C International Psychogeriatric Association 2014 International Psychogeriatrics (2014), 26:10, 1639–1648 doi:10.1017/S1041610214001331
Effects of social supports on burden in caregivers of people with dementia ...........................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................
Ji Won Han,1 Hyeon Jeong,2 Jae Young Park,1 Tae Hui Kim,3 Dong Young Lee,4,5 Dong Woo Lee,6 Seung-Ho Ryu,7 Shin-Kyeom Kim,8 Jong Chul Yoon,9 JinHyeong Jhoo,10 Jeong Lan Kim,11 Seok Bum Lee,12 Jung Jae Lee,12 Kyung Phil Kwak,13 Bong-Jo Kim,14 Joon Hyuk Park15 and Ki Woong Kim1,5,16 1
Department of Neuropsychiatry, Seoul National University Bundang Hospital, Seongnam, South Korea Department of Psychiatry, Mirae Hospital, Gimje, South Korea 3 Department of Psychiatry, Yonsei University Wonju Severance Christian Hospital, Wonju, South Korea 4 Department of Neuropsychiatry, Seoul National University Hospital, Seoul, South Korea 5 Department of Psychiatry, Seoul National University, College of Medicine, Seoul, South Korea 6 Department of Neuropsychiatry, Inje University Sanggye Paik Hospital, Seoul, South Korea 7 Department of Psychiatry, School of Medicine, Konkuk University, Konkuk University Medical Center, Seoul, South Korea 8 Department of Neuropsychiatry, Soonchunhyang University Bucheon Hospital, Bucheon, South Korea 9 Department of Neuropsychiatry, Kyunggi Provincial Hospital for the Elderly, Yongin, South Korea 10 Department of Neuropsychiatry, Kangwon National University Hospital, Chuncheon, South Korea 11 Department of Psychiatry, Chungnam National University Hospital, Daejeon, South Korea 12 Department of Psychiatry, Dankook University Hospital, Cheonan, South Korea 13 Department of Psychiatry, Dongguk Medical Center, Gyeongju, South Korea 14 Department of Psychiatry, Gyeongsang National University, School of Medicine, Jinju, South Korea 15 Department of Neuropsychiatry, Jeju National University Hospital, Jeju, South Korea 16 Department of Brain and Cognitive Science, Seoul National University College of Natural Sciences, Seoul, South Korea 2
ABSTRACT
Background: Social support programs for dementia caregivers were widely used in order to reduce care burden. We investigated which types of social supports can reduce psychological and non-psychological burdens of dementia caregivers, and explored the mechanism of those social supports. Methods: We evaluated 731 community-dwelling dementia patients and their caregivers from the National Survey of Dementia Care in South Korea. We investigated the five types of social supports (emotional support, informational support, tangible support, positive social interaction, affectionate support) using the Medical Outcomes Study Social Support Survey in each caregiver. The mechanisms of specific types of social support on psychological/non-psychological burden were examined using path analysis. Results: Positive social interaction and affectionate support reduced psychological burden via direct and indirect paths. Tangible support reduced the non-psychological burden via direct and indirect paths. Informational support and emotional support were not helpful for reducing psychological or non-psychological burden. A maximum of 20% of psychological burden could be relieved by positive social interaction and 10.3% of that could be reduced by affectionate support. Tangible support was associated with a 15.1% maximal improvement in non-psychological burden. Conclusions: In order to reduce caregiver burden in dementia effectively, psychosocial interventions should be tailored to target type of caregiver burden. Key words: dementia care, social support, positive social interaction, affectionate support, caregiver burden, psychological burden, nonpsychological burden, path analysis
Correspondence should be addressed to: Ki Woong Kim, MD, PhD, Department of Neuropsychiatry, Seoul National University College of Medicine and Seoul National University Bundang Hospital, 166 Gumiro, Bundanggu, Seongnamsi, Gyeonggido 463–707, South Korea. Phone: +82-31-787-7432; Fax: +8231-787-4058. Email: [email protected]. Received 27 Feb 2014; revision requested 17 Mar 2014; revised version received 15 May 2014; accepted 4 Jun 2014. First published online 9 July 2014.
