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Assessment of behavioral and psychological symptoms of dementia by family caregivers
Archives of Gerontology and Geriatrics 52 (2011) 60–65
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Assessment of behavioral and psychological symptoms of dementia by family caregivers Yam-Ting Kwok a, Chin-Ying Chen b, Ming-Jang Chiu c, Li-Yu Tang d, Kai-Kuen Leung b,* a
Department of Neurology, Far Eastern Memorial Hospital, Nan-Ya S. Rd., Sec.2 Pan-Chiao, Taipei, Taiwan, ROC Department of Family Medicine, National Taiwan University Hospital, Chung-Shan South Road 7, Taipei 10016, Taiwan, ROC c Department of Neurology, National Taiwan University Hospital and College of Medicine, Chung-Shan South Road 7,Taipei 10016, Taiwan, ROC d National Taipei College of Nursing, National Yang-Ming University, No. 365, Ming Te Road, Peitou, Taipei 112, Taiwan, ROC b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 2 June 2009 Received in revised form 20 January 2010 Accepted 29 January 2010 Available online 5 March 2010
This study was designed to test the performance and related factors of a self-administered instrument in assessing behavioral and psychological symptoms of dementia (BPSD) by family caregivers. We recruited 173 patients with dementia and major caregivers from two neurological clinics. Information about clinical diagnosis, the Mini Mental State Examination (MMSE), the Clinical Dementia Rating (CDR), the Dementia Behavior Disturbance Inventory (DBDI), and global caregivers’ strain were collected from interview and chart review. We found that DBDI has acceptable construct validity and good internal consistency reliability. BPSD was more frequently found in patients with advanced dementia, poor cognitive function and highly correlated to caregivers’ strain. Multivariate analysis revealed that female patients and caregivers, advanced CDR stages, patient–caregiver relationship, types of dementia and MMSE score were related to the increase of frequency and disturbance index of DBDI. We concluded that BPSD could be evaluated by family caregivers using a self-administered instrument. Further study is indicated to clarify how caregiver characteristics affect the report of behavioral symptoms, and its clinical importance. ß 2010 Elsevier Ireland Ltd. All rights reserved.
Keywords: Dementia Caregiver Behavioral and psychological symptoms Caregiver strain Alzheimer’s disease Rating scale
1. Introduction Behavioral and psychological symptoms of dementia (BPSD) is an umbrella term that describes an array of symptoms found in patients with dementia (Finkel et al., 2000). These symptoms determine prescription of medications, institutionalization (Steele et al., 1990; Gaugler et al., 2000; Smith et al., 2000; Yaffe et al., 2002; Scarmeas et al., 2007), caregivers’ strain and burden (Matsumoto et al., 2007), and cost of care (Murman et al., 2002). For clinical and research purposes, BPSD are mostly assessed according to the observation of family caregivers, professional caregivers, physicians, and sometimes self-reported by patients with early dementia. Of the above information sources, observation from family caregivers is worth further notice. For patients living at home, family caregivers are the most important and valuable source of information. In medical clinics, physicians also rely on information from family caregivers because information collected directly from patients with dementia may be invalid, and communication may be impossible in patients with profound
* Corresponding author. Tel.: +886 2 2312 3456x66827; fax: +886 2 2311 68674. E-mail address: [email protected] (K.-K. Leung). 0167-4943/$ – see front matter ß 2010 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.archger.2010.01.021
dementia. Instruments have been developed to assess neuropsychiatric symptoms such as the BEHAVE-AD and Neuropsychiatric Inventory (NPI). Although these instruments have proven validity, reliability, and applicability in research and clinical settings, the collection of data involves time-consuming interviews with caregivers. Another stream of research focused on the development of self-administered instrument rated by caregivers, such as the Caregiver-administered NPI (CGA-NPI) (Kang et al., 2004), and Caretaker Obstreperous Behavior Rating Scale (COBRA) (Duachman et al., 1992). The above self-administered instruments provided an option for the assessment of BPSD at busy clinics. Since behavioral symptoms are closely related to culture and society (Chow et al., 2000, 2002; Sink et al., 2004), instruments developed by Western countries may not be directly applied to Chinese population. In response to such a need, a DBDI was developed to assess behaviors important to care giving for professional and family caregivers. Behavior items were generated from behavioral patterns identified from focus group interviews with family and professional caregivers, previous research on local population, and clinical experiences of the authors. The DBDI was designed to identify behaviors from all stages of dementia; behavioral problems that are common and possibly amendable; behaviors with major impact on caregivers; and behaviors that can
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be observed and rated by family and professional caregivers. The first version of the DBDI has 72 items grouped into 12 domains and was tested in a group of institutional patients and their professional caregivers. Initial validation and item reduction yielded a 48-item version with good internal reliability, test– retest reliability, and construct validity (Tang et al., 2005). In the present study, we tested the applicability and psychometric properties of the 48-item DBDI rated by family caregivers of patients with dementia and evaluated the relationship between BPSD, patients’ and family caregivers’ characteristics, and caregiver strain for patients of dementia living in the community.
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2.5. Statistical analysis
2. Subjects and methods
We used SPSS 11 for Windows in our statistical analysis. All data first underwent descriptive analysis. Exploratory factor analysis was used for evaluating the frequency and disturbance scales of the DBDI. Different factoring and axis rotation methods were tried until the best result was obtained. Number of factors was determined by applying the criteria of eignvalue, the scree test, and parallel analysis. ANOVA and Pearson Product Moment Correlation were employed to analyze the relations between variables. Backward stepwise multiple regression was utilized to identify a set of variables which can best explain the variations in the frequency and disturbance scales of the DBDI.
2.1. Subjects
3. Results
Patients with dementia were recruited from two neurology outpatient clinics (one memory clinic and one neurology clinic) at two medical centers from 2006 to 2007. Inclusion criteria included a diagnosis of dementia made by neurologists and followed up at the same clinic for more than 6 months, patients and family caregivers were willing to participate, and able to complete the evaluation questionnaire. Types of dementia were diagnosed and classified according to the National Institute of Neurological and Communicative Disease and Related Disorders Association criteria, image studies, laboratory tests, and clinical judgment.
3.1. Basic data of the patients with dementia and their family caregivers Table 1 shows the final data of 173 patients and their family caregivers recruited in this study. Most of the patients were female
Table 1 Basic data of patients with dementia and family caregivers (n = 173). Patients
2.2. Measurement of BPSD The DBDI is a 48-item index developed by Tang et al. (2005) for measuring observable behavioral and psychological symptoms in patients with dementia. Responses to the DBDI were divided into the frequency and the disturbance scale. The frequency scale (DBDI-f) was rated on a 10-point numeric scale ranging from 0 for ‘‘absence of such behavior’’ to 9 for ‘‘continuous occurrence of such behavior’’. The disturbance scale (DBDI-d) was rated on a 5-point scale with 0 for ‘‘no disturbance’’, 1 for ‘‘minimal disturbance’’, 2 for ‘‘mild disturbance’’, 3 for ‘‘moderate disturbance’’, and 4 for ‘‘severe disturbance’’. A frequency index and a disturbance index were generated by transforming the total scores of the frequency and disturbance scales to a scale ranging from 0 to 100. The preliminary version of the DBDI was validated in a group of institutionalized patients with dementia (Tang et al., 2005). 2.3. Evaluation of cognitive function and caregiver strain The MMSE and the CDR were part of the initial and follow-up evaluation for each patient with dementia. Information about clinical diagnosis, the MMSE, and the CDR were obtained from clinical records. Caregiver strain is measured by asking the caregiver to score the global strain they perceived in taking care of the patient with dementia. The global strain score ranges from 1 to 10 with 10 representing the highest strain. 2.4. Data collection Major caregivers of the patient with dementia who fulfilled the above inclusion criteria were invited to participate. After obtaining their oral consent to participate, a well-trained nurse explained the purpose of this study and gave instructions for completing the questionnaire to the major family caregivers who were literate and able to self-respond to the questionnaire. For caregivers who were illiterate or unable to self-respond to the questionnaire, the same nurse read the items of the questionnaire and assisted the caregiver to check the answers. To minimize recall bias, we assessed BPSD and caregiver strain for the past week.
