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Glenna S Brewster,1 Melinda Higgins,1 Miranda Varrasse McPhillips,2 Kalisha Bonds Johnson,1 Fayron Epps,1 Katherine A Yeager,1 Donald L Bliwise,3 Kenneth Hepburn1 1Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, GA, USA; 2University of Pennsylvania, School of Nursing, Philadelphia, PA, USA; 3Division of Sleep Medicine, Emory University School of Medicine, Atlanta, GA, USACorrespondence: Glenna S Brewster, 1520 Clifton Road, NE, Atlanta, GA, 30322-4027, USA, Tel +1 404.712.9164, Email glenna.brewster@emory.eduIntroduction: Sleep disturbance is prevalent in caregivers of persons living with dementia (PLwD). Tele-Savvy, a 7-week virtual psychoeducational intervention, enhances caregivers’ competence and self-care, and reduces depression. While not explicitly designed to do so, Tele-Savvy can potentially improve caregivers’ disturbed sleep. The present study aimed to examine the longitudinal effects of Tele-Savvy on caregivers’ sleep quality and insomnia.Methods: This was a secondary data analysis of a 3-arm randomized control trial [Tele-Savvy (active treatment), Healthy Living (attention control), and usual care (waitlist control)]. Multilevel mixed modeling with intent-to-treat principles tested for group, time, and group-by-time effects. Effect sizes were estimated for all changes from baseline to the initial 6-month post-intervention point. Following completion of the 6-month post-randomization delay, we examined combined outcomes for Tele-Savvy.Results: Participants (n=137; mean age 64.7 years) were predominantly female (68.6%) and White (68.6%). We found no initial group-by-time effects for the Pittsburgh Sleep Quality Index (PSQI) and the Insomnia Severity Index (ISI). For the combined Tele-Savvy group, there was a statistically significant improvement in ISI scores across time (p=0.050). The combined Tele-Savvy effect size for PSQI was d=0.126 and ISI was d=0.310.Discussion: Tele-Savvy resulted in a significant long-term reduction in insomnia symptoms in this sample of caregivers of PLwD and demonstrated a positive trend for improvement in their sleep quality. Since sleep disturbance is so prevalent among caregivers of PLwD, the inclusion of sleep health education into psychoeducation caregiver interventions may yield even better outcomes for caregivers.Plain Language Summary: Many caregivers of persons living with dementia have poor sleep. Tele-Savvy is a 7-week intervention that was delivered online to caregivers improved their caregiving skills and self-care and reduced their depressive symptoms; thus, Tele-Savvy may possibly improve their sleep problems. This study aimed to examine the effects of Tele-Savvy on caregivers’ sleep quality and insomnia over 6 months. Caregivers were randomly assigned to Tele-Savvy (intervention), Healthy Living (comparison intervention), and usual care (no initial intervention). One hundred and thirty-seven caregivers, predominantly female, who were on average 64.7 years, participated in this study and completed measures of insomnia and sleep quality. Insomnia symptoms improved and there was a positive trend for improved sleep quality across time for caregivers who received Tele-Savvy. Since so many caregivers have sleep problems, including sleep health education as a part of other caregiver interventions may lead to even better outcomes for caregivers.Keywords: psychoeducational intervention, Alzheimer’s disease, circadian rhythm, cognitive behavioral therapy for insomnia, depression

This article is about the trial of a transportable psychoeducation program for family caregivers of older adults with Alzheimer's disease and other dementias that was based on a program developed and previously tested in an academic setting. Family caregivers were recruited by agencies in three states and invited to participate in a randomized trial of this six-session program. Questionnaires were administered prior to randomization and again 5 to 6 months later to assess program effect. A total of 52 caregivers completed both questionnaires (22 were in the wait-list control group). Experimental participants' scores on measures of mastery and distress were significantly better than control participants' scores at follow-up (Time 2). Results for this transported program showed benefits to caregivers comparable to those in the previous trials. The program demonstrated that it could be offered in a variety of settings and that it had benefit for caregivers. [ABSTRACT FROM AUTHOR]

This study examined the relationship between four framing categories of caregiving (Relational, Instrumental, Reactive, Role Acquiring), derived from interviews with spouse caregivers, and scores on standardized measures of responses to and outcomes of caregiving. Participants were 132 spouses recruited into a larger intervention study of family caregivers of community-dwelling persons with dementia. Qualitative data were analyzed using constant comparative method; quantitative data were analyzed using one-way analysis of variance (ANOVA). Findings demonstrated that relational spouses scored better than spouses in the other three categories, indicating greater positive well-being. Relational spouses also scored significantly lower than instrumental and reactive spouses on a composite caregiver distress measure (p = 0. 003). These results suggest that interventions may need to be tailored to spouses with different caregiving perspectives. [ABSTRACT FROM AUTHOR]

Families provide the majority of care for persons with Alzheimer's disease. Multiple aspects of caregiving, including decision-making, lead to caregiver burden and stress. The purpose of this pilot study was to describe the decision situations faced by caregivers. Nine female spouse caregivers participated in focus groups to solicit the decision situations they faced while caring for their husbands. Some 183 decision situations were grouped into 14 decision-making topics and five other topical categories: physical safety and wellness; cognitive and emotional; relationships; caregiver well-being; and legal. Categories were organized under two themes: decision situations related to self-care and decision situations related to spouse care. The majority of decision situations relate to maintaining the caregiver's well-being. Implications for nursing and further study are discussed. [ABSTRACT FROM AUTHOR]

