Stress is a significant part of daily life, and systemic social inequities, such as racism and discrimination, are well-established contributors of chronic stress for African Americans. Added exposure to the stress of caregiving may exacerbate adverse health outcomes. This secondary analysis describes subjective and objective stress in African American family caregivers, and relationships of subjective and objective stress to health outcomes. Baseline data from 142 African American dementia family caregivers from the "Great Village" study were described using means and frequencies; regression models and Pearson's correlation were used to examine associations between demographics, social determinants of health, and health outcomes. Mixed models were used to examine change and change variation in cortisol. Most caregivers had moderate degrees of stress. Stress was associated with sleep disruption and depressive symptoms, and discrimination appeared to be an independent contributor to depressive symptoms. This work provides a foundation for interpreting subjective and objective indicators of stress to tailor existing multicomponent interventions.

Focus group data collected for a larger project to develop a fotonovela for Latino caregivers was used to conduct a meaning-centered thematic analysis in order to elicit Latino family caregiver perspectives on how behavior problems occurring in the context of dementia are perceived and managed. A sample of 42 Spanish-speaking Latino caregivers were recruited from organizations affiliated with the Alzheimer's Association near San Diego, California. Caregivers were queried on challenging behaviors, coping strategies, as well as other daily challenges. Focus group sessions were conducted in Spanish, translated and transcribed into English, and analyzed using qualitative, grounded anthropological methods. In addition to a range of behavior problems, five indigenous approaches to managing challenging behaviors were identified: acceptance, love, patience, adaptability, and establishing routines of care. Additionally, participants identified persistent challenges which deter effective coping. These include: issues with providers, problems with family members, limited knowledge of resources, emotional distress, and financial strain. To our knowledge, this is one of the few qualitative studies to report indigenous coping strategies for dementia behavioral problems. These findings have the potential to inform culturally-tailored intervention.

Background and objectives

This paper describes the development and evaluation of a short caregiving self-efficacy measure. The self-administered 8-item Caregiver Self-Efficacy Scale (CSES-8) was developed to reflect components of typical caregiver support interventions and to be practical for inclusion in future self-efficacy and caregiving research.

Research design and methods

We administered the CSES-8 in 2 samples: participants in an intervention for caregivers of persons with cognitive disabilities, and a voluntary online survey for caregivers of adults. We evaluated the completion rate, item-scale correlations, reliability, descriptive statistics, and preliminary construct validity of the CSES-8 in both samples, and sensitivity to change in the intervention sample.

Results

The intervention caregivers' sample (N = 158) was 85% female (mean age = 65 years). The online survey sample (N = 138) was 90% female (mean age = 78). In both samples, the CSES-8 had excellent internal consistency reliability (.89 and .88) and good distribution with sufficient variability to detect change. Test-retest reliability was good in the online sample (.73). As evidence of construct validity, most hypotheses were confirmed in both samples. The CSES-8 was sensitive to change at 6 months for caregivers in the intervention program (p < .001).

Discussion and implications

The CSES-8 is short, comprehensive with respect to common components of interventions to improve caregivers' quality of life, and sensitive to change. It can serve a useful role exploring mechanisms by which caregiver intervention studies work, and it can be helpful in examining whether self-efficacy mediates the effect of these interventions on various outcomes such as psychological well-being.

This article presents a comprehensive conceptual framework designed to foster research in the changing needs of caregivers and persons with dementia as they move through their illness trajectory. It builds on prior theoretical models and intervention literature in the field, while at the same time addressing notable gaps including inadequate attention to cultural issues; lack of longitudinal research; focus on primary caregivers, almost to the exclusion of the person with dementia and other family members; limited outcome measures; and lack of attention to how the culture of health care systems affects caregivers' quality of life. The framework emphasizes the intersectionality of caregiving, sociocultural factors, health care systems' factors, and dementia care needs as they change across time. It provides a template to encourage longitudinal research on reciprocal relationships between caregiver and care recipient because significant changes in the physical and/or mental health status of one member of the dyad will probably affect the physical and/or mental health of the partner. This article offers illustrative research projects employing this framework and concludes with a call to action and invitation to researchers to test components, share feedback, and participate in continued refinement to more quickly advance evidence-based knowledge and practice in the trajectory of dementia caregiving.