Caregivers
No.
%
No.
%
Age 1–49 50–64 65–74 75
– 12 43 118
– 6.9 24.9 68.2
71 77 16 9
40.0 44.5 9.2 5.2
Gender Male Female
64 109
37.0 63.0
56 117
32.4 67.6
Education Illiteracy Literacy Primary Secondary High University
57 16 37 20 16 14
32.9 9.2 21.4 11.6 9.2 8.1
2 3 25 30 60 48
1.2 1.7 14.5 17.3 34.7 27.7
Type of dementia Alzheimer’s Vascular Mixed Unclassified Others*
84 44 21 11 13
48.6 25.4 12.1 6.4 7.6
Relation with caregivers Spouse Father and child Mother and child Daughter-in-law Others
49 27 59 34 11
27.2 15.0 32.8 18.9 6.1
CDR Very mild (0.5) Mild (1) Moderate (2) Severe (3)
53 44 42 34
30.6 25.4 24.3 19.6
Mean
S.D.
Mean
S.D.
14.85
6.63 4.66
3.13
19.18 14.44
15.84 17.53
MMSE Global caregiver strain DBDI-f DBDI-d
Note: The other category included two patients of dementia with Parkinsonism, four patients associated with vitamin B12 deficiency, one patient with previous CNS infection, one patient with previous head trauma, one patient with alcoholism, and four patients with psychiatric co-morbidities.
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(63.0%), illiterate (32.9%), with a mean standard deviation of age of 77.1 7.6. Eighty-four patients (48.6%) had Alzheimer’s disease (AD), 44 (25.4%) had vascular dementia (VaD), 21 (12.1%) had dementia of mixed type, and 11 patients (6.45%) were unclassified. Thirteen patients were classified into the ‘‘other’’ category including two patients of dementia with Parkinsonism, four patients associated with vitamin B12 deficiency, one patient with previous CNS infection, one patient with previous head trauma, one patient with alcoholism, and four patients with psychiatric co-morbidities. In more than half (56.0%) of the patients, the severity was very mild to mild (with a global CDR of 0.5 to 1). The mean S.D. of MMSE was 14.85 6.63. Family caregivers also showed female predominance (67.6%), with a mean standard deviation age of 52.0 12.7, and a high school and university education of 62.4%. Most of the caregivers were children (47.8%) and spouse (27.2%) of the patient. Caregivers reported a global strain of 4.7 3.2. The mean S.D. of the frequency and disturbance index of the DBDI were 19.18 15.84 and 14.44 17.53, respectively. Table 2 Factor analysis of the frequency scale of DBDI. Items/factors
1
Hitting/kicking/punching Making noise Destruction of objects Verbal abuse Attacking people Delusion of persecution Hallucinations Searching for the deceased Crying without reason Abusive behavior/cursing Playing with excrement Self-talking Tearful and sad Delusions of association Throwing away of food Using garbage Repeat one’s words Need for companionship Demanding Unrealistic speech Fearful/afraid Appearing sad Having someone within sight Loss of temper Hiding objects Searching for objects Bossy Putting things in improper places Occupying other’s space Getting lose Taking/using others’ things Impropriate behaviors Throwing objects Losing things Littering Collecting useless objects Loss of interest Apathy Hypoactivity Defecating in improper places Unable to understand Inability of expression Refusal to eat Repeat one’s works Sexual speech Touching the opposite sex Exposing body in public Jealousy
0.751 0.751 0.738 0.673 0.667 0.651 0.637 0.632 0.628 0.606 0.544 0.538 0.530 0.522 0.459 0.439
0.275 0.371 0.249 0.238 0.404
0.372 0.363
Principal component analysis and varimax rotation of the frequency scale of DBDI obtained five factors that explained 51.3% of the total variance. These five factors were ‘‘agitation and psychotic behaviors (16 items)’’, ‘‘affective and communicative problems (11 items)’’, ‘‘disorientation (9 items)’’, ‘‘passivity (8 items)’’, and ‘‘sexual problems (4 items)’’. Internal consistent reliability (Cronbach’s a) of the frequency scale of DBDI was 0.95 (Table 2). Principal component analysis and varimax rotation of the disturbance scale of DBDI obtained three factors that explained 53.1% of the total variance. These three factors were ‘‘affective, passivity, and communicative problems (24 items)’’, ‘‘agitation, disorientation, and psychotic behaviors (18 items)’’, and ‘‘sexual problems (6 items)’’. Internal consistent reliability (Cronbach’s a) of the disturbance of DBDI was 0.97 (Table 3).
Table 3 Factor analysis of the disturbance scale of DBDI. 2
3
4
5
0.204 0.247
0.259 0.321 0.345 0.227 0.221 0.415 0.419 0.327
0.677 0.585 0.554 0.540 0.530 0.521 0.517 0.506 0.504 0.478 0.441
0.301 0.341 0.364 0.258 0.305
3.2. Psychometric properties of the DBDI
0.323 0.238 0.255
0.228 0.235 0.303 0.348 0.263 0.353 0.306 0.327 0.227
0.236
0.214
0.306 0.385 0.360 0.205
0.205
0.237 0.432
0.262 0.326
0.247
0.214
0.352
0.291 0.300 0.377
0.201 0.205 0.297
0.236
0.213 0.296 0.425 0.249 0.306
0.333
0.294
0.452 0.359 0.687 0.579 0.561 0.549 0.538 0.521 0.518 0.476 0.425
0.272
0.207
0.238 0.282 0.256 0.351 0.363 0.743 0.726 0.707 0.571 0.508 0.469 0.348 0.283
0.252 0.766 0.759 0.644 0.549
Notes: Cronbach’s alpha = 0.95; Principal Component Analysis with varimax rotation and Kaiser Normalization. Factor loadings of 0.2 or less are not shown in the table. Factor 1: agitation and psychotic behaviors; Factor 2: affective and communicative problems; Factor 3: disorientation; Factor 4: passivity; Factor 5: sexual problems.
