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Patient depression and caregiver attitudes: Results from The AgeD in HOme Care study
Journal of Affective Disorders 106 (2008) 107 – 115 www.elsevier.com/locate/jad
Research report
Patient depression and caregiver attitudes: Results from The AgeD in HOme Care study Manuel Soldato a , Rosa Liperoti a , Francesco Landi a , Iain G. Carpenter b , Roberto Bernabei a , Graziano Onder a,⁎ a
Department of Gerontology, Catholic University of Sacred Heart, Roma, Italy b Centre for Health Services Studies, University of Kent, Canterbury, UK
Received 27 February 2007; received in revised form 29 May 2007; accepted 30 May 2007 Available online 5 July 2007
Abstract Background: The present cross-sectional study was aimed to evaluate the association between care recipient depression and caregiver attitudes. Methods: Data were from The AgeD in HOme Care project, a study enrolling subjects aged ≥65 years receiving home care in Europe. Depression was diagnosed as a score ≥3 on the MDS Depression Rating Scale. Caregiver attitudes were assessed using two measures: 1) caregiver dissatisfaction (the caregiver was dissatisfied with the support received from family and friends); and 2) caregiver distress (the caregiver expressed feelings of distress, anger, or depression). Results: Mean age of 3415 participants was 82.4 years, 2503 (73.3%) were women and 430 (12.6%) were depressed. Dissatisfaction was significantly more common among caregivers of depressed, compared with those of non depressed patients (32/ 430, 7.4% vs. 78/2985, 2.6%; p = b0.001). After adjusting for potential confounders, patient depression was still significantly associated with caregiver dissatisfaction (OR: 1.84; 95% CI: 1.12–3.03). Similarly, distress was significantly more common among caregivers of depressed patients, compared with those of non depressed patients (81/430, 18.8% vs. 175/2985, 5.9%; p b 0.001). After adjusting for potential confounders, patient depression was still significantly associated with caregiver distress (OR: 2.41; 95% CI: 1.72–3.39). Limitations: The cross-sectional design of the study cannot provide the cause–effect relationship between depression and caregiver attitude; no data were collected on caregiver characteristics. Conclusions: Among older adults depression is associated with increased caregiver dissatisfaction and distress. Knowledge of factors influencing caregiver attitudes may be valuable to study interventions aimed to promote patient and caregiver well being. © 2007 Elsevier B.V. All rights reserved. Keywords: Depression; Older adults; Home care; Caregiver distress
1. Introduction ⁎ Corresponding author. Centro Medicina dell'Invecchiamento, Università Cattolica del Sacro Cuore, Policlinico A. Gemelli, L.go Francesco Vito 1, 00168 Roma, Italy. Tel.: +39 06 30154341; fax: +39 06 3051911. E-mail address: [email protected] (G. Onder). 0165-0327/$ - see front matter © 2007 Elsevier B.V. All rights reserved. doi:10.1016/j.jad.2007.05.029
Depression is considered one of the most frequent psychiatric disorders in the elderly population and its prevalence ranges between 12 and 20% among community dwelling older adults (Kessler et al., 2003). Depressive
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symptoms have been associated with adverse outcomes, including increased risk of morbidity and mortality, poor health status, high prevalence of disability and severe comorbidity (Blazer, 2003; Onder et al., 2005a,b). In addition, the course of depression in late life is often chronic or recurrent. Therefore, this condition represents a major determinant of decreased quality of life for the elderly (Blazer, 2003, Penninx et al., 2000). It is well known that caregiver characteristics, in particular level of stress and perceived burden, are important determinants of quality of care for the elderly. Caregiver dissatisfaction and distress have been previously associated with an increased risk of hospitalization and nursing home admission among care recipients (McFall and Miller, 1992; Shugarman et al., 2002). Identification of factors influencing caregiver attitudes is therefore crucial to design interventions aimed at promoting both patient and caregiver well being. Several studies have analysed determinants of caregiver attitudes and identified the presence of cognitive impairment and behavioural symptoms as the strongest factors associated with this outcome (Pearson et al., 1988; Livingston et al., 1996; Schneider et al., 1999; Rosenvinge et al., 1998). However, the association between caregiver attitudes and other patient characteristics has rarely been explored. In particular, the association between depression and caregiver attitudes has rarely been explored and available studies are limited by small sample sizes, or by recruiting older adults in particular settings (i.e. Emergency Department or mental health clinics), or with specific conditions (i.e. Parkinson's disease and dementia) (Scazufca et al., 2002; Sewitch et al., 2004; van Wijngaarden et al., 2004; Aarsland et al., 1999; Gallicchio et al., 2002; Meshefedjian et al., 1998). The objective of the present study is to explore this issue in a large population of older adults living in the community. To this aim we performed a cross-sectional analysis of data from the AdHOC study, which enrolls a large sample of community-dwelling elderly patients receiving home-care services in 11 European countries. 2. Methods For the present study we used a random sample of elderly patients admitted to the home-care programs in urban areas of 11 European countries, – from 2001 to 2003 – who participated to The AgeD in HOme Care (AdHOC) project (2001–2003), funded by the European Union. The main objective of The AdHOC Project was to identify a model of Home Care for the elderly through the analysis of the structural and organisational characteristics of Home-Care Services in different countries of Europe, along with the clinical and functional characteristics of
their clients. As described elsewhere (Carpenter et al., 2004), at each site, the sample was obtained by a computer driven randomisation of all subjects aged 65 years or more already receiving home-care services. When specific services (e.g., “integrated” or “social” only) were provided by different agencies, the sample reflected the overall proportion of older adults receiving the services of interest. Patients were assessed in the following urban areas: Prague (Czech Republic, n = 428), Copenhagen (Denmark, n = 466), Helsinki (Finland, n = 187), Amiens (France, n = 381), Nurnberg and Bayreuth (Germany, n = 607), Reykjavik (Iceland, n = 405), Monza (Italy, n = 412), Rotterdam (The Netherlands, n = 198), Oslo (Norway, n = 388), Stockholm (Sweden, n = 246), Maidstone and Ashford (United Kingdom, n = 289). 2.1. Data collection To accomplish the purpose of the AdHOC study, data were collected using the Minimum Data Set for Home Care (MDS-HC) assessment instrument, following the guidelines published in the MDS-HC manual (Morris et al., 1996). In Finland, France, Germany and Iceland assessments were conducted by agency personnel, in all other countries, they were conducted by research assistants recruited for the project. All received a standardised training program on how to complete the assessment. Patients invited to take part in the study were free to decline participation. Patient consent was obtained with assurance of data confidentiality and ethical approval for the study was obtained in all countries according to local regulations. 2.2. MDS-HC assessment data The MDS-HC contains over 350 data elements including socio-demographic variables, numerous clinical items about both physical and cognitive status, as well as all clinical diagnoses (Morris et al., 1996). In the MDS-HC are also included information about an extensive array of signs, symptoms, syndromes, and treatments being provided. The MDS is an instrument that has been developed in the United States, but studies have validated the MDS across different languages and countries (Sgadari et al., 1997; Morris et al., 1997). 2.2.1. Depression The Depression Rating Scale was used to evaluate the presence of depressive symptoms (Burrows et al., 2000) (items from E1a to E1i). Weighted kappa for items assessing depression (Section E1) was 0.61 (Morris et al.,
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1997). This scale has proven reliable for detecting depression among older adults and participants with a score ≥3 were diagnosed as depressed (Burrows et al., 2000). 2.2.2. Caregiver's attitudes The primary caregiver was defined as the family member, friend or neighbour (but not paid provider) who was most helpful to the participant and who he/she could most rely upon. It was not required that the caregiver lived with the participant, rather than he/she visited regularly or would respond to needs of the participant. The MDS-HC includes items which assess primary caregiver attitudes regarding subjective burden of the caregiving. These items report the presence or absence of (1) caregiver dissatisfaction (the caregiver is dissatisfied with the support received from family and friends) (item G2b) and (2) caregiver distress (the caregiver expresses feelings of distress, anger, or depression) (item G2c). Weighted kappa for items assessing informal support services (Section G) was 0.66 (Morris et al., 1997). These measures were already used in a study assessing the association between caregiver attitudes and patients outcomes (Shugarman et al., 2002).