Introduction Caregiver burden in dementia is well known to occur at higher levels when compared to other medical illnesses (Schoenmakers et al., 2010) and to be associated with high medical
1640
J. W. Han et al.
comorbidity of caregivers. With the impending worldwide epidemic of dementia, caregiver burden has become one of the main concerns in the dementia clinic, and for researchers and healthcare policy-makers. There is a range of psychosocial interventions designed to reduce caregiver burden; these include education and training programs, support groups, counseling (Brodaty et al., 2003), and respite care (Acton and Kang, 2001). However, while most of these interventions are effective in reducing psychological distress or depressive mood (Brodaty et al., 2003; Chu et al., 2011), they do not reduce global care burden (Acton and Kang, 2001; Schoenmakers et al., 2010; Chu et al., 2011), thus indicating that the construct of caregiver burden may be multidimensional and that nonpsychological burden may require different types of interventions than does psychological burden (Ankri et al., 2005). Therefore, to improve their efficacy, psychosocial interventions should be tailored to the different dimensions of caregiver burden. However, there is little research investigating which component of psychosocial intervention can reduce these different dimensions of caregiver burden in dementia. In this study, we used the concepts of social supports from the Medical Outcomes Study Social Support Survey (MOS-SSS; Sherbourne and Stewart, 1991) as components of psychosocial interventions. The MOS-SSS classified overall social support into five types because each type is known to be independent and could lead to different outcomes. The five types of the MOSSSS are as follows: (1) emotional support (which expresses positive affect, empathic understanding, and encouragement of expressions of feelings); (2) informational support (which offers advice, information, guidance, or feedback); (3) tangible support (which provides material aid or behavioral assistance); (4) positive social interaction (which means availability of other persons to do fun things with you); and (5) affectionate support (which involves expressions of love and affection; Sherbourne and Stewart, 1991). We investigated the types of social supports that may be helpful for reducing caregiver burden according to two dimensions (psychological vs. non-psychological), and explored the mechanism of how such social supports reduce each type of caregiver burden. The goal was to provide evidence for the tailoring of psychosocial interventions for caregivers of individuals with dementia and to show how psychosocial interventions can be made more effective.
Method Sample This study was part of the National Survey of Dementia Care in South Korea (NaSDeCK; Ministry of Health and Welfare, Republic of Korea, 2011), a nationwide survey on dementia care in elderly Koreans. We analyzed data from 731 pairs (n = 1,462) of community-dwelling dementia patients and their caregivers, sampled from among visitors to 13 dementia clinics between December 2010 and August 2011. All caregivers were living together with the dementia patients or visited them regularly (at least once per week). All participants were fully informed about the study protocol and provided written statements of informed consent signed by themselves or by their legal guardians. The study protocol was approved by The Institutional Review Board of Seoul National University Bundang Hospital, South Korea. Assessments Research geropsychiatrists evaluated each patient using the Korean version of the Consortium to Establish a Registry for Alzheimer’s Disease Assessment Packet Clinical Assessment Battery (CERADK-C; Lee et al., 2002). Dementia was diagnosed according to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) criteria (American Psychiatric Association, 1994); Alzheimer’s Disease (AD), according to the National Institute of Neurological and Communicative Disorders and Stroke and the Alzheimer’s Disease and Related Disorders Association (NINCDSADRDA) criteria (McKhann et al., 1984); and vascular dementia (VD), according to the National Institute of Neurological Disorders and Stroke-Association International pour la Recherche et l’Enseignement en Neurosciences (NINDSAIREN) criteria (Roman et al., 1993). We evaluated behavioral and psychological symptoms of dementia (BPSD) using the neuropsychiatric inventory (NPI-K; Cummings et al., 1994); activities of daily living (ADL) using the disability assessment for dementia (DAD; Gelinas et al., 1999); level of dependence using the Dependence scale (DS; Stern et al., 1994); comorbid chronic medical conditions using the Cumulative Illness Rating scale (CIRS; Miller et al., 1992); and global severity of dementia using the Clinical Dementia Rating (CDR; Hughes et al., 1982). We evaluated the attitude of the caregivers toward dementia using the Dementia Attitude scale (DAS) (O’Connor and McFadden, 2010), dysfunctional coping strategies of the caregivers
Social supports for caregiver burden in dementia
1641
Table 1. Factor analysis of the Zarit Burden Inventory – short form (ZBI-S) NONSCALE ITEMS
PSYCHOLOGICAL
EMOTIONAL
ROLE
BURDEN
DISTRESS
STRAIN
.........................................................................................................................................................................................................................................................................................................................
