Vietnamese American Perspectives on Engagement in an Aging-Focused Research Registry.

INTRODUCTION: We elicited Vietnamese Americans' perspectives on culturally appropriate recruitment into a new research registry: Collaborative Approach for Asian Americans, Native Hawaiians, and Pacific Islanders (AANHPIs) Research and Education (CARE). METHODS: Three focus groups were conducted with 21 Vietnamese Americans. Topics included knowledge about and experiences with research, outreach and recruitment methods for research participation and registry enrollment, and views about research incentives. Focus group transcripts were analyzed thematically. RESULTS: Mean age of participants was 41 years (range 18-73), 57% were male, 86% were non-US born, and 81% had never participated in a research study. Themes that emerged included (1) motivations to participate in research to gain knowledge: for oneself, for family's benefit, and for the Vietnamese American community as a whole; (2) necessity of trustworthy and credible individuals/spokespersons to promote the research initiative; (3) recruitment strategies that are age-specific and culturally appropriate, and (4) importance of monetary incentives. CONCLUSION: Findings from this study will be used to guide recruitment into and engagement with CARE among Vietnamese Americans but are also relevant for other registries aiming to diversify their participants.

Predictors of Psychological Distress Among Rural Family/Friend Caregivers of People Living With Dementia in the United States: Consequences of the COVID-19 Pandemic.

OBJECTIVES: Caregivers of persons living with dementia in rural United States are a vulnerable population. During the coronavirus disease 2019 (COVID-19) pandemic, rural communities experienced heightened disparities in social services, healthcare, suicides, and mortality. Guided by the Caregiving Stress Process Model, this study examines the relationship between the stressors and resources of rural caregivers of persons living with dementia and their experience of depression, stress, and COVID-19. METHODS: One hundred and fifty-two rural caregivers of persons living with dementia completed an online survey, March 1, 2021-April 30, 2022. Analyses used baseline responses to validated scales and an open-ended question, "How has COVID impacted your life as a caregiver?" Dependent variables were depressive symptoms and stress. Bivariate and hierarchical linear regression analyses examined associations of stressors and resources with depressive symptoms and stress. Thematic analysis examined open-ended question responses. RESULTS: Among examined stressors, high care burden (b = 1.94, p < .05) and loneliness (b = 0.76, p < .0001) were positively associated with depressive symptoms. Loneliness (b = 0.24, p < .05) and ≥41 hr spent caregiving per week (reference 10-20 hr; b = 0.99, p < .05) were associated with stress. Among examined resources, self-efficacy for caregiving (b = -0.21, p < .05) was inversely associated with stress. Qualitative results confirmed quantitative results and identified additional pandemic-related themes in stressors and resources. DISCUSSION: We found that caregiver burden, loneliness, and caregiving hours were associated with greater psychological distress among rural caregivers of persons living with dementia during the pandemic, whereas self-efficacy for caregiving was protective. Rural caregivers need increased support to address care burdens and enhance psychological resources for caregiving. CLINICAL TRIAL REGISTRATION NUMBER: NCT04428112.

Caregiving and all-cause mortality in postmenopausal women: Findings from the Women's Health Initiative.

BACKGROUND: Caregiving is commonly undertaken by older women. Research is mixed, however, about the impact of prolonged caregiving on their health, well-being, and mortality risk. Using a prospective study design, we examined the association of caregiving with mortality in a cohort of older women. METHODS: Participants were 158,987 postmenopausal women aged 50-79 years at enrollment into the Women's Health Initiative (WHI) who provided information on current caregiving status and caregiving frequency at baseline (1993-1998) and follow-up (2004-2005). Mortality was ascertained from baseline through March of 2019. Cox regression with caregiving status defined as a time-varying exposure was used to estimate hazard ratios (HR) and 95% confidence intervals (CI) for mortality, adjusting for sociodemographic factors, smoking, and history of diabetes, hypertension, cardiovascular disease (CVD), and cancer. Stratified analyses explored whether age, race-ethnicity, depressive symptoms, frequency of caregiving, optimism, and living status modified the association between caregiver status and mortality. RESULTS: At baseline, 40.7% of women (mean age 63.3 years) self-identified as caregivers. During a mean 17.5-year follow-up, all-cause mortality (50,526 deaths) was 9% lower (multivariable-adjusted HR = 0.91, 95% CI: 0.89-0.93) in caregivers compared to non-caregivers. The inverse association between caregiving and all-cause mortality did not differ according to caregiving frequency or when stratified by age, race-ethnicity, depressive symptoms, optimism, or living status (interaction p > 0.05, all). Caregiving was inversely associated with CVD and cancer mortality. CONCLUSION: Among postmenopausal women residing across the United States, caregiving was associated with lower mortality. Studies detailing the type and amount of caregiving are needed to further determine its impact on older women.

