Supplemental Material for The Role of Specific Affects in the Psychopathology of Dementia Family Caregivers

Family caregivers of dementia patients face significant challenges, including managing their own emotional responses. Understanding factors influencing expressed emotion (EE) is crucial for effective support interventions. The aim of this study was to explore and describe changes in EE among family caregivers of dementia and its associated factors at different time points over 3 months. A 3-month observational study was conducted in Japan. We collected demographically detailed data on family caregivers currently providing care, including care burden, relationship closeness, and depression. We assessed EE using the validated Family Attitude Scale (FAS). After adjustment for multiple confounding factors, multivariate linear regression analysis was performed to assess factors affecting EE at various time points. Linear regression analysis with generalised estimating equations was used to assess associations between 3-month time-varying EE and burden, intimacy, and depression. Fifty-six family caregivers completed the study. Changes in FAS scores did not show statistical differences over 3 months. It is worth noting that the degree of relationship closeness and care burden are important influencing factors of EE in both cross-sectional analysis and longitudinal analysis. Early identification of risk factors can aid in developing interventions aimed at preventing high levels of EE in the dementia family, thereby mitigating their detrimental effects. Tailored interventions are essential to enhance caregiver well-being and cultivate positive caregiver-patient relationships.

Background/Objective: Mammography is one of the most effective ways to diagnose breast cancer early; however, its perceived benefits are complicated by terminal conditions such as dementia. By undergoing mammography, women with dementia risk treatment complications and false-positive results, which can exacerbate psychological distress. The lack of a standard of care confounds the individual roles of the patient, family caregiver, and physician in the decision-making process. This study evaluates the relationship between dementia severity and family caregiver preferences for shared decision making. Methods: Data were gathered from the Decisions about Cancer screening in Alzheimer’s Disease trial, which uses the Dementia Severity Rating Scale (DSRS) and a revised version of the Control Preferences Scale (CPS) to assess family caregiver preferences for decision-making as a dyad (patient and caregiver) and triad (patient, caregiver, and physician). Two multinomial logistic regression models assessed the relationship between DSRS and CPS categories (active, passive, and collaborative), while controlling for the caregivers’ age, gender, education, relationship to patient, self-perceived income, and race. Both models used the “active” group as the baseline; however, Model 1 examined preferences as a dyad and Model 2 as a triad. Results: Model 1 found a statistically significant association between dementia severity and a collaborative approach (p<0.001), and between dementia severity and a passive approach (p=0.014). For every one-unit increase in DSRS score, the odds of being in the collaborative group decreased by 0.083 and the odds of being in the passive group decreased by 0.085. There was no statistically significant association between dementia severity and decision-making preferences in Model 2. Clinical Significance: The association between dementia severity and family caregiver decision-making preferences supports the need for a standard of care regarding breast cancer screening in women with dementia.

Objective: An online learning platform (iSupport for Dementia) for dementia caregivers was developed by the World Health Organization. This study aims to understand dementia caregivers' perspectives on the adaptation of this platform in Macao. Methods: A qualitative descriptive design was applied in the study. The data was collected from 12 dementia family caregivers and 13 institutional caregivers of community elderly centers in two stages. In the first stage, the records of the participants ́ revision opinions on the learning platform after reading the materials were collected and analyzed. In the second stage, family caregivers and institutional caregivers were respectively divided into 3 groups for focus interviews. Then transcribe the recordings into verbatim transcripts for thematic analysis. Results: Combining the views of family caregivers and institutional caregivers , four themes were identified and described as follows: (1) Conveniently learning and access to emotional support are motivators for online learning among dementia family caregivers; (2) Not simple and efficient enough of the website are barriers to online learning for dementia family caregivers; (3) Adaptations of iSupport platform in terms of culture and service information; (4) Suggestions for improving the accessibility and sustainable development of iSupport platform. Conclusions: Dementia family caregivers in Macao have great demand for online learning. The adapted iSupport platform is expected to be an important supplement to offline education and training. iSupport 's diversity, accessibility, sustainability and extending to the Guangdong-Hong Kong-Macao Greater Bay Area and more provinces and cities should be considered. We should continue to meet the needs of dementia patients and family caregivers in combination with the development wave of "Internet + elderly care" in China.

