Mapping the Landscape of Those Left Behind When a Person With Dementia Dies: Roles of Race and Ethnicity.

INTRODUCTION: People with dementia can have many family and friends who might be affected by their deaths. Pursuing the long-term aim of understanding how dementia deaths affect close family and friends, this project lays groundwork through estimates of who those close family and friends are, with special attention to race and ethnicity. METHOD: Regression models estimated associations between dementia, race/ethnicity, and close family and friend network size, controlling for age, sex, education, marital status, and household wealth for 1386 deceased people with dementia from the Health and Retirement Study (2004 to 2018). RESULTS: Persons with dementia had an average of 9.4 close family and friends at death. But patterns of close family and friends were different among non-Latino Black (10.8), Latino (9.9), and non-Latino White (9.2) people with dementia at death. Notably, non-Latino White persons with dementia had the fewest close family (3.7), followed by non-Latino Black (5.1), and Latino (7.7) persons with dementia. DISCUSSION: Knowing who might be affected by dementia deaths is the first step to explore how dementia-related deaths impact close family and friends. Future work can now sample bereaved family and friends of people with dementia to explore their experiences and develop culturally appropriate supports.

Older Adult and Family Caregiver Perspectives on Engagement in Primary Care.

The purpose of the current in-depth qualitative study was to explore the experiences of older adults and family caregivers in primary care. Twenty patients and caregivers from six Comprehensive Primary Care Plus (CPC+) practices' Patient and Family Advisory Councils within a large academic health system participated in telephone interviews from December 2018 to May 2019. Participants were mostly women (60%), with an average age of 71 years and nine chronic conditions. Transcripts were coded using conventional content analysis. Two key themes emerged related to person-centered care (PCC): Engagement in Health Care and Patient-Provider Relationship. Engagement in health care was defined by participants as: being proactive, centering on patient goals in treatment discussions, adherence, and self-triaging. Approximately all participants discussed the importance of the relationship and interactions with their provider as influencing their engagement. The identified themes offer recommendations for further improvement of primary PCC. [Journal of Gerontological Nursing, 48(11), 7-13.].

Predictors of change over time in satisfaction with outdoor activities ratings among long-term care services and supports recipients.

OBJECTIVES: To identify predictors of change in older adults' satisfaction with outdoor activities ratings over the first two years of enrollment in long-term services and supports (LTSS). METHODS: Self-rated satisfaction with outdoor activities (not at all satisfied to extremely satisfied) was the primary outcome of this secondary data analysis. Mixed-effects linear regression modeling with a backward elimination process was used for analyses. RESULTS: In the final model (N = 453) older LTSS recipients at baseline had lower ratings of satisfaction with outdoor activities over time, whereas younger recipients had higher ratings over time. Those who moved into a residential facility at baseline had an increase in outdoor activity satisfaction ratings over time compared to older adults who received home and community-based services that had a decrease. DISCUSSION: LTSS clinicians can use these findings to support older adults with decision-making around enrollment into LTSS, address preferences, and develop person-centered care interventions for outdoor activity.

Nursing home directors of nursing experiences regarding safety among residents with obesity.

The prevalence of nursing home (NH) residents with obesity is rising. Perspectives of NH Directors of Nursing (DONs) who oversee care trajectories for residents with obesity is lacking. This study aimed to describe the experiences of NH DONs regarding care and safety for NH residents with obesity. An adapted version of Donabedian's structure-process-outcome model guided this qualitative descriptive study. Semi-structured interviews were conducted with 15 DONs. Data were analyzed using directed content analysis, and findings are presented under the model's constructs. We learned that admission decisions for NH referrals of patients with obesity are complex due to reimbursement issues, available space and resources, and resident characteristics. DONs described the need to coach and mentor Certified Nursing Assistants to provide safe quality care and that more staff education is needed. We identified novel findings regarding the challenges of short-term residents' experience transitioning out of care due to limited resources.