1. Do you feel that because of the time you spent with your relative that you do not have enough time for yourself? 2. Do you feel stressed between caring for your relative and trying to meet other responsibilities (work/family)? 3. Do you feel angry when you are around your relative? 4. Do you feel that your relative currently affects your relationship with family members or friends in a negative way? 5. Do you feel strained when you are around your relative? 6. Do you feel that your health has suffered because of your involvement with your relative? 7. Do you feel that you do not have as much privacy as you would like because of your relative? 8. Do you feel that your social life has suffered because you are caring for your relative? 9. Do you feel that you have lost control of your life since your relative’s illness? 10. Do you feel uncertain about what to do about your relative? 11. Do you feel you should be doing more for your relative? 12. Do you feel you could do a better job in caring for your relative? Percentage of variance explained
0.857
0.115
0.157
0.731
0.411
0.144
0.367 0.278
0.723 0.756
0.022 0.093
0.290 0.609
0.797 0.544
0.043 0.041
0.805
0.396
0.138
0.760
0.449
0.114
0.601
0.598
0.149
0.177 0.112 0.128
0.586 0.107 0.042
0.430 0.885 0.852
29.8
27.3
15.1
Note: Bold values indicate the items of each factor (non-psychological burden, emotional distress, role strain).
using the subscale of Brief-COPE (dys-B-COPE; Carver, 1997), and daily care activities using the Caregiver Activity Survey (CAS; Davis et al., 1997). We evaluated psychological care burden of the caregivers by using the short form Center for Epidemiologic Studies Depression scale (CES-D10; Kohout et al., 1993), and non-psychological burden by using the nonpsychological burden subscale (np-ZBI-s) extracted from the Zarit Burden Interview – Short Form (ZBI-s) using exploratory factor analysis (Bedard et al., 2001). Three factors were extracted by principal component analysis with varimax rotation. Bartlett’s test of sphericity was significant (x2 = 5389.9, p < 0.001) and the Kaiser–Meyer–Olkin (KMO) measure of sampling adequacy value was 0.92. The first factor defined as the “nonpsychological burden” consisted of six items and explained 29.8% of the variance. The second factor defined as the “emotional distress” consisted of three items and explained 27.3% of the variance. The third factor defined as the “role strain” consisted of two items and explained 15.1% of the variance. Cronbach’s α for the total scale was α = 0.913, and α = 0.924, α = 0.811, α = 0.752 for the three factors, respectively (see Table 1). We evaluated each caregiver’s five types of social supports (emotional support, informational
support, tangible support, positive social interaction, affectionate support) using the MOS-SSS (Sherbourne and Stewart, 1991). Statistical analysis We performed a stepwise multiple regression analysis to identify variables that determined the non-psychological and psychological burdens of caregivers. Independent variables were categorized according to one of four factors: Patient (age, gender, education, medical insurance, urban dwelling, type of dementia, CDR, duration of illness, CIRS, DAD, NPI), Caregiver (age, gender, education, relationship with the care recipient, medical insurance, certification of care manager, DAS, dys-B-COPE), Care Situation (duration of care, frequency of visit, daily caring time, number of care tasks), and Social Support (emotional support, informational support, tangible support, positive social interaction, affectionate support). Among these 28 independent variables, the variables in the final regression model advanced to the path analysis. Path analysis was then performed to examine the mechanisms of specific types of social support that predicted psychological/non-psychological burden in the stepwise multiple regression models. The significance level was set at p < 0.05. Path analysis was performed using SAS software,
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J. W. Han et al.
Table 2. Stepwise multiple regression model of variables determining psychological burden of caregivers (CES-D10) B
SE
BETA
t
p-V A L U E
PARTIAL
R2
.........................................................................................................................................................................................................................................................................................................................
Patient factor DAD NPI total score Caregiver factor Male gender dys-B-COPE DAS Care situation Frequency of visit Social support Positive social interaction Affectionate support
− 0.030 0.012
0.008 0.005
− 0.131 0.075
− 3.660 2.119
Effects of social supports on burden in caregivers of people with dementia ...........................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................
