldstandard method to establish a diagnosis. Future studies could include other instruments and compare objective and subjective instruments in order to complement this information and take into account certain important subjective perceptions of caregivers when considering the treatment options they need. Finally, we did not assess the quality of care provided by the NCs, so we cannot conclude that the care given by NCs with current major depression is of poorer quality than those without depression, as Williamson and Shaffer (2001) point out, although this is certainly plausible. In conclusion, our finding that MDEs are highly prevalent in NCs of dependent patients, especially NCs who are older and unemployed, suggests that caregiver monitoring to ensure their mental health and well-being should be an important goal of health care policy.
Contributions Angela Torres conceived of, designed, coordinated, and supervised the study, and participated in the production of the paper.
Vanessa Blanco participated in the study design and the production of the paper. Fernando L. Vázquez conceived of, designed, coordinated, and supervised the study, and participated in the production of the paper. Olga Díaz, Patricia Otero, and Elisabet Hermida participated in the study design and gave important suggestions incorporated into the production of the paper. Elisabet Hermida participated in the data analysis. All authors read and revised the manuscript and approved the final version.
Conflict of interest On behalf of all authors, the corresponding author states that there is no conflict of interest.
Acknowledgments This study was supported by Grant 2007/PN017 from the Ministry of Labor and Social Affairs of Spain. References Arai, Y., Kumamoto, K., Mizuno, Y., Washio, M., 2014. Depression among family caregivers of community-dwelling older people who used services under the Long Term Care Insurance program: a large-scale population-based study in Japan. Aging & Mental Health 18, 81–91. Ayuso-Mateos, J.L., Vázquez-Barquero, J.L., Dowrick, C., Lehtinen, V., Dalgard, O.S., Casey, P., Wilkinson, C., Lasa, L., Page, H., Dunn, G., Wilkinson, G., 2001. Depressive disorders in Europe: prevalence figures from the ODIN study. British Journal of Psychiatry 179, 308–316. Baztán, J.J., Pérez del Molino, J., Alarcón, T., San Cristobal, E., Izquierdo, G., Manzarbeitia, J., 1993. Índice de Barthel: Instrumento válido para la valoración funcional de pacientes con enfermedad cerebrovascular [The Barthel Index: a valid instrument for the functional assesssment of patients with cerebrovascular disease]. Revista Española de Geriatría y Gerontología 28, 32–40. Blanco, V., Rhode, P., Vázquez, F.L., Torres, A., 2014. Identification of caregivers at greatest risk of major depression in two prevention studies. Psychotherapy Research 24, 578–593. Bookwala, J., Yee, J.L., Schulz, R., 2000. Caregiving and detrimental mental and physical health outcomes. In: Williamson, G.M., Shaffer, D.R., Parmelee, P.A. (Eds.), Physical Illness and Depression in Older Adults: A Handbook of Theory, Research, and Practice. Kluwer Academic Publishers, Dordrecht, The Netherlands, pp. 91–131. Cid-Ruzafa, J., Damián-Moreno, J., 1997. Valoración de la discapacidad física: El Índice de Barthel [Assessment of physical disability: the Barthel Index]. Revista Española de Salud Pública 71, 127–137. Cochrane, J.J., Goering, P.N., Rogers, J.M., 1997. The mental health of informal caregivers in Ontario: an epidemiological survey. American Journal of Public Health 87, 2002–2007. Covinsky, K.E., Newcomer, R., Fox, P., Wood, J., Sands, L., Dane, K., Yaffe, K., 2003. Patient and caregiver characteristics associated with depression in caregivers of patients with dementia. Journal of General Internal Medicine 18, 1006–1014. Creese, J., Bédard, M., Brazil, K., Chambers, L., 2008. Sleep disturbances in spousal caregivers of individuals with Alzheimer's disease. International Psychogeriatrics 20, 149–161. Crespo, M., López, J., Zarit, S.H., 2005. Depression and anxiety in primary caregivers: a comparative study of caregivers of demented and nondemented older persons. International Journal of Geriatric Psychiatry 20, 591–592. Cuijpers, P., 2005. Depressive disorders in caregivers of dementia patients: a systematic review. Aging & Mental Health 9, 325–330. Dura, J.R., Stukenberg, K.W., Kiecolt-Glaser, J.K., 1991. Anxiety and depressive disorders in adult children caring for demented patients. Psychology and Aging 6, 467–473. Lairizgoitia, A., 2005. Services for supporting family carers of elderly people in Europe: characteristics, coverage and usage. National background report for Spain. EUROFAMCARE, Hamburg. First, M.B., Spitzer, R.L., Gibbon, M., Williams, J.B.W., 1999. Entrevista Clínica Estructurada para los Trastornos del Eje I del DSM-IV – Versión Clínica (SCIDCV) [Structured Clinical Interview for DSM-IV Axis I Disorders-Clinician Version (SCID-CV)]. Masson, Barcelona. First, M.B., Spitzer, R.L., Gibbon, M., Williams, J.B.W., 2000. User's Guide for the Structured Clinical Interview for DSM-IV Axis I Disorders-Clinician Version (SCID-CV). American Psychiatric Press, Washington, DC. Gabilondo, A., Rojas-Farreras, S., Vilagut, G., Haro, J.M., Fernández, A., Pinto-Meza, A., Alonso, J., 2010. Epidemiology of major depressive episode in a southern European country: results from the ESEMeD-Spain project. Journal of Affective Disorders 120, 76–85.
