The relationship between psychological resources,social resources,and depression: Results from older spousal caregivers in Hong Kong

Objectives: The rapidly ageing population in Hong Kong has led to a major concern in providing care for the elderly. Due to the current social changes in Hong Kong, such as smaller family size, longer life spans, and increasing employment demands, spouses increasingly serve as the primary caregivers for older adults. To explore the mental health of older spousal caregivers, this study investigated the relationships between psychological resources, social resources, and depression.

Method: One hundred fifty-eight spousal caregivers aged 55 and above were recruited from 13 caregiver resource centres in Hong Kong. Data were collected using structured questionnaires.

Results: Hierarchical regression analysis revealed that the number of duties and psychological resources including purpose in life, caregiver burden, and personal wellbeing explained 56% of the variance in depression. Logistic regression analysis further indicated that purpose in life predicted the likelihood of depression reported by caregivers. Social resources did not significantly predict depression.

Conclusion: Results suggest that mental health enhancement programs should be developed for Chinese spousal caregivers with a focus on purpose in life, burden, and personal wellbeing.     

Group living homes for older people with dementia: The effects on psychological distress of informal caregivers

Objectives: The aim of this study was to investigate the effects of group living care for people with dementia on the psychological distress of informal caregivers, compared with regular nursing home care.

Method: This study had a quasi-experimental design with two measurements. 67 primary informal caregivers in 19 group living homes and 99 primary informal caregivers in seven regular nursing homes filled in a questionnaire upon admission (baseline measurement) of their relative and six months later (effect measurement). Linear and logistic regression analyses were performed on three outcomes of psychological distress – psychopathology, caregiving competence and caregiver burden.

Results: There were no significant differences in caregiver competence and caregiver burden between informal caregivers of residents in group living homes and those in regular nursing homes, although there was a trend towards less psychopathology in group living homes after adjustment for confounding.

Conclusion: Informal caregivers of residents in group living homes do not have less psychological distress than informal caregivers of residents in regular nursing homes. Although there was a trend towards less psychopathology in informal caregivers of group living homes, the amount of symptoms remained very high in both caregiver groups. This means that the psychological well-being of caregivers deserves the continuing attention of health care providers, also after admittance of their relative in a nursing home facility.     

Association between cultural factors and the caregiving burden for Chinese spousal caregivers of frail elderly in Hong Kong

Objectives: The aim of this study was to explore the relationship between cultural factors and the caregiving burden of Chinese spousal caregivers who provided care to their frail partners.

Method: A sample consisting of 102 Chinese caregivers for frail elderly spouses was recruited from home care services across various districts in Hong Kong. Structured interviews were conducted with the participants in their homes, measuring demographics, the functional status of the spouse, the degree of assistance required in daily care, perceived health, the caregiver's orientation to traditional Chinese family values, social support, coping, and caregiver burden.

Results: Findings of regression analysis indicated that gender, activities of daily living (ADL) status, orientation to traditional Chinese family values, passive coping, and marital satisfaction associated with caregiver burden. Being female, having lower functioning in ADL or a strong orientation toward traditional Chinese family values, employing the strategies of passive coping more frequent, or experiencing a low degree of marital satisfaction were associated with high levels of caregiver burden.

Conclusion: These findings provided a basis for developing appropriate interventions to minimize the caregiver burden of spousal family caregivers.     

Predictors of caregiving burden: impact of subjective health,negative affect,and loneliness of octogenarians and centenarians

Objectives: This study aimed (1) to determine whether octogenarian and centenarian care recipients’ self-report on physical, social, and emotional status are different from caregivers’ reports, (2) to assess associations between octogenarian and centenarian care recipients’ poor physical, social, and emotional status and caregiver burden, and (3) to determine which report, the care recipients’ self-report or caregivers’ report, about the participants’ physical and emotional status predicted more accurately levels of caregiver burden.

Method: Self-ratings and caregiver informant ratings were obtained from 309 participants of the Georgia Centenarian Study. Care recipients’ health, negative affect, and loneliness were reported by both the caregivers and care recipients for the analyses. Differences between care recipients’ and caregivers’ reports were assessed by t-test. Blockwise multiple regression analysis was computed to assess predictors of caregiver burden.

