Protocol for a telephonic mixed methods study to understand needs and find solutions for bereaved dementia caregivers.

INTRODUCTION: Most caregivers of people living with dementia will experience bereavement within 10 years, but study of and support for their needs rarely persists following the death of their care recipients. A single model that leverages theoretical insights as well as observation from lived experience might help identify who will have greater difficulty following dementia-related bereavement and suggest core mechanisms to target to relieve clinical and subclinical consequences. The millions of existing bereaved dementia caregivers likely have considerable insight into ways to improve experience. Rather than creating interventions from scratch, researchers might leverage those insights to more rapidly improve the lives of bereaved dementia caregivers. METHODS AND ANALYSIS: This study uses a transformative mixed methods approach to explore the needs of caregivers for individuals with Alzheimer's disease (AD) and AD-related dementias, incorporating both quantitative surveys (n=400) and qualitative semistructured interviews (n=45) across diverse subgroups. The study described in this protocol aims to quantitatively test a new model based on self-determination theory to help understand when and why bereaved dementia caregivers experience better and worse outcomes following bereavement. The study also aims to qualitatively explore the ways that bereaved dementia caregivers might meet their needs to inform future interventions. ETHICS AND DISSEMINATION: The study adheres to institutional guidelines, ensuring participant consent and minimising risks through verbal consent procedures and the removal of personal identifiers from survey responses. The study team will share findings widely through academic publications, conferences and targeted outreach to advocacy groups and healthcare professionals, while also providing concise summaries of results to participants and making them accessible through the lab's website.

Measuring Consumer-Reported Quality of Life Among Recipients of Publicly Funded Home- and Community-Based Services: Implications for Health Equity.

OBJECTIVES: Despite an increased policy focused on home- and community-based services (HCBS), little is known about their quality of life (QoL)-a key measure of person-centered care. This paper addresses this gap by measuring consumers' self-reported QoL and identifying factors associated with disparities in QoL. METHODS: We analyzed the 2015-2016 National Core Indicators-Aging and Disability survey for 3426 respondents in Minnesota, using factor analyses to identify latent QoL domains. Multivariable regression models identified predictors of QoL domains. RESULTS: Factor analyses identified three valid and reliable latent QoL domains: security, self-determination, and care experiences. Younger consumers with disabilities (versus consumers ≥65 years of age), minoritized racial/ethnic groups, consumers with hearing loss, without a spouse/domestic partner, and not living in consumer's own/family home reported significantly lower QoL in various domains (p < .001). DISCUSSION: Disparities in HCBS consumer-reported QoL exist, necessitating equitable reforms to improve HCBS quality for its increasingly diversified consumer base.

Efficacy of the residential care transition module: A telehealth intervention for dementia family caregivers of relatives living in residential long-term care settings.

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).

Exploring the conformational landscapes of protein kinases: perspectives from FRET and DEER.

Conformational changes of catalytically-important structural elements are a key feature of the regulation mechanisms of protein kinases and are important for dictating inhibitor binding modes and affinities. The lack of widely applicable methods for tracking kinase conformational changes in solution has hindered our understanding of kinase regulation and our ability to design conformationally selective inhibitors. Here we provide an overview of two recently developed methods that detect conformational changes of the regulatory activation loop and αC-helix of kinases and that yield complementary information about allosteric mechanisms. An intramolecular Förster resonance energy transfer-based approach provides a scalable platform for detecting and classifying structural changes in high-throughput, as well as quantifying ligand binding cooperativity, shedding light on the energetics governing allostery. The pulsed electron paramagnetic resonance technique double electron-electron resonance provides lower throughput but higher resolution information on structural changes that allows for unambiguous assignment of conformational states and quantification of population shifts. Together, these methods are shedding new light on kinase regulation and drug interactions and providing new routes for the identification of novel kinase inhibitors and allosteric modulators.

Evidence Map of Non-Pharmacological Dementia Care Partner Interventions Implemented in the US: Gaps and Impact Opportunities.

