The mediating effects of leisure engagement on relationships between caregiving stress and subjective wellbeing among family caregivers of persons with cognitive impairment: A cross-sectional study

ARTICLE IN PRESS Geriatric Nursing 000 (2019) 1 8

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The mediating effects of leisure engagement on relationships between caregiving stress and subjective wellbeing among family caregivers of persons with cognitive impairment: A cross-sectional study Yi-Chen Chiu, PhDa,e,f,*, Hsu-Chun Liao, MSb, Chia-Lin Li, PhDc, Chia-Hung Lin, MDd, Jung-Lung Hsu, MD, PhDf,g, Chai-Yu Lin, MSh, Wen-Chuin Hsu, MDf a

School of Nursing, College of Medicine, Chung Gung University, No. 259, Wen-Hwa 1st Rd., Kwei-Shan, Taoyuan, 33302, Taiwan School of Nursing, Chang Gung University of Science and Technology, Taoyuan, Taiwan Department of Health Care Management, College of Management, Chang Gung University, Taoyuan, Taiwan d Department of Chinese Medicine, College of Medicine, Chang Gung University, Taoyuan, Taiwan e Healthy Aging Research Center, Chung Gung University, Taoyuan, Taiwan f Department of Neurology and Dementia Center, Chang Gung Memorial Hospital, Linkou, Taiwan g College of Medicine, Chang-Gung University, Taoyuan, Taiwan h Sun Shine Home Care, Zhongli, Taiwan b c

A R T I C L E

I N F O

Article history: Received 24 May 2019 Received in revised form 29 August 2019 Accepted 30 August 2019 Available online xxx Keywords: Cognitive impairment Family caregiver Self-care Leisure engagement Subjective wellbeing

A B S T R A C T

Family caregivers of persons with cognitive impairment experience changes in reductions in leisure engagement, which can decrease their subjective wellbeing (leisure satisfaction, negative affect and positive affect). We recruited 100 dyads of patients with cognitive impairment and family caregivers by convenience sampling from outpatient memory clinics and daycare centers in northern Taiwan. Hierarchical regression analysis tested the mediating effects of leisure engagement on the relationship between caregiving stress and subjective wellbeing. Results indicated that the restorative experience of event/tourism activities (b = 0.23, p < .05) significantly mediated between caregiving stress and leisure satisfaction. In addition, the only significant mediator between caregiving stress and negative affect was leisure barriers (b = 0.21, p < .05). Both of the regression models explained 27% of the variance. Future development of leisure interventions should focus on reducing leisure barriers and providing event and tourism activities to the dyads. (146 words) © 2019 Published by Elsevier Inc.

Introduction Family caregivers (FCGs) play an important role in caring for persons with cognitive impairment (PWCIs) in Taiwan1; 75 85% of PWCIs receive care provided by family and friends.2,3 FCGs of PWCIs often become “hidden patients”4,5 due to a decline in health, which includes alterations to the immune system’s pro-inflammatory cytokines,6 sleep disturbances,7 and cardiovascular disease.8 These health problems are the results of caregiving stress,9 which increases over time due to the progressive nature of dementia, the patients’ behavioral problems, as well as their depressive symptoms.10 These sources of caregiving stress also cause a change in leisure engagement, which is a strategy of coping and a form of self-care for FCGs.11 A reduction in leisure engagement or a restriction in pleasurable activities is associated

*Corresponding author at: School of Nursing, College of Medicine, Chung Gung University, No. 259, Wen-Hwa 1st Rd., Kwei-Shan, Taoyuan 33302, Taiwan. E-mail address: [email protected] (Y.-C. Chiu). https://doi.org/10.1016/j.gerinurse.2019.08.017 0197-4572/$ see front matter © 2019 Published by Elsevier Inc.

with greater depressive symptoms for FCGs,12 and can result in a reduction in subjective wellbeing (SWB) for FCGs.13 Leisure activities can also provide caregivers with a means to improve their relationship with PWCIs14 because these activities facilitate enjoyment, social interaction and connection.15 Therefore, the Taiwan Ministry of Health and Welfare instituted the Long-Term Care Services Policy 2.0 in 2016, and formally addressed issues related to FCGs of PWCIs for the first time by emphasizing the importance of improving (SWB) for FCGs.16 Tyack and Camic17 defined SWB as the “experience of positive emotions, low levels of negative emotions, and high life satisfaction.” This is also reflected in Diener’s tripartite model of SWB, proposed in 1984, which describes how people react to three components: frequent positive affect, infrequent negative affect, and cognitive judgments regarding life satisfaction.18 Positive affect reflects one's level of excitement, interest, and enthusiasm, whereby negative affect reflects one's level of distress, fear, and unpleasantness; life satisfaction is an overall evaluation of life.19 Each domain is distinct but related and has good psychometric properties.20 However, under high levels of stress, positive affect and negative affect tend toward