Predictors of change over time in subjective daytime sleepiness among older adult recipients of long-term services and supports.

OBJECTIVES: Daytime sleepiness is associated with multiple negative outcomes in older adults receiving long-term services and supports (LTSS) including reduced cognitive performance, need for greater assistance with activities of daily living and decreased social engagement. The purpose of this study was to identify predictors of change in subjective daytime sleepiness among older adults during their first 2 years of receiving LTSS. DESIGN AND SETTING: Secondary analysis of data from a prospective longitudinal study of older adults who received LTSS in their homes, assisted living communities or nursing homes interviewed at baseline and every 3 months for 24 months. PARTICIPANTS: 470 older adults (60 years and older) newly enrolled in LTSS (mean = 81, SD = 8.7; range 60-98; 71% women). MEASUREMENTS: Subjective daytime sleepiness was assessed every 3 months through 2 years using the Epworth Sleepiness Scale. Multiple validated measures were used to capture health-related quality of life characteristics of enrollees and their environment, including symptom status (Symptom Bother Scale), cognition (Mini Mental Status Exam), physical function (Basic Activities of Daily Living), physical and mental general health, quality of life (Dementia Quality of Life, D-QoL), depressive symptoms (Geriatric Depression Scale) and social support (Medical Outcomes Survey-Social Support). RESULTS: Longitudinal mixed effects modeling was used to examine the relationship between independent variables and continuous measure of daytime sleepiness. Increased feelings of belonging, subscale of the D-QoL (effect size = -0.006, 95% CI: -0.013 to -0.0001, p = 0.045) and higher number of depressive symptoms (effect size = -0.002, 95% CI: -0.004 to -0.001, p = 0.001) at baseline were associated with slower rates of increase in daytime sleepiness over time. CONCLUSIONS: Comprehensive baseline and longitudinal screening for changes in daytime sleepiness along with depression and perceived quality of life should be used to inform interventions aimed at reducing daytime sleepiness among older adults receiving LTSS.

Harsh communication: characteristics of caregivers and persons with dementia.

Objectives: While ways to reduce caregiver burden have dominated dementia care research, there is little understanding of daily communication and its relationship to caregiver burden and depression. In this study, we sought to: (1) describe the frequency of harsh communication used by caregivers; (2) examine the relationship between harsh communication, caregiver and person with dementia characteristics; and (3) determine the contributions of caregiver depression and burden on such communication.Method: Cross-sectional baseline data were drawn from 250 dyads, who participated in the Dementia Behavior Study (NCT01892579). Hierarchical linear regression models were used to examine the relationship between dyad characteristics and harsh communication scores (using the 6-item Negative Communication Scale), controlling for three groups of covariates: sociodemographic, relationship characteristics and health factors.Results: More than half of the caregivers (mean age = 65.4, 81.2% women, 45.6% spouses) reported they felt like screaming/yelling (N = 138, 55.2%) or used a harsh tone (N = 129, 51.6%) at persons with dementia (Mini Mental Status Examination mean = 14.3, SD: 7.8) at least sometimes. When controlling for all covariates, for each unit increase in caregiver burden, harsh communication increased by 0.486 units (p < 0.001); similarly, for each unit increase in caregiver depression, harsh communication increased by 0.301units (p < 0.001).Conclusion: Over half of dementia caregivers reported they felt like or used one or more harsh forms of communication. Caregiver burden and depression were incrementally associated with greater use of negative communication. Providing caregivers with knowledge, support and specific communication skills may lessen the frequency of harsh communication and possibly reduce burden and depression.

High-value care for older adults with complex care needs: Leveraging nurses as innovators.