Results: Caregivers’ reports on the three measures were significantly higher than self-reports. Caregivers’ negative affect and loneliness, not physical health, reported by caregivers predicted higher caregiver burden. Care recipients’ reports did not predict caregiver burden.

Conclusion: Caregivers perceived care recipients’ social and emotional status more negatively, and caregivers’ negative perceptions on care recipients’ well-being status were an important predictor of caregiver burden.     

Psychological well-being over time among informal caregivers caring for persons with dementia living at home

Objectives: To investigate informal caregivers’ psychological well-being and predicted increase in psychological well-being, when caring for persons with dementia (PwDs) living at home, related to caregiver, PwD and formal care (FC) factors.

Method: A cohort study at baseline and 3 months’ follow-up in eight European countries. Caregivers included (n = 1223) were caring for PwDs aged ≥ 65 years at home. Data on caregivers, PwDs and FC were collected using standardized instruments. Regression analysis of factors associated with caregiver psychological well-being at baseline and 3 months later was performed.

Results: Factors associated with caregiver psychological well-being at baseline were positive experience of caregiving, low caregiver burden, high quality of life (QoL) for caregivers, male gender of PwD, high QoL of PwD, few neuropsychiatric symptoms and depressive symptoms for the PwD. At follow-up, caregivers with increased psychological well-being experienced of quality of care (QoC) higher and were more often using dementia specific service. Predicting factors for caregivers’ increased psychological well-being were less caregiver burden, positive experience of caregiving, less supervision of the PwD and higher caregiver QoL, if PwD were male, had higher QoL and less neuropsychiatric symptoms. Furthermore, higher QoC predicted increased caregivers’ psychological well-being.

Conclusion: Informal caregiving for PwDs living at home is a complex task. Our study shows that caregivers’ psychological well-being was associated with, among other things, less caregiver burden and higher QoL. Professionals should be aware of PwD neuropsychiatric symptoms that might affect caregivers’ psychological well-being, and provide proper care and treatment for caregivers and PwDs.     

A longitudinal view of factors that influence the emotional well-being of family caregivers to individuals with heart failure

Objectives: Caring for community-residing patients with heart failure can affect caregivers’ emotional wellbeing. However, few studies have examined caregivers’ well-being longitudinally, or identified factors associated with positive and negative outcomes. The objective of this longitudinal cohort study was to examine changes in caregivers’ well-being over time, and to identify patient and caregiver factors associated with positive and negative outcomes.

Method: Fifty caregiver/heart failure patient dyads were recruited from an acute care facility and followed in the community. All participants completed surveys at hospital admission and 3, 6 and 12 months later. Caregivers completed assessments of depression symptoms and positive affect and standardized measures to capture assistance provided, mastery, personal gain, social support, participation restriction, and patients’ behavioral and psychological symptoms. From patients, we collected demographic characteristics and health-related quality of life. Individual Growth Curve modelling was used to analyze the data.

Results: Caregivers’ negative and positive emotions remained stable over time. Depression symptoms were associated with higher participation restriction in caregivers. Positive affect was associated with more personal gain and more social support. Patients’ health-related quality of life and their behavioral and psychological symptoms were not significantly associated with caregivers’ emotional outcomes.

Conclusion: Interventions should be offered based on caregivers’ needs rather than patients’ health outcomes, and should focus on fostering caregivers’ feelings of personal gain, assisting them with securing social support, and engaging in valued activities.     

Psychometric properties of the Valued Living Questionnaire Adapted to Dementia Caregiving

Objectives: Caring for a relative with dementia is associated with physical and emotional health problems in caregivers. There are no studies analysing the role of personal values in the caregiver stress process.

This study aims to analyse the psychometric properties of the Valued Living Questionnaire Adapted to Caregiving (VLQAC), and to explore the relationship between personal values and stressors, coping strategies and caregiver distress.

Method: A total of 253 individual interviews with caregivers of relatives with dementia were conducted, and the following variables were assessed: personal values, stressors, cognitive fusion, emotional acceptance, depression, anxiety, and satisfaction with life. An exploratory factor analysis and hierarchical regression analyses were carried out.