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collapse into a simple bipolar dimension with highly inversely coupled affect.21 Newman et al.22 argue that the general experience of SWB depends on the importance of key life domains such as leisure, work, and health. Therefore, engaging in multiple areas of leisure has the potential of promoting other dimensions of SWB, leading to improved global SWB.23 Leisure is the time devoted to activities outside of work obligations or work schedule. Engagement in leisure is a personal, subjectively defined experience,22 referring to freedom from work to participate in pleasurable activities that may be shared with others.24 Strang reported that leisure and FCG respite are similar.25 For example, leisure activities, like respite, provide the experience of freedom from caregiving obligations and freedom to choose activities. The experiences of freedom to engage in leisure and respite emerge as powerful forces that expand and nurture caregiver capacities by allowing the caregiver to escape from the caregiver world, and temporally be themselves.26 Engaging in meaningful and gratifying activities provides FGCs with time for reflection, mental peace, and tranquility, liberating renewal and revitalization.25 Therefore, leisure can be a valuable coping and self-care resource for FCGs of PWCIs. Leisure integrates two categories of measures: structural and subjective. Structural measures of leisure emphasize duration or type of leisure activity as well as categories of leisure barriers, such as how many different activities FCGs participate in and how many leisure constraints or barriers they may face.22,27,28 Subjective measures of leisure are defined as how individuals perceive their engagement in an activity, as either a positive or a negative experience.11,22 Positive experiences of leisure engagement include those perceived as restorative, which are viewed as pleasant and enjoyable. Negative leisure experiences result in negative appraisal or a failure to appreciate the importance of restorative experience derived from leisure participation, and are considered leisure dysfunction.11 These two categories of leisure measures, consisting of structural and subjective indicators, can determine the degree of an individual’s leisure engagement.22 Empirical evidence supports the relationships between leisure structural measures, in the form of leisure types, and SWB. For example, Wakui et al.23 reported that Japanese caregivers who engaged in home activities had lower levels of caregiver burden and depressive symptoms as well as greater care satisfaction, while social and peer activities were associated with greater life satisfaction. On the other hand, it is often challenging for FCGs of PWCIs to participate in leisure activity that involves social interactions, due to several factors: social isolation28; PWCIs’ cognitive impairment, and FCGs’ lack of time and energy29; financial constraints, and a decline in health of FGCs.27 These barriers to participating in leisure activities could contribute to further reductions in leisure engagement; in fact, leisure barriers have been shown to be related to low levels of life satisfaction among FCGs of PWCIs.30 Additionally, the subjective measure of leisure, such as restorative experiences, has been shown to be significantly negatively related to the behavioral problems of PWCIs.31 A qualitative study conducted in older adults in Africa living in an institutional setting found leisure participation provided feelings of enjoyment, pleasure and support, as well as a sense of belonging. Another qualitative study demonstrated FCGs who viewed caregiving as a leisure activity were more likely to perceive their caregiving as a freedom rather than an obligation.32 These FCGs described three perceived rewards in their caregiving roles: a sense of enjoyment in care, a sense of connectedness to others in care, and a sense of escape or separation in care.32 Other positive experiences of caregiving include the feeling of accomplishment, resulting from the ability of FCGs to learn and adapt to caregiving tasks.33 In contrast, a negative appraisal toward leisure participation, or the presence of leisure dysfunction, can prevent FCGs from engaging in leisure activities. Leisure dysfunction can result from caregiving

ethics, feelings of guilt, and a sense of responsibility to the FCGs’ care-recipient34; FCGs often prioritized daily life needs of PWCIs above their own leisure needs.11 For example, although previous research has identified loneliness as an issue associated with being an informal caregiver, FCGs often sacrificed other relationships to focus on the care recipients.35 Empirical evidence shows that leisure engagement has a buffering effect on caregiving stress and can significantly impact SWB.30,36 However, few studies have examined these mediating effects of leisure engagement using structural and subjective measures for FCGs of PWCIs. Therefore, there is a gap in knowledge regarding the identity of leisure activities, and the mediating relationship of types of leisure activities and leisure barriers (structural measures), as well as restorative experiences and leisure dysfunction (subjective measures) on SWB for FCGs of PWCIs. Given the cultural diversity in family caregiving and differences in long-term care policies of health care systems worldwide, there is an urgent need to understand the role of leisure activities for FCGs in the cultural setting of Taiwan. Therefore, we hypothesized that leisure engagement would mediate the relationships between caregiving stress and SWB of FCGs of PWCIs in northern Taiwan. Methods Participants and settings This cross-sectional study used a convenience sampling method to recruit 100 dyads of PWCIs and their FCGs from outpatient memory clinics of four hospitals and four daycare centers in northern Taiwan from 2006 2007. We contacted 114 dyads who met the inclusion criteria, however only 109 dyads provided signed informed consent forms. PWCIs were included if they met the following criteria: (1) had a primary FCG or secondary FCG age > = 18 years who was familiar with the patient’s conditions, (2) diagnosed with dementia based on the DSM-IV criteria37 by consensus of the main neurologists at the clinical sites, and (3) had a Clinical Dementia Rating (CDR) score of 0.5 (very mild cognitive impairment) to 3 (severe cognitive impairment).38 Exclusion criteria for PWCIs were: (1) an acute illness, such as impaired sensory function (hearing loss and severe visual impairment), (2) acute agitation that required emergency treatment, (3) chronic alcohol abuse or use of drugs that affect the central nervous system functions, (4) the presence of major psychiatric disorders within the last 2 years, and (5) a neurological or systemic illness (e.g., delirium, hypoxia, unstable thyroid dysfunction). FCGs were those who provided the most assistance in the previous 3 months to the PWCI or who supervised a hired assistant to take care of the PWCI. Co-residence was not required. FCGs were excluded based on the following criteria: (1) having a documented cognitive or mental disorder, such as a severe memory problem or a major affective disorder, (2) having hearing or visual impairments that were not properly corrected, (3) using prescribed drugs known to impair or enhance attention, e.g., antidepressants, barbiturates or other depressants, or amphetamines, and (4) having an insufficient command of Mandarin, Taiwanese, or Hakka. Measures Demographic data and clinical data were collected for the PWCIs, including diagnosis and severity of dementia. Demographic data for the FCGs included relationship to the patient, whether living with the patient, duration of caring, assistance from other family members (yes or no), and total caregiving hours each day (Table 1). The Clinical Dementia Rating (CDR) scale38 determined dementia severity for PWCI. The CDR scale rates impairment in six cognitive

