Preferences and Quality of Life in Nursing Home Residents: A Mixed Methods Study.

PURPOSE: Delivery of person-centered care (PCC) is the standard in nursing homes (NHs) and demonstrates a positive impact on resident quality of life (QOL). PCC inherently recognizes and prioritizes resident preferences; however, preferences, and their degree of importance among residents, demonstrate a variable relationship with QOL that remains underexplored. Therefore, the current study examined the association between preferences and QOL among NH residents. METHOD: A mixed methods study incorporating surveys was conducted among 144 residents, with semi-structured follow-up interviews with 11 residents. RESULTS: Findings confirm a variable relationship between resident preferences and QOL. Higher order preferences not captured within the preference assessment may influence QOL. High numbers of unimportant and can't do/no choice preferences were linked to resident acclimatization to the NH. QOL was at risk if care was not consistent with preferences. CONCLUSION: In-depth assessments and robust measures of preferences and QOL should be integrated into care delivery and future research. [Journal of Gerontological Nursing, 50(5), 7-13.].

The Impact of Episodes of Lucidity on People Living With Dementia and Their Caregivers: A Case Report.

People living with dementia (PLWD) may experience the episodes of lucidity (ELs), defined as a sudden return of abilities presumed to have been lost and presenting as meaningful communication and connection. Early research on ELs in advanced disease stages suggests these are predominantly positive events. This case report draws from 1 outlier case from a descriptive qualitative study on caregivers of PLWDs' experiences with ELs. The caregiver-reported events perceived as an EL being accompanied with unexpected self-awareness, leading to a negative emotional reaction and feelings of loss. This case report contributes insights to the current understandings of ELs as exclusively relevant in advanced stages of dementia, as similar events may present in earlier disease stages, and may be associated with the negative emotional experiences among PLWD. Future research is needed to consider the ethical implications surrounding ELs and to support the caregivers in anticipating and responding to ELs.

Implementing six multi-month dispensing of antiretroviral therapy in Ethiopia: perspectives of clients and healthcare workers.

BACKGROUND: Multi-month dispensing (MMD) of antiretroviral therapy (ART) is an integral component of differentiated HIV service delivery for people living with HIV (PLHIV). Although many countries have scaled up ART dispensing to 3-month intervals, Ethiopia was the first African country to implement six-month dispensing (6-MMD) at scale, introducing its Appointment Spacing Model (ASM) for people doing well on ART in 2017. As of June 2021, 51.4% (n = 215,101) of PLHIV on ART aged ≥ 15 years had enrolled in ASM. Since little is known about the benefits and challenges of ASM perceived by Ethiopian clients and their healthcare workers (HCWs), we explored how the ASM was being implemented in Ethiopia's Oromia region in September 2019. METHODS: Using a parallel convergent mixed-methods study design, we conducted 6 focus groups with ASM-eligible enrolled clients, 6 with ASM-eligible non-enrolled clients, and 22 in-depth interviews with HCWs. Data were audio-recorded, transcribed and translated into English. We used thematic analysis, initially coding deductively, followed by inductive coding of themes that emerged from the data, and compared the perspectives of ASM-enrolled and non-enrolled clients and their HCWs. RESULTS: Participants enrolled in ASM and HCWs perceived client-level ASM benefits to include time and cost-savings, fewer work disruptions, reduced stigma due to fewer clinic visits, better medication adherence and improved overall health. Perceived health system-level benefits included improved quality of care, decongested facilities, reduced provider workloads, and improved record-keeping. Although non-enrolled participants anticipated many of the same benefits, their reasons for non-enrollment included medication storage challenges, concerns over less frequent health monitoring, and increased stress due to the large quantities of medicines dispensed. Enrolled participants and HCWs identified similar challenges, including client misunderstandings about ASM and initial ART stock-outs. CONCLUSIONS: ASM with 6-MMD was perceived to have marked benefits for clients and health systems. Clients enrolled in the ASM and their HCWs had positive experiences with the model, including perceived improvements in efficiency, quality and convenience of HIV treatment services. The concerns of non-ASM enrolled participants suggest the need for enhanced client education about the model and more discreet and efficiently packaged ART and highlight that ASM is not ideal for all clients.

