Unpaid Family Caregivers Research Articles

Caring for Caregivers: National Case Management Week: October 13-10, 2024.

The population of individuals over the age of 60 is expected to double by 2050, resulting in nearly 2.1 billion people. Statistics show that unpaid family caregiving is on the rise and will likely go higher. A look at caregiver statistics is revealing. There are ways that institutions and case managers can support this growing population.

Exploration of family caregivers’ experiences on coping in dementia care in Ghana: a phenomenological study

BackgroundDementia is an important public health and geriatric concern for sub-Saharan African countries, including Ghana. Evidence shows that persons living with dementia are often supported and cared for by family caregivers in the community. In the execution of these services to the persons living with dementia, family caregivers are overwhelmed and experience heightened stress that results in serious repercussions. Therefore, the aim of this study was to explore family caregivers’ experiences on coping in dementia care in Ghana.MethodsAdopting a descriptive phenomenological design, individual face-to-face interviews were conducted among thirty unpaid family caregivers of persons living with dementia in Ghana. Semi-structured interview guides were used. The data analysis process followed Clarke and Braun’s framework analysis.ResultsSix themes were generated from the textual data. These themes were captioned as: (1) empathy and perspective-taking; (2) family support and cohesion; (3) coaxing and pampering of persons living with dementia; (4) humour and positive communication; (5) spiritual support; and (6) ethical/moral consideration in dementia caregiving.ConclusionWe conclude that unpaid family caregivers of persons living with dementia in Ghana adopt varied strategies to cope with the strains of caregiving. Healthcare facilities that provide services to persons living with dementia could incorporate caregiver preparatory training or education for family caregivers. This training should focus on briefing family caregivers about the potential strains that they are likely to encounter. Also, the training could focus on equipping family caregivers with the knowledge and skills to effectively communicate and care for the persons living with dementia using person-centered approaches. Key stakeholders such as the Ghana Health Service and Alzheimer’s Ghana must raise awareness about the dangers of caregivers’ violation of the autonomy and freedom of persons living with dementia as they navigate through the challenges of caregiving. Lastly, faith-based institutions need to be considered as key stakeholders in dementia interventions since they could play a critical role.

Burden levels and predictive factors among caregivers of hemodialysis patients: a cross-sectional study in Oman.

Caring for individuals with chronic kidney disease (CKD) is a highly demanding task that can adversely affect the physical and psychological well-being of caregivers. This study aimed to investigate the burden experienced by caregivers of patients undergoing hemodialysis (HD) in Oman and explore the factors associated with this burden, including demographic and medical characteristics. A descriptive cross-sectional was employed. Caregiver burden was assessed, and demographic and medical variables were examined among caregivers of HD patients. A total of 326 unpaid family caregivers completed the Zarit Burden Interview scale, demographics and some medical variables. Linear multiple regression analyses were conducted to identify factors linked to caregiver burden. Of the caregivers, 62.9% reported a minimal burden, 21.8% experienced mild-to-moderate burden, 8.6% faced moderate-to-severe burden, and 6.7% encountered a severe burden. The final multiple regression model demonstrated statistical significance compared to the constant (F = 8.68, p < 0.001), with eight predictors explaining 18% of the variance, and caregivers' satisfaction with health emerged as the only significant predictor. A substantial portion of caregivers reported minimal burden. These findings suggest the need for further in-depth investigations into factors contributing to this favourable outcome. Furthermore, caregivers' satisfaction with health was the only significant predictor of their burden. Healthcare providers need to give special attention to this point and conduct periodic assessments of the primary caregivers' health. Implementing improvements in the healthcare system based on these findings could enhance the overall caregiving experience for HD patients and their caregivers.

Informal caregiving for older adults on systemic treatment for hepatocellular carcinoma.

