Positive aspects of caregiving among informal caregivers of persons with dementia in the Asian context: a qualitative study.

BACKGROUND: Positive aspects of caregiving are important coping resources for informal caregivers of persons with dementia (PWD). However, existing studies mostly focused on caregivers from western societies and less attention was paid to the potential cultural differences. This study aims to explore positive aspects of caregiving in the Asian context. METHODS: A qualitative methodology with semi-structured interviews was adopted. A total of 29 informal caregivers of PWD in Singapore were interviewed from Apr 2019 to Dec 2020. All the interviews were audio-recorded and transcribed verbatim for the analysis. Inductive thematic analysis was conducted. RESULTS: The results revealed a total of three major themes with 11 sub-themes including: 1) positive aspects within self (i.e., better understanding of dementia and caregiving, personal growth, role satisfaction, and improved awareness of self-care); 2) positive aspects between caregiver and PWD (i.e., chance to demonstrate filial piety towards PWD, happiness and positive attitudes of PWD, positive interactions with PWD, and closer relationships with PWD); and 3) positive aspects between caregiver and others (i.e., empathy towards other caregivers, befriending peers, and sharing dementia and caregiving knowledge with others). DISCUSSION: Findings from this study improved our understanding on positive aspects of caregiving among informal caregivers of PWD in the Asian context. In addition to similar themes across cultures such as personal growth, our study identified a few unique themes like improved awareness of self-care and chances to demonstrate filial piety. For future studies targeting Asian caregivers, it is necessary to include these cultural-specific positive aspects of caregiving.

The impact of having foreign domestic workers on informal caregivers of persons with dementia - findings from a multi-method research in Singapore.

BACKGROUND: Informal caregivers of persons with dementia (PWDs) sometimes engage foreign domestic workers (FDWs) to support their caregiving journey. However, there has not been much research to establish if this is really beneficial. The current study aims to investigate whether engaging FDWs specifically for caregiving of PWDs truly moderates caregiver stress and to explore caregivers' experiences of engaging FDWs. METHODS: A multi-method study design with a quantitative and qualitative sub-study was adopted. For the quantitative sub-study, 282 informal caregivers of PWDs were recruited. Propensity score matching analysis was used. For the qualitative sub-study, 15 informal caregivers with FDWs were interviewed. Inductive thematic analysis was conducted. RESULTS: The quantitative sub-study confirmed that engaging FDWs did moderate the depressive symptoms of informal dementia caregivers (marginal effect = -3.35, p = 0.0497). However, such support did not affect their caregiving burden, self-efficacy, and perceived positive aspects of caregiving. The qualitative sub-study suggested that engaging FDWs is an ambivalent experience, which entails both support and challenges. CONCLUSIONS: The current study confirmed previous research findings, that engaging FDWs moderated depressive symptoms among caregivers of PWDs, and it could be through their physical support such as in daily caregiving activities. Policy-makers may consider providing more subsidies to caregivers caring for PWDs with mobility issues to hire FDWs. They may also consider providing training to FDWs on dementia caregiving skills and improving the intake of such training as this might be helpful for both FDWs and caregivers during this journey.

Combining a variable-centered and a person-centered analytical approach to caregiving burden - a holistic approach.

BACKGROUND: Informal caregivers of persons with dementia often experience elevated levels of caregiving burden. However, existing studies tend to use a variable-centered approach to explore it. This study aims to understand the caregiving burden of informal caregivers of persons with dementia in Singapore through a combination of variable-centered and person-centered analytical approaches, and explore the correlates of identified factors and latent classes of caregiving burden. METHODS: Zarit Burden Interview was used to gauge the caregiving burden of 282 primary informal caregivers of persons with dementia recruited through convenience sampling in Singapore. Factor analysis and latent class analysis were conducted to identify the latent factors and the latent classes of Zarit Burden Interview, followed by multiple linear regression and multinomial logistic regression to explore their significant correlates. RESULTS: The analyses suggested a 17-item 3-factor structure for Zarit burden interview and three mutually exclusive caregiving burden classes. Regression analyses found that caregiving related variables especially care recipients' memory and behaviour problems were correlated with both the factors and latent classes of caregiving burden. CONCLUSIONS: The combination of these two approaches suggests that caregivers experiencing higher burden on one domain are likely to experience higher burden on the other two domains. This further supports the point that more attention should be given to caregivers who experience an overall high burden. Future research could explore the generalizability of our findings among caregivers elsewhere and explore the type of support needed by caregivers, especially those experiencing high burden.

