Pilot testing the caregiver self-management intervention for caregivers of relatives with dementia

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Pilot testing the caregiver self-management intervention for caregivers of relatives with dementia Shu Ying Zhang, PhDa,*, Fan Wu, M.Meda, Dan Li Tang, M.Meda, Xiao Shan Rong, PhDa, Qi Hao Guo, MD, PhDb,*, Min Fang, MDc, Qian Hua Zhao, PhDd, Yan Xin Zhao, MD, PhDc,* a

Tongji University School of Medicine, Tongji University, 1239 Si Ping Road, Shanghai 200092, China Department of gerontology, Shanghai Jiaotong University affiliated sixth people’s hospital, Shanghai 200233, China c Department of Neurology, Shanghai Tenth People’s Hospital, Tongji University, 301 Yan Chang Zhong Road, Shanghai 200072, China d Department of Neurology, Huashan Hospital, Fudan University, 12 Wu Lu Mu Qi Zhong Road, Shanghai 200041, China b

A R T I C L E

I N F O

Article history: Received 9 February 2019 Received in revised form 15 August 2019 Accepted 15 August 2019 Available online xxx Keywords: Caregiver Dementia Health-related quality of life Self-efficacy Self-management

A B S T R A C T

This study was designed to examine the feasibility of a caregiving self-management support program developed for caregivers of relatives with dementia in Shanghai. A total of 41 caregivers were recruited for a quasi-experimental study. The experimental group of 26 participants attended six bi-weekly social support group sessions. The control group of 15 participants received three monthly telephone instructions. All of participants received an illustrated caregiver educational booklet and three educational presentations during a six-month follow-up period. The results demonstrated a stronger sense of self-efficacy regarding the gathering of information about dementia care in both study groups compared to the baseline data. Caregivers participating in the group sessions reported better health-related quality of life, improved responses to behavioral disturbances, and efficacy in the management of stress than those who received telephone instructions. This study provided some preliminary information regarding ways to improve self-management for the target population in mainland China. © 2019 Elsevier Inc. All rights reserved.

Introduction Caring for relatives with dementia (RWD) is often a long-term burdensome task for families. Providing caregivers with ongoing education and facilitating their caregiving self-management has been regarded as an indispensable strategy to support families of RWD.1,2 To date, different types of interventions that focused on psychosocial aspects, educational needs, case management, and support have been reported to effectively promote self-management for caregivers of RWD.1,3 5 A systematic meta-review1 on caregiving self-management interventions identified a significant alleviation of caregiving stress and distress. However, studies have been limited in scope with regard to other important outcomes of the dyads.1 For example, there is scant research1 on caregiver self-efficacy, quality of life, health status, and the care recipients’ behavioral and psychological symptoms of dementia (BPSD).6 Self-efficacy has been used extensively in studies on the selfmanagement of chronic conditions to measure an individual’s confidence in their ability to deal with disease-related problems.7 10

* Corresponding authors. E-mail addresses: [email protected], [email protected] (S.Y. Zhang), [email protected] (Q.H. Guo), [email protected] (Y.X. Zhao). https://doi.org/10.1016/j.gerinurse.2019.08.006 0197-4572/$ see front matter © 2019 Elsevier Inc. All rights reserved.

Self-efficacy has also been treated as an important indicator of an individual’s adaptation to long-term stress, such as stress related to caregiving.9 12 The authors’ previous observational studies12,13 also found that self-efficacy played an important role in the dyads’ wellbeing. For example, self-efficacy was a partial mediator between both caregivers’ mental health and care recipients’ BPSD.13 The studies covered in a review1 that included self-efficacy as an outcome measure examined psychosocial interventions and provided information about dementia care. However, evidence of the interventions’ impact on self-efficacy proved inconsistent across the studies.1 The meta-review1 also revealed that caregiver education (via psycho-educational interventions) and support group strategies (such as mutual support, educational psychology groups, and educational training groups) were two effective intervention strategies that alleviated caregiver burden. Another systematic review14 confirmed that support groups with the dyads or only the caregivers resulted in decreased caregiver burden. However, no support group interventions have evaluated the effects on the self-efficacy of caregivers of RWD.1,14 Research on the self-management of chronic health conditions identified support group intervention as a common strategy to support health behaviors through the improvement of self-efficacy.14,15 Interventions typically integrated the four sources identified by Bandura in his work on self-efficacy: mastery experiences,

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vicarious experiences (role models), verbal persuasion (encouragement from those who have proven influential in the life of the participant), and the optimization of mental and physiological states.16,17 Observational studies also identified that social support was an influential factor that shaped the self-efficacy of caregivers.10,12,13,18 Positive social interactions, such as those cultivated in support groups, could enhance caregiver self-efficacy associated with the collection of information, development of responses to BPSD, and management of caregiver stress.12 Previous work by the authors found that selfefficacy was also a partial mediator between caregivers’ healthrelated quality of life (HRQoL) and social support.13 After controlling for care recipients’ BPSD, family caregivers with greater levels of social support reported a stronger sense of self-efficacy with regard to the gathering of information.19 However, the evidence was insufficient regarding the effect of caregivers’ psycho-educational interventions on their quality of life.1 Thus, there is a need for further research on intervention strategies that could help identify the effect of caregiver self-efficacy and health-related outcomes of both caregivers and RWDs. An earlier qualitative study20 conducted by the authors in mainland China identified the main obstacles to caregiver self-management: a lack of reliable and accessible information about dementia care, frustrations related to communication with the care recipient, disturbances in daily routines, and unfamiliarity with and/or difficulty in balancing the caregivers’ own health needs. The needed support for these families has proven challenging for transitional countries. For example, there is a lack of community services (such as caregiver support groups) in mainland China to provide ongoing caregiver education. The main caregiver concerns that emerged from our previous research included access to individualized and reliable instruction, the desire to communicate negative sentiments related to caregiving, and the need for peer support.20 Therefore, a caregiving self-management support (C-SMS) program including a caregiver educational booklet was developed based on the qualitative data20 and relevant literature. The C-SMS program represented an educational and psycho-social support program for caregivers of RWD in Shanghai, China. The purpose of the current study was to examine the feasibility and preliminarily evaluate the effect of the C-SMS program for caregivers and their RWD in Shanghai. It was hypothesized that (1) implementation of the C-SMS program for caregivers of relatives with dementia in Shanghai would improve health-related quality of life and self-efficacy of caregivers’ RWD and (2) caregivers who received group session support in the C-SMS program would show an overall stronger sense of self-efficacy compared to those in the control group. The changes in caregivers’ metabolic syndrome and RWDs’ disability and BPSD as well as the attrition rate were also evaluated in this study. Methods Study design A quasi-experimental and equivalent control group study was designed. There were two practical considerations regarding support for the control group and participant allocation in this study. First, from the findings of our previous qualitative study,20 access to individualized and reliable instruction was one of the main reasons most of the caregivers desired to participate in the program. However, there was a lack of community services in Shanghai to provide ongoing education and individualized instruction to caregivers. To avoid a placebo control design, telephone instruction, a common strategy to provide individualized instruction for those with chronic conditions in communities, was selected for the supportive strategy for the control group. Second, one aim of this study was to evaluate the feasibility of the program. Some caregivers in the qualitative study also

