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 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.

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.

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.].

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.

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.

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.

"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.

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.

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.

The Intersections of Structural Racism and Ageism in the Time of COVID-19: A Call to Action for Gerontological Nursing Science.

The health consequences of systemic racism and ageism have received growing attention as the coronavirus disease 2019 pandemic has illuminated long-standing inadequacies and injustices that are structurally engrained in our health systems. The current State of the Science Commentary addresses the intersecting influences of systemic racism and ageism, and other "-isms" that conspire to create disparate health outcomes for older adults from historically excluded and marginalized backgrounds. We focus specifically on the long-term care sector as a representative microcosm of structural inequities, while recognizing that these unjust barriers to health are widespread, endemic, and pervasive. We present a call to action for gerontological nursing science to engage deeply and robustly in these realities, and the ethical and scientific imperative they present to ensure that all older adults encounter just conditions for maximizing their health and well-being. [Research in Gerontological Nursing, 15(1), 6-13.].

Verbal and Nonverbal Expressions of Persons Living With Dementia as Indicators of Person-Centered Caregiving.

BACKGROUND AND OBJECTIVES: Improved measures capable of capturing the influence of person-centered caregiving by staff in formal care settings on people living with dementia beyond deficit-oriented outcomes such as absence or reduction of symptoms are important for measuring progress toward improvements in well-being. This exploratory ethnographic study aimed to identify verbal and nonverbal expressions evidenced by people living with dementia surrounding person-centered caregiving approaches and to consider their use in informing temporally specific observational measures. RESEARCH DESIGN AND METHODS: This study adopted a microethnographic approach through secondary analysis of 5.3 h of audiovisual observations of people living with dementia (N = 9) in nursing home settings at mealtimes. We observed expressions surrounding person-centered caregiving approaches. A systematic review of audiovisual observations generated codes (observable indicators) of expressions that were characterized at their most discrete and unambiguous level. RESULTS: Drawing from 82 observable verbal and nonverbal expressions by people living with dementia, 14 discrete observable indicators were identified, broadly evidencing shifts in engagement and communication. We found that people living with dementia's expressions served both responsive and initiatory communicative purposes. DISCUSSION AND IMPLICATIONS: Efforts to expand positive outcome measurement for people living with dementia should extend beyond characterizing them as passive respondents toward active participants in their lived experiences. Identified observable indicators can inform efforts to refine and validate measures of expressions among people living with dementia. Further research can extend this inquiry into different contexts and engage input from people living with dementia and caregivers.

Dementia Caregivers' Experiences Engaging Supportive Services While Residing in Under-Resourced Areas.

BACKGROUND: Family caregivers of people living with dementia benefit from supportive service use to address care needs associated with caregiving. Yet, research consistently demonstrates low rates of service use. Existing research has focused on barriers and facilitators to service use, with few studies examining the influence of caregivers' environmental context which often patterns social advantage and health services accessibility. OBJECTIVE: To describe the perspectives of caregivers residing in socially disadvantaged areas have in regards to utilizing supportive services. METHODS: Ten informal caregivers residing in socially disadvantaged areas participated in in-depth interviews that were analyzed using thematic analysis. RESULTS: Across all interviews, caregivers spontaneously described common precedents of service use (crisis or accumulation of unmet needs) and a distinct sequence of stages (seeking, initiating, and utilizing) surrounding service engagement. Major themes characterizing caregivers' experiences throughout service engagement highlight the varied influence of personal, familial, health, and social system-related factors. Findings demonstrate that caregivers may have different service needs as dementia progresses and that gerontological social work practice can facilitate service use. CONCLUSION: While preliminary, these findings provide important insights into new domains that can be further examined in future research and intervention efforts to improve supportive service use in socially disadvantaged and underserved communities.

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.].

Diverse perspectives on hospitalisation events among people with dementia: protocol for a multisite qualitative study.

INTRODUCTION: People living with dementia (PLWD) are more likely to experience hospitalisation events (hospitalisation, rehospitalisation) than those without dementia. Many hospitalisation events, particularly rehospitalisation within 30 days of discharge, are thought to be avoidable. Yet our understanding of dementia-specific risk and protective factors surrounding avoidable hospitalisation is limited to specific intersetting transitions and predominantly clinician perspectives. Broader insights are needed to design accessible and effective solutions for reducing avoidable hospitalisations. We have designed the Stakeholders Understanding of Prevention Protection and Opportunities to Reduce HospiTalizations (SUPPORT) Study to address these gaps. The objectives of the SUPPORT Study are to elicit and examine family caregiver, community and hospital providers' perspectives on avoidable hospitalisation events among PLWD, and to identify opportunities for effective prevention. METHODS AND ANALYSIS: We will conduct a multisite, descriptive qualitative study to interview around 100 family caregivers, community and hospital providers. We will identify and sample from regions and communities with higher socio-contextual disadvantage and hospital utilisation, and will aim to recruit individuals representing diverse racial/ethnic backgrounds. Interviews will follow a descriptive qualitative design in conjunction with constant comparison techniques to sample divergent situations and events. We will employ a range of analytical approaches to address specific research questions including thematic (inductive and deductive), comparative and dimensional analysis. Interviews will be conducted individually or in focus groups and follow a semistructured interview guide. ETHICS AND DISSEMINATION: The study is approved by the University of Wisconsin-Madison Institutional Review Board. Informed consent procedures will incorporate steps to evaluate capacity to provide informed consent in the event that participants express concerns with thinking or memory or demonstrate challenges recalling study details during the consent process to ensure capacity to consent to participation. A series of publicly available reports, seminars and symposia will be undertaken in collaboration with collaborating organisation partners.

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.

Ethical and Methodological Considerations for Evaluating Participant Views on Alzheimer's and Dementia Research.

The urgent need to expand enrollment in Alzheimer's disease and related dementia (ADRD) research has synergized calls for an empiric science of research recruitment, yet, progress in this area is hindered by challenges to measuring views toward ADRD research. This paper reports ethical and methodological considerations identified through a prospective qualitative study investigating ADRD patient and caregiver views on research recruitment and participation surrounding acute illness. Ethical and methodological considerations were identified through a combination of memoing, collaboration with a Community Advisory Board (CAB), and analysis of interview data from ADRD patients (N = 3) and/or caregivers (N = 28). These included risk for undue influence attributable to role ambiguity/motivational misconceptions, divergent decision-making preferences, bias contributing to low referrals of ADRD participants, and difficulty answering abstract/hypothetical questions. Many considerations were successfully addressed with multifaceted, proactive strategies, and CAB input. Findings have implications for recruitment science research and the validity of inferences regarding research preferences.