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2.2.3. Covariates Clinical diagnoses were recorded by a study physician who gathered information from the patient and the general practitioner, performed a physical examination, a careful review of patient clinical documentation and previous medical history. The cognitive performance scale (CPS) was used to assess cognitive status (items B1a, B2a, C3a, H2g) (Hawes et al., 1995). Cognitive impairment was considered to be present for CPS score ≥2. Activities of daily living (ADL) were used to assess physical function and ADL disability was defined as the need of assistance in 1 or more of the following ADL: eating, dressing, transferring, mobility in bed, personal hygiene and toileting (items H2a, H2b and from H2e to H2i). Behavioural symptoms were present if the participant exhibited one or more of the following symptoms in the 3 days prior to assessment: wandering, verbally abusive, physically abusive, socially inappropriate behaviour and active resistance of care (items from E3a to E3e). Participants with less than 6 months of expected survival were defined terminally ill (item K8e). Hours of informal care were defined as hours of help for instrumental and personal activities of daily living received over the last 7 days from any informal caregiver (items G3a and G3b). Hours of formal care were defined as
Fig. 1. Prevalence of caregiver's dissatisfaction (upper panel) and caregiver's distress (lower panel) by country. CZ = Czech Republic, D = Germany, DK = Denmark, F = France, FIN = Finland, I = Italy, IS = Iceland, NL = The Netherlands, NO = Norway, S = Sweden, UK = United Kingdom.
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overall hours of assistance received from home-care services over the last 7 days (items from P1a to P1j). MDS items have been found to have excellent inter-rater and test–retest reliability when completed by nurses performing usual assessment duties (average weighted Kappa = 0.7) (Morris et al., 1997). 2.3. Study sample and statistical analysis From the initial sample of 4007 subjects, we excluded participants without caregiver (N = 420), those with missing data on presence of caregiver (N = 138), depression assessment (N = 30) and cognitive impairment (N = 4). This resulted in a sample size of 3415 participants. Baseline characteristics of study participants, according to presence of depression were compared using ANOVA analyses for normally distributed variables, nonparametric Kruskal–Wallis H tests for skewed variables, and chi-square analyses for dichotomous variables. Logistic regression models were used to evaluate the association between depression and caregiver attitudes providing crude and adjusted measures of association. Covariates in the final adjusted model included age, gender, site and those variables associated with depression at p ≤ 0.10 at the univariate analysis. Since previous publications have identified cognitive impairment and behavioural symptoms as strong predictors of caregiver attitudes (Pearson et al., 1988; Livingston et al., 1996; Schneider et al., 1999; Rosenvinge et al., 1998), subgroup analyses stratified on cognitive status and presence of behavioral symptoms were performed. Finally, additional logistic regression models were performed to evaluate whether or not the strength of the observed association between patient depression and caregiver attitudes increased with the number of depressive symptoms. All analyses were performed using SPSS for Windows version 10.0. 3. Results Mean age of study participants was 82.4 (Standard Deviation 7.3) years, and 2503 (73.3%) were women. Of the total sample, 430 participants (12.6%) presented with depression, 110 (3.2%) caregivers were dissatisfied and 256 (7.5%) distressed. As shown in Fig. 1, prevalence of caregiver dissatisfaction differed among study sites, ranging from 0.3% in Denmark and Iceland to 8.2% in France. Similarly, prevalence of caregiver distress differed among study sites, ranging from 1% in Sweden to 17.7% in Italy. Characteristics of the study population according to the presence of depression are summarized in Table 1.
Table 1 Characteristics of study population according to presence of depression a Characteristics
No. depression Depression p N = 2985 n = 430
Age, years (mean ± standard deviation) Female gender Living alone A flare up of a chronic or recurrent condition N of coexisting diseases (mean ± SD) Cognitive impairment b ADL disability Diseases Ischemic heart disease Peripheral vascular disease Stroke Hypertension Diabetes Congestive heart failure Parkinson's disease Cancer Osteoarthritis Chronic obstructive pulmonary disease Explicit terminal illness Presence of pain History of falls Any behavioural symptom Fecal incontinence Urinary incontinence Hours of formal care Hours of informal care
82.6 ± 7.3
81.3 ± 7.3
2180 (73.0) 1734 (58.1) 290 (9.7)
323 (75.1) 202 (47) 91 (21.2)
0.35 b0.001 b0.001
1.8 ± 1.4
2.4 ± 1.6
b0.001
822 (27.5) 1126 (37.7)
210 (48.8) 235 (54.8)
b0.001 b0.001
572 (19.2) 392 (13.1) 530 (17.8) 962 (32.2) 516 (17.3) 690 (23.1) 147 (4.9) 219 (7.3) 741 (24.8) 315 (10.6)
114 (26.5) 95 (22.1) 105 (24.4) 174 (40.5) 102 (23.7) 128 (29.8) 34 (7.9) 47 (10.9) 128 (29.8) 53 (12.3)
b0.001 b0.001 b0.001 0.001 0.001 0.003 0.01 0.01 0.03 0.26
24 (0.8) 1170 (39.6) 747 (25.1) 155 (5.2) 361 (12.1) 894 (30.0) 20.4 ± 64.1 22.2 ± 41.3
6 (1.4) 246 (57.5) 154 (36) 93 (21.6) 72 (16.8) 152 (35.5) 25.5 ± 63.4 37.0 ± 50.3
0.22 b0.001 b0.001 b0.001 0.01 0.02 0.15 b0.001
0.001
ADL = activities of daily living. a Defined as MDS depression rating scale ≥3. b Defined as cognitive performance scale score N2.
Compared with participants without depression, those depressed were slightly younger, less likely to live alone, had a higher prevalence of cognitive impairment, ADL disability, urinary and fecal incontinence, behavioural symptoms, a higher rate of falls and pain, and experienced more coexisting diseases, including ischemic heart disease, chronic heart failure, hypertension, peripheral vascular disease, stroke, diabetes, Parkinson's disease, osteoarthritis and cancer. In addition, depressed participants received more hours of informal care compared with non depressed participants, while hours of formal care, despite slightly higher among depressed participants, did not differ significantly between the study groups. Dissatisfaction was significantly more common among caregivers of depressed, compared with those of
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Table 2 Association between patient depression and caregiver's dissatisfaction
Total sample No depression (n = 2985) Depression (n = 430) Cognitive impairment No depression (n = 822) Depression (n = 210) No cognitive impairment No depression (n = 2163) Depression (n = 220) Behavioral symptoms No depression (n = 155) Depression (n = 93) No behavioral symptoms No depression (n = 2830) Depression (n = 337)
Prevalence of caregiver dissatisfaction N (%)
Crude OR (95% CI)
Adjusted⁎ OR (95% CI)
78 (2.6%) 32 (7.4%)
1 (reference) 3.00 (1.96–4.58)
1 (reference) 1.84 (1.12–3.03)
42 (5.1%) 18 (8.6%)
1 (reference) 1.74 (0.98–3.09)
1 (reference) 1.34 (0.68–2.65)
36 (1.7%) 14 (6.4%)
1 (reference) 4.01 (2.13–7.56)
1 (reference) 2.98 (1.41–6.33)
12 (7.7%) 18 (19.4%)
1 (reference) 2.88 (1.32–6.29)
1 (reference) 3.82 (1.25–11.67)
66 (2.3%) 14 (4.2%)
1 (reference) 1.82 (1.01–3.27)
1 (reference) 1.43 (0.75–2.70)
⁎Adjusted for age, gender, living alone, a flare up of a chronic or recurrent condition, number of coexisting diseases, ADL disability, cognitive impairment, ischemic heart disease, congestive heart failure, hypertension, peripheral artery disease, stroke, diabetes, osteoarthritis, cancer, Parkinson's disease, history of falls, urinary incontinence, fecal incontinence, presence of pain, behavioral symptoms, hours of informal care and site.
