Research in Developmental Disabilities 35 (2014) 632–638
Contents lists available at ScienceDirect
Research in Developmental Disabilities
Onset aging conditions of adults with an intellectual disability associated with primary caregiver depression Lan-Ping Lin a,b,1, Shang-Wei Hsu c,d,1, Meng-Ting Kuo a, Jia-Lin Wu e, Cordia Chu a,f, Jin-Ding Lin a,e,f,* a
School of Public Health, National Defense Medical Center, Taipei City, Taiwan Department of Senior Citizen Service Management, Ching-Kuo Institute of Management and Health, Keelung City, Taiwan Department of Healthcare Administration, Asia University, Taichung City, Taiwan d Department of Public Health, China Medical University, Taichung City, Taiwan e Chung-Hua Foundation for Persons with Intellectual Disabilities, New Taipei City, Taiwan f Centre for Environment and Population Health, Griffith University, Brisbane, Australia b c
A R T I C L E I N F O
A B S T R A C T
Article history: Received 15 November 2013 Received in revised form 30 December 2013 Accepted 30 December 2013 Available online 24 January 2014
Caregivers of adults with an intellectual disability experience depressive symptoms, but the aging factors of the care recipients associated with the depressive symptoms are unknown. The objective of this study was to analyze the onset aging conditions of adults with an intellectual disability that associated with the depression scores of their primary caregivers. A cross-sectional survey was administered to gather information from 455 caregivers of adults with an intellectual disability about their symptoms of depression which assessed by a 9-item Patient Health Questionnaire (PHQ-9). The 12 aging conditions of adults with an intellectual disability include physical and mental health. The results indicate that 78% of adults with an intellectual disability demonstrate aging conditions. Physical conditions associated with aging include hearing decline (66.3%), vision decline (63.6%), incontinence (44%), articulation and bone degeneration (57.9%), teeth loss (80.4), physical strength decline (81.2%), sense of taste and smell decline (52.8%), and accompanied chronic illnesses (74.6%). Mental conditions associated with aging include memory loss (77%), language ability deterioration (74.4%), poor sleep quality (74.2%), and easy onset of depression and sadness (50.3%). Aging conditions of adults with an intellectual disability (p < 0.001) was one factor that significantly affected the presence of depressive symptom among caregivers after controlling demographic characteristics. Particularly, poor sleep quality of adults with an intellectual disability (yes vs. no, OR = 3.807, p = 0.002) was statistically correlated to the occurrence of significant depressive symptoms among their caregivers. This study suggests that the authorities should reorient community services and future policies toward the needs of family caregivers to decrease the burdens associated with caregiving. ß 2014 Elsevier Ltd. All rights reserved.
Keywords: Aging Patient Health Questionnaire PHQ-9 Intellectual disability Caregiver Depression Mental health
1. Introduction Gallagher, Phillips, Oliver, and Carroll (2008) reported that parents of children with an intellectual disability (ID) registered high depression and anxiety scores, and the majority met the criteria for possible clinical depression and/or
* Corresponding author at: School of Public Health, National Defense Medical Center, No. 161, Min-Chun East Road, Section 6, Nei-Hu, Taipei, Taiwan. Tel.: +886 2 87923100x18447; fax: +886 2 87923147. E-mail addresses: [email protected], [email protected] (J.-D. Lin). 1 Contributed equally to this paper. 0891-4222/$ – see front matter ß 2014 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ridd.2013.12.013
L.-P. Lin et al. / Research in Developmental Disabilities 35 (2014) 632–638
633