Items/Factors
1
Need for companionship Repeat one’s words Unable to understand Unrealistic speech Fearful/afraid Losing things Appearing sad Hypoactivity Loss of temper Self-talking Apathy Bossy Searching for objects Littering Inability of expression Loss of interest Throwing objects Having someone within sight Demanding Repeat one’s works Tearful and sad Hiding objects Refusal to eat Occupying other’s space Attacking people Making noise Destruction of objects Playing with excrement Hallucinations Searching for the deceased Hitting/kicking/punching Delusion of persecution Putting things in improper places Using garbage Verbal abuse Crying without reason Collecting useless objects Abusive behavior/cursing Delusions of association Impropriate behaviors Taking/using others’ things Defecating in improper places Sexual speech Jealousy Exposing body in public Touching the opposite sex Getting lose Throwing away of food
0.765 0.743 0.721 0.693 0.685 0.659 0.652 0.650 0.646 0.642 0.602 0.602 0.595 0.589 0.578 0.571 0.562 0.531 0.525 0.520 0.512 0.505 0.485 0.439 0.233
0.418 0.388
0.414 0.367 0.312 0.232 0.488 0.345 0.361 0.468 0.367 0.387
2
0.289 0.372 0.381 0.221 0.311 0.233 0.300 0.489 0.426 0.278 0.491 0.394 0.453 0.551 0.246 0.397
0.203 0.224 0.272
0.252 0.353
0.491 0.414 0.381 0.376 0.753 0.734 0.724 0.691 0.689 0.687 0.676 0.667 0.650 0.645 0.619 0.599 0.597 0.560 0.553 0.527 0.523 0.450
0.412 0.391 0.202 0.379
3
0.290 0.439
0.286
0.355 0.252
0.364 0.389
0.324 0.205 0.266 0.792 0.636 0.597 0.535 0.487 0.440
Note: Cronbach’s alpha = 0.95; Principal Component Analysis with varimax rotation and Kaiser Normalization. Factor loadings of 0.2 or less were not shown in the table. Factor 1: affective and communicative problems; Factor 2: agitation, disorientation and psychotic behaviors; Factor 3: sexual problems.
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3.3. Univariate analysis of the relation between BPSD and basic variables No gender difference in the frequency and disturbance index of DBDI was observed in this study. The correlations between age and the frequency and disturbance index of DBDI were low (r = 0.23, p < 0.01 and r = 0.17, p < 0.05). ANOVA analysis revealed a significantly higher frequency and disturbance index in illiterate patients than literate patients and patients with education (F = 7.15, p = 0.001 and F = 6.13, p = 0.003, respectively), but no difference among educational levels was observed. Comparing patients with different types of dementia, patients with VaD had a higher frequency index than patients with AD (mean difference = 7.8, F = 3.66, p = 0.28). There was no difference in disturbance index among different types of dementia. We reduced the groups of relationship between patients and family caregivers from seven to four groups in the subsequent analysis by grouping father and son with father and daughter, mother and son with mother and daughter, daughter-in-law with other members into three groups due to similarity in DBDI and global strain scores. The relationship between the patient with dementia and family caregiver affected the rating of the frequency but not the disturbance index of the DBDI (F = 4.78, p = 0.003 and F = 2.04, p = 0.11, respectively). Post hoc analysis with Scheffe´ test revealed that the relationship of daughter-in-law and other members had a higher frequency index than the relationship of husband and wife (mean difference = 11.32 3.17, p = 0.006). There was no difference in global strain score in various types of patient–caregiver relationship.
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Table 4 Regression model for behavioral and psychological symptoms of dementia and related factors. Model 1 Dependent variable
Intercept Female patients Moderate CDR Severe CDR Female caregivers Father–child Daughter-in-law/others MMSE Vascular dementia Model statistics Overall model F; d.f. p value Adjusted R2
Model 2 DBDI-f
Dependent variable DBDI-d
B
S.E.
9.45 6.53 10.35 14.77 4.75 8.26 4.45 -0.46
4.95 2.47 2.63 3.27 2.27 3.23 2.37 0.20
4.15
2.12
16.28; 8 <0.001 0.42
Intercept Female patients Moderate CDR Severe CDR Female caregivers Father-child MMSE unclassified dementia
B
S.E.
6.41 6.35 8.38 16.17 6.03 8.96 -0.51 8.83
6.16 2.89 3.25 3.99 2.47 3.89 0.25 4.62
11.31; 7 <0.001 0.302
Note: Reference groups in model 1 and 2: male patients, male caregivers, Alzheimer’s disease, illiteracy, very mild CDR stage and husband–wife relationship.
analysis and Scheffe´ post hoc test revealed a significant increase in the frequency index (F = 28.69, p < 0.001) and disturbance index (F = 19.48, p < 0.001) with advance in CDR staging (Fig. 1). Frequency and disturbance index of DBDI showed a significant positive correlation with the global stain score (r = 0.67, p < 0.01 and r = 0.66, p < 0.01, respectively) 3.5. Multivariate analysis of the relation between BPSD and variables
3.4. Relationships between BPSD, severity of dementia, cognitive function, and caregiver strain Frequency and disturbance index of DBDI had a significant positive correlation with the CDR (r = 0.63, p < 0.001 and r = 0.55, p < 0.001, respectively), and a significant negative correlation with the MMSE (r = 0.52, p < 0.001 and r = 0.45, p < 0.001, respectively). Except for the very mild and mild CDR stage, ANOVA
We applied backward stepwise multiple regression to examine the relationship between the frequency and disturbance index of the DBDI and independent variables evaluated in this study. Categorical variables were transformed into dummy variables using binary coding. Male patients, male caregivers, a diagnosis of AD, illiteracy, a very mild CDR stage, and a husband-and-wife relation were set as reference groups. With the frequency index of DBDI serving as the independent variable, seven variables including female patients, female caregivers, moderate and severe CDR stages, a father-and-child relationship, a daughter-in-lawand-others relationship, a diagnosis of VaD, and MMSE score were included in the final model. This model explained 44.9% of the total variance (R2 = 0.449, F = 16.28, p < 0.001). Tolerances of all variables in the model were greater than 0.4, indicating no multicollinearity among variables. Using the disturbance index of DBDI as the dependent variable, we obtained another regression model (Table 4), which explained 30.6% of the total variance (R2 = 0.331, F = 11.31, p < 0.001). Female patients, female caregivers, moderate and severe CDR stages, a father-and-child relationship, unclassified dementia, and MMSE score were included in the final model. Tolerances of all variables in the second model were greater than 0.4, also indicating no multicollinearity among variables.
4. Discussion
Fig. 1. Frequency and disturbance index of DBDI in different CDR stages.