12059 Background: Hepatocellular carcinoma (HCC) disproportionately affects older adults who are often supported by informal or unpaid family caregivers (CGs). Despite rising incidence of advanced HCC worldwide, little is known about the experiences and unmet supportive needs of patients (pts) and their informal CGs, particularly in the context of contemporary first-line immunotherapy-based treatment. Methods: As part of two cross-sectional descriptive studies conducted in parallel at a single academic center, we interviewed non-dyadic older pts on systemic HCC treatment and family CGs and examined themes of informal caregiving. Eligible CGs were ≥18 years old and identified by pts; eligible pts were ≥60 years old and on systemic treatment for BCLC stage B or C HCC. CGs completed the Zarit Burden Interview (ZBI). Participants completed semi-structured interviews focused on pt and CG experiences and needs, which were transcribed and analyzed using an inductive approach by at least two investigators. Results: Transcripts (n=16) from 11/2021-11/2023 of interviews with CGs (n=8) and pts (n=8) were analyzed. CGs were 87.5% female. Their median ZBI score was 20/88, indicating little or no burden, although scores ranged from 2-64; higher scores indicate greater burden. Four themes emerged: CG tasks, sources of burden, sources of support, and views of palliative care. CG tasks included coordinating medical appointments and transport, attending appointments, advocating for pt interests, and helping with household chores. Two sources of burden most commonly identified were logistics of medical visits and supporting pts through physical and emotional symptoms. CGs recognized multiple sources of support, including spouses, family, friends, church groups, and therapists. Pts were 87.5% male, median aged 70, 25% Black, 50% non-Hispanic white, and 25% Hispanic. Their responses about caregiving, in contrast to the CGs interviewed, showed strong themes of independence. Representative quotes include, “I don’t need any help,” “I am independent..so far,” and “I live alone, I’ve got my own place, I do the best I can for myself.” Some shared that the support of CGs is more spiritual or emotional, “I feel stronger because you’re there,” which was needed mostly with new diagnoses or disease progression. Conclusions: Levels of burden varied among CG participants; pt participants felt independent for the most part while receiving their treatments, consistent with improved functional status and quality of life experienced by those receiving combination therapy. The task of juggling logistics for numerous medical visits between multiple subspecialties emerged as a major challenge. Strategies to optimize care coordination, including increased use of navigation for those with advanced HCC, may help pts and their CGs live better as they live longer on improved treatments.

Exploring the burden on family caregivers in providing care for their mentally ill relatives in the Upper East Region of Ghana.

Caring for the mentally ill involves numerous challenges, including financial difficulties, stigma, and psychosocial issues, among others. Unpaid family caregivers must endure these challenges as they continue their care for their relatives with mental illness. Despite these burdens and their concomitant effects on both the patients and their caregivers, there is no evidence of this burden in the Bolgatanga municipality. This study explored the burden on family caregivers providing care for mentally ill relatives in the Bolgatanga Municipality of the Upper East Region of Ghana. The study employed a phenomenological research design. Fifteen family caregivers were purposively sampled from two secondary-level health facilities. In-depth interviews were conducted, audio-recorded, and transcribed verbatim. NVivo 12 pro software was used for data analysis. Thematic analysis was conducted following Braun and Clarke's approach. The study identified three themes including social, physical, and psychological burdens. Under social burden, financial challenges and stigma were identified, weight loss was identified as a physical burden, and poor concentration as a psychological burden. These themes represent the challenges encountered by the family caregivers as they provided care for their mentally ill relatives. There is a need to provide support for family caregivers including respite, formation of support groups, and financial support to alleviate family caregivers of the burdens they endure. Additionally, it is imperative to integrate mental health services into the national health insurance scheme to alleviate the financial burden on family caregivers.

Factors associated with memory of informal caregivers: A scoping review protocol.