Ji Won Han,1 Hyeon Jeong,2 Jae Young Park,1 Tae Hui Kim,3 Dong Young Lee,4,5 Dong Woo Lee,6 Seung-Ho Ryu,7 Shin-Kyeom Kim,8 Jong Chul Yoon,9 JinHyeong Jhoo,10 Jeong Lan Kim,11 Seok Bum Lee,12 Jung Jae Lee,12 Kyung Phil Kwak,13 Bong-Jo Kim,14 Joon Hyuk Park15 and Ki Woong Kim1,5,16 1
Department of Neuropsychiatry, Seoul National University Bundang Hospital, Seongnam, South Korea Department of Psychiatry, Mirae Hospital, Gimje, South Korea 3 Department of Psychiatry, Yonsei University Wonju Severance Christian Hospital, Wonju, South Korea 4 Department of Neuropsychiatry, Seoul National University Hospital, Seoul, South Korea 5 Department of Psychiatry, Seoul National University, College of Medicine, Seoul, South Korea 6 Department of Neuropsychiatry, Inje University Sanggye Paik Hospital, Seoul, South Korea 7 Department of Psychiatry, School of Medicine, Konkuk University, Konkuk University Medical Center, Seoul, South Korea 8 Department of Neuropsychiatry, Soonchunhyang University Bucheon Hospital, Bucheon, South Korea 9 Department of Neuropsychiatry, Kyunggi Provincial Hospital for the Elderly, Yongin, South Korea 10 Department of Neuropsychiatry, Kangwon National University Hospital, Chuncheon, South Korea 11 Department of Psychiatry, Chungnam National University Hospital, Daejeon, South Korea 12 Department of Psychiatry, Dankook University Hospital, Cheonan, South Korea 13 Department of Psychiatry, Dongguk Medical Center, Gyeongju, South Korea 14 Department of Psychiatry, Gyeongsang National University, School of Medicine, Jinju, South Korea 15 Department of Neuropsychiatry, Jeju National University Hospital, Jeju, South Korea 16 Department of Brain and Cognitive Science, Seoul National University College of Natural Sciences, Seoul, South Korea 2
ABSTRACT
Background: Social support programs for dementia caregivers were widely used in order to reduce care burden. We investigated which types of social supports can reduce psychological and non-psychological burdens of dementia caregivers, and explored the mechanism of those social supports. Methods: We evaluated 731 community-dwelling dementia patients and their caregivers from the National Survey of Dementia Care in South Korea. We investigated the five types of social supports (emotional support, informational support, tangible support, positive social interaction, affectionate support) using the Medical Outcomes Study Social Support Survey in each caregiver. The mechanisms of specific types of social support on psychological/non-psychological burden were examined using path analysis. Results: Positive social interaction and affectionate support reduced psychological burden via direct and indirect paths. Tangible support reduced the non-psychological burden via direct and indirect paths. Informational support and emotional support were not helpful for reducing psychological or non-psychological burden. A maximum of 20% of psychological burden could be relieved by positive social interaction and 10.3% of that could be reduced by affectionate support. Tangible support was associated with a 15.1% maximal improvement in non-psychological burden. Conclusions: In order to reduce caregiver burden in dementia effectively, psychosocial interventions should be tailored to target type of caregiver burden. Key words: dementia care, social support, positive social interaction, affectionate support, caregiver burden, psychological burden, nonpsychological burden, path analysis
Correspondence should be addressed to: Ki Woong Kim, MD, PhD, Department of Neuropsychiatry, Seoul National University College of Medicine and Seoul National University Bundang Hospital, 166 Gumiro, Bundanggu, Seongnamsi, Gyeonggido 463–707, South Korea. Phone: +82-31-787-7432; Fax: +8231-787-4058. Email: [email protected]. Received 27 Feb 2014; revision requested 17 Mar 2014; revised version received 15 May 2014; accepted 4 Jun 2014. First published online 9 July 2014.