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Psychiatry Research journal homepage: www.elsevier.com/locate/psychres
Prevalence of major depressive episodes in non-professional caregivers Ángela Torres a,n, Vanessa Blanco b, Fernando L. Vázquez c, Olga Díaz c, Patricia Otero b, Elisabet Hermida b a
Department of Psychiatry, Radiology, and Public Health, University of Santiago de Compostela, Santiago de Compostela, Spain Unit of Depressive Disorders, University of Santiago de Compostela, Santiago de Compostela, Spain c Department of Clinical Psychology and Psychobiology, University of Santiago de Compostela, Santiago de Compostela, Spain b
art ic l e i nf o
a b s t r a c t
Article history: Received 2 June 2014 Received in revised form 18 December 2014 Accepted 19 December 2014
Despite research demonstrating the psychological burden associated with caregiving, there is limited information regarding the real rates of clinical depression among non-professional caregivers (NCs) of dependent patients. The goals of the current study are (a) to report the prevalence of major depressive episodes (MDEs) and the frequency of depressive symptoms in NCs from Galicia (Spain) and (b) to examine the relationship between MDEs and characteristics of caregivers, care recipients, and the care situation. A sample of 504 NCs providing care to persons with all kinds of disorders that result in dependency was randomly selected, and the occurrence of MDEs was assessed by trained interviewers who applied the Structured Clinical Interview for DSM-IV Axis I Disorders-Clinician Version (SCID-CV). Overall, 8.9% of NCs met the criteria for a current MDE. Sleep problems, diminished ability to think or concentrate, and depressed mood were the clinical depressive symptoms most frequently reported. MDEs were significantly more common among NCs older than 55 years old (odds ratio [OR] ¼1.96; 95% confidence interval [CI]: 1.02–3.75) and those who were unemployed (OR ¼ 3.43; 95% CI 1.02–11.48). The findings highlight the magnitude of major depression in this population. & 2015 Published by Elsevier Ireland Ltd.
Keywords: Caregivers Epidemiology Depression Major depressive episode Predictors
1. Introduction Improvements in hygiene and nutrition, medical advances, and social achievements have led to a decrease in mortality and an increase in life expectancy in many countries, especially more developed ones. In parallel, there has also been a notable increase in the number of people in situations of dependency, a phenomenon that will be increasingly noticeable in years to come. In fact, it is estimated that by 2040 the number of people in situations of dependency will increase by an average of 31% in developed countries, with expected increases of up to 20% in Europe and Japan and up to 60% in North America and Australia (Harwood et al., 2004). In European countries, family members—predominantly women —provide 80% of long-term care received by people in situations of dependency (Hoffmann and Rodrigues, 2010). People who assume responsibility for providing care in a non-professional, unpaid manner, based on family or affective ties, are known as nonprofessional caregivers (NCs) (Thompson et al., 2007). Care provided by NCs has clear and major implications for health and social policies; it decreases the usage of formal aid resources and results in a consequent decrease in public spending. However, the amount of
n
Corresponding author. Tel.: þ 34 881812435; fax: þ34 881812430. E-mail address: [email protected] (Á. Torres).
time dedicated to providing care for a dependent person may have consequences on the emotional state of NCs (Covinsky et al., 2003; Arai et al., 2014). Studies consistently report that depressive symptoms and depression are frequent among non-professional caregivers. In a systematic review of depressive disorders in caregivers of dementia patients (Cuijpers, 2005), the risk of having a depressive disorder was 2.8 to 38.7 times higher in NCs than in controls. Similarly, a prospect cohort study (Joling et al., 2010) reported that spouses of patients with dementia had a fourfold risk of being diagnosed with depression and a twofold risk for the prescription of antidepressants when compared with matched controls. NC samples display higher levels of depression than non-caregivers (Pinquart and Sörensen, 2003). It was found that between 40% and 70% of caregivers exhibit clinically significant symptoms of depression, with approximately one-quarter to one-half of these caregivers meeting the diagnostic criteria for major depression (Gallagher-Thompson et al., 1989; Redinbaugh et al., 1995; Schulz et al., 1995; Bookwala et al., 2000; Zarit, 2006). Despite caregivers' justifiable vulnerability to depression, its phenomenology has been insufficiently investigated in this population. Furthermore, generalizability of previous prevalence studies of depression is limited due to the use of convenience samples (e.g., Gallagher-Thompson et al., 1989; Dura et al., 1991) and the focus on caregivers of people with dementia (e.g., Dura et al., 1991; Joling et al., 2010). Moreover, the prevalence of depression has
http://dx.doi.org/10.1016/j.psychres.2014.12.066 0165-1781/& 2015 Published by Elsevier Ireland Ltd.
