Support use in caregivers of persons with dementia of East Asian backgrounds: An integrative review.

BackgroundAsians are heterogeneous, underscoring the need to examine their subgroups. With the global rise in the older Asian population, the number of Asians living with dementia is expected to exceed 80 million by 2050, including approximately 36 million East Asians. While dementia caregivers of East Asian backgrounds often face high levels of caregiving obligation and stress, their cultural values, such as filial piety and stigma, may hinder seeking support. Still, research on help‐seeking behaviors within Asian subgroups remains limited. This review aimed to identify help‐seeking behaviors among dementia caregivers of East Asian backgrounds.MethodArticles were searched between July and September 2024 through six databases: PubMed, CINAHL, PsycINFO, Scopus, Embase, and Web of Science. Articles were included if they were published in English and targeted dementia caregivers of East Asian backgrounds and help‐seeking behaviors. Thematic analysis was used to synthesize the themes. Quality assessment was conducted using JBI tools and MMAT.ResultsWe included 46 articles (31 qualitative, 13 quantitative, and 2 mixed methods) published between 1998 and 2024. Nineteen were conducted in East Asia, with the others in North America and Oceania. Four themes emerged: (1) patterns of help‐seeking behaviors (stages of help‐seeking, sources of support, cultural values, and priority for dementia care), (2) facilitators and barriers (individual, familial, organizational, and cultural factors), (3) coping mechanisms (emotion‐focused vs. problem‐focused and adaptive vs. maladaptive), and (4) unmet needs of formal support (increasing awareness, improving accessibility, and support for dementia caregivers). Dementia caregivers of East Asian backgrounds preferred in‐home care for their care recipients due to a filial obligation. They relied on informal networks—such as family, neighbors, and churches—for practical support. While they used formal services to obtain information about the disease and available care options, limited accessibility, insufficient culturally adapted resources, and stigma hindered seeking formal support. The assessed quality of each article varied.ConclusionThis review's findings show how previous articles addressed the help‐seeking behaviors among dementia caregivers of East Asian backgrounds. Given their unmet needs reported in the literature, it is pivotal to explore strategies to address these gaps, such as offering culturally tailored programs.

Few population-based studies have directly compared caregivers of persons with dementia to caregivers of persons with other disabilities (nondementia caregivers). We enrolled dementia and nondementia caregivers who were providing substantial and sustained care and compared these groups on measures of caregiver stressors, appraisals of burden, and well-being. Caregivers (N = 251) who provided continuous care for at least 1 year and at least 5 h per week were recruited from the population-based REasons for Geographic And Racial Differences in Stroke (REGARDS) study. Caregivers reported on dementia caregiving status, stressors, burden, and well-being. Forty-seven percent (n = 117) reported caring for a person with dementia. Dementia caregivers reported more stressors, providing more care for self-care and behavioral problems than nondementia caregivers. Dementia caregivers also reported higher appraisals of stress and burden, and more depressive symptoms, but did not differ from nondementia caregivers on mental and physical health quality of life. In multivariable-adjusted models, adjustment for the total number of care recipient problems attenuated differences between dementia and nondementia caregivers on burden and depression measures. Dementia and nondementia caregivers showed relatively few differences in indicators of overall well-being in this population-based sample, perhaps because both groups of caregivers in this study were providing substantial care. Dementia caregivers may require special assistance with dementia-specific problems such as behavioral problems. Clinical interventions and policy changes targeting highly burdened caregivers are needed to support them in allowing their care recipients to age in place at home.

