Caregiver burden, mental health, quality of life and self-efficacy of family caregivers of persons with dementia in Malaysia: baseline results of a psychoeducational intervention study.

BACKGROUND: The majority of persons with dementia (PWD) are mainly cared for by their family members in the home. Evidence is however scarce on family caregivers' psychosocial burden and quality of life in Asian countries including Malaysia. This study describes the baseline data of a telephone-delivered psychoeducational intervention study and examines the determinants of outcome measures (caregiver burden, depressive and anxiety symptoms, quality of life and caregiving self-efficacy) among Malaysian family caregivers to PWD. METHODS: This was a cross-sectional study originated from the baseline survey of a randomized control trial of 121 family caregivers recruited from lists of PWD who were registered at memory and psychiatry clinics in three tertiary care hospitals in Malaysia. The participants were assessed for caregiver burden by the Zarit Burden Interview, depressive and anxiety symptoms by the Hospital Anxiety and Depression Scale, quality of life by the Control, Autonomy, Self-Realization, and Pleasure Scale, and caregiving self-efficacy by the Revised Scale for Caregiving Self-Efficacy. RESULTS: Prevalence of caregiver burden was 69.4%, depressive symptoms 32.2% and anxiety symptoms 32.2%. Family caregivers to PWD having perceived peer support e.g., social/family/friend/significant other supports were less likely to report caregiver burden, depressive and anxiety symptoms, and more likely to report higher levels of quality of life and caregiving self-efficacy. Being married and PWD's ability to self-care were associated with lesser likelihood of experiencing caregiver burden, depressive and anxiety symptoms. The other determinants of greater probability of reporting better quality of life were caregivers' employment and having Islamic faith. Marital status (married), PWD's ability to self-care, spousal relationship with PWD and shared caregiving process were associated with higher likelihood of reporting caregiving self-efficacy. CONCLUSION: Caregiver burden, depressive and anxiety symptoms are prevalent in family caregivers to PWD in Malaysia. Social support and caregiving related factors influence family caregivers' quality of life and caregiving self-efficacy. Implementing psychoeducational intervention and support in the psychiatry and memory clinics may help improve the psychosocial burden, quality of life and caregiving self-efficacy in family caregivers of PWD. TRIAL REGISTRATION: ISRCTN14565552 (retrospectively registered).

Caregiving self-efficacy and pain assessment by family caregivers of people living with dementia.

Like other older adults, people living with dementia (PLWD) experience pain, and the task of pain assessment often falls to family caregivers. In this study, we surveyed family caregivers of PLWD to determine the frequency with which they use different elements of pain assessment. We also determined correlations of family caregivers' characteristics (caregiving self-efficacy, relationship duration and type, mood, education level, and health literacy) with their use of the elements of pain assessment. Participants reported frequent use of many pain assessment elements. Statistically significant correlations were found between caregiving self-efficacy for obtaining respite and asking others about noticed behavior change (rho=.0.41, p=.007); and for responding to disruptive patient behaviors for multiple pain assessment elements including observing pain behaviors (rho=0.49, p<.001), asking others about noticed behavior change (rho=0.54, p<.001) and rechecking (rho=0.56, p<.001). Continued efforts are needed to describe pain assessments by family caregivers of PLWD.

Factors associated with caregiving self-efficacy among primary informal caregivers of persons with dementia in Singapore.

BACKGROUND: Informal caregivers of persons with dementia (PWD) are often associated with negative health outcomes. Self-efficacy in dementia caregiving has been reported to have protective effects on caregiver's health. This study aims to examine the factors associated with the domains of caregiving self-efficacy among informal caregivers in Singapore, a country with a rapidly aging population and a 10% prevalence of dementia among older adults. METHODS: Two hundred eighty-two informal caregivers were recruited and data including participant's caregiving self-efficacy, sociodemographic information, perceived social support, positive aspects of caregiving, knowledge of dementia, as well as behavioral and memory problems of care recipients were collected. A confirmatory factor analysis (CFA) was performed for the 3-factor model of the Revised Scale for Caregiving Self-Efficacy (RSCSE), and multiple linear regressions were conducted using the RSCSE subscales as dependent variables. RESULTS: Our CFA found that the RSCSE 3-factor model proposed by the original scale developer was an acceptable fit among informal caregivers in Singapore. Having established that the 3-factor model of the RSCSE was compatible among our sample, a series of multiple regressions were conducted using each of the factors as a dependent variable. Regressions revealed several factors that were significantly associated with caregiving self-efficacy. Importantly, outlook on life was positively associated to all 3 domains of the RSCSE, while social support was positively associated with self-efficacy in obtaining respite and controlling upsetting thoughts. CONCLUSION: The 3-factor model of the RSCSE was found to be an appropriate fit for our sample. Findings from this study elucidated important novel insights into the factors that influences caregiving self-efficacy amongst informal caregivers in Singapore. Crucially, caregivers' outlook on life and social support should be improved in order to enhance their caregiving self-efficacy.