The purposes of this study were to compare the characteristics and support systems of caregivers of frail elderly and medically fragile children and to determine what factors discriminated between caregivers who could (and could not) continue to provide home health care. Caregivers of children were significantly more likely (chi square = 52.30)2), p = .0000) to report that they were managing OK than caregivers of frail elderly. They also reported receiving more support and assistance from formal and informal sources, although in general, less than 30% of the caregivers received any help. Five variables (Mental impairment of the elder, poor physical and mental health of the caregiver, high monthly caregiving-related expenses, and use of paid in-home assistance) explained 35% of the variance between caregivers of frail elderly who were managing OK and those who were unable to continue to manage. Six variables (physical and mental impairment of the child, physical health of the caregiver, feeling like there were no alternative providers, time demand and lack of assistance from others) explained 26.57% of the variance between caregivers of children who were managing OK and those who were unable to continue to manage. The findings suggest that a strong objective stressor, combined with a lack of personal and social resources are associated with caregivers' perceptions that they cannot continue to manage home health care. [ABSTRACT FROM AUTHOR]

Evaluations of the effect of interventions on the terminally ill focus on outcomes such as patient satisfaction and quality of life. Due to the theoretical nature of these measures, researchers must rely on patients and family members as primary data sources. Family members of terminally ill patients wee queried concerning their motives for participation in the National Hospice Study and their reactions to an intensive interview schedule. Of those contacted, 94% agreed to the interview. The most frequently cited reasons for participating in the study were the desire to help other families facing a serious illness and the desire to help the hospice movement. Responses indicated a real enthusiasm for study participation in spite of the stressful nature of the terminally ill patient's situation. [ABSTRACT FROM AUTHOR]

Abstract Background Although extensive research exists on informal long-term care, little work has examined the clinical significance of transitions in family caregiving due to a lack of established clinical cut-points on key measures. The objectives of this study were to determine whether clinically significant changes in symptoms of burden and depression occur among caregivers within 12 months of nursing home admission (NHA) of their relatives with dementia, and to identify key predictors of clinically persistent burden and depression in the first year after institutionalization. Methods Secondary longitudinal analysis of dementia caregivers were recruited from eight catchment areas in the United States with 6- and 12-month post-placement follow-up data. The sample included data on 1,610 dementia caregivers with pre- and six-month post-placement data and 1,116 with pre-placement, six-month, and 12-month post-placement data. Burden was measured with a modified version of the Zarit Burden Inventory. Depressive symptoms were assessed with the Geriatric Depression Scale. Results Chi-square analyses found significant (P < .05) reductions in the number of caregivers who reported clinically significant burden and depressive symptoms after NHA compared to pre-placement. Logistic regression models revealed that wives and daughters were most likely to experience clinically persistent burden and husbands were most likely to experience clinically significant depression after NHA. Conclusions In addition to suggesting that clinically significant decreases in caregiver burden and depression are likely to occur following institutionalization, the results reveal particular subsets of caregivers who are at continued risk of distress. Such findings can facilitate development of screening processes to identify families at-risk following institutionalization.

The purpose of this study was to evaluate the efficacy of the Residential Care Transition Module, a six-session, psychosocial, and psychoeducational telehealth intervention for family caregivers of cognitively impaired relatives living in a residential long-term care setting. Eligible participants (including care recipients, regardless of time since admission) were randomized to treatment or usual care control conditions. Survey data were collected at baseline, 4 months, 8 months, and 12 months ( N = 240). Primary analytic outcomes included caregiver subjective stress (a stress process mechanism) and depressive symptoms (a measure of global well-being). Secondary analytic outcomes included secondary role strains, residential care stress, caregiver sense of competence, and self-efficacy (additional mechanisms of action). General linear models tested for the main effects of the intervention at 4 months, and longitudinal mixed models examined the 12-month effects of the intervention. Post hoc analyses also examined the influence of moderators. No significant differences between the treatment and control groups for any primary analytic outcome were apparent. Caregivers in the treatment group whose relatives were admitted to residential long-term care in the prior 3 months were more likely to indicate reductions in depressive symptoms over the first 4 months of participation. Over the 12-month study period, caregivers in the treatment group who were employed reported increased self-efficacy over time. The heterogeneity of dementia care requires a broader consideration of key contextual factors that may influence the efficacy of nonpharmacological interventions. Aligning measures with the preferences, goals, and values of dementia caregivers may further demonstrate the direct benefits of interventions such as the Residential Care Transition Module. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