Policies Shaping Nursing Home Medication Practices: Involving Nurses to Advance Individualized Deprescribing.

Deprescribing is a common practice in the care of older adults, including those living in nursing homes (NHs). Deprescribing represents an individualized approach to optimizing medication use; it considers the risks, benefits, and goals of an individual, and can mitigate the effects of polypharmacy and potentially inappropriate medications. In NH settings, prescribing practices are shaped directly and indirectly by historical and contemporaneous policies at federal, state, and local levels, which have primarily targeted chemical restraints and unnecessary medications. Understanding these policies, their impact, and potentially unintended consequences is essential for gerontological nursing to transition toward individualized practices and approaches to deprescribing. [Journal of Gerontological Nursing, 49(9), 15-20.].

Written discharge communication of diagnostic and decision-making information for persons living with dementia during hospital to skilled nursing facility transitions.

Hospital-to-skilled nursing facility (SNF) transitions constitute a vulnerable point in care for people with dementia and often precede important care decisions. These decisions necessitate accurate diagnostic/decision-making information, including dementia diagnosis, power of attorney for health care (POAHC), and code status; however, inter-setting communication during hospital-to-SNF transitions is suboptimal. This retrospective cohort study examined omissions of diagnostic/decision-making information in written discharge communication during hospital-to-SNF transitions. Omission rates were 22% for dementia diagnosis, 82% and 88% for POAHC and POAHC activation respectively, and 70% for code status. Findings highlight the need to clarify and intervene upon causes of hospital-to-SNF communication gaps.

Rheumatology Clinic Staff Needs: Barriers and Strategies to Addressing High Blood Pressure and Smoking Risk.

OBJECTIVE: Patients with rheumatologic conditions are at elevated risk of cardiovascular disease (CVD) due to inflammatory and traditional risk factors, such as high blood pressure (BP) and smoking. However, rheumatology clinics rarely address traditional risk factors, although they are routinely assessed and modifiable in primary care. The present study sought to (1) characterize rheumatology clinic staff's work process for addressing high BP and smoking and (2) identify barriers and strategies for effective management of these risk factors. METHODS: We conducted 7 focus groups with medical assistants, nurses, and scheduling staff from 4 adult rheumatology clinics across 2 health systems (BP focus groups, n = 23; smoking, n = 20). Transcripts were analyzed using thematic analysis to elucidate barriers and strategies. RESULTS: We found 3 clinic work processes for the management of high BP and smoking risk: (1) risk identification, (2) follow-up within the clinic, and (3) follow-up with primary care and community resources. Within these processes, we identified barriers and strategies grouped into themes: (1) time, (2) clinic workflows, (3) technology and resources, (4) staff's attitudes and knowledge, and (5) staff's perceptions of patients. The most pervasive barriers were (1) no structured system for follow-up and (2) staff confidence and skill in initiating conversations about health-related behavior change. CONCLUSIONS: Our study identified generalizable gaps in rheumatology staff's work processes and competencies for addressing high BP and smoking in patients. Future efforts to support staff needs should target (1) systems for follow-up within and outside the clinic and (2) conversation support tools.

Tailoring Research Recruitment for Acute Care Settings: Recommendations from People with Dementia and their Caregivers.

BACKGROUND: There is a pressing need to increase enrollment and representation in Alzheimer's disease and related dementia (ADRD) research. Current recruitment approaches focus largely on clinic and community settings, with minimal engagement of acute care environments despite their broad use across diverse populations. The objectives of this study were to examine views, preferences, and recommendations regarding acute care-based ADRD research recruitment among persons with dementia and their caregivers. METHODS: The authors conducted semistructured interviews with recently hospitalized persons with dementia (N=3) and family caregivers (N=28). Interviews were analyzed using thematic analysis. FINDINGS: All participants endorsed acute care as an appropriate time for recruitment into ADRD research studies and identified important elements of an appropriately tailored recruitment approach and an interpersonally effective research staff. Participants emphasized that this approach should consider the acute care context with respect to participant situation, uncertainty, and timing. Participant suggestions informed the design of a 5-step process to guide ADRD research recruitment in the context of acute care. DISCUSSION: Findings provide valuable insights from people with dementia and their caregivers regarding opportunities for research engagement surrounding acute care and can inform expanded recruitment in these settings.

