Leveraging Existing Datasets to Advance Family Caregiving Research: Opportunities to Measure What Matters.

More than 17.7 million people in the U.S. care for older adults. Analyzing population datasets can increase our understanding of the needs of family caregivers of older adults. We reviewed 14 U.S. population-based datasets (2003-2023) including older adults' and caregivers' data to assess inclusion and measurement of 8 caregiving science domains, with a focus on whether measures were validated and/or unique variables were used. Challenges exist related to survey design, sampling, and measurement. Findings highlight the need for consistent data collection by researchers, state, tribal, local, and federal programs, for improved utility of population-based datasets for caregiving and aging research.

Dying with dementia in nursing homes: A population-based study of decedents and their families.

BACKGROUND: Families play a critical role in end-of-life (EOL) care for nursing home (NH) residents with dementia. Despite the important role of family, little is known about the availability and characteristics of families of persons with dementia who die in NHs. METHODS: This is a retrospective cohort study of 18,339 individuals 65 years and older with dementia who died in a Utah NH between 1998 and 2016, linked to their first-degree family (FDF) members (n = 52,566; spouses = 11.3%; children = 58.3%; siblings = 30.3%). Descriptive statistics, chi-square tests, and t-tests were used to describe the study cohort and their FDF members and to compare sociodemographic and death characteristics of NH decedents with (n = 14,398; 78.5%) and without FDF (n = 3941; 21.5%). RESULTS: Compared with NH decedents with FDF, NH decedents with dementia without FDF members were more likely to be older (mean age 86.5 vs 85.5), female (70.5% vs 59.3%), non-White/Hispanic (9.9% vs 3.2%), divorced/separated/widowed (84.4% vs 61.1%), less educated (<12th grade; 42.2% vs 33.7%), have Medicare and Medicaid (20.8% vs 12.5%), and die in a rural/frontier NH (25.0% vs 23.4%). NH decedents who did not have FDF were also more likely to die from cancer (4.2% vs 3.9%), chronic obstructive pulmonary disease (COPD; 3.9% vs 2.5%), and dementia (40.5% vs 38.4%) and were less likely to have 2+ inpatient hospitalizations at EOL (13.9% vs 16.2%), compared with NH decedents with FDF. CONCLUSIONS: Findings highlight differences in social determinants of health (e.g., sex, race, marital status, education, insurance, rurality) between NH decedents with dementia who do and do not have FDF-factors that may influence equity in EOL care. Understanding the role of family availability and familial characteristics on EOL care outcomes for NH residents with dementia is an important next step to informing NH dementia care interventions and health policies.

Family Ties at End-of-Life: Characteristics of Nursing Home Decedents With and Without Family.

Background: Little is known about nursing home (NH) residents' family characteristics despite the important role families play at end-of-life (EOL). Objective: To describe the size and composition of first-degree families (FDFs) of Utah NH residents who died 1998-2016 (n = 43,405). Methods: Using the Utah Population Caregiving Database, we linked NH decedents to their FDF (n = 124,419; spouses = 10.8%; children = 55.3%; siblings = 32.3%) and compared sociodemographic and death characteristics of those with and without FDF members (n = 9424). Results: Compared to NH decedents with FDF (78.3%), those without (21.7%) were more likely to be female (64.7% vs. 57.1%), non-White/Hispanic (11.2% vs. 4.2%), less educated (<9th grade; 41.1% vs. 32.4%), and die in a rural/frontier NH (25.3% vs. 24.0%, all p < 0.001). Despite similar levels of disease burden (Charlson Comorbidity score 3 + 37.7% vs. 38.0%), those without FDF were more likely to die from cancer (14.2% vs. 12.4%), Chronic Obstructive Pulmonary Disease (COPD) (6.0% vs. 4.0%), and dementia (17.1% vs. 16.6%, all p < 0.001), and were less likely to have 2+ hospitalizations at EOL (20.5% vs. 22.4%, p < 0.001). Conclusions: Among NH decedents, those with and without FDF have different sociodemographic and death characteristics-factors that may impact care at EOL. Understanding the nature of FDF relationship type on NH resident EOL care trajectories and outcomes is an important next step in clarifying the role of families of persons living and dying in NHs.