Results: Two factors were obtained, Commitment to Own Values and Commitment to Family Values which explain 43.42% of variance, with reliability coefficients (Cronbach's alpha) of .76 and .61, respectively. Personal values had a significant effect on emotional distress (depression and anxiety) and satisfaction with life, even when controlling for socio-demographic variables, stressors and coping strategies.

Conclusion: Results suggest that the personal values construct of dementia caregivers is two-dimensional. The personal values of the caregivers play an important role in accounting for distress and satisfaction with life in this population.     

The relationship between family functioning and caregiving appraisal of dementia family caregivers: caregiving self-efficacy as a mediator

Objectives: The aim of this study was to explore caregiving self-efficacy as a mediator for the association between family functioning and caregiving appraisal of dementia family caregivers in Taiwan.

Method: This study adopted a cross-sectional correlational design. Purposive sampling was used to recruit 115 dyads of dementia patients and family caregivers from the outpatient neurological clinics of two hospitals in northern Taiwan. Data were gathered through interviews with a structured questionnaire, which included demographic characteristics for caregivers and patients, family functioning, caregiving self-efficacy, as well as positive and negative aspects of caregiving appraisal.

Results: Family functioning, patients' activities of daily living score, Neuropsychiatric Inventory caregiver distress, and three domains of self-efficacy were significantly associated with caregiver burden. Hierarchical multiple regression analyses indicated that self-efficacy for obtaining respite (SE-OR) significantly explained 20.5% of the variance in caregiver esteem. Caregiver perceived worsened health status, family functioning, and SE-OR significantly explained 59% of the variance in caregiver burden. The mediation test only supported the partially mediating role of SE-OR on the relationship between family functioning and caregiver burden, while the mediating effect of self-efficacy for responding to disruptive behaviours and controlling upsetting thoughts were insignificant.

Conclusion: Our findings provided preliminary evidence for health professionals recommending that future studies should assess the family dynamic and health problems of caregivers, and develop appropriate family-centred interventions that focus on strengthening interfamily support and respite services to alleviate caregiver burden.     

Predictors of psychological distress in caregivers of older persons with wet age-related macular degeneration

Objectives: Several studies have investigated the biopsychosocial impacts of age-related macular degeneration (AMD) in regards to the older patient, little is known about the impacts associated with caring for individuals with AMD. We aimed to determine the predictors of subjective caregiver distress and other negative outcomes associated with caring for someone with advanced AMD.

Methods: Cross-sectional, self-complete survey involving 500 caregivers of persons with advanced AMD. Respondents were identified from the Macular Disease Foundation of Australia client database. Logistic regression tested the independent effects of care recipient and caregiver characteristics on study outcomes, including: caregiver psychological well-being, participation in recreational/social activities and retirement plans.

Results: Around one third of caregivers self-reported a high level of care recipient dependence. Over one in two caregivers reported a negative state of mind. Comorbid chronic illnesses in the care recipient were associated with the caregiver reporting psychological distress, multivariable-adjusted odds ratio, OR, 1.45 (95% confidence intervals, CI, 1.14–1.86). If the care recipient was highly dependent on the caregiver, there was 99% greater likelihood of caregiver distress, OR 1.99 (95% CI 1.01–3.93). Comorbid chronic conditions in the care recipient was associated with 49% and 31% higher odds of the caregiver reporting disruption to other areas of their life and retirement plans related to the caregiving experience, respectively.

Conclusions: A high prevalence of caregiver distress related to caring for persons with advanced AMD was observed. Level of dependence on the caregiver and presence of comorbid chronic illnesses were independent predictors of the caregiver experiencing psychological distress.     

The relationship between self-efficacy and positive aspects of caregiving in Alzheimer's disease caregivers

Objectives: Positive aspects of the caregiving experience may buffer caregivers from the many negative psychological and physical consequences of caregiving. Understanding what factors relate to the recognition of positive aspects of caregiving is important for the enhancement of caregiver well-being. Self-efficacy is a potentially modifiable psychological construct that has been associated with positive thinking, improved control of negative affect, and enhanced motivation.

Methods: This study examined the relationship between positive aspects of caregiving and self-efficacy among 57 family members caring for a loved one with Alzheimer's disease. Participant data was gathered through individual interviews conducted as a part of a larger randomized controlled trial of a caregiver intervention.