Discharge Communication of Dementia-Related Neuropsychiatric Symptoms and Care Management Strategies During Hospital to Skilled Nursing Facility Transitions.

Provided the complexity of managing dementia-related neuropsychiatric symptoms (NPS), accurate communication about these symptoms at hospital discharge is critical to facilitating safe and effective transitions, particularly transitions from hospitals to skilled nursing facilities (SNF), which are often poorly managed. Skilled nursing facilities providers have cited undercommunication regarding NPS as a major challenge that contributes to poor outcomes including rehospitalization. This multisite retrospective cohort study identified omission rates for NPS and associated management strategies in discharge communication as compared to medical record documentation in the 72 hours preceding discharge among hospitalized patients with dementia. High rates of omission were found across NPS and management strategies: anxiety (94%), agitation/aggression (77%), hallucinations (85%), 1:1 supervision (90%), high fall risk (89%), use of restraints (91%). Omission rate for new or modified antipsychotic medication was 12.9%. Findings underscore the need for additional research on cross-setting communication regarding care needs of patients with dementia-who often cannot communicate these needs on their own-in facilitating high-quality transitions.

Implementation and Evaluation of an Acute Care Multicomponent Intervention for Dementia-Related Behavioral Expressions.

Despite the high prevalence and negative outcomes associated with poorly managed dementia-related behavioral expressions (BE) during hospitalization, evidence-based interventions for BE management in acute care environments are lacking. To address this gap, we designed, implemented, and evaluated feasibility, utility, and exploratory nurse and patient outcomes associated with a low-cost, nurse-led multicomponent decision support intervention-the Personalized Approach and Targeted Interventions (PROACTIVE) Treatment Approach-which was implemented as a quality improvement program and evaluated with a historical matched comparison group. The intervention was feasibly implemented and improved nurse-sensitive outcomes (stress, confidence), practices (use of nonpharmacological approaches) for BE management, and perceived utility of intervention resources. Patients receiving the PROACTIVE Treatment Approach (N = 40) had higher rates of acetaminophen use, and shorter lengths of stay (N = 40). More rigorous evaluation is needed to better determine optimal implementation strategies and intervention impact. [Journal of Gerontological Nursing, 47(9), 21-30.].

Exploring dementia family caregivers' everyday use and appraisal of technological supports.

Family caregivers provide the majority of care for people with dementia, often balancing multiple caregiving roles. Technology-based interventions have demonstrated strong potential for supporting family caregivers in navigating these roles, yet translational uptake of these interventions remains limited. A comprehensive understanding of how caregivers engage and evaluate everyday technological supports is necessary to foster broader adoption. Through semi-structured interviews with 20 caregivers, the present study aimed to explore caregivers' everyday use and appraisal of technological supports. We found that caregivers use specific technological supports to meet specific caregiving needs (e.g. coordination, information seeking, direct care), and exhibit unique technology use patterns (e.g. trial-and-error) shaped by the caregiving need. Caregivers shared positive appraisals of technological supports for caregiving, citing the role of perceived utility, existing familiarity, and social resources in their acceptance and uptake. These findings illustrate important perspectives regarding everyday technology with immediate relevance for intervention design and functionality.

The genetic and environmental etiology of child maltreatment in a parent-based extended family design.

Child maltreatment has been associated with various cumulative risk factors. However, little is known about the extent to which genetic and environmental factors contribute to individual differences between parents in perpetrating child maltreatment. To estimate the relative contribution of genetic and environmental factors to perpetrating maltreatment we used a parent-based extended family design. Child-reported perpetrated maltreatment was available for 556 parents (283 women) from 63 families. To explore reporter effects (i.e., child perspective on maltreatment), child reports were compared to multi-informant reports. Based on polygenic model analyses, most of the variance related to the perpetration of physical abuse and emotional neglect was explained by common environmental factors (physical abuse: c2 = 59%, SE = 12%, p = .006; emotional neglect: c2 = 47%, SE = 8%, p < .001) whereas genetic factors did not significantly contribute to the model. For perpetrated emotional abuse, in contrast, genetic factors did significantly contribute to perpetrated emotional abuse (h2 = 33%, SE = 8%, p < .001), whereas common environment factors did not. Multi-informant reports led to similar estimates of genetic and common environmental effects on all measures except for emotional abuse, where a multi-informant approach yielded higher estimates of the common environmental effects. Overall, estimates of unique environment, including measurement error, were lower using multi-informant reports. In conclusion, our findings suggest that genetic pathways play a significant role in perpetrating emotional abuse, while physical abuse and emotional neglect are transmitted primarily through common environmental factors. These findings imply that interventions may need to target different mechanisms dependings on maltreatment type.