One in three people with Alzheimer's or other dementias lives alone, without a spouse/partner or nearby children (i.e., is aging solo), yet most dementia caregiving research has focused solely on spouses or children. This study examined the experiences of friends, neighbors, siblings, and others providing unpaid care for someone with dementia. We conducted semi-structured interviews with 14 caregivers (100% female; age 54-85, mean 71; 93% white, 7% black; 29% friend, 29% sibling or in-law, 21% neighbor, 21% church congregant). Participants balanced three priorities: the person living with dementia's quality of life, the person's safety and well-being, and the caregiver's resources. Caregivers described tensions when these priorities conflicted, such as the person with dementia's goal to live alone versus risks to their physical safety. These findings and future research can inform policies and programs to support non-family dementia caregiving., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Introduction: Communicating complex information about haemodialysis (HD) and ensuring it is well understood remains a challenge for clinicians. Informed consent is a high-impact checkpoint in augmenting patients' decision awareness and engagement prior to HD. The aims of this study are to (1) develop a digital information interface to better equip patients in the decision-making process to undergo HD; (2) evaluate the effectiveness of the co-designed digital information interface to improve patient outcomes; and (3) evaluate an implementation strategy., Methods and Analysis: First, a co-design process involving consumers and clinicians to develop audio-visual content for an innovative digital platform. Next a two-armed, open-label, multicentre, randomised controlled trial will compare the digital interface to the current informed consent practice among adult HD patients (n=244). Participants will be randomly assigned to either the intervention or control group. Intervention group: Participants will be coached to an online platform that delivers a simple-to-understand animation and knowledge test questions prior to signing an electronic consent form., Control Group: Participants will be consented conventionally by a clinician and sign a paper consent form. Primary outcome is decision regret, with secondary outcomes including patient-reported experience, comprehension, anxiety, satisfaction, adherence to renal care, dialysis withdrawal, consent time and qualitative feedback. Implementation of eConsent for HD will be evaluated concurrently using the Consolidation Framework for Implementation Research (CFIR) methodology., Analysis: For the randomised controlled trial, data will be analysed using intention-to-treat statistical methods. Descriptive statistics and CFIR-based analyses will inform implementation evaluation., Ethics and Dissemination: Human Research Ethics approval has been secured (Metro North Health Human Research Ethics Committee B, HREC/2022/MNHB/86890), and Dissemination will occur through partnerships with stakeholder and consumer groups, scientific meetings, publications and social media releases., Trial Registration Number: Australian and New Zealand Clinical Trials Registry (ACTRN12622001354774)., Competing Interests: Competing interests: PFG: Consentic shareholder; RBS: CEO of Consentic., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Nearly two-thirds of family caregivers of persons living with Alzheimer's disease or related dementias (AD/ADRD) provide complex care, including medical care. Family caregivers typically receive little to no training on how to provide this care. Furthermore, family caregivers simultaneously grapple with the presence of behavioral and psychological symptoms of dementia (BPSD), diminished communication abilities, and comorbidities such as diabetes. We developed Learning Skills Together (LST), a 6-week digitally delivered psychoeducational program, to facilitate family caregiver abilities to administer complex care tasks. The goal of the present study is to test the efficacy of LST and to reduce adverse outcomes associated with caregiving, such as depressive symptomology and negative appraisal of BPSD., Methods: To test the efficacy of LST, we will conduct a two-arm single-site randomized controlled trial (RCT) with N = 200 family caregivers of persons living with AD/ADRD. Eligible family caregivers will be randomly assigned to participate in either the LST intervention or a structurally equivalent control condition focused on healthy living. All family caregivers will complete four surveys, including a baseline survey administered prior to randomization, a post-intervention survey, and a 3- and 6-month follow-up survey to assess change in study outcomes. Between-group comparisons of each outcome will be evaluated using generalized estimating equation models. Mediation analyses will assess family caregiver self-efficacy as the intervention's mechanism of change in depressive symptomology and BPSD. We will also examine caregiver race, ethnicity, and gender as effect modifiers of the intervention., Discussion: LST findings will inform the field of AD/ADRD and caregiving regarding optimally supporting family caregivers in managing complex care tasks. If efficacious, the LST intervention will support family caregivers in preserving their own mental health while providing complex care., Trial Registration: Clinical Trials.gov NCT05846984 . This study was registered on May 6, 2023., (© 2024. The Author(s).)

Background and Objectives: Psychoeducation interventions using distance learning modalities to engage caregivers in active learning environments have demonstrated benefits in enhancing caregiving mastery. However, few of these programs have been specifically adapted to develop mastery in Black caregivers., Research Design and Methods: A multimethod approach was carried out to assess Caregiving While Black (CWB), including pre-post surveys and in-depth interviews. This psychoeducation course addresses the cultural realities of caring for a person living with dementia as a Black American. Caregivers engaged in online asynchronous education related to healthcare navigation, home life management, and self-care. Primary (caregiving mastery) and secondary outcomes (anxiety, depression, perceived stress, burden, perceived ability to manage behavioral and psychological symptoms) were assessed at baseline and post-course (10 weeks)., Results: Thirty-two Black caregivers from across the United States completed the course within the allotted time frame. Paired sample t test analyses revealed significant reductions in caregiver burden and role strain. Caregiver mastery from baseline to completion increased by 0.45 points with an effect size of 0.26 (Cohen's d). Twenty-nine caregivers participated in an optional post-course interview, and thematic analysis led to the construction of 5 overarching themes: Comfortability with a Culturally Tailored Course; Experiences Navigating the Course Platform; Utility of Course Resources; Time as a Barrier and Facilitator; Familial and Community Engagement., Discussion and Implications: Pilot findings convey a need to continue creating and receiving feedback on culturally tailored psychoeducation programs for dementia caregivers. The next steps include applying results to fuel the success of the next iteration of CWB., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background and Objectives: Latinos caring for a person with Alzheimer's disease and related dementias (ADRD) have the highest prevalence of caregiving. Yet, they are less likely to benefit from evidence-based interventions given their continued underrepresentation in ADRD-related research. Community advisory boards (CABs) have the potential to address barriers to research for underrepresented communities; however, there are complexities to establishing and sustaining CABs. This article describes how our work addressed challenges in CABs related to unbalanced power relations, language barriers, the value of time, and low research knowledge and health literacy., Research Design and Methods: Nine Latino CAB members, including older Latino caregivers, were trained in a comprehensive program designed to increase knowledge about health research methods and ethics, cognitive health, and cultural adaptation methods. Members completed pre- and post-training measures of Alzheimer's disease knowledge, attitudes, and beliefs toward research, and a satisfaction survey., Results: Results from the satisfaction questionnaire indicated that the program was well received. CAB members increased their knowledge regarding the management of behavioral and psychological symptoms of dementia and dementia-associated risk factors and treatment. Positive changes in members' attitudes toward research included increased willingness to participate in trials and subject protection measures., Discussion and Implications: Formalized training in research conduct and ethics and health literacy is a promising strategy to reduce challenges in establishing and maintaining CABs and can also optimize CAB impact to address gaps in older Latino ADRD caregiving research., (© The Author(s) 2023. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objectives: People living with dementia need increasing care over time, but 1 in 3 adults with cognitive impairment lives alone. The goal of this study was to explore the self-identified strengths and resources for future care needs of adults aging solo with early dementia., Methods: Semistructured interviews with 15 adults not living with a partner and with no children in the same state, who self-identified as having early dementia or mild cognitive impairment; hybrid inductive/deductive reflexive thematic analysis using a successful aging framework., Results: Participants placed a high value on maintaining independence and expressed concerns about preserving selfhood and becoming a burden to others. These values influenced how participants appraised financial and social resources available to address future care needs and strategies to preempt or respond to needs such as transportation, help with finances, or activities of daily living., Discussion: Adults without close family are heterogeneous and have variable resources available to address care needs associated with dementia progression. Common values of retaining independence and minimizing burden to others may be helpful in motivating adults aging solo to undertake planning and help-seeking early., (© The Author(s) 2024. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background  Neurosurgery can be a daunting career choice for medical students, with preparation for trainee application often being inaccessible and expensive. This article describes a student-led neurosurgical skills event supported by local neurosurgery faculty members. Such event was designed to offer a means to bridge this gap by providing an opportunity to practice neurosurgical techniques in simulation, and learn about what a career in neurosurgery involves. Methods  Pre- and postskills laboratory surveys were used to ascertain the baseline confidence and knowledge of common neurosurgical techniques, as well as to what both the application to neurosurgery and the typical workload of a neurosurgeon involves. The conference offered six neurosurgical workshops as well as three lectures to provide practical and theoretical learning opportunities. The session included introduction to the candidates and faculty, identification of learning objectives, and career discussion. Postcourse feedback also was also used to assess learning outcomes. Results  Eighteen students attended the event. Postskills event, students were significantly more likely to understand the principles behind all of the relevant neurosurgical skills included on the day. Additionally, students were more likely to understand what a career in neurosurgery involves, and how to approach applying for a training number. Respondents enjoyed the workshops, valued hands-on experience and interactions with consultants, found it affordable, and would recommend to their peers. Conclusions  For medical students interested in a career in neurosurgery, opportunities to learn relevant techniques and skills are often expensive and difficult to come across. Here, we highlight affordable methods of simulation to result in significant student satisfaction. Additionally, providing ample opportunity to practice different neurosurgical techniques under almost 1:1 level tutoring enables significant increases in students' confidence and understanding of different neurosurgical concepts. We greatly encourage other medical student groups to develop their own hands-on simulation events to attract medical students to a surgical field often considered daunting and inaccessible, and address gaps in the medical school curriculum., Competing Interests: Conflicts of Interest None declared., (Asian Congress of Neurological Surgeons. This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. ( https://creativecommons.org/licenses/by-nc-nd/4.0/ ).)