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.

Dementia knowledge and its demographic correlates amongst informal dementia caregivers in Singapore.

Objectives: The Dementia Knowledge Assessment Scale (DKAS) is a validated assessment tool to measure dementia knowledge. However, the factor structure of the DKAS has yet to be validated in Singapore. This study aims to investigate the DKAS factor structure amongst a sample of informal dementia caregivers in Singapore, as well as their sociodemographic correlates.Methods: A total of 282 participants were evaluated on their knowledge of dementia by an interviewer administering the DKAS. Confirmatory factor analysis (CFA) of factor models proposed by previous study yielded poor fit for our sample. Thus, an exploratory factor analysis (EFA) was conducted. Multiple linear regression was then performed to examine the sociodemographic correlates of DKAS factors.Results: EFA revealed a 23-item 3-factor model - 'misconceptions about dementia' (MD), 'caregiving considerations towards dementia' (CD) and 'dementia symptoms' (DS). Being a male caregiver and having lower educational levels were associated with poorer scores on MD and CD.Conclusion: A 3-factor model of the DKAS was found to be more appropriate with the sample in this study. Findings from this study suggests the need for more dementia literacy intervention for caregivers of dementia patients in Singapore, especially for male caregivers and those of lower education levels.

Resilience and burden in caregivers of older adults: moderating and mediating effects of perceived social support.

BACKGROUND: The burden of caring for an older adult can be a form of stress and influence caregivers' daily lives and health. Previous studies have reported that resilience and social support play an important role in reducing physical and psychological burden in caregivers. Thus, the present study aimed to examine whether perceived social support served as a possible protective factor of burden among caregivers of older adults in Singapore using moderation and mediation effects' models. METHODS: We conducted a cross-sectional study with 285 caregivers providing care to older adults aged 60 years and above who were diagnosed with physical and/or mental illness in Singapore. The Connor-Davidson Resilience Scale (CD-RISC) was used to measure resilience and burden was measured by the Zarit Burden Interview (ZBI). The Multidimensional Scale of Perceived Social Support (MSPSS) was used to measure perceived social support. Hayes' PROCESS macro was used to test moderation and mediation effects of perceived social support in the relationship between resilience and burden after controlling for sociodemographic variables. Indirect effects were tested using bootstrapped confidence intervals (CI). RESULTS: The mean scores observed were CD-RISC: 70.8/100 (SD = 15.1), MSPSS: 62.2/84 (SD = 12.2), and ZBI: 23.2/88 (SD = 16.0) respectively. While perceived social support served as a full mediator between resilience and caregiver burden (ß = - 0.14, 95% CI -0.224 to - 0.072, p < 0.05), it did not show a significant moderating effect. CONCLUSIONS: Perceived social support mediates the association between resilience and caregiver burden among caregivers of older adults in Singapore. It is crucial for healthcare professionals, particularly those who interact and deliver services to assist caregivers, to promote and identify supportive family and friends' network that may help to address caregiver burden.

Facilitators and barriers of help-seeking for persons with dementia in Asia-findings from a qualitative study of informal caregivers.

Background and aim: The deterioration in cognition of persons with dementia (PWD) makes their caregivers key players in their help-seeking process. This study aimed to identify the facilitators and barriers of help-seeking for persons with dementia in Asia from the perspective of their informal caregivers. Methods: A qualitative methodology was adopted in the current study. Twenty-nine informal caregivers of PWD in Singapore were interviewed between April 2019 and December 2020. All interviews were audio-recorded and transcribed verbatim for the analysis. Results: The transcripts were analyzed using inductive thematic analysis. The results revealed four major themes with 12 sub-themes, including (1) Barriers to diagnosis-seeking (i.e., lack of knowledge and awareness of dementia, emotional denial, resistance from PWD, and delays in the healthcare system); (2) Facilitators of diagnosis-seeking (i.e., synergy between awareness of dementia and an active diagnosis-seeking intention and incidental diagnosis resulting from seeking treatment for comorbid conditions); (3) Barriers to treatment-seeking (i.e., challenges from PWD and disease, challenges faced by caregivers when seeking treatment for PWD, and challenges imposed by the COVID-19 pandemic); (4) Facilitators of treatment-seeking (i.e., caregivers' capabilities of handling PWD, cooperation/compliance from PWD, and an integrated care plan for PWD). Conclusion: The findings highlight the importance of raising public awareness, enabling health professionals to tailor psychosocial interventions better, and improving community support through dementia awareness and education.