expressed a desire for group support.20 In addition to providing individualized and reliable instruction, group support could also provide peer support compared to telephone instruction. Therefore, allowing the participants to choose their preferred method of participation was a practical consideration in this study with regards to the examination of their reasons for selections and the attrition rate. Ethical considerations Ethical approval to conduct the study was obtained from the Ethics Committees of the Faculty of Medicine and Life Science of Tongji University and the participating hospitals. Retrospective registration from the Chinese Clinical Trial Registry was completed on October 17, 2018 (trial number: ChiCTR1800018930). Participants and recruitment The participants’ inclusion criteria were family caregivers who (1) actively cared for relatives with diagnosed dementia according to the DSM-5 or criteria established by NINCDS-ADRDA for Alzheimer’s disease, (2) lived with the care recipients in communities in Shanghai, and (3) were involved in health care decisions and carried out most of the care for their RWD. Caregivers were excluded under any of the following conditions: (1) under 18 years of age, (2) simultaneously caring for another relative with a chronic medical condition, or (3) suffering from severe physical and/or mental disorders that made it impossible for them to undertake major caregiving tasks and complete the study. Recruitment for the quasi-experimental study began in September 2016. Two strategies for recruitment were pursued. The first was to recruit participants when they accompanied their RWD to see neurologists at the outpatient memory clinics of two tertiary hospitals (Shanghai Hua Shan Hospital and Shanghai Tenth People’s Hospital). The second was to recruit subjects when they participated in caregiver educational presentations by the neurological departments of the two hospitals as part of the events organized for World Alzheimer’s Month. Neurologists presented the eligible caregivers to the C-SMS program and the study. They also provided the potential participants an information sheet about the program and study. The caregivers who verbally agreed to participate in the study provided their contact details to postgraduate student volunteers from Tongji University School of Medicine. Their preferences for participating in group sessions or receiving telephone instructions were noted by the volunteers. The students then set up appointments for the first telephone call. The participant’s first telephone call was conducted by a researcher (MF) to arrange a time for their baseline physical examination and the subsequent first telephone assessment. The students also waited for the participants at the physical examination center and guided their baseline physical examinations. Written consent was obtained from the participants prior to the baseline physical examination. Protocol of the C-SMS program The process of protocol development was previously described in the authors’ qualitative study.20 The C-SMS program consisted of an illustrated caregiver educational booklet, six bi-weekly support group sessions, and three educational presentations during a sixmonth follow-up period.20 The caregiver educational booklet was also developed from the qualitative study.20 The booklet consisted of three volumes and a brochure that listed contact information and application procedures for public health and social services in each district in Shanghai. Volume One addressed basic knowledge of dementia care, major targets of caregiving self-management,21 and frequently asked questions aimed to support caregivers to share

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decision-making with doctors about their RWDs’ pharmacological intervention. The information in Volume Two aimed to support caregivers to recognize their RWDs’ symptom changes and to clarify common problems related to their caregiving. The main types of non-pharmacological interventions and the role of caregivers in nonpharmacological interventions were also addressed in this volume. Volume Three provided knowledge and skills for self-management of chronic conditions and available resources. This volume also emphasized the importance and advantages of balancing caregiving and the caregivers’ own health needs.20 After the posttest period of the quasi-experimental study, the research team finalized the content for Volumes One and Volumes Two. These two volumes covered the content presented in most of the C-SMS program. A registration certificate (沪作登字 2017-L-00892983) was obtained from the local copyright administration. The support group sessions were comprised of discussions on specific caregiving topics and peer support as well as individualized instruction and constructive feedback. To facilitate the participants’ self-management skills, the decision-making process summarized by Entwistle and Wattv22 was adapted and integrated into the sessions. We also developed slides for follow-up presentations and possible topics to be covered in the group sessions. The caregiver educational

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booklet provided the caregivers concise information about the principles of caregiving self-management in the field of dementia care, whereas the slides were used with the participants who wanted to understand the scientific evidence of these principles. Approximately five slides were prepared for each subtopic to guarantee a group dynamic, promote group discussion, and encourage peer support. Procedures of the quasi-experimental study From September 2016 to September 2017, a total of 41 eligible caregivers were recruited and participated in the quasi-experimental study conducted at Hubei Campus of Tongji University School of Medicine in Shanghai. A flow chart of the quasi-experimental study appears in Fig. 1. Twenty-six caregivers who preferred to participate in group sessions formed the experimental group. Fifteen participants were treated as a control group and received three sets of monthly telephone instructions and a telephone interview on the last week of the third month to collect their feedback on the last instruction. Two support groups (with 12 and 14 caregivers) were conducted in the meeting room of the School of Medicine. Each group session was conducted by two trained facilitators (SYZ, QHG, or YXZ) from the research team. Prior to the first group session, the group

Fig. 1. Procedure of the quasi-experimental study.

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Table 1 Activities, goals, and themes established by the participants of group sessions. Sessions

Activities

Goals for caregivers

Themes

1

Engagement

1 2

Recognition of caregivers’ own decision-making related to caregiving

To establish a sense of involvement among the participants. To clarify the most important health needs for the care recipient and/or caregiver.

1 2

Identification and appraisal of potential solutions

To be a smart caregiver through the collection of information about feasible coping strategies

3 5

Selection of a solution and evaluation of implementation procedure

To learn self-management skills regarding BPSD management and stress management

6

Summary and feedback for future activities

To clarify achievement and unfinished tasks regarding caregiver self-management

Introduction of caregiving experiences and care recipients’ illness trajectories Sharing stories regarding the effects of care recipients’ symptoms (changes) and medication treatments on health of the dyads, and discussion of the caregivers’ worries and unmet need(s) Discussion of the (possible) physical and psycho social outcomes of the dyads regarding caregivers’ coping strategies, as well as an introduction of services for which caregivers could apply or utilize Assessment of the levels of care recipients’ BPSD and caregiver burden, analysis of the effects of coping strategies and/or treatment on care recipients’ BPSD and caregivers’ subjective and objective burden, and provision of encouragement, constructive feedback and peer support Topics regarding caregiving self-management that caregivers want to learn through follow-up presentations and a discussion about the establishment of a caregiver-support club to continue support after the study