non depressed patients (7.4% vs. 2.6%; p = b0.001). After adjusting for potential confounders, which included age, gender, living alone, a flare up of a chronic or recurrent condition, number of coexisting diseases, ADL disability, cognitive impairment, ischemic heart disease, congestive heart failure, hypertension, peripheral artery disease, stroke, diabetes, osteoarthritis, cancer, Parkinson's disease, history of falls, urinary incontinence, fecal incontinence, presence of pain, behavioural symptoms, hours of
informal care and site, this result was still significant (Odds Ratio: 1.84; 95% Confidence Interval: 1.12–3.03). When we stratified the analysis by cognitive status and presence of behavioural symptoms, the association of patient depression and caregiver dissatisfaction (Table 2) seemed stronger in participants without cognitive impairment (OR: 2.98; 95% CI: 1.41–6.33) than those with cognitive impairment (OR: 1.34; 95% CI: 0.68–2.65), and in participants with behavioural
Table 3 Association between patient depression and caregiver's distress
Total sample No depression (n = 2985) Depression (n = 430) Cognitive impairment No depression (n = 822) Depression (n = 210) No cognitive impairment No depression (n = 2163) Depression (n = 220) Behavioural symptoms No depression (n = 155) Depression (n = 93) No behavioural symptoms No depression (n = 2830) Depression (n = 337)
Prevalence of caregiver distress N (%)
Crude OR (95% CI)
Adjusted⁎ OR (95% CI)
175 (5.9%) 81 (18.8%)
1 (reference) 3.73 (2.80–4.97)
1 (reference) 2.41 (1.72–3.39)
101 (12.3%) 51 (24.3%)
1 (reference) 2.29 (1.57–3.34)
1 (reference) 1.97 (1.26–3.08)
74 (3.4%) 30 (13.6%)
1 (reference) 4.46 (2.84–6.99)
1 (reference) 3.01 (1.76–5.13)
26 (16.8%) 33 (35.5%)
1 (reference) 2.75 (1.51–5.00)
1 (reference) 2.73 (1.27–5.85)
149 (5.3%) 48 (14.2%)
1 (reference) 2.99 (2.11–4.23)
1 (reference) 2.19 (1.47–3.24)
⁎Adjusted for age, gender, living alone, a flare up of a chronic or recurrent condition, number of coexisting diseases, ADL disability, cognitive impairment, ischemic heart disease, congestive heart failure, hypertension, peripheral artery disease, stroke, diabetes, osteoarthritis, cancer, Parkinson's disease, history of falls, urinary incontinence, fecal incontinence, presence of pain, behavioural symptoms, hours of informal care and site.
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symptoms (OR: 3.82; 95% CI: 1.25–11.67) than those without behavioural symptoms (OR: 1.43; 95% CI: 0.75–2.70). However, when we formally tested the interaction between cognitive impairment and depression and between behavioural symptoms and depression, we did not found any significant result ( p = 0.33 and p = 0.58, respectively). Similarly, as shown in Table 3, distress was significantly more common among caregivers of depressed patients, compared with those of non depressed patients (18.8% vs. 5.9%; p b 0.001). This result remained statistically significant after adjusting for all potential confounder (OR 2.41; 95% CI: 1.72–3.39). After stratification of the sample by cognitive status and presence of behavioural symptoms we still found significant results. Participants living alone received a lower number of hours of informal care compared to those not living alone (7.6 ± 17.8 vs. 45.7 ± 54.9, p b 0.001) and caregivers of participants living alone were less dissatisfied (1.5% vs. 5.4%, p b 0.001) and distressed (3.1% vs. 13.3%, p b 0.001) than those of participants not living alone. However, the association of patient depression and caregiver dissatisfaction and distress was consistent after exclusion of participants living alone (dissatisfaction: OR: 2.14; 95% CI: 1.18–3.88; distress OR: 1.89; 95% CI: 1.26–2.82). Figs. 2 and 3 report the association of caregiver dissatisfaction and distress with number of depressive symptoms. The Odds Ratio for presence of both caregiver dissatisfaction and distress progressively increased as the
Fig. 2. Odds Ratio and 95% confidence intervals for caregiver's dissatisfaction by number of depressive symptoms. Analysis adjusted by age, gender, living alone, a flare up of a chronic or recurrent condition, number of coexisting diseases, ADL disability, cognitive impairment, ischemic heart disease, congestive heart failure, hypertension, peripheral artery disease, stroke, diabetes, osteoarthritis, cancer, Parkinson's disease, history of falls, urinary incontinence, fecal incontinence, presence of pain, behavioural symptoms, hours of informal care and site.
Fig. 3. Odds Ratio and 95% confidence intervals for caregiver's distress by number of depressive symptoms. Analysis adjusted by age, gender, living alone, a flare up of a chronic or recurrent condition, number of coexisting diseases, ADL disability, cognitive impairment, ischemic heart disease, congestive heart failure, hypertension, peripheral artery disease, stroke, diabetes, osteoarthritis, cancer, Parkinson's disease, history of falls, urinary incontinence, fecal incontinence, presence of pain, behavioural symptoms, hours of informal care and site.
number of participant depressive symptoms increased ( p for trend 0.01 and b 0.001, respectively). 4. Discussion The present study shows that among patients in home care in Europe, depression is associated with caregiver distress and dissatisfaction. The strength of the association increases as number of depressive symptoms increased and it is consistent independently of cognitive status and presence of behavioural symptoms. Previous studies have shown that caregiver's distress is associated with physical, social, and financial consequences, social isolation, and direct (e.g., medications) and indirect (e.g., loss of earnings due to relinquishing of paid work) financial costs (Livingston et al., 1996; Schulz and Beach, 1999). Caregivers are crucial for maintaining older adults in the community, and caregiver distress and dissatisfaction were associated with higher use of services (including increased rate of hospitalization and nursing home admission) and worsening health status of care recipients (McFall and Miller, 1992; Shugarman et al., 2002). Therefore, understanding factors associated with caregiver attitudes is important to study interventions aimed to promote patient and caregiver well being and reduce costs (Selwood et al., 2007). The present study extends to a large population of older adults in home care in Europe findings of previous studies suggesting the presence of a relation between depressive symptoms and caregiver's attitudes. Scazufca et al. (2002)
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found an association between caregiver burden and patient depression in a group of 82 older adults in two outpatients' mental health clinics. This study was limited by the small sample size and by the lack of relevant confounders (including comorbid conditions and cognitive function) that may have influenced results. Another cross-sectional study of 193 family caregivers of seniors treated in Emergencies Department provided support for a relationship between patient depression and mental health and quality of life of their family caregivers (Sewitch et al., 2004). Finally, van Wijngaarden et al. (2004) examined the caregiving consequences of 260 spouses and relatives of depressed adults (mean age 45 years), showing that caregivers of depressed patients mainly report consequences related to the interpersonal aspects of their relationship, such as worrying, feeling burdened, and interpersonal stress. In addition, this study demonstrated that patient depression affects daily routines and role functioning, poses a stress on interpersonal relations, and leads to symptoms of distress in spouses and children. Finally, a higher rate of distress was associated with patient depression among caregivers of persons with Parkinson's disease (Aarsland et al., 1999) and dementia (Gallicchio et al., 2002; Meshefedjian et al., 1998). The association between patient depression and caregiver distress may be due to a number of factors. First, depressed patients may require more help in performing everyday basic tasks, including basic and instrumental activities of daily living than non depressed patients (Penninx et al., 2000), therefore increasing caregiver burden. In the present study, we adjusted the analyses for the extent of help received in the last 7 days from any informal caregiver, but we did not collect the exact time the primary caregiver spent with the patient. Therefore we cannot completely rule out the hypothesis that our findings may be related to a heavier burden of care. Second, depression is often accompanied by considerable social isolation and withdrawal from those activities and individuals that would be essential in providing emotional support and assistance (Blazer, 2003). This isolation may involve the caregiver and therefore result in an increased rate of distress and dissatisfaction. Third, it is now well established that being a caregiver can produce psychological benefits, which include an enhanced caregiver–care recipient relationship (Amirkhanyan and Wolf, 2003). Caregivers of patients with depression may lack this kind of ‘rewords’. An alternative explanation to our findings is that the link between depression and caregiver attitudes is caused by unmeasured confounders. Although the current analyses were adjusted for many potential confounders residual confounding is always possible.