The ability to retain and remember information (memory) is essential to caregiving tasks. There is evidence that caregivers are at greater risk for experiencing deteriorations in cognitive status than non-caregivers, especially memory; however, we have a limited understanding of factors that are related to changes in caregiver memory. This scoping review intends to comprehensively map factors related to caregiver memory reported in the literature within the chronic caregiving context. Specific aims include (1) identifying factors related to caregiver memory; (2) examining how caregiver memory has been measured; and (3) describing changes in caregiver memory during their caregiving period. This review will be conducted following Arksey and O'Malley's framework and reported using the PRISMA guidelines for Scoping Reviews (PRISMA-ScR). Studies will be included if (1) the studies focus on home-based unpaid long term family caregiving; (2) study participants (patients), of any age, have one (or more) chronic illness or disability and receive care from a caregiver for 6 months or more; (3) caregivers are adults (> = 18 years of age). Any chronic disease or condition will be included. The search will encompass gray literature and peer-reviewed literature in MEDLINE (via Ovid), CINAHL Plus with Full Text (via EBSCOhost), Embase (via Elsevier), APA PsycINFO (via EBSCOhost), Sociology Source Ultimate (via EBSCOhost), and ProQuest Dissertations and Theses Global. Data extraction will include specific details about the participants, concept, context, study methods, and key caregiver-related findings. The Caregiver Health Model will provide a framework to categorize factors that impact caregivers' memory including caregiver health promotion activities, caregiver attitudes and beliefs, caregiver task, and caregiver needs. Factors that do not fall into the Caregiver Health Model domains will be organized by emerging themes.

Smartphone Use by Caregivers for Patients With Heart Failure During Hospitalization: An Investigation.

This study investigated the use of smartphones by family caregivers for hospitalized patients with chronic heart failure (CHF). In total, 120 patients and their unpaid family caregivers participated in this study. The caregivers were divided into two groups based on the perceived importance of smartphones in patient care. Both groups completed the General Demographic Information Survey, Problematic Mobile Phone Use Questionnaire, Barthel Index Scale, Modified Early Warning Score (MEWS), Johns Hopkins Fall Risk Assessment Tool (JH-FRAT), and Family Burden Scale of Diseases Survey. Moreover, left ventricular ejection fraction (LVEF) and stroke volume (SV) were measured in all participants. The age of hospitalized patients with CHF was correlated with the Barthel Index Scale, MEWS, and JH-FRAT, whereas LVEF and SV were correlated with MEWS. The important group had a much higher financial burden than the nonimportant group. Linear regression analysis revealed that financial burden and mental health had a remarkable impact on the content of mobile calls about treatment. Furthermore, the economic status of family caregivers determined the importance of smartphone calls in the care of patients with CHF during hospitalization.

CARE JUSTICE FOR UNPAID AND UNDERPAID CARE WORKERS

Abstract Scholarship on older women, family caregiving, feminist gerontology, community-based services and policy change intersected throughout my career. As a social worker, care of older adults has always been a matter of social justice. My focus now is on care justice for those who perform the critical work of long-term services and supports: unpaid family caregivers and underpaid home care workers. This lecture will examine the interrelationships among both types of care laborers, who often face structural constraints on their decision to care and whose work is devalued, marginalized and invisible. Inequities for care workers by race, immigrant status, and sexual orientation are rooted in systemic racism, sexism, xenophobia, and homophobia. This lecture presents the components of a care justice framework, informed by feminism, intersectionality, and care theory, of fundamental structural changes to value collectively the essential work of care, ensure meaningful choice to care, and reduce inequities in care labor.

INFORMAL CAREGIVING EXPERIENCES: CHALLENGES AND OPPORTUNITIES FOR AN AGE-FRIENDLY UNIVERSITY

Abstract The growing Age-Friendly University (AFU) global network has been helping its members assess their institutions and identify action items for increasing age-friendliness. This research investigates one of the issues identified through previous assessment of an AFU as a weakness and area of opportunity, which is the lack of resources and information for campus community members who identify as informal or unpaid family caregivers. Data from N = 70 campus members (26% faculty, 18% staff, 56% students; 84% female, 16% male) were collected in early 2023 through a campus-wide online survey and analyzed by a team of researchers using quantitative analysis for responses to Likert-type items and thematic analysis for open-ended responses. Issues around physical demands, time demands, financial stress, and social and emotional health while caregiving were assessed. Results indicated that respondents are experiencing different types of stress and need additional support and resources as caregivers, particularly related to respite care, mental health services, financial support, and assistance with physical tasks such as housework and transportation. The findings from this research will be used to develop and share resources around caregiving broadly across the university campus, and to ensure that resources are culturally inclusive, particularly as nearly 25% of the enrollment of undergraduate full-time equivalent students is composed of students from a Hispanic/Latinx background. Findings will also be used to establish community partnerships to harness resources from outside the university, and ultimately to help support the campus community moving forward and to achieve a piece of the university’s AFU vision.