BACKGROUND: Our health care system is facing unprecedented and complex challenges in caring for older adults and their families. A paradigm shift is needed that recognizes new roles and competencies for nurses to play a leadership role in the design and implementation of high value care models. PURPOSE: The purpose of this paper is to introduce a series of recommendations for leveraging nurses to generate innovative tools and solutions for the delivery of value-based care for older adults living with complex health and social needs and their families. METHODS: These recommendations were generated by a Think-Tank of national experts based on review of current evidence and focus groups with older adults. FINDING: The generated recommendations focus on positioning nurses to assume leadership roles in implementing evidence-based care models, preparing nurses to serve as health innovators and catalysts of system transformation, and fostering system-level infrastructure that leverages the contributions of nurses for current and emerging roles. DISCUSSION: Nurses as innovators can address the challenges in providing high quality care for older adults with complex needs and their families. System-level infrastructure, including resources for training and implementation of well-established programs, is necessary to leverage the contributions of nurses and facilitate innovative approaches to care.

Person-Centered Care Plans for Nursing Home Residents With Behavioral and Psychological Symptoms of Dementia.

Little literature exists examining the development and implementation of person-centered care (PCC) plans focused on behavioral and psychological symptoms of dementia (BPSD). The current study aimed to describe BPSD documented in nursing home (NH) residents' care plans, the types of approaches staff document in addressing those symptoms, and whether resident and/or facility characteristics are associated with documentation of PCC approaches. The sample included 553 residents from 55 NHs in two East Coast states. Resistiveness to care (44.9%), agitation (42.2%), and aggression (42%) were most frequently documented in care plans. PCC approaches were documented in care plans in 21.3% to 62.7% of cases depending on BPSD type. Resident (e.g., younger age, lower functional ability, lower cognitive ability, longer length of stay, male gender) and facility (e.g., less certified nursing assistant staffing hours, greater percentage of residents taking antipsychotic medications, non-profit status) characteristics were associated with increased odds of PCC approaches being documented. Optimal PCC planning is discussed, and a sample PCC plan is provided. [Journal of Gerontological Nursing, 46(11), 17-27.].

Integrative review: Persistent vocalizations among nursing home residents with dementia.

ABSTRACTBackground:Nursing home (NH) residents with dementia commonly exhibit persistent vocalizations (PVs), otherwise known in the literature as disruptive or problematic vocalizations. Having a better understanding of PVs and the research completed to date on this phenomenon is important to guide further research and clinical practice in NHs. This integrative review examines the current literature on the phenomenon of PVs among NH residents with dementia. METHODS: We conducted a search in the PubMed, Scopus, Ovid Medline, and CINAHL databases for articles published in English. Articles were included if the focus was specifically on research involving vocal behaviors of older adults with dementia residing in NHs. RESULTS: Our literature search revealed eight research articles that met the inclusion criteria. These studies were published in 2011 or earlier and involved small sample sizes. Seven of these studies were descriptive and the eighth was a non-pharmacological intervention study for PVs exhibited by NH residents with dementia. These studies were vastly different in their labeling, definitions, and categorization of the PVs as well as methods of measuring PVs. CONCLUSION: The heterogeneity of the evidence limits the ability to make recommendations for practice. Given the paucity of research on this phenomenon; recommendations for additional research are given.

The Use of Closing Questions in Qualitative Research: Results of a Web-Based Survey.

BACKGROUND: Scarce and differing reasons for including closing questions in qualitative research exist, but how data generated from these questions are used remains uncertain. OBJECTIVES: The purpose of the study was to understand if and how researchers use closing questions in qualitative research, specifically the research questions were: (a) "Why do qualitative researchers include or exclude closing questions during interviews?" and (b) "How do qualitative researchers use data from closing questions?" METHODS: A qualitative descriptive design using a single, asynchronous, web-based, investigator-designed survey containing 14 items was used to collect data. Convenience and snowball sampling were used to recruit participants. Data were analyzed using descriptive statistics and qualitative content analysis. Codes were developed from the qualitative data. Subcategories were derived from similar codes, and these subcategories were further scrutinized and were used to create broad categories. RESULTS: The number of respondents per question ranged from 76 to 99; most identified nursing and sociology as their academic disciplines, lived in the United States, and were involved in qualitative research for 1-10 years. Data, the interview, the interviewee, and the interviewer were broad categories to emerge as reasons for including closing questions. Only one respondent reported a reason for excluding closing questions. The uses of closing question data were described in four broad categories: analysis, data, the interview guide, and inquiry. DISCUSSION: Researchers frequently included closing questions in qualitative studies. The reasons for including these questions and how data are used vary, and support limited previously published literature. One unique reason, adding "new breath" to the interview, emerged. Study findings can aid qualitative researchers in deciding whether to include closing questions.