Informal caregivers (ie, individuals who provide assistance to a known person with health or functional needs, often unpaid) experience high levels of stress. Caregiver stress is associated with negative outcomes for both caregivers and care recipients. Mindfulness-based interventions (MBIs) show promise for improving stress, emotional distress, and sleep disturbance in caregivers of persons with Alzheimer disease and related dementias (ADRD). Commercially available mobile mindfulness apps can deliver MBIs to caregivers of persons with ADRD in a feasible and cost-effective manner. We are conducting a single-blind feasibility proof-of-concept randomized controlled trial (RCT; National Institutes of Health [NIH] stage 1B) comparing 2 free mobile apps: the active intervention Healthy Minds Program (HMP) with within-app text tailored for addressing stress among caregivers of persons with ADRD, versus Wellness App (WA), a time- and dose-matched educational control also tailored for caregivers of persons with ADRD. We aim to recruit 80 geographically diverse and stressed caregivers of persons with ADRD. Interested caregivers use a link or QR code on a recruitment flyer to complete a web-based eligibility screener. Research assistants conduct enrollment phone calls, during which participants provide informed consent digitally. After participants complete baseline surveys, we randomize them to the mindfulness-based intervention (HMP) or educational control podcast app (WA) and instruct them to listen to prescribed content for 10 minutes per day (70 minutes per week) for 12 weeks. Caregivers are blinded to intervention versus control. The study team checks adherence weekly and contacts participants to promote adherence as needed. Participants complete web-based self-report measures at baseline, posttest, and follow-up; weekly process measures are also completed. Primary outcomes are a priori set feasibility benchmarks. Secondary outcomes are stress, emotional distress, sleep disturbance, caregiver burden, mindfulness, awareness, connection, insight, and purpose. We will calculate 1-sided 95% CI to assess feasibility benchmarks. Effect sizes of change in outcomes will be used to examine the proof of concept. Recruitment started on February 20, 2023. We have enrolled 27 caregivers (HMP: n=14; WA: n=13) as of June 2023. Funding began in August 2022, and we plan to finish enrollment by December 2023. Data analysis is expected to begin in May 2024 when all follow-ups are complete; publication of findings will follow. Through this trial, we aim to establish feasibility benchmarks for HMP and WA, as well as establish a proof of concept that HMP improves stress (primary quantitative outcome), emotional distress, sleep, and mindfulness more than WA. Results will inform a future efficacy trial (NIH stage II). HMP has the potential to be a cost-effective solution to reduce stress in caregivers of persons with ADRD, benefiting caregiver health and quality of care as well as patient care. ClinicalTrials.gov NCT05732038; https://clinicaltrials.gov/study/NCT05732038. DERR1-10.2196/50108.

IKELS, Charlotte, ed., FILIALPIETY: Practice and Discourse in Contemporary East Asia. Stanford, California: Stanford University Press, 2004, 304pp., $21.95 softcover.The purpose of this book is to bring together the best research into the past, present and future of filial piety in contemporary East Asia. Following an introduction by Charlotte Ikels, eleven experts provide chapters on ritualistic co-residence and the weakening of filial piety in rural China; filial daughters and filial sons or comparisons from rural North China; the meaning of meal rotation and filial piety; living alone and the rural elderly in China; filial piety and death rituals in contemporary Guangzhou Province; filial obligations in Chinese families and paradoxes of modernization; the transformation of filial piety in contemporary South Korea; filial piety in contemporary urban Southeast Korea; the disempowerment of youth in Japan and how this relates to filial piety; filial piety vs. marriage among rural Japanese; and great-grandparenthood in urban Japan. Also included is a glossary of terms, notes, references, and valuable tables and figures, but also excellent photographs to illustrate some chapters. Many chapters include extensive and fascinating case studies of villages and elders in addition to historical overviews as well as rural and urban comparisons.Ikels points out that there is a tremendous amount of interest in and thirst for knowledge about filial piety among western scholars and researchers. What 1 found extremely fascinating about this book is that westerners, generally speaking, have a traditional and super-simplified understanding of filial piety, one that is lacking in all the subtle shades of meaning that are represented by the expert authors of this book. Ikels also points out that there is not now, nor has there ever been, one single version or type of filial piety that has characterized all of East Asia or even single nations. She says. Rather, we argue that beyond a shared core of understandings the actual practice of filial piety, both its delivery and its receipt, is situationally dependent and shaped by local circumstances of history, economics, social organization, and demography and by personal circumstances of wealth, gender and family configuration. [p. 2]Ikels initially defines filial piety as the support of one's parents and points out that unfilial behavior consists of laziness, gambling, drinking to excess, selfishness, disgracing the family and the ancestors, and endangering one's parents through fights and warfare. There are many motivators to encourage filial piety on the part of children, including tradition, upbringing, self-interest [you want your own children to respect and support you in your old age], obedience, and moral sanctions. It is interesting to note that in the past, filial piety was the concern of everyone in the community, in that if a child murdered a parent, the child was beheaded and his body mutilated, neighbors to the right and left of his home were severely punished, his principal teacher in school was killed and even the district magistrate of the village would be stripped of his office and disgraced. The ultimate sanction that parents can use to threaten their children is suicide, a very powerful weapon that brings down the displeasure of the ancestors on the family and the village.Ikels and these researchers point out that there are a number of forces that are changing filial piety today: population dynamics, modernization [parents earning their own money so they live alone and buy their own food/drinks/cigarettes without having ask their children or live under their children's roofs], and the role of the state in counteracting tradition filial piety sentiment. One author points out that exceedingly high suicide rates in those 65+ in East Asia do not support the commonly held view that the elderly in the East Asian system are better off than their more independent western counterparts. …