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Finally, a possible explanation for our findings is that depression could be a consequence of caregiver distress and dissatisfaction rather than the cause of it. Indeed the cross-sectional design of the present study does not allow to define the temporal relationship between the onset of depression and caregiver distress and dissatisfaction. In the present study the association of both caregiver distress and dissatisfaction with patient's depression seems stronger among cognitively intact rather than cognitively impaired participants. This finding can be related to the fact that caregivers of cognitively impaired subjects may have already experienced a loss of ‘affective’ relationship with care recipients and therefore their attitudes are influence by care-recipients mood problems to a lower extent than those caregivers of cognitively intact subjects that still preserve this relationship. However, it is necessary to mention that we did not find any significant interaction between cognitive impairment and depression and therefore the effect of cognition on the association between caregiver attitudes and patient's depression should be tested and confirmed in larger studies. The variables we used to assess caregiver attitudes explore two different types of burden: the variable assessing caregiver dissatisfaction may be considered a measure of interpersonal burden, while the one assessing caregiver distress may be considered a measure of personal burden. Interpersonal burden is a reflection of the problems the caregiver has with the impaired individual's condition, whereas personal burden reflects the caregiver's appraisal of limitations on the caregiver's activities as a result of providing care to the impaired person (Shugarman et al., 2002). For this reason it should not surprise the presence of differences in the prevalence of these two measures within countries. The present study has several limitations. First, results of the present study are based on elderly receiving home care in Europe, cannot be extrapolated to younger subjects and to older adults living in other settings. Second, although the MDS-HC is a standardized, comprehensive assessment instrument, the recording of depressive symptoms is not its specific focus. Depressive symptoms were assessed based on clinical records, consultation of primary caregivers and patient clinician, but also on independent observation and conversation with participants (Morris et al., 1996). Therefore, the potential for over- or underestimation of symptoms, depending on the training of study personnel and time spent with participants, remains a concern and it may explain differences observed in studies assessing reliability of the MDS Depression Rating Scale (Burrows et al., 2000; Snowden et al., 2003). Finally, we did not collect data on caregiver
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characteristics, including age, gender, comorbidity, distance from care recipients (if not living with them) which may influence their attitudes. In conclusion the present study shows that patient depression is associated with caregiver distress and dissatisfaction and the strength of this association increases as the number of depressive symptoms increases. More research is required to confirm these findings in longitudinal studies and to establish if treatment of depression in older adults can influence caregiver attitudes. Future studies on caregiver attitudes should consider multiple complex characteristics of care recipients including depression. Role of the funding source The AdHOC project was founded by a grant from the Fifth Framework Programme on “Quality of Life and Management of Living Resources” of the European Union. None of the authors have any financial interests related to this article. None have conflicts of interest, financial arrangements, or consultantships with a company whose product is associated with the submitted manuscript. The sponsor has no further role in the study. The authors retained complete independence in scientific investigation and reporting. Conflict of interest None of the authors has actual or potential conflict of interest including any financial, personal or other relationships with other people or organizations within three (3) years of beginning the work submitted that could inappropriately influence, or be perceived to influence, their work.
Acknowledgements This large and complex study required very substantial commitment from many staff within the participating research organisations and health and social care services of each country. It would not have been possible without their collaboration in the face of many frustrations and time consuming tasks. Their contribution is gratefully acknowledged by lead investigators of the study. The Partners in each country are Fellows of interRAI, an international research collaboration whose general membership contributed critical advice and support through all stages of the project. References Aarsland, D., Larsen, J.P., Karlsen, K., Lim, N.G., Tandberg, E., 1999. Mental symptoms in Parkinson's disease are important contributors to caregiver distress. Int. J. Geriatr. Psychiatry 14, 866–874. Amirkhanyan, A.A., Wolf, D.A., 2003. Caregiver stress and noncaregiver stress: exploring the pathways of psychiatric morbidity. Gerontologist 43, 817–827. Blazer, D.G., 2003. Depression in late life: review and commentary. J. Gerontol., Ser. A, Biol. Sci. Med. Sci. 58, 249–265.
Burrows, A.B., Morris, J.N., Simon, S.E., Hirdes, J.P., Phillips, C., 2000. Development of a minimum data set-based depression rating scale for use in nursing homes. Age Ageing 29, 165–172. Carpenter, I., Gambassi, G., Topinkova, E., Schroll, M., FinneSoveri, H., Henrard, J.C., Garms-Homolova, V., Jonsson, P., Frijters, D., Ljunggren, G., Sorbye, L.W., Wagner, C., Onder, G., Pedone, C., Bernabei, R., 2004. Community care in Europe. The Aged in Home Care project (AdHOC). Aging Clin. Exp. Res. 16, 259–269. Gallicchio, L., Siddiqi, N., Langenberg, P., Baumgarten, M., 2002. Gender differences in burden and depression among informal caregivers of demented elders in the community. Int. J. Geriatr. Psychiatry 17, 154–163. Hawes, C., Morris, J.N., Phillips, C.D., Mor, V., Fries, B.E., Nonemaker, S., 1995. Reliability estimates for the Minimum Data Set for nursing home resident assessment and care screening (MDS). Gerontologist 35, 172–178. Kessler, R.C., Berglund , P., Demler , O., Jin , R., Koretz, D., Merikangas, K.R., Rush, A.J., Walters, E.E., Wang, P.S., National Comorbidity Survey Replication, 2003. The epidemiology of major depressive disorder: results from the National Comorbidity Survey Replication (NCS-R). JAMA 289, 3095–3105. Livingston, G., Manela, M., Katona, C., 1996. Depression and other psychiatric morbidity in carers of elderly people living at home. Br. Med. J. 312, 153–156. Meshefedjian, G., McCusker, J., Bellavance, F., Baumgarten, M., 1998. Factors associated with symptoms of depression among informal caregivers of demented elders in the community. Gerontologist 38, 247–253. Morris, J.N., Fries, B.E., Bernabei, R., Ikegami, N., Gilgen, R., Steel, K., Carpenter, I., 1996. RAI — Home Care Assessment Manual. InterRAI Corporation, Washington, DC. Morris, J.N., Fries, B.E., Steel, K., Ikegami, N., Bernabei, R., Carpenter, G.I., Gilgen, R., Hirdes, J.P., Topinkova, E., 1997. Comprehensive clinical assessment in community setting: applicability of the MDSHC. J. Am. Geriatr. Soc. 45, 1017–1024. McFall, S., Miller, B.H., 1992. Caregiver burden and nursing home admission of frail elderly persons. J. Geront., Ser. B Psychol. Sci. Soc. Sci. 47B, S73–S79. Onder, G., Landi, F., Gambassi, G., Liperoti, R., Soldato, M., Catananti, C., Finne-Soveri, H., Katona, C., Carpenter, I., Bernabei, R., 2005a. Association between pain and depression among older adults in Europe: results from the Aged in Home Care (AdHOC) project: a cross-sectional study. J. Clin. Psychiatry 66, 982–988. Onder, G., Penninx, B.W., Cesari, M., Bandinelli, S., Lauretani, F., Bartali, B., Gori, A.M., Pahor, M., Ferrucci, L., 2005b. Anemia is associated with depression in older adults: results from the InCHIANTI study. J. Gerontol., Ser. A, Biol. Sci. Med. Sci. 60, 1168–1172. Pearson, J., Verma, S., Nellet, C., 1988. Elderly psychiatric patient status and caregiver perceptions as predictors of caregiver burden. Gerontologist 28, 79–83. Penninx, B.W., Deeg, D.J., van Eijk, J.T., Beekman, A.T., Guralnik, J.M., 2000. Changes in depression and physical decline in older adults: a longitudinal perspective. J. Affect. Disord. 61, 1–12. Rosenvinge, H., Jones, D., Judge, E., Martin, A., 1998. Demented and chronic depressed patients attending a day hospital: stress experienced by carers. Int. J. Geriatr. Psychiat. 13, 8–11. Scazufca, M., Paulo, R.M., Osvaldo, P.A., 2002. Caregiver burden in an elderly population with depression in Sao Paulo, Brazil. Soc. Psychiatry Psychiatr. Epidemiol. 37, 416–422. Schneider, J., Murray, J., Banerjee, S., Mann, A., 1999. EUROCARE: a cross-national study of co-resident spouse carers for people with