Objectives: The goal of this study was to develop and evaluate an intervention aimed at increasing cognitive empathy, improving mental health, and reducing inflammation in dementia caregivers, and to examine the relevant neural and psychological mechanisms., Methods: Twenty dementia caregivers completed an intervention that involved taking 3-5 daily photographs of their person living with dementia (PLWD) over a period of 10 days and captioning those photos with descriptive text capturing the inner voice of the PLWD. Both before and after the intervention, participants completed questionnaires, provided a blood sample for measures of inflammation, and completed a neuroimaging session to measure their neural response to viewing photographs of their PLWD and others., Results: 87% of enrolled caregivers completed the intervention. Caregivers experienced pre- to post-intervention increases in cognitive empathy (i.e. Perspective-Taking) and decreases in both burden and anxiety. These changes were paralleled by an increased neural response to photographs of their PLWD within brain regions implicated in cognitive empathy., Conclusion: These findings warrant a larger replication study that includes a control condition and follows participants to establish the duration of the intervention effects., Clinical Implications: Cognitive empathy interventions may improve caregiver mental health and are worthy of further investigation.

Background: The Framework for Reporting Adaptations and Modifications-Enhanced (FRAME) is a tool that systematically guides decision-making and reporting of adaptations made to evidence-based interventions. Using FRAME, we documented the process and outcomes of adapting the Savvy Caregiver Program (SCP) for Korean American dementia caregivers., Methods: Sequential adaptation was initiated with linguistic attunement, followed by pilot implementation and full adaptation. Our data-driven adaptation with multiple data sources and a feedback loop among multiple stakeholders yielded a total of 32 modifications, and each was coded according to the eight domains of FRAME: (1) what was modified, (2) who participated in recommending and deciding the modification to be made, (3) when the modification occurred, (4) whether the modification was planned, (5) whether the modification was fidelity-consistent, (6) whether the modification was temporary, (7) at what level of delivery, the modification was made, and (8) why the modification was made., Results: The areas of adaptation were evenly distributed across context (37.5%), content (31.2%), and training (31.2%). The primary reasons for modification were for engagement (62.5%), followed by fit with recipients (43.8%) and outcome improvement (31.1%). About 66% of the modifications were applied to the entire target group, and all modifications were fidelity-consistent., Conclusions: The FRAME categorization provided a detailed understanding of the process and nature of adapting the SCP and served as a foundation for further implementation and scale-up. FRAME not only serves as a guide for adapting evidence-based interventions but also promotes their replicability and scalability., (© 2024. The Author(s).)

This article delves into the understudied realm of investigating the potential benefits of integrating design thinking into community-based participatory research within the context of culturally diverse dementia caregivers. Following the Double-Diamond process model, we conducted a series of workshops with 15 family caregivers of dementia patients from three distinct communities (multi-racial, Black, and Latino ethnicity) to gain insights into their daily experiences and co-create interventions that could address their pressing challenges. The research question for this study aimed to explore the potential benefits of design thinking in community-based research on dementia caregiving. Our findings contribute to the health design community by demonstrating the potential of design thinking to 1) uncover common and distinct challenges in diverse communities, 2) translate findings into actionable solutions, and 3) design tailored interventions that are responsive to the context-specific needs of the community. Our study leads us to conclude that the integration of design thinking as a catalyst in community-based participatory research has the potential to amplify the identification of nuanced and previously unexamined challenges through empathetic exploration, and to propose innovative interventions that are more amenable to uptake and acceptance within the community.