Introduction Caregiver burden in dementia is well known to occur at higher levels when compared to other medical illnesses (Schoenmakers et al., 2010) and to be associated with high medical
1640
J. W. Han et al.
comorbidity of caregivers. With the impending worldwide epidemic of dementia, caregiver burden has become one of the main concerns in the dementia clinic, and for researchers and healthcare policy-makers. There is a range of psychosocial interventions designed to reduce caregiver burden; these include education and training programs, support groups, counseling (Brodaty et al., 2003), and respite care (Acton and Kang, 2001). However, while most of these interventions are effective in reducing psychological distress or depressive mood (Brodaty et al., 2003; Chu et al., 2011), they do not reduce global care burden (Acton and Kang, 2001; Schoenmakers et al., 2010; Chu et al., 2011), thus indicating that the construct of caregiver burden may be multidimensional and that nonpsychological burden may require different types of interventions than does psychological burden (Ankri et al., 2005). Therefore, to improve their efficacy, psychosocial interventions should be tailored to the different dimensions of caregiver burden. However, there is little research investigating which component of psychosocial intervention can reduce these different dimensions of caregiver burden in dementia. In this study, we used the concepts of social supports from the Medical Outcomes Study Social Support Survey (MOS-SSS; Sherbourne and Stewart, 1991) as components of psychosocial interventions. The MOS-SSS classified overall social support into five types because each type is known to be independent and could lead to different outcomes. The five types of the MOSSSS are as follows: (1) emotional support (which expresses positive affect, empathic understanding, and encouragement of expressions of feelings); (2) informational support (which offers advice, information, guidance, or feedback); (3) tangible support (which provides material aid or behavioral assistance); (4) positive social interaction (which means availability of other persons to do fun things with you); and (5) affectionate support (which involves expressions of love and affection; Sherbourne and Stewart, 1991). We investigated the types of social supports that may be helpful for reducing caregiver burden according to two dimensions (psychological vs. non-psychological), and explored the mechanism of how such social supports reduce each type of caregiver burden. The goal was to provide evidence for the tailoring of psychosocial interventions for caregivers of individuals with dementia and to show how psychosocial interventions can be made more effective.
Method Sample This study was part of the National Survey of Dementia Care in South Korea (NaSDeCK; Ministry of Health and Welfare, Republic of Korea, 2011), a nationwide survey on dementia care in elderly Koreans. We analyzed data from 731 pairs (n = 1,462) of community-dwelling dementia patients and their caregivers, sampled from among visitors to 13 dementia clinics between December 2010 and August 2011. All caregivers were living together with the dementia patients or visited them regularly (at least once per week). All participants were fully informed about the study protocol and provided written statements of informed consent signed by themselves or by their legal guardians. The study protocol was approved by The Institutional Review Board of Seoul National University Bundang Hospital, South Korea. Assessments Research geropsychiatrists evaluated each patient using the Korean version of the Consortium to Establish a Registry for Alzheimer’s Disease Assessment Packet Clinical Assessment Battery (CERADK-C; Lee et al., 2002). Dementia was diagnosed according to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) criteria (American Psychiatric Association, 1994); Alzheimer’s Disease (AD), according to the National Institute of Neurological and Communicative Disorders and Stroke and the Alzheimer’s Disease and Related Disorders Association (NINCDSADRDA) criteria (McKhann et al., 1984); and vascular dementia (VD), according to the National Institute of Neurological Disorders and Stroke-Association International pour la Recherche et l’Enseignement en Neurosciences (NINDSAIREN) criteria (Roman et al., 1993). We evaluated behavioral and psychological symptoms of dementia (BPSD) using the neuropsychiatric inventory (NPI-K; Cummings et al., 1994); activities of daily living (ADL) using the disability assessment for dementia (DAD; Gelinas et al., 1999); level of dependence using the Dependence scale (DS; Stern et al., 1994); comorbid chronic medical conditions using the Cumulative Illness Rating scale (CIRS; Miller et al., 1992); and global severity of dementia using the Clinical Dementia Rating (CDR; Hughes et al., 1982). We evaluated the attitude of the caregivers toward dementia using the Dementia Attitude scale (DAS) (O’Connor and McFadden, 2010), dysfunctional coping strategies of the caregivers
Social supports for caregiver burden in dementia
1641
Table 1. Factor analysis of the Zarit Burden Inventory – short form (ZBI-S) NONSCALE ITEMS
PSYCHOLOGICAL
EMOTIONAL
ROLE
BURDEN
DISTRESS
STRAIN
.........................................................................................................................................................................................................................................................................................................................
