Abraham A. Brody

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The objective of this study was to characterize multiple chronic conditions (MCCs) among seriously ill adults receiving palliative care at the end of life. A latent class analysis was conducted to identify latent subgroups of seriously ill older adults based on a baseline Charlson comorbidity index (CCI) measurement, a measure of comorbidity burden, and mortality risk. The three latent subgroups were: (1) low to moderate CCI with MCC, (2) high CCI with MCC, and (3) high CCI and metastatic cancer. The “low to moderate CCI and MCC” subgroup included older adults with chronic obstructive pulmonary disease (COPD), cardiovascular disease, congestive heart failure, myocardial infarction, dementia, diabetes, and lymphoma. A “high CCI and MCC” subgroup included individuals with severe illness including liver or renal disease among other MCCs. A “high CCI and metastatic cancer” included all participants with metastatic cancer. This study sheds light on the MCC profile of seriously ill adults receiving palliative care.

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Background: We sought to describe neuropsychiatric symptoms (NPS) among people living with dementia (PLWD) from diverse racial and ethnic groups receiving home health services while accounting for dementia severity, individual symptom prevalence, and neighborhood disadvantage. Methods: A prospective study using cross-sectional data from n = 192 PLWD receiving skilled home healthcare in New Jersey enrolled in the Dementia Symptom Management at Home Program trial. We prospectively measured symptom prevalence with the Neuropsychiatric Inventory Questionnaire and dementia severity using the Quick Dementia Rating System. A one-way ANOVA determined NPS prevalence by dementia severity (mild, moderate, severe). Fisher's exact tests were used to assess the association of individual symptom prevalence with race and ethnicity and cross tabs to descriptively stratify individual symptom prevalence by dementia severity among groups. A Pearson correlation was performed to determine if a correlation existed among neighborhood disadvantages measured by the Area Deprivation Index (ADI) state decile scores and NPS prevalence and severity. Results: Participants identified as non-Hispanic White (50%), non-Hispanic Black (30%), or Hispanic (13%). NPS were prevalent in 97% of participants who experienced 5.4 ± 2.6 symptoms with increased severity (10.8 ± 6.6) and care partner distress (13.8 ± 10.8). NPS increased with dementia severity (p = 0.004) with the greatest difference seen between individuals with mild dementia (4.3 ± 2.3) versus severe dementia (5.9 ± 2.3; p = 0.002). Few differences were found in symptom prevalence by racial and ethnic sub-groups. Nighttime behaviors were higher in non-Hispanic Black (78%), compared with non-Hispanic Whites (46%) with moderate dementia, p = 0.042. State ADI scores were not correlated with the number of NPS reported, or severity. Conclusions: NPS were prevalent and increased with dementia severity with commonalities among racial and ethnic groups with varying levels of neighborhood disadvantage. There is a need for effective methods for improving NPS identification, assessment, and management broadly for homebound PLWD.

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OBJECTIVE: This study aimed to examine the impact of COVID-19 on hospice Interdisciplinary team (IDT) members' self-reported stress and identify possible sources of moral distress. METHODS: A cross-sectional survey was conducted using Qualtrics to understand the impact of COVID-19 on quality improvement initiative implementation and hospice IDT members' general and dementia-specific care provision. Directed qualitative content analysis was used to analyze hospice IDT members' responses from five open-ended survey questions that were indicative of stress and possible moral distress. RESULTS: The final sample consisted of 101 unique respondents and 175 comments analyzed. Three categories related to sources of moral distress based on hospice IDT member survey responses were identified: (1) impact of telehealth, personal protective equipment (PPE), and visit restrictions on relationships; (2) lack of COVID-19-specific skills; and (3) organizational climate. Sources of moral distress were categorized in 40% of all responses analyzed. SIGNIFICANCE OF RESULTS: This study is one of the first to document and confirm evidence of potential stress and moral distress amongst hospice IDT members during COVID-19. It is imperative given the possible negative impact on patient care and clinician well-being, that future research and interventions incorporate mechanisms to support clinicians' emotional and ethical attunement and support organizations to actively engage in practices that address clinician moral distress resulting from restrictive environments, such as the one necessitated by COVID-19.