Our results confirmed the reliability and validity of the DBDI. The trend of increase in the frequency and disturbance index of the DBDI with advance in CDR staging and the high correlation between the indices of the DBDI and the MMSE scores reflect convergent validity of the DBDI. The high correlation between the DBDI and the global strain index implied that the DBDI succeeds in assessing behaviors that have major impact on caregivers, the major objective of this instrument. Both the frequency and the
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disturbance scales have good internal consistency reliability measured by Cronbach’s a statistics. Improper sexual behaviors became a unique factor identified by factor analysis of our data. Sexual behavior is not a distinct dimension in most of the neuropsychiatric evaluation instruments available in the literature. Our finding reflected cultural difference between Chinese and Western society where sexual behaviors are a stigma in a Chinese society. Caregivers may feel ashamed of revealing improper sexual behaviors of their family members. It was well known that BPSD were more frequently observed in certain types of dementia such as Lewy bodies dementia and VaD (Ballard et al., 1995; Chiu et al., 2006). In our study, VaD has a higher frequency index of the DBDI than AD (the reference group in the multiple regression model), which is consistent with the findings in the literature. There was no consensus in the relationship between cognitive function and BPSD. The association ranged from no association to positive, negative, or mixed findings. Some early studies found no association (Kotrla et al., 1995; Lam et al., 2006), while some recent studies did observe an association (Cummings 2000; Harwood et al., 2000) between cognitive changes and BPSD, and a recent study discovered that depressive mood, physical aggression, and wandering are statistically associated with the severity of AD (Hamumo et al., 2007). In our study, both the frequency and disturbance index of the DBDI were moderately and negatively correlated to the MMSE score. Apart from the above arguments, in our study, selection bias should not be ruled out, since patients with both cognitive and behavioral problems were more likely to be identified and followed up at neurological clinics. As for the relation between BPSD and cognitive function, there was no constant pattern between BPSD and severity of dementia. Previous research found that some symptoms occurred more frequently at the moderate to moderate–severe stage of dementia. A trend of increasing frequency of delusions, hallucinations and aberrant motor activity was observed with the progress of dementia (Piccininni et al., 2005). Variations among studies may come from differences in study population, methods of assessment, types of dementia, and physical functions. In our previous study, we observed more BPSD among ambulated patients than among institutional patients with dementia who had difficulty in walking. Deterioration in physical function at an advanced stage of dementia may prevent the occurrence of some behavioral symptoms such as wandering. It is possible that patients recruited in our present study had a relatively better physical function than those in other previous studies, so that a decrease in BPSD at the advanced stage of dementia could not be observed. Although there were several self-administered BPSD assessment instruments available, the influence of rater characteristics on the rating results was seldom explored. In this study, some rater characteristics are independent predictors of BPSD identified by multivariate analysis. Female caregivers, a father-and-child relationship, and a daughter-in-law-and-others relationship were associated with more BPSD compared with the reference groups. Female caregivers, and a father-and-child relationship were associated with more disturbance in BPSD compared with the reference group. A simple explanation to the above observations is difficult. Biases may come from the ability of the caregivers to recognize behavioral change, difference in tolerance to patients’ behaviors, and the concern of patients’ condition. Moreover, BPSD may be the result of the interaction between the patients and the environment (Eriksson, 2000). Behavioral changes with the change in caregivers and environment may compromise the reliability of the BPSD assessment instruments. The caregiver factor should be taken into consideration when using family caregiver as a source of information about BPSD. Future studies should explore which
kinds of caregivers’ characteristics may affect the assessment of BPSD, their nature, and the extent of influence. Our study recruited only a small number of patients and their caregivers. Most of the patients have AD or VaD and are at a mild or very mild stage of dementia. Caution must be taken when generalizing our results to other patient groups. However, our results highlight the importance of caregiver factors in the evaluation of BPSD. 5. Conclusions Our study verified the applicability of using DBDI as a selfadministered measure by literate family caregivers to evaluate BPSD in patients with dementia living in the community. For illiterate family caregivers, the questionnaire can be completed with assistance. Since the median time for the completion of the frequency and disturbance scales of the DBDI was about 15 minutes, it was acceptable to all caregivers. Conflicts of interest statement None. Acknowledgments We would like to take this opportunity to thank all patients and caregivers who participated in this study. This study had received an IRB approval from the ethical committee of the National Taiwan University Hospital. References Ballard, C.G., Saad, K., Patel, A., Gahir, M., Solis, M., Coope, B., Wilcock, G., 1995. The prevalence and phenomenology of psychotic symptoms in dementia sufferers. Int. J. Geriatr. Psychiatry 10, 477–485. Chiu, M.J., Chen, T.F., Yip, P.K., Hua, M.S., Tang, L.Y., 2006. Behavioral and psychologic symptoms in different types of dementia. J. Formos. Med. Assoc. 105, 556–562. Chow, J., Borson, S., Scanlan, J., 2000. Stage-specific prevalence of behavioral symptoms in Alzheimer’s disease in a multi-ethnic community sample. Am. J. Geriatr. Psychiatry 8, 123–133. Chow, T.W., Liu, C.K., Fuh, J.L., Leung, V.P., Tai, C.T., Chen, L.W., Wang, S.J., Chiu, H.F., Lam, L.C., Chen, Q.L., Cummings, J.L., 2002. Neuropsychiatric symptoms of Alzheimer’s disease differ in Chinese and American patients. Int. J. Geriatr. Psychiatry 17, 22–28. Duachman, D.A., Swearer, J.M., O’Donnell, B.F., Mitchell, A.L., Maloon, A., 1992. The caretaker Obstreperous Behavior Rating Assessment (COBRA) Scale. J. Am. Geriatr. Soc. 40, 463–480. Eriksson, S., 2000. Impact of the environment on behavioral and psychological symptoms of dementia. Int. Psychogeriatr. 12, 83–88. Finkel, S., Burns, A., Cohen, G., 2000. Behavioral and psychological symptoms of dementia (BPSD): a clinical and research update, overview. Int. Psychogeriatr. 12, 13–18. Gaugler, J.E., Edwards, A.B., Femia, E.E., Zarit, S.H., Stephens, M.A., Townsend, A., Greene, R., 2000. Predictors of institutionalization of cognitively impaired elders: Family help and the timing of placement. J. Gerontol. B: Psychol. Sci. Soc. Sci. 55, P247–P255. Harwood, D.G., Barker, W.W., Ownby, R.L., Duara, R., 2000. Relationship of behavioral and psychological symptoms to cognitive impairment and functional status in Alzheimer’s disease. Int. J. Geriatr. Psychiatry 15, 393–400. Kang, S.J., Choi, S.H., Lee, B.H., Jeong, Y., Hahm, D.S., Han, I.W., Cummings, J.L., Na, D.L., 2004. Caregivers-administered neuropsychiatric inventory (CGA-NPI). J. Geriatr. Psychiatry Neurol. 17, 32–35. Kotrla, K.J., Chacko, R.C., Harper, R.G., Doody, R., 1995. Clinical variables associated with psychosis in Alzheimer’s disease. Am. J. Psychiatry 152, 1377–1379. Lam, L.C., Leung, T., Lui, V.W., Leung, V.P., Chiu, H.F., 2006. Association between cognitive function, behavioral syndromes and two-year clinical outcome in Chinese subjects with late-onset Alzheimer’s disease. Int. Psychogeriatr. 18, 517–526. Matsumoto, N., Ikeda, M., Fukuhara, R., Shinagawa, S., Ishikawa, T., Mori, T., Toyota, Y., Matsumoto, T., Adachi, H., Hirono, N., Tanabe, H., 2007. Caregiver burden associated with behavioral and psychological symptoms of dementia in elderly people in the local community. Dement. Geriatr. Cogn. Disord. 23, 219–224. Murman, D.L., Chen, Q., Colucci, P.M., Colenda, C.C., Gelb, D.J., Liang, J., 2002. Comparison of healthcare utilization and direct costs in three degenerative dementias. Am. J. Geriatr. Psychiatry 10, 328–336.