M. Soldato et al. / Journal of Affective Disorders 106 (2008) 107–115 Alzheimer's disease: I. Factors associated with carer burden. Int. J. Geriatr. Psychiat. 14, 651–661. Schulz, R., Beach, S.R., 1999. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA. 282, 2215–2219. Selwood, A., Johnston, K., Katona, C., Lyketsos, C., Livingston, G., 2007. Systematic review of the effect of psychological interventions on family caregivers of people with dementia. J. Affect. Disord. 101, 75–89. Sewitch, M.J., McCusker, J., Dendukuri, N., Yaffe, M.J., 2004. Depression in frail elders: impact on family caregivers. Int. J. Geriatr. Psychiatry. 19, 655–665. Sgadari, A., Morris, J.N., Fries, B.E., Ljunggren, G., Jonsson, P.V., DuPaquier, J.N., Schroll, M., 1997. Efforts to establish the
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reliability of the resident assessment instrument. Age Ageing 26 (Suppl 2), 27–30. Shugarman, L.R., Buttar, A., Fries, B.E., Moore, T., Blaum, C.S., 2002. Caregiver attitudes and hospitalization risk in michigan residents receiving home- and community-based care. J. Am. Geriatr. Soc. 50, 1079–1085. Snowden, M., Sato, K., Roy-Byrne, P., 2003. Assessment and treatment of nursing home residents with depression or behavioral symptoms associated with dementia: a review of the literature. J. Am. Geriatr. Soc. 51, 1305–1317. van Wijngaarden, B., Schene, A.H., Koeter, M.W., 2004. Family caregiving in depression: impact on caregivers' daily life, distress, and help seeking. J. Affect. Disord. 81, 211–222.
Research report
Patient depression and caregiver attitudes: Results from The AgeD in HOme Care study Manuel Soldato a , Rosa Liperoti a , Francesco Landi a , Iain G. Carpenter b , Roberto Bernabei a , Graziano Onder a,⁎ a
Department of Gerontology, Catholic University of Sacred Heart, Roma, Italy b Centre for Health Services Studies, University of Kent, Canterbury, UK
Received 27 February 2007; received in revised form 29 May 2007; accepted 30 May 2007 Available online 5 July 2007
Abstract Background: The present cross-sectional study was aimed to evaluate the association between care recipient depression and caregiver attitudes. Methods: Data were from The AgeD in HOme Care project, a study enrolling subjects aged ≥65 years receiving home care in Europe. Depression was diagnosed as a score ≥3 on the MDS Depression Rating Scale. Caregiver attitudes were assessed using two measures: 1) caregiver dissatisfaction (the caregiver was dissatisfied with the support received from family and friends); and 2) caregiver distress (the caregiver expressed feelings of distress, anger, or depression). Results: Mean age of 3415 participants was 82.4 years, 2503 (73.3%) were women and 430 (12.6%) were depressed. Dissatisfaction was significantly more common among caregivers of depressed, compared with those of non depressed patients (32/ 430, 7.4% vs. 78/2985, 2.6%; p = b0.001). After adjusting for potential confounders, patient depression was still significantly associated with caregiver dissatisfaction (OR: 1.84; 95% CI: 1.12–3.03). Similarly, distress was significantly more common among caregivers of depressed patients, compared with those of non depressed patients (81/430, 18.8% vs. 175/2985, 5.9%; p b 0.001). After adjusting for potential confounders, patient depression was still significantly associated with caregiver distress (OR: 2.41; 95% CI: 1.72–3.39). Limitations: The cross-sectional design of the study cannot provide the cause–effect relationship between depression and caregiver attitude; no data were collected on caregiver characteristics. Conclusions: Among older adults depression is associated with increased caregiver dissatisfaction and distress. Knowledge of factors influencing caregiver attitudes may be valuable to study interventions aimed to promote patient and caregiver well being. © 2007 Elsevier B.V. All rights reserved. Keywords: Depression; Older adults; Home care; Caregiver distress
1. Introduction ⁎ Corresponding author. Centro Medicina dell'Invecchiamento, Università Cattolica del Sacro Cuore, Policlinico A. Gemelli, L.go Francesco Vito 1, 00168 Roma, Italy. Tel.: +39 06 30154341; fax: +39 06 3051911. E-mail address: [email protected] (G. Onder). 0165-0327/$ - see front matter © 2007 Elsevier B.V. All rights reserved. doi:10.1016/j.jad.2007.05.029
Depression is considered one of the most frequent psychiatric disorders in the elderly population and its prevalence ranges between 12 and 20% among community dwelling older adults (Kessler et al., 2003). Depressive
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symptoms have been associated with adverse outcomes, including increased risk of morbidity and mortality, poor health status, high prevalence of disability and severe comorbidity (Blazer, 2003; Onder et al., 2005a,b). In addition, the course of depression in late life is often chronic or recurrent. Therefore, this condition represents a major determinant of decreased quality of life for the elderly (Blazer, 2003, Penninx et al., 2000). It is well known that caregiver characteristics, in particular level of stress and perceived burden, are important determinants of quality of care for the elderly. Caregiver dissatisfaction and distress have been previously associated with an increased risk of hospitalization and nursing home admission among care recipients (McFall and Miller, 1992; Shugarman et al., 2002). Identification of factors influencing caregiver attitudes is therefore crucial to design interventions aimed at promoting both patient and caregiver well being. Several studies have analysed determinants of caregiver attitudes and identified the presence of cognitive impairment and behavioural symptoms as the strongest factors associated with this outcome (Pearson et al., 1988; Livingston et al., 1996; Schneider et al., 1999; Rosenvinge et al., 1998). However, the association between caregiver attitudes and other patient characteristics has rarely been explored. In particular, the association between depression and caregiver attitudes has rarely been explored and available studies are limited by small sample sizes, or by recruiting older adults in particular settings (i.e. Emergency Department or mental health clinics), or with specific conditions (i.e. Parkinson's disease and dementia) (Scazufca et al., 2002; Sewitch et al., 2004; van Wijngaarden et al., 2004; Aarsland et al., 1999; Gallicchio et al., 2002; Meshefedjian et al., 1998). The objective of the present study is to explore this issue in a large population of older adults living in the community. To this aim we performed a cross-sectional analysis of data from the AdHOC study, which enrolls a large sample of community-dwelling elderly patients receiving home-care services in 11 European countries. 2. Methods For the present study we used a random sample of elderly patients admitted to the home-care programs in urban areas of 11 European countries, – from 2001 to 2003 – who participated to The AgeD in HOme Care (AdHOC) project (2001–2003), funded by the European Union. The main objective of The AdHOC Project was to identify a model of Home Care for the elderly through the analysis of the structural and organisational characteristics of Home-Care Services in different countries of Europe, along with the clinical and functional characteristics of
