Care-resistant Behavior Trajectories during Mouth Care among Nursing Home Residents with Dementia.

BACKGROUND AND OBJECTIVES: This study examined day-to-day variation in care-resistant behaviors (CRBs) exhibited by persons living with dementia during mouth health care and the potential influence of time-of-day on CRB trajectories. RESEARCH DESIGN AND METHODS: A secondary analysis was conducted on a sample of 75 nursing home-dwelling persons living with dementia who exhibited CRBs during mouth care activities. Over 21 days, CRBs were measured using the revised Resistiveness to Care Scale (RTC-r) during morning and afternoon mouth care sessions. Group-based Trajectory Modeling was used to identify trajectory patterns and assess differences between morning and afternoon CRB patterns. RESULTS: Three trajectory patterns were identified: morning CRB trajectory patterns showed 50.6% of persons living with dementia had consistently low RTC-r scores, 37.5% of persons living with dementia exhibited fluctuating, moderate RTC-r scores, and 11.9% exhibited RTC-r scores that started high and then decreased over time. Similarly, CRB trajectory patterns during afternoon mouth care showed a consistently low RTC-r score for 54.5% and a fluctuating moderate RTC-r score for 38.6% of persons living with dementia. However, the third CRB trajectory group followed a high-increasing trajectory, with RTC-r scores starting high and continuing to increase for 6.9% of persons living with dementia. DISCUSSION AND IMPLICATIONS: CRBs are dynamic and vary within days and over time; however, the time of the day is often not considered in interventions to manage CRBs. Thus, it is important to consider the timing of providing mouth care for persons living with dementia. Based on the characteristics of the trajectories, we suggest that morning mouth activities may be more efficient.

Too Soon or Too Late: Rethinking the Significance of Six Months When Dementia Is a Primary Diagnosis.

Cultural narratives shape how we think about the world, including how we decide when the end of life begins. Hospice care has become an integral part of the end-of-life care in the United States, but as it has grown, its policies and practices have also imposed cultural narratives, like those associated with the "six-month rule" that the majority of the end of life takes place in the final six months of life. This idea is embedded in policies for a range of care practices and reimbursement processes, even though six months is not always a meaningful marker. In the case of people living with advanced dementia, six months is both too early in the trajectory to facilitate conversations and too late in the trajectory to ensure decision-making capacity. This essay encourages scholars and policy-makers to consider how cultural narratives may limit what they think is possible in care for people living with dementia.

What Can the Health Humanities Contribute to Our Societal Understanding of and Response to the Deaths of Despair Crisis?

Deaths of Despair (DoD), or mortality resulting from suicide, drug overdose, and alcohol-related liver disease, have been rising steadily in the United States over the last several decades. In 2020, a record 186,763 annual despair-related deaths were documented, contributing to the longest sustained decline in US life expectancy since 1915-1918. This forum feature considers how health humanities disciplines might fruitfully engage with this era-defining public health catastrophe and help society better understand and respond to the crisis.

Psychosocial outcomes in young adolescents with type 1 diabetes participating in shared medical appointments.

For youth with type 1 diabetes (T1D), the early adolescent period is associated with worsening diabetes management and high rates of negative psychosocial issues, including depressive symptoms and family conflict. Alternative clinical models may help improve both diabetes and psychosocial outcomes. Our study aims to investigate whether Team Clinic, a shared medical appointment model developed specifically for adolescents with T1D, will improve psychosocial outcomes for middle school-aged youth. Youth with T1D, 11-13 years of age, and their caregivers, participated in a randomized controlled trial comparing Team Clinic to traditional clinic visits (control group). Diabetes characteristics were obtained at every visit. Participants and caregivers completed depression screening and family conflict questionnaires at baseline and end of study. Changes in mean scores on clinical and psychosocial outcomes from baseline to end of study were compared between groups using linear mixed-effects models. Eighty-six youth (51% female; 74% White; 10% Hispanic) completed at least one visit during the 12-month study period. At the end of the study, control group participants reported increases in Emotional Problems compared to Team Clinic participants, including higher levels of Negative Mood/Physical Symptoms (p = 0.02). Team Clinic participants reported reduced family conflict surrounding diabetes at study end, compared to control group participants (p = 0.03). Caregivers did not report change in depressive symptoms or family conflict during the study. Hemoglobin A1C levels did not change over time in either group. Participation in Team Clinic was associated with improved psychosocial outcomes in middle school-aged participants with T1D.