Results: We found that self-efficacy accounted for a significant percentage of the variance in positive aspects of caregiving after controlling for other factors commonly associated with positive aspects of caregiving including caregiver demographics, care recipient neuropsychiatric symptoms, and caregiver depression.

Conclusions: Our results suggest that high self-efficacy relates to caregivers’ perception of positive aspects of the caregiving experience.     

Fidelity and acceptability of an adaptive intervention for caregivers: An exploratory study

Objective: There has been growing interest in providing tailored or adaptive interventions to family caregivers as a way of addressing their heterogeneity of risk factors and other needs. A particular challenge in an adaptive study is to implement the individualized intervention protocol as planned (program fidelity). This study explores the fidelity of implementation of an adaptive intervention for family caregivers of persons with dementia and its acceptability to caregivers.

Method: Using a sample of 35 caregivers of person with dementia who participated in a program development study, we gathered information on acceptability and fidelity of the program from multiple sources, including caregiver and counselor reports and ratings of recordings of sessions.

Results: Findings show that caregivers have high levels of acceptance of the intervention plan and high ratings of satisfaction with the program. Ratings of satisfaction and counselor competence were not associated with the amount of treatment provided. Ratings by counselors and independent raters found good fidelity for two of the three program domains.

Discussion: The results demonstrate that trained counselors can follow a tailored intervention plan and that caregivers’ experience of the program did not differ depending on how much intervention was provided. A next step is to determine how an adaptive protocol would affect caregiver outcomes.     

The long-term effect of group living homes versus regular nursing homes for people with dementia on psychological distress of informal caregivers

Objective: In this follow-up study, the long-term influence of group living homes (GLHs) on informal caregiver distress was compared with modern yet regular nursing homes (NHs).

Method: Informal caregivers of GLH (N?=?37) and NH residents (N?=?49) were studied at the time of admission, 6 months thereafter, and approximately 24 months after admission. Repeated measures of ANOVA were performed to study group-by-time effects on psychopathology, role overload, and feelings of competence.

Result: All outcomes of psychological distress in GLH caregivers showed significantly greater decline compared with NH caregivers during the first six months after admission. The course of psychological distress stabilized in both caregiver groups after six months.

Conclusion: GLHs may have played a role in reducing caregiver burden during the first six months after the nursing home admission of the care recipient. The stabilization of caregivers’ psychological distress between T1 and T2 may indicate that there is no further room for improvement in the GLH and NH groups after six months. The implication would be that both GLHs and NHs succeeded in keeping caregivers’ distress relatively low over the long term. More knowledge is needed on whether and how caregivers’ psychological distress after institutionalization of the care recipient can be reduced to a greater extent.     

The effects of caregiver emotional stress on the depressive symptomatology of the care recipient

Objectives: Depression is a leading mental health issue affecting elderly individuals worldwide. Previous research widely neglects caregiver emotional stress as a probable contributing factor of depression in the elderly. This study investigated caregiver emotional stress as a chronic life stressor of an elderly care recipient using the life stress paradigm as the theoretical foundation.

Methods: The relationships between caregiver emotional stress and care receiver depressive symptoms, as well as other social and psychological mediation factors, were investigated using the 2004 wave of the National Long-Term Care Study (NLTCS). The NLTCS is a nationally representative longitudinal study used to identify frail and disabled elderly Medicare recipients living in the United States. The analytic sample of this study included 1340 caregiver–care receiver dyads who were asked a series of questions concerning their mental health (i.e. emotional stress and depressive symptoms), as well as the availability of social and psychological resources.

Results: Overall, the results showed that high levels of emotional stress reported by the caregiver were associated with a higher likelihood of the disabled care receiver reporting depressive symptoms.

Conclusion: The findings of this investigation point to the importance of studying caregivers and care receivers as dyads as the stress associated with the caregiving role affects each member.     

Caregiver forgiveness is associated with less burden and potentially harmful Behaviors

Objectives: This study investigated whether caregiver forgiveness of care recipient's (CR's) upsetting behaviors is associated with less burden and potentially harmful behaviors (PHB) by the caregiver.

Method: Seventy-six family caregivers of persons with dementia were recruited by means of convenience sampling through two local dementia service centers in Hong Kong. Caregivers were asked to complete an anonymous questionnaire that assessed CR behavior problems and caregiver burden, PHB and forgiveness.