Resilience as a moderator of role overload and sleep disturbance among caregivers of persons with dementia

Evidence suggests that providing care for an older loved one may present a risk to the health of the caregiver. To understand the link between the psychosocial stress of caregiving and damage to the health of caregivers, numerous studies have assessed the presence of inflammatory biomarkers among caregivers. These biomarkers are measured to understand the relationships between the social stress of caregiving and the health of caregivers. To provide a complete summary of the current literature regarding the most clinically relevant pro-inflammatory biomarkers associated with caregiving. We searched articles in MEDLINE and EMBASE from January 1980 to 30 April 2016 for all studies that assessed biomarkers (cortisol, interleukin-6 and c-reactive protein) among caregivers of community-dwelling older persons. The quality of the selected studies was assessed by two reviewers using the STROBE or CONSORT checklist. Twenty-four studies were included. Most of the studies were cross-sectional and focused on dementia caregiving. Increases in biomarkers were associated with problems such as disturbed sleep, burden or pain and caregiving characteristics, including daily stressors and the duration of caregiving. Cognitive-behavioural therapy and participation in leisure activities were associated with significantly lower levels of cortisol and IL-6, respectively. We found little evidence concerning the association between caregiving status and biomarkers of stress and inflammation. We discuss potential sources of bias and suggest some directions for further research. This stress model can be expanded by taking into account the positive aspects of caregiving and the potential resources of caregivers.

Previous findings of studies on the impact of physical illness on caregiver health have been inconsistent. The authors wanted to determine whether physical disability, as determined by the SF-12 survey that provides information on both physical and mental health problems, contributes to caregiver stress. The authors interviewed 91 primary caregivers (aged 38-85 years) of persons with dementia who had been referred by their family physicians for the first time for formal support services or memory evaluation. Caregivers completed the SF-12 version of the Medical Outcomes Study Short Form Health Survey that generates Mental Component Summary (MCS) and Physical Component Summary (PCS) scores and reported on caregiver stress and concurrent medical conditions and medications. Most caregivers reported stress (76.9%), having medical conditions (72.4%), or taking medications (67%). The MCS but not the PCS scores were significantly lower than community norms, indicating an excess of disability due to mental health problems. Nevertheless, 40.7% had PCS scores indicating some degree of physical disability. Using multiple logistic regression analysis, PCS scores but not the presence of medical problems were independently associated with caregiver stress. Chronic disability as assessed by SF-12 PCS scores is independently associated with caregiver stress. These data suggest that caregivers of persons with dementia should be assessed for disabling physical conditions and mental health problems. In addition, reducing the impact of physical disability could ameliorate caregiver stress.