facilitators contacted the participants via telephone to advise them of the time and place for their session. A light meal and free return taxi trip were offered to the caregivers. The topics for each group or telephone session varied depending on the participants’ preferences. Table 1 lists the activities, goals, and themes of each group session established by the study participants. The telephone instruction topics were mainly related to instructions on medication and BPSD management, provision of psychological support, and consultation about service use. Each group session lasted from two and one-half to three hours, while the length of the individual telephone instruction varied from 20 min to one and one-half hours. The durations depended primarily on the care recipients’ condition. A member of the research team (DLT) conducted the telephone instruction sessions and an additional telephone interview on the last week of the third month. Two members of the research team (FW and MF) administered questionnaires during the telephone interviews with all of the participants at baseline as well as during the posttest and follow-up stages of the research (Fig. 1). The baseline and follow-up assessments were also comprised of a physical examination conducted in the physical examination center of a tertiary teaching hospital at Tongji University. The baseline or follow-up telephone assessment was arranged for any day between the first to third day of the participants’ physical examinations depending on their availability. Measures Socio-demographic data, such as age, gender, relationship to care recipient (for example, spouse or adult child), educational level, and employment, were collected from the caregivers at the beginning of the study. Chronic diseases suffered by the caregivers and the RWDs’ type and stages of dementia were also obtained from their medical records at the beginning of the study. Caregivers The caregivers’ health-related quality of life (HRQoL) and caregiving self-efficacy were measured as the primary outcomes. The HRQoL indexes consisted of a physical component score (PCS) and a mental component score (MCS) obtained from the Chinese version of the 36Item Short-Form Health Survey (SF-36).23 The Chinese version of the SF-36 has been applied in diverse populations including RWD caregivers in China and has demonstrated acceptable psychometric properties.13,23 Caregiving self-efficacy was measured using the Chinese

version of the 27-item Self-Efficacy Questionnaire for Chinese Family Caregivers (SEQCFC).19,24 The SEQCEC is comprised of five caregiving domains: gathering information about treatment, symptoms, and health care (GI, 4 items); obtaining support (OS, 6 items); responding to behavioral disturbances (RBP, 7 items); managing household, personal, and medical care (MHPMC, 4 items); and managing distress associated with caregiving (MDC, 6 items).19,24 The total scale and subscale scores rated the level of caregiver confidence in percentages from 0% (“cannot do at all”) to 100% (“certainly can do”), with higher scores indicating a stronger sense of self-efficacy.19 The psychometric properties of the SEQCFC were validated.11 13,19 All Cronbach’s a were over 0.80, the 4-week test-retest reliabilities ranged from 0.64 to 0.85, and the convergent validity was satisfactory. The number of cases of metabolic syndrome among the caregivers was the secondary outcome collected from the caregivers’ medical records of the physical examinations at the baseline and follow-up. Based on the guidelines suggested by the Chinese Diabetes Society,25,26 metabolic syndrome was defined as having any three of the following: (1) body mass index (BMI)
25 kg/m2 25; (2) fasting plasma glucose
6.1 mmol/L or two-hour post-load plasma glucose
7.8 mmol/L and/or medication25,26; (3) blood pressure
130/85 mmHg and/or medication26; (4) triglyceride (TG)
1.70 mmol/L25,26; and (5) high-density lipoprotein cholesterol (HDL-C) < 1.04 mmol/L.26 All of the participants’ anthropometric assessments, blood pressure levels, and blood draws were performed by registered nurses at the physical examination center. BMI was calculated using an ultrasonic measuring station for height and weight (Seca, Hamburg, Germany). Blood pressure was measured on the right upper arm using an Omron HBP-9020 automatic blood pressure monitor (Omron Healthcare, Kyoto, Japan). After resting for at least 5 min, the participants were fitted with an appropriate cuff size and their blood pressure was assessed in a seated position. Blood samples were collected from the antecubital vein from 08:00 to 9:00 a.m. after an overnight fast. Their blood concentrations of fasting glucose, TG, and HDL-C were determined using standard equipment and assays in the hospital’s central laboratory. All of the biochemical analyses were conducted using a Beckman AU5800 Clinical Chemistry Analyzer (Beckman Coulter, Brea, CA, USA). Care recipients The secondary outcomes also included activities of daily living (ADL) and BPSD of the care recipients. The data were reported by the

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caregivers using the Chinese version of the Disability Assessment in Dementia (DAD)27 and the Neuropsychiatric Inventory-Questionnaire (NPI-Q),28 respectively. The Chinese version of the DAD27 measures RWDs’ instrumental activities of daily living (IADL, 25 items) and ADL (22 items) within the past two weeks. The total scale and subscale scores of the DAD were rated as a percentage ranging from 0% to 100%. Higher scores indicated better physical functioning. The reliability of the DAD was satisfactory, including Cronbach’s a for the total score (0.91), the test-retest reliability (0.99), and the interrater reliability (0.98).27 A significant and negative correlation was found between the total DAD scores and global deterioration among those with dementia (Spearman’s rho = 0.89, p < .001).27 The Chinese version of the NPI-Q28 is a 12-item questionnaire extensively used in China to evaluate the severity of neuropsychiatric symptoms (including delusions, hallucinations, agitation, apathy, anxiety, depression, euphoria, irritability, disinhibition, aberrant motor behavior, changes in appetite, and nighttime behavior disturbances) among those with dementia in the past month. Each item was rated from 0 (“the symptom(s) has not been present”) to 3 (“severe”). Higher scores indicated more and more severe BPSD. The psychometric properties of the Chinese version of the NPI-Q were satisfactory: Cronbach’s alpha coefficient was 0.851 and the Guttman split-half reliability was 0.825.28 Data analysis The preliminary data analysis included a summary of the demographic data and calculations of the means and standard deviations (SD) or medians for the variables related to HRQoL (SF-PCS and SFMCS), self-efficacy (SEQCFC), and RWDs’ impairments. Normal distribution and homogeneity of variance were also examined during the preliminary data analysis. A full analysis set (FAS) was used to evaluate the effect of the quasi-experimental study. The Kruskal Wallis test was utilized to determine the dementia stages and identify differences between the groups at baseline. The chi-squared test or Fisher’s test was conducted for other categorical variables. Independent t-tests were used for the variables with normal distribution and the Mann Whitney U test for the variables with non-normal distribution. Steps to test the hypotheses included: (1) a mixed betweenwithin ANOVA was conducted to detect differences between the groups at each stage of the study and (2) possible differences within each group were also examined using repeated measures ANOVA with post-hoc tests for the variables with normal distribution and Friedman tests and Wilcoxon signed-rank tests (using a Bonferroni adjusted alpha value) for the variables with non-normal distribution. A p-value of less than .05 was considered statistically significant, except for the Wilcoxon signed-rank tests for which a p-value of less than .017 was considered statistically significant.29 A partial eta squared value (hp2) was the effect size (with a large effect of .14, medium effect of .06, and small effect of .01) for mixed between and within-subjects ANOVA or one-way repeated measures ANOVA.29 The effect size for the Mann Whitney U test or Wilcoxon signedrank test was an approximate value (r) calculated using the following formula (large effect of r = 0.50, medium effect of r = 0.30, and small effect of r = 0.10).29 r = z/square root of N (N was the number of cases for the Mann Whitney U test or the number of observations over two time points for the Wilcoxon signed-rank test). Results Description of the sample and dyad measures Of the 41 participants, 37 (90.2%) completed the intervention stage (group sessions or telephone instructions) and posttest