ARTICLE IN PRESS Y.-C. Chiu et al. / Geriatric Nursing 00 (2019) 1 8 Table 1 Characteristics of family caregiver dyads (N = 100): Persons with cognitive impairment (PWCIs) and family caregivers (FCGs). Characteristic PWCIs Gender Male Female Age (years) Marital status Married Divorced Separated Widow/widower Education (years) Clinical characteristics Dementia diagnosis Alzheimer’s disease Mixed dementia Vascular dementia Other Assessment scale scoresa CDR 0.5 1 2 3 MMSE BEHAVE-AD CSDD FCGs Gender Male Female Age (years) Marital status Married vDivorced Separated Widow/widower Education (years) Employment status Employed full-time Employed part-time Unemployed Relationship to PWCI Spouse Child Daughter-in-law Grand-child Living with PWCI Yes No Care assistance Yes No Weekly care time (hours) Total time as FCG (months) Depressive symptoms CESD-10

n

Mean

SD

Range

77.50

8.47

52 97

6.59

5.36

0 19

13.71 4.72 3.92

6.62 4.70 3.96

0 28 0 28 0 20

54.35

14.60

24 89

11.87

4.55

0 24

68.60 40.67

57.06 33.88

4 168 3 168

6.66

5.82

0 24

40 60

52 1 1 46

68 21 5 6

22 39 31 8

39 61

11 82 6 1

45 50 5 29 52 16 3 80 20 80 20

Note. CDR, Clinical Dementia Rating; MMSE, Mini Mental State Examination; BEHAVEAD, Behavioral Pathology in Alzheimer’s Disease; CSDD, Cornell Scale of Depression in Dementia; CESD-10, Center for Epidemiological Studies-Depression Scale-10 items. a Data collected from patient’s medical charts.

domains: memory, orientation, judgment-problem solving, community affairs, home and hobbies, and personal care. The CDR is scored with a 5-point scale: 0 = normal, 0.5 = questionable, 1 = mild, 2 = moderate, and 3 = severe. The CDR demonstrates good internal consistency,38,39 while the CDR-Chinese version has been proven to have good reliability and validity.40 PWCIs with CDR scores from 0.5 to 3 were recruited because most of community dwelling PWCIs were within these rages of severity.31 The Mini-Mental State Examination (MMSE) was used to evaluate cognitive function.41 The MMSE is a short performance test used to

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assess global cognitive impairment based on the following five domains: orientation, registration, attention and calculation, recall, and language. The maximum score is 30. The Chinese MMSE showed high criterion-related validity with the Wechsler Adult Intelligence Scale (0.776, p < .0001).42,43 A higher score indicates better cognitive performance. Behavioral disturbances of the PWCIs were measured with the Behavioral Pathology in Alzheimer’s Disease (BEHAVE-AD) scale,44 which is widely used to assess the neuropsychiatric symptoms of dementia. Symptoms are clustered into seven groups: paranoid and delusional ideation, hallucinations, activity disturbances, aggressiveness, diurnal rhythm disturbance, affective disturbance, and anxiety and phobias. The 25-item instrument uses a 4-point scale (0 3) with a total score that ranges from 0 to 75. The Chinese version of the BEHAVE-AD44 has a Cronbach’s a of 0.65 and test-retest reliability of 0.69 to 80. Higher scores indicate greater severity of behavioral disturbances. 45 The Cornell Scale for Depression in Dementia (CSDD) was used to measure depressive symptoms of PWCIs.46 The CSDD is a 19-item scale with five subscales regarding mood-related signs, behavioral disturbance, physical signs, and ideational disturbance. The items are rated from 0 to 2 (0 = absent, 1 = mild or moderate, 2 = severe); total scores range from 0 to 38, with a higher score indicating greater depression. The CSDD was translated into Chinese and tested for validity and reliability by Lin and Wang.47 The content validity index (CVI) was good (0.92), with significant inter-rater agreement over a two-week period (Kappa= 0.43 .89) and a Cronbach’s a of 0.84 for internal consistency reliability. We collected information regarding scores for CDR, MMSE, BEHAVE-AD, and GDS-S from the outpatient charts of the PWCIs and, therefore, did not calculate their values of Cronbach’s a for this study. Depressive symptoms of the FCGs were measured with the Chinese version of the Center for Epidemiological Studies-Depression Scale 10 (CESD-10),48,49 which uses 10 items to measure depressive symptoms of FCGs in the past week. Two items (#9 and #10) measure positive affect, while items 1 8 measure negative affect. The frequency of each item is scored on a 4-point scale, from 0 = rarely or never to 3 = most of or all the time; total scale scores range from 0 to 30, with higher scores indicating higher levels of depressive symptoms. A cut-off score of 10 indicates the presence of depression.49 The Chinese CESD-10 demonstrated good internal consistency reliability (0.78 .87) and good stability (0.39 .46).50 In this study, the Cronbach’s a for the CESD-10 was 0.846. Leisure participation of FCGs was measured with the Restorative Activity Questionnaire-Family Caregiver (RAQ-F), which was developed by the first author to measure leisure engagement for FCGs based on a review of relevant literature regarding activities that are restorative for the general population,51 caregivers,11 and older adults in Taiwan.52 The RAQ-F is a self-report questionnaire using six measures of leisure engagement, both structural and subjective: Leisure Participation (LP, 26 items), Leisure Barriers (LB, 2 items) and Frequency of LP (possible 26 items), are structural measures; Restorative Experiences (RE, possible 26 items), Leisure Dysfunction (LD, 6 items), and Leisure Satisfaction (LS, 1 item), are subjective measures. The LP subscale is measured with a checklist of 26 common leisure activities in Taiwan; 18 are individual activities and 8 are group activities. Each activity is rated for participation with a response of yes/no. Frequency of LP is determined for activities rated as yes: 1 (less than once per month), 2 (2 3 times per month), 3 (1 2 times per week) or 4 (almost every day). The RE subscale determines the FCGs subjective feelings towards the restorative qualities of each leisure activity. FCGs are asked to endorse seven experiences when engaging a specific activity listed in LP, such as ‘taking a walk to feel at ease’, from 1 (never) to 5 (always). The RE scores for each participated activity are calculated as the