anxiety. They found that the strongest predictor of psychological morbidity was caregiver burden. Although caregiving is a normal part of being the parent of a child, this role takes on an entirely different significance when a child experiences functional limitations and possible long-term dependence (Raina et al., 2005). The task of caring for a child with complex disabilities at home may be somewhat daunting for caregivers, and the provision of such care may prove detrimental to both the physical health and the psychological well-being of parents of children with chronic disabilities (Raina et al., 2005). Depression or mental illness has a strong impact on the quality of life of caregivers with children with an ID. Bailey, Golden, Roberts, and Ford (2007) concluded that there were relatively few studies about clinical depression among caregivers of children with disabilities, and thus, they suggested that future research should incorporate gold standard diagnostic tools and assess the history, severity, and type of depression. People with an ID are more likely to have poorer health, which includes physical and/or mental illnesses, than the general population of a society (Bebbington, Glasson, Bourke, de Klerk, & Leonard et al., 2013; Hsu, Lin, Chiang, Chang, & Tung, 2012a; Lin, Wu, & Lee, 2003, 2010a, 2011a, 2011b; Lin & Lin, 2011; Phelps, Pinter, Lollar, Medlen, & Bethell, 2012; Salvador-Carulla et al., 2013; Schieve et al., 2012) and their caregivers may experience many burdens associated with caring the daily living needs of those with an ID (Lee et al., 2009; Lin, Lin, & Wu, 2009a, 2009b, 2010b). While the caregivers of adults with an ID may experience depressive symptoms, the association between the aging factors of the care recipients and the caregiver’s depressive symptoms are unknown (Lin, Hsia, Hsu, Loh, Wu, & Lin, 2013; Lin, Lin, Kuo, Hsu, & Lee et al., 2014). The objective of this study is to analyze the impact that the onset of aging conditions of adults with an ID has on the depression scores of the primary caregivers.
2. Methods This study used a cross-sectional survey to gather information from 455 caregivers of adults with an ID who were aged 45 years or more and the symptoms of depression experienced by the caregivers based on the 9-item Patient Health Questionnaire (PHQ-9) (score 3 10 is the cut-off point for depressive symptoms). The detail sampling procedure, characteristics of caregivers and their depressive conditions were described in our previous paper (Lin et al., 2014). Study subjects were stratified by administrative area and selected systematically according to the proportion of the population with ID in each area in Taiwan. Those ID participants were classified and defined by healthcare authorities, and then registered by the social welfare authorities in the administrative procedure (Protection Law for the Handicapped and Mentally Disabled, 1997). The definition of ID is characterized by the presence of significant intellectual retardation or incomplete development of mental development in the growth period, and often exists concurrently with related limitations in areas such as recognition, ability and social adaptation skills (Lin, 2003). The present paper aims to focus on the association of the aging conditions of adults with an ID and the occurrence of depressive symptoms among their caregivers. We designed the aging conditions of adults with an ID to include two categories – physical and mental health – that contain 12 conditions. The content validity was reviewed by five experts. Physical conditions associated with aging include eight function losses or declines: hearing decline, vision decline, incontinence, articulation and bone degeneration, teeth loss, physical strength decline, senses of taste and smell decline, and accompanied by an increase in chronic diseases. Mental conditions associated with aging include memory loss, language ability deterioration, poor sleep quality, easy onset of depressive symptoms and tearing. The study also collected demographic data of adults with an ID. The data included age, gender, educational level, marital status, living arrangement, comorbid condition of Down syndrome, and level of disability. Data were analyzed using SPSS 20.0 software, and the main methods included number, percent, range, standard deviation, chi-square test, and the logistic regression model to evaluate the association between caregiver’s depressive symptom score (PHQ-9 score) and aging characteristics of adults with an ID.
