Official journal of the Pacific Rim College of Psychiatrists

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Asia-Pacific Psychiatry ISSN 1758-5864

ORIGINAL ARTICLE

Association between caregiver depression and individual behavioral and psychological symptoms of dementia in Taiwanese patients Si-Sheng Huang1 MD, Yi-Cheng Liao1 MD & Wen-Fu Wang2 MD 1 Department of Psychiatry, Changhua Christian Hospital, Changhua, Taiwan (R.O.C.) 2 Department of Neurology, Changhua Christian Hospital, Changhua, Taiwan (R.O.C.)

Keywords behavioral and psychological symptoms of dementia, caregiver, dementia, depression, Taiwanese Correspondence Si-Sheng Huang, MD, Department of Psychiatry, Changhua Christian Hospital, No.135, Nanhsiao Street, Changhua 500, Taiwan. Tel: +886 4 7238595 ext. 7160 Fax: +886 4 7251004 Email: [email protected] Received 17 January 2014 Accepted 14 January 2015 DOI:10.1111/appy.12175

Abstract Introduction: The aim of this study was to investigate caregiver depression associated with neuropsychiatric symptoms in Taiwanese people. Methods: A cross-sectional design was used in this study. Two hundred seventy-six pairs of patients with dementia and their caregivers who visited the memory clinic of a general hospital from July 2001 to October 2008 were recruited. Caregiver depression was evaluated with the Center for Epidemiologic Studies Depression Scale (CES-D); the behavioral and psychological symptoms of dementia were evaluated using the Neuropsychiatric Inventory. Demographic data of the patients and caregivers, including cognitive functions and clinical dementia ratings, were collected. In addition to descriptive statistics, we examined the relationship between each parameter and caregiver depression using Pearson correlation, independent t-test, or analysis of variance. Results: The results showed a statistically significant positive correlation between the total Neuropsychiatric Inventory score and CES-D score (r = 0.345, P < 0.001) in the bivariate analyses. For individual behavioral and psychological symptoms of dementia, agitation/aggression, anxiety, nighttime behavior disturbances, irritability/lability, and hallucinations were the five leading symptoms significantly associated with caregiver depression (CES-D). Discussion: Carefully managing these symptoms is likely to reduce depression in dementia caregivers.

Introduction Previous studies have reported rates of caregiver depression of around 30–83% (Buckwalter et al., 1999; Clark, 2002; Schulz et al., 2008; Huang et al., 2012). In Taiwan, by the end of 2012, people aged 65 years and older numbered 2.6 million, or 11.2% of Taiwan’s total population (Ministry of the Interior, Taiwan, 2013). According to the studies of Liu et al. (1995) and Lin et al. (1998), the prevalence of dementia in people aged 65 years and older in Taiwan is 2–3.7%, and the people with dementia is estimated to be 50,000–110,000, or even higher. Approximately 80% of the dementia patients are cared for by family members in Taiwan, a percentage similar to that in

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Western countries (Haley, 1997; Fuh et al., 1999). Fuh et al. (1999) reported that 56.6% of the main dementia caregivers in Taiwan spend over 8 hours daily on providing care. For dementia caregivers, the associative factors of caregiver depression have been reported to include female gender (Mahoney et al., 2005), spousal relationship (Covinsky et al., 2003; Zivin and Christakis, 2007), living with the patient (Beeson et al., 2000; Clyburn et al., 2000; Mahoney et al., 2005), relatively poor health status (Beeson et al., 2000; Clyburn et al., 2000), and higher caregiver distress (Beeson et al., 2000; Clyburn et al., 2000; Takahashi et al., 2005). For the dementia patients, the associated factors include activities of daily living (ADL) dependence (Covinsky et al., 2003; Mahoney

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Caregiver depression and dementia

et al., 2005) and more behavioral disturbance (Hinton et al., 2003; Mahoney et al., 2005). There is strong evidence that neuropsychiatric symptoms of dementia patients influence depression in caregivers, and these behavioral and psychological symptoms of dementia (BPSD) may be more influential than the severity of cognitive impairment (Donaldson et al., 1997; Clyburn et al., 2000). It would be useful to clinicians caring for caregivers to be able to identify dementia patient groups in which individual BPSD needs to be targeted to treat clinically. Therefore, to better understand the association between individual BPSD and caregiver depression is valuable, and the articles dedicated to this topic are still rare. The aim of this study was thus to investigate caregiver depression associated with individual BPSD in Taiwanese people with dementia. The associations between caregiver depression and patient as well as caregiver characteristics were also analyzed.