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mean of the sum for all the seven experiences. If the FCG does not engage in the activity, the corresponding RE score is 0. Therefore, the RE for each leisure activity ranges from 0 5. Higher scores of RE indicate a more positive appraisal of leisure experiences. The score for LD is a subjective measure of FCGs’ negative appraisal toward leisure participation, such as ‘I feel anxious or uncomfortable when I have spare time’; the six statements are scored from 1 (strongly disagree) to 5 (strongly agree). The total score for LD is the sum of all items; a higher score indicates a higher level of leisure dysfunction. LB measures the FCGs’ reasons of what prevents them from engaging in leisure activities using two items: Less participation in leisure activities due to (1) decline in health and (2) various other reasons such as financial issues, lack of social support, unemployed. These items are answered with a yes/no response. Higher scores for LB indicate more barriers to leisure. The LS score is determined by rating the question, “Overall, how satisfied are you with your leisure activity? Score: __/100.” The RAQ-F was examined by 5 clinical experts and a mean Content Validity Index was 0.85. Face validity was determined by 33 FCGs of PWCIs, who reported no difficulties in understanding the questionnaire. Therefore, no further modification was made. The rates of participation in clubs and formal group activities was low for FCGs, therefore only the data for individual leisure activities were used to examine the effects of leisure types and LB (two structural measures) on SWB for FCGs of PWCIs. The results of exploratory factor analysis for the RE subscales indicated two leisure activity experiences (playing cards or chess, and fishing) loaded equally in one factor without adequate reliability (Cronbach’s alpha = 0.35), therefore were deleted. The remaining 16 individual leisure activities were divided into three groups based on the restorative experiences: outdoor fascinating activity experiences (the restorative experiences derived from 11 activities, Cronbach’s alpha = 0.85), home-based social activity experiences (the restorative experiences derived from 3 activities, Cronbach’s alpha = 0.55), events and tourism experiences (the restorative experiences derived from 2 activities, Cronbach’s alpha = 0.57). Therefore, the final version of the RAQ-F consisted of the scores for LP (3 types, 16 items for individual activities), RE (range 0 80), LB (range 0 4), LD (range 6 30), and overall satisfaction (range 0 100) (Table 2). Procedures This project was approved by the institutional research board of the study hospital (IRB # 94-560). Dyads were informed of the study procedures by research assistants familiar with the test battery. Both research assistants were licensed nurses with several years of clinical experience and had received adequate training from the principal investigator; the inter-rater reliability was 80%. The trained research assistants explained the study to the dyads and obtained signed consent forms (one form for PWCIs, one form for FCGs) based on the Declaration of Helsinki. All data remained anonymous without any links to personal identity. Statistical analyses PASW Statistics 18 software was used for all statistical analyses. First, data were cleaned by performing frequency and descriptive analyses to check for outliers. Second, the normalcy of the distribution, along with skewness and kurtosis, were examined to identify those variables that would benefit from data transformations, but no data were transformed. Third, Pearson correlation coefficients and hierarchical regression models (controlling for covariates identified from univariate analyses) determined the relationships between the main variables such as demographic factors for the PWCIs and FCGs, clinical symptoms of the PWCIs (BEHAVE-AD and CSDD scores) and

Table 2 Variables of leisure engagement from the Restorative Activity Questionnaire-Family Caregiver (RAQ-FC): mean scores for Restorative Experience, Frequency of Leisure Activity, and Leisure Satisfaction (N = 100). Variables of Leisure Engagement Structural measures Types of Leisure Activitiesa (16 items) Outdoor fascinating types (11 items) Home-based social types (3 items) Event and tourism types (2 items) Subjective measures Restorative Experiences of Activitiesa Outdoor fascinating activity experiences Home-based social activity experiences Event and tourism activity experiences Leisure Dysfunction Leisure Barriers Overall Range of Leisure Satisfaction rating 0 20

n

Mean

100 100 100 100

5.73 2.31 0.62

SD

%b,c

0.77 52.0 0.71 77.0 0.74 31.0

21 40

100 100 17.62 11.18 100 6.56 2.86 100 2.05 2.69 100 7.33 4.04 100 2.90 0.80 100 63.39 23.19 8 7

41 60

32

61 80 81 100

35

Range

0 11 0 3 0 2

0 80 1.60 0 50 2.19 0 15 1.03 0 10 6 30 0 4 0 100

18

Note: SD, standard deviation. a Classification of leisure activities was based on the results of exploratory factor analysis of restorative experience. b % = mean activity number divided by total activities. c % = mean activity restorative experience divided by total activities.