Please cite this article as: Torres, Á., et al., Prevalence of major depressive episodes in non-professional caregivers. Psychiatry Research (2015), http://dx.doi.org/10.1016/j.psychres.2014.12.066i
Á. Torres et al. / Psychiatry Research ∎ (∎∎∎∎) ∎∎∎–∎∎∎
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been determined using self-report symptom scales (e.g., Mahoney et al., 2005) instead of using explicit diagnostic criteria, such as those in the various editions of the DSM or the International Classification of Diseases. Although such self-report measures provide important information about the caregiver's degree of depressive symptoms, they do not yield sufficient information to make a clinically sensitive and specific systematized diagnosis of depression disorder using standardized diagnostic criteria. As a consequence, the rate of diagnosable depressive disorders among NCs has not definitively been determined. Since depressive disorders impair daily functioning (Judd et al., 2000)—and in the case of caregivers may also affect the quality of care they provide to their loved one (Williamson and Shaffer, 2001)—we must have adequate knowledge of the prevalence of this disorder among NCs in order to estimate the need for services and the development of specific treatments tailored to the needs of this population. The aims of this study were to examine the prevalence of major depressive episodes (MDEs) according to DSM-IV Axis I diagnostic criteria and related correlates in a representative random community sample that was drawn from Spanish NCs providing care to persons with all types of disorders that result in dependency.
2. Methods
The Barthel Index (BI) (Mahoney and Barthel, 1965; Spanish version of Baztán et al. (1993)) was used to assess the functional independence of the care recipients in terms of in self care and mobility. The BI assesses a person's ability to independently perform 10 basic activities of daily living (ADLs), such as eating, bathing, dressing, grooming, bowel movements, urination, toileting, transfer from chair/bed, walking, and negotiating stairs. A score (0, 5, 10, 15) is assigned depending on the time spent in performing each activity and the need for help to perform it, yielding a final score ranging from 0 (completely dependent) to 100 (completely independent). Thus, the higher the score, the greater the autonomy. The Spanish version of the BI has adequate inter-observer (47–1) and intraobserver (84–97) reliability and good internal consistency (0.86–0.92) (CidRuzafa and Damián-Moreno, 1997).
2.2.2. MDE diagnosis The Spanish version of the Structured Clinical Interview for DSM-IV Axis IClinician Version [SCID-CV] (First et al., 1999) was used to help the evaluators determine clinical diagnoses. The SCID-CV is a structured interview designed to provide information on the most common DSM-IV Axis I disorders in clinical settings. It comprises six modules, A–F, that are respectively targeted at mood episodes, psychotic symptoms, psychotic disorders, mood disorders, substance use disorders, and anxiety and other disorders. Each item corresponds to a diagnostic criterion and is rated “ þ” or “ ” according to whether, in the interviewer's judgment, it is true or false (or at least doubtful) that the corresponding diagnostic criterion is satisfied. SCID-CV ratings are judgments about the diagnostic criteria and not necessarily the patient's answers to questions. It is usually administered in a single session that requires 45–90 min. This diagnostic instrument is widely used and has been determined to be reliable, with K values of 0.70–1.00 (First et al., 2000). The disorder assessed in this study was the presence of MDE, corresponding to module A of the SCID-CV.
2.1. Subjects 2.3. Procedure We used a cross-sectional design, carrying out the study between November 4, 2010, and May 27, 2011. The study sample was randomly extracted from among 18,410 NCs listed in the official register prepared by the Dependency Technical Coordination Unit of the Ministry of Labor and Welfare of the Autonomous Community of Galicia. Galicia is a region in the northwest of Spain with an area of 29,434 km2 and a population of 2,730,337. This register was created on the basis of Law 39/2006 of December 14, the Promotion of Personal Autonomy and Care for People in Situations of Dependency Act (Ley 39/2006, 2006) in order to regulate the basic conditions of equality and care for people in situations of dependency. To be eligible for the study: (a) caregivers had to be a primary caregiver for a family member in a state of dependency (i.e., the person on who rests the responsibility of caring for a dependent family member (Lairizgoitia, 2005)); (b) the care recipient must have their status of dependence recognized by the official organization; (c) the caregiver had to live at home with the person they provided care for; and (d) the person in a situation of dependency must not have a terminal prognosis shorter than 6 months. Those caregivers who did not consent were excluded from the study. The sample size calculation was estimated on the basis of the prevalence of depression ( E6%) and the loss of subjects ( E10%) found in a previous pilot study. This prevalence rate is higher than that found in the Spanish general population, ranging from 2.6% for 1-month prevalence (Ayuso-Mateos et al., 2001) to 4% for 12months prevalence (Gabilondo et al., 2010). Based on the findings of the pilot study, a sample of 486 participants was required in order to achieve accuracy of 7 2 and α ¼ 0.05. We initially contacted 540 subjects to counteract subject loss. The response rate was 93.3%. Thirty-six caregivers declined to participate, leaving a final simple of 504 participants (88.9% women) with a mean age of 55.1 years (S.D.¼ 10.8). These NCs cared for their family members (43.4% of whom were their fathers) who suffered from various diseases (40.7% dementia) and had a mean age of 74.1 years (S.D. ¼ 23.7). The selected caregivers were personally contacted by mail and telephone and were invited to participate in the study after being informed of its nature, objectives, risks, and benefits. Participation was voluntary, and no incentives were offered. The study was approved by the ethics committee of the University of Santiago de Compostela and was carried out in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments.