A NOVEL NATIONAL FAMILY CAREGIVER ADVOCACY TRAINING PROGRAM: LESSONS LEARNED

Abstract The 2022 National Strategy to Support Family Caregivers recommended 24 legislative or policy changes to improve the national caregiving landscape. With basic training, unpaid family caregivers (CG) can be powerful stakeholder advocates to drive policy change. In collaboration with national caregiver advocacy organizations, the University of Pittsburgh National Rehabilitation Research and Training Center on Family Support hosted a Family Caregiver Advocacy Program (FCAP) with the educational objectives of increasing CG motivation, self-efficacy for, and participation in policy advocacy. FCAP is a series of virtual workshops for family caregivers on caregiving-related policies, how laws are written and passed, how caregiver advocates can inform the policy-making process, how to contact and meet with legislators, and how to tell their story to advocate for change. Caregivers (n=68) enrolled in the inaugural FCAP workshops participated over a 3-month period to develop and implement group-selected advocacy products. FCAP participants ranged from 20-29 to 70+ years old, were primarily women (88%) caring for individuals who are aging (65%), have a physical disability (41%), have an intellectual / developmental disability (27%), and / or have a mental illness (27%). This presentation will report on the CG products and outcomes and plans for future iterations of FCAP based on lessons learned.

EXPLORING THE EVERYDAY EXPERIENCES OF FAMILY CAREGIVERS OF PEOPLE LIVING WITH DEMENTIA: A LONGITUDINAL DIARY STUDY

Abstract People living with dementia rely largely on the support of unpaid family caregivers to remain living at home in the community. The strain created by this dependence is evidenced by high rates of distress among caregivers of people living with dementia and underscores the importance of access to appropriate formal and informal supports for this group. Providing tailored and meaningful supports and services to families requires a good understanding of the multidimensional and dynamic nature of the caregiving experience. Our study employed longitudinal qualitative methodology to understand how caregivers of people living with dementia were experiencing progression of the disease and shifting support needs over a two year-period. Fourteen family caregivers in British Columbia, Canada, wrote monthly diaries reflecting on their experience of caregiving and navigating supports. Thematic analysis of 137 diary entries shed light on different facets of caregiving experience, including psychological and emotional challenges (e.g., feeling overwhelmed, lacking a sense of control, trouble maintaining sense of self) and difficulties navigating formal care and supports (e.g., lack of access to services and information, lack of flexibility in service delivery). However, accounts also reflected participants’ resilience, through a range of coping strategies adopted to resolve problems encountered in caregiving, drawing on emotional and practical support from family, friends, and community. The diaries offer critical perspectives on gaps and inadequacies in formal supports for family caregivers and opportunities to better support the health and wellness of caregivers and recipients through dementia care policy and practice.

FAMILY CAREGIVING DURING THE COVID-19 PANDEMIC FOR OLDER ADULTS WITH DEMENTIA

Abstract Family caregiving plays a crucial role in meeting the care needs of older adults, especially those living with Alzheimer’s disease and related dementias (ADRD). The COVID-19 disrupted an already fragile care landscape by reducing the desirability of nursing home care and the availability of paid caregivers in the home and by destabilizing family caregiving arrangements. Older adult living with ADRD may be at higher risk for destabilized care and more vulnerable to adverse effects from the COVID-19 pandemic’s disruption to the long-term care landscape. This symposium draws on five papers providing qualitative and quantitative evidence of how care arrangements shifted during the COVID-19 pandemic among older adults with ADRD. Patterson and colleagues set the stage for understanding the impacts of the pandemic on family caregiving for older adults with dementia by providing estimates of how many families and households include someone with dementia. Choi and colleagues use a mixed-methods approach to show that family members provided more care during than before the pandemic, especially coresident family members. Lin and colleagues use quantitative evidence to examine how pandemic-specific needs and help from nonresident adult children varied by older adults’ cognitive functioning. Leggett and Tsuker examine the consequences of the pandemic for caregiver stress across different ADRD caregiver relationship types. Finally, Wiemers and colleagues extend the focus on unpaid family caregivers to include paid care and show how tradeoffs between paid and unpaid care for older adults with ADRD were affected by pandemic severity.