Parents' experiences of childhood abuse and neglect are differentially associated with behavioral and autonomic responses to their offspring.

Although childhood maltreatment has been shown to compromise adaptive parental behavior, little is known what happens in terms of physiological regulation when parents with a history of childhood maltreatment interact with their offspring. Using a sample of 229 parents (131 women), the present study examined whether childhood maltreatment experiences are associated with parents' behavioral and autonomic responses while resolving conflict with their offspring. Self-reported experienced child maltreatment was measured using a questionnaire assessing abuse and neglect. Parents (Mage  = 52.7 years, rangeage  = 26.6-88.4 years) and their offspring (Mage  = 24.6 years, rangeage  = 7.5-65.6 years) participated in a videotaped parent-offspring conflict interaction task. Parental warmth, negativity, and emotional support were coded. In addition, their pre-ejection period and respiratory sinus arrhythmia were measured as indicators of underlying sympathetic and parasympathetic nervous system reactivity, respectively. Findings demonstrated that experiences of abuse and neglect were associated with behavioral and physiological responses in different ways. Separating these two types of maltreatment in research and in clinical practice might be important.

Symptoms of apathy and passivity in dementia: A simultaneous concept analysis.

AIMS AND OBJECTIVES: The objective of this analysis was to clarify the concepts of apathy and passivity in the context of dementia by identifying distinguishing and overlapping attributes for both concepts simultaneously. BACKGROUND: Apathy is among the most common and persistent symptoms in dementia. The concept of apathy is often used interchangeably with passivity. Understanding similarities and differences between these concepts is of critical importance in clarifying clinical diagnostic criteria, developing consistent measurement in research and translating research evidence into nursing practice. DESIGN: A systematic literature search of multiple databases identified relevant articles for review. A modified combination of Haase et al.'s simultaneous concept analysis method and Morses' principle-based concept analysis using qualitative content and thematic analysis procedures was applied to identify overlapping and distinguishing attributes. METHODS: A search of PubMed, CINAHL and PsycINFO databases identified 176 articles meeting inclusion criteria. The concepts of apathy and passivity were characterised using a standardised manual to identify attributes of definitions (conceptual and operational), related conditions, functional, behavioural and neurobiological correlates, antecedents and consequences. Thematic analysis identified common themes across each category which were tabulated and entered into comparative matrices to identify overlapping and distinguishing features. RESULTS: There is considerable overlap across attributes of apathy and passivity. Apathy is distinguished as a clinical syndrome characterised by loss of motivation not due to emotional distress or cognitive impairment. Passivity is distinguished as a lack of interaction between the individual and environment in the context of cognitive impairment. CONCLUSION: In contrast to passivity, apathy is a more robustly defined concept focused on motivational limitations within the individual associated with specific neuroanatomical deficits. RELEVANCE TO CLINICAL PRACTICE: The identification of key distinguishing features of apathy and passivity in dementia is a critical first step in ensuring consistent measurement of each concept.

Attachment representations and autonomic regulation in maltreating and nonmaltreating mothers.

This study assessed attachment representation and attachment-related autonomic regulation in a sample of 38 maltreating and 35 nonmaltreating mothers. Mothers' state of mind regarding attachment was measured using the Adult Attachment Interview. They further watched an attachment-based comfort paradigm, during which we measured skin conductance and vagal tone. More maltreating mothers (42%) than nonmaltreating mothers (17%) had an unresolved/disoriented attachment classification. Attachment representation was related to physiology during the comfort paradigm: an unresolved state of mind and a nonautonomous classification were associated with a decrease in skin conductance during the comfort paradigm, specifically during the responsive caregiver scenario. However, physiology did not differ between maltreating and nonmaltreating mothers. The decrease in skin conductance of unresolved mothers during the comfort paradigm might be indicative of a deactivating response, which is congruent with the dissociative nature of the unresolved state of mind. The results point to the potential utility of interventions focused on attachment representations for maltreating mothers.