Caregiver Thrive, Learn, & Connect: Testing the Efficacy of an Online Psychoeducational Program for Family Caregivers.

OBJECTIVES: Research reports that providing care to a relative or friend with a chronic health condition or significant neurocognitive disorders, such as dementia is a demanding job. Caregiving often leads to higher risk for adverse mental health outcomes. In this study, we examine the short-term efficacy of the CaregiverTLC online psychoeducational program to caregivers of adults with chronic health or significant memory troubles. METHOD: Using pre-post data from the CaregiverTLC randomized controlled trial (n = 81) we examined differences between the intervention and control conditions on caregivers' psychosocial outcomes for depressive symptoms, self-efficacy, burden, anxiety, and caregiver gains. RESULTS: Data analyses indicated significant decrease in self-reported depressive symptoms, burden, anxiety, and significant increases in self-efficacy and caregiver gains for caregivers in the active intervention compared to those in the control condition. CONCLUSIONS: These results suggest that regardless of whether caregivers care for a person with a chronic illness or significant neurocognitive disorder, they can benefit from participation in this online psychoeducational program. CLINICAL IMPLICATIONS: The CaregiverTLC program may be an effective method to teach skills to reduce depression, burden, and anxiety, and improve self-efficacy and personal gains among caregivers of older adults with chronic illnesses.

Multiphase optimization of a multicomponent intervention for informal dementia caregivers: a study protocol.

BACKGROUND: Family caregiver interventions are essential to support dementia caregiving. However, such interventions are typically complex and consist of multiple components. Existing evidence rarely delineates the effectiveness and interactions between individual components. To optimise intervention, we adopt the multiphase optimisation strategy (MOST) to test the implementation fidelity and determine the effect of each component and the interactions between each component and the corresponding outcome. METHODS: A prospective, assessor-blinded, randomised clinical trial with fractional factorial design using the MOST principle. Two hundred fifty family dementia caregivers will be randomised to one of 16 experimental conditions in a fractional factorial design involving six intervention components: (1) dementia and caregiving education; (2) self-care skills; (3) behavioural symptom management; (4) behavioural activation; (5) modified mindfulness-based cognitive therapy; and (6) support group. The first one is the core component, and the five remaining will be examined. Physical health, caregiver burden, stress, psychological well-being, anxiety and depressive symptoms, and social support will be assessed over the 12-month study period. Following the intention-to-treat principle, linear mixed models and regression analyses will be used to examine the specific effect of the five components and their two-way interactions to propose the most effective combination. DISCUSSION: This is the first study adopting the multiphase optimisation strategy to identify the most active and engaging components of a psychological intervention for caregivers of patients with dementia. In view that dementia caregiver interventions are increasingly diversified and complex, such knowledge is important to maximise the intervention efficacy and allow the intervention to be implemented within an efficient timeframe and dosage. The optimisation of caregiver support interventions is critical to enhance the health outcomes of caregivers and care recipients, thereby, delaying possible institutionalisation and reducing the costs of long-term dementia care. TRIAL REGISTRATION: This study was retrospectively registered in the WHO Primary Registry - Chinese Clinical Trials Registry (ChiCTR2300071235). (Protocol date 30/10/2020; version identifier 2020-2021-0045). Registered on 9 May, 2023. REPORTING METHOD: SPIRIT guideline was followed. PATIENT OR PUBLIC CONTRIBUTION: No patient or public involvement.