Psychometric Evaluation of the MOBID Dementia Pain Scale in U.S. Nursing Homes.

PURPOSE: The Mobilization-Observation-Behavior-Intensity-Dementia (MOBID) Pain Scale is an observational tool in which raters estimate pain intensity on a 0-10 scale following five standardized movements. The tool has been shown to be valid and reliable in northern European samples and could be useful in the United States (US) for research and clinical purposes. The goal of this study was to examine the validity and reliability of the MOBID among English-speaking nursing home residents in the US. DESIGN: Cross-sectional study. SETTINGS: Sixteen nursing homes in Pennsylvania, New Jersey, Georgia and Alabama. PARTICIPANTS: One hundred thirty-eight older adults with dementia and moderate to severe cognitive impairment. METHODS: Validity was evaluated using Spearman correlations between the MOBID overall pain intensity score and 1) an expert clinician's pain intensity rating (ECPIR), 2) nursing staff surrogate pain intensity ratings, and 3) known correlates of pain. We assessed internal consistency by Cronbach's alpha. RESULTS: MOBID overall scores were significantly associated with expert clinician's rating of current and worst pain in the past week (rho = 0.54, and 0.57; p < .001, respectively). Statistically significant associations also were found between the MOBID overall score and nursing staff current and worst pain intensity ratings as well as the Cornell Scale for Depression in Dementia (rho = 0.29; p < .001). Internal consistency was acceptable (α = 0.83). CONCLUSIONS AND CLINICAL IMPLICATIONS: Result of this study support the use of the MOBID in English-speaking staff and residents in the US. Findings also suggest that the tool can be completed by trained, nonclinical staff.

Characteristics of Qualitative Descriptive Studies: A Systematic Review.

Qualitative description (QD) is a term that is widely used to describe qualitative studies of health care and nursing-related phenomena. However, limited discussions regarding QD are found in the existing literature. In this systematic review, we identified characteristics of methods and findings reported in research articles published in 2014 whose authors identified the work as QD. After searching and screening, data were extracted from the sample of 55 QD articles and examined to characterize research objectives, design justification, theoretical/philosophical frameworks, sampling and sample size, data collection and sources, data analysis, and presentation of findings. In this review, three primary findings were identified. First, although there were some inconsistencies, most articles included characteristics consistent with the limited available QD definitions and descriptions. Next, flexibility or variability of methods was common and effective for obtaining rich data and achieving understanding of a phenomenon. Finally, justification for how a QD approach was chosen and why it would be an appropriate fit for a particular study was limited in the sample and, therefore, in need of increased attention. Based on these findings, recommendations include encouragement to researchers to provide as many details as possible regarding the methods of their QD studies so that readers can determine whether the methods used were reasonable and effective in producing useful findings. © 2016 Wiley Periodicals, Inc.

Determinants of behavioral and psychological symptoms of dementia: A scoping review of the evidence.

BACKGROUND: Behavioral and psychological symptoms of dementia (BPSD) are prevalent in people with neurodegenerative diseases. PURPOSE: In this scoping review the Kales, Gitlin and Lykestos framework is used to answer the question: What high quality evidence exists for the patient, caregiver and environmental determinants of five specific BPSD: aggression, agitation, apathy, depression and psychosis? METHOD: An a priori review protocol was developed; 692 of 6013 articles retrieved in the search were deemed eligible for review. Gough's Weight of Evidence Framework and the Cochrane Collaboration's tool for assessing risk of bias were used. The findings from 56 high quality/low bias articles are summarized. DISCUSSION: Each symptom had its own set of determinants, but many were common across several symptoms: neurodegeneration, type of dementia, severity of cognitive impairments, and declining functional abilities, and to a lesser extent, caregiver burden and communication. CONCLUSION: Research and policy implications are relevant to the National Plan to Address Alzheimer's Disease.