3. Results 3.1. Demographic characteristics of adults with an ID Table 1 shows the demographic characteristics of adults with an ID. Male and female subjects in the study were almost equal (51% vs. 49%), the average age was 55.1 years and 42.2% of the respondents were aged above 55 years. Fifty percent of the adults with an ID were illiterate, and sixty-four percent were unmarried. Eighty-five percent of adults with an ID were living with families. With regards to their disability level, 49.7% were classified as mild or moderate, while 50.3% were diagnosed with a severe or profound disability. Of the adults with an ID, 7.1% ID were also diagnosed with Down’s syndrome. 3.2. Distribution of aging conditions of adults with an ID Table 2 shows the distribution of general aging conditions of adults with an ID. The results indicate that 78% of the adults with an ID demonstrated aging conditions that included physical or mental components. Physical conditions associated with aging among adults with an ID included hearing decline (66.3%), vision decline (63.6%), incontinence (44%), articulation and bone degeneration (57.9%), teeth loss (80.4), physical strength decline (81.2%), senses of taste and smell decline (52.8%), and an increase in chronic illnesses (74.6%). Mental conditions associated with aging among adults with an ID included memory
634
L.-P. Lin et al. / Research in Developmental Disabilities 35 (2014) 632–638
Table 1 Demographic characteristics of adults with an ID (n = 455). Variable Gender (n = 455) Male Female Age (n = 448) < 55 years 3 55 years Educational level (n = 454) Illiterate Elementary school or beyond Marital status (n = 450) Unmarried Married Living arrangement (n = 451) With family Not with family Down’s syndrome (n = 421) No Yes Level of disability (n = 449) Mild or moderate Severe or profound
n
%
Mean S.D. (range)
232 223
51.0 49.0
259 189
57.8 42.2
230 224
50.7 49.3
288 162
64.0 36.0
384 67
85.1 14.9
391 30
92.9 7.1
223 226
49.7 50.3
55.1 7.7 (45.5–85.7)
Table 2 Aging conditions among adults with an ID (n = 352). Types of aging conditions Conditions associated with aging (n = 451) Yes No Physical conditions associated with aging 1. Hearing decline (n = 320) Yes No 2. Vision decline (n = 316) Yes No 3. Incontinence (n = 348) Yes No 4. Articulation and bone degeneration (n = 328) Yes No 5. Teeth loss (n = 332) Yes No 6. Physical strength decline (n = 340) Yes No 7. Senses of taste and smell decline (n = 316) Yes No 8. Increase in chronic illnesses (n = 334) Yes No Psychological conditions associated with aging 1. Memory loss (n = 343) Yes No 2. Language ability deterioration (n = 340) Yes No 3. Poor sleep quality (n = 345) Yes No 4. Easy onset of depression and tearing (n = 338) Yes No
n
%
352 99
78.0 22.0
212 108
66.3 33.8
201 115
63.6 36.4
153 195
44.0 56.0
190 138
57.9 42.1
267 65
80.4 19.6
276 64
81.2 18.8
167 149
52.8 47.2
249 85
74.6 25.4
264 79
77.0 23.0
253 87
74.4 25.6
256 89
74.2 25.8
170 168
50.3 49.7
L.-P. Lin et al. / Research in Developmental Disabilities 35 (2014) 632–638
635
Table 3 Relation of demographic characteristics of adults with ID and depression conditions of caregivers (n = 455). Variable
Gender (n = 455) Male Female Age (n = 448) < 55 years 3 55 years Educational level (n = 454) Illiterate Elementary school or beyond Marital status (n = 450) Unmarried Married Living arrangement (n = 451) With family Not with family Down’s syndrome (n = 421) No Yes Level of disability (n = 449) Mild or moderate Severe or profound Aging conditions (n = 451) Yes No
With depression (score 3 10)
Without depression (score < 10) n
%
n
%
161 169
69.4 75.8
71 54
30.6 24.2
186 140
71.8 74.1
73 49
28.2 25.9
163 166
70.9 74.1
67 58
29.1 25.9
209 117
72.6 72.2
79 45
27.4 27.8
279 50
72.7 74.6
105 17
27.3 25.4
294 21
75.2 70.0
97 9
24.8 30.0
164 161
73.5 71.2
59 65
26.5 28.8
237 90
67.3 90.9
115 9
32.7 9.1
x2 (p Value)
2.329 0.127 0.281 0.596 0.596 0.440 0.006 0.937 0.112 0.738 0.399 0.528 0.298 0.585 21.550
Contents lists available at ScienceDirect
Research in Developmental Disabilities