2.2. Materials 2.2.1. Characteristics of caregivers, care recipients and the caregiving situation An ad hoc questionnaire was employed to collect data on participants' age, gender, marital status, educational level, area of residence, employment status, and monthly income. Information on age, gender, and the disorder that resulted in dependence was collected for the persons in a situation of dependency. With regard to the caregiving situation, information about the care recipient's relationship to the caregiver and the duration (years of care) and intensity (hours per day of care) of care was also assessed.
A research protocol was drawn up detailing the study objectives, design and setting, participants (target population, accessible population, inclusion criteria, exclusion criteria, sampling, and recruitment), measures (predictor variables and outcome variables), bias (non-response, recall bias, and selection bias), data analysis strategy, quality control, data management, schedule, and ethical issues. A pilot study was then conducted, which served as a simulation of the planned study; the goal was to evaluate project feasibility and interviewer competence. The pilot study involved 47 caregivers out of the 52 who had previously been selected at random; four did not give their informed consent, and in one case care recipient died. The assessments were carried out in September 2010 by four psychologists with several years of experience in the evaluation and diagnosis of mood disorders (4–15 years) who had received specific training to evaluate the participants in this study. They received 1 full week of training prior to the pilot test, including the SCID-CV standard training components, and were closely monitored by two clinicians with an average of 20 years of experience in the evaluation and diagnosis of mental health disorders who belonged to both the Department of Psychiatry, Radiology and Public Health and the Department of Clinical Psychology and Psychobiology of the University of Santiago de Compostela. All these interviews were recorded to assess the evaluators' performance and to provide them with feedback. In the pilot test were detected three caregivers who experienced a major depressive episode. Productivity was four interviews per work day, and the average length of interviews was 35–40 min. Subsequently, the NCs were personally contacted and invited to participate in the cross-sectional study. Each participant was interviewed face to face by the above-mentioned trained interviewers at a location near their home provided by social community services. The participants first answered questions about the sociodemographic characteristics of caregivers, care recipients, and the care situation as described above; the functional status of the dependent person was also assessed through the BI (see Section 2). Then, the presence of MDEs was identified by the interviewers with the aid of the SCID-CV. The duration of each interview was similar to that previously estimated in the pilot study ( E40 min). One of the clinical experts supervised interviewers weekly during the study. In addition, a random sample of 10% of interviews were recorded and then analyzed by another expert who supervised the training. To minimize subject dropout, data collection strategies for this type of study were followed, such as planning a systematic series of repeated contact tests, reminders of the interview date, avoiding invasive or annoying procedures for information collection, and presenting the study to the participants in an appealing fashion (Hulley et al., 2013).
2.4. Data analysis Data are expressed as frequencies and percentages for categorical variables or means and standard deviations for continuous variables. The absence of significant relevant differences between respondent and non-respondents NCs was verified
Please cite this article as: Torres, Á., et al., Prevalence of major depressive episodes in non-professional caregivers. Psychiatry Research (2015), http://dx.doi.org/10.1016/j.psychres.2014.12.066i
Á. Torres et al. / Psychiatry Research ∎ (∎∎∎∎) ∎∎∎–∎∎∎ using the chi-square test or Fisher's exact test for categorical variables, and unmatched Student's t-test for continuous variables. Multiple logistic regression analyses were performed to analyze associations among depression and the variables included in the study. For statistical or clinical reasons, some of these variables were redefined as follows: based on distribution, the age variable was classified as r 55 years or 455 years, age of the care recipient as r 83 years or 4 83 years, and duration of care as r8 years or 48 years; to distinguish care during daytime hours from care exceeding those hours, hours per day of care was classified as r12 h or 412 h per day, and to distinguish total dependence from other levels of dependency, dependence status was classified as BI r 20 or BI 420. All logistic regression analyses were performed with and without adjustment for age and gender of the caregiver. As an exploratory method, associations among the three most frequent depressive symptoms and other study variables were analyzed when statistically possible. Specifically, multiple logistic regression analyses were also performed to analyze associations among insomnia or hypersomnia, diminished ability to think or concentrate, and depressed mood (each split into two categories as 0 ¼absent and 1¼ present) and the variables for age of the caregiver, age of the care recipient, care recipient's disorder (redefined as dementia versus other conditions) and duration of care. The results are reported as odds ratios (ORs) with 95% confidence intervals (CIs). All statistical analyses were performed using PASW Statistics 18 software.