CONDUCTING A COUNTYWIDE ALZHEIMER’S DISEASE AND RELATED DEMENTIAS CAREGIVER LANDSCAPE ANALYSIS

Abstract In Los Angeles County (LAC), approximately 1 in 5 caregivers provide care to older adults with dementia and cognitive impairment. By 2040, a projected 1.5 million Californians will be living with Alzheimer’s disease and related dementias, foreshadowing an unprecedented need for family caregivers across the state. In 2021, the LAC Department of Public Health launched the Centers for Disease Control and Prevention-funded LA BOLD initiative with the intent of developing a strategic plan to address dementia awareness and care in LAC, including improving local infrastructure for supporting unpaid family caregivers. To support this effort, LA BOLD commissioned the University of Southern California Family Caregiver Support Center to conduct a landscape analysis of the caregiver population in LAC. The analysis used a multi-method approach that included: primary analysis of community-based organization surveys, stakeholder interviews, focus groups with family caregivers, and secondary analyses of California Health Interview Survey and California Caregiver Resource Center System CareNav™ data and an environmental scan of best-practice caregiving models in use in other states. Results informed the development of three functional recommendations specific to LAC caregivers: 1) Leverage existing infrastructure to strengthen and build family caregiver services and supports; 2) Promote health care payer, provider, and system recognition of and support for family caregivers; and 3) Increase respite services for caregivers. This presentation highlights the methods and the findings from the landscape analysis, providing insights into the barriers and opportunities that a growing caregiver population of persons with dementia may pose to LAC.

Differences in Dementia Caregiver Distress Based on Caregiver Gender and Care Recipient Neuropsychiatric Symptoms

AbstractBackgroundOur healthcare system relies on unpaid family caregivers (e.g., spouses) for care of individuals with Alzheimer’s disease and related dementias (ADRD). Several caregiver and care recipient characteristics are known to be associated with caregiver burden and psychological outcomes in dementia caregivers. Research suggests that caregiver emotional distress is higher among women versus men, and that it increases with elevated care recipient neuropsychiatric symptoms (NPS). However, it is unclear whether gender differences in caregiver distress are independent of care recipient characteristics.MethodCaregivers completed the Neuropsychiatric Inventory‐ Questionnaire (NPI‐Q). Presence of NPS in care recipients was summed across 12 NPI‐Q domains. Using one‐way analyses of covariance (ANCOVAs), we assessed how caregiver gender (woman/man) and care recipient NPS are associated with caregiver burden (Zarit Burden Interview), anxiety (Geriatric Anxiety Index), quality of life (WHO‐5 Well‐Being Index), preparedness for caregiving (Preparedness for Caregiving Scale), and self‐efficacy (General Self‐Efficacy Scale) in a sample of 112 unpaid family caregivers. Covariates included caregiver age and co‐living status. Bonferroni corrections were used to adjust for multiple comparisons. The sample was comprised of 73.2% women with a mean age of 64.6 ± 12.2 years. Caregivers were primarily spouses (68.5%) and daughters (20.7%) of care recipients.ResultRelative to men caregivers, women caregivers reported higher levels of burden (F(1,103) = 24.4, p&lt;.005) and anxiety (F(1,103) = 8.60, p&lt;.005) and lower quality of life (F(1,103) = 9.85, p &lt;.005). Caregivers who rated their care recipients as having more NPS also reported greater burden (F(1,103) = 27.2, p&lt;.005), higher anxiety (F(1,103) = 26.0, p&lt;.005), and lower quality of life (F(1,103) = 34.9, p &lt;.005). There were no significant interactions between gender and NPS. Gender and presence of NPS were not associated with caregivers’ preparedness for caregiving or general self‐efficacy.ConclusionWhile women and men caregivers in this sample reported similar levels of preparedness and self‐efficacy, women endorsed greater levels of emotional distress in the form of caregiver burden, anxiety, and decreased quality of life. Across caregiver gender, age, and co‐living status, NPS in care recipients predicted poor psychosocial outcomes in our sample. Our data suggest the need for interventions to support women caregivers, and mitigate the burden associated with neuropsychiatric disturbances.