the five measures of leisure engagement for the FCGs determined by RAQ-F scores (type, LB, RE, LD, LS) and FCGs’ positive and negative affects derived from depressive symptoms (CESD-10 scores). Sample size was based on Hair et al.,53 with a minimum R2 of 12 15,54 power of 0.80 for 5 10 independent variables, and an alpha level of significance set at 0.5; the required sample size was determined to be between 50 and 100. Therefore, our sample size (n = 100 dyads) was adequate for the selected analyses. Results Characteristics of PWCIs and FCGs A total of 109 dyads provided written consent, however only 100 dyads completed the study. Five dyads failed to complete the questionnaires, due to the inconvenience of time; four dyads dropped out due to relocation (n = 1) and refusal to continue with the study (n = 3). Therefore, data were analyzed from 100 dyads whose characteristics are shown in Table 1. Of the 100 PWCIs, 60% were female, the mean age was 77.60 years (SD = 8.47) and 68% of PWCIs had been diagnosed with Alzheimer’s disease; 39% had mild dementia severity (CDR = 1). Mean scores for the MMSE were 13.71 (SD = 6.62); BEHAVE-AD mean scores were 4.72 (SD = 4.70); and mean scores for the CSDD were 3.92 (SD = 3.96). Most FCGs (61%) were female, the mean age was 54.35 years (SD = 14.60), and 82% were married. Half of the FCGs (52%) were children of the PWCI, and 87% resided with the PWCI; most received help or support from other family members; and mean caregiving duration was 40.67 months (SD = 33.88). The mean score on the CESD-10 was 6.66 (SD = 5.82). The demographic factors of the dyads are similar to those reported by the Taiwan Alzheimer’s Disease Association (2012).1 Leisure engagement for FCGs Measures for the variables of leisure engagement for FCGs, determined by the RAQ-FC, are shown in Table 2. Structural measures of participation in leisure engagement varied: 52% participated in outdoor fascinating activities; the highest rate was home-based social

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1 .068 .132 0.107 1 0.011 .296** 1 1.PWCI’s age 1 .061 2. PWCI’s education (years) 1 3. MMSE (PWCIs) 4.BEHAVE-AD (PWCIs) 5.CSDD (PWCIs) 6.FCG age 7.FCG education (years) 8 FCG caring duration (months) 9.FCG caring time (weeks) 10. # of outdoor fascinating act. 11. # of home-based social act. 12. # of events and tourism act. 13. Outdoor fascinating act. exp. 14. Home-based social act. exp. 15. Events and tourism act. exp. 16. Leisure dysfunction 17. Leisure barriers 18. Leisure satisfaction 19. Negative affect 20. Positive affect

Note: PWCIs = persons with cognitive impairment; FCGs = family caregivers; MMSE = Mini Mental State Examination; BEHAVE-AD = Behavioral Pathology in Alzheimer’s Disease; CCDD = Cornell Scale of Depression in Dementia. a Pearson’s correlations. * p < .05;. ** p < .01.

0.063 0.070 0.080 .436** .434** 0.084 .105 0.095 .032 0.150 0.072 0.192 0.193 0.135 0.214* .058 .363** 0.357** 1 .155 0.058 0.055 0.220* 0.211* 0.098 .219* 0.086 0.132 .323** .065 .322** .363** .220* .355** 0.264** 0.257** 1 .025 .079 .075 .326** .292** .051 0.065 .222* .202* 0.108 0.106 0.169 0.138 0.145 0.162 .095 1 0.088 .023 0.169 .008 0.049 .150 0.088 0.112 .193 0.284** 0.171 0.182 0.351** 0.218* 0.230* 1 .093 .067 .217* 0.091 .005 .000 0.144 0.094 0.164 .473** .156 .959** .540** .217* 1 0.001 0.117 .023 0.212* 0.064 0.090 0.038 .178 0.152 .235* .825** .166 .371** 1 0.089 0.146 .019 0.232* 0.145 0.435** .300** .080 0.342** .903** .194 .453** 1 .097 .061 .241* 0.090 .021 .074 .096 0.130 0.148 .455** .171 1 0.036 0.242* 0.058 0.190 0.096 .020 0.208* .034 0.132 .183 1 0.137 0.142 .040 0.234* 0.140 0.401** .241* .012 0.317** 1 .047 .312** 0.024 .133 0.011 .530** 0.379** .088 1 0.019 .175 .001 0.062 0.019 .097 .022 1 .001 .215* 0.036 .126 .084 0.311** 1 .313** .333** .103 .034 0.068 1

15 14 13 12 11 10 9 8 7 6 5 4 3 2 1 Variables

Table 3 Correlationsa between demographics of the dyads, symptoms of PWCIs, and leisure activity indicators for FCGs (n = 100).