Methods Participants and study design This study used a cross-sectional design. The diagnostic criteria for dementia were established according to the Diagnostic and Statistical Manual, 4th Edition (American Psychiatric Association, 1994). In total, 276 patients with dementia and 276 caregivers who visited the memory clinic of the Changhua Christian Hospital (a medical center in central Taiwan) from July 2001 to October 2008 were recruited. The inclusion criteria for caregivers were (i) a relative (older than 18 years) who cares for the individual at least 4 hours per day, (ii) being the primary caregiver and having intimate information of the patient over time, and (iii) agreeing to be interviewed. This research was approved by the institutional review board of the medical center. The memory clinic team of the Changhua Christian Hospital was established in 2001. Patients referred to the clinic have been diagnosed with dementia by clinicians and have been judged to require further evaluation and management. The clinic offers multidisciplinary evaluation, psychoeducation, and discussion with families about the further treatment plans for the people with dementia. The patient’s cognitive function, BPSDs, and basic and instrumental activities of daily living (ADL and IADL, respectively) were assessed by specific duty, well-trained, and qualified psychologists. The hospital has a standardized objective, evidence-based procedure to authorize psychologists to provide clinical services consistent with their

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qualifications. The trained researchers verbally administered the instruments to the subjects and recorded the answers according to standardized procedure of each measurement. Caregivers’ background and the evaluation of their depression were collected at a single visit to the memory clinic. Assessment of family caregivers We evaluated caregiver depression with the Center for Epidemiologic Studies Depression Scale (CES-D) (Radloff, 1977). Higher scores (16 or above) indicate that the participant is “at risk” of depression or in need of treatment. The CES-D is a 20-item, self-reported index of depressive symptoms. The items of CES-D were derived from previously validated depression scales and were selected to represent the major symptom components of depression that had been identified in factor analytic studies. It is a reliable and validated scale for screening depression symptoms (Kim et al., 2011). In a Taiwanese study, with a cutoff point of 16 in the community sample, the sensitivity and specificity were 92.0% and 91.0% (Chien and Cheng, 1985). Caregiver burden was surveyed with the Neuropsychiatric Inventory Caregiver Distress Scale (NPI-D) (Kaufer et al., 1998). This is a scale for assessing the impact of BPSD on caregiver distress. After rating each symptom domain of the Neuropsychiatry Inventory (NPI), caregivers rate their emotional impact on a scale from 0 (not at all distressing) to 5 (extremely distressing). Assessment for patients with dementia The patient’s BPSD was assessed using the NPI (Cummings et al., 1994; Cummings, 1997), which was developed to measure psychopathology in people with dementia. The NPI includes 12 symptoms: delusions, hallucinations, agitation/aggression, dysphoria/ depression, anxiety, euphoria/elation, apathy/ indifference, disinhibition, irritability/lability, aberrant motor behavior, nighttime behavioral disturbances, and appetite and eating abnormalities. The caregiver rated the frequency and severity of each symptom using scores of 0–4 for frequency and scores of 0–3 for severity. The NPI score for each BPSD was the product of the frequency and severity subscores (frequency multiplied by the severity). The total NPI score ranged from 0 to 144. The Cronbach’s alpha coefficient of the Chinese version of the NPI was 0.76. The test–retest reliabilities of frequency, severity, and caregiver distress scores were significantly correlated, with the

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S.-S. Huang et al.

overall correlations being 0.85 for frequency (P < 0.001), 0.82 for severity (P < 0.001), and 0.79 (P < 0.001) for distress (Fuh et al., 2001). We assessed patients’ depressive symptoms with the geriatric depression scale (GDS) (Yesavage et al., 1983); this scale was specially designed for the aged, and although it was originally created for English-language studies, a Chinese-translated version was developed with good reliability and validity (Liao et al., 1995). Additionally, we also evaluated the performance of ADL with the Barthel index (Collin et al., 1988) and instrumental ADLs with the IADL scale (Lawton and Brody, 1969). Both ADL and IADL scales have been widely used in the Taiwanese population with good reliability (Dai and Lou, 1996). Patients’ clinical dementia stages were assessed with the clinical dementia rating scale (CDR) (Hughes et al., 1982), and cognitive function with the Chinese version of the Cognitive Abilities Screening Instrument (CASI, C-2.0) (Lin et al., 2002). The CASI (Teng et al., 1994) includes items similar or identical to those used in the mini-mental state examination (MMSE) (Folstein et al., 1975), the modified MMSE (Teng and Chui, 1987), and the Hasegawa dementia screening scale (Hasegawa, 1983). The CASI can be administered in 20 minutes, and its total score ranges from 0 to 100. The instrument’s cutoff scores, based on different educational levels, were also calculated and showed good sensitivity and specificity (Lin et al., 2002). The MMSE score in this study was derived from part of the CASI score. In addition to CDR, we calculated the Clinical Dementia Rating Scale Sum of Boxes (CDR-SOB) score, which is calculated by summing each of the domain box scores, with scores ranging from 0 to 18. Statistical analyses We used descriptive statistics to characterize the study population. Statistical analysis was performed using SPSS for Windows, version 17.0 (SPSS Inc., Chicago, IL, USA). In addition to descriptive statistics, the relationships between dementia patients’ characteristics and caregiver depression, as well as caregivers’ characteristics and caregiver depression, were tested using the Pearson correlation, independent t-test and analysis of variance. We determined the factors associated with caregiver depression by using multiple linear regression analyses, in which the variables that reached statistical significance in the bivariate analyses were entered as independent variables. For the independent variables, we used the enter method for multiple linear regression analyses. We subsequently analyzed the association for caregiver depression