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In the current study, we conducted one-on-one interviews with primary care providers (PCPs) and family care partners (FCPs) and held focus groups with interdis-ciplinary adult day service center (ADSC) staff to understand the perspectives of care providers across community settings regarding early warning signs of acute illnesses in persons living with dementia (PLWD). We used content analysis to analyze qualitative data. Warning signs of acute illnesses in PLWD fell into one of five categories, including new onset changes in (a) physical functions, (b) moods or be-haviors (psychological), (c) social interactions, (d) speech, or (e) appearance. FCPs (n = 11) focused on physical changes, whereas ADSC staff (n = 33) emphasized changes in speech and social interactions in addition to the other categories. Al-though ADSC staff and PCPs (n = 22) focused on changes in functions and moods, each group described these changes differently. ADSC staff possess rich information that can be used to identify acute changes in PLWD and describe a broader range of warning signs compared to PCPs and FCPs. FCPs may benefit from further training in distinguishing between normal disease progression and acute illness. Future research should focus on the implementation of standardized tools across community-based care providers to simplify the identification and reporting of early warning signs in PLWD.

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Objective: To investigate mental health needs and barriers to seeking mental health support in Medicaid-funded Assisted Living Facility (M-ALF). Design: A multimethod, qualitative-dominant descriptive design using questionnaires and semistructured interviews. Setting and Participants: The study occurred at a M-ALF in the Bronx, New York. A researcher in residence recruited 13 residents (11 Black or African American, 2 Asian) using purposive sampling. Methods: Demographic data and mental health indicators (depression, anxiety, stress, hopelessness) were measured with questionnaires (Center for Epidemiological Studies Depression Scale, Edmonton Symptom Assessment System, Perceived Stress Scale, Beck Hopelessness Survey) and analyzed with descriptive statistics. Interviews were conducted between June and November 2021, transcribed, and analyzed using conventional content analysis. Results: Thirteen residents (mean age: 73.4 years, mean length of stay: 3.5 years; range: 1.0-7.5) completed data collection. Quantitatively indicators of unmet mental health were common. Qualitatively, residents reported barriers to mental health access to address depression, anxiety, and substance use. This was accompanied by concerns surrounding loss of autonomy, mistrust for M-ALF organizational support, isolation and uncertainty about how to receive mental health support. Perspectives were shaped by past experiences with institutional living, serious illness, and being unhoused. Themes and subthemes were (1) mental health need (unmet mental health need, depression, and anxiety and seeking support through non–mental health resources) and (2) barriers to mental health support (dissatisfaction with M-ALF care, perceived threats to autonomy, desire for autonomy that leads to diminished care seeking). Conclusion and Implications: Residents of M-ALF have mental health needs for which care is stymied by loss of autonomy, lack of resources, and the M-ALF environment. Residents use unconventional resources to address needs that may be neither efficient nor effective. Novel mental health interventions and processes are needed to improve mental health access and should prioritize residents’ desire for autonomy and the unique circumstances of living in M-ALF.

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Context: Evaluation of usability and mobile health content is critical for ensuring effective implementation of technology utilizing interventions tailored to the needs of hospice care providers for people living with dementia in community-based settings. Objectives: To evaluate the usability, content, and “readiness to launch” of the Aliviado mobile health app for interdisciplinary team members participating in the Hospice Advanced Dementia Symptom Management and Quality of Life. Methods: Usability of the Aliviado app was assessed in 86 respondents with an adapted IBM Computer Usability Satisfaction Questionnaire following Hospice Advanced Dementia Symptom Management and Quality of Life training and implementation of the mobile app. Results: More than half of users receiving training employed the mobile app in practice. Users reported use as: Daily-6.3%, Weekly-39.6%, monthly-54.2%. The highest measured attributes were usefulness, value, and effectiveness. Over 90% deemed the app “ready to launch” with no or minimal problems. Conclusion: This study shows that a newly-developed mobile app is usable and can be successfully adopted for care of people living with dementia.