Pearson’s correlation coefficients determined if there was a relationship between demographics or symptoms of PWCIs and demographics or leisure activities of FCGs (Table 3). There were no significant relationships between the demographic factors of the dyads and three leisure outcomes of SWB for FCGs, except for FCGs’ educational level, which was significantly and positively correlated with leisure satisfaction (p < .01). PWCIs’ behavioral problems and depressive symptoms were significantly related to all three measures of FCGs’ SWB (r = 0.298 to 0.436, respectively; p < .05 and 0.01), suggesting that FCGs of PWCIs with more severe symptoms were more likely to have lower levels of SWB. The number of outdoor fascinating activities and event/ tourism activities were significantly and positively related to leisure satisfaction (r = 0.323 and 0.322, p < .01, respectively). Similarly, the number of event and tourism activities were significantly and positively associated with positive affect (r = 0.225, p < 0.05). Leisure barriers were significantly and negatively correlated with leisure satisfaction (r = 0.257, p < .01) and significantly but positively correlated with caregivers’ negative affect and caregiving time (r = 0.363 and 0.202, p < 0.01). However, correlation coefficients between the number of leisure activity types and leisure barriers were not significant. In sum, FCGs of PWCIs who experienced more caregiving stress were more likely to experience lower levels of SWB. Structural measures of leisure, such as the number of different leisure activity types and leisure barriers were significantly related to some of the domains of SWB. Subjective measures of leisure engagement such as restorative experiences for outdoor fascinating activities, home-based activities, and event/tourism activities were correlated with each other at different strengths (r ranged from 0.217 to 0.540, p < .01), indicating these three types of leisure activities are similar but distinct constructs. There were also significant and positive correlations between two restorative experiences and leisure satisfaction as well as positive affect: fascinating outdoor activities (r = 0.363, p < .01and 0.239, p < .05, respectively) and home-based social activities (r = 0.220 and 0.246, respectively; p < .05). The restorative experience of engaging in event and tourism activities was significantly correlated with three outcomes of SWB: leisure satisfaction (r = 0.355, p < .01), negative affect, and positive affect (r = 0.214, and 0.249, p < .05, respectively). Although the restorative experience for all three leisure activities was significantly and negatively correlated with leisure dysfunction: outdoor fascinating (r = 0.351, p < .01), home-based (r = 0.218, p < .05), and events and tourism (r = 0.230, p < .05), leisure dysfunction was significantly and negatively correlated with leisure satisfaction (r = 0.257, p < .01). In sum, subjective leisure measures for FCGs were significantly correlated with some domains of SWB, while leisure satisfaction was significantly correlated with negative affect and positive affect (r = 0.357 and 0.287, respectively, p < .01); positive affect was significantly and negatively correlated with negative affect (r = 0.542, p < .01). Finally, Table 3 shows that the number of each type of leisure activity was highly correlated with the corresponding restorative experience (r = 0.959 to 0.825, p < .01). However, Berman et al.55 reported that leisure experiences can alleviate negative affect. Therefore, we excluded measures for number of leisure activities, and used only measures for restorative experiences in the following regression analyses to avoid multicollinearity.

16

17

Relationship between variables for FCGs and PWCIs

.031 .085 .008 .719**

18

19

20

activities (77%); the lowest (31%) was event and tourism activities. The mean subjective measure of restorative experiences for leisure engagement was low to moderate for all experiences and low for leisure dysfunction (mean = 7.33, SD = 4.04; range 6 30). In addition the mean score for leisure barriers was high (mean = 2.90, SD = 0.80; ranges 0 4). The level of overall leisure satisfaction was moderate (mean = 63.39, SD = 23.91; ranges 0 100); 53% of FCGs (n = 53) rated their leisure satisfaction from 61 100.

5

.143 .071 .013 0.298** 0.266** .099 0.144 .121 .031 .150 .178 .225* .239* .246* .249* 0.112 0.077 .287** 0.542** 1

Y.-C. Chiu et al. / Geriatric Nursing 00 (2019) 1 8

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Table 4 Hierarchical regression analysis of leisure satisfaction of FCGs (n = 100). Model/Independent variables Model 1 BEHAVE-AD CSDD FCG education Model 2 Leisure barriers Leisure dysfunction Model 3 Outdoor fascinating activity experiences Event and tourism experiences Home-based social activity experiences 2 R DR2 DF

Model 1 B

0.89 0.64 1.32**

Model 2 b

0.175 0.106 .25**

.12** 4.19**

B

Table 5 Hierarchical regression analysis of negative affect for FCGs (n = 100). Model 3

b

B

b

0.575 0.694 1.12**

0.113 0.106 .21**

0.17 0.98 .89

0.03 0.16 .17

4.52 1.40**

0.15 0.24**

0.35 0.92

0.12 0.16

.12

.06

1.99*

.23*

.74

.09

.20** .08** 4.74**

.27** .07** 3.00**

Note: B = regression coefficient; b = Standardized regression coefficient; Regression modes were decided by entry procedure; BEHAVE-AD = Behavioral Pathology in Alzheimer’s Disease scale; CSDD = Cornell Scale of Depression in Dementia. * p < .05. ** p < .01.

Mediating effects of leisure engagement To more closely investigate the relationship between caregiving stress and caregivers’ SWB, we examined the mediating effects of FCGs’ leisure engagement using hierarchical regression analyses. We first conducted tolerance tests for collinearity among predictors. None had tolerance scores > 0.1 or VIF >5, suggesting no collinearity.56 Variables with a significant correlation with outcomes of SWB for FCGs (leisure satisfaction, negative and positive affects) were entered in the 3-level hierarchical regression models (Table 4). When leisure satisfaction of FCGs was treated as an outcome, Model 1 showed educational level of FCGs significantly predicted leisure satisfaction (b = 0.25, p < .01), explaining 12% of the variance (R2 = 0.120, p < .01). In Model 2, leisure barriers and leisure dysfunction were added, which resulted in educational level and leisure dysfunction (the subjective measure of leisure) as significant predictors of FCGs’ leisure satisfaction (b = 0.21 and 0.24, respectively. p < .01), explaining an additional 8% of the variance and a total of 28% variance was explained. In Model 3, we added the restorative experiences of the three types of leisure activities. Only the subjective measure for leisure engagement, namely the restorative experience of event/ tourism activities, was a significant predictor of FCG leisure satisfaction (b = 0.23, p < .05), explaining an additional 7% of the variance. The final model shows that a total of 27% variance was explained. We also examined the outcome of negative affect for FCGs (Table 5). In Model 1, the behavioral problems of PWCIs, measured by BEHAVE-AD, significantly predicted negative affect for FCGs (b = 0.26, p < .05), explaining 22% of the score variance (R2 = 0.22, p < .01). Leisure barriers were then added into Model 2, which was a significant predictor of FCGs’ negative affect (b = 0.54, p < .01), explaining an additional 5% of score variance, for a total of 27% variance being explained. In Model 3, we added restorative experiences of event and tourism activities; leisure barriers were the only significant predictor of FCGs’ negative affect (b = 0.21, p < .05), explaining an additional 3% of score variance, for a total of 30% variance being explained. Discussion This research extends previous work on the health benefits of selfcare, such as leisure engagement for FCGs of persons with cognitive impairment. Our findings confirmed the hypothesis that leisure