Onset aging conditions of adults with an intellectual disability associated with primary caregiver depression Lan-Ping Lin a,b,1, Shang-Wei Hsu c,d,1, Meng-Ting Kuo a, Jia-Lin Wu e, Cordia Chu a,f, Jin-Ding Lin a,e,f,* a
School of Public Health, National Defense Medical Center, Taipei City, Taiwan Department of Senior Citizen Service Management, Ching-Kuo Institute of Management and Health, Keelung City, Taiwan Department of Healthcare Administration, Asia University, Taichung City, Taiwan d Department of Public Health, China Medical University, Taichung City, Taiwan e Chung-Hua Foundation for Persons with Intellectual Disabilities, New Taipei City, Taiwan f Centre for Environment and Population Health, Griffith University, Brisbane, Australia b c
A R T I C L E I N F O
A B S T R A C T
Article history: Received 15 November 2013 Received in revised form 30 December 2013 Accepted 30 December 2013 Available online 24 January 2014
Caregivers of adults with an intellectual disability experience depressive symptoms, but the aging factors of the care recipients associated with the depressive symptoms are unknown. The objective of this study was to analyze the onset aging conditions of adults with an intellectual disability that associated with the depression scores of their primary caregivers. A cross-sectional survey was administered to gather information from 455 caregivers of adults with an intellectual disability about their symptoms of depression which assessed by a 9-item Patient Health Questionnaire (PHQ-9). The 12 aging conditions of adults with an intellectual disability include physical and mental health. The results indicate that 78% of adults with an intellectual disability demonstrate aging conditions. Physical conditions associated with aging include hearing decline (66.3%), vision decline (63.6%), incontinence (44%), articulation and bone degeneration (57.9%), teeth loss (80.4), physical strength decline (81.2%), sense of taste and smell decline (52.8%), and accompanied chronic illnesses (74.6%). Mental conditions associated with aging include memory loss (77%), language ability deterioration (74.4%), poor sleep quality (74.2%), and easy onset of depression and sadness (50.3%). Aging conditions of adults with an intellectual disability (p < 0.001) was one factor that significantly affected the presence of depressive symptom among caregivers after controlling demographic characteristics. Particularly, poor sleep quality of adults with an intellectual disability (yes vs. no, OR = 3.807, p = 0.002) was statistically correlated to the occurrence of significant depressive symptoms among their caregivers. This study suggests that the authorities should reorient community services and future policies toward the needs of family caregivers to decrease the burdens associated with caregiving. ß 2014 Elsevier Ltd. All rights reserved.
Keywords: Aging Patient Health Questionnaire PHQ-9 Intellectual disability Caregiver Depression Mental health
1. Introduction Gallagher, Phillips, Oliver, and Carroll (2008) reported that parents of children with an intellectual disability (ID) registered high depression and anxiety scores, and the majority met the criteria for possible clinical depression and/or
* Corresponding author at: School of Public Health, National Defense Medical Center, No. 161, Min-Chun East Road, Section 6, Nei-Hu, Taipei, Taiwan. Tel.: +886 2 87923100x18447; fax: +886 2 87923147. E-mail addresses: [email protected], [email protected] (J.-D. Lin). 1 Contributed equally to this paper. 0891-4222/$ – see front matter ß 2014 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ridd.2013.12.013
L.-P. Lin et al. / Research in Developmental Disabilities 35 (2014) 632–638
633