their clients. As described elsewhere (Carpenter et al., 2004), at each site, the sample was obtained by a computer driven randomisation of all subjects aged 65 years or more already receiving home-care services. When specific services (e.g., “integrated” or “social” only) were provided by different agencies, the sample reflected the overall proportion of older adults receiving the services of interest. Patients were assessed in the following urban areas: Prague (Czech Republic, n = 428), Copenhagen (Denmark, n = 466), Helsinki (Finland, n = 187), Amiens (France, n = 381), Nurnberg and Bayreuth (Germany, n = 607), Reykjavik (Iceland, n = 405), Monza (Italy, n = 412), Rotterdam (The Netherlands, n = 198), Oslo (Norway, n = 388), Stockholm (Sweden, n = 246), Maidstone and Ashford (United Kingdom, n = 289). 2.1. Data collection To accomplish the purpose of the AdHOC study, data were collected using the Minimum Data Set for Home Care (MDS-HC) assessment instrument, following the guidelines published in the MDS-HC manual (Morris et al., 1996). In Finland, France, Germany and Iceland assessments were conducted by agency personnel, in all other countries, they were conducted by research assistants recruited for the project. All received a standardised training program on how to complete the assessment. Patients invited to take part in the study were free to decline participation. Patient consent was obtained with assurance of data confidentiality and ethical approval for the study was obtained in all countries according to local regulations. 2.2. MDS-HC assessment data The MDS-HC contains over 350 data elements including socio-demographic variables, numerous clinical items about both physical and cognitive status, as well as all clinical diagnoses (Morris et al., 1996). In the MDS-HC are also included information about an extensive array of signs, symptoms, syndromes, and treatments being provided. The MDS is an instrument that has been developed in the United States, but studies have validated the MDS across different languages and countries (Sgadari et al., 1997; Morris et al., 1997). 2.2.1. Depression The Depression Rating Scale was used to evaluate the presence of depressive symptoms (Burrows et al., 2000) (items from E1a to E1i). Weighted kappa for items assessing depression (Section E1) was 0.61 (Morris et al.,
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1997). This scale has proven reliable for detecting depression among older adults and participants with a score ≥3 were diagnosed as depressed (Burrows et al., 2000). 2.2.2. Caregiver's attitudes The primary caregiver was defined as the family member, friend or neighbour (but not paid provider) who was most helpful to the participant and who he/she could most rely upon. It was not required that the caregiver lived with the participant, rather than he/she visited regularly or would respond to needs of the participant. The MDS-HC includes items which assess primary caregiver attitudes regarding subjective burden of the caregiving. These items report the presence or absence of (1) caregiver dissatisfaction (the caregiver is dissatisfied with the support received from family and friends) (item G2b) and (2) caregiver distress (the caregiver expresses feelings of distress, anger, or depression) (item G2c). Weighted kappa for items assessing informal support services (Section G) was 0.66 (Morris et al., 1997). These measures were already used in a study assessing the association between caregiver attitudes and patients outcomes (Shugarman et al., 2002).
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2.2.3. Covariates Clinical diagnoses were recorded by a study physician who gathered information from the patient and the general practitioner, performed a physical examination, a careful review of patient clinical documentation and previous medical history. The cognitive performance scale (CPS) was used to assess cognitive status (items B1a, B2a, C3a, H2g) (Hawes et al., 1995). Cognitive impairment was considered to be present for CPS score ≥2. Activities of daily living (ADL) were used to assess physical function and ADL disability was defined as the need of assistance in 1 or more of the following ADL: eating, dressing, transferring, mobility in bed, personal hygiene and toileting (items H2a, H2b and from H2e to H2i). Behavioural symptoms were present if the participant exhibited one or more of the following symptoms in the 3 days prior to assessment: wandering, verbally abusive, physically abusive, socially inappropriate behaviour and active resistance of care (items from E3a to E3e). Participants with less than 6 months of expected survival were defined terminally ill (item K8e). Hours of informal care were defined as hours of help for instrumental and personal activities of daily living received over the last 7 days from any informal caregiver (items G3a and G3b). Hours of formal care were defined as
Fig. 1. Prevalence of caregiver's dissatisfaction (upper panel) and caregiver's distress (lower panel) by country. CZ = Czech Republic, D = Germany, DK = Denmark, F = France, FIN = Finland, I = Italy, IS = Iceland, NL = The Netherlands, NO = Norway, S = Sweden, UK = United Kingdom.
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overall hours of assistance received from home-care services over the last 7 days (items from P1a to P1j). MDS items have been found to have excellent inter-rater and test–retest reliability when completed by nurses performing usual assessment duties (average weighted Kappa = 0.7) (Morris et al., 1997). 2.3. Study sample and statistical analysis From the initial sample of 4007 subjects, we excluded participants without caregiver (N = 420), those with missing data on presence of caregiver (N = 138), depression assessment (N = 30) and cognitive impairment (N = 4). This resulted in a sample size of 3415 participants. Baseline characteristics of study participants, according to presence of depression were compared using ANOVA analyses for normally distributed variables, nonparametric Kruskal–Wallis H tests for skewed variables, and chi-square analyses for dichotomous variables. Logistic regression models were used to evaluate the association between depression and caregiver attitudes providing crude and adjusted measures of association. Covariates in the final adjusted model included age, gender, site and those variables associated with depression at p ≤ 0.10 at the univariate analysis. Since previous publications have identified cognitive impairment and behavioural symptoms as strong predictors of caregiver attitudes (Pearson et al., 1988; Livingston et al., 1996; Schneider et al., 1999; Rosenvinge et al., 1998), subgroup analyses stratified on cognitive status and presence of behavioral symptoms were performed. Finally, additional logistic regression models were performed to evaluate whether or not the strength of the observed association between patient depression and caregiver attitudes increased with the number of depressive symptoms. All analyses were performed using SPSS for Windows version 10.0. 3. Results Mean age of study participants was 82.4 (Standard Deviation 7.3) years, and 2503 (73.3%) were women. Of the total sample, 430 participants (12.6%) presented with depression, 110 (3.2%) caregivers were dissatisfied and 256 (7.5%) distressed. As shown in Fig. 1, prevalence of caregiver dissatisfaction differed among study sites, ranging from 0.3% in Denmark and Iceland to 8.2% in France. Similarly, prevalence of caregiver distress differed among study sites, ranging from 1% in Sweden to 17.7% in Italy. Characteristics of the study population according to the presence of depression are summarized in Table 1.
Table 1 Characteristics of study population according to presence of depression a Characteristics
No. depression Depression p N = 2985 n = 430
Age, years (mean ± standard deviation) Female gender Living alone A flare up of a chronic or recurrent condition N of coexisting diseases (mean ± SD) Cognitive impairment b ADL disability Diseases Ischemic heart disease Peripheral vascular disease Stroke Hypertension Diabetes Congestive heart failure Parkinson's disease Cancer Osteoarthritis Chronic obstructive pulmonary disease Explicit terminal illness Presence of pain History of falls Any behavioural symptom Fecal incontinence Urinary incontinence Hours of formal care Hours of informal care
82.6 ± 7.3
81.3 ± 7.3
2180 (73.0) 1734 (58.1) 290 (9.7)
323 (75.1) 202 (47) 91 (21.2)
0.35 b0.001 b0.001
1.8 ± 1.4
2.4 ± 1.6
b0.001
822 (27.5) 1126 (37.7)
210 (48.8) 235 (54.8)
b0.001 b0.001
572 (19.2) 392 (13.1) 530 (17.8) 962 (32.2) 516 (17.3) 690 (23.1) 147 (4.9) 219 (7.3) 741 (24.8) 315 (10.6)
114 (26.5) 95 (22.1) 105 (24.4) 174 (40.5) 102 (23.7) 128 (29.8) 34 (7.9) 47 (10.9) 128 (29.8) 53 (12.3)
b0.001 b0.001 b0.001 0.001 0.001 0.003 0.01 0.01 0.03 0.26
24 (0.8) 1170 (39.6) 747 (25.1) 155 (5.2) 361 (12.1) 894 (30.0) 20.4 ± 64.1 22.2 ± 41.3
6 (1.4) 246 (57.5) 154 (36) 93 (21.6) 72 (16.8) 152 (35.5) 25.5 ± 63.4 37.0 ± 50.3
0.22 b0.001 b0.001 b0.001 0.01 0.02 0.15 b0.001
0.001
ADL = activities of daily living. a Defined as MDS depression rating scale ≥3. b Defined as cognitive performance scale score N2.