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Smith, G.E., Kokmen, E., O’Brien, P.C., 2000. Risk factors for nursing home placement in a population-based dementia cohort. J. Am. Geriatr. Soc. 48, 519–525. Steele, C., Rovner, B., Chase, G.A., Folstein, M., 1990. Psychiatric symptoms and nursing home placement of patients with Alzheimer disease. Am. J. Psychiatry 147, 1049–1051. Tang, L.Y., Yip, P.K., Wu, E.C., Leung, K.K., 2005. The development and validation of a dementia behavior disturbance inventory. Int. Psychogeriatr. 18, 95–110. Yaffe, K., Fox, P., Newcomer, R., Sands, L., Lindquist, K., Dane, K., Covinsky, K.E., 2002. Patient and caregiver characteristics and nursing home placement in patients with dementia. J. Am. Med. Assoc. 287, 2090–2097.
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Assessment of behavioral and psychological symptoms of dementia by family caregivers Yam-Ting Kwok a, Chin-Ying Chen b, Ming-Jang Chiu c, Li-Yu Tang d, Kai-Kuen Leung b,* a
Department of Neurology, Far Eastern Memorial Hospital, Nan-Ya S. Rd., Sec.2 Pan-Chiao, Taipei, Taiwan, ROC Department of Family Medicine, National Taiwan University Hospital, Chung-Shan South Road 7, Taipei 10016, Taiwan, ROC c Department of Neurology, National Taiwan University Hospital and College of Medicine, Chung-Shan South Road 7,Taipei 10016, Taiwan, ROC d National Taipei College of Nursing, National Yang-Ming University, No. 365, Ming Te Road, Peitou, Taipei 112, Taiwan, ROC b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 2 June 2009 Received in revised form 20 January 2010 Accepted 29 January 2010 Available online 5 March 2010
This study was designed to test the performance and related factors of a self-administered instrument in assessing behavioral and psychological symptoms of dementia (BPSD) by family caregivers. We recruited 173 patients with dementia and major caregivers from two neurological clinics. Information about clinical diagnosis, the Mini Mental State Examination (MMSE), the Clinical Dementia Rating (CDR), the Dementia Behavior Disturbance Inventory (DBDI), and global caregivers’ strain were collected from interview and chart review. We found that DBDI has acceptable construct validity and good internal consistency reliability. BPSD was more frequently found in patients with advanced dementia, poor cognitive function and highly correlated to caregivers’ strain. Multivariate analysis revealed that female patients and caregivers, advanced CDR stages, patient–caregiver relationship, types of dementia and MMSE score were related to the increase of frequency and disturbance index of DBDI. We concluded that BPSD could be evaluated by family caregivers using a self-administered instrument. Further study is indicated to clarify how caregiver characteristics affect the report of behavioral symptoms, and its clinical importance. ß 2010 Elsevier Ireland Ltd. All rights reserved.
Keywords: Dementia Caregiver Behavioral and psychological symptoms Caregiver strain Alzheimer’s disease Rating scale
1. Introduction Behavioral and psychological symptoms of dementia (BPSD) is an umbrella term that describes an array of symptoms found in patients with dementia (Finkel et al., 2000). These symptoms determine prescription of medications, institutionalization (Steele et al., 1990; Gaugler et al., 2000; Smith et al., 2000; Yaffe et al., 2002; Scarmeas et al., 2007), caregivers’ strain and burden (Matsumoto et al., 2007), and cost of care (Murman et al., 2002). For clinical and research purposes, BPSD are mostly assessed according to the observation of family caregivers, professional caregivers, physicians, and sometimes self-reported by patients with early dementia. Of the above information sources, observation from family caregivers is worth further notice. For patients living at home, family caregivers are the most important and valuable source of information. In medical clinics, physicians also rely on information from family caregivers because information collected directly from patients with dementia may be invalid, and communication may be impossible in patients with profound
* Corresponding author. Tel.: +886 2 2312 3456x66827; fax: +886 2 2311 68674. E-mail address: [email protected] (K.-K. Leung). 0167-4943/$ – see front matter ß 2010 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.archger.2010.01.021
dementia. Instruments have been developed to assess neuropsychiatric symptoms such as the BEHAVE-AD and Neuropsychiatric Inventory (NPI). Although these instruments have proven validity, reliability, and applicability in research and clinical settings, the collection of data involves time-consuming interviews with caregivers. Another stream of research focused on the development of self-administered instrument rated by caregivers, such as the Caregiver-administered NPI (CGA-NPI) (Kang et al., 2004), and Caretaker Obstreperous Behavior Rating Scale (COBRA) (Duachman et al., 1992). The above self-administered instruments provided an option for the assessment of BPSD at busy clinics. Since behavioral symptoms are closely related to culture and society (Chow et al., 2000, 2002; Sink et al., 2004), instruments developed by Western countries may not be directly applied to Chinese population. In response to such a need, a DBDI was developed to assess behaviors important to care giving for professional and family caregivers. Behavior items were generated from behavioral patterns identified from focus group interviews with family and professional caregivers, previous research on local population, and clinical experiences of the authors. The DBDI was designed to identify behaviors from all stages of dementia; behavioral problems that are common and possibly amendable; behaviors with major impact on caregivers; and behaviors that can
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be observed and rated by family and professional caregivers. The first version of the DBDI has 72 items grouped into 12 domains and was tested in a group of institutional patients and their professional caregivers. Initial validation and item reduction yielded a 48-item version with good internal reliability, test– retest reliability, and construct validity (Tang et al., 2005). In the present study, we tested the applicability and psychometric properties of the 48-item DBDI rated by family caregivers of patients with dementia and evaluated the relationship between BPSD, patients’ and family caregivers’ characteristics, and caregiver strain for patients of dementia living in the community.
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2.5. Statistical analysis
2. Subjects and methods
We used SPSS 11 for Windows in our statistical analysis. All data first underwent descriptive analysis. Exploratory factor analysis was used for evaluating the frequency and disturbance scales of the DBDI. Different factoring and axis rotation methods were tried until the best result was obtained. Number of factors was determined by applying the criteria of eignvalue, the scree test, and parallel analysis. ANOVA and Pearson Product Moment Correlation were employed to analyze the relations between variables. Backward stepwise multiple regression was utilized to identify a set of variables which can best explain the variations in the frequency and disturbance scales of the DBDI.
2.1. Subjects
3. Results
Patients with dementia were recruited from two neurology outpatient clinics (one memory clinic and one neurology clinic) at two medical centers from 2006 to 2007. Inclusion criteria included a diagnosis of dementia made by neurologists and followed up at the same clinic for more than 6 months, patients and family caregivers were willing to participate, and able to complete the evaluation questionnaire. Types of dementia were diagnosed and classified according to the National Institute of Neurological and Communicative Disease and Related Disorders Association criteria, image studies, laboratory tests, and clinical judgment.