There are 200+ tested interventions for care partners (family, friends, and fictive kin) of people living with dementia (PLWD). But these interventions do not systematically cover relevant settings. Nor do these interventions affect all relevant outcomes that matter to people and healthcare systems. We present an evidence map of settings and outcomes from translated interventions to identify gaps. Of 190 studies identified, 31 unique interventions were retained in the evidence map. Identified setting gaps included studies set solely in hospitals/medical centers or set in multiple settings. Identified outcome gaps included interventions that improved care partner beliefs about providing care, care partner negative coping strategies, PLWD resources (e.g., social support), and PLWD coping strategies. Armed with an understanding of present gaps, we call on researchers to fill the identified gaps to ensure systematic coverage of settings and evaluation of outcomes that matter to people and healthcare systems.

Shared Activities as a Protective Factor Against Behavioral and Psychological Symptoms of Dementia and Caregiver Stress.

Background and Objectives: Most persons with dementia experience behavioral and psychological symptoms (BPSD). While there is evidence that structured activity programs can be beneficial for persons with dementia and their caregivers, it is not well understood how joint engagement in shared activities affects BPSD and caregiver stress. The purpose of this study was to examine the moderating effect of doing a shared activity on the BPSD and caregiver stress. Research Design and Methods: This study used an intensive longitudinal observational design in which caregivers completed baseline and once-a-day diary surveys for 21 days. Caregivers were asked whether they did a pleasant noncare activity with their relative, the presence of 8 BPSD, and their stress level. A moderation model in a structural equation model examined the relationship between these variables. Results: Our sample consisted of 453 caregivers (87.4% female, 51.4% non-Hispanic White, mean age 53 years [standard deviation {SD}: 14]) and person living with dementia whose mean age was 79 years (SD: 9). On days when the caregivers engaged in a shared activity together with person living with dementia, there was a significant decrease in the BPSD (estimate -0.038, standard error [SE] = 0.016, 95% confidence interval [CI]: -0.069, -0.007, p value = 0.018). The effects of engaging in a shared activity decreased the impact of caregiver stress by 0.052 (estimate -0.052, SE = 0.018, 95% CI: -0.087, -0.017, p value = 0.004). At the between-person level, no differences were found in BPSD across caregivers who engaged or did not engage in shared activities. Discussion and Implications: The results of our study indicate that doing a shared activity is associated with reduced BPSD among persons with dementia and may buffer the impact of caregiver stress on BPSD. Shared activities should be considered a key intervention component for dementia caregivers.

Advancing Gerontology through Exceptional Scholarship (AGES): a Mentorship Initiative for Early Career Faculty.

Mentorship is critical to supporting professional development and growth of new and emerging faculty members. Working with the Gerontological Society of America (GSA), we created the Advancing Gerontology through Exceptional Scholarship (AGES) Initiative as a mentorship model to promote productivity and peer support for new and early career faculty members. In this commentary, we highlight the AGES Program as a prototype to facilitate peer support, collective learning, and co-authorship opportunities to advance new and early career faculty members, especially in the field of aging. Moreover, we identify four crucial strategies that cultivated and refined our AGES Program including: i) ensuring flexibility to address mentee needs; ii) establishing check-ins and accountability to enhance productivity; iii) fostering peer support and collective learning; and iv) delivering motivational and educational activities. Drawing on our experience with the AGES Program, this commentary provides recommendations to support other groups looking to develop high-quality mentorship programs to support new and early career faculty members in academia.

Patterns of recombination in snakes reveal a tug-of-war between PRDM9 and promoter-like features.

In some mammals, notably humans, recombination occurs almost exclusively where the protein PRDM9 binds, whereas in vertebrates lacking an intact PRDM9, such as birds and canids, recombination rates are elevated near promoter-like features. To determine whether PRDM9 directs recombination in nonmammalian vertebrates, we focused on an exemplar species with a single, intact PRDM9 ortholog, the corn snake (Pantherophis guttatus). Analyzing historical recombination rates along the genome and crossovers in pedigrees, we found evidence that PRDM9 specifies the location of recombination events, but we also detected a separable effect of promoter-like features. These findings reveal that the uses of PRDM9 and promoter-like features need not be mutually exclusive and instead reflect a tug-of-war that is more even in some species than others.

Racial Differences in Nursing Home Quality of Life Among Residents Living With Alzheimer's Disease and Related Dementias.