anxiety. They found that the strongest predictor of psychological morbidity was caregiver burden. Although caregiving is a normal part of being the parent of a child, this role takes on an entirely different significance when a child experiences functional limitations and possible long-term dependence (Raina et al., 2005). The task of caring for a child with complex disabilities at home may be somewhat daunting for caregivers, and the provision of such care may prove detrimental to both the physical health and the psychological well-being of parents of children with chronic disabilities (Raina et al., 2005). Depression or mental illness has a strong impact on the quality of life of caregivers with children with an ID. Bailey, Golden, Roberts, and Ford (2007) concluded that there were relatively few studies about clinical depression among caregivers of children with disabilities, and thus, they suggested that future research should incorporate gold standard diagnostic tools and assess the history, severity, and type of depression. People with an ID are more likely to have poorer health, which includes physical and/or mental illnesses, than the general population of a society (Bebbington, Glasson, Bourke, de Klerk, & Leonard et al., 2013; Hsu, Lin, Chiang, Chang, & Tung, 2012a; Lin, Wu, & Lee, 2003, 2010a, 2011a, 2011b; Lin & Lin, 2011; Phelps, Pinter, Lollar, Medlen, & Bethell, 2012; Salvador-Carulla et al., 2013; Schieve et al., 2012) and their caregivers may experience many burdens associated with caring the daily living needs of those with an ID (Lee et al., 2009; Lin, Lin, & Wu, 2009a, 2009b, 2010b). While the caregivers of adults with an ID may experience depressive symptoms, the association between the aging factors of the care recipients and the caregiver’s depressive symptoms are unknown (Lin, Hsia, Hsu, Loh, Wu, & Lin, 2013; Lin, Lin, Kuo, Hsu, & Lee et al., 2014). The objective of this study is to analyze the impact that the onset of aging conditions of adults with an ID has on the depression scores of the primary caregivers.
2. Methods This study used a cross-sectional survey to gather information from 455 caregivers of adults with an ID who were aged 45 years or more and the symptoms of depression experienced by the caregivers based on the 9-item Patient Health Questionnaire (PHQ-9) (score 3 10 is the cut-off point for depressive symptoms). The detail sampling procedure, characteristics of caregivers and their depressive conditions were described in our previous paper (Lin et al., 2014). Study subjects were stratified by administrative area and selected systematically according to the proportion of the population with ID in each area in Taiwan. Those ID participants were classified and defined by healthcare authorities, and then registered by the social welfare authorities in the administrative procedure (Protection Law for the Handicapped and Mentally Disabled, 1997). The definition of ID is characterized by the presence of significant intellectual retardation or incomplete development of mental development in the growth period, and often exists concurrently with related limitations in areas such as recognition, ability and social adaptation skills (Lin, 2003). The present paper aims to focus on the association of the aging conditions of adults with an ID and the occurrence of depressive symptoms among their caregivers. We designed the aging conditions of adults with an ID to include two categories – physical and mental health – that contain 12 conditions. The content validity was reviewed by five experts. Physical conditions associated with aging include eight function losses or declines: hearing decline, vision decline, incontinence, articulation and bone degeneration, teeth loss, physical strength decline, senses of taste and smell decline, and accompanied by an increase in chronic diseases. Mental conditions associated with aging include memory loss, language ability deterioration, poor sleep quality, easy onset of depressive symptoms and tearing. The study also collected demographic data of adults with an ID. The data included age, gender, educational level, marital status, living arrangement, comorbid condition of Down syndrome, and level of disability. Data were analyzed using SPSS 20.0 software, and the main methods included number, percent, range, standard deviation, chi-square test, and the logistic regression model to evaluate the association between caregiver’s depressive symptom score (PHQ-9 score) and aging characteristics of adults with an ID.