Background and Objectives: Tele-Savvy is a synchronous/asynchronous psychoeducation program for caregivers of community-dwelling persons living with Alzheimer's disease and related dementias (ADRD) designed to increase caregivers' competence and confidence (mastery) in caregiving. Its overall efficacy was tested in a randomized controlled trial., Research Design and Methods: This secondary data analysis examined the caregiver mastery and psychological health (i.e., perceived stress, depressive symptoms, and burden) outcome of 153 non-Hispanic Black American and White caregivers (31 non-Hispanic Black American and 122 White caregivers) from baseline to 6 months postintervention. Given the difference in the sample sizes of Black and White caregivers, a descriptive post hoc subgroup analysis was conducted of 21 non-Hispanic Black American and 20 White adult children and grandchildren caregivers., Results: In the overall sample, Black American caregivers demonstrated higher levels of mastery and lower levels of distress than White caregivers at baseline and across all time points. Over time, White caregivers, but not Black American caregivers, experienced significantly improved levels of mastery and significantly lowered levels of depression. Within the subgroup analysis, except for a moderate effect size in the management of situation scores over time among Black American adult children caregivers, similar results were obtained., Discussion and Implications: The findings highlight the strengths and shortcomings of the Tele-Savvy program in improving caregiver mastery and reducing negative psychological health outcomes. Intentionally tailoring the Tele-Savvy program to certain racial and caregiving groups may hold promise in meeting the needs of more ADRD caregivers., Clinical Trial Registration: NCT03033875., (© The Author(s) 2023. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objectives: Language accommodation is indispensable in making evidence-based interventions available and accessible to ethnic minorities with limited English proficiency. As part of the larger effort to culturally adapt the Savvy Caregiver Program for Korean American dementia caregivers, we first conducted linguistic adaptation, and the present study reports the preliminary findings on participants' changes in depressive Symptoms., Methods: The linguistically adapted program was delivered to two small groups of Korean American dementia caregivers (total n  = 13) by two Savvy-certified Korean-speaking trainers. Participants' depressive symptoms were assessed at three time points (pre-intervention, immediate post-intervention, and 6-month follow-up)., Results: Following the intervention, participants exhibited lowered depressive symptoms ( t  = 8.64, p  < .001, Cohen's d  = .89). This benefit was sustained at 6-month follow-up., Conclusions: Findings suggest that the therapeutic benefit of the Savvy Caregiver Program could potentially be shared with linguistic minorities when delivered in their native language., Clinical Implications: Although limited in its scope and nature, the pilot study with linguistic adaptation sheds light on efforts to close the gap in the evidence-based intervention delivery.

Introduction: There is a need for resources to guide informal carers in medication management for people with dementia. Availability of resources on medication management guidance has yet to be explored., Areas Covered: A systematic search of MEDLINE, Embase, CINAHL and PsycINFO was performed in May 2022 to identify and evaluate resources for carers of people with dementia that provide guidance in medication management. Google and known repositories were also searched. Readability of text-based resources was examined using the Flesch-Kincaid reading level, the Flesch reading ease and the Gunning-Fog index. Resources were further evaluated using the Patient Education Material Assessment Tool (PEMAT or PEMAT-A/V)., Expert Opinion: Fifteen resources were identified, which largely focused on medication administration with limited discussion of shared decision-making. Current resources do not appear to have included people living with dementia or their carers in their development and did not address high-risk care settings. Codesign of resources with carers and people with dementia would ensure that resources are comprehensive and target their needs. Future research should therefore focus on development of readily available and understandable resources that provide medication management guidance for carers across different health settings, to comprehensively address the multi-faceted nature of dementia.

Background: Limited English proficiency (LEP) of dementia caregivers poses a critical barrier to these caregivers' access to evidence-based interventions. In an effort to make such interventions available and accessible to dementia caregivers with LEP, in the present study we use Barrera and colleagues' (2011) three-step model of cultural adaptation: (1) information gathering, (2) preliminary adaptation, and (3) full adaptation. Selecting Korean Americans as a target group and the Savvy Caregiver Program (SCP) as a target intervention, we demonstrate the sequential process of cultural adaption and report the outcomes on feasibility and acceptability., Methods: Preliminary adaptation with linguistic attunement was conducted by translating the SCP manual into Korean and certifying two lay individuals who were bilingual in English and Korean as Savvy trainers. The 6-week online SCP program was delivered by the two trainers in Korean with six to seven caregiver participants per trainer (N = 13). Feasibility and acceptability of the SCP for both caregiver participants and trainers were assessed using mixed methods, and their data then informed full adaptation., Results: Findings not only showed the initial efficacy of the linguistically attuned SCP but also suggested areas for further modification. Data-driven assessment yielded a list of recommended changes for full adaptation, which was reviewed by the SCP developer to ensure fidelity and by community and research partners to confirm contextual and cultural relevance., Conclusions: The adopted changes are broadly summarized as representing logistical, technical, and cultural issues. Given our refined set of educational materials and implementation guidelines, we discuss future directions for research and development., (© 2022. The Author(s).)

Objective: Many socio-economic reforms that could reduce health disparities are not implemented because people justify existing systems and fear changes thereto. This study aimed to identify socio-demographic factors associated with system justifying beliefs to better understand how they are maintained in Canada. In doing so, we hypothesized that (1) systems justification is a default cognitive position, buttressed by the palliative benefits of system-justification, (2) lack of success in a given system generally motivates people to doubt the legitimacy of that system, and (3) system-justifying beliefs are rejected only when the costs of doing so are low enough and/or the benefits are high enough to outweigh the innate needs-fulfillment benefits of system-justification., Methods: Testing these hypotheses, we recruited participants living in Canada, aged 16+, to complete an online survey after being recruited via paid social media advertisements. Multivariable regression models identified factors associated with Economic System Justification Scale (ESJS) scores. Explanatory variables included demographic measures of social position, self-rated health, and patterns of social inclusion., Results: Among 2,619 participants, system-justifying beliefs were wide-spread, with the average level of support across ESJS scale items exceeding 50%. Lower ESJS scores were associated with worse health, more loneliness, and lower socioeconomic status. Despite the pattern that marginalization erodes system-justification, several historically marginalized characteristics (e.g., non-white ethnicity and non-binary gender) were associated with relatively high system-justification, compared to matching privileged characteristics (e.g., white ethnicity; masculine gender)., Conclusion: Supporting our hypotheses, we identify a general trend that social marginalization is associated with less system-justification. Those benefitting from the status quo (e.g., healthier, wealthier, less lonely) were more likely to hold system-justifying beliefs. However, some groups who are disadvantaged within the existing system reported higher system-justification-suggesting that system oppression may be a key moderator of the effect of social position on system justification., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Card and Hepburn.)