Model 1 Model/Independent variables

B

b

Model 2 B

b

Model 1 BEHAVE-AD .26* .13* .20 .13 CSDD .29 .15 .26 .15 Model 2 Leisure barriers 1.36** .54** Model 3 Event and tourism experiences R2 .22** .27** DR2 .22** .05** DF 13.70** 6.29**

Model 3 B

b

.17 .29*

.18 .25*

1.21*

.21*

0.29

0.17 .27** .03** 3.55**

Note: B = regression coefficient; b = Standardized regression coefficient; Regression modes were decided by entry procedure; BEHAVE-AD = Behavioral Pathology in Alzheimer’s Disease scale; CSDD = Cornell Scale of Depression in Dementia. * p < .05. ** p < .01.

engagement can play an important role in mediating the relationship between caregiving stress and subjective wellbeing for FCGs of PWCIs in northern Taiwan. This study introduced a novel perspective to examine the mediating effects of leisure engagement using structural and subjective measures of SWB. Using structural and subjective measures allowed us to determine that caregiving stress of FCGs resulting from the behavioral problems and depressive symptoms of PWCIs was significantly related to the structural measure of leisure barriers, which also demonstrated a significant mediating effect on the relationship between FCG stress and negative affect for FCGs of PWCIs. The behavioral problems of PWCIs also were significantly correlated with three measures of SWB: leisure satisfaction, positive affect and negative affect. These results indicate that FCGs of PWCIs with more severe symptoms are more likely to have higher levels of leisure barriers and lower levels of SWB. A study by Stevens et al.57 reported similar findings: FCGs who spent more time in handling patients’ activities of daily living experienced lower leisure time satisfaction. Romero-Moreno et al.58 also reported that leisure satisfaction of FCGs was negatively correlated with frequency of behavioral problems of PWCIs. Inne (2009) argued that leisure time is no longer defined by those activities performed within the context of the work-non-work dichotomy.59 For FCGs, leisure activities are increasingly dependent on the relationship between family members and the PWCIs. One qualitative study found the increased workload of spouses since becoming caregivers required allocating more time to meet the daily needs of the patient as well assuming more responsibility for managing household tasks.36 The increased time spent on tasks and caregiving duties become leisure barriers, which can leave limited time for shared leisure activities for the dyads.36,60 We also found that FCGs with higher educational levels demonstrated higher levels of leisure satisfaction. FCGs with more education might recognize leisure as an effective coping resource against stress.61 Future research could design skill training programs based on the educational background of the FCG in order to help FCGs manage patients’ symptoms, provide social support for reducing the levels of caregiving stress,62 limit leisure barriers,63 and enhance their ability to pursue leisure and improve their SWB. Hierarchical regression analysis also highlighted the mediating effects of the subjective measure of restorative experiences derived from event/tourism on the relationship between caregiving stress and negative affect. Our results showed that caregivers who engaged in greater varieties of outdoor fascinating activities and event/tourism activities were more likely to experience leisure satisfaction. Mausbach et al.64 reported that the total number of leisure activities was significantly correlated with positive affect for FCGs of persons

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with dementia. In addition, restorative experiences derived from engaging in event/tourism activities was the only significant predictor of leisure satisfaction for FCGs. Bratman et al. reported that nature experiences can reduce rumination, which is a prolonged and maladaptive attention to negative and personal emotions and a risk factor for depression.65 A 90-minute walk outside in nature could distract participants’ attention away from ruminating about negative feelings. Therefore, having a variety of leisure activities, especially participating in events/tourism can be a means of enhancing leisure satisfaction in FCGs. Increasingly, it is more common for PWCIs and their FCGs go on vacation and participate in tourist activities together.66 Engagement in shared leisure activities allows caregivers to gain greater satisfaction from their role and perceive it more positively.14 This highlights the importance of the caregiver-patient dyad in promoting “both members’ well-being”, and overcome the drawback of respite care for only FCGs.16 There was a high correlation coefficient for FCGs between positive affect and negative affect (r = 0.542). Affective complexity theory21 suggests that under high levels of stress, the complex relationships between positive affect and negative affect are highly negatively correlated. Therefore, the high negative correlation coefficient between positive and negative affect suggests the FCGs in our study experienced high levels of stress, which might explain why there was no significant predictor for positive affect in our hierarchical regression model. It is also possible that we did not include essential factors that are predictors of positive affect for FCGs of PWCIs. In view of the fact that our final regression models explained only 27% of the leisure satisfaction variances, future research should be conducted with more sophisticated structural and subjective measures of leisure engagement, such as time spent on leisure, as well as quality and quantity.57 It is also possible that our hierarchical regression models did not include all important variables, such as whether the dyads engage in leisure activities together. Carbonneau et al.67 found that leisure activities not only had a positive impact on FCGs, but also provided satisfaction when the dyad shared pleasant moments together. Therefore, future research should investigate the role of companionship of the dyads in leisure engagement. This study had several limitations. First, although power analysis results showed that our sample size was adequate to conduct the hierarchical regression analyses, the sample size of FCGs might limit generalizability of our findings. Second, this was not a longitudinal study designed to determine the causal relationships between leisure participation and leisure SWB. However, Mausbach et al.64 investigated a “reverse” test in which depressive symptoms were placed as the mediator of activity restriction. In this analysis, the results were not significant, thereby offering future researchers a glimpse of the potential importance of activity participation for explaining SWB in FCGs of PWCIs. Third, when designing event and tourism activities for the dyads, the concept of leisure barriers should be extended to the intrapersonal, interpersonal, and structural barriers that can prevent leisure participation.63 Intrapersonal barriers are connected with the caregiver’s fear that the PWCI will get lost when participating in an activity in a novel environment. Interpersonal barriers involve the FCG’s perception that the PWCI is unable to engage in leisure activities. Structural barriers involve issues such as accessibility of touring sites, availability of wheelchair ramps, and the cost of travel insurance. These leisure barriers or constraints may contribute to FCGS and PWCIs from enjoying even simple outings together.63 Despite the limitations, our findings expand our understanding of leisure engagement for FCGs of PWCIs. First, we developed leisure engagement measures, which included types of leisure activities and leisure barriers as structural measures of leisure. Our subjective measures of leisure include restorative experiences derived from leisure engagement and leisure dysfunction. These indicators have been tested in community-dwelling older adults,32 persons with cognitive