A call to address structural barriers to Hispanic/Latino representation in clinical trials on Alzheimer's disease and related dementias: A micro-meso-macro perspective.

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 Alzheimer's 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.

Asian Americans' and Pacific Islanders' preferences in recruitment strategies and messaging for participation in the CARE registry: A discrete choice experiment.

INTRODUCTION: This discrete choice experiment (DCE) identified Asian American and Pacific Islander (AAPI) adults' preferences for recruitment strategies/messaging to enroll in the Collaborative Approach for AAPI Research and Education (CARE) registry for dementia-related research. METHODS: DCE recruitment strategy/messaging options were developed in English, Chinese, Korean, and Vietnamese. AAPI participants 50 years and older selected (1) who, (2) what, and (3) how they would prefer hearing about CARE. Analyses utilized conditional logistic regression. RESULTS: Participants self-identified as Asian Indian, Chinese, Filipino, Japanese, Korean, Samoan, or Vietnamese (N = 356). Overall, they preferred learning about CARE from the healthcare community (vs. community champions and faith-based organizations), joining CARE to advance research (vs. personal experiences), and hearing about CARE through social media/instant messaging (vs. flyer or workshop/seminar). Preferences varied by age, ethnic identity, and survey completion language. DISCUSSION: DCE findings may inform tailoring recruitment strategies/messaging to engage diverse AAPI in an aging-focused research registry.

The Collaborative Approach for Asian Americans and Pacific Islanders Research and Education (CARE): A recruitment registry for Alzheimer's disease and related dementias, aging, and caregiver-related research.

INTRODUCTION: Clinical research focused on aging, Alzheimer's disease and related dementias (ADRD), and caregiving often does not recruit Asian Americans and Pacific Islanders (AAPIs). METHODS: With funding from the National Institute on Aging, we designed and launched the Collaborative Approach for AAPIs Research and Education (CARE), a research recruitment registry to increase AAPIs' participation in ADRD, aging, and caregiving research. We present the design of this novel recruitment program. RESULTS: CARE uses community-based participatory research methods that are culturally and linguistically appropriate. Since CARE's launch, it has enrolled >7000 AAPIs in a 1-year period. The majority enrolled in CARE via community organizations and reported never having participated in any kind of research before. CARE also engages researchers by establishing a recruitment referral request protocol. DISCUSSION: CARE provides a promising venue to foster meaningful inclusion of AAPIs who are under-represented in aging and dementia-related research.

Clinic-based Assessment and Support for Family Caregivers of Patients With Cancer: Results of a Feasibility Study.

Background: Cancer caregiving is burdensome with unique needs, highlighting the importance of assessing caregivers' distress. Caregivers often accompany patients to healthcare visits, presenting an opportunity to complete distress screening at patients' point-of-care. Objective: To evaluate the feasibility of caregiver distress screening at patients' point-of-care and implementing a caregiver psychoeducational session. Methods: We approached caregivers in outpatient cancer clinic waiting rooms. Participants completed depression, burden, anxiety, quality of life, and stress measures. A psychoeducational session with a psychologist was offered to those meeting clinical cutoffs for depression and/or burden. Fifty caregivers completed 1+ measure; however, due to incomplete consent documentation, findings from 23 caregivers are reported. Results: 22% of caregivers screened positive for depression, 30% burden, and 70% anxiety. More than half rated stress as moderate or higher. Mental wellbeing was slightly below that of the general population. More than 75% screened positive on 1+ distress measure. Of the 9 caregivers who met cutoffs for depression and/or burden, two (22%) accepted the psychoeducational session. Conclusion: Caregivers were moderately receptive to distress screening during patients' visits, but were less receptive to engaging in the psychoeducational session due to time constraints and privacy concerns. Implications for Practice: Assessing caregivers' distress can facilitate referrals for supportive services. Offering caregivers psychoeducational intervention outside of patient care may not be acceptable. Future research may evaluate the integration of routine caregiver screening within patient care to promote engagement with mental health services. Foundational: This research offers a unique method of assessing cancer caregivers' distress.