3.1. Basic data of the patients with dementia and their family caregivers Table 1 shows the final data of 173 patients and their family caregivers recruited in this study. Most of the patients were female
Table 1 Basic data of patients with dementia and family caregivers (n = 173). Patients
2.2. Measurement of BPSD The DBDI is a 48-item index developed by Tang et al. (2005) for measuring observable behavioral and psychological symptoms in patients with dementia. Responses to the DBDI were divided into the frequency and the disturbance scale. The frequency scale (DBDI-f) was rated on a 10-point numeric scale ranging from 0 for ‘‘absence of such behavior’’ to 9 for ‘‘continuous occurrence of such behavior’’. The disturbance scale (DBDI-d) was rated on a 5-point scale with 0 for ‘‘no disturbance’’, 1 for ‘‘minimal disturbance’’, 2 for ‘‘mild disturbance’’, 3 for ‘‘moderate disturbance’’, and 4 for ‘‘severe disturbance’’. A frequency index and a disturbance index were generated by transforming the total scores of the frequency and disturbance scales to a scale ranging from 0 to 100. The preliminary version of the DBDI was validated in a group of institutionalized patients with dementia (Tang et al., 2005). 2.3. Evaluation of cognitive function and caregiver strain The MMSE and the CDR were part of the initial and follow-up evaluation for each patient with dementia. Information about clinical diagnosis, the MMSE, and the CDR were obtained from clinical records. Caregiver strain is measured by asking the caregiver to score the global strain they perceived in taking care of the patient with dementia. The global strain score ranges from 1 to 10 with 10 representing the highest strain. 2.4. Data collection Major caregivers of the patient with dementia who fulfilled the above inclusion criteria were invited to participate. After obtaining their oral consent to participate, a well-trained nurse explained the purpose of this study and gave instructions for completing the questionnaire to the major family caregivers who were literate and able to self-respond to the questionnaire. For caregivers who were illiterate or unable to self-respond to the questionnaire, the same nurse read the items of the questionnaire and assisted the caregiver to check the answers. To minimize recall bias, we assessed BPSD and caregiver strain for the past week.
Caregivers
No.
%
No.
%
Age 1–49 50–64 65–74 75
– 12 43 118
– 6.9 24.9 68.2
71 77 16 9
40.0 44.5 9.2 5.2
Gender Male Female
64 109
37.0 63.0
56 117
32.4 67.6
Education Illiteracy Literacy Primary Secondary High University
57 16 37 20 16 14
32.9 9.2 21.4 11.6 9.2 8.1
2 3 25 30 60 48
1.2 1.7 14.5 17.3 34.7 27.7
Type of dementia Alzheimer’s Vascular Mixed Unclassified Others*
84 44 21 11 13
48.6 25.4 12.1 6.4 7.6
Relation with caregivers Spouse Father and child Mother and child Daughter-in-law Others
49 27 59 34 11
27.2 15.0 32.8 18.9 6.1
CDR Very mild (0.5) Mild (1) Moderate (2) Severe (3)
53 44 42 34
30.6 25.4 24.3 19.6
Mean
S.D.
Mean
S.D.
14.85
6.63 4.66
3.13
19.18 14.44
15.84 17.53
MMSE Global caregiver strain DBDI-f DBDI-d
Note: The other category included two patients of dementia with Parkinsonism, four patients associated with vitamin B12 deficiency, one patient with previous CNS infection, one patient with previous head trauma, one patient with alcoholism, and four patients with psychiatric co-morbidities.
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(63.0%), illiterate (32.9%), with a mean standard deviation of age of 77.1 7.6. Eighty-four patients (48.6%) had Alzheimer’s disease (AD), 44 (25.4%) had vascular dementia (VaD), 21 (12.1%) had dementia of mixed type, and 11 patients (6.45%) were unclassified. Thirteen patients were classified into the ‘‘other’’ category including two patients of dementia with Parkinsonism, four patients associated with vitamin B12 deficiency, one patient with previous CNS infection, one patient with previous head trauma, one patient with alcoholism, and four patients with psychiatric co-morbidities. In more than half (56.0%) of the patients, the severity was very mild to mild (with a global CDR of 0.5 to 1). The mean S.D. of MMSE was 14.85 6.63. Family caregivers also showed female predominance (67.6%), with a mean standard deviation age of 52.0 12.7, and a high school and university education of 62.4%. Most of the caregivers were children (47.8%) and spouse (27.2%) of the patient. Caregivers reported a global strain of 4.7 3.2. The mean S.D. of the frequency and disturbance index of the DBDI were 19.18 15.84 and 14.44 17.53, respectively. Table 2 Factor analysis of the frequency scale of DBDI. Items/factors
1
Hitting/kicking/punching Making noise Destruction of objects Verbal abuse Attacking people Delusion of persecution Hallucinations Searching for the deceased Crying without reason Abusive behavior/cursing Playing with excrement Self-talking Tearful and sad Delusions of association Throwing away of food Using garbage Repeat one’s words Need for companionship Demanding Unrealistic speech Fearful/afraid Appearing sad Having someone within sight Loss of temper Hiding objects Searching for objects Bossy Putting things in improper places Occupying other’s space Getting lose Taking/using others’ things Impropriate behaviors Throwing objects Losing things Littering Collecting useless objects Loss of interest Apathy Hypoactivity Defecating in improper places Unable to understand Inability of expression Refusal to eat Repeat one’s works Sexual speech Touching the opposite sex Exposing body in public Jealousy
0.751 0.751 0.738 0.673 0.667 0.651 0.637 0.632 0.628 0.606 0.544 0.538 0.530 0.522 0.459 0.439
0.275 0.371 0.249 0.238 0.404
0.372 0.363
Principal component analysis and varimax rotation of the frequency scale of DBDI obtained five factors that explained 51.3% of the total variance. These five factors were ‘‘agitation and psychotic behaviors (16 items)’’, ‘‘affective and communicative problems (11 items)’’, ‘‘disorientation (9 items)’’, ‘‘passivity (8 items)’’, and ‘‘sexual problems (4 items)’’. Internal consistent reliability (Cronbach’s a) of the frequency scale of DBDI was 0.95 (Table 2). Principal component analysis and varimax rotation of the disturbance scale of DBDI obtained three factors that explained 53.1% of the total variance. These three factors were ‘‘affective, passivity, and communicative problems (24 items)’’, ‘‘agitation, disorientation, and psychotic behaviors (18 items)’’, and ‘‘sexual problems (6 items)’’. Internal consistent reliability (Cronbach’s a) of the disturbance of DBDI was 0.97 (Table 3).
Table 3 Factor analysis of the disturbance scale of DBDI. 2
3
4
5
0.204 0.247
0.259 0.321 0.345 0.227 0.221 0.415 0.419 0.327
0.677 0.585 0.554 0.540 0.530 0.521 0.517 0.506 0.504 0.478 0.441
0.301 0.341 0.364 0.258 0.305
3.2. Psychometric properties of the DBDI
0.323 0.238 0.255
0.228 0.235 0.303 0.348 0.263 0.353 0.306 0.327 0.227
0.236
0.214
0.306 0.385 0.360 0.205
0.205
0.237 0.432
0.262 0.326
0.247
0.214
0.352
0.291 0.300 0.377
0.201 0.205 0.297
0.236
0.213 0.296 0.425 0.249 0.306
0.333
0.294
0.452 0.359 0.687 0.579 0.561 0.549 0.538 0.521 0.518 0.476 0.425
0.272
0.207
0.238 0.282 0.256 0.351 0.363 0.743 0.726 0.707 0.571 0.508 0.469 0.348 0.283
0.252 0.766 0.759 0.644 0.549
Notes: Cronbach’s alpha = 0.95; Principal Component Analysis with varimax rotation and Kaiser Normalization. Factor loadings of 0.2 or less are not shown in the table. Factor 1: agitation and psychotic behaviors; Factor 2: affective and communicative problems; Factor 3: disorientation; Factor 4: passivity; Factor 5: sexual problems.