Compared with participants without depression, those depressed were slightly younger, less likely to live alone, had a higher prevalence of cognitive impairment, ADL disability, urinary and fecal incontinence, behavioural symptoms, a higher rate of falls and pain, and experienced more coexisting diseases, including ischemic heart disease, chronic heart failure, hypertension, peripheral vascular disease, stroke, diabetes, Parkinson's disease, osteoarthritis and cancer. In addition, depressed participants received more hours of informal care compared with non depressed participants, while hours of formal care, despite slightly higher among depressed participants, did not differ significantly between the study groups. Dissatisfaction was significantly more common among caregivers of depressed, compared with those of
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Table 2 Association between patient depression and caregiver's dissatisfaction
Total sample No depression (n = 2985) Depression (n = 430) Cognitive impairment No depression (n = 822) Depression (n = 210) No cognitive impairment No depression (n = 2163) Depression (n = 220) Behavioral symptoms No depression (n = 155) Depression (n = 93) No behavioral symptoms No depression (n = 2830) Depression (n = 337)
Prevalence of caregiver dissatisfaction N (%)
Crude OR (95% CI)
Adjusted⁎ OR (95% CI)
78 (2.6%) 32 (7.4%)
1 (reference) 3.00 (1.96–4.58)
1 (reference) 1.84 (1.12–3.03)
42 (5.1%) 18 (8.6%)
1 (reference) 1.74 (0.98–3.09)
1 (reference) 1.34 (0.68–2.65)
36 (1.7%) 14 (6.4%)
1 (reference) 4.01 (2.13–7.56)
1 (reference) 2.98 (1.41–6.33)
12 (7.7%) 18 (19.4%)
1 (reference) 2.88 (1.32–6.29)
1 (reference) 3.82 (1.25–11.67)
66 (2.3%) 14 (4.2%)
1 (reference) 1.82 (1.01–3.27)
1 (reference) 1.43 (0.75–2.70)
⁎Adjusted for age, gender, living alone, a flare up of a chronic or recurrent condition, number of coexisting diseases, ADL disability, cognitive impairment, ischemic heart disease, congestive heart failure, hypertension, peripheral artery disease, stroke, diabetes, osteoarthritis, cancer, Parkinson's disease, history of falls, urinary incontinence, fecal incontinence, presence of pain, behavioral symptoms, hours of informal care and site.
non depressed patients (7.4% vs. 2.6%; p = b0.001). After adjusting for potential confounders, which included age, gender, living alone, a flare up of a chronic or recurrent condition, number of coexisting diseases, ADL disability, cognitive impairment, ischemic heart disease, congestive heart failure, hypertension, peripheral artery disease, stroke, diabetes, osteoarthritis, cancer, Parkinson's disease, history of falls, urinary incontinence, fecal incontinence, presence of pain, behavioural symptoms, hours of
informal care and site, this result was still significant (Odds Ratio: 1.84; 95% Confidence Interval: 1.12–3.03). When we stratified the analysis by cognitive status and presence of behavioural symptoms, the association of patient depression and caregiver dissatisfaction (Table 2) seemed stronger in participants without cognitive impairment (OR: 2.98; 95% CI: 1.41–6.33) than those with cognitive impairment (OR: 1.34; 95% CI: 0.68–2.65), and in participants with behavioural
Table 3 Association between patient depression and caregiver's distress
Total sample No depression (n = 2985) Depression (n = 430) Cognitive impairment No depression (n = 822) Depression (n = 210) No cognitive impairment No depression (n = 2163) Depression (n = 220) Behavioural symptoms No depression (n = 155) Depression (n = 93) No behavioural symptoms No depression (n = 2830) Depression (n = 337)
Prevalence of caregiver distress N (%)
Crude OR (95% CI)
Adjusted⁎ OR (95% CI)
175 (5.9%) 81 (18.8%)
1 (reference) 3.73 (2.80–4.97)
1 (reference) 2.41 (1.72–3.39)
101 (12.3%) 51 (24.3%)
1 (reference) 2.29 (1.57–3.34)
1 (reference) 1.97 (1.26–3.08)
74 (3.4%) 30 (13.6%)
1 (reference) 4.46 (2.84–6.99)
1 (reference) 3.01 (1.76–5.13)
26 (16.8%) 33 (35.5%)
1 (reference) 2.75 (1.51–5.00)
1 (reference) 2.73 (1.27–5.85)
149 (5.3%) 48 (14.2%)
1 (reference) 2.99 (2.11–4.23)
1 (reference) 2.19 (1.47–3.24)
⁎Adjusted for age, gender, living alone, a flare up of a chronic or recurrent condition, number of coexisting diseases, ADL disability, cognitive impairment, ischemic heart disease, congestive heart failure, hypertension, peripheral artery disease, stroke, diabetes, osteoarthritis, cancer, Parkinson's disease, history of falls, urinary incontinence, fecal incontinence, presence of pain, behavioural symptoms, hours of informal care and site.
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symptoms (OR: 3.82; 95% CI: 1.25–11.67) than those without behavioural symptoms (OR: 1.43; 95% CI: 0.75–2.70). However, when we formally tested the interaction between cognitive impairment and depression and between behavioural symptoms and depression, we did not found any significant result ( p = 0.33 and p = 0.58, respectively). Similarly, as shown in Table 3, distress was significantly more common among caregivers of depressed patients, compared with those of non depressed patients (18.8% vs. 5.9%; p b 0.001). This result remained statistically significant after adjusting for all potential confounder (OR 2.41; 95% CI: 1.72–3.39). After stratification of the sample by cognitive status and presence of behavioural symptoms we still found significant results. Participants living alone received a lower number of hours of informal care compared to those not living alone (7.6 ± 17.8 vs. 45.7 ± 54.9, p b 0.001) and caregivers of participants living alone were less dissatisfied (1.5% vs. 5.4%, p b 0.001) and distressed (3.1% vs. 13.3%, p b 0.001) than those of participants not living alone. However, the association of patient depression and caregiver dissatisfaction and distress was consistent after exclusion of participants living alone (dissatisfaction: OR: 2.14; 95% CI: 1.18–3.88; distress OR: 1.89; 95% CI: 1.26–2.82). Figs. 2 and 3 report the association of caregiver dissatisfaction and distress with number of depressive symptoms. The Odds Ratio for presence of both caregiver dissatisfaction and distress progressively increased as the
Fig. 2. Odds Ratio and 95% confidence intervals for caregiver's dissatisfaction by number of depressive symptoms. Analysis adjusted by age, gender, living alone, a flare up of a chronic or recurrent condition, number of coexisting diseases, ADL disability, cognitive impairment, ischemic heart disease, congestive heart failure, hypertension, peripheral artery disease, stroke, diabetes, osteoarthritis, cancer, Parkinson's disease, history of falls, urinary incontinence, fecal incontinence, presence of pain, behavioural symptoms, hours of informal care and site.