Dementia caregivers are responsible for the daily care and management of individuals who are among the most vulnerable to the serious consequences of COVID-19. This qualitative study explores the experience of Black dementia caregivers during the COVID-19 pandemic in the United States. Nineteen Black dementia caregivers were recruited to participate in semi-structured focus groups held in April 2021. Four overarching themes were constructed during analysis: social isolation , decreased well-being , the good and bad of telehealth , and challenges fulfilling health care needs . The results indicate the experience of Black dementia caregivers overlaps with existing literature on the experiences of dementia caregivers of other races during COVID-19. These results can assist in addressing the specific needs and improving the experiences of dementia caregivers in current and future public health crises.

Background: The global critical shortage of health workers prevents expansion of healthcare services and universal health coverage. Like most countries in sub-Saharan Africa, Kenya's healthcare workforce density of 13.8 health workers per 10,000 population falls below the World Health Organization (WHO) recommendation of at least 44.5 doctors, nurses, and midwives per 10,000 population. In response to the health worker shortage, the WHO recommends task sharing, a strategy that can increase access to quality health services. To improve the utilization of human and financial health resources in Kenya for HIV and other essential health services, the Kenya Ministry of Health (MOH) in collaboration with various institutions developed national task sharing policy and guidelines (TSP). To advance task sharing, this article describes the process of developing, adopting, and implementing the Kenya TSP., Case Presentation: The development and approval of Kenya's TSP occurred from February 2015 to May 2017. The U.S. Centers for Disease Control and Prevention (CDC) allocated funding to Emory University through the United States President's Emergency Plan for AIDS Relief (PEPFAR) Advancing Children's Treatment initiative. After obtaining support from leadership in Kenya's MOH and health professional institutions, the TSP team conducted a desk review of policies, guidelines, scopes of practice, task analyses, grey literature, and peer-reviewed research. Subsequently, a Policy Advisory Committee was established to guide the process and worked collaboratively to form technical working groups that arrived at consensus and drafted the policy. The collaborative, multidisciplinary process led to the identification of gaps in service delivery resulting from health workforce shortages. This facilitated the development of the Kenya TSP, which provides a general orientation of task sharing in Kenya. The guidelines list priority tasks for sharing by various cadres as informed by evidence, such as HIV testing and counseling tasks. The TSP documents were disseminated to all county healthcare facilities in Kenya, yet implementation was stopped by order of the judiciary in 2019 after a legal challenge from an association of medical laboratorians., Conclusions: Task sharing may increase access to healthcare services in resource-limited settings. To advance task sharing, TSP and clinical practice could be harmonized, and necessary adjustments made to other policies that regulate practice (e.g., scopes of practice). Revisions to pre-service training curricula could be conducted to ensure health professionals have the requisite competencies to perform shared tasks. Monitoring and evaluation can help ensure that task sharing is implemented appropriately to ensure quality outcomes., (© 2022. The Author(s).)

In reports of randomized controlled trials, thorough description of the attention control condition has been recommended, yet is frequently lacking. The Tele-Savvy Caregiver program for informal caregivers of persons living with dementia was tested in a randomized controlled trial with an attention control condition. The purpose of this trial was to test Tele-Savvy's efficacy in reducing the negative effects of caregiving on caregivers, promoting quality of life for persons living with dementia, and improving caregiver mastery. We describe the design and implementation of and examine the outcomes associated with the attention control condition. Caregivers were randomized to the immediate Tele-Savvy (active condition), Healthy Living (attention control), or waitlist. The attention control content was focused on healthy lifestyle and was not intended to affect the outcomes that Tele-Savvy targeted. The attention control group was similar to Tele-Savvy in the intervention structure and duration: it consisted of seven weekly group videoconferences and 36 video lessons. Data on outcomes of caregivers and persons living with dementia were collected at baseline and 3 and 6 months postbaseline. Multilevel mixed effects models were used to determine changes in the outcomes. One hundred and eleven caregivers were randomized to the attention control condition (attrition 21.6%). Eighteen formative assessment interviews focusing on caregivers' experience in the attention control condition were conducted. The attention control condition completers had no statistically significant changes in the variables that Tele-Savvy targeted. These results may be used in the design and implementation of attention control conditions in behavioral intervention research., (© 2022 Wiley Periodicals LLC.)

Over 6 million older Americans live with Alzheimer's disease and related dementias; Black American older adults' prevalence is more than twice that of non-Hispanic White older adults. The Black American dementia caregiving experience can be encapsulated within the Black Family Socioecological Context Model, which provides a conceptual basis for examining social determinants of health at individual, family, community, and societal levels with careful consideration for how the intersection of race, gender, and class of Black American dementia caregivers influences the multiple dimensions of their caregiving experiences. Family dynamics, community setting, and health care systems have a potentially bidirectional influence on these caregivers, which is shaped by historical and ongoing systemic and institutional racism and general disenfranchisement. This Forum article outlines how the Social Cognitive Theory offers ways for Black American dementia caregivers to achieve a sense of mastery within the complicated and fraught ecology within which their caregiving occurs. We propose a research agenda to create programs and interventions for enhancing a sense of mastery among Black American dementia caregivers. Two concepts in particular, "constraints" and "efficacy expectations," provide ways to create a systematic approach to developing successful coping strategies for the constraints perceived by individuals as they undertake and function in the caregiving role. The recognition of the complexity of the caregiving ecosystem and intersectionality of caregivers' experience and identity emphasize the importance of individualization: Each caregiver's experience of this ecosystem-and therefore each Black American dementia caregiver's way to mastery within it-will be uniquely shaped and experienced., (© The Author(s) 2021. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Family caregivers to persons living with dementia increasingly provide complex care tasks, though most (53%) do so without any training. "Complex care" includes medical/nursing tasks, as well as personal care tasks that require disease knowledge. Of the 67% of dementia caregivers who provide complex care, nearly half worry about making a mistake. To help caregivers feel more confident when providing complex care tasks, we developed and conducted a pilot study of the 4-week Learning Skills Together psychoeducation program (LST; N=35). Participants in LST reported high satisfaction with the program and found the information shared about complex care was easy to understand. Pre- and post-test data demonstrated improvements in mean caregiver self-efficacy at both 4-weeks and 8-weeks post-intervention (mean difference (MD)=1.0, SD= 1.6, p-value=0.004 and MD= 1.0, SD=2.2, p-value=0.038, respectively). Results demonstrate the potential for a brief psychoeducational program to prepare caregivers to provide complex care to persons living with dementia., Competing Interests: Declaration of Competing Interest None., (Copyright © 2022 Elsevier Inc. All rights reserved.)