Dementia caregiving imposes substantial psychological and emotional burdens on family members. While East Asian studies have examined filial piety and caregiver stress, few have explored how cultural values shape psychological distress and role conflict in depth. This study addresses this gap by examining caregivers’ lived experiences in the Chinese Confucian context. To explore the psychological distress and culturally shaped role conflicts experienced by dementia family caregivers in China. A descriptive phenomenological design was used. Fourteen caregivers were recruited in Chengdu, China, in late 2023 through purposive maximum variation sampling. Data were collected via in-depth individual interviews and analyzed using Colaizzi’s seven-step method. Four themes emerged: layered caregiving burden, cultural strain and emotional dissonance, dual emotional experiences of caregiving, and coping strategies and unmet needs. Caregivers reported chronic fatigue, disrupted family roles, and social isolation. Filial piety emerged as a double-edged influence, fostering commitment and resilience while amplifying guilt and discouraging help-seeking. Dementia caregiving in Confucian societies entails complex emotional labor shaped by cultural values. Filial piety acts as both a protective and detrimental force, underscoring the need for culturally congruent interventions such as structured dementia education, respite services, and peer or counseling support to safeguard caregivers’ well-being and ensure sustainable care.

BackgroundWith the aging population in East Asia, the prevalence of dementia and the need for patient care is increasing. Family caregivers of people with dementia are at risk of physical and mental health problems. Filial piety culture regulates relationships within East Asian families and effects the well-being and behavior of dementia family caregivers (CGs).ObjectiveTo systematically assess the experience of East Asian dementia caregivers in filial culture. Methods: Electronic databases, including MEDLINE, APA PsycINFO, CINAHL (via EBSCOhost), Web of Science, and Cochrane Library, were searched for relevant studies up to July 2021. Only original articles were included.ResultsThirteen eligible studies were included, of which eight were qualitative and five were quantitative. Meta-analysis showed a negative association (r = −0.18, 95%CI [−0.28, −0.08]) between filial culture and caregiver burden. The quantitative studies identified four themes related to dementia caregivers’ experiences: (1) Recognition and understanding of filial piety as part of cultural identity, (2) Role transitions- from child to CG, (3) Filial piety’s constraints on CGs; (4) CGs’ self-compassion through changing cultural norms of filial practice.ConclusionFilial culture influences the whole process behind caregiving for East Asian dementia caregivers. At the same time, cultural transition has also brought about new connotations and practices to filial culture.

To explore how informal caregivers of persons with dementia perceive training needs and preferences in the context of online training and support interventions. Informal dementia caregivers commonly present high needs across several domains. Paradoxically, they are more likely to have unmet needs and lower levels of service usage when compared to other caregivers. Most studies on unmet needs of dementia caregivers have been quantitative and resorted to assessment checklists, with a minority focusing on subjective needs. Mixed-methods. Eighty-eight Portuguese digitally literate caregivers filled a web-based questionnaire collecting written statements on training needs and importance ratings on design preferences. Content analysis of text data was carried out by two independent researchers to check the reliability of the analytic process. Descriptive statistics were produced for ratings on design preferences, and associations with caregivers' sociodemographic and care-related variables were inspected. Reporting followed the criteria for reporting qualitative research checklist. Five main categories of training needs have emerged: knowledge of dementia; care interactions; caregiver self-care; community resources; and laws or regulations affecting the caregiver and the care recipient. The most reported need was on care interactions, on the subcategory of providing good quality care. Thematic prominence was analysed according to the caregiver, caregiving and health perception characteristics, with trends found on formal education, relationship with the care recipient, number of hours caring per week, perceived level of dependence of the care recipient and perceived physical and psychological health status of the caregiver. Most valued design features included the use of plain language, easy to interact interface and communication with a professional. Findings from this study further support the delivery of comprehensive interventions addressing the multiple needs of caregivers. Clues are provided for the delivery of online interventions, and conclusions are useful to health professionals working with dementia caregivers.