Salivary α-Amylase Reactivity to Infant Crying in Maltreating Mothers.

Deviant physiological reactivity to infant stimuli has been suggested to underlie maladaptive parenting behavior. Our study involved 44 maltreating and 42 non-maltreating mothers. During a standardized cry paradigm, mothers listened to nine cry sounds of varying pitches. Saliva was collected at baseline, after each cry sound, and after a recovery episode. Salivary α-amylase (sAA) as a marker of autonomic nervous system (ANS) activity was assayed from saliva samples. Maltreating mothers showed lower overall sAA levels and an attenuated reactivity pattern to infant crying as compared to non-maltreating mothers. No effect of type of maltreatment (neglect only vs. neglect and abuse) was found. Furthermore, positive correlations between sAA and heart rate (HR) for non-maltreating mothers differed significantly from non-significant correlations between sAA and HR for maltreating mothers. This suggests anomalous asynchrony between different aspects of the ANS in maltreating mothers. Results indicate a lack of functional autonomic (re)activity as a contributing risk factor to child maltreatment.

The role of emotion recognition in the intergenerational transmission of child maltreatment: A multigenerational family study.

BACKGROUND: Understanding how child maltreatment is passed down from one generation to the next is crucial for the development of intervention and prevention strategies that may break the cycle of child maltreatment. Changes in emotion recognition due to childhood maltreatment have repeatedly been found, and may underly the intergenerational transmission of child maltreatment. OBJECTIVE: In this study we, therefore, examined whether the ability to recognize emotions plays a role in the intergenerational transmission of child abuse and neglect. PARTICIPANTS AND SETTING: A total of 250 parents (104 males, 146 females) were included that participated in a three-generation family study. METHOD: Participants completed an emotion recognition task in which they were presented with series of photographs that depicted the unfolding of facial expressions from neutrality to the peak emotions anger, fear, happiness, and sadness. Multi-informant measures were used to examine experienced and perpetrated child maltreatment. RESULTS: A history of abuse, but not neglect, predicted a shorter reaction time to identify fear and anger. In addition, parents who showed higher levels of neglectful behavior made more errors in identifying fear, whereas parents who showed higher levels of abusive behavior made more errors in identifying anger. Emotion recognition did not mediate the association between experienced and perpetrated child maltreatment. CONCLUSIONS: Findings highlight the importance of distinguishing between abuse and neglect when investigating the precursors and sequalae of child maltreatment. In addition, the effectiveness of interventions that aim to break the cycle of abuse and neglect could be improved by better addressing the specific problems with emotion processing of abusive and neglectful parents.

Disparities in 30-day readmission rates among Medicare enrollees with dementia.

BACKGROUND: Readmissions contribute to excessive care costs and burden for people living with dementia. Assessments of racial disparities in readmissions among dementia populations are lacking, and the role of social and geographic risk factors such as individual-level exposure to greater neighborhood disadvantage is poorly understood. We examined the association between race and 30-day readmissions in a nationally representative sample of Black and non-Hispanic White individuals with dementia diagnoses. METHODS: This retrospective cohort study used 100% Medicare fee-for-service claims from all 2014 hospitalizations nationwide among Medicare enrollees with dementia diagnosis linked to patient, stay, and hospital factors. The sample consisted of 1,523,142 hospital stays among 945,481 beneficiaries. The relationship between all cause 30-day readmissions and the explanatory variable of self-reported race (Black, non-Hispanic White) was examined via generalized estimating equations approach adjusting for patient, stay, and hospital-level characteristics to model 30-day readmission odds. RESULTS: Black Medicare beneficiaries had 37% higher readmission odds compared to White beneficiaries (unadjusted OR 1.37, CI 1.35-1.39). This heightened readmission risk persisted after adjusting for geographic factors (OR 1.33, CI 1.31-1.34), social factors (OR 1.25, CI 1.23-1.27), hospital characteristics (OR 1.24, CI 1.23-1.26), stay-level factors (OR 1.22, CI 1.21-1.24), demographics (OR 1.21, CI 1.19-1.23), and comorbidities (OR 1.16, CI 1.14-1.17), suggesting racially-patterned disparities in care account for a portion of observed differences. Associations varied by individual-level exposure to neighborhood disadvantage such that the protective effect of living in a less disadvantaged neighborhood was associated with reduced readmissions for White but not Black beneficiaries. Conversely, among White beneficiaries, exposure to the most disadvantaged neighborhoods associated with greater readmission rates compared to White beneficiaries residing in less disadvantaged contexts. CONCLUSIONS: There are significant racial and geographic disparities in 30-day readmission rates among Medicare beneficiaries with dementia diagnoses. Findings suggest distinct mechanisms underlying observed disparities differentially influence various subpopulations.