Caregiving Time of Unpaid Family Caregivers Assisting Older Adults With Hearing Difficulty.

Objectives: We aimed to investigate the association of older adults' hearing difficulty status with caregiving time. Methods: We used data from two linked surveys of Medicare beneficiaries and family caregivers. Hearing difficulty was defined by hearing aid use and hearing capacity in functional settings. Weighted multivariable linear regression examined the association between hearing difficulty and caregiving time. Stratified analyses were conducted to investigate the moderation effects of caregiving networks and care recipient's dementia status. Results: Among 3003 caregivers, those who assisted older adults with hearing difficulty were observed to spend greater time providing care (β = 1.18, 95% Confidence Interval [CI]: 1.04, 1.32). Stronger associations in magnitude were observed among caregivers without caregiving networks (β = 1.35, 95% CI: 1.13, 1.56) and assisting older adults without dementia (β = 1.22; 95% CI = 1.06, 1.37). Discussion: Hearing difficulty may contribute to greater caregiving time and remains a potential target for caregiver support programs.

Adapting a Dutch Web-Based Intervention to Support Family Caregivers of People With Dementia in the UK Context: Accelerated Experience-Based Co-Design.

Around 700,000 family caregivers provide unpaid care for 900,000 people living with dementia in the United Kingdom. Few family caregivers receive support for their own psychological needs and funding for community respite services has declined. These trends are seen across Europe as demographic and budgetary pressures have intensified due to public spending cuts arising from the 2008 financial crisis and the COVID-19 pandemic. The World Health Organization has prioritized the need to expand the provision of support for caregivers and families of people with dementia by 2025. Web-based interventions have the potential for development as they require modest investment and can be accessed by family caregivers at home. Further cost benefits can be realized by adapting existing interventions with demonstrated effectiveness for new contexts. This paper reports initial findings from the CareCoach study, which is adapting Partner in Balance (PiB), a web-based coaching intervention developed in the Netherlands, for family caregivers in the United Kingdom. This study aims to work with unpaid family caregivers and staff in adapting the Dutch web-based support tool PiB to improve its acceptability and usability for use in the United Kingdom. Accelerated Experience-Based Co-Design (AEBCD) was used with caregivers, staff, and core stakeholders. Interviews, workshops, and stakeholder consultations were conducted. Data were analyzed iteratively. Recommendations for the redesign of PiB for use across the United Kingdom were adjudicated by the study Adaptation Working Party. Sixteen caregivers and 17 staff took part in interviews. Thirteen caregivers and 17 staff took part in workshops. Most (n=26) participants were White, female, and retired. All except 4 caregivers (2 male and 2 female) found the PiB's offer of web-based self-help learning acceptable. Caregivers identified complexity and lack of inclusivity in some wording and video resources as problematic. The staff took a stronger perspective on the lack of inclusivity in PiB video resources. Staff and caregivers coproduced new inclusive wording and recommended creating new videos to adapt PiB for the UK context. AEBCD methods facilitated the engagement of caregivers and staff and advanced the adaptation of the PiB complex intervention. An important addition to the AEBCD method in this process was the work of an Adaptation Working Party, which adjudicated and agreed to new wording where this could not be established in consultation with caregivers and staff. ISRCTN Registry ISRCTN12540555; https://doi.org/10.1186/ISRCTN12540555.

Unpaid Family Caregiving—The Next Frontier of Gender Equity in a Postpandemic Future

This Viewpoint discusses how the COVID-19 pandemic has spotlighted the critical role of unpaid family caregiving.