Impacts of a multicomponent intervention programme on neuropsychiatric symptoms in people with dementia and psychological health of caregivers: A feasibility pilot study.

OBJECTIVES: The objectives of this study are to explore the feasibility of a multicomponent intervention programme and to evaluate its impacts on behavioural and psychological symptoms of dementia (BPSD) and psychological health of caregivers. METHODS: Fifty-six community-dwelling people with dementia (PWD) and knee osteoarthritis (OA) and their caregivers were recruited and randomized into the intervention group (IG) or comparison group (CG). Each participant in both groups received an individual physiotherapy session (personalized home exercises and care education) and underwent 8 weeks of a 1-hour-structured group exercise session weekly at a day care centre. They were instructed to follow the prescribed home exercise. The IG received a multicomponent programme, combining knee OA-specific therapeutic exercise with self-management support, while the CG attended the routine group exercise programme. The attendance rate and reasons for non-attendance were recorded for evaluating the feasibility. The Chinese versions of the Revised Scale for Caregiving Self-Efficacy (RSCSE) and the Neuropsychiatric Inventory Questionnaire (NPI-Q) were measured at the baseline and postintervention. RESULTS: Fifty-four dyads completed the programme with high attendance rate (94.4%). Compared with the CG, caregivers in the IG significantly improved in three domains of RSCSE scores (P ≤ .005) and caregivers' distress (P = .004) after the intervention. However, no effects were observed in terms of BPSD severity in PWD. No adverse events or falls were reported. CONCLUSION: This multicomponent programme is feasible and safe for dementia caregivers and older people with mild-to-moderate dementia and knee OA. The programme has beneficial effects on caregiving self-efficacy and distress of dementia caregivers.

The relationship between caregiving self-efficacy and depressive symptoms in family caregivers of patients with Alzheimer disease: a longitudinal study.

BACKGROUND: Caregiving for a relative with dementia has been associated with negative consequences for mental health. Self-efficacy has been shown to correlate negatively with depression but the long-term association between caregiver burden, caregiver self-efficacy, and depressive symptoms, remains still largely unexplored. The aim of the present study was to evaluate whether different self-efficacy domains partially mediated the relationship between caregiving burden and depression. METHODS: A three-wave design was used, with initial assessment and follow-ups three months later and one year later. One hundred seventy caregivers of patients with AD responded to measures of caregiver burden, caregiving self-efficacy, and depressive symptoms. Data were analyzed by means of structural equation models. RESULTS: The tested model provided support for the guiding hypothesis. Burden at the time of the first assessment (T1) significantly influenced depression one year later and the relationship between burden at time one and depressive symptoms one year later was partially mediated by self-efficacy for controlling upsetting thoughts. CONCLUSIONS: The findings of the present study provide evidence that, along a considerable length of time, the effects of caregiver burden on depressive symptoms can be explained by the caregivers' efficacy beliefs in controlling upsetting thoughts related to the caregiving tasks. Interventions for caregivers of patients with AD may help them in tackling negative thoughts about the caregiving role.

Longitudinal study of parent caregiving self-efficacy and parent stress reactions with pediatric cancer treatment procedures.

BACKGROUND: Pain/distress during pediatric cancer treatments has substantial psychosocial consequences for children and families. We examined relationships between parents' caregiving self-efficacy, parents' affect in response to their children's cancer-related treatment procedures, and parents' symptoms of post-traumatic stress at follow-up. METHODS: Participants were 75 pediatric cancer patients and parents. On the day of each of three procedures (i.e., port-start, lumbar puncture, or bone marrow aspiration), parents rated their self-efficacy for six caregiving goals. Parents also self-reported their negative affect (i.e., state anxiety, negative mood, and distress) in response to each procedure. Three months after the last procedure, parents reported their level of post-traumatic stress symptoms (PTSS). RESULTS: Higher parent self-efficacy about keeping children calm before treatment and/or keeping children calm during the procedure was associated with lower state anxiety. Self-efficacy for keeping the child calm during procedures was significantly correlated with distress in parents at the time of procedures, and self-efficacy for keeping the child calm before procedures was significantly correlated with PTSS. All three negative affect measures significantly mediated the effects of parents' caregiving self-efficacy for both goals on parents' PTSS 3 months later. CONCLUSIONS: Parents' caregiving self-efficacy influences their immediate and longer-term distress reactions to their children's treatment procedures. These findings provide a more nuanced understanding of how parents' cognitions contribute to their ability to cope with their children's treatment and suggest the benefit of an intervention that targets parents' procedure-specific caregiver self-efficacy.