Hospital and Health System Policies Concerning the California End of Life Option Act.

Background: The End of Life Option Act (EOLOA) legalized physician aid in dying for competent, terminally ill Californians in 2016. The law allows clinicians, hospitals, and health systems to decide whether to participate. About 4 in 10 California hospitals permit the EOLOA, but little is known about their approaches and concerns. Objective: Describe hospital EOLOA policies and challenges. Design and Measurements: Survey study of hospitals in California, administered September 2017 to March 2018. We describe hospital policies concerning the EOLOA and perform thematic analysis of open-ended questions about challenges, including availability of providers, process of implementing EOLOA, experiences of distress by providers and patients, and questions about medications. Results: Of 315 hospitals surveyed, 270 (86%) responded. Every surveyed hospital had established a position on the EOLOA. Among hospitals permitting EOLOA, 38% required safeguards not required in the law, 87% provided for referral to another provider if the patient's physician did not participate, and 65% counseled staff, if needed. Among hospitals not permitting the EOLOA, nearly all allowed providers to follow patients choosing to pursue the EOLOA elsewhere and most permitted a provider to refer to another provider or system. Most hospitals expressed concerns about implementation of the EOLOA and interest in sharing promising practices. Conclusions: This survey of California hospitals demonstrates considerable heterogeneity in implementing the EOLOA. For many Californians, access to the EOLOA depends on where one receives medical care. Implementation would be improved by hospitals and health systems sharing promising practices.

Changes in Quality of Life Among Enrollees in Hennepin Health: A Medicaid Expansion ACO.

Despite limited program evaluations of Medicaid accountable care organizations (ACOs), no studies have examined if cost-saving goals negatively affect quality of life and health care experiences of low-income enrollees. The Hennepin Health ACO uses an integrated care model to address the physical, behavioral, and social needs of Medicaid expansion enrollees. As part of a larger evaluation, we conducted semistructured interviews with 35 primary care using Hennepin Health members enrolled for 2 or more years. Using fuzzy set qualitative comparative analysis, we assessed enrollee complexity and use of the care model and improvements in quality of life. We found improved quality of life was consistently associated with strong bonds to primary care, consistent mental health care, and support from extended care team members. Comprehensive, integrated care models within ACOs may improve quality of life for low-income Medicaid enrollees through coordinated primary and mental health care.

Home Telemedicine (CoYoT1 Clinic): A Novel Approach to Improve Psychosocial Outcomes in Young Adults With Diabetes.

PURPOSE: To assess the impact of a home telemedicine clinic model (CoYoT1 Clinic) on psychosocial and behavioral outcomes designed for young adults (YAs) with type 1 diabetes (T1D). METHODS: YAs self-selected to participate in the CoYoT1 Clinic or serve as a usual care control. CoYoT1 Clinic visits consisted of an individual appointment with a provider and a group appointment with other YAs with T1D using home telemedicine. Psychosocial and behavioral functioning was assessed by 4 measures: Diabetes Distress Scale, Self-Efficacy for Diabetes Scale, Self-Management of Type 1 Diabetes in Adolescence Scale, and Center for Epidemiologic Studies Depression Scale. RESULTS: Forty-two patients participated in the CoYoT1 Clinic and 39 patients served as controls. CoYoT1 participants reported lower levels of distress (P = .03), increased diabetes self-efficacy (P = .01), and improved ability to communicate with others about diabetes (P = .04) over the study period compared to controls. YA males in the control group reported increases in depressive symptoms (P = .03) during the study period, but CoYoT1 participants showed no changes. CONCLUSION: Group home telemedicine for YAs with T1D positively affects diabetes distress, self-efficacy, and diabetes-specific communication. These positive findings have the potential to also affect the YAs' long-term diabetes outcomes. Further investigation of the model is needed.