Background and Objectives: Family caregivers will grow in number as dementia prevalence increases, underscoring the continued importance of equipping these individuals for their new roles and ameliorating the adverse effects of caregiving., Research Design and Methods: A three-armed, waitlist, randomized trial design tested Tele-Savvy, an online adaptation of a successful in-person psychoeducation program, the Savvy Caregiver. Tele-Savvy is delivered over 43 days to groups of 6-8 caregivers in 7 weekly synchronous sessions accompanied by 36 brief asynchronous video lessons. We enrolled 23 cohorts of 15 eligible caregivers (N = 261), randomized 2:2:1 to active, attention control, and usual care arms. We assessed caregiver psychological well-being and caregiving mastery at baseline and 3, 6, 9, and 12 months. Multilevel linear models assessed outcomes over the 3 time points examined. The trial was slightly truncated, with Data and Safety Monitoring Board approval, because of the apparent confounding psychological effects of coronavirus disease 2019 restrictions., Results: Study findings indicate statistically and clinically significant benefits to Tele-Savvy arm caregivers (with moderate to large effect sizes) in the areas of depression, perceived stress, reaction to care recipients' behaviors, and enhancement of caregiver mastery. Expected benefits for caregiver burden and anxiety were not found., Discussion and Implications: Findings attest to program efficacy and the viability of employing distance means to improve family caregivers' emotional well-being and sense of mastery in the caregiving role over a 6-month period. Next steps entail finding alternate ways to deliver the program to those with connectivity and/or time constraint problems., (© The Author(s) 2021. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objectives: The number of people living with dementia is growing and most patients go years without receiving a specific diagnosis or support services, leading to suboptimal care, negative impacts on the quality of life, and increased costs of care. To address these gaps, the State of Georgia Department of Human Services collaborated with academic and community partners to create the Georgia Memory Net (GMN)., Design: GMN is a hub and spoke model partnered with Emory University's Cognitive Neurology Clinic and Emory Goizueta Alzheimer's Disease Research Center to provide training and support for best practices in diagnosis and management to Memory Assessment Clinics (MACs) throughout the state., Setting: Communities across the State of Georgia., Participants: GMN is a mix of academic and community providers, hospital systems, state and community agencies. Patients and families are evaluated at the MACs and connected to community services., Intervention: A dedicated clinic workflow: primary care providers (PCPs) identify a memory problem and refer to the MACs for diagnostic evaluation; meeting with a community services educator, and development of a care plan. The patient is reconnected with the PCP for continuity of care., Measurements: Initial metrics include numbers of unique patients, total patient visits, and referrals to state agency partners for community services., Results: GMN established five MACs across Georgia with annual state funding. Partners at Emory University provided initial training; refined patient workflows for best practices; and provide ongoing support, guidance, and continuing education for MAC teams. Local PCPs and community services partners demonstrated strong engagement with the new model., Conclusions: GMN is an innovative care model to improve access to accurate and timely diagnosis in patients with memory loss. GMN may help improve the quality of life for patients and families through preventive and early care., (© 2022 The Authors. Journal of the American Geriatrics Society published by Wiley Periodicals LLC on behalf of The American Geriatrics Society.)

The health benefits of postpartum contraception are well established. Using 2013/14 Togo Demographic and Health Survey (DHS) data, we examine the association between contraceptive use among women who gave birth within 24 months of the DHS and four health service use indicators - antenatal care, institutional delivery, postpartum care, and immunization of the last child - in addition to socio-demographic factors. Factors associated with postpartum contraceptive use in Togo included having their last birth in a health facility, having a postnatal check within two months of birth, youngest child receiving the first diphtheria-pertussis-tetanus vaccine, wanting to space children more than two years from last birth or not have more children, living outside the Savanes region, husband's desire for number of children agreeing with the woman's, and increasing breastfeeding duration. These findings highlight the need for programming which strengthens the integration of contraception into reproductive and immunization services in Togo.

This study evaluated a 12-week, home-based combined aerobic exercise (walking) and computerized cognitive training (EX/CCT) program on heart failure (HF) self-care behaviors (Self-care of HF Index [SCHFI]), disease specific quality of life (Kansas City Cardiomyopathy Questionnaire [KCCQ]), and functional capacity (6-minute walk distance) compared to exercise only (EX) or a usual care attention control (AC) stretching and flexibility program. Participants ( N = 69) were older, predominately female (54%) and African American (55%). There was significant improvement in self-care management, F (2, 13) = 5.7, p < .016; KCCQ physical limitation subscale, F (2, 52) = 3.4, p < .039; and functional capacity (336 ± 18 vs 388 ± 20 m, p < .05) among the EX/CCT participants. The underlying mechanisms that EX and CCT targets and the optimal dose that leads to improved outcomes are needed to design effective interventions for this rapidly growing population.