1. Do you feel that because of the time you spent with your relative that you do not have enough time for yourself? 2. Do you feel stressed between caring for your relative and trying to meet other responsibilities (work/family)? 3. Do you feel angry when you are around your relative? 4. Do you feel that your relative currently affects your relationship with family members or friends in a negative way? 5. Do you feel strained when you are around your relative? 6. Do you feel that your health has suffered because of your involvement with your relative? 7. Do you feel that you do not have as much privacy as you would like because of your relative? 8. Do you feel that your social life has suffered because you are caring for your relative? 9. Do you feel that you have lost control of your life since your relative’s illness? 10. Do you feel uncertain about what to do about your relative? 11. Do you feel you should be doing more for your relative? 12. Do you feel you could do a better job in caring for your relative? Percentage of variance explained
0.857
0.115
0.157
0.731
0.411
0.144
0.367 0.278
0.723 0.756
0.022 0.093
0.290 0.609
0.797 0.544
0.043 0.041
0.805
0.396
0.138
0.760
0.449
0.114
0.601
0.598
0.149
0.177 0.112 0.128
0.586 0.107 0.042
0.430 0.885 0.852
29.8
27.3
15.1
Note: Bold values indicate the items of each factor (non-psychological burden, emotional distress, role strain).
using the subscale of Brief-COPE (dys-B-COPE; Carver, 1997), and daily care activities using the Caregiver Activity Survey (CAS; Davis et al., 1997). We evaluated psychological care burden of the caregivers by using the short form Center for Epidemiologic Studies Depression scale (CES-D10; Kohout et al., 1993), and non-psychological burden by using the nonpsychological burden subscale (np-ZBI-s) extracted from the Zarit Burden Interview – Short Form (ZBI-s) using exploratory factor analysis (Bedard et al., 2001). Three factors were extracted by principal component analysis with varimax rotation. Bartlett’s test of sphericity was significant (x2 = 5389.9, p < 0.001) and the Kaiser–Meyer–Olkin (KMO) measure of sampling adequacy value was 0.92. The first factor defined as the “nonpsychological burden” consisted of six items and explained 29.8% of the variance. The second factor defined as the “emotional distress” consisted of three items and explained 27.3% of the variance. The third factor defined as the “role strain” consisted of two items and explained 15.1% of the variance. Cronbach’s α for the total scale was α = 0.913, and α = 0.924, α = 0.811, α = 0.752 for the three factors, respectively (see Table 1). We evaluated each caregiver’s five types of social supports (emotional support, informational
support, tangible support, positive social interaction, affectionate support) using the MOS-SSS (Sherbourne and Stewart, 1991). Statistical analysis We performed a stepwise multiple regression analysis to identify variables that determined the non-psychological and psychological burdens of caregivers. Independent variables were categorized according to one of four factors: Patient (age, gender, education, medical insurance, urban dwelling, type of dementia, CDR, duration of illness, CIRS, DAD, NPI), Caregiver (age, gender, education, relationship with the care recipient, medical insurance, certification of care manager, DAS, dys-B-COPE), Care Situation (duration of care, frequency of visit, daily caring time, number of care tasks), and Social Support (emotional support, informational support, tangible support, positive social interaction, affectionate support). Among these 28 independent variables, the variables in the final regression model advanced to the path analysis. Path analysis was then performed to examine the mechanisms of specific types of social support that predicted psychological/non-psychological burden in the stepwise multiple regression models. The significance level was set at p < 0.05. Path analysis was performed using SAS software,
1642
J. W. Han et al.
Table 2. Stepwise multiple regression model of variables determining psychological burden of caregivers (CES-D10) B
SE
BETA
t
p-V A L U E
PARTIAL
R2
.........................................................................................................................................................................................................................................................................................................................
Patient factor DAD NPI total score Caregiver factor Male gender dys-B-COPE DAS Care situation Frequency of visit Social support Positive social interaction Affectionate support
− 0.030 0.012
0.008 0.005
− 0.131 0.075
− 3.660 2.119