3. Results 3.1. Characteristics of caregivers, care recipients, and the caregiving situation As summarized in Table 1, the mean age of the sample was 55.1 years (S.D.¼10.8), ranging from 21 to 86 years. The majority of NCs were females (88.9%), and married or living with a partner (76.0%). More than a half had a primary level of education (57.3%) and were living in a rural area (52.0%), and 16.5% of NCs were employed while they were providing care. More than half (58.5%) of the NCs reported that their monthly income was between 1000 and 2000 Euros. Care recipients had a mean age of 74.1 years (S.D.¼23.7), ranging from 2 to 105, and were predominantly female (72.0%). They had a mean BI score of 16.5 (S.D.¼21.7), which is indicative of a high level of dependence; 40.7% had dementia. NCs mostly provided care to their parents (43.5%) for a mean duration of 11.6 years (S.D. ¼9.3) and a mean intensity of 16.5 h per day (S.D. ¼ 3.5). No statistically significant differences were found between respondent NCs (n ¼504) and non-respondents NCs (n ¼36) on those variables for which information was available. Specifically, there were no differences with respect to age (t (40.35) ¼ 1.28, p ¼0.207), gender (χ2 (1, n ¼540) ¼0.26, p¼ 0.586), area of residence (χ2 (1, n ¼540) ¼3.18, p ¼0.084), disorder of the care recipient (χ2 (4, n ¼540) ¼0.74, p ¼0.834) and relationship with the care recipient (χ2 (3, n ¼540) ¼0.81, p ¼0.826). 3.2. MDE prevalence Caregivers reported a mean of 2.2 depressive symptoms (S.D.¼ 2.2). According to the SCID-CV results, 8.9% (n¼45) of the NCs were currently experiencing a DSM-IV Axis I MDE. The frequency of depressive symptoms is shown in Table 2. The most frequent symptoms reported by those NCs experiencing a current MDE were insomnia or hypersomnia nearly every day (93.3%), diminished ability to think or concentrate (91.1%), and depressed mood most of the day (84.4%). Less frequently reported symptom was feelings of worthlessness and excessive or inappropriate guilt nearly every day. 3.3. Correlates of MDEs Table 3 shows the results of the multivariable logistic regression analyses on the correlates of MDE. Older age (Wald χ2 (1)¼ 4.09; adjusted OR ¼1.96; 95% CI: 1.02–3.75; p ¼0.043) and unemployment status (Wald χ2 (1)¼ 4.00; adjusted OR ¼3.43; 95%
3
CI: 1.02–11.48; p ¼0.046) were significantly related to depression in NCs. There were no significant differences between depressed and non-depressed NCs with regard to gender, marital status, educational level, area of residence, monthly income, age of the care recipient, gender, degree of dependence, disorder of the care recipient, care recipient's relationship to the NC, duration of care, or intensity of care. Among the NCs who experienced a MDE, the most common depressive symptoms (insomnia or hypersomnia, diminished ability to think or concentrate, or depressed mood) had no significant relationship with either age of the caregiver, nor the age or disorder of the care recipient or time of care.
4. Discussion The main purpose of this study was to determine the prevalence of DSM-IV Axis I MDEs in a representative sample of NCs. The prevalence of current MDE in the present study (8.9%) was twofold higher than the 4% estimated 12-months prevalence of major depression in the general population (Gabilondo et al., 2010), and also up to twofold higher than the 12-months prevalence rates of major depression in other western European countries (Paykel et al., 2005). Compared with other estimates in caregiver samples, the prevalence obtained in this study was lower than that described in previous reports, where 25–50% of caregivers met the criteria for an MDE (Gallagher-Thompson et al., 1989; Redinbaugh et al., 1995; Bookwala et al., 2000; Zarit, 2006). In a systematic review of studies of caregivers of dementia patients, 22.3% had a depressive disorder (Cuijpers, 2005); this rate is threefold higher than the observed in the present study. One possible explanation for this is that these studies were conducted using convenience samples and did not use standardized diagnostic clinical interviews to establish the diagnosis of depression among caregivers. In contrast, our prevalence is higher than that obtained by Cochrane et al. (1997), who reported that 6.3% of caregivers had affective disorders, and that described by Joling et al. (2010), who found that 2.7% of the spouses of patients with dementia met the criteria for a depressive disorder and 6.9% had new cases of depression by the 6-year follow-up. The discrepancy between our results and those of other researchers may be due to bias in these studies' sample, since in the study by Cochrane et al. (1997) caregivers aged 65 or older were not evaluated, and the study by Joling et al. (2010) focused on the medical records of spouses of persons with dementia, which leaves out those caregivers who do not go to the doctor and those with familial ties other than spousal and conditions other than dementia. Regarding the frequency of depressive