Caregiving Self-Efficacy of the Caregivers of Family Members with Oral Cancer-A Descriptive Study.

In Taiwan, oral cancer is the fourth most common cause of cancer death in men. The complications and side effects of oral cancer treatment pose a considerable challenge to family caregivers. The purpose of this study was to analyze the self-efficacy of the primary family caregivers of patients with oral cancer at home. A cross-sectional descriptive research design and convenience recruiting were adopted to facilitate sampling, and 107 patients with oral cancer and their primary family caregivers were recruited. The Caregiver Caregiving Self-Efficacy Scale-Oral Cancer was selected as the main instrument to be used. The primary family caregivers' mean overall self-efficacy score was 6.87 (SD = 1.65). Among all the dimensions, managing patient-related nutritional issues demonstrated the highest mean score (mean = 7.56, SD = 1.83), followed by exploring and making decisions about patient care (mean = 7.05, SD = 1.92), acquiring resources (mean = 6.89, SD = 1.80), and managing sudden and uncertain patient conditions (mean = 6.17, SD = 2.09). Our results may assist professional medical personnel to focus their educational strategies and caregiver self-efficacy enhancement strategies on the dimensions that scored relatively low.

Antecedents and Outcomes of Enrichment Among Working Family Caregivers of People With Dementia: A Longitudinal Analysis.

OBJECTIVES: Despite evidence of negative aspects of the work-caregiving interface (e.g., work-family conflict) among family caregivers of people with dementia (PWD), little is known about the positive aspects (e.g., enrichment). We examined antecedents and outcomes of family-to-work enrichment (FWE) and work-to-family enrichment (WFE) among working family caregivers of PWD. In terms of antecedents, we investigated whether factors that alleviated work-family conflict increased enrichment. METHOD: We conducted a 3-wave 6-month-interval longitudinal online survey of Japanese working family caregivers of PWD (N = 747). We examined the mediational effects of WFE and FWE on associations between participants' work resources (job control, supervisor support, co-worker support, and organizational support) and caregiving support and their well-being (psychological distress and quality of life). We also examined the moderating effect of caregiving self-efficacy on the relationships between caregiving support/caregiving demands and FWE. RESULTS: Our longitudinal analysis confirmed supervisor support had a positive effect on WFE. FWE had no significant longitudinal mediating effect on the association between caregiving support and well-being, and self-efficacy had no longitudinal moderating effect on FWE. DISCUSSION: Supervisor support is important for WFE, but greater enrichment does not necessarily improve family caregiver well-being. Caregiving experience (i.e., caregiving demands and caregiving support) has little effect on the work-caregiving interface. Policy makers should focus on supporting companies to create family-friendly work environments. More research is needed on factors that increase FWE and moderate the relationship between enrichment and working family caregivers' well-being.

Source of Social Support and Caregiving Self-Efficacy on Caregiver Burden and Patient's Quality of Life: A Path Analysis on Patients with Palliative Care Needs and Their Caregivers.

Few studies have explored the inter-relationships of sources of social support and caregiving self-efficacy with caregiver burden and patient's quality of life among patients with palliative care needs and their caregivers. This study tested the associations of two sources of social support (family and friends) and the mediating role of caregiving self-efficacy on caregiver burden and patient's quality of life. A convenience sample of 225 patient-caregiver dyads recruited between September 2016 and May 2017 from three hospitals in Hong Kong was included in the current analysis. Results showed that the final model provided a satisfactory fit (SRMR = 0.070, R-RMSEA = 0.055 and R-CFI = 0.926) with the data, as good as the hypothesized model did (p = 0.326). Significant associations were detected. Family support had a significant negative indirect effect on caregiver burden and a significant positive indirect effect on patient's quality of life through caregiving self-efficacy, whereas friend support had a significant positive direct effect on caregiver burden but a minimal effect, if any, on patient's quality of life. These findings emphasized (1) the importance of caregiving self-efficacy in improving caregiver burden and patient's quality of life and that (2) sources of social support may be an important dimension moderating the associations of caregiving self-efficacy with caregiver burden and patient's quality of life.