Disparities and determinants of place of death: Insights from the Utah Population Database.

To better understand determinants and potential disparities in end of life, we model decedents' place of death with explanatory variables describing familial, social, and economic resources. A retrospective cohort of 204,041 decedents and their family members are drawn from the Utah Population Database family caregiving dataset. Using multinomial regression, we model place of death, categorized as at home, in a hospital, in another location, or unknown. The model includes family relationship variables, sex, race and ethnicity, and a socioeconomic status score, with control variables for age at death and death year. We identified the effect of a family network of multiple caregivers, with 3+ daughters decreasing odds of a hospital death by 17 percent (OR: 0.83 [0.79, 0.87], p < 0.001). Place of death also varies significantly by race and ethnicity, with most nonwhite groups more likely to die in a hospital. These determinants may contribute to disparities in end of life.

Assessing Technical Feasibility and Acceptability of Telehealth Palliative Care in Nursing Homes.

Background: Over two-thirds of nursing home (NH) residents are eligible for palliative care (PC), yet few receive it, particularly outside of hospice. Little is known about the technical feasibility and acceptability of using telehealth for PC consultations in NHs. Objective: To determine the technical feasibility and acceptability of PC telehealth for NH residents seen by a PC team in the hospital in the previous 30 days. Design: Mixed methods study including data collection from field observations, focus groups about the telehealth experience with content analysis, and a web-based survey about technical feasibility and acceptability. Sample and Approach: Eighteen participants (six PC-eligible NH residents, one PC physician, five family members, six NH nurses) were recruited in 2016 to participate in one of six PC video visits followed by a video-based focus group and web-based survey. Results: All participants were comfortable with the PC video visit format, believed it could improve communication and care coordination, and reported they could see themselves using telehealth in the near future. For technical feasibility, audio quality was rated mostly good/very good (71%) and visual quality was rated fair (50%). Conclusions: PC video visits are technically feasible and acceptable to NH residents, families, and staff, representing an innovative and relatively low-cost opportunity to improve access to needed NH-based PC services. Assessing stakeholder perspectives on the use of this technology can help inform the selection of the proper telehealth platform to meet the clinical and infrastructure needs, as well as protocol modifications required before testing in a larger trial.

Communication Disparities between Nursing Home Team Members.

Optimal care in nursing home (NH) settings requires effective team communication. Certified nursing assistants (CNAs) interact with nursing home residents frequently, but the extent to which CNAs feel their input is valued by other team members is not known. We conducted a cross-sectional study in which we administered a communication survey within 20 Utah nursing home facilities to 650 team members, including 124 nurses and 264 CNAs. Respondents used a 4-point scale to indicate the extent to which their input is valued by other team members when reporting their concerns about nursing home residents. We used a one-way ANOVA with a Bonferroni correction. When compared to nurses, CNAs felt less valued (CNA mean = 2.14, nurse mean = 3.24; p < 0.001) when reporting to physicians, and less valued (CNA mean = 1.66, nurse mean = 2.71; p < 0.001) when reporting to pharmacists. CNAs did not feel less valued than nurses (CNA mean = 3.43, nurse mean = 3.37; p = 0.25) when reporting to other nurses. Our findings demonstrate that CNAs feel their input is not valued outside of nursing, which could impact resident care. Additional research is needed to understand the reasons for this perception and to design educational interventions to improve the culture of communication in nursing home settings.

High-Quality Nursing Home and Palliative Care-One and the Same.