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assessment. A total of 33 (80.5%) participants completed the study (Fig. 1). Four participants withdrew from the group sessions before the posttest. Their reasons for withdrawal included hospital admissions because of fracture and/or surgery (two RWDs and one caregiver) and overseas travel (one dyad). Four participants in the control group withdrew during the follow-up stage or did not complete the follow-up assessment due to work and household demands (two caregivers), hospitalization (one RWD), or death (one RWD). Table 2 lists the demographic characteristics and baseline assessment of the dyads. Of the caregivers with secondary education levels (22, 53.7%), seven (17.1%) had completed middle school and 15 (36.6%) had finished high school. Of the 41 care recipients, three (7.3%) had completed primary school, nine (22.0%) had finished middle school, and nine (22.0%) had graduated high school. The caregiver medical records showed that 33 (80.5%) suffered from chronic health conditions at the time of the baseline assessment. Most of the caregivers with chronic health conditions were spouses (85%, n = 28) and the rest were adult children (15%, n = 5). The most common chronic conditions were hypertension (48.8%), arteriosclerosis (48.8%), and hepatic adipose infiltration (22.0%). There were no significant differences with regard to the demographic data and other variables between the two groups at baseline, with the exception of the number of caregivers’ with metabolic syndrome (see Table 2); there were more cases of metabolic syndrome among the caregivers in the experimental group (17.1%) than in the control group (0, 0.0%). Primary and secondary outcomes Tables 2 and 3 list the means, standard deviations, or medians, as well as the results of the mixed design ANOVA for HRQoL and caregiving self-efficacy among the caregivers and the ADL and BPSD of the care recipients. The results of the post-hoc analyses appear in Table 4. Primary outcomes A significant interaction between the time from pre- to followup and group condition was found in the responses to BPSD selfefficacy and stress management self-efficacy (RPD: p = .013; MDC: p = .034), with large effect sizes (hp2: all > 0.14). There were also significant main effects (effect for time) to HRQoL (PCS: p = .001; MCS: p = .045) and the three domains (gathering information, responses to BPSD, and stress management) of caregiver self-efficacy (GI: p < .001; RPD: p = .013; MDC: p = .047), with large effect sizes. Additionally, a statistically significant between-subjects effect (effect for group) was found for gathering information selfefficacy (p = .043, hp2 = 0.13), with a moderate size of the effect. The linear plots for the time effects of the aforementioned variables are listed in Fig. 2. Post-hoc analyses (Table 4) demonstrated that the caregivers in the experimental group reported a significant improvement in posttest HRQoL (PCS: p = .007; MCS: p = .017) and the three caregiving self-efficacy variables (GI: p = .001, r = 0.50; RPD: p = .038; MDC: p = .025), especially in comparison to their baseline assessments. Moreover, improvements in the three caregiving self-efficacy variables were maintained until the follow-up assessment [(T0 T2): GI, p < .001, r = 0.52; RPD, p = .001; MDC, p = .019; (T1 T2): GI, p = .646, r = 0.07; RPD, p = .138; MDC, p = 1.000]. However, improvements in the HRQoL variables at posttest were not maintained until the time of the follow-up assessment. The levels of gathering information selfefficacy in the control group showed similar changes [(T0 T2): p = .003, r = 0.58; (T1 T2): p = .553, r = 0.11] to those in the experimental group, but no significant difference was found in the other primary outcomes for the control group.

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Table 2 Description of demographic data and outcome measures at baseline. Categories

Caregivers Demographics Age (y) Gender Female Male Educational level Secondary education and lower Tertiary education or higher Employment status Not retired Retired Relationship with caregiver Spouse Adult child Health-related quality of life Physical health Mental health Caregiving Self-efficacy Gathering information Obtaining support Responding to BPSD Managing routine care Managing distress Metabolic syndrome Yes No Care recipients Demographics Age (y) Gender Female Male Educational level Secondary education and lower Tertiary education or higher Employment status Not retired Retired Subtype of dementia Alzheimer's disease Other subtypes Stage of dementia Mild Moderate Severe Disability BPSD

Mean (SD), Median (IQR) or N (%) Overall (n = 41)

Experimental group (n = 26)

66.76 (8.26)

67.31 (8.27)

Control group (n = 15)

Group differences [t, U, X2, or a p (Fisher’s test)]

28 (68.3%) 13 (31.7%)

17 (65.4%) 9 (34.6%)

65.80 (8.43) p = .734 11 (73.3%) 4 (26.7%)

t (39) = 0.56

22 (53.7%) 19 (46.3%)

12 (46.2%) 14 (53.8%)

10 (66.7%) 5 (33.3%)

6 (14.6%) 35 (85.4%)

4 (15.4%) 22 (84.6%)

2 (13.3%) 13 (86.7%)

34 (82.9%) 7 (17.1%)

22 (84.6%) 4 (15.4%)

12 (80.0%) 3 (20.0%)

45.34 (12.00) 45.49 (10.04)

46.38 (11.69) 44.46 (10.48)

43.55 (12.72) 47.28 (9.30)

t (39) = 0.72 t (39) = 0.86

37.50 (22.50, 48.75) 63.61 (21.59) (n = 38) 55.50 (19.85) (n = 38) 79.47 (19.60) 60.53 (17.23) (n = 39)

38.75 (22.50, 52.50) 62.17 (17.41) (n = 24) 53.89 (18.23) (n = 24) 77.98 (18.58) 58.37 (17.11) (n = 25)

25.00 (17.50, 42.50) 66.06 (27.94) (n = 14) 58.27 (22.81) (n = 14) 82.06 (21.67) 64.40 (17.39) (n = 14)

U = 147, z = 1.30

7 (17.1%) 34 (82.9%)

7 (26.9%) 19 (73.1%)

0 (0.0%) 15 (100.0%)

73.41 (9.32)

72.92 (10.38)

74.27 (7.37)

17 (41.5%) 24 (58.5%)

11 (42.3%) 15 (57.7%)

21 (51.2%) 20 (48.8%)

13 (50.0%) 13 (50.0%)

6 (40.0%) 9 (60.0%) X2 (1, n = 41) = 0.00 8 (53.3%) 7 (46.7%)

3 (7.3%) 38 (92.7%)

2 (7.7%) 24 (92.3%)

35 (85.4%) 6 (14.6%)

24 (92.3%) 2 (7.7%)

1 (6.7%) 14 (93.3%) a p = .168 11 (73.3%) 4 (26.7%)

21 (51.2%) 11 (26.8%) 9 (22.0%) 53.19 (19.36, 87.23) 10.00 (6.50, 15.00)

11 (42.3%) 8 (30.8%) 7 (26.9%) 43.02 (6.38, 86.58) 10.50 (5.50, 15.00)

10 (66.7%) 3 (20.0%) 2 (13.3%) 82.61 (23.40, 91.49) 10.00 (8.00, 19.00)

a

X2 (1, n = 41) = 0.89

a

p = 1.000

a

p = .693

t (36) = 0.47 t (36) = 0.65 t (39) = 0.64 t (37) = 1.05 a

p = .035*

t (39) = 0.44 X2 (1, n = 41) = 0.00

a

p = 1.000

b 2

X (1, n = 41) = 2.19

U = 244, z = 1.33 U = 214, z = 0.50

Abbreviations: IQR, interquartile range; BPSD, the behavioral and psychological symptoms of dementia. a p value of the Fisher’s Exact Probability Test. b Kruskal Wallis Test. * p  .05.