ObjectivesAmong nursing home (NH) residents with Alzheimer's disease (AD) and AD-related dementias (AD/ADRD), racial/ethnic disparities in quality of care exist. However, little is known about quality of life (QoL). This study examines racial/ethnic differences in self-reported QoL among NH residents with AD/ADRD. Methods: Validated, in-person QoL surveys from 12,562 long-stay NH residents with AD/ADRD in Minnesota (2012-2015) were linked to Minimum Data Set assessments and facility characteristics. Hierarchical linear models assessed disparities in resident-reported mean QoL score (range, 0-100 points), adjusting for case-mix and facility factors. Results: Compared to White residents, racially/ethnically minoritized residents reported significantly lower total mean QoL scores (75.53 points vs. 80.34 points, p < .001). After adjustment for resident- and facility-level characteristics, significant racial/ethnic differences remained, with large disparities in food enjoyment, attention from staff, and engagement domains. Discussion: Policy changes and practice guidelines are needed to address racial/ethnic disparities in QoL of NH residents with AD/ADRD.

Using Hybrid Effectiveness Studies to Facilitate Implementation in Community-Based Settings: Three Case Studies in Dementia Care Research.

The pipeline from discovery to testing and then implementing evidence-based innovations in real-world contexts may take 2 decades or more to achieve. Implementation science innovations, such as hybrid studies that combine effectiveness and implementation research questions, may help to bridge the chasm between intervention testing and implementation in dementia care. This paper describes hybrid effectiveness studies and presents 3 examples of dementia care interventions conducted in various community-based settings. Studies that focus on outcomes and implementation processes simultaneously may result in a truncated and more efficient implementation pipeline, thereby providing older persons, their families, health care providers, and communities with the best evidence to improve quality of life and care more rapidly. We offer post-acute and long-term care researchers considerations related to study design, sampling, data collection, and analysis that they can apply to their own dementia and other chronic disease care investigations.

A Qualitative Analysis of Mechanisms of Benefit in the Residential Care Transition Module: A Telehealth Intervention for Caregivers of Relatives With Dementia Living in Residential Long-Term Care.

This study sought to determine the perceived benefits of the Residential Care Transition Module (RCTM), a novel multi-component, psychoeducational/psychosocial, telehealth intervention for caregivers of cognitively impaired relatives living in residential long-term care (RLTC). Few support programs exist for these caregivers. Determining the intervention's mechanisms of benefit will provide actionable clinical and research information regarding which key features aspects RLTC and public health agencies should offer their families. We conducted semi-structured interviews with 30 purposively selected participants randomly assigned to receive the RCTM. Additionally, an open-ended survey question solicited feedback at 4 (n = 90), 8 (n = 79), and 12 months (n = 77). Available qualitative data were analyzed for thematic content. Participants endorsed 9 mechanisms of benefit. Six mechanisms were related to RCTM content: education dementia progression and dementia behavior management, personalized resource provision, strategies for communication and engagement with the care recipient (CR) and others, management of multiple roles, and relaxation exercises. Three mechanisms were related to coaching: emotional support, knowledgeability, and being a neutral third party. Common benefits attributed to RCTM included improvement in mood, caregiving confidence, and communication and interactions with CR and others. Using qualitative data and analyses, we discovered the most valued aspects of the RCTM intervention. These mechanisms of benefit have not been described in the literature. Notably, we were unable to detect mechanisms of benefit in a separate analysis utilizing quantitative data. Findings emphasize the importance of including qualitative measures in intervention research and selecting quantitative measures that reflect the intervention's real effects, if any.

"I Have Accepted My Father's Death; I was not Sad but Relieved." Adaptive Grief Responses for Bereaved Dementia Family Caregivers: A Scoping Review.

This scoping review explores findings from the psychological and medical literature on the adaptive grieving experiences of bereaved dementia family caregivers and integrates what healthcare professionals can do to support bereaved dementia family caregivers transition into a post-death role. Bereaved dementia family caregivers are particularly susceptible to prolonged grief disorder post-death due to the protracted caregiving demands and progressive course of the illness. The mention of caregiver grief while the person with dementia is living is quite common in the literature; however, limited research focuses on the bereaved dementia family caregiver and the methods they use to grieve adaptively. Three overarching adaptive grieving themes emerged from the review: 1) social health, 2) emotional and spiritual fitness, and 3) reclaiming activities. Given the growing prevalence of bereaved family dementia caregivers, understanding how they might most adaptively grieve and experience the greatest possible well-being should be a top focus for research.