Many individuals receiving post-acute and long-term care services in nursing homes have unmet palliative and end-of-life care needs. Hospice has been the predominant approach to meeting these needs, although hospice services generally are available only to long-term care residents with a limited prognosis who choose to forego disease-modifying or curative therapies. Two additional approaches to meeting these needs are the provision of palliative care consultation through community- or hospital-based programs and facility-based palliative care services. However, access to this specialized care is limited, services are not clearly defined, and the empirical evidence of these approaches' effectiveness is inadequate. In this article, we review the existing evidence and challenges with each of these 3 approaches. We then describe a model for effective delivery of palliative and end-of-life care in nursing homes, one in which palliative and end-of-life care are seen as integral to high-quality nursing home care. To achieve this vision, we make 4 recommendations: (1) promote internal palliative and end-of-life care capacity through comprehensive training and support; (2) ensure that state and federal payment policies and regulations do not create barriers to delivering high-quality, person-centered palliative and end-of-life care; (3) align nursing home quality measures to include palliative and end-of-life care-sensitive indicators; and (4) support access to and integration of external palliative care services. These recommendations will require changes in the organization, delivery, and reimbursement of care. All nursing homes should provide high-quality palliative and end-of-life care, and this article describes some key strategies to make this goal a reality.

Transitioning to Life in a Nursing Home: The Potential Role of Palliative Care.

BACKGROUND AND OBJECTIVES: Transitioning to a nursing home (NH) is a major life event for 1.4 million NH residents in the United States. Most post-acute NH admissions plan for rehabilitation and discharge home, but with nearly 70% of NH residents being palliative care (PC) eligible, many evolve into long-term placements secondary to poor health and associated decline in function and/or cognition. This article describes the perceptions of NH PC-eligible residents and families transitioning to life in a NH. METHODS: Residents at 3 NHs in Northern California (N = 228) were screened for PC eligibility. A convenience sample of PC-eligible residents and their family members (n = 28) participated in qualitative interviews that explored the experience of living as a NH resident with serious illness. Data were analyzed using grounded theory methodology. RESULTS: Our study provides insights into the experiences of transitioning to a NH from the perspectives of PC-eligible residents and their families. These data describe how PC-eligible residents and their families experienced disempowerment as they perceived being left out of decisions to go to a NH, loss of autonomy once at the NH, dealt with the realization that they would not be going home, and described perceived barriers to going home. DISCUSSION AND IMPLICATIONS: The inclusive and person-centered model of care that PC provides naturally empowers residents and family members. Adequate provision of PC services, together with changes in policy related to NH culture and benefit management, could improve the experience of transitioning to a nursing home.

Advances in geropsychiatric nursing: A decade in review.

This article provides a brief overview of the early development of geropsychiatric nursing (GPN) as background for examining its advancement subsequent to the 2010 Future of Nursing (FON) Report. The FON's education, practice and leadership recommendations form the three pillars that have supported geropsychiatric nursing's continuing evolution, framed within a practice and policy perspective. Lessons learned are relevant to developing the next phase of FON recommendations. The importance of overcoming challenges faced by the field of GPN is supported by the aging global population, the directions of nursing as a discipline, and the clear necessity of an intra- and inter-professional approach to mental health and aging.

Postimplementation Evaluation of a Machine Learning-Based Deterioration Risk Alert to Enhance Sepsis Outcome Improvements.

Machine learning-based early warning systems (EWSs) can detect clinical deterioration more accurately than point-score tools. In patients with sepsis, however, the timing and scope of sepsis interventions relative to an advanced EWS alert are not well understood. The objectives of this study were to evaluate the timing and frequency of fluid bolus therapy, new antibiotics, and Do Not Resuscitate (DNR) status relative to the time of an advanced EWS alert. We conducted 2 rounds of chart reviews of patients with an EWS alert admitted to community hospitals of a large integrated health system in Northern California (round 1: n = 21; round 2: n = 47). We abstracted patient characteristics and process measures of sepsis intervention and performed summary statistics. Sepsis decedents were older and sicker at admission and alert time. Most EWS alerts occurred near admission, and most sepsis interventions occurred before the first alert. Of 14 decedents, 12 (86%) had a DNR order before death. Fluid bolus therapy and new intravenous antibiotics frequently occurred before the alert, suggesting a potential overlap between sepsis care in the emergency department and the first alert following admission. Two tactics to minimize alerts that may not motivate new sepsis interventions are (1) locking out the alert during the immediate time after hospital admission; and (2) triaging and reviewing patients with alerts outside of the unit before activating a bedside response. Some decedents may have been on a palliative/end-of-life trajectory, because DNR orders were very common among decedents. Nurse leaders sponsoring or leading machine learning projects should consider tactics to reduce false-positive and clinically meaningless alerts dispatched to clinical staff.