Evaluating a mobile-based intervention to promote the mental health of informal dementia caregivers in Singapore: Study protocol for a pilot two-armed randomised controlled trial.

BACKGROUND: Informal caregivers of persons with dementia (PWD) often suffer adverse impacts on their mental health and require interventions for effective support. As they are often occupied with providing care, web-based interventions could be more convenient and efficient for them. However, there is currently a dearth of evidence-based mobile interventions to enhance the mental well-being of dementia caregivers locally, especially ones that are user-centered and culturally relevant. Hence, having designed an app based on feedback from local dementia caregivers, this study will evaluate the effectiveness of this mobile app in promoting the mental health of informal caregivers of PWD in Singapore. METHODS: A pilot two-armed randomised controlled trial will be conducted on 60 informal caregivers of PWD recruited via convenience and snowball sampling. Thirty participants will be assigned to the intervention group, while another 30 will be in a waiting-list control group. Questionnaires will be administered at baseline and one month after, with the primary outcome being the difference in the change of depressive symptoms among the two groups. STATISTICAL ANALYSIS: Primary analyses will follow the intention-to-treat principle and compare changes from baseline to the one-month follow-up time point relative to the control group. A repeated measures ANOVA will be conducted to examine differences between the groups over time. SIGNIFICANCE: To our knowledge, this is the first study in Singapore that seeks to promote the mental health of informal dementia caregivers through a mobile-based intervention. The findings can inform the development and evaluation of future evidence-based digital interventions for local informal caregivers of PWD to address the gap in availability of such resources for them. TRIAL REGISTRATION: ClinicalTrials.gov (NCT05551533). Registration date: September 22, 2022.

A modified transactional model of stress and coping on depressive symptoms among informal caregivers of persons with dementia.

Informal caregivers are crucial to the care of persons with dementia (PWD), but their role is often reported as challenging. This study aims to examine caregiver stress and depressive symptoms among informal caregivers of PWD using a modified transactional stress and coping model. Path analysis was conducted among a sample of informal caregivers of PWD in Singapore (n = 281) using information on functional dependence and memory and behavioral problems of PWD, and self-reported measurements on caregivers' knowledge of dementia, perceived positive aspects of caregiving, social support, coping patterns, caregiving self-efficacy, caregiving burden and depressive symptoms. The initial model reflecting our assumptions for the transactional stress and coping model showed a poor fit (model 1 - CFI = 0.858, TLI = 0.665, RMSEA = 0.118). Logical modifications were made until sufficient model fit was achieved (model 2 - CFI = 0.987, TLI = 0.955, RMSEA = 0.043). We then removed the insignificant paths in model 2 and obtained our final model (model 3 - CFI = 0.990, TLI = 0.974, RMSEA = 0.033). The final model supported our hypotheses, with some adjustments. This study advances our understanding of caregiver distress by modifying the transactional stress and coping model, including (1) the key role of caregiver self-efficacy in the primary appraisal process, (2) the dynamic assessment of coping resources across all stages of the model, and (3) the importance of coping patterns. Future studies could explore the generalizability of these findings.

Coping Patterns Among Primary Informal Dementia Caregivers in Singapore and Its Impact on Caregivers-Implications of a Latent Class Analysis.

BACKGROUND AND OBJECTIVES: Existing studies typically explore the factor structure of coping strategies among dementia caregivers. However, this approach overlooks the fact that caregivers often use different coping strategies simultaneously. This study aims to explore the coping patterns of primary informal dementia caregivers in Singapore, examine their significant correlates, and investigate whether different patterns would affect the depressive symptoms of caregivers. RESEARCH DESIGN AND METHODS: Two hundred eighty-one primary informal caregivers of persons with dementia (PWD) were assessed. Coping strategies were measured by the Brief Coping Orientation to Problem Experienced inventory. A latent class analysis was performed to explore caregivers' coping patterns, followed by logistic regressions to identify the significant correlates and the relationships between coping patterns and caregiver depression. RESULTS: The latent class analysis suggested a three-class solution that was featured by the frequency and variety of coping strategies used by caregivers-high coping (36.3%), medium coping (37.7%), and low coping (26.0%). Factors influencing the coping patterns of our sample were mainly related to caregivers' individual resources such as personal characteristics and caregiving stressors like PWD's problematic behaviors and caregiving burden. Compared to caregivers in the low coping group, those in the medium coping group had significantly higher risks of potential depression. DISCUSSION AND IMPLICATIONS: The current study confirmed that there are distinct coping patterns among primary informal dementia caregivers, and caregivers with the low coping pattern had fewer depressive symptoms. Future research is needed to explore if coping patterns from our sample are generalizable to dementia caregivers elsewhere.