Occupational Transitions of Family Caregivers of Loved Ones with Dementia

Purpose: The primary purpose of this study was to explore how family caregivers of people with dementia experience transitions in occupations as they assume the caregiver role. Because unpaid family caregivers play a vital part in the scheme of health care, it is important to understand their supports, their perceptions of themselves as caregivers, and the impact of caregiving on relationships, identity, and physical and mental health. Many researchers have studied the effects of caregiver burden, yet minimal attention has been given to the lived experiences of caregiving on their daily roles and routines. Methods: A qualitative descriptive design was used to obtain data from eight caregivers through semi-structured interviews. Content analysis was then applied to all data. Results: The following categories were identified: 1) Benefits, which consisted of the positive experiences gained as a result of caregiving; 2) Consequences, which included the physical, mental, and emotional burdens attached to being a caregiver; and 3) Supports, which were positive resources utilized by caregivers to be both better prepared to care for their loved ones and more capable within their caregiving role. Conclusion: Findings confirm that unpaid caregivers of loved ones with dementia experience dramatic changes in many aspects of their lives. Caregivers felt a strong responsibility as a family member to provide care for their loved ones. It has been found that caregivers spend most of their time engaged in caregiver related tasks, consequently impacting their occupational balance and ability to engage in what they would like to do. Health care providers must be mindful of the changes that caregivers experience, by assisting them to increase supports, anticipate the consequences, and recognize and value the benefits.

Forgotten and Invisible Laborers: Domestic Workers in Singapore and Taiwan

This paper is about legal yet unjust systems of domestic servitude; the oppressive circumstances that ‘foreign maids’ the world over face as unappreciated, unrecognized, and undervalued workers in the invisible domestic space. Regardless of political culture and regime - liberal democracies to authoritarian governance – ‘maids’ are excluded from normal labor standards. The author explains and discusses the legal blind spots, loopholes, and oversight of labor clauses for foreign domestic workers (FDWs) in the East Asian states of Singapore and Taiwan. This paper aims to spark critical conversations about the public/private divide, also the feasibility of enacting home-based legislation for private household workers. It uses the reviewed literature – relevant research studies, government websites, and news sources – and interview findings to advance its main claims. Between May 2021 and July 2022, the author conducted online semi-structured interviews on WhatsApp/Zoom with 61 people who were directly or indirectly involved in eldercare provision: FDWs, domestic employers, recruitment agency managers, unpaid family caregivers, and NGO workers. The author’s analysis shows that FDWs, called ‘maids’ in the local parlance, face a myriad of shocking abuses by sending/receiving governments, unscrupulous recruitment agencies, and host employers who view them as private property (owned) rather than human beings with needs. This paper argues that FDWs deserve to be respected and included in formal labor laws like the rest of the workforce, to better safeguard their physical safety, mental wellbeing, and personal dignity

THE ROLE OF SUPPORT IN THE LIVED EXPERIENCE OF DEMENTIA CAREGIVERS: A SYSTEMATIC REVIEW AND THEMATIC SYNTHESIS

Abstract People living with dementia have complex care needs, which are primarily met by unpaid family caregivers. Family caregivers are often underprepared and under-supported in these roles and often experience negative health impacts associated with their caregiving responsibilities. Research suggests caregiving experiences and associated outcomes can be improved through the use of supportive resources which vary widely in design, access, and implementation. Yet how dementia caregivers perceive, identify, and experience supports in the context of their lived experience is less well understood. Understanding caregivers’ un-proscribed conceptualizations of “support” holds important implications for the optimal design of supportive interventions, which are often under-utilized. The objective of this qualitative evidence synthesis was to systematically identify, appraise, and synthesize evidence regarding dementia caregivers’ conceptualization of support through qualitative studies focused broadly on eliciting caregivers’ reports of lived experience. Forty-one qualitative studies were analyzed and synthesized according to methods suggested by Sandelowski (2007) and Graneheim &amp; Lundman (2004). Six themes were identified and synthesized across included studies which include a range of domains from accessibility, awareness, usability, and match of informal and formal support for caregivers' needs and the needs of their care recipient. Caregivers conceptualized support broadly, extending beyond traditional resources to address aspects of their caregiving role. Findings demonstrate that caregivers readily distinguish between formal and informal support, but do not necessarily evaluate them uniformly and are perhaps focused on the fit of support that extends beyond the caregiving role and is more aligned with how caregivers view support in their daily lives.