Results: Results showed that forgiveness partially mediated the associations between CR disruptive behaviors and caregiver burden, and between CR depression and caregiver burden. At the same time, burden partially mediated the relationship between forgiveness and PHB.

Conclusion: The associations between certain behavioral problems and burden were mediated by caregiver forgiveness. Forgiveness also predicted harmful behaviors, both directly and indirectly through burden. Future research should investigate the basis of forgiveness in dementia caregivers and whether forgiveness may constitute another dimension in caregiver interventions.     

Gender differences in sexual behaviors of AD patients and their relationship to spousal caregiver well-being

Objectives: Little is known about gender differences in sexuality among community-dwelling heterosexual couples in which one partner has Alzheimer's disease (AD). Few studies have examined gender differences in specific sexual behaviors or their associations with caregiver well-being. This study evaluated the impact of gender differences on intimacy and sexual satisfaction in marital relationships in which one partner has AD.

Method: Baseline measures were collected from 162 AD patients and their partners enrolled in a multi-site study between 2001 and 2009 to evaluate gender differences in measures of intimacy, caregiver well-being, and patient sexual behaviors.

Results: While over 70% of all patients initiated physically intimate activities (i.e., kissing, hugging, and intercourse), most did not initiate intercourse specifically. Female caregivers reported higher levels of stress and depressive symptoms than male caregivers (p?r?=??0.29, p?p's?

Conclusion: The majority of couples dealing with AD reported engaging in intimacy, suggesting its importance in the relationship. Female caregivers who reported less sexual satisfaction reported more frequent stress and depressive symptoms. Caregiver gender, satisfaction with intimacy, and the AD patient's level of cognitive functioning significantly contributed to caregiver well-being. Gender-specific therapies to address patient sexual difficulties and caregiver well-being could potentially maintain or improve the marital relationship.     

Stress processes in caring for an end-of-life family member: Application of a theoretical model

Objectives: Family caregivers play a vital role in maintaining the lives of individuals with advanced illness living in the community. However, the responsibility of caregiving for an end-of-life family member can have profound consequences on the psychological, physical and financial well-being of the caregiver. While the literature has identified caregiver stress or strain as a complex process with multiple contributing factors, few comprehensive studies exist. This study examined a wide range of theory-driven variables contributing to family caregiver stress.

Method: Data variables from interviews with primary family caregivers were mapped onto the factors within the Stress Process Model theoretical framework. A hierarchical multiple linear regression analysis was used to determine the strongest predictors of caregiver strain as measured by a validated composite index, the Caregiver Strain Index.

Results: The study included 132 family caregivers across south-central/western Ontario, Canada. About half of these caregivers experienced high strain, the extent of which was predicted by lower perceived program accessibility, lower functional social support, greater weekly amount of time caregivers committed to the care recipient, younger caregiver age and poorer caregiver self-perceived health.

Conclusion: This study examined the influence of a multitude of factors in the Stress Process Model on family caregiver strain, finding stress to be a multidimensional construct. Perceived program accessibility was the strongest predictor of caregiver strain, more so than intensity of care, highlighting the importance of the availability of community resources to support the family caregiving role.     

Acculturation level and caregiver outcomes from a randomized intervention trial to enhance caregivers' health: evidence from REACH II

Objective: Latinos comprise a growing segment of the caregiver population and vary widely in acculturation, yet little is known regarding how acculturation might affect caregiver stress or intervention outcomes. This study examined the relationship between acculturation and burden, bother, and depression in Latino dementia caregivers at baseline and following an intervention.

Methods: This was a secondary data analysis of 211 Latino caregivers of older adults with dementia from Resources for Enhancing Alzheimer's Caregiver Health (REACH) II, a multisite randomized trial of caregiver interventions. Baseline and follow-up data were used to run mixed-effects models examining the main and moderating effect of acculturation on caregiver stress.

Results: No significant main effect of acculturation was found for any of the outcome measures, controlling for demographic covariates. Acculturation moderated the effect of the intervention on caregiver burden: those who were more acculturated benefited more from the intervention.

Conclusion: Differential acculturation for Latino caregivers was not directly associated with caregiver burden, bother, or depression, but was associated with reducing burden from the intervention. Future research should explore by what mechanism acculturation influences caregiver burden following an intervention.     