symptoms among NCs with a current MDE, 93.3% suffered from insomnia or hypersomnia as a clinical symptom, 91.1% described a diminished ability to think or concentrate, and 84.4% reported depressed mood. The most prevalent symptoms of depression reported in the general population are insomnia, fatigue, and recurrent thoughts of death (Judd et al., 1994). Sleep problems are commonly reported among NCs with and without major depression and are presumed to be linked to the nighttime behaviors of the care recipient (Creese et al., 2008). However, our rates, and particularly the rate of sleep disturbances, were higher than those reported in previous studies of NCs with and without major depression (Yokoyama et al., 1997; McCurry et al., 2007). The second aim of this work was to examine the relationship between current MDEs and variables for the caregiver, the care recipient, and the care situation. We found that age and employment status were related to depression in this sample. Compared to participants r55 years old, those who were 56 or older had approximately a twofold higher risk of depression. This result is consistent with those of a previous study which found that older
Please cite this article as: Torres, Á., et al., Prevalence of major depressive episodes in non-professional caregivers. Psychiatry Research (2015), http://dx.doi.org/10.1016/j.psychres.2014.12.066i
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Table 1 Characteristics of caregivers, of care recipients, and of the caregiving situation (n¼ 504). Characteristics
n (%)
Age (years)a Range Gender Female Male Marital status Without partner With partner Educational level Without education Primary education Secondary or higher education Area of residence Rural Urban Employment status Employed Unemployed Monthly income (Euros) o 1000 1000–2000 42000 Age of the care recipienta Range Gender of the care recipient Female Male Degree of dependence of the care recipienta Disorder that determined the dependence of the care recipient Cancer Diseases of the musculoskeletal system and connective tissue, cardiovascular and respiratory diseasesb Chromosomal abnormalities, congenital and perinatal disorders Mental illness, neurological diseases and brain damage Dementia Care recipient–caregiver relationship Spouse/partner Son/daughter Parent Other relativec Duration of care (years)a Hours per day of carea
55.1 (10.8) 21–86 448 (88.9) 56 (11.1) 121 (24.0) 383 (76.0) 128 (25.4) 289 (57.3) 87 (17.3) 262 (52.0) 242 (48.0) 83 (16.5) 421 (83.5) 137 (27.2) 295 (58.5) 72 (14.3) 74.1 (23.7) 2–105 363 (72.0) 141 (28.0) 16.5 (21.7) 13 (2.6) 91 (18.1) 54 (10.7) 141 (27.9) 205 (40.7) 47 (9.3) 90 (17.9) 219 (43.4) 148 (29.4) 11.6 (9.3) 16.5 (3.5)
a
Mean (standard deviation). Musculoskeletal, connective tissue, and cardiovascular and respiratory disorders include 75 people with musculoskeletal and connective tissue disorders (14.9%) and 16 people with cardiovascular and respiratory disorders (3.2%). c Other relative includes 33 siblings (6.5%), 27 aunts/uncles (5.4%), 14 grandparents (2.8%), five cousins and nieces/ nephews (1.0%), 55 parents-in-law (10.9%) and 14 other in-law relations (2.8%). b
Table 2 Clinical symptoms of major depressive episodes (n¼ 45). Symptom
Yes
1. Depressed mood 2. Markedly diminished interest or pleasure 3. Significant weight loss or gain 4. Insomnia or hypersomnia 5. Psychomotor agitation or retardation 6. Fatigue or loss of energy 7. Feelings of worthlessness or excessive or inappropriate guilt 8. Diminished ability to think or concentrate or indecisiveness 9. Recurrent thoughts of death, or a suicide attempt or a specific plan for committing suicide
age was a predictor of caregiver depression (Jácome et al., 2014). However, when comparing our results with those of this study it should be noted that, unlike ours, the other study cited used scales to determine depression. Our results, however, disagree with the findings of Blanco et al. (2014), in which younger caregivers had a higher risk of developing depression, although in this study the
No
n
%
n
%
38 34 36 42 35 32 9 41 35
84.4 75.6 80.0 93.3 77.8 71.1 20.0 91.1 77.8
7 11 9 3 10 13 36 4 10
15.6 24.4 20.0 6.7 22.2 28.9 80.0 8.9 22.2
risk was found among those caregivers who already had elevated depressive symptoms and emotional distress. We found that the risk of experiencing an MDE was also significantly greater if the caregiver was unemployed (adjusted OR¼3.43; 95% CI: 1.02–11.48). This concurs with the results of previous studies of the general adult population, which report that housework and caregiving were
Please cite this article as: Torres, Á., et al., Prevalence of major depressive episodes in non-professional caregivers. Psychiatry Research (2015), http://dx.doi.org/10.1016/j.psychres.2014.12.066i
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Table 3 Correlates of major depressive episodes with caregiver, care recipient, and care situation characteristics. Variable