Fig. 3. Odds Ratio and 95% confidence intervals for caregiver's distress by number of depressive symptoms. Analysis adjusted by age, gender, living alone, a flare up of a chronic or recurrent condition, number of coexisting diseases, ADL disability, cognitive impairment, ischemic heart disease, congestive heart failure, hypertension, peripheral artery disease, stroke, diabetes, osteoarthritis, cancer, Parkinson's disease, history of falls, urinary incontinence, fecal incontinence, presence of pain, behavioural symptoms, hours of informal care and site.
number of participant depressive symptoms increased ( p for trend 0.01 and b 0.001, respectively). 4. Discussion The present study shows that among patients in home care in Europe, depression is associated with caregiver distress and dissatisfaction. The strength of the association increases as number of depressive symptoms increased and it is consistent independently of cognitive status and presence of behavioural symptoms. Previous studies have shown that caregiver's distress is associated with physical, social, and financial consequences, social isolation, and direct (e.g., medications) and indirect (e.g., loss of earnings due to relinquishing of paid work) financial costs (Livingston et al., 1996; Schulz and Beach, 1999). Caregivers are crucial for maintaining older adults in the community, and caregiver distress and dissatisfaction were associated with higher use of services (including increased rate of hospitalization and nursing home admission) and worsening health status of care recipients (McFall and Miller, 1992; Shugarman et al., 2002). Therefore, understanding factors associated with caregiver attitudes is important to study interventions aimed to promote patient and caregiver well being and reduce costs (Selwood et al., 2007). The present study extends to a large population of older adults in home care in Europe findings of previous studies suggesting the presence of a relation between depressive symptoms and caregiver's attitudes. Scazufca et al. (2002)
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found an association between caregiver burden and patient depression in a group of 82 older adults in two outpatients' mental health clinics. This study was limited by the small sample size and by the lack of relevant confounders (including comorbid conditions and cognitive function) that may have influenced results. Another cross-sectional study of 193 family caregivers of seniors treated in Emergencies Department provided support for a relationship between patient depression and mental health and quality of life of their family caregivers (Sewitch et al., 2004). Finally, van Wijngaarden et al. (2004) examined the caregiving consequences of 260 spouses and relatives of depressed adults (mean age 45 years), showing that caregivers of depressed patients mainly report consequences related to the interpersonal aspects of their relationship, such as worrying, feeling burdened, and interpersonal stress. In addition, this study demonstrated that patient depression affects daily routines and role functioning, poses a stress on interpersonal relations, and leads to symptoms of distress in spouses and children. Finally, a higher rate of distress was associated with patient depression among caregivers of persons with Parkinson's disease (Aarsland et al., 1999) and dementia (Gallicchio et al., 2002; Meshefedjian et al., 1998). The association between patient depression and caregiver distress may be due to a number of factors. First, depressed patients may require more help in performing everyday basic tasks, including basic and instrumental activities of daily living than non depressed patients (Penninx et al., 2000), therefore increasing caregiver burden. In the present study, we adjusted the analyses for the extent of help received in the last 7 days from any informal caregiver, but we did not collect the exact time the primary caregiver spent with the patient. Therefore we cannot completely rule out the hypothesis that our findings may be related to a heavier burden of care. Second, depression is often accompanied by considerable social isolation and withdrawal from those activities and individuals that would be essential in providing emotional support and assistance (Blazer, 2003). This isolation may involve the caregiver and therefore result in an increased rate of distress and dissatisfaction. Third, it is now well established that being a caregiver can produce psychological benefits, which include an enhanced caregiver–care recipient relationship (Amirkhanyan and Wolf, 2003). Caregivers of patients with depression may lack this kind of ‘rewords’. An alternative explanation to our findings is that the link between depression and caregiver attitudes is caused by unmeasured confounders. Although the current analyses were adjusted for many potential confounders residual confounding is always possible.
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Finally, a possible explanation for our findings is that depression could be a consequence of caregiver distress and dissatisfaction rather than the cause of it. Indeed the cross-sectional design of the present study does not allow to define the temporal relationship between the onset of depression and caregiver distress and dissatisfaction. In the present study the association of both caregiver distress and dissatisfaction with patient's depression seems stronger among cognitively intact rather than cognitively impaired participants. This finding can be related to the fact that caregivers of cognitively impaired subjects may have already experienced a loss of ‘affective’ relationship with care recipients and therefore their attitudes are influence by care-recipients mood problems to a lower extent than those caregivers of cognitively intact subjects that still preserve this relationship. However, it is necessary to mention that we did not find any significant interaction between cognitive impairment and depression and therefore the effect of cognition on the association between caregiver attitudes and patient's depression should be tested and confirmed in larger studies. The variables we used to assess caregiver attitudes explore two different types of burden: the variable assessing caregiver dissatisfaction may be considered a measure of interpersonal burden, while the one assessing caregiver distress may be considered a measure of personal burden. Interpersonal burden is a reflection of the problems the caregiver has with the impaired individual's condition, whereas personal burden reflects the caregiver's appraisal of limitations on the caregiver's activities as a result of providing care to the impaired person (Shugarman et al., 2002). For this reason it should not surprise the presence of differences in the prevalence of these two measures within countries. The present study has several limitations. First, results of the present study are based on elderly receiving home care in Europe, cannot be extrapolated to younger subjects and to older adults living in other settings. Second, although the MDS-HC is a standardized, comprehensive assessment instrument, the recording of depressive symptoms is not its specific focus. Depressive symptoms were assessed based on clinical records, consultation of primary caregivers and patient clinician, but also on independent observation and conversation with participants (Morris et al., 1996). Therefore, the potential for over- or underestimation of symptoms, depending on the training of study personnel and time spent with participants, remains a concern and it may explain differences observed in studies assessing reliability of the MDS Depression Rating Scale (Burrows et al., 2000; Snowden et al., 2003). Finally, we did not collect data on caregiver
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characteristics, including age, gender, comorbidity, distance from care recipients (if not living with them) which may influence their attitudes. In conclusion the present study shows that patient depression is associated with caregiver distress and dissatisfaction and the strength of this association increases as the number of depressive symptoms increases. More research is required to confirm these findings in longitudinal studies and to establish if treatment of depression in older adults can influence caregiver attitudes. Future studies on caregiver attitudes should consider multiple complex characteristics of care recipients including depression. Role of the funding source The AdHOC project was founded by a grant from the Fifth Framework Programme on “Quality of Life and Management of Living Resources” of the European Union. None of the authors have any financial interests related to this article. None have conflicts of interest, financial arrangements, or consultantships with a company whose product is associated with the submitted manuscript. The sponsor has no further role in the study. The authors retained complete independence in scientific investigation and reporting. Conflict of interest None of the authors has actual or potential conflict of interest including any financial, personal or other relationships with other people or organizations within three (3) years of beginning the work submitted that could inappropriately influence, or be perceived to influence, their work.
Acknowledgements This large and complex study required very substantial commitment from many staff within the participating research organisations and health and social care services of each country. It would not have been possible without their collaboration in the face of many frustrations and time consuming tasks. Their contribution is gratefully acknowledged by lead investigators of the study. The Partners in each country are Fellows of interRAI, an international research collaboration whose general membership contributed critical advice and support through all stages of the project. References Aarsland, D., Larsen, J.P., Karlsen, K., Lim, N.G., Tandberg, E., 1999. Mental symptoms in Parkinson's disease are important contributors to caregiver distress. Int. J. Geriatr. Psychiatry 14, 866–874. Amirkhanyan, A.A., Wolf, D.A., 2003. Caregiver stress and noncaregiver stress: exploring the pathways of psychiatric morbidity. Gerontologist 43, 817–827. Blazer, D.G., 2003. Depression in late life: review and commentary. J. Gerontol., Ser. A, Biol. Sci. Med. Sci. 58, 249–265.
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