Down the Penrose stairs, or how selection for fewer recombination hotspots maintains their existence.

In many species, meiotic recombination events tend to occur in narrow intervals of the genome, known as hotspots. In humans and mice, double strand break (DSB) hotspot locations are determined by the DNA-binding specificity of the zinc finger array of the PRDM9 protein, which is rapidly evolving at residues in contact with DNA. Previous models explained this rapid evolution in terms of the need to restore PRDM9 binding sites lost to gene conversion over time, under the assumption that more PRDM9 binding always leads to more DSBs. This assumption, however, does not align with current evidence. Recent experimental work indicates that PRDM9 binding on both homologs facilitates DSB repair, and that the absence of sufficient symmetric binding disrupts meiosis. We therefore consider an alternative hypothesis: that rapid PRDM9 evolution is driven by the need to restore symmetric binding because of its role in coupling DSB formation and efficient repair. To this end, we model the evolution of PRDM9 from first principles: from its binding dynamics to the population genetic processes that govern the evolution of the zinc finger array and its binding sites. We show that the loss of a small number of strong binding sites leads to the use of a greater number of weaker ones, resulting in a sharp reduction in symmetric binding and favoring new PRDM9 alleles that restore the use of a smaller set of strong binding sites. This decrease, in turn, drives rapid PRDM9 evolutionary turnover. Our results therefore suggest that the advantage of new PRDM9 alleles is in limiting the number of binding sites used effectively, rather than in increasing net PRDM9 binding. By extension, our model suggests that the evolutionary advantage of hotspots may have been to increase the efficiency of DSB repair and/or homolog pairing.

Connecting Dementia Caregivers to Recommended Services: Care to Plan.

The current mixed methods, embedded study evaluated the use of an online tool (Care to Plan [CtP]) that generates tailored service and support recommendations for dementia caregivers as well as information that can connect dementia caregiver users to recommended resources. Forty-three dementia caregivers identified in a health care system were randomly assigned to receive either CtP or usual care. The embedded, mixed methods design resulted in no quantitative, direct evidence for CtP's efficacy. Qualitative data revealed important insights into facilitators of and barriers to CtP use. Qualitative data also demonstrated that CtP helped caregivers obtain a better awareness of their needs and experiences. Clinicians may find CtP useful as an initial tool to spur memory care/case management and facilitate conversations about caregivers' needs and resources to meet individualized challenges. [Journal of Gerontological Nursing, 49(10), 5-11.].

Healthcare Utilization and Advance Care Planning among Older Adults Across Cognitive Levels.

This study examined the impact of advance care planning (ACP) on healthcare utilization among older adults with normal cognition and impaired cognition/dementia. Using datasets from the Health and Retirement Study, we conducted a cross-sectional study on 17,698 participants aged 51 years and older. Our analyses included survey descriptive and logistic regression procedures. ACP measures included a living will and durable power of attorney for healthcare. Healthcare utilization was measured using the days spent in hospitals, hospice care, nursing homes, and home care. Of the participants, 77.8% had normal cognition, and 22% had impaired cognition/dementia. The proportion of impaired cognition/dementia was higher among racially minoritized participants, single/widowed participants, and those who lived alone and were less educated. The results showed that having an ACP was associated with longer stays in hospitals, nursing homes, and home healthcare in all participants.

Patterns of recombination in snakes reveal a tug of war between PRDM9 and promoter-like features.

In vertebrates, there are two known mechanisms by which meiotic recombination is directed to the genome: in humans, mice, and other mammals, recombination occurs almost exclusively where the protein PRDM9 binds, while in species lacking an intact PRDM9, such as birds and canids, recombination rates are elevated near promoter-like features. To test if PRDM9 also directs recombination in non-mammalian vertebrates, we focused on an exemplar species, the corn snake (Pantherophis guttatus). Unlike birds, this species possesses a single, intact PRDM9 ortholog. By inferring historical recombination rates along the genome from patterns of linkage disequilibrium and identifying crossovers in pedigrees, we found that PRDM9 specifies the location of recombination events outside of mammals. However, we also detected an independent effect of promoter-like features on recombination, which is more pronounced on macro- than microchromosomes. Thus, our findings reveal that the uses of PRDM9 and promoter-like features are not mutually-exclusive, and instead reflect a tug of war, which varies in strength along the genome and is more lopsided in some species than others.