Objective: An online learning platform (iSupport for Dementia) for dementia caregivers was developed by the World Health Organization. This study aims to understand dementia caregivers' perspectives on the adaptation of this platform in Macao. Methods: A qualitative descriptive design was applied in the study. The data was collected from 12 dementia family caregivers and 13 institutional caregivers of community elderly centers in two stages. In the first stage, the records of the participants ́ revision opinions on the learning platform after reading the materials were collected and analyzed. In the second stage, family caregivers and institutional caregivers were respectively divided into 3 groups for focus interviews. Then transcribe the recordings into verbatim transcripts for thematic analysis. Results: Combining the views of family caregivers and institutional caregivers , four themes were identified and described as follows: (1) Conveniently learning and access to emotional support are motivators for online learning among dementia family caregivers; (2) Not simple and efficient enough of the website are barriers to online learning for dementia family caregivers; (3) Adaptations of iSupport platform in terms of culture and service information; (4) Suggestions for improving the accessibility and sustainable development of iSupport platform. Conclusions: Dementia family caregivers in Macao have great demand for online learning. The adapted iSupport platform is expected to be an important supplement to offline education and training. iSupport 's diversity, accessibility, sustainability and extending to the Guangdong-Hong Kong-Macao Greater Bay Area and more provinces and cities should be considered. We should continue to meet the needs of dementia patients and family caregivers in combination with the development wave of "Internet + elderly care" in China.

Affiliate stigma experienced by family caregivers of individuals with dementia may seriously affect home care and prognosis of these patients. This study aimed to explore the levels of perceived affiliate stigma and its influencing factors among family caregivers of patients with dementia in mainland China, which remains a relatively unexplored topic. In this cross-sectional study, purposive sampling was used to recruit dementia family caregivers from an online communication group between April and May 2022. A total of 727 eligible caregivers were included and asked to complete the demographic questionnaire, the affiliate stigma scale, and the caregiver burden inventory. Descriptive statistics, independent sample t-test, one-way analysis of variance, Pearson correlation analysis, and multiple linear regression were used to explore the factors that influence perceived affiliate stigma among dementia family caregivers. The mean score for affiliate stigma of dementia family caregivers was 48.09 ± 16.38 (range: 22-86). Whether there were regular breaks during patient care, time-dependent burden, developmental burden, physical burden, and social burden were significant factors influencing the affiliate stigma of dementia family caregivers. Dementia family caregivers showed a moderate to high level of affiliate stigma. Those who had regular breaks during patient care, higher time-dependent burden, developmental burden, and physical burden and lower social burden exhibited higher levels of affiliate stigma.

To illustrate specific psychosocial interventions aimed at improving self-efficacy among family caregivers enrolled in the Care Ecosystem, a model of navigated care designed to support persons with dementia and their primary caregivers. Enrolled family caregivers work with unlicensed care team navigators who are trained in dementia care and provide information, linkages to community resources, and emotional support by phone and email. We conducted focus groups and interviews with the care team navigators to identify the approaches they used to target caregiver self-efficacy. We assessed mean self-efficacy scores in a sample of 780 family caregivers and selected three exemplary cases in which the caregivers had low self-efficacy scores at baseline with significantly higher scores after six months of participation in the Care Ecosystem intervention. Multiple psychosocial strategies were utilized by care team navigators working with patients with dementia and their family caregivers. Using thematic coding we identified three categories of Care Team Navigator intervention: emotional, informational, and instrumental support. These are consistent with a psychosocial approach to building self-efficacy. Self-efficacy represents a family caregiver's knowledge and preparedness in managing the challenges of care. Psychosocial support shows benefit in improving caregiver self-efficacy that in turn, may positively influence caregiver health and well-being. The findings in this manuscript demonstrate how a model of navigated care can positively impact self-efficacy among dementia family caregivers.

Although there are benefits to formal care, Hispanic/Latino family caregivers of people with dementia face multiple barriers to access. Moreover, the decision-making processes Hispanic/Latino family caregivers use when considering formal care are unclear. The present study examines how Hispanic/Latino family caregivers make formal care decisions, explores why they choose to use or avoid formal care, and identifies accessible methods of disseminating information about formal care options. We conducted virtual interviews with 14 Hispanic/Latino caregivers of people with dementia in the United States. These interviews were guided by the Ottawa Decision Support Framework, conducted in English and Spanish, and analyzed deductively using thematic analysis. Four main themes were identified: (1) reasons family caregivers may not choose formal care, (2) perceived benefits of formal care, (3) how family caregivers choose formal care, and (4) recommendations for delivering information about formal care options. Although Hispanic/Latino family caregivers recognize formal care provides respite and support, many prefer to use it when their caregiving responsibilities become overwhelming. Researchers also found that participants' ability to embrace Hispanic/Latino culture and Spanish proficiency were crucial. Participants expressed the importance of guidance from doctors and the efficiency of online methods in disseminating information. This study provides a foundation for addressing ethnic disparities in access to formal care. It also lays crucial groundwork for the future development of decision-support interventions by examining decisional needs, identifying accessible methods for disseminating information, and centering the Hispanic/Latino experience.