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Caregiver depression and dementia

(CES-D) and individual BPSD using the independent t-test. Ranking of the leading neuropsychiatric symptoms was based on an effect size measure with Cohen’s d for the t-tests. A statistical significance level of 0.05 was set for all analyses.

Results Characteristics of dementia patients Of the 276 patients with dementia, the mean age was 79.70 ± 7.20 years (±SD); 68.5% were female. The mean CASI score of the patients was 41.95 ± 24.33, the mean MMSE score was 13.56 ± 6.69, and the predominant clinical stage of dementia was mild dementia (CDR = 1) (Table 1). Characteristics of caregivers Of the 276 caregivers, the mean age was 54.11 ± 13.82 years; 52.5% were female; the most common caregiver relationship to the dementia patient was child (48.2%); and educational level was 9.68 ± 4.50 years. The mean total NPI-D score of the caregivers was 8.89 ± 10.46 (range, 0–50). The mean CES-D score was 16.22 ± 10.41, and 43.8% of the caregivers (121 of 276) had equal or higher than 16 on the CES-D scores (Table 1). Correlation between characteristics and caregiver depression Table 2 shows the correlation between characteristics of patients and caregiver depression. Poorer performance of IADL and ADL, lower CASI and MMSE scores, higher NPI scores, and higher GDS scores had statistically significant correlations with caregiver depression. Significantly higher caregiver depression levels were found when the CDR of the patient was 3. Although there was a raising trend of caregiver depressive level from stage 0.5 to 3, the level of depression was decreased when the CDR was 4. Further, the caregiver depression was higher in the vascular dementia (VaD) patient group (P = 0.055). Table 3 shows the correlation between the characteristics of caregivers and caregiver depression. Female gender (t = −2.699, P = 0.007) and higher NPI-D scores (r = 0.446, P < 0.001) had a statistically significant correlation with caregiver depression. According to the bivariate analyses, patients’ IADL, ADL, CASI, MMSE, CDR, CDR-SOB, NPI total score, GDS, and caregiver’s gender and NPI-D were significantly corre-

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Table 1. Characteristics of patients and their caregivers, n, mean ± SD (range) Parameters

Patients

Caregivers

Number Age, years Gender (male/female) (%) Education, years Marital status, yes/no (%) Diagnosis (AD/VaD/others) (%) CASI (range: 0–100) MMSE (range: 0–30) CDR (0.5/1/2/3/4) (range: 0–5) CDR-SOB (range: 0–18) GDS (range: 0–30) NPI score, (range: 0–144) Relationship of caregiver to patient (%) (spouse/child/child-in-law/others) NPI-D score, (range: 0–60) CES-D score, (range: 0–60)

276 79.70 ± 7.20 (57–100) 87/189 (31.5/68.5) 3.65 ± 4.37 (0–16) — 167/70/39 (60.5/25.4/14.1) 41.95 ± 24.33 (0–88.5) 13.56 ± 6.69 (0–26) 55/106/79/27/9 7.82 ± 4.51 11.27 ± 8.11 (0–30) 20.63 ± 20.55 (0–99) — — —

276 54.11 ± 13.82 (23–90) 131/145 (47.5/52.5) 9.68 ± 4.50 (0–18) 247/29 (89.5/10.5) — — — — — — — 80/133/53/10 (29/48.2/19.2/3.6) 8.89 ± 10.46 (0–50) 16.22 ± 10.41 (0–53)

