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.

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.

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.

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.

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.

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.

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.

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).

Delivering Personalized Recommendations to Support Caregivers of People Living With Dementia: Mixed Methods Study.

BACKGROUND: Estimates suggest that 6.2 million Americans aged ≥65 years are living with Alzheimer dementia in 2021, and by 2060, this number could more than double to 13.8 million. As a result, public health officials anticipate a greater need for caregivers of persons with Alzheimer disease or related dementia and support resources for both people living with dementia and their caregivers. Despite the growing need for dementia caregiver support services, there is a lack of consensus regarding how to tailor these services to best meet the heterogeneous needs of individual caregivers. To fill this gap, Care to Plan (CtP), a web-based tool for caregivers of people living with dementia, was developed to provide tailored support recommendations to dementia caregivers. OBJECTIVE: The aim of this study is to formally explore the feasibility, acceptability, and utility of CtP for 20 family members of people living with dementia within a health system over a 1-month time period using a mixed methods parallel convergent design. METHODS: A moderately sized health system in the mid-Atlantic region was selected as the site for CtP implementation, where 20 caregivers who were family members of people living with dementia were enrolled. The web-based CtP tool was used by caregivers and facilitated by a health care professional (ie, a senior care navigator [SCN]). Caregivers were given a 21-item review checklist to assess barriers and facilitators associated with reviewing CtP with an SCN. Following the 21-item review checklist, semistructured telephone interviews, which included 18 open-ended questions, focused on the facilitators of and barriers to CtP implementation and recommendations for future implementation. RESULTS: Quantitative results suggested that 85% (17/20) of caregivers indicated that CtP was helpful and 90% (18/20) would recommend CtP to someone in a similar situation. The qualitative analysis identified 4 themes regarding facilitators of and barriers to implementation: caregiver factors, SCN factors, CtP tool system factors, and recommendations and resources factors. CONCLUSIONS: CtP was found to be not only feasible but also a valuable tool for caregivers seeking resources for themselves and their people living with dementia. Long-term evaluation findings aim to generate results on how CtP can be integrated into care plans for caregivers and how SCNs can provide additional support for caregivers of people living with dementia over an extended period.

Open science in dementia care embedded pragmatic clinical trials.

Few dementia care interventions have been translated to healthcare contexts for those who need them. Embedded pragmatic clinical trials (ePCTs) are one design that can expedite the timeframe of research translation to clinical practice. As the National Institutes of Health (NIH) and other funders commit immense new resources to increasing the nation's capacity to conduct dementia care ePCTs, we call on psychologists to employ their extensive expertise in open science to improve the quality of dementia care ePCTs. This article provides several recommendations to enhance the transparency and reporting rigor of ePCTs in dementia care and other chronic disease contexts. We illustrate these recommendations in the context of a recent pilot pragmatic trial known as the Porchlight Project. Porchlight provided training to volunteers who serve clients and caregivers to help them provide more "dementia capable" support. Notably this trial did not include a special effort to make use of open science practices. We discuss the benefits and costs had the Porchlight Project incorporated open science principles. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Association Between Fear of Pain and Sports-Related Concussion Recovery in a Pediatric Population.

OBJECTIVE: To determine whether an association exists between fear of pain and recovery time from sports-related concussion in a pediatric population. DESIGN: Prospective observational study. SETTING: Primary outpatient sports medicine clinic of a large pediatric hospital. PATIENTS: One hundred twenty-eight pediatric patients aged 8 to 18 years who presented to clinic with a primary diagnosis of concussion from September 2018 to March 2020. Inclusion criteria included presentation within 2 weeks of injury and symptomatic on initial visit. Patients who sustained a concussion because of motor vehicle collisions or assault were excluded. INDEPENDENT VARIABLES: There was no intervention. Study participants who met inclusion criteria were administered the Fear of Pain Questionnaire (FOPQ) at their initial visit. MAIN OUTCOME MEASURES: Time to clinical recovery was the main outcome measure and was determined by the fellowship-trained sports medicine physician based on resolution of concussion symptoms, resumption of normal physical and cognitive daily activities, no use of accommodations or medications, and normalization of physical exam. RESULTS: There was a significant difference in FOPQ scores for those with prolonged recovery (M = 33.12, SD = 18.36) compared with those recovering in fewer than 28 days (M = 26.16, SD = 18.44; t [126] = -2.18, P = 0.036). CONCLUSIONS: Consistent with the adult literature, we found that pediatric patients are more likely to have a prolonged recovery from concussion when they have higher fear of pain.

"We Moved Her Too Soon": Navigating Guilt Among Adult Child and Spousal Caregivers of Persons Living with Dementia Following a Move into Residential Long-Term Care.

Guilt is a complex and multifaceted emotion navigated by many family caregivers. Guilt is sometimes experienced following a transition into a residential long-term care facility, even when the move is necessary given high care needs related to Alzheimer's disease and related dementias. This mixed methods study identifies and compares areas of guilt most frequently experienced by spouse and adult child caregivers (N=83) of a family member with dementia following transition into residential long-term care. Nearly half of caregivers reported experiencing guilt from their care recipient, other family members, or facility staff. Quantitative analyses explored variables that predict heightened feelings of guilt, and qualitative thematic analyses provided rich insight into subjective experiences of guilt. Person-specific and situational characteristics influenced caregiver guilt, including level of involvement in care, frequency and quality of visits, and perceptions of the residential long-term care facility. We identify specific opportunities for tailored couple and family psychology interventions including communication strategies, decision-making approaches, focusing on positives, psychoeducation, self-forgiveness exercises, stress management and self-care activities, and validation. The present work informs how counseling interventions can provide practical support by highlighting specific clinical mechanisms that help to alleviate common facets of caregiver guilt following a transition into residential long-term care. Critically, we distinguish variation between spouses and adult children to design treatment plans that best support clients who are caring for a person living with dementia in residential long-term care.