Background: Healthcare disparities continue to exist among the Vietnamese American (VA) community and many factors (e.g., fear of social stigma) deter family caregivers of persons with dementia (PWD) from seeking assistance.Purpose: To pilot-test a language-specific and culturally appropriate mindfulness intervention to improve dementia VA family caregiver well-being.Methods: Bilingual, trained research assistants administered a mindfulness exercise (i.e., deep breathing) to family caregivers and provided continuous support and care resources through weekly home visits for a month. Weekly surveys measured changes in emotion, feelings of connectedness to the PWD, and mood (i.e., happiness) before and after the intervention.Results: A total of nine VA family caregivers of PWD participated in this pilot study. Positive affect showed an increasing trend (Mpre = 16.0 (SD = 3.48), Mpost = 17.1 (SD = 3.06)) and negative affect showed a decreasing trend (Mpre = 6.44 (SD = 3.31), Mpost = 5.22 (SD = 0.359)). Happiness showed an increasing trend (Mpre = 4.30 (SD = 0.767), Mpost = 4.44 (SD = 0.873)).Conclusions: These findings suggest that a home-based dementia family caregiver intervention with mindfulness exercises may potentially increase positive affect and decrease negative affect in Vietnamese American family caregivers of PWD. Similar interventions may help reduce caregiver burden in dementia family caregivers of other cultures.

Dementia family caregiving is a complex role that becomes increasingly intense and demanding over time. The utilization of home and community-based services (HCBS) can provide knowledge and skills to foster preparedness, which may protect against adverse caregiving outcomes; yet actual uptake of services remains low. The current study aims to gather multi-perspective insights underlying the disconnect between caregivers' need for-versus utilization of-HCBS using Pearlin et al.'s (1990) stress process model as a guiding theoretical framework. Five focus groups of 4-8 participants each were conducted with dementia family caregivers (n = 13) and subject matter experts (n = 17). A deductive-inductive thematic approach was used for data analysis. Three overarching concepts were identified: "Pathways to Preparedness'", 'Multi-Level Barriers', and 'Bridging the Gap.' Findings reflected caregivers" need for support in 4 core areas: (a) dementia-specific education/training; (b) competent mental health support; (c) financial/legal navigation, and (4) emergency readiness. Results revealed cross-dimensional barriers across individual-, provider-, and systemic-contexts impeding HCBS access and utilization. Personalized caregiving navigation and technology were deemed potential solutions to facilitate clearer clinical pathways between unmet needs and relevant services. Results underscore the complexity of the HCBS system in the United States and highlight the multidimensional barriers disrupting the pipeline connecting caregivers to HCBS. Findings can inform web-based behavioral interventions aiming to enhance family caregivers' knowledge of, access to, and utilization of formal services in community settings.

To present a concept analysis of neglect, specifically examining its occurrence and implications in the context of family caregiving for older adults living with dementia. A literature search was conducted in Medline, CINAHL, Scopus, and Embase databases in February 2023. Inclusion criteria targeted articles focusing on neglect in dementia family caregiving, leading to the identification of 11 articles for thorough review. Employing Caron and Bowers' dimensional analysis approach, the concept analysis aimed to elucidate neglect as a social construct shaped by diverse contexts, perspectives, and underlying assumptions. Neglect in this context emerged as a multidimensional phenomenon, influenced by contextual elements such as activities of daily living and behavioral symptoms of dementia. It encompasses dimensions including "expectations of unmet needs", "maladaptive behaviors", and "feelings of guilt", considering the perspectives of both caregivers and individuals living with dementia. Recognizing neglect as a dyadic phenomenon emphasizes the significance of interactions between caregivers and individuals living with dementia. A comprehensive understanding of neglect in dementia family caregiving is crucial for effective interventions and support systems. The dyadic perspective is vital for accurate assessment. Primary care physicians, mental health, nurses, and other health professionals play a key role in prevention and supporting family caregivers. Further research is needed to explore the dynamics of dementia caregiving settings strengthening prevention strategies against elder neglect.

This study identified the moderating role of the amount of caregiving tasks on relationships between dementia family caregivers' characteristics (age, education, etc.) and outcomes (burden, etc.). A cross-sectional analysis of surveyed data. A convenience sample of 369 family caregivers (151 males, 218 females) aged 20years or older was recruited from 10 cities in the southern area of South Korea. Data were collected from November-December 2011. Measures of caregiver burden, perceived health status and emotional distress of caregivers related to the memory-behaviour problems of the care recipient were used to assess the outcomes of family caregivers of older adults with dementia. The amount of caregiving tasks has a moderating effect on the relationships between caregivers' characteristics (such as living with the recipient and duration of caregiving) and the caregiver burden. The interaction between the amount of caregiving tasks and status of living with recipient was significant in relation to the emotional distress of caregivers related to the memory-behaviour problems of the care recipient with dementia; however, there was no effect of the amount of caregiving tasks on the relationships between caregivers' characteristics and perceived health status. The amount of caregiving tasks can have a moderating role in the caregiving stress model. Intervention programs need to be developed and implemented to reduce negative outcomes of family caregivers, particularly those living with older adults with dementia.