The clinical need to address stress and depression in Latino dementia caregivers (CGs) combined with low health literacy and less accurate knowledge of dementia motivated the development of a pictorial tool [called a fotonovela (FN)] to teach (a) coping skills for caregiver (CG) stress; (b) self-assessment of depression; and (c) encourage improved utilization of available resources. To test the effectiveness of the FN, 110 of 147 Latino CGs, who were randomly assigned to the Fotonovela Condition (FNC) or the Usual Information Condition (UIC), were included in the final analyses. Self-report measures were given at baseline and post intervention. Results showed that FNC CGs demonstrated significantly greater reductions in level of depressive symptoms than UIC CGs. A significant decrease in level of stress due to memory and behavioral problems exhibited by their loved ones was similar in both groups. The FNC CGs reported that the FN was more helpful and that they referred to it more often than the UIC CGs did with regard to the informational materials they were provided about dementia. In conclusion, a culturally tailored FN can be an effective tool for Latino CGs given their high unmet needs for assistance and various barriers in accessing resources.

INTRODUCTION: This perspective paper addresses the US Hispanic/Latino (herein, Latino) experience with regards to a significant public health concern-the underrepresentation of Latino persons in Alzheimers disease and related dementias (AD/ADRD) clinical trials. Latino individuals are at increased risk for AD/ADRD, experience higher disease burden, and low receipt of care and services. We present a novel theoretical framework-the Micro-Meso-Macro Framework for Diversifying AD/ADRD Trial Recruitment-which considers multi-level barriers and their impact on Latino trial recruitment. METHODS: Based on a review of the peer-reviewed literature and our lived experience with the Latino community, we drew from our interdisciplinary expertise in health equity and disparities research, Latino studies, social work, nursing, political economy, medicine, public health, and clinical AD/ADRD trials. We discuss factors likely to impede or accelerate Latino representation, and end with a call for action and recommendations for a bold path forward. RESULTS: In the 200+ clinical trials conducted with over 70,000 US Americans, Latino participants comprise a fraction of AD/ADRD trial samples. Efforts to recruit Latino participants typically address individual- and family-level factors (micro-level) such as language, cultural beliefs, knowledge of aging and memory loss, limited awareness of research, and logistical considerations. Scientific efforts to understand recruitment barriers largely remain at this level, resulting in diminished attention to upstream institutional- and policy-level barriers, where decisions around scientific policies and funding allocations are ultimately made. These structural barriers are comprised of inadequacies or misalignments in trial budgets, study protocols, workforce competencies, healthcare-related barriers, criteria for reviewing and approving clinical trial funding, criteria for disseminating findings, etiological focus and social determinants of health, among others. CONCLUSION: Future scientific work should apply and test the Micro-Meso-Macro Framework for Diversifying AD/ADRD Trial Recruitment to examine structural recruitment barriers for historically underrepresented groups in AD/ADRD research and care.

BACKGROUND: The Reducing Disability in Alzheimers Disease (RDAD) program is an evidence-based intervention found to be feasible for implementation in community settings in the United States, and effective in reducing depression, one of the major behavioral and psychological symptoms of dementia (BPSD). OBJECTIVE: The goal of the study is to culturally adapt the RDAD for persons with dementia living in community settings of Thailand. METHODS: Key adaptation steps included: 1) assess the community, 2) understand/select the intervention, 3) consult with experts/stakeholders, 4) decide what needs to be adapted, 5) adapt the original program, 6) train staff, and 7) pilot test the adapted materials. RESULTS: Modifications to the original RDAD protocol included changes in number of sessions, mode of delivery, and the specific pleasant activities targeted. The pilot test demonstrated the feasibility and acceptance of the adapted RDAD intervention protocol. Implementers were able to comprehend and implement the core components of the intervention, while family members demonstrated ability to follow instructions, gain knowledge about dementia, and improve skills for setting up realistic goals. CONCLUSION: Following the key adaptation steps outlined above, we were able to successfully modify the RDAD for the Thai cultural context, maintaining core components of the original protocol. Program implementers demonstrated their ability to supervise family caregivers and help them gain the knowledge and skills needed to provide care for older adults with dementia. Findings from the pilot studies were incorporated into final training and intervention protocols currently being implemented and evaluated in a randomized implementation trial in Thailand.

