Research Priorities of Individuals and Caregivers With Lewy Body Dementia: A Web-based Survey.

INTRODUCTION: Lewy body dementia (LBD) is common, yet under-recognized and under-researched. To plan studies with the highest impact, engagement of the community personally affected by these conditions is essential. METHODS: A web-based survey of people living with LBD and current and former caregivers of people with LBD queried research priorities through forced ranking and exploration of burden of LBD symptoms. Specific caregiving needs in LBD and perceptions of research participation were also investigated. RESULTS: Between April 7, 2021 and July 1, 2021, 984 responses were recorded. Top research priorities included disease-modifying therapies and improved disease detection and staging. People with LBD were interested in pathophysiology and more bothered by motor symptoms; caregivers were interested in risk factors and symptomatic therapies and more bothered by neuropsychiatric symptoms. Few available LBD treatments and resources were rated as helpful, and many valuable services were never received. Previous participation in LBD research was infrequent, but interest was high. DISCUSSION: People with LBD and caregivers highlighted the need for research across all aspects of LBD, from pathophysiology and disease modification to prognosis, education, symptomatic treatments, and caregiver support. Funders should increase support for all aspects of LBD research to target the many needs identified by individuals and families living with LBD.

Aneurysm of the Splenomesenteric Portal Venous Confluence: A Case Report.

A 62-year-old Caucasian woman was found to have an aneurysm of the splenomesenteric portal venous confluence via computed tomography (CT) scan after presenting with left upper abdominal tenderness. Venous aneurysms typically occur in the popliteal, jugular, and saphenous veins, but visceral venous aneurysms are rare. These aneurysms most commonly arise from the main portal vein and the confluence of the splenic and superior mesenteric veins. There have been fewer than 50 reported cases of portal venous aneurysm. Evaluation involves imaging modalities such as ultrasound, CT, magnetic resonance imaging (MRI), and angiography. There is currently no clear guideline for management, but options include observation, resection, thrombectomy, or portal venous decompression.

Development and Validation of the Lewy Body Disease Caregiver Activities Scale.

Background and Purpose: Caring for someone with Lewy body disease (LBD) is difficult. This study describes the development and validity testing of the LBD Caregiver Activities Scale (LBD-CAS). Methods: Caregiver interviews informed the development of the LBD-CAS. Experts estimated the content validity of items (I-CVI) and provided feedback about the scale. Family caregivers evaluated items for face validity. Results: Expert I-CVI ratings yielded 49 items with scores of 0.83 or higher. Four items with I-CVI scores <.83 were retained due to conceptual significance. The overall scale CVI was 0.86. Items evaluated by caregivers for face validity showed excellent variability in responses, with no major ceiling or floor effects. Conclusions: LBD-CAS showed evidence of content and face validity for the assessment of activities performed by LBD caregivers. Further psychometric testing is recommended.

Stroke Family Caregiver Life Changes From the COVID-19 Pandemic.

ABSTRACT: BACKGROUND: Stroke family caregivers were already struggling with unmet needs and changes in their own lives from providing care. The COVID-19 pandemic added further stress and disruption to their lives. The purpose of this study was to describe life changes in 17 stroke family caregivers specifically resulting from the COVID-19 pandemic. METHODS: This study was conducted as a secondary data analysis from an ongoing randomized controlled clinical trial testing feasibility of the Telehealth Assessment and Skill-Building Kit (TASK III). Using a multimethod design, both quantitative and qualitative data were analyzed to determine caregiver life changes. Quantitative ratings regarding life changes were obtained using 17 items adapted specifically for COVID-19 from the Bakas Caregiving Outcomes Scale. Rigorous content analysis procedures for the qualitative data were guided by a start list of codes based on the 17 items, with additional themes possible. Representative quotes were selected based on author consensus. RESULTS: Findings revealed both negative and positive life changes from the COVID-19 pandemic. Negative life changes included such things as disrupted daily routines, limited access to healthcare providers and resources (eg, food, masks, hand sanitizers), reduced family and social contact and activities, decreased emotional well-being, and problems with performing caregiving activities for the survivor. Positive life changes were increased use of the Internet and videoconferencing, closer relationships with friends, and learning how to access needed resources in new ways. CONCLUSION: Stroke family caregivers experienced both negative and positive life changes specifically as a result of the COVID-19 pandemic. Responses further indicated that COVID-19 affected most caregivers in different ways and an individualized approach is needed in dealing with caregiver life changes.

Needs and Concerns of Lewy Body Disease Family Caregivers: A Qualitative Study.

Lewy body disease (LBD) is a devastating condition with cognitive and physical deficits that pose a challenge to family caregivers. The purpose of this study was to identify the needs and concerns of family caregivers of persons with LBD. A convenience sample of LBD caregivers were interviewed regarding their caregiving needs, concerns, strategies, and advice. A content analysis approach was used to organize data into themes from an existing needs and concerns framework. Findings included the need for more information