Items/Factors
1
Need for companionship Repeat one’s words Unable to understand Unrealistic speech Fearful/afraid Losing things Appearing sad Hypoactivity Loss of temper Self-talking Apathy Bossy Searching for objects Littering Inability of expression Loss of interest Throwing objects Having someone within sight Demanding Repeat one’s works Tearful and sad Hiding objects Refusal to eat Occupying other’s space Attacking people Making noise Destruction of objects Playing with excrement Hallucinations Searching for the deceased Hitting/kicking/punching Delusion of persecution Putting things in improper places Using garbage Verbal abuse Crying without reason Collecting useless objects Abusive behavior/cursing Delusions of association Impropriate behaviors Taking/using others’ things Defecating in improper places Sexual speech Jealousy Exposing body in public Touching the opposite sex Getting lose Throwing away of food
0.765 0.743 0.721 0.693 0.685 0.659 0.652 0.650 0.646 0.642 0.602 0.602 0.595 0.589 0.578 0.571 0.562 0.531 0.525 0.520 0.512 0.505 0.485 0.439 0.233
0.418 0.388
0.414 0.367 0.312 0.232 0.488 0.345 0.361 0.468 0.367 0.387
2
0.289 0.372 0.381 0.221 0.311 0.233 0.300 0.489 0.426 0.278 0.491 0.394 0.453 0.551 0.246 0.397
0.203 0.224 0.272
0.252 0.353
0.491 0.414 0.381 0.376 0.753 0.734 0.724 0.691 0.689 0.687 0.676 0.667 0.650 0.645 0.619 0.599 0.597 0.560 0.553 0.527 0.523 0.450
0.412 0.391 0.202 0.379
3
0.290 0.439
0.286
0.355 0.252
0.364 0.389
0.324 0.205 0.266 0.792 0.636 0.597 0.535 0.487 0.440
Note: Cronbach’s alpha = 0.95; Principal Component Analysis with varimax rotation and Kaiser Normalization. Factor loadings of 0.2 or less were not shown in the table. Factor 1: affective and communicative problems; Factor 2: agitation, disorientation and psychotic behaviors; Factor 3: sexual problems.
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3.3. Univariate analysis of the relation between BPSD and basic variables No gender difference in the frequency and disturbance index of DBDI was observed in this study. The correlations between age and the frequency and disturbance index of DBDI were low (r = 0.23, p < 0.01 and r = 0.17, p < 0.05). ANOVA analysis revealed a significantly higher frequency and disturbance index in illiterate patients than literate patients and patients with education (F = 7.15, p = 0.001 and F = 6.13, p = 0.003, respectively), but no difference among educational levels was observed. Comparing patients with different types of dementia, patients with VaD had a higher frequency index than patients with AD (mean difference = 7.8, F = 3.66, p = 0.28). There was no difference in disturbance index among different types of dementia. We reduced the groups of relationship between patients and family caregivers from seven to four groups in the subsequent analysis by grouping father and son with father and daughter, mother and son with mother and daughter, daughter-in-law with other members into three groups due to similarity in DBDI and global strain scores. The relationship between the patient with dementia and family caregiver affected the rating of the frequency but not the disturbance index of the DBDI (F = 4.78, p = 0.003 and F = 2.04, p = 0.11, respectively). Post hoc analysis with Scheffe´ test revealed that the relationship of daughter-in-law and other members had a higher frequency index than the relationship of husband and wife (mean difference = 11.32 3.17, p = 0.006). There was no difference in global strain score in various types of patient–caregiver relationship.
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Table 4 Regression model for behavioral and psychological symptoms of dementia and related factors. Model 1 Dependent variable
Intercept Female patients Moderate CDR Severe CDR Female caregivers Father–child Daughter-in-law/others MMSE Vascular dementia Model statistics Overall model F; d.f. p value Adjusted R2
Model 2 DBDI-f
Dependent variable DBDI-d
B
S.E.
9.45 6.53 10.35 14.77 4.75 8.26 4.45 -0.46
4.95 2.47 2.63 3.27 2.27 3.23 2.37 0.20
4.15
2.12
16.28; 8 <0.001 0.42
Intercept Female patients Moderate CDR Severe CDR Female caregivers Father-child MMSE unclassified dementia
B
S.E.
6.41 6.35 8.38 16.17 6.03 8.96 -0.51 8.83
6.16 2.89 3.25 3.99 2.47 3.89 0.25 4.62
11.31; 7 <0.001 0.302
Note: Reference groups in model 1 and 2: male patients, male caregivers, Alzheimer’s disease, illiteracy, very mild CDR stage and husband–wife relationship.
analysis and Scheffe´ post hoc test revealed a significant increase in the frequency index (F = 28.69, p < 0.001) and disturbance index (F = 19.48, p < 0.001) with advance in CDR staging (Fig. 1). Frequency and disturbance index of DBDI showed a significant positive correlation with the global stain score (r = 0.67, p < 0.01 and r = 0.66, p < 0.01, respectively) 3.5. Multivariate analysis of the relation between BPSD and variables
3.4. Relationships between BPSD, severity of dementia, cognitive function, and caregiver strain Frequency and disturbance index of DBDI had a significant positive correlation with the CDR (r = 0.63, p < 0.001 and r = 0.55, p < 0.001, respectively), and a significant negative correlation with the MMSE (r = 0.52, p < 0.001 and r = 0.45, p < 0.001, respectively). Except for the very mild and mild CDR stage, ANOVA
We applied backward stepwise multiple regression to examine the relationship between the frequency and disturbance index of the DBDI and independent variables evaluated in this study. Categorical variables were transformed into dummy variables using binary coding. Male patients, male caregivers, a diagnosis of AD, illiteracy, a very mild CDR stage, and a husband-and-wife relation were set as reference groups. With the frequency index of DBDI serving as the independent variable, seven variables including female patients, female caregivers, moderate and severe CDR stages, a father-and-child relationship, a daughter-in-lawand-others relationship, a diagnosis of VaD, and MMSE score were included in the final model. This model explained 44.9% of the total variance (R2 = 0.449, F = 16.28, p < 0.001). Tolerances of all variables in the model were greater than 0.4, indicating no multicollinearity among variables. Using the disturbance index of DBDI as the dependent variable, we obtained another regression model (Table 4), which explained 30.6% of the total variance (R2 = 0.331, F = 11.31, p < 0.001). Female patients, female caregivers, moderate and severe CDR stages, a father-and-child relationship, unclassified dementia, and MMSE score were included in the final model. Tolerances of all variables in the second model were greater than 0.4, also indicating no multicollinearity among variables.
4. Discussion
Fig. 1. Frequency and disturbance index of DBDI in different CDR stages.