"They Don't Trust Us": The Influence of Perceptions of Inadequate Nursing Home Care on Emergency Department Transfers and the Potential Role for Telehealth.

In this descriptive, qualitative study, we conducted eight focus groups with diverse informal and formal caregivers to explore their experiences/challenges with nursing home (NH) to emergency department (ED) transfers and whether telehealth might be able to mitigate some of those concerns. Interviews were transcribed and analyzed using a grounded theory approach. Transfers were commonly viewed as being influenced by a perceived lack of trust in NH care/capabilities and driven by four main factors: questioning the quality of NH nurses' assessments, perceptions that physicians were absent from the NH, misunderstandings of the capabilities of NHs and EDs, and perceptions that responses to medical needs were inadequate. Participants believed technology could provide "the power of the visual" permitting virtual assessment for the off-site physician, validation of nursing assessment, "real time" assurance to residents and families, better goals of care discussions with multiple parties in different locations, and family ability to say goodbye.

Pain and Emergency Department Use in the Last Month of Life Among Older Adults With Dementia.

CONTEXT: Pain may be a potentially modifiable risk factor for expensive and burdensome emergency department (ED) visits near the end of life for older adults with dementia. OBJECTIVES: The objective of this study was to assess the effect of pain and unmet need for pain management on ED visits in the last month of life in older adults with dementia. METHODS: This is a mortality follow-back study of older adults with dementia in the National Health and Aging Trends Study who died between 2012 and 2014, linked to Medicare claims. RESULTS: Two hundred eighty-one National Health and Aging Trends Study decedents with dementia met criteria (mean age 86 years, 61% female, 81% white). Fifty-seven percent had at least one ED visit in the last month of life, and 46.5% had an ED visit that resulted in a hospital admission. Almost three out of four (73%) of decedents experienced pain in the last month of life, and 10% had an unmet need for pain management. After adjustment for age, gender, race, educational attainment, income, comorbidities, and impairment in activities of daily living, pain was not associated with increased ED use in the last month of life (adjusted incident rate ratio 0.87, 95% CI 0.64-1.17). However, decedents with unmet need for pain management had an almost 50% higher rate of ED visits in the last month of life than those without unmet needs (adjusted incident rate ratio 1.46, 95% CI 1.07-1.99). CONCLUSION: Among older adults with dementia, unmet need for pain management was associated with more frequent ED visits in the last month of life.

Emergency Department Use by Community-Dwelling Individuals With Dementia in the United States: An Integrative Review.

As part of the National Plan to Address Alzheimer's Disease, reducing potentially avoidable emergency department (ED) use by individuals with dementia has been identified as a component of enhancing the quality and efficiency of care for this population. To help inform the development of interventions to achieve this goal, an integrative review was conducted to: (a) compare rates and reasons for ED visits by community-dwelling individuals with and without dementia, considering also the effect of dementia subtype and severity; and (b) identify other risk factors for increased ED use among community-dwelling individuals with dementia. Nineteen articles met inclusion criteria. Individuals with dementia had higher rates of ED visits compared to those without dementia, although differences were attenuated in the last year of life. Increased symptoms and disability were associated with increased rates of ED visits, whereas resources that enabled effective management of increased need decreased rates. Gerontological nurses across settings are on the frontlines of preventing potentially avoidable ED visits by community-dwelling individuals with dementia through patient and family education and leadership in the development of new models of care. [Journal of Gerontological Nursing, 44(3), 23-30.].