Dementia Neuropsychiatric Symptom Frequency, Severity, and Correlates in Community-Dwelling Thai Older Adults.

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.

Cultural Adaptation of the Reducing Disability in Alzheimer's Disease (RDAD) Protocol for an Intervention to Reduce Behavioral and Psychological Symptoms of Dementia in Thailand.

BACKGROUND: The Reducing Disability in Alzheimer's 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.

Development and Evaluation of the Eight-Item Caregiver Self-Efficacy Scale (CSES-8).

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.

Implementation Science in Thailand: Design and Methods of a Geriatric Mental Health Cluster-Randomized Trial.

BACKGROUND: Thailand has a rapidly aging population yet lacks evidence for effective and scalable evidence-based psychosocial interventions to support persons living with dementia and their family caregivers. In this study of a culturally adapted and evidence-based clinical program (Reducing Disabilities in Alzheimer's Disease [RDAD]), designed to reduce behavioral and psychological symptoms of dementia in older adults, the authors test the hypothesis that an implementation support strategy, Getting To Outcomes (GTO), would produce better implementation and clinical outcomes compared with usual implementation of RDAD in Thailand. METHODS: The study uses a hybrid type III cluster-randomized design to compare eight geographical districts that receive training on both implementing the RDAD clinical intervention and on GTO implementation support strategies (intervention arm) with eight other districts that receive the same RDAD training but without training in GTO implementation support strategies (control arm). GTO is an evidence-based intervention designed to support implementers to better plan, implement, and evaluate innovative intervention programs in a novel setting. Primary outcomes, including implementation and clinical outcomes, will be assessed at baseline, month 3 (posttreatment), and month 6 (3-month follow-up). RESULTS: The research team anticipates that there will be significantly more improvements in the delivery of the RDAD intervention program in the experimental group than in the control group. NEXT STEPS: If clinical trial findings are positive, the authors plan to replicate and scale up the proposed implementation science approach across Thailand to enhance and expand mental health services for older adults with dementia.

A Landscape of Subjective and Objective Stress in African-American Dementia Family Caregivers.

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.

Asian Americans and Pacific Islanders' perspectives on participating in the CARE recruitment research registry for Alzheimer's disease and related dementias, aging, and caregiving research.

INTRODUCTION: This study elicited Asian Americans and Pacific Islanders' (AAPI) perspectives about recruitment strategies/messaging for participation in an aging, Alzheimer's disease and related dementias (ADRD), and caregiving research recruitment registry. METHODS: Using a mixed methods design, CARE (Collaborative Approach for AAPI Research and Education) conducted 14 focus groups (N = 123) with AAPI cultural groups (Asian Indian, Chinese, Filipino, Japanese, Korean, Samoan, Vietnamese) in different languages. Descriptive statistics and thematic qualitative analyses were conducted. RESULTS: Mean age of participants was 54 years (median: 61; range 18-80), 66% were female, and 81% were foreign-born. Themes of consideration for recruitment emerged: (1) culturally/linguistically appropriate outreach in culturally specific spaces, (2) motivations for research participation, and (3) approaches to outreach and recruitment methods. Within each of these themes, there were ethnic differences in specific strategies/approaches reflected as subthemes. DISCUSSION: Recruitment and messaging strategies should be tailored uniquely for each targeted AAPI group, with a thorough understanding of the cultural/linguistic factors that facilitate research participation to increase AAPI participation in ADRD, aging, and caregiver-related research. .

Adaptation of an online training and support program for caregivers of people with dementia to Indian cultural setting.