Secondary outcomes The three cases of metabolic syndrome in the experimental group disappeared during the follow-up examination. However, a total of seven new cases were identified during the follow-up examination (five in the experimental group and two in the control group). No difference in the number of metabolic syndrome cases between the two groups was detected during the follow-up assessment using Fisher’s exact test (p = .258).

There was a significant main effect of treatment on the care recipients’ BPSD (NPI-Q: p = .031) and a borderline main effect on ADL (DAD: p = .059), with large effect sizes; see also Fig. 2. Further posthoc analyses (Table 4) showed that the levels of the care recipients’ ADL in each study group were worse at follow-up compared to those at baseline and posttest [(T0 T2): experimental group, p = .002, r = 0.45; control group, p = .003, r = 0.57; (T1 T2): experimental group, p = .002, r = 0.46; control group, p = .012, r = 0.49]. The effects

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Table 3 Effect of intervention on outcomes of caregivers and care recipients over time. Variables

Caregiver measures Health-related quality of life Physical health Baseline Posttest Follow-up Mental health Baseline Posttest Follow-up Caregiving Self-efficacy Gathering information Baseline Posttest Follow-up Obtaining support Baseline Posttest Follow-up Responding to BPSD Baseline Posttest Follow-up Managing routine care Baseline Posttest Follow-up Managing distress Baseline Posttest Follow-up Impairments of care recipients Disability Baseline Posttest Follow-up BPSD Baseline Posttest Follow-up

Experimental group

Control group

(n = 22) 44.39 (11.61) 53.09 (9.77) 44.22 (12.42) (n = 22) 42.86 (10.09) 49.26 (8.32) 48.61 (9.06)

(n = 11) 44.57 (12.07) 49.16 (15.78) 42.67 (14.81) (n = 11) 46.58 (10.32) 47.72 (11.02) 44.62 (12.84)

(n = 22) 33.45 (20.00) 57.84 (15.76) 58.41 (12.11) (n = 20) 61.53 (17.74) 61.92 (11.02) 65.10 (16.57) (n = 17) 52.77 (20.30) 69.34 (12.53) 76.68 (11.32) (n = 22) 78.75 (19.66) 83.83 (7.69) 81.29 (22.12) (n = 21) 58.21 (18.07) 66.92 (14.18) 68.17 (20.80)

(n = 11) 24.77 (12.96) 50.91 (9.17) 49.75 (11.48) (n = 10) 71.75 (28.52) 66.33 (15.15) 70.50 (19.05) (n = 11) 62.54 (21.64) 60.17 (9.67) 61.60 (13.57) (n = 11) 81.89 (23.10) 84.32 (8.88) 79.17 (15.00) (n = 11) 64.09 (18.64) 69.85 (10.97) 59.55 (17.48)

(n = 22) 40.75 (36.69) 41.52 (38.39) 32.28 (38.20) (n = 22) 12.36 (8.75) 9.14 (5.70) 10.23 (7.09)

(n = 11) 59.14 (34.14) 54.35 (38.67) 48.87 (41.78) (n = 11) 13.27 (6.10) 10.36 (6.00) 13.09 (7.60)

Effect

Numerator df, Denominator df

Wilk’s λ

a

Effect size (hp2)

Group Time Group£Time

1, 31 2, 30 2, 30

一 0.63 0.98

F (1, 31) = 0.27 F (2, 30) = 8.74** F (2, 30) = 0.36

0.01 0.37 0.02

Group Time Group£Time

1, 31 2, 30 2, 30

一 0.81 0.88

F (1, 31) = 0.04 F (2, 30) = 3.44* F (2, 30) = 2.11

0.00 0.19 0.12

Group Time Group£Time

1, 31 2, 30 2, 30

一 0.39 1.00

F (1, 31) = 4.45* F (2, 30) = 23.26** F (2, 30) = 0.07

0.13 0.61 0.01

Group Time Group£Time

1, 28 2, 27 2, 27

一 0.89 0.98

F (1, 28) = 1.40 F (2, 27) = 1.65 F (2, 27) = 0.31

0.05 0.11 0.02

Group Time Group£Time

1, 26 2, 25 2, 25

一 0.71 0.71

F (1, 26) = 1.42 F (2, 25) = 5.16* F (2, 25) = 5.21*

0.05 0.29 0.29

Group Time Group£Time

1, 31 2, 30 2, 30

一 0.95 0.99

F (1, 31) = 0.01 F (2, 30) = 0.72 F (2, 30) = 0.19

0.00 0.05 0.01

Group Time Group£Time

1, 30 2, 29 2, 29

一 0.81 0.79

F (1, 30) = 0.00 F (2, 29) = 3.40* F (2, 29) = 3.81*

0.00 0.19 0.21

Group Time Group£Time

1, 31 2, 30 2, 30

一 0.83 0.98

F (1, 31) = 1.51 F (2, 30) = 3.12 F (2,30) = 0.36

0.05 0.17 0.02

Group Time Group£Time

1, 31 2, 30 2, 30

一 0.79 0.95

F (1,31) = 0.51 F (2,30) = 3.92* F (2,30) = 0.80

0.02 0.21 0.05

F

Abbreviations: BPSD, the behavioral and psychological symptoms of dementia. a Mixed between within subjects analysis of variance. * p  0.05. ** p  0.001.

were medium in size (between 0.3 and 0.5). However, there were no significant changes in the BPSD levels. Discussion This study examined the effectiveness of a caregiving self-management support program to improve HRQoL and enhance self-efficacy among caregivers of RWD in Shanghai. The caregivers who participated in the group sessions reported better HRQoL at posttest compared to those receiving telephone instructions. Based on Bandura’s self-efficacy theory,30 this study also examined the effectiveness of group sessions as a means to facilitate caregivers’ self-efficacy. The results from the posttest identified greater confidence in managing BPSD and stress related to caregiving among caregivers who participated in the group sessions compared to those who received individual telephone instructions. Our study also found that caregivers in both groups reported greater confidence in their ability to gather information about dementia care at posttest and follow-up in comparison to their baseline assessments. Therefore, the hypotheses concerning the effects of the C-SMS program on caregivers’ HRQoL and self-efficacy were supported. The aforementioned findings from our preliminary exploration were also consistent

with the relevant literature,31 which summarized that effective psychosocial educational programs should comprise interactions between caregivers and health professionals in the provision of information support and constructive feedback to their mastery. This study also examined the effect on the health states of the dyads, such as RWDs’ BPSD. While the caregivers reported significant changes between time from pre- to follow-up in the levels of their RWDs’ BPSD and their self-efficacy for responding to BPSD, no statistically significant difference in the levels of BPSD was observed between the two groups or in each group over the three time points. The types (such as dementia with Lewy bodies) and severity of dementia were associated with the occurrence, type, frequency, and severity of BPSD apart from the RWDs’ presumed etiology.32 From the baseline data, the level of the RWDs’ BPSD was not high and over 50% of the care recipients were at mild stage of dementia; among all of the care recipients, only two suffered from dementia with Lewy bodies and one was in the severe stage of dementia with a high BPSD score. This was the possible reason related to the lack of variance in the BPSD measure, and the results implied that the recruitment criteria for the RWDs’ number and level of BPSD would be considered in future caregiver self-management interventions to target a reduction