The Current State of U.S. Geropsychiatric Graduate Nursing Education: Results of the National Geropsychiatric Graduate Nursing Education Survey.

Advanced Practice Registered Nurses (APRNs) must be prepared to care for the rapidly increasing numbers of older adults with mental health needs. All 363 graduate nursing programs in the United States were surveyed regarding the nature and extent of geropsychiatric nursing (GPN) content across program curricula and their perceptions of the influence that the APRN Consensus Model has exerted on preparing the next generation of APRNs to meet the growing needs of the older adult population. Of the 202 schools responding, 138 reported GPN content in one or more clinical programs, with the majority of content in non-PMHNP programs. Only 17 schools reported offering a GPN program, track, or minor. The majority of schools (n = 169) perceived that they were adequately well-prepared to meet the APRN Consensus Model's guidelines regarding inclusion of aging-related didactic and clinical educational experiences in all APRN education programs; nearly two thirds (n = 132) perceived a moderate to significant influence of the Consensus Model on institutional infusion of GPN into curricula. Compared with a similar survey 10 years ago, there was little change in the proportion of schools reporting GPN in clinical programs and few schools provide GPN programs, tracks, or minors. Implications for nursing education and practice are discussed.

Pain in Community-Dwelling Older Adults with Dementia: Results from the National Health and Aging Trends Study.

OBJECTIVES: To report prevalence, correlates, and medication management of pain in community-dwelling older adults with dementia. DESIGN: Cross-sectional. SETTING: In-person interviews with self- or proxy respondents living in private residences or non-nursing home residential care settings. PARTICIPANTS: Nationally representative sample of community-dwelling Medicare beneficiaries aged 65 and older enrolled in the National Health and Aging Trends Study 2011 wave. MEASUREMENTS: Dementia status was determined using a modified previously validated algorithm. Participants were asked whether they had had bothersome and activity-limiting pain over the past month. A multivariable Poisson regression model was used to determine the relationship between bothersome pain and sociodemographic and clinical characteristics. RESULTS: Of the 7,609 participants with complete data on cognitive function, 802 had dementia (67.2% aged ≥80, 65.0% female, 67.9% white, 49.7% proxy response, 32.0% lived alone, 18.8% lived in residential care); 670 (63.5%) participants with dementia experienced bothersome pain, and 347 (43.3%) had pain that limited activities. These rates were significantly higher than in a propensity score-matched cohort without dementia (54.5% bothersome pain, P < .001, 27.2% pain that limited activity, P < .001). Proxies reported slightly higher rates of pain than self-respondents, but differences were statistically significant only for activity-limiting pain (46.6% proxy vs 40.1% self, P = .03). Correlates of bothersome pain included arthritis, heart and lung disease, less than high school education, activity of daily living disability, depressive and anxiety symptoms, and low energy. Of those reporting pain, 30.3% stated that they rarely or never took any medications for pain. CONCLUSION: Community-living older adults with dementia are at high risk of having pain. Creative interventions and programs are needed to manage pain adequately in this vulnerable population.

The effects of cognitive impairment on nursing home residents' emergency department visits and hospitalizations.

BACKGROUND: Little is known about the relationship of cognitive impairment (CI) in nursing home (NH) residents and their use of emergency department (ED) and subsequent hospital services. METHODS: We analyzed 2006 Medicare claims and resident assessment data for 112,412 Medicare beneficiaries aged >65 years residing in US nursing facilities. We estimated the effect of resident characteristics and severity of CI on rates of total ED visits per year, then estimated the odds of hospitalization after ED evaluation. RESULTS: Mild CI predicted higher rates of ED visits relative to no CI, and ED visit rates decreased as severity of CI increased. In unadjusted models, mild CI and very severe CI predicted higher odds of hospitalization after ED evaluation; however, after adjusting for other factors, severity of CI was not significant. CONCLUSIONS: Higher rates of ED visits among those with mild CI may represent a unique marker in the presentation of acute illness and warrant further investigation.