Remote activity monitoring for family caregivers of persons living with dementia: a mixed methods, randomized controlled evaluation.

BACKGROUND: The goal of the present study was to determine whether a remote activity monitoring (RAM) system benefited caregivers who aided relatives with Alzheimer's disease or related dementias (ADRD) living at home. We hypothesized that over 18 months, families randomly assigned to receive RAM technology in the home of the person with ADRD would experience statistically significant (p < .05): 1) improvements in caregiver self-efficacy and sense of competence when managing their relative's dementia; and 2) reductions in caregiver distress (e.g., burden, role captivity, and depression). METHODS: An embedded mixed methods design was utilized, where 179 dementia caregivers were randomly assigned to receive RAM or not. Caregivers were surveyed bi-annually over an 18-month period to collect quantitative and qualitative data on RAM's effects. Semi-structured interviews with 30 caregivers were completed following the 18-month data collection period to explore more in-depth how and why RAM was perceived as helpful or not. RESULTS: Growth curve models showed no direct or moderation effect of RAM on dementia caregiver outcomes. The qualitative data revealed a complex utilization process of RAM influenced by the care environment/context as well as the temporal progression of ADRD and the caregiving trajectory. CONCLUSIONS: The findings suggest the need for developing more effective mechanisms to match appropriate technologies with the heterogeneous needs and care contexts of people living with ADRD and their caregivers. A triadic approach that incorporates professional care management alongside passive monitoring systems such as RAM may also enhance potential benefits. TRIAL REGISTRATION: ClinicalTrials.gov NCT03665909 , retrospectively registered on 11 Sept 2018.

Longitudinal Comparison of Stability and Sensitivity in Quality of Life Scores Among Nursing Home Residents With and Without Diagnoses of Alzheimer's Disease and Related Dementias.

BACKGROUND AND OBJECTIVES: Prevalence of nursing home residents with Alzheimer's disease and related dementias (ADRD) has increased along with a growing consensus that person-centered ADRD care in nursing homes should maximize quality of life (QoL). However, concerns about whether residents with ADRD can make appropriate QoL judgments persist. This study assesses the stability and sensitivity of a self-reported, multidomain well-being QoL measure for nursing home residents with and without ADRD. RESEARCH DESIGN AND METHODS: This study linked the 2012-2015 Minnesota Nursing Home Resident QoL and Satisfaction with Care Survey, Minimum Data Set 3.0 (nursing home assessments), and Minnesota Department of Human Services Cost Reports. The QoL survey included cohort-resident pairs who participated for 2 consecutive years (N = 12 949; 8 803 unique residents from 2012-2013, 2013-2014, and 2014-2015 cohorts). Change in QoL between 2 years was conceptualized as stable when within 1.5 SD of the sample average. We used linear probability models to estimate associations of ADRD/Cognitive Function Scale status with the stability of QoL summary and domain scores (eg, social engagement) and the absolute change in QoL summary score, controlling for resident and facility characteristics. RESULTS: Most (86.82%) residents had stable QoL summary scores. Residents with moderate to severe cognitive impairment, irrespective of ADRD, were less likely to have stable summary scores than cognitively capable residents without ADRD (p < .001), but associations varied by QoL domains. Among those with stable summary QoL scores, changes in health/functional status were associated with absolute changes in summary QoL score (p < .001), suggesting sensitivity of the QoL measure. DISCUSSION AND IMPLICATIONS: QoL scores were similarly stable over time for most residents with and without ADRD diagnoses and were sensitive to changes in health/functional status. This self-reported QoL measure may be appropriate for nursing home residents, regardless of ADRD diagnosis, and can efficaciously be recommended to other states.

Machine learning uncovers the most robust self-report predictors of relationship quality across 43 longitudinal couples studies.

Given the powerful implications of relationship quality for health and well-being, a central mission of relationship science is explaining why some romantic relationships thrive more than others. This large-scale project used machine learning (i.e., Random Forests) to 1) quantify the extent to which relationship quality is predictable and 2) identify which constructs reliably predict relationship quality. Across 43 dyadic longitudinal datasets from 29 laboratories, the top relationship-specific predictors of relationship quality were perceived-partner commitment, appreciation, sexual satisfaction, perceived-partner satisfaction, and conflict. The top individual-difference predictors were life satisfaction, negative affect, depression, attachment avoidance, and attachment anxiety. Overall, relationship-specific variables predicted up to 45% of variance at baseline, and up to 18% of variance at the end of each study. Individual differences also performed well (21% and 12%, respectively). Actor-reported variables (i.e., own relationship-specific and individual-difference variables) predicted two to four times more variance than partner-reported variables (i.e., the partner's ratings on those variables). Importantly, individual differences and partner reports had no predictive effects beyond actor-reported relationship-specific variables alone. These findings imply that the sum of all individual differences and partner experiences exert their influence on relationship quality via a person's own relationship-specific experiences, and effects due to moderation by individual differences and moderation by partner-reports may be quite small. Finally, relationship-quality change (i.e., increases or decreases in relationship quality over the course of a study) was largely unpredictable from any combination of self-report variables. This collective effort should guide future models of relationships.