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Table 4 Summary of the effect of intervention on outcome variables in each group over time with post-hoc analyses. Variables

a

Group

Caregiver measures Health-related quality of life Physical health E C Mental health E C Caregiving Self-efficacy Gathering information E C Obtaining support

E C Responding to BPSD E C Managing routine care E C Managing distress E C Impairments of care recipients Disability E C BPSD

E C

Mean differences (Std Err) or bz

Mean (SD) or Median (IQR) T0

T1

T2

44.39 (11.61) 44.57 (12.07) 42.86 (10.09) 46.58 (10.32)

53.09 (9.77) 49.16 (15.78) 49.26 (8.32) 47.72 (11.02)

44.22 (12.42) 42.67 (14.81) 48.61 (9.06) 44.62 (12.84)

37.50 (22.50, 50.63) 22.50 (17.50, 37.50) 61.53 (17.74) 71.75 (28.52) 52.77 (20.30) 62.54 (21.64) 78.75 (19.66) 81.89 (23.10) 58.21 (18.07) 64.09 (18.64)

57.50 (46.88,67.50) 50.00 (47.50, 57.50) 61.92 (11.02) 66.33 (15.15) 69.34 (12.53) 60.17 (9.67) 83.83 (7.69) 84.32 (8.88) 66.92 (14.18) 69.85 (10.97)

56.25 (50.00, 68.13) 49.75 (40.00, 57.50) 65.10 (16.57) 70.50 (19.05) 76.68 (11.32) 61.60 (13.57) 81.29 (22.12) 79.17 (15.00) 68.17 (20.80) 59.55 (17.48)

28.78 (5.32, 82.17) 64.29 (23.40, 91.49) 11.50 (5.50, 15.75) 11.00 (10.00, 19.00)

30.33 (6.93, 86.32) 36.59 (21.28, 97.73) 7.00 (4.00, 13.25) 10.00 (4.00, 16.00)

13.19 (0.00, 70.43) 27.66 (10.64, 93.18) 9.00 (5.00, 13.00) 14.00 (5.00, 19.00)

Group by time effect

Effect sizee

(T0 T2)

(T1 T2)

c

0.17 (2.84) 1.90 (6.62) 5.75 (2.37) 1.96 (2.16)

8.87 (1.90)*** 6.49 (3.98) 0.65 (1.51) 3.10 (1.39)

F (2, 20) = 13.82*** F (2, 9) = 1.25 F (2, 20) = 4.55* F (2, 9) = 2.34

0.58 0.22 0.31 0.34

z = 3.44***

z = 3.60***

z = 0.46

X2 (2, n = 22) = 20.73***

一

z = 2.59**

z = 2.94**

z = 0.59

X2 (2, n = 11) = 18.20***

一

0.39 (3.65) 5.42 (7.47) 16.58 (5.90)* 2.37 (6.87) 5.08 (3.86) 2.42 (6.73) 8.71 (2.98)* 5.76 (5.01)

3.58 (4.57) 1.25 (6.47) 23.92 (5.50)*** 0.94 (4.79) 2.54 (5.65) 2.73 (3.21) 9.96 (3.25)* 4.55 (4.08)

3.18 (2.09) 4.17 (4.03) 7.34 (3.39) 1.43 (3.92) 2.54 (4.96) 5.15 (4.67) 1.25 (3.37) 10.30 (4.40)

F (2, 18) = 1.12 F (2, 8) = 0.50 F (2, 15) = 9.77** F (2, 9) = 0.07 F (2, 20) = 0.85 F (2, 9) = 1.55 F (2, 19) = 6.00** F (2, 9) = 2.55

0.11 0.11 0.57 0.01 0.08 0.26 0.39 0.36

z = 0.34

z = 3.15**

z = 3.05**

X2 (2, n = 22) = 6.59*

一

z = 1.36

z = 2.93

**

X2 (2, n = 11) = 5.13

一

z = 2.06

z = 1.32

z = 1.60

X2 (2, n = 22) = 2.30

一

z = 0.88

z = 0.31

z = 1.13

X2 (2, n = 11) = 3.95

一

(T0 T1)

8.71 (2.49)** 4.58 (6.37) 6.40 (2.07)* 1.15 (1.80)

z = 2.52

f

F or dX2

Abbreviations: IQR, interquartile range; BPSD, the Behavioral and Psychological Symptoms of Dementia. a Group: E (Experimental group), n = 22; C (Control group), n = 11. b Wilcoxon Signed Rank Test. c One-way repeated measures analysis of variance. d Friedman test. e Partial eta squared. f p  .017 (Wilcoxon Signed Rank Test). * p  .05. ** p  .01. *** p  0.001.

in RWDs’ BPSD. Research also found a significant role of caregivers in the frequency and severity of BPSD.32 Caregivers tended to report more BPSD if they experienced more depressive symptoms and/or stress, or RWDs’ BPSD could be triggered or exacerbated if their caregivers lacked coping skills and/or used negative communication styles.32 Although we did not measure the caregivers’ depressive symptoms in this study, we found improvements in the caregivers’ HRQoL and self-efficacy for responding to BPSD and managing caregiving stress, particularly among the group session participants. Meanwhile, compared to the significantly worse ADL in the RWD for each group from baseline to follow-up, their levels of BPSD did not show significant changes simultaneously. These findings indicated the possible effectiveness of their caregivers’ BPSD management. Further qualitative studies are needed to elicit the effects of caregiver management on the consequences of their RWDs’ BPSD A significant degeneration in the care recipients’ ADL also indicated a possible aggravation of caregiver burden. From literature including our previous qualitative study,20 lifestyle changes (such as social isolation, increase in caregiving intensity, and sleep disorders) and an unfamiliarity with and/or difficulty in balancing the caregiver’s own health needs were common among caregivers. A total of 33 participants in our study reported at least one chronic condition. Studies33 35 have documented how the emotional toll and lifestyle changes provoked by caregiving tasks, coupled with inadequate sources of support, result in a greater risk of chronic health conditions. Metabolic syndrome has been treated as an indicator for the association between lifestyle changes and chronic diseases.36,37 Therefore,