3. Results 3.1. Demographic characteristics of adults with an ID Table 1 shows the demographic characteristics of adults with an ID. Male and female subjects in the study were almost equal (51% vs. 49%), the average age was 55.1 years and 42.2% of the respondents were aged above 55 years. Fifty percent of the adults with an ID were illiterate, and sixty-four percent were unmarried. Eighty-five percent of adults with an ID were living with families. With regards to their disability level, 49.7% were classified as mild or moderate, while 50.3% were diagnosed with a severe or profound disability. Of the adults with an ID, 7.1% ID were also diagnosed with Down’s syndrome. 3.2. Distribution of aging conditions of adults with an ID Table 2 shows the distribution of general aging conditions of adults with an ID. The results indicate that 78% of the adults with an ID demonstrated aging conditions that included physical or mental components. Physical conditions associated with aging among adults with an ID included hearing decline (66.3%), vision decline (63.6%), incontinence (44%), articulation and bone degeneration (57.9%), teeth loss (80.4), physical strength decline (81.2%), senses of taste and smell decline (52.8%), and an increase in chronic illnesses (74.6%). Mental conditions associated with aging among adults with an ID included memory
634
L.-P. Lin et al. / Research in Developmental Disabilities 35 (2014) 632–638
Table 1 Demographic characteristics of adults with an ID (n = 455). Variable Gender (n = 455) Male Female Age (n = 448) < 55 years 3 55 years Educational level (n = 454) Illiterate Elementary school or beyond Marital status (n = 450) Unmarried Married Living arrangement (n = 451) With family Not with family Down’s syndrome (n = 421) No Yes Level of disability (n = 449) Mild or moderate Severe or profound
n
%
Mean S.D. (range)
232 223
51.0 49.0
259 189
57.8 42.2
230 224
50.7 49.3
288 162
64.0 36.0
384 67
85.1 14.9
391 30
92.9 7.1
223 226
49.7 50.3
55.1 7.7 (45.5–85.7)
Table 2 Aging conditions among adults with an ID (n = 352). Types of aging conditions Conditions associated with aging (n = 451) Yes No Physical conditions associated with aging 1. Hearing decline (n = 320) Yes No 2. Vision decline (n = 316) Yes No 3. Incontinence (n = 348) Yes No 4. Articulation and bone degeneration (n = 328) Yes No 5. Teeth loss (n = 332) Yes No 6. Physical strength decline (n = 340) Yes No 7. Senses of taste and smell decline (n = 316) Yes No 8. Increase in chronic illnesses (n = 334) Yes No Psychological conditions associated with aging 1. Memory loss (n = 343) Yes No 2. Language ability deterioration (n = 340) Yes No 3. Poor sleep quality (n = 345) Yes No 4. Easy onset of depression and tearing (n = 338) Yes No
n
%
352 99
78.0 22.0
212 108
66.3 33.8
201 115
63.6 36.4
153 195
44.0 56.0
190 138
57.9 42.1
267 65
80.4 19.6
276 64
81.2 18.8
167 149
52.8 47.2
249 85
74.6 25.4
264 79
77.0 23.0
253 87
74.4 25.6
256 89
74.2 25.8
170 168
50.3 49.7
L.-P. Lin et al. / Research in Developmental Disabilities 35 (2014) 632–638
635
Table 3 Relation of demographic characteristics of adults with ID and depression conditions of caregivers (n = 455). Variable
Gender (n = 455) Male Female Age (n = 448) < 55 years 3 55 years Educational level (n = 454) Illiterate Elementary school or beyond Marital status (n = 450) Unmarried Married Living arrangement (n = 451) With family Not with family Down’s syndrome (n = 421) No Yes Level of disability (n = 449) Mild or moderate Severe or profound Aging conditions (n = 451) Yes No
With depression (score 3 10)
Without depression (score < 10) n
%
n
%
161 169
69.4 75.8
71 54
30.6 24.2
186 140
71.8 74.1
73 49
28.2 25.9
163 166
70.9 74.1
67 58
29.1 25.9
209 117
72.6 72.2
79 45
27.4 27.8
279 50
72.7 74.6
105 17
27.3 25.4
294 21
75.2 70.0
97 9
24.8 30.0
164 161
73.5 71.2
59 65
26.5 28.8
237 90
67.3 90.9
115 9
32.7 9.1
x2 (p Value)
2.329 0.127 0.281 0.596 0.596 0.440 0.006 0.937 0.112 0.738 0.399 0.528 0.298 0.585 21.550