In addition to numerous care responsibilities, family caregivers are expected to navigate health systems and engage in healthcare management tasks on behalf of their persons living with dementia (PLWD). These challenging tasks pose additional difficulties for Black dementia caregivers. Due to the centuries-old, disadvantaged social history of Black Americans, several unique stressors, vulnerabilities, and resources have emerged which inform and affect Black dementia caregivers' experiences and well-being. Focus groups were held with Black caregivers (N = 19) from the United States to explore the unique experiences and perspectives of this population navigating the U.S. health system on behalf of their PLWD. Five overarching themes were constructed during thematic analysis: Forced Advocacy, Poor Provider Interaction, Payor Source Dictates Care, Discrimination, and Broken Health System. Black dementia caregivers unanimously concurred that the health system that they experience in America is "broken." Gaps in the health system can lead to people [as one caregiver passionately expressed] "falling between the cracks," in terms of care, services, and resources needed. Caregivers agreed that class, sex, utilizing public health insurance, and being a "person of color" contribute to their difficulties navigating the health system. Caregivers perceived being dismissed by providers, forcing them to advocate for both themselves and their PLWD. Healthcare providers and researchers can utilize these findings to improve the experiences and healthcare outcomes of Black persons living with dementia and their caregivers. Additionally, these findings can lead to the development of culturally tailored caregiver education programs., (© 2022 The American Geriatrics Society.)

Background: The population of persons living with dementia (PLWDs) is increasing, although mainstream dementia care quality is suboptimal., Purpose: To identify characteristics associated with: (1) PLWDs' neuropsychiatric symptoms and quality of life; and (2) distress from neuropsychiatric symptoms and well-being among their family caregivers (N = 49)., Methodology: Cross-sectional single-group examination of PLWD and caregivers when they enrolled into a nurse-led dementia-centered primary care clinic. Pearson correlations were run between characteristics of PLWD and caregiver and variables representing PLWD's neuropsychiatric symptoms and quality of life and their caregivers' well-being. Statistically significant correlations were reported via Cohen d statistics., Results: Caregivers' characteristics associated with higher distress from neuropsychiatric symptoms and diminished well-being included Black race, female gender, younger age, caring for a parent with dementia, and being employed. Characteristics of PLWD associated with caregivers' higher distress and diminished well-being included longer time since dementia onset, higher Charlson Comorbidity Index, and non-Alzheimer dementia. Caregivers' characteristics associated with higher neuropsychiatric symptom burden included Black race, female gender, younger age, caring for parent PLWD, and being employed. Characteristics of PLWDs associated with higher neuropsychiatric symptom burden included non-Alzheimer dementia, longer time since dementia onset, more comorbidities, and higher Charlson Comorbidity Index. Finally, a longer time since dementia onset was associated with PLWDs' lower quality of life., Conclusions: Black race, caring for caring for a parent with dementia, younger age, and being employed were characteristics linked to PLWDs' higher neuropsychiatric symptom burden and caregivers' diminished well-being., Implications: Clinicians must assess and intervene with unpaid caregivers who may not appear obviously distressed., Competing Interests: Competing interests: The authors report no conflicts of interest., (Copyright © 2022 American Association of Nurse Practitioners.)

"Testing Tele-Savvy" was a three-arm randomized controlled trial that recruited participants from four National Institute on Aging (NIA)-funded Alzheimer's Disease Centers with Emory University serving as the coordinating center. The enrollment process involved each center providing a list of eligible caregivers to the coordinating center to consent. Initially, the site proposed to recruit primarily African American caregivers generated a significant amount of referrals to the coordinating center, but a gap occurred in translating them into enrolled participants. To increase the enrollment rate, a "Handshake Protocol" was established, which included a warm handoff approach. During preset phone calls each week, the research site coordinator introduced potential participants to a culturally congruent co-investigator from the coordinating center who then completed the consent process. Within the first month of implementation, the team was 97% effective in meeting its goals. This protocol is an example of a successful, innovative approach to enrolling minority participants in multi-site clinical trials.

Training healthcare professionals with Design Thinking (DT) can support patient-centred care by recognizing patient/care provider needs through empathizing. This article explored the Design Thinking in improving clinical researchers' understanding of relatively unexplored and understudied dementia caregiving problems. Following the Double-Diamond, a Design Thinking process model, we conducted a series of workshops and invited family caregivers of patients with dementia as active participants to provide training to clinical researchers on Design Thinking. We then evaluated the benefit of the workshops in improving clinical researchers' understanding of the caregiving problem and solution space through pre- and post-surveys. Our findings revealed researchers' overall perception of Design Thinking, their clear insights on dementia caregivers' challenges, and speculating caregiver-specific interventions. Our paper contributed to the health design community by exploring the benefit of Design Thinking in understudied areas by 1) Recognizing urgent matters in healthcare, 2) Revealing implicit needs through collective expertise and knowledge exchange, and 3) Producing original health care research and contributions. We hope this study inspires and supports training healthcare researchers to advance dementia caregiving and healthcare research initiatives by adopting the Double-Diamond process model.

The Integrated Memory Care Clinic is a patient-centered medical home led by advanced practice RNs (APRNs) who provide dementia care and primary care simultaneously and continuously. We explored the experiences of 12 informal caregivers of persons living with dementia during their first year at the Clinic. Data were analyzed via directed content analysis. Caregivers described the Clinic as "the only place you should go to for dementia [care]." Caregivers felt a sense of belonging to the Clinic, valued APRNs' competence and staff's dedication, and round-the-clock telephone access to APRNs. Caregivers also acknowledged that "we're all out here swimming on our own." They expressed their sense of being overwhelmed and needing more services and medical and non-medical resources, and more prognostic information on dementia. Although the Clinic is beneficial for caregivers, caregiving demands exceed the supply of services and resources at the Clinic. [ Research in Gerontological Nursing, 14 (2), 69-78.].