this study also examined cases of metabolic syndrome among the caregivers. Although seven new cases were identified during the follow-up examination, three cases that existed had disappeared at the time of follow-up. These findings indicated the complexities of the caregiving experience as well as its impact on the caregivers. They also suggested the need for further studies, including a more detailed assessment of the caregiving experience through cohort studies and self-management interventions to target balancing the caregivers’ own health needs. Although many psycho social interventions for the target population reported attrition rates, studies were quite limited on experiences of successful recruitment and retention strategies.38 40 The authors previously conducted a qualitative study to elicit supportive strategies used for the C-SMS program for the target population including individualized and/or group support strategies.20 To examine the feasibility of these support strategies, our study also allowed the participants to select their preference for group session support or telephone. We found that the overall attrition rate (19.5%) and the attrition rate of group session support for the intervention group (15.4%) were acceptable compared to the support group interventions evaluated with acceptable attrition rates (< 20%).14 We also used the follow-up presentation as a part of the protocol to further facilitate the caregivers’ selfmanagement, but we found that 4 of the 15 participants receiving telephone instructions dropped out during the follow-up stage and/or assessment, leading to a relatively high (26.7%) attrition rate in the control group. Some of the participants who elected to participate in the control group indicated that they chose telephone sessions because of

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Fig. 2. (a) (g). The linear plot of the time effects for variables across two groups. Note: T0 = baseline assessment, T1 = post-test assessment, T2 = follow-up assessment; Experimental group, red continuous line; Control group, blue dotted line. (For interpretation of the references to colour in this figure legend, the reader is referred to the web version of this article.)

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time constraints they faced due to their jobs, inability to travel long distances to participate in group sessions, heavy caregiver burden, or a preference for privacy in discussions about their RWD’s condition. The attrition rate of the control group and the reasons for their choices revealed the importance of offering the target population channels of support that matched their educational and emotional needs while simultaneously considering the other demands they faced. There are limitations to this study that merit mention. The sample size was small and selection bias related to the non-random allocation possibly occurred. Future studies would benefit from a larger sample size, a randomized controlled design, and a control of covariables influencing the outcomes. While the preliminary evaluation of the feasibility of the C-SMS program is encouraging, this study was conducted in a university campus. To improve caregivers’ confidence in managing caregiving challenges and guarantee support tailored to the dyads’ comprehensive needs, further studies are needed to investigate and examine the availability of the C-SMS program for the target population living in communities. Conclusion Family caregivers play a crucial role in the lives of those with dementia. This study provided preliminary data on the self-management of caregivers of RWD in mainland China. The research shed light on intervention strategies to promote caregivers’ self-management and strategies that could be deployed for future studies on caregivers.

5.

6. 7.

8.

9.

10.

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14.

Declaration of Competing Interest 15.

The authors declare that they have no competing interests. Acknowledgements The authors appreciate the support they received from the staff at Tongji University, the Shanghai Huashan Hospital and Shanghai Tenth People’s Hospital. We also thank all of the participants in this study and the student volunteers from Tongji University. All authors deeply appreciate valuable comments and support from peer reviewers, Dr. Barbara Resnick and Managing editor Ardis O'Meara. Funding This work was supported by the National Natural Science Foundation of China (grant number: 81571364), Foundation of Shanghai Municipal Commission of Health and Family Planning (grant number: 201540041) and the International Exchange Program for Graduate Students, Tongji University (grant number: 201801152).

16.

17. 18. 19.

20.

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Supplementary materials Supplementary material associated with this article can be found in the online version at doi:10.1016/j.gerinurse.2019.08.006.

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26.

References 27. 1. Huis In Het Veld JG, Verkaik R, Mistiaen P, Van Meijel B, Francke AL. The effectiveness of interventions in supporting self-management of informal caregivers of people with dementia; a systematic meta review health services research. BMC Geriatr. 2015;15:147. https://doi.org/10.1186/s12877-015-0145-6. € K. Self-management of caregivers. 2. Yang YJ, Saarenheimo M, Eloniemi-Sulkava U, Pitk€ala In: B€ ahrer-Kohler S, ed. Self Management of Chronic Disease : Alzheimer’s Disease. Berlin, Heidelberg: Springer; 2009:125–139. https://doi.org/10.1007/978-3-642-00326-4_10. 3. Parker D, Mills S, Abbey J. Effectiveness of interventions that assist caregivers to support people with dementia living in the community: a systematic review. Int J Evid Based Healthc. 2008;6(2):137–172. https://doi.org/10.1111/j.1479-6988.2008.00090.x. 4. Jensen M, Agbata IN, Canavan M, McCarthy G. Effectiveness of educational interventions for informal caregivers of individuals with dementia residing in the

28.

29. 30. 31.