Why older adults may decline offers of post-acute care services: A qualitative descriptive study.

The most common post-acute care (PAC) services available to patients after hospital discharge include home care, skilled nursing facilities, nursing homes, inpatient rehabilitation, and hospice. Patients who need PAC and receive services have better outcomes, however almost one-third of those offered services decline. Little research exists on PAC decision-making and why patients may decline services. This qualitative descriptive study explored the responses of thirty older adults to the question: "Can you, from the patient point of view, tell me why someone would not want post hospital care?" Three themes emerged. Participants may decline due to 1) previous negative experiences with PAC, or 2) a preference to be home. Some participants stated, "I'd be there" and would not decline services. Participants also discussed 3) why other patients might decline PAC which included patients' past experiences, lack of understanding/preconceived ideas, and preferences. Clinical implications include assessing patients' knowledge and experience before providing recommendations.

Identifying distinct risk profiles to predict adverse events among community-dwelling older adults.

Preventing adverse events among chronically ill older adults living in the community is a national health priority. The purpose of this study was to generate distinct risk profiles and compare these profiles in time to: hospitalization, emergency department (ED) visit or death in 371 community-dwelling older adults enrolled in a Medicare demonstration project. Guided by the Behavioral Model of Health Service Use, a secondary analysis was conducted using Latent Class Analysis to generate the risk profiles with Kaplan Meier methodology and log rank statistics to compare risk profiles. The Vuong-Lo-Mendell-Rubin Likelihood Ratio Test demonstrated optimal fit for three risk profiles (High, Medium, and Low Risk). The High Risk profile had significantly shorter time to hospitalization, ED visit, and death (p < 0.001 for each). These findings provide a road map for generating risk profiles that could enable more effective targeting of interventions and be instrumental in reducing health care costs for subgroups of chronically ill community-dwelling older adults.

Exploring Social Support Experiences of Caregivers of Persons Living With Dementia in Hospice Care.

As the number of persons living with dementia (PLWD) enrolling in hospice care rises, caregiver support becomes increasingly crucial. While social support can help buffer caregiver stress, many caregivers report feeling isolated and having unmet needs, highlighting the limited research on this population. This qualitative descriptive study aimed to better understand caregivers' social support during the period when the PLWD is enrolled in hospice care. Analyzing qualitative data from 22 caregivers of PLWD using conventional content analysis, we identified the theme "Variations in Social Connections." This theme encompasses two subthemes: "never completely alone," indicating social support from family, friends, and neighbors, and "disappointed sometimes," reflecting instances when some individuals in the caregivers' lives couldn't provide regular support. These findings underscore the need for individualized interventions, as each caregiver experiences social support uniquely. Future research should consider the variations in social support among caregivers of PLWD to inform caregiving practices effectively.

Ready or Not: A Conceptual Model of Organizational Readiness for Embedded Pragmatic Dementia Research.

The National Institute on Aging Alzheimer's Disease/Alzheimer's Disease and Related Dementias Research Implementation Milestones emphasize the need for implementation research that maximizes up-take and scale-up of evidence-based dementia care practices across settings, diverse populations, and disease trajectories. Organizational readiness for implementation is a salient consideration when planning and conducting embedded pragmatic trials, in which interventions are implemented by provider staff. The current article examines the conceptual and theoretical underpinnings of organizational readiness for implementation and the operationalization of this construct. We offer a preliminary conceptual model for explicating and measuring organizational readiness and describe the unique characteristics and demands of implementing evidence-based interventions targeting persons with dementia and/or their care partners. [Research in Gerontological Nursing, 17(3), 149-160.].

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.

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.