Our results confirmed the reliability and validity of the DBDI. The trend of increase in the frequency and disturbance index of the DBDI with advance in CDR staging and the high correlation between the indices of the DBDI and the MMSE scores reflect convergent validity of the DBDI. The high correlation between the DBDI and the global strain index implied that the DBDI succeeds in assessing behaviors that have major impact on caregivers, the major objective of this instrument. Both the frequency and the
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disturbance scales have good internal consistency reliability measured by Cronbach’s a statistics. Improper sexual behaviors became a unique factor identified by factor analysis of our data. Sexual behavior is not a distinct dimension in most of the neuropsychiatric evaluation instruments available in the literature. Our finding reflected cultural difference between Chinese and Western society where sexual behaviors are a stigma in a Chinese society. Caregivers may feel ashamed of revealing improper sexual behaviors of their family members. It was well known that BPSD were more frequently observed in certain types of dementia such as Lewy bodies dementia and VaD (Ballard et al., 1995; Chiu et al., 2006). In our study, VaD has a higher frequency index of the DBDI than AD (the reference group in the multiple regression model), which is consistent with the findings in the literature. There was no consensus in the relationship between cognitive function and BPSD. The association ranged from no association to positive, negative, or mixed findings. Some early studies found no association (Kotrla et al., 1995; Lam et al., 2006), while some recent studies did observe an association (Cummings 2000; Harwood et al., 2000) between cognitive changes and BPSD, and a recent study discovered that depressive mood, physical aggression, and wandering are statistically associated with the severity of AD (Hamumo et al., 2007). In our study, both the frequency and disturbance index of the DBDI were moderately and negatively correlated to the MMSE score. Apart from the above arguments, in our study, selection bias should not be ruled out, since patients with both cognitive and behavioral problems were more likely to be identified and followed up at neurological clinics. As for the relation between BPSD and cognitive function, there was no constant pattern between BPSD and severity of dementia. Previous research found that some symptoms occurred more frequently at the moderate to moderate–severe stage of dementia. A trend of increasing frequency of delusions, hallucinations and aberrant motor activity was observed with the progress of dementia (Piccininni et al., 2005). Variations among studies may come from differences in study population, methods of assessment, types of dementia, and physical functions. In our previous study, we observed more BPSD among ambulated patients than among institutional patients with dementia who had difficulty in walking. Deterioration in physical function at an advanced stage of dementia may prevent the occurrence of some behavioral symptoms such as wandering. It is possible that patients recruited in our present study had a relatively better physical function than those in other previous studies, so that a decrease in BPSD at the advanced stage of dementia could not be observed. Although there were several self-administered BPSD assessment instruments available, the influence of rater characteristics on the rating results was seldom explored. In this study, some rater characteristics are independent predictors of BPSD identified by multivariate analysis. Female caregivers, a father-and-child relationship, and a daughter-in-law-and-others relationship were associated with more BPSD compared with the reference groups. Female caregivers, and a father-and-child relationship were associated with more disturbance in BPSD compared with the reference group. A simple explanation to the above observations is difficult. Biases may come from the ability of the caregivers to recognize behavioral change, difference in tolerance to patients’ behaviors, and the concern of patients’ condition. Moreover, BPSD may be the result of the interaction between the patients and the environment (Eriksson, 2000). Behavioral changes with the change in caregivers and environment may compromise the reliability of the BPSD assessment instruments. The caregiver factor should be taken into consideration when using family caregiver as a source of information about BPSD. Future studies should explore which
kinds of caregivers’ characteristics may affect the assessment of BPSD, their nature, and the extent of influence. Our study recruited only a small number of patients and their caregivers. Most of the patients have AD or VaD and are at a mild or very mild stage of dementia. Caution must be taken when generalizing our results to other patient groups. However, our results highlight the importance of caregiver factors in the evaluation of BPSD. 5. Conclusions Our study verified the applicability of using DBDI as a selfadministered measure by literate family caregivers to evaluate BPSD in patients with dementia living in the community. For illiterate family caregivers, the questionnaire can be completed with assistance. Since the median time for the completion of the frequency and disturbance scales of the DBDI was about 15 minutes, it was acceptable to all caregivers. Conflicts of interest statement None. Acknowledgments We would like to take this opportunity to thank all patients and caregivers who participated in this study. This study had received an IRB approval from the ethical committee of the National Taiwan University Hospital. References Ballard, C.G., Saad, K., Patel, A., Gahir, M., Solis, M., Coope, B., Wilcock, G., 1995. The prevalence and phenomenology of psychotic symptoms in dementia sufferers. Int. J. Geriatr. Psychiatry 10, 477–485. Chiu, M.J., Chen, T.F., Yip, P.K., Hua, M.S., Tang, L.Y., 2006. Behavioral and psychologic symptoms in different types of dementia. J. Formos. Med. Assoc. 105, 556–562. Chow, J., Borson, S., Scanlan, J., 2000. Stage-specific prevalence of behavioral symptoms in Alzheimer’s disease in a multi-ethnic community sample. Am. J. Geriatr. Psychiatry 8, 123–133. Chow, T.W., Liu, C.K., Fuh, J.L., Leung, V.P., Tai, C.T., Chen, L.W., Wang, S.J., Chiu, H.F., Lam, L.C., Chen, Q.L., Cummings, J.L., 2002. Neuropsychiatric symptoms of Alzheimer’s disease differ in Chinese and American patients. Int. J. Geriatr. Psychiatry 17, 22–28. Duachman, D.A., Swearer, J.M., O’Donnell, B.F., Mitchell, A.L., Maloon, A., 1992. The caretaker Obstreperous Behavior Rating Assessment (COBRA) Scale. J. Am. Geriatr. Soc. 40, 463–480. Eriksson, S., 2000. Impact of the environment on behavioral and psychological symptoms of dementia. Int. Psychogeriatr. 12, 83–88. Finkel, S., Burns, A., Cohen, G., 2000. Behavioral and psychological symptoms of dementia (BPSD): a clinical and research update, overview. Int. Psychogeriatr. 12, 13–18. Gaugler, J.E., Edwards, A.B., Femia, E.E., Zarit, S.H., Stephens, M.A., Townsend, A., Greene, R., 2000. Predictors of institutionalization of cognitively impaired elders: Family help and the timing of placement. J. Gerontol. B: Psychol. Sci. Soc. Sci. 55, P247–P255. Harwood, D.G., Barker, W.W., Ownby, R.L., Duara, R., 2000. Relationship of behavioral and psychological symptoms to cognitive impairment and functional status in Alzheimer’s disease. Int. J. Geriatr. Psychiatry 15, 393–400. Kang, S.J., Choi, S.H., Lee, B.H., Jeong, Y., Hahm, D.S., Han, I.W., Cummings, J.L., Na, D.L., 2004. Caregivers-administered neuropsychiatric inventory (CGA-NPI). J. Geriatr. Psychiatry Neurol. 17, 32–35. Kotrla, K.J., Chacko, R.C., Harper, R.G., Doody, R., 1995. Clinical variables associated with psychosis in Alzheimer’s disease. Am. J. Psychiatry 152, 1377–1379. Lam, L.C., Leung, T., Lui, V.W., Leung, V.P., Chiu, H.F., 2006. Association between cognitive function, behavioral syndromes and two-year clinical outcome in Chinese subjects with late-onset Alzheimer’s disease. Int. Psychogeriatr. 18, 517–526. Matsumoto, N., Ikeda, M., Fukuhara, R., Shinagawa, S., Ishikawa, T., Mori, T., Toyota, Y., Matsumoto, T., Adachi, H., Hirono, N., Tanabe, H., 2007. Caregiver burden associated with behavioral and psychological symptoms of dementia in elderly people in the local community. Dement. Geriatr. Cogn. Disord. 23, 219–224. Murman, D.L., Chen, Q., Colucci, P.M., Colenda, C.C., Gelb, D.J., Liang, J., 2002. Comparison of healthcare utilization and direct costs in three degenerative dementias. Am. J. Geriatr. Psychiatry 10, 328–336.
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