BACKGROUND: Thailand is experiencing a rapid increase in the number of older people with dementia (PWD). We examined the frequency, severity, and correlates of dementia neuropsychiatric symptoms (NPS) among community-dwelling Thai older adults. METHODS: This study was based on analysis of baseline data from a larger clinical trial comparing two different implementation approaches of an evidence-based exercise intervention for people with dementia. To be eligible, participants needed to be age 60 and above, have probable dementia, have one or more NPS, be ambulatory, and have an adult (age 18+) family caregiver. In the 353 eligible participants, we examined the correlation between NPS severity and caregiver distress (assessed by the Neuropsychiatric Inventory Questionnaire or NPI-Q) and used ordinary least squares (OLS) regression to examine associations between PWD and caregiver characteristics and NPS severity. RESULTS: NPS frequency varied from 18% for appetite and/or eating changes to 42% for delusions. NPS severity was significantly (p <0.05) associated with caregiver stress for all individual NPS. Among PWD characteristics, higher ADL score (less functional impairment) was inversely associated with NPS total severity (b = -0.16, p <0.05). More physical role limitation was significantly associated with higher NPS total severity (b = 0.77, p <0.001). Among caregivers characteristics, higher burden was significantly associated with higher NPS total severity (b = 0.19, p <0.001). CONCLUSION: Our study found NPS to be common among community-dwelling PWD in Thailand and have adverse impacts on both PWD and family caregivers. These findings highlight the clinical importance of NPS symptoms among Thai older adults.

Background

Dementia has a huge physical, psychological, social and economic impact upon caregivers, families and societies at large. There has been a growing impetus to utilize Internet interventions given the potential scalability, and presumed cost-effectiveness and accessibility. In this paper, we describe the design of a randomized controlled trial (RCT) aiming to study the impact of online self-help programs on caregivers of people with dementia in India. The experimental group will receive an interactive training and support program and the comparison group will receive an education-only e-book. It will be among the first online support intervention RCTs for a mental health condition in a lower-middle income country.

Methods and design

Two hundred and eight participants are expected to be recruited via several strategies (email, Internet and social media, telephone and face-to-face) starting in the Bangalore region of India. The inclusion criteria for participation in the trial are: (1) being 18 years or older, (2) being a self-reported caregiver of a person with dementia, (3) self-report that a family member has a diagnosis of dementia (AD8 ≥ 2), and experience caregiver distress (≥ 4 on a 1-item burden scale ranging from 1 to 10 or ≥ 4 or < 20 on the Center for Epidemiologic Study-Depression (CES-D) scale (10-item) or ≥ 4 or < 15 on the Generalized Anxiety Disorder Scale (7-item). The intervention group will be offered iSupport, an online self-help training and support program, enabling a personalized education plan with a maximum of 23 lessons. These modules present a range of topics from "what is dementia?" to "dealing with challenging behaviors like aggression." The comparison group will receive an education-only e-book containing similar content. The outcomes of this trial are: caregiver burden as measured by the 22-item Zarit Burden Scale, depressive symptoms, anxiety symptoms (primary outcomes), quality of life, person-centered attitude, self-efficacy and mastery (secondary outcomes).

Discussion

Based on the findings of this trial, we will examine the potential use and scale up of iSupport for caregiver distress in India. This style of online self-help programs could be expanded to other regions or countries or to other suitable caregiver groups.

Trial registration

Clinical Trials Registry-India (CTRI), ID: CTRI/2017/02/007876 .