community: systematic review and meta-analysis of randomised controlled trials. Int J Geriatr Psychiatry. 2015;30(2):130–143. https://doi.org/10.1002/gps.4208. Leung P, Orrell M, Orgeta V. Social support group interventions in people with dementia and mild cognitive impairment: a systematic review of the literature. Int J Geriatr Psychiatry. 2015;30(1):1–9. https://doi.org/10.1002/gps.4166. Finkel S, Burns A. BPSD Consensus Statement, International Psychogeriatric Association. United Kingdom: Cambridge University Press; 1999. Fu D, Fu H, Patrick M, et al. Implementation and quantitative evaluation of chronic disease self-management programme in Shanghai, China: randomized controlled trial. Bull World Health Organ. 2003;81(3):174–182. https://doi.org/10.1590/ S0042-96862003000300007. Lorig KR, Sobel DS, Stewart AL, et al. Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization a randomized trial. Med Care. 1999;37(1):5–14. https://doi.org/10.1097/ 00005650-199901000-00003. Tang WK, Chan CYJ. Effects of psychosocial interventions on self-efficacy of dementia caregivers: a literature review. Int J Geriatr Psychiatry. 2016;31(5):475–493. https://doi.org/10.1002/gps.4352. Grady PA, Gough LL. Self-management: a comprehensive approach to management of chronic conditions. Am J Public Health. 2014;104(8):e25–e31. https://doi. org/10.2105/AJPH.2014.302041. Zhang SY, Guo Q, Edwards H, Yates P, Li C. Self-efficacy moderation and mediation roles on BPSD and social support influences on subjective caregiver burden in Chinese spouse caregivers of dementia patients. Int Psychogeriatr. 2014:1–9. https:// doi.org/10.1017/S1041610214000994. Zhang SY, Edwards H, Yates P, Guo Q, Li C. Partial mediation role of self-efficacy between positive social interaction and mental health in family caregivers for dementia patients in Shanghai. PLoS ONE. 2013;8(12):e83326. https://doi.org/ 10.1371/journal.pone.0083326. Zhang SY, Edwards H, Yates P, Li C, Guo Q. Self-efficacy partially mediates between social support and health-related quality of life in family caregivers for dementia patients in Shanghai. Dement Geriatr Cogn Disord. 2014;37(1 2):34–44. https:// doi.org/10.1159/000351865. Dam AEH, De Vugt ME, Klinkenberg IPM, Verhey FRJ, Van Boxtel MPJ. A systematic review of social support interventions for caregivers of people with dementia: are they doing what they promise? Maturitas. 2016;85:117–130. https://doi.org/ 10.1016/j.maturitas.2015.12.008. Sheeran P, Maki A, Montanaro E, et al. The impact of changing attitudes, norms, and self-efficacy on health-related intentions and behavior: a meta-analysis. Heal Psychol. 2016;35(11):1178–1188. https://doi.org/10.1037/hea0000387. Jones F, Riazi A. Self-efficacy and self-management after stroke: a systematic review. Disabil Rehabil. 2011;33(10):797–810. https://doi.org/10.3109/ 09638288.2010.511415. Bandura A. Sources of Self-Efficacy. In: Self-Efficacy: The Exercise of Control. New York: W. H. Freeman and Company; 1997:79–113. Grover A, Joshi A. An overview of chronic disease models: a systematic literature review. Glob J Health Sci. 2014;7(2):210–227. https://doi.org/10.5539/gjhs.v7n2p210. Zhang SY, Edwards H, Yates P, Ruth E, Guo Q. Preliminary reliability and validity testing of a self-efficacy questionnaire for Chinese family caregivers. Aging Ment Heal. 2013;17(5):630–637. https://doi.org/10.1080/13607863.2013.771615. Rong XS, Wu F, Tang D, et al. Development of a self-management support program for caregivers of relatives with dementia in Shanghai. Geriatr Nurs. 2019. https:// doi.org/10.1016/j.gerinurse.2019.07.009. S0197-4572(19)30071-0. Martin F, Turner A, Wallace LM, Bradbury N. Conceptualisation of self-management intervention for people with early stage dementia. Eur J Ageing. 2013;10 (2):75–87. https://doi.org/10.1007/s10433-012-0253-5. Entwistle VA, Watt IS. Patient involvement in treatment decision-making: the case for a broader conceptual framework. Patient Educ Couns. 2006;63(3):268–278. https://doi.org/10.1016/j.pec.2006.05.002. Li L, Wang HM, Shen Y. Chinese SF-36 health survey: translation, cultural adaptation, validation, and normalisation. J Epidemiol Community Health. 2003;57 (4):259–263. https://doi.org/10.1136/jech.57.4.259. Zhang SY, Edwards H, Yates P, Ruth E, Guo QH. Development of self-efficacy questionnaire for chinese family caregivers. Int J Ment Health Nurs. 2012;21(4):358– 365. https://doi.org/10.1111/j.1447-0349.2011.00791.x. Metabolic Syndrome Research Collaboration Group of Chinese Diabetes Society. Recommendations of Chinese diabetes society on metabolic syndrome. Chin J Diabetes Mellitus. 2004;12(3):156–161. https://doi.org/10.3321/j.issn:1006-6187.2004.03.002. Chinese Diabetes Society. Chinese guideline for the prevention and treatment of type 2 diabetes mellitus (2013 edition). Chin J Diabetes Mellitus. 2014;6(7):447– 498. https://doi.org/10.3760/cma.j.issn.1674-5809.2014.07.004. Mok CCM, Siu AMH, Chan WC, Yeung KM, Pan PC, Li SW. Functional disabilities profile of Chinese elderly people with Alzheimer’s disease - A validation study on the Chinese version of the disability assessment for dementia. Dement Geriatr Cogn Disord. 2005;20(2 3):112–119. https://doi.org/10.1159/000086612. Ma W, Wang H, Cummings J, Yu X. Reliability and validity of Chinese version of neuropsychiatric inventory-questionnaire in patients with Alzheimer’s disease. Chinese Ment Heal J. 2010;24:338–342. Cohen J. Statistical Power Analysis For the Behavioral Sciences. 2nd ed. Hillsdale, New Jersey: Lawrence ErlbaumAssociates; 1988. Bandura A. Self-Efficacy: The Exercise of Control. New York: W.H. Freeman and Company; 1997. Piersol CV, Canton K, Connor SE, Giller I, Lipman S, Sager S. Effectiveness of interventions for caregivers of people with Alzheimer’s disease and related major

ARTICLE IN PRESS S.Y. Zhang et al. / Geriatric Nursing 00 (2019) 1 11

32.

33. 34.

35.

neurocognitive disorders: a systematic review. Am J Occup Ther. 2017;71:(5) 7105180020p1. https://doi.org/10.5014/ajot.2017.027581. Kales HC, Gitlin LN, Lyketsos CG. Assessment and management of behavioral and psychological symptoms of dementia. BMJ. 2015;350:h369. https://doi.org/ 10.1136/bmj.h369. Alzheimer’s Association. 2018 Alzheimer’s disease facts and figures. Alzheimer’s Dement. 2018;14(3):367–429. https://doi.org/10.1016/j.jalz.2018.02.001. Feast A, Orrell M, Charlesworth G, Melunsky N, Poland F, Moniz-Cook E. Behavioural and psychological symptoms in dementia and the challenges for family carers: systematic review. Br J Psychiatry. 2016;208(5):429–434. https://doi.org/10.1192/ bjp.bp.114.153684. Mausbach BT, Chattillion EA, Moore RC, Roepke SK, Depp CA, Roesch S. Activity restriction and depression in medical patients and their caregivers: a metaanalysis. Clin Psychol Rev. 2011;31(6):900–908. https://doi.org/10.1016/j. cpr.2011.04.004.

11

36. Alberti KGMM, Zimmet P, Shaw J. The metabolic syndrome - a new worldwide definition. Lancet. 2005;366(9491):1059–1062. https://doi.org/10.1016/S0140-6736 (05)67402-8. 37. Grundy SM. Metabolic syndrome update. Trends Cardiovasc Med. 2016;26(4): 364–373. https://doi.org/10.1016/j.tcm.2015.10.004. 38. Murphy MR, Escamilla MI, Blackwell PH, et al. Focus on research methods assessment of caregivers’ willingness to participate in an intervention research study. Res Nurs Heal. 2007;30(3):347–355. https://doi.org/10.1002/nur.20186. 39. Gallagher-Thompson D, Singer LS, Depp C, Mausbach BT, Cardenas V, Coon DW. Effective recruitment strategies for Latino and Caucasian dementia family caregivers in intervention research. Am J Geriatr Psychiatry. 2004;12(5):484–490. https://doi.org/10.1097/00019442-200409000-00006. 40. Whitebird RR, Kreitzer MJ, Lewis BA, et al. Recruiting and retaining family caregivers to a randomized controlled trial on mindfulness-based stress reduction. Contemp Clin Trials. 2011;32(5):654–661. https://doi.org/10.1016/j.cct.2011.05.002.