Ethnicity,familism and willingness to care: Important influences on caregiver mood?

Objective: Few studies have to date examined the effects of ethnicity on caregiver motivations, coping responses and mood. This theoretically informed study uses the socio-cultural model of stress and coping to explore these relationships amongst a White-British and British South-Asian caregiver sample.

Method: A total of 235 primary family caregivers were recruited for a cross-sectional questionnaire survey; of which 162 were White-British and 73 were British South-Asian.

Results : British South-Asian caregivers differed from White-British caregivers on several variables within the stress-coping framework. British South-Asian caregivers were younger, had significantly higher levels of familism, used significantly more behavioural disengagement and religious coping and reported having significantly less support than White-British caregivers. White-British caregivers were more likely to make use of substances and humour as coping methods, and also in these caregivers, familism was significantly related to caregiver depression. Whilst levels of willingness to care did not differ between the two caregiver groups, opposing relationships were seen in the association between willingness to care and caregiver anxiety. Regression analyses found that self-blame explained a significant proportion of variance in South-Asian anxiety and depression, whereas depression amongst White-British caregivers was associated with high use of substances, low use of humour and low mean satisfaction with support.

Conclusion: These findings offer support to the socio-cultural model of stress and coping in that coping is associated with two outcomes (anxiety and depression), but motivational factors are also highlighted which have additional implications for the development of culturally specific interventions aimed at reducing caregiver distress.     

Caregiver burden assessed in dementia care networks in Germany: findings from the DemNet-D study baseline

Objectives: This paper aimed to describe the burden experienced by informal caregivers supporting a person with dementia (PwD) who lives at home and utilizes a dementia care network (DCN), to investigate the factors that are associated with caregiver burden, and to identify possible differences in caregiver burden among different types of DCNs.

Method: This study was part of a multi-center, interdisciplinary evaluation of DCNs in Germany (DemNet-D). Cross-sectional data were collected in face-to-face interviews with people with dementia (PwDs) and their caregivers, and 13 DCNs were represented. Standardized questionnaires were used to assess caregiver burden, challenging PwD behaviors, functional competence and caregiver health status. Based on qualitative data, four DCN governance types were used in a multivariate analysis of burden categories.

Results: There were 560 PwD-caregiver dyads enrolled in the study. Informal caregivers (n = 536) reported a low-to-moderate burden associated with PwD characteristics (instrumental activities of daily living, challenging behaviors) and caregiver characteristics (gender) as well as the relationship between the caregivers and PwDs. Women felt more burdened but also showed higher levels of personal development. No differences were observed among the different DCN governance types.

Conclusions: DCNs might contribute toward moderate to low caregiver burden. Indicators of positive caregiving aspects can be used by DCNs to advance support structures for informal caregivers drawing upon interventions already established for other community settings. Particular interest should be paid to female and spousal caregivers who might be in in need of greater and/or different kinds of support.     

Caregiver burden mediates between caregiver's mental health condition and elder's behavioral problems among Japanese family caregivers

Objectives: In Japan, the prevalence of depression has been reported to occur among 1 in 4 family caregivers. The purpose of this study was to investigate the self-rated burden associated with mental health conditions among caregivers.

Methods: We studied 95 caregivers aged 38–87 years in a cross-sectional study. The General Health Questionnaire (GHQ-12) score of 4 or more was defined as poor mental health.

Results: The proportion of caregivers with poor mental health was 24%. Caregivers with a high GHQ-12 score had the number of caregiver burdens increased by 2.5-fold compared to those with a low GHQ-12 score (p = 0.001). The proportion of caregivers with a high GHQ-12 score was significantly higher with an increasing number of behavioral problems among care recipients (p = 0.003). A mediational model was used to identify the underlying mechanism of the relationship between the number of behavioral problems and poor mental health in caregivers. Consequently, we found that mental health conditions in caregivers were associated with both the number of caregiver burdens and behavioral problems among care recipients.

Conclusions: It is vital to provide support not only to the caregivers but also to their elderly relatives, paying particular attention to early identification of poor mental health in caregivers so as to administer effective interventions, and to offer useful advice concerning how to deal with behavioral problems.