Positive aspect of caregiving among primary informal dementia caregivers in Singapore.

BACKGROUND: The present study investigated the factor structure of positive aspects of caregiving (PAC) scale among primary informal caregivers providing care to persons with dementia (PWD) in Singapore. METHODS: 282 primary informal caregivers of PWD were recruited from the Institute of Mental Health, and Changi General Hospital and administered the 9-item PAC scale. A confirmatory factor analyses (CFA) was conducted to test the model fit of the 9-item PAC proposed by the scale developer and multiple linear regression was used to investigate the significant socio-demographic correlates. RESULTS: CFA showed that the 2-factor structure including 'Self-Affirmation' and 'Outlook on Life' had an acceptable model fit. After controlling for confounding variables, Malay caregivers were associated with higher scores on PAC and 'Self-Affirmation' compared to caregivers of other ethnicities. Caregivers with Secondary or below education level had higher PAC and 'Outlook on Life' scores. Caregivers who had received formal training scored higher in PAC, 'Self-Affirmation' and 'Outlook on Life'. DISCUSSION: The present study confirmed that the 2-factor structure of the 9-item PAC was suitable for informal caregivers of PWD in Singapore. The findings have important implications for locally available interventions to enhance caregiver's psychological well-being and reduce burden of care.

Staging dementia based on caregiver reported patient symptoms: Implications from a latent class analysis.

BACKGROUND: Tailoring interventions to the needs of caregivers is an important feature of successful caregiver support programs. To improve cost-effectiveness, group tailoring based on the stage of dementia could be a good alternative. However, existing staging strategies mostly depend on trained professionals. OBJECTIVE: This study aims to stage dementia based on caregiver reported symptoms of persons with dementia. METHODS: Latent class analysis was used. The classes derived were then mapped with disease duration to define the stages. Logistic regression with receiver operating characteristic curve was used to generate the optimal cut-offs. RESULTS: Latent class analysis suggested a 4-class solution, these four classes were named as early (25.9%), mild (25.2%), moderate (16.7%) and severe stage (32.3%). The stages based on the cut-offs generated achieved an overall accuracy of 90.8% compared to stages derived from latent class analysis. CONCLUSION: The current study confirmed that caregiver reported patient symptoms could be used to classify persons with dementia into different stages. The new staging strategy is a good complement of existing dementia clinical assessment tools in terms of better supporting informal caregivers.

A Prospective Longitudinal Study of Caregivers of Community Dwelling Persons with Severe Dementia (PISCES): Study Protocol.

Although many persons with severe dementia (PWSDs) are cared for at home by their family caregivers, few studies have assessed end of life (EOL) care experiences of PWSDs. We present the protocol for the PISCES study (Panel study Investigating Status of Cognitively impaired Elderly in Singapore) which aims to describe the clinical course, health care utilization, and expenditures for community-dwelling PWSDs; and perceived burden, coping, resilience, anticipatory and prolonged grief among their caregivers. This ongoing multi-center prospective longitudinal study is recruiting primary informal caregivers of 250 PWSDs from major restructured public hospitals, community hospitals, home care foundations, and hospices in Singapore. Caregivers are surveyed every four months for two years or until the PWSD passes away and then at eight weeks and six months post-death to assess the bereavement of the caregiver. Survey questionnaires included validated tools to assess PWSDs' quality of life, suffering, behaviors, functional status, resource utilization; and caregiver's satisfaction with care, awareness of prognosis, care preferences, resilience, coping, perceived burden, distress, positive aspects of caregiving, anticipatory grief, and bereavement adjustment. We also conduct qualitative in-depth interviews with a sub-sample of caregivers. The survey data is being linked with medical and billing records of PWSDs. The study has been approved by an ethics board. Results from the study will be disseminated through publications and presentations targeting researchers, policy makers and clinicians interested in understanding and improving EOL care for PWSDs and their caregivers.