Objectives: Quality of life among Hong Kong’s family dementia caregivers is a current heightened public health concern. This was one of the first East Asian studies to examine the role of family expressed emotion (EE) in the negative caregiver outcomes associated with dementia caregiving. EE comprises overinvolved and critical communications in families of people with mental illness. In this research, caregiver EE was evaluated as a mediator of the relationship between behavioral and psychological problems associated with dementia (BPSD) and negative caregiver outcomes.Method: Participants were 89 Hong Kong family caregivers (79% female, 84% married, 43% >50 years of age) of people with diagnosed dementia, recruited from elder day care centers. Caregivers completed the Neuropsychiatric Inventory (NPI), Cohen Mansfield Agitation Inventory (CMAI), Level of Expressed Emotion scale (LEE), Zarit Burden Interview, and Center for Epidemiological Studies Depression Scale (CES-D).Results: Agitation, delusions, hallucinations, aggression and irritability were BPSD most associated with caregiver burden and depression. EE significantly mediated the BPSD-negative caregiver outcome relationship. Among EE subscales, intrusiveness was significantly more common and less associated with negative caregiver outcomes. Caregiving hours, low family support, and religious nonaffiliation were associated with EE and poorer caregiver outcomes.Conclusions: The negative impact of BPSD on dementia caregivers in Hong Kong is influenced by EE. Higher scores on EE intrusiveness may be partly accounted for by filial piety, a strong sense of family responsibility characterized by high attentiveness to elderly family members. As EE is a potentially modifiable factor, interventions are considered.

BackgroundInformal 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.MethodsTwo 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.ResultsOur 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.ConclusionThe 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.

BackgroundCompared to their non‐caregiving peers, caregivers of persons with dementia (PWD) endure higher psychological distress, social isolation and increased morbidity and disability. Stress and isolation experienced by caregivers during the COVID‐19 pandemic have added to caregiver burden and worsened health. The objective of this study was to obtain a greater understanding of the health and needs of informal caregivers of PWD during the COVID‐19 pandemic.MethodUsing a cross‐sectional questionnaire, we attained demographic data, characteristics of caregiving during the COVID‐19 pandemic, mental health status, COVID‐19 testing and illness, and protective measures taken to prevent infection with COVID‐19 among caregivers of PWD. From March 2021 to August 2021, respondents were recruited through the Maya Angelou Center for Health Equity’s Alzheimer’s disease (AD) registry. Descriptive statistics (frequency and proportions) of demographic, caregiving, health, and COVID‐19 related data for caregivers of PWD was conducted using SAS® software version 9.4.ResultA total of 274 caregivers of PWD participated in the study. More than half of caregivers were women (56.57%), and approximately 73% of caregivers were married. The racial composition of the majority of caregivers included African American (44.16%), Non‐Hispanic White (26.64%), and Native American (20.44%). Most caregivers were providing care for parents (59.86%) or a partner (21.17%). Nearly 46% of caregivers reported experiencing stress, but not being burnt out. Almost 47% of caregivers reported high psychological distress during the COVID‐19 pandemic. In addition to caregiving stressors due to the COVID‐19 pandemic, caregivers also experienced behavioral changes in their household; more than half of caregivers experienced increased interpersonal conflict with loved ones, friends, or co‐workers. The top 3 needs reported during the COVID‐19 pandemic included support with caregiving, medical care, and food.ConclusionApproximately half of caregivers of PWD experienced stress and psychological distress during the COVID‐19 pandemic. In addition to the stress of caregiving, caregivers lacked support for necessary medical services and social needs. The data collected from caregivers during the COVID‐19 pandemic will be used to develop recommendations to support informal caregivers during emergency situations.

This study investigated how filial piety and intimacy were applied to family caregiving stress. Data were obtained from a survey of 295 family caregivers in Xuan Ceobg and Chi Zhou, a city in An Hui Province of China from January to February 2014. The majority of caregiving was being provided for one’s own parents 78.3%, which was twice the rate of caregiving for a spouse’s parents. On responsibility, ‘caregiving by sharing with brothers/sisters equally’ was most common at 52.9%, followed by main caregiver at 27.5% and sole caregiver at 19.7%. Of living with elderly parents, 40.3% of caregivers did and 59.7% did not. The mean score for filial piety was 3.28 points, intimacy was 4.12 points, and caregiving stress was 2.19 points on a 5-point Likert scale. Of caregivers living with parents, filial piety increased caregiving stress but intimacy reduced stress for sole caregivers. Only caregivers not living with parents could reduce caregiving stress with intimacy.Keywords: Caregiving Stress, Chinese Adult Children, Component, Filial Piety, Intimacy, Living with Parents

Confucian Democracy in East Asia: A Discussion of Sungmoon Kim’s <i>Democracy After Virtue: Toward Pragmatic Confucian Democracy</i>