BackgroundAlthough there are a number of support services accessible for most family dementia caregivers, many caregivers reject available and affordable support. Previous research suggests that rejections of support services may result from insufficient fit of available services with caregivers’ unmet needs and a lack of acknowledgement of caregivers’ unmet needs and associated support services. The present study investigates (a) the number, proportion and types of caregivers’ rejection on recommended tailored support, (b) socio-demographic and clinical determinants of caregiver’s rejection of both people with dementia (PwD) and caregivers, and (c) caregivers’ health-related variables related to caregivers’ rejection.MethodsCaregivers’ rejection of tailored support services was identified based on a standardized, computerized unmet needs assessment conducted by dementia-specific qualified nurses. The present analysis is based on data of n = 226 dyads of caregivers and their community-dwelling PwD who participated in a general practitioner (GP)-based, cluster-randomized intervention trial. The trial was approved by the Ethical Committee of the Chamber of Physicians of Mecklenburg-Western Pomerania, registry number BB 20/11. Data analyses were conducted using Stata/IC 13.1. We conducted Welch’s t-test, Pearson’s product-moment correlation, and conditional negative binomial regression models with random effects for GP to account for over-dispersed count data.ResultsIn sum, n = 505 unmet needs were identified and the same number of tailored recommendations were identified for n = 171 family dementia caregivers from the intervention group at baseline. For n = 55 family dementia caregivers not a single unmet need and recommendation were identified. A total of 17.6% (n = 89) of the recommendations were rejected by caregivers. Rejection rates of caregivers differed by type of recommendation. Whereas caregivers’ rejection rate on recommendations concerning mental health (3.6%), physical health (2.5%), and social, legal, and financial affairs (0%) were low, caregivers’ rejection rates concerning social integration (especially caregiver supporting groups) was high (71.7%). Thus, the rejections of family dementia caregivers are mainly linked to the delegation to caregiver supporting groups. Caregivers’ rejections were mainly related to personal factors of caregivers (n = 66), service-related factors (n = 6), relational factors (n = 1), and other factors (n = 17).Furthermore, our results showed that the number of caregivers’ rejections was associated with a higher functional status of the PwD and are mainly associated with the rejection of caregiver supporting groups. Thus, caregivers visit supporting groups more often when the PwD shows low abilities in activities of daily living. Importantly, this is independent of the status of cognition and depression of the PwD as well as the physical and mental health of the family dementia caregivers.ConclusionsOur results underline the importance of understanding factors that determine caregivers’ rejection of support services. These need to be specifically addressed in tailored solutions for caregivers’ support services.Trial registrationClinicalTrials.gov Identifier: NCT01401582 (date: July 25, 2011, prospective registered).

Recruiting racially and ethnically diverse dementia family caregivers (FCGs) for research can be challenging. The purposes of this presentation are to describe methods of successfully recruiting racially and ethnically diverse dementia FCGs for survey research and to share lessons learned. This study aimed to recruit dementia FCGs who have a chronic health condition and access to a mobile device. FCGs were primarily recruited from the Baltimore-Washington Metropolitan area to complete an online or phone survey about their technology use. A variety of recruitment methods were used including: posting ads in a local newspaper targeting older adults, partnering with a local Alzheimer’s research center and memory treatment center, attending community events, using online research registries, and posting online advertisements. The most successful method of recruiting minorities was by attending community events for caregivers and talking directly with community members about the research study. Online recruitment methods were less successful, but yielded the greatest diversity of participants, including Asian, Native American, mixed race, and African American FCGs. Some challenges associated with recruiting minority FCGs were working with primarily immigrant communities; recruiting FCGs who do not speak English; and building trust among communities that have been negatively impacted by research. Suggestions for future research include using recruitment strategies that enable researchers to build rapport with FCGs, engaging community stakeholders to understand your source population, and using a variety of recruitment methods. Also, online recruiting through credible sources appears to be a somewhat feasible method of recruiting diverse FCGs for survey research.

P01-354 - The relations between psychosocial factors, care burden and depression on the dementia family caregivers

P01-488 - The relations between psychosocial factors, care burden and depression on the dementia family caregivers