"It's You": Caregiver and Clinician Perspectives on Lucidity in People Living With Dementia.

BACKGROUND AND OBJECTIVES: Episodes of lucidity (ELs), or a transient return of abilities believed to be lost in people living with dementia, are a growing area of interest. These events hold important implications for care, caregiving, and our understanding of underlying etiologies. Research on ELs is largely limited to retrospective reports. The perspectives of professional and family caregivers on ELs and research approaches can inform efforts to define and study lucidity. The present study examined family caregiver and hospice clinician experiences with and perspectives on ELs in people living with dementia and observational approaches to studying these events. RESEARCH DESIGN AND METHODS: This exploratory, descriptive qualitative study employed semistructured interviews (N = 20 caregivers, N = 6 clinicians). Data were analyzed using Rapid Identification of Themes and subsequent duplicate review of interview data to enhance trustworthiness. RESULTS: Most participants readily recalled events they perceived as ELs, describing a transient return of abilities they felt was significant and/or meaningful. Defining features, interpretations, and the perceived impact of ELs varied, although ELs were commonly conceptualized as a manifestation of self. Caregivers described extensive efforts to detect patterns and supportive social conditions for ELs. Participants supported use of audiovisual observation to study ELs and provided recommendations for privacy, workflow, and caregiver engagement. DISCUSSION AND IMPLICATIONS: Interpretations of ELs are heterogeneous, and recognition of these events may necessitate close familiarity with the person living with dementia. Participants endorse observational approaches and integration of caregivers in this research.

Experiences of in-hospital care among dementia caregivers in the context of high neighborhood-level disadvantage.

BACKGROUND: Persons living with dementia (PLWD) experience high rates of hospitalization and rehospitalization, exposing them to added risk for adverse outcomes including delirium, hastened cognitive decline, and death. Hospitalizations can also increase family caregiver strain. Despite disparities in care quality surrounding hospitalizations for PLWD, and evidence suggesting that exposure to neighborhood-level disadvantage increases these inequities, experiences with hospitalization among PLWD and family caregivers exposed to greater levels of neighborhood disadvantage are poorly understood. This study examined family caregiver perspectives and experiences of hospitalizations among PLWD in the context of high neighborhood-level disadvantage. METHODS: We analyzed data from the Stakeholders Understanding of Prevention Protection and Opportunities to Reduce HospiTalizations (SUPPORT) study, an in-depth, multisite qualitative study examining hospitalization and rehospitalization of PLWD in the context of high neighborhood disadvantage, to identify caregiver perspectives and experiences of in-hospital care. Data were analyzed using rapid identification of themes; duplicate transcript review was used to enhance rigor. RESULTS: Data from N = 54 individuals (47 individual interviews, 2 focus groups with 7 individuals) were analyzed. Sixty-three percent of participants identified as Black/African American, 35% as non-Hispanic White, and 2% declined to report. Caregivers' experiences were largely characterized by PLWD receiving suboptimal care that caregivers viewed as influenced by system pressures and inadequate workforce competencies, leading to communication breakdowns and strain. Caregivers described poor collaboration between clinicians and caregivers with regard to in-hospital care delivery, including transitional care. Caregivers also highlighted the lack of person-focused care and the exclusion of the PLWD from care. CONCLUSIONS: Caregiver perspectives highlight opportunities for improving hospital care for PLWD in the context of neighborhood disadvantage and recognition of broader issues in care structure that limit their capacity to be actively involved in care. Further work should examine and develop strategies to improve caregiver integration during hospitalizations across diverse contexts.