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impairment,32 and FCGs.68 Thus, these indicators have various applications when studying leisure engagement. Second, we examined the mediating effects of leisure engagement on the relationship between caregiving stress of caring for persons with dementia and caregivers’ SWB. We determined leisure barriers and restorative experiences are important mediators of SWB for FCGs. These results address a recent 10-year, long-term-care policy 2.016 to mobilize more resources to target populations of FCGs of PWCIs in Taiwan. Conclusions and recommendations The results of this study can be used to influence clinical practice and inform policy decisions regarding improving leisure SWB of FCGs of PWCIs. Healthcare providers should advocate for leisure engagement as a method of care and a strategy for coping with stress for FCGs of PWCIs. Custom-tailored programs could be designed to increase leisure engagement and provide support for these dyads, which could empower them to take an active role in meeting their leisure needs. Declaration of Competing Interest The authors report no conflict of interest Acknowledgments This work was supported by the Chang Gung Memorial Hospital Funding under the Grant CMRPD140281, CMRPD1A0042, EMRPD1H0361, and EMRPD1H0551. References 1. Taiwan Alzheimer’s Disease Association. Dementia: dementia population. 2012. http://www.tada2002.org.tw/tada_know_02.html; Accessed May 15, 2019. 2. Directorate-General of budget, accounting & statistics, executive Yuan, Taiwan, survey of social development trends in health security in Taiwan 2004. http://win. dgbas.gov.tw/dgbas03/ca/society/index.html; Accessed May 15, 2019. 3. Department of Statistics, Ministry of the Interior, Taiwan. Statistics report: important indicators. 2015. http://www.moi.gov.tw/stat/; Accessed May 15, 2019. 4. Alzheimer’s Association. Living with Alzheimer’s: impact on caregivers. 2015. http://www.alz.org/facts/; Accessed May 15, 2019. 5. Zarit SH, Orr NK, Zarit J. The Hidden Victims of Alzheimer’s disease: Families under Stress. New York, NY; New York: University Press; 1985. 6. Cheng KC, Chiu YC, Lee YN, Liao SK, Lee SH. Relationships between stress perception and stress biomarkers in family caregivers. J Nurs Res. 2011;58(3):43–52. https://doi.org/10.6224/JN.58.3.43. 7. Chiu YC, Lee YN, Wang PC, et al. Family caregiver’ sleep disturbance and its associations with multilevel stressor when caring for patients with dementia. Aging Ment Health. 2014;18(1):92–101. https://doi.org/10.1080/13607863.2013.837141. 8. Mausbach BT, Patterson TL, Rabinowitz YG, et al. Depression and distress predict time to cardiovascular disease in dementia caregivers. Health Psychol. 2007;26 (5):539–544. https://doi.org/10.1037/0278-6133.26.5.539. 9. Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci. 2009;11:217–228. 10. Pearlin LI, Mullan JT, Semple SJ, et al. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist. 1990;30:583–594. https://doi. org/10.1093/geront/30.5.583. 11. Canin LH. Psychological restoration among AIDS caregivers: maintaining self-care, Ann Arbor: The University of Michigan; 1991. 12. Mausbach BT, Coon DW, Patterson TL, et al. Engagement in activities is associated with affective arousal in Alzheimer’s caregivers: a preliminary examination of the temporal relations between activity and affect. Behav Ther. 2008;39:366–374. https://doi.org/10.1016/j.beth.2007.10.002. 13. Cunningham N, Cunningham TR, Robertson J. Understanding and measuring the wellbeing of careers of people with dementia (Forthcoming/Available online). Gerontologist. 2018. https://doi.org/10.1093/geront/gny018. 14. Carbonneau H, Caron C, Desrosiers J. Development of a conceptual framework of positive aspects of caregiving in dementia. Dementia. 2010;9(3):327–353. https:// doi.org/10.1177/1471301210375316. 15. Dupuis SL, Whyte C, Carson J, et al. Just dance with me: an authentic partnership approach to understanding leisure in the dementia context. World Leis J. 2012;54 (3):240–254. https://doi.org/10.1080/04419057.2012.702454. 16. Ministry of Health and Welfare (MOHW) of Taiwan. The Ten-year Long-Term Care Plan 2.0, Prospectus 2.0. 2016. https://www.ey.gov.tw/Upload.aspx?; Accessed May 1, 2019.

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