Simultaneously Developing Interventions for Low-/Middle-Income and High-Income Settings: Considerations and Opportunities.

Most older adults reside in low- and middle-income countries (LMICs) but most research dollars spent on interventions to improve the lives of older adults are awarded to researchers in high-income countries (HICs). One approach to improve the implementation of evidence-based innovations for older adults in LMICs is designing interventions that are relevant to LMICs and HICs simultaneously. We propose that researchers in HICs could partner with stakeholders in an LMIC throughout the intervention design process to better position their intervention for the implementation in that LMIC. We provide an example study from an adaptation of the Resources for Enhancing Caregiver Health II in Vietnam, which did not use this strategy but may have benefited from this strategy. We then turn to several considerations that are important for researchers to contemplate when incorporating this strategy. Finally, we explore incentives for creating interventions that are relevant to both HICs and LMICs for funders, intervention designers, and intervention receivers. Although this is not the only strategy to bring interventions to LMICs, it may represent another tool in researchers' toolboxes to help expedite the implementation of efficacious interventions in LMICs.

The Basic Psychological Need Satisfaction and Frustration Scales probably do not validly measure need frustration.

In basic psychological needs theory (BPNT), the separable constructs of need satisfaction and need frustration are theorized as pivotally related to psychopathology and broader aspects of well-being. The Basic Psychological Need Satisfaction and Frustration Scales (BPNSFS; Chen et al., 2015) have rapidly emerged as the dominant self-report measure in the BPNT domain, with translated versions available in a wide range of languages and a plethora of versions adapted for specific populations and life contexts. Through (a) an extended conceptual discussion of the BPNSFS and (b) a collection of complementary data analyses in eight samples, we demonstrate that the BPNSFS probably does not validly measure need frustration. Most importantly, we conclude that the ostensible distinction between need frustration and need satisfaction in the BPNSFS is likely primarily a method artifact caused by different item keying directions, given the way the measure currently assesses the intended constructs. If so, then the use of the BPNSFS may be generating misleading conclusions, obstructing sound investigation of current BPNT. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Depressive Symptoms in Older African Immigrants with Mobility Limitations: A Descriptive Study.

OBJECTIVES: Before, during, and after their immigration to the United States, immigrants face stressful life circumstances that may render them at risk for depressive symptoms. However, there is a dearth of research on the mental health of African immigrants. We performed secondary data analyses of two studies in the Baltimore-Washington area to describe and identify correlates of depressive symptoms in older African immigrants. METHODS: Chi square tests, one-way ANOVAs, and linear regressions were used to describe and examine associations between depressive symptoms and immigrant-related risk factors. RESULTS: This sample included 148 participants who had a mean age of 62 (SD ± 8.2). Clinical depressive symptoms were present in 8.1% of participants, and trouble falling asleep for more than half of the days was the most prevalent symptom (20%). Levels of education, income, and migration reasons differed significantly from clinical depressive symptoms, but these were not significantly associated with more depressive symptoms after controlling for covariates. CONCLUSIONS: Longitudinal designs may further elucidate incidence, correlates, and long-term effects of depressive symptoms within this population. CLINICAL IMPLICATIONS: Knowledge of depressive symptom burden and risk factors can inform timely assessment, referral, and treatment of depressive symptoms and other mental health outcomes in older African immigrants.

Age Differences in Determinants of Self-Rated Health among Recipients of Publicly Funded Home-and-Community-Based Services.

This research examined determinants of self-rated health (SRH) of publicly funded home-and-community-based services (HCBS) recipients and tested if the effects of determinants differ between older recipients and younger recipients with disabilities. Using Minnesota's data of 2015-2016 National Core Indicators - Aging and Disabilities survey (n = 3,426), this study revealed that functional status and community inclusion had both direct and indirect effects on SRH, with negative mood as a mediator. Community inclusion had a more pronounced effect on SRH in younger recipients than in older recipients. HCBS should address psychosocial needs and be tailored for recipients of different age groups.