AD, dementia of Alzheimer’s type; CASI, Cognitive Abilities Screening Instrument; CDR, Clinical Dementia Rating Scale; CDR-SOB, Clinical Dementia Rating Scale Sum of Boxes score; CES-D, Center for Epidemiologic Studies Depression Scale; GDS, Geriatric Depression Scale; MMSE, mini-mental state examination; NPI, Neuropsychiatry Inventory; NPI-D, Neuropsychiatric Inventory Caregiver Distress Scale; VaD, vascular dementia.

lated with CES-D. Since the collinearity between CASI and MMSE, CDR and CDR-SOB showed high correlation, we selected CASI, CDR-SOB, and other significant variables to be entered into the regression analyses. The results are presented in Table 4. Relationship between individual BPSD and caregiver depression Table 5 shows the association between individual BPSD and caregiver depression (CES-D). For individual BPSD, agitation/aggression (Cohen’s d = 0.59), anxiety (Cohen’s d = 0.49), nighttime behavior disturbances (Cohen’s d = 0.46), irritability/lability (Cohen’s d = 0.41), and hallucinations (Cohen’s d = 0.38) were the five leading symptoms significantly associated with caregiver depression.

Discussion In this study, 43.8% of the dementia caregivers were at risk of depression, which is higher than the prevalence of depression in the general population (Jou and Cheng, 2007; Hawthorne et al., 2008). To our knowledge, this study is the first research that has focused on the impact of individual BPSD to caregiver depression in a Taiwanese population. This is important for clinical practice and providing information for clinicians in treating BPSD and reducing caregiver depression. The rate of depression found in our clinic-based study was similar with rates found by Schulz et al. (40.8%) and Epstein-Lubow et al. (2012) (43.2%), which also

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recruited subjects mainly from medical clinics, and higher than those reported in community-based studies, such as those of Hinton et al. (2003) (29%), Covinsky et al. (2003) (32%), and Mahoney et al. (2005) (10.5%). This finding indicates that the negatively emotional impact on caregivers who visit the medical clinic may be higher than that on caregivers in the community. Regarding individual BPSD, the five leading symptoms significantly associated with caregiver depression according to the effect size measurement were agitation/aggression, anxiety, nighttime behavior disturbances, irritability/lability, and hallucinations. In contrast, the NPI-D evaluation of caregiver distress and burden of the same population yielded the following ranking of caregiver distress subscores for individual BPSD: agitation/aggression, delusion, nighttime behavior disturbances, irritability/lability, and anxiety. Although caregiver distress was highly positively correlated with caregiver depression, the NPI-D and CES-D scores of each BPSD showed inconsistent importance. For example, delusions had the second highest mean NPI-D score (2.80 ± 1.82), whereas it had the mean CES-D score for caregivers of 18.12 ± 10.31, which was only the ninth highest score among the 12 BPSD and only showed a weak association (P = 0.015) with caregiver depression (CES-D). Moreover, anxiety had only the fifth highest mean NPI-D score (2.60 ± 1.72), whereas it had a CES-D score for caregivers of 19.51 ± 10.96, which was the second highest score among the 12 BPSD and showed strong association (P < 0.001) with CES-D. Yet

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Caregiver depression and dementia

Table 2. Correlation between characteristics of dementia patients and caregiver depression (CES-D), mean ± SD

Table 3. Correlation between characteristics of caregivers and caregiver depression, mean ± SD

Demographics of patients

CES-D

Demographics of caregiver

CES-D

r/t/F

Age (years) Education (years) Number of children Gender Male Female Environment Live alone Live with family Duration of illness (years) Diagnosis AD VaD Others IADL ADL CASI score MMSE score CDR-SOB CDR 0.5 1 2 3 4 Behavioral disturbance (total NPI score) GDS score

— — —

0.027 0.052 0.058

0.657† 0.402† 0.346†

— —

−0.065 −0.018

0.308† 0.776† 0.007‡

0.633

0.527‡

14.45 ± 9.49 17.88 ± 10.98

−2.699

16.82 ± 10.51 15.94 ± 10.38

0.801‡

−1.078

0.282‡

15.74 ± 10.51 16.28 ± 10.42

0.252

13.59 ± 9.87 16.40 ± 10.44

0.018

0.847†

0.391§

0.055§

16.44 ± 10.64 15.37 ± 9.77 17.25 ± 11.08 20.40 ± 13.28 —

1.006

2.932

Age (years) Education (years) Gender Male Female Marital status Single Married Relationship to the patient Spouse Child Child-in-law Others NPI-D

0.446

Association between caregiver depression and individual behavioral and psychological symptoms of dementia in Taiwanese patients.

The aim of this study was to investigate caregiver depression associated with neuropsychiatric symptoms in Taiwanese people...
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