Age (years) r 55 455 Gender Women Men Marital status Single With partner Educational level Without education Primary education Secondary or higher education Residence area Rural Urban Employment status Employed Unemployed Monthly income (Euros) o 1000 1000–2000 42000 Age of the care recipient r 83 483 Gender of the care recipient Female Male Degree of dependence of the care recipientc r 20 420 Disorder that determined the dependence of the care recipient Cancer Musculoskeletal, connective tissue, cardiovascular and respiratory disorders Chromosomal abnormalities, congenital and perinatal disorders Mental illness, neurological diseases and brain damage Dementia Care recipient–caregiver relationship Spouse/partner Son/daughter Parent Other relative Duration of care (years) r8 48 Hours per day of care r 12 412
Depressed (n ¼45) Non-depressed (n ¼459)
ORa (95% CIb)
Adjusted ORa (95% CIb)
30 (66.7) 15 (33.3)
223 (48.6) 236 (51.4)
1 [Reference] 1 [Reference] 0.47 (0.25–0.90)n 1.96 (1.02–3.75)n
44 (97.8) 1 (2.2)
404 (88.0) 55 (12.0)
1 [Reference] 1 [Reference] 5.99 (0.81–44.35) 0.19 (0.03–1.44)
8 (17.8) 37 (82.2)
113 (24.6) 346 (75.4)
1 [Reference] 1.51 (0.68–3.34)
1 [Reference] 1.46 (0.66–3.25)
12 (26.7) 27 (60.0) 6 (13.3)
116 (25.3) 262 (57.1) 81 (17.6)
1 [Reference] 1.0 (0.49–2.04) 0.72 (0.26–1.99)
1 [Reference] 0.66 (0.30–1.46) 0.48 (0.16–1.45)
23 (51.1) 22 (48.9)
239 (52.1) 220 (47.9)
1 [Reference] 1.04 (0.56–1.92)
1 [Reference] 1.12 (0.60–2.09)
3 (6.7) 42 (93.3)
80 (17.4) 379 (82.6)
1 [Reference] 2.96 (0.89–9.77)
1 [Reference] 3.43 (1.02–11.48)n
10 (22.2) 29 (64.4) 6 (13.3)
127 (27.7) 266 (57.9) 66 (14.4)
1 [Reference] 1.39 (0.66–2.93) 0.08 (0.40–3.32)
1 [Reference] 1.18 (0.55–2.52) 1.03 (0.36–2.99)
24 (53.3) 21 (46.7)
230 (50.1) 126 (27.5)
1 [Reference] 0.88 (0.48–1.62)
1 [Reference] 0.85 (0.46–1.58)
30 (66.7) 15 (33.3)
333 (72.5) 126 (27.5)
1 [Reference] 1.32 (0.69–2.54)
1 [Reference] 1.30 (0.65–2.62)
31 (68.9) 14 (31.1)
331 (72.1) 128 (27.9)
1 [Reference] 1.17 (0.60–2.27)
1 [Reference] 1.15 (0.59–2.25)
3 6 7 11 18
(6.7) (13.3) (15.6) (24.4) (40.0)
10 85 47 130 187
(2.2) (18.5) (10.2) (28.4) (40.7)
1 [Reference] 0.24 (0.05–1.09) 0.50 (0.11–2.26) 0.28 (0.07–1.18) 0.32 (0.08–1.27)
1 [Reference] 0.24 (0.05–1.14) 0.47 (0.10–2.30) 0.28 (0.07–1.19) 0.33 (0.08–1.31)
4 10 21 10
(8.9) (22.2) (46.7) (22.2)
43 80 198 138
(9.4) (17.4) (43.1) (30.1)
1 [Reference] 1.34 (0.40–4.54) 1.14 (0.37–3.49) 0.78 (0.23–2.61)
1 [Reference] 0.87 (0.25–3.09) 0.79 (0.25–2.51) 0.47 (0.13–1.64)
24 (53.3) 21 (46.7)
222 (48.4) 237 (51.6)
1 [Reference] 0.82 (0.44–1.51)
1 [Reference] 0.90 (0.48–1.67)
4 (8.9) 41 (91.1)
69 (15.0) 390 (85.0)
1 [Reference] 1.81 (0.63–5.22)
1 [Reference] 2.12 (0.72–6.22)
Notes: All the variables were adjusted for age and gender, except age, which was adjusted for gender, and gender, which was adjusted for age. a
OR ¼ Odds ratio. 95% CI ¼ 95% confidence interval. c Degree of dependence of the care recipient (determined by BI) r 20¼ total dependence. n po 0.05. b
possible independent risk factors for the onset of major depression (Kaelber et al., 1995). Given the significance level and the confidence interval found, these associations should be interpreted with caution; in fact, this variable has been analyzed for only a small number of subjects. Other characteristics of caregivers, care recipients and care situations did not appear to be significant predictors of MDEs when examined in a multivariate framework. These results disagree with previous studies that found depression in NCs to be associated with female gender (e.g., Schulz and Martire, 2004). But since in our sample only 2.2% of depressed caregivers were men, this result should be interpreted with caution. In contrast, in terms of disorders our findings are in line with previous evidence finding no differences between caregivers of people with dementia and people without dementia in terms of levels of depression experienced (Crespo et al.,
2005). Here again, however, the differences in the instruments used to establish depression (diagnostic interview versus self-reported symptom scale) limit the comparison. No differences were found in the prevalence of the most frequent depressive symptoms (insomnia or hypersomnia, diminished ability to think or concentrate, and depressed mood) as a function of age of the caregiver, or age or disorder of the care recipient, or time that caregiver spent caring for their family member, suggesting that the appearance of depression is not related to these variables. However, these results have not been adjusted and should be treated with caution. Although the sample in the current study was obtained from a specific region of Spain, our data are in agreement with the general picture of non-professional caregiving in Spain outlined in the 2008 Survey on Disability, Personal Autonomy, and Dependency Situations (Instituto Nacional de Estadística, 2008). The majority of NCs
Please cite this article as: Torres, Á., et al., Prevalence of major depressive episodes in non-professional caregivers. Psychiatry Research (2015), http://dx.doi.org/10.1016/j.psychres.2014.12.066i