Support for caregivers of people with dementia has been identified as an action area in the Global Action Plan on the Public Health Response to Dementia 2017-2025 by the World Health Organization (WHO). As a step towards that, WHO developed iSupport - an online program to provide support and training for caregivers of people with dementia. To address the need of caregivers in India, the iSupport program was adapted to the Indian cultural setting. The process of adaptation consisted of four phases: (a) information gathering (review of literature and focus group discussions), (b) preliminary adaptation design (modifications using an adaptation guide), (c) preliminary adaptation tests (face-to-face interviews and online test run), and (d) adaptation refinement (final modifications to the intervention and study process). The initial adaptation was carried out by effecting changes in words, names, resources, caregiving scenarios and audio files to make the English version of iSupport suitable to the Indian cultural context. The results of the qualitative adaptation tests provided additional recommendations like changing the links to India specific websites, revising the eligibility criterion for caregiving duration, re-wording of e-mail texts, inclusion of a time estimate required to complete the assessments and decreasing the numbers of screens that the caregivers had to navigate in the program, which were incorporated in the final phase. Preliminary data showed that the caregivers who participated in the adaptation process found the changes acceptable. Translation of iSupport to different Indian languages could be undertaken after initial effectiveness of the program is established.

Feasibility and preliminary effectiveness of an online training and support program for caregivers of people with dementia in India: a randomized controlled trial.

OBJECTIVES: Internet-based interventions involving elements of cognitive behavior therapy, psychoeducation, relaxation and skills training for caregivers of people with dementia have been found to be promising in Western countries. Given these outcomes, the adapted version of a multi-component online caregiver skills training and support program of the World Health Organization, called iSupport, was tested for feasibility and preliminary effectiveness in India. METHODS: One hundred fifty-one caregivers of family members with a diagnosis of Alzheimer's disease or dementia were randomized to either the intervention arm (iSupport; n = 74) or to the control group (an education-only e-book program; n = 77). Participants were assessed using self-rated measures of depression and perceived burden, which were the primary outcome measures, at baseline and 3-month follow-up. Person-centered attitude, self-efficacy, mastery and self-rated health were also assessed. RESULTS: Fifty-five caregivers (29 in the iSupport group and 26 in the control condition) completed the study. The recruitment and retention rate of the study were 44.67% and 36.42% respectively. No significant differences were found between the two groups at 3-month follow-up on the primary outcomes. Among the secondary outcomes, significant improvement was only seen in caregivers' person-centered attitude towards persons with dementia in the iSupport group (t = 2.228; p < 0.05). CONCLUSIONS: Despite efforts to recruit and retain participants to the online program, this study had a low recruitment and retention rate, which require closer attention and indicates a need for further adaptations of the Indian version of the iSupport program to improve its acceptability and accessibility. The lessons learned from this study will guide the further development of caregiver training and support interventions in India. The trial was registered with the Clinical Trials Registry-India (Trial Registration No. CTRI/2017/02/007876).

Conceptual Framework to Guide Intervention Research Across the Trajectory of Dementia Caregiving.

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.

Perspectives on Components of an Online Training and Support Program for Dementia Family Caregivers in India: A Focus Group Study.

OBJECTIVES: There is a considerable need for support interventions for caregivers of people with dementia in developing countries, such as India. The purpose of the study was to identify the components and understand the acceptability of an online training and support program for dementia caregivers in India. METHODS: Three focus group discussions were carried out with dementia caregivers (2) and health professionals (1) to understand the requirements of an online training and support program from their perspective. The commonly recurring themes were identified and defined using thematic content analysis. RESULTS: The expectations from an online training and support program were wide-ranging from information about identification and management of dementia to support caregiver well-being. Use of simple language, cultural relevance, and an interactive design were suggestions to facilitate the use of the support program. Lack of time, difficulty in accessing the internet, lack of awareness about the portal, difficulty in reaching the rural population were anticipated as challenges in using the program. CONCLUSIONS: The study highlights the requisite components of a first of its kind online training and support program in India by integrating the experiences, motivations, challenges, and expectations of caregivers and professionals involved in dementia care. CLINICAL IMPLICATIONS: The focus group discussions in the current study provide a road map for the development of an online caregiver training and support program underlying the perspectives of the stakeholders for the consolidation of an effective dementia care program for lower resourced settings.