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were women, with an average age of 55 years, married or living with a partner; they had low educational and economic levels, were unemployed, and were taking care of a parent or another family member, the majority of whom were females. In addition informal caregiving is generally a time-intensive and long-term activity. The caregivers in our study spent an average of 16.5 h per day and had provided care for an average of 11.6 years. There are several strengths of this study. Firstly, it was conducted with direct interviews, which allows for correct implementation of research instruments and avoids bias due to subjects failing to answer or providing incomplete answers (Weinberger et al., 1996). In addition, it uses a randomly selected representative sample of caregivers for persons who suffer from all types of disorders that result in dependence, and the cases of MDEs were identified by clinically trained interviewers with the aid of the Structured Clinical Interview for DSM-IV Axis I Disorders. This study has important implications for policy, clinical practice, and service delivery. Documentation of the prevalence of depression in the NC population is critical for governments, medical centers, and social services, since it provides the information required to estimate the need for services and appropriate preventive/treatment interventions to support this population. Given the high prevalence of depression this study found among NCs compared with the general population, and given that major depressive disorders significantly impair functioning and may compromise NCs' ability to care for others, clinicians should be attentive to its assessment and diagnosis, especially among older and unemployed caregivers. It is possible that health professionals consider depressive symptoms to be a normal reaction to the very stressful situation of taking care of someone with a long-term illness or disability, but this leads to a failure to detect, prevent, and treat depressive disorders among NCs. Furthermore, we must not forget that depression in caregivers is documented to be associated with a low quality of life, premature institutionalization, and mistreatment of the care recipient (Karlawish et al., 2001). This study has some limitations. Firstly, it was cross-sectional and only correlates could be assessed. A cross-sectional design is not able to capture the differences in NCs' depression in response to time or changes of the care recipient's clinical condition (Grunfeld et al., 2004). In addition, we were unable to assess psychiatric comorbidity in the diagnostic interview, which creates some uncertainty about the strength of the correlations and the specificity of the correlates to MDEs as opposed to psychiatric disorders in general. It would be interesting to use self-report scales that could add complementary information on the severity of depressive symptoms, although it is important to keep in mind that the aim of this study was to determine the prevalence of the diagnosis of MDE, and we used today's goldstandard method to establish a diagnosis. Future studies could include other instruments and compare objective and subjective instruments in order to complement this information and take into account certain important subjective perceptions of caregivers when considering the treatment options they need. Finally, we did not assess the quality of care provided by the NCs, so we cannot conclude that the care given by NCs with current major depression is of poorer quality than those without depression, as Williamson and Shaffer (2001) point out, although this is certainly plausible. In conclusion, our finding that MDEs are highly prevalent in NCs of dependent patients, especially NCs who are older and unemployed, suggests that caregiver monitoring to ensure their mental health and well-being should be an important goal of health care policy.
Contributions Angela Torres conceived of, designed, coordinated, and supervised the study, and participated in the production of the paper.
Vanessa Blanco participated in the study design and the production of the paper. Fernando L. Vázquez conceived of, designed, coordinated, and supervised the study, and participated in the production of the paper. Olga Díaz, Patricia Otero, and Elisabet Hermida participated in the study design and gave important suggestions incorporated into the production of the paper. Elisabet Hermida participated in the data analysis. All authors read and revised the manuscript and approved the final version.
Conflict of interest On behalf of all authors, the corresponding author states that there is no conflict of interest.
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Please cite this article as: Torres, Á., et al., Prevalence of major depressive episodes in non-professional caregivers. Psychiatry Research (2015), http://dx.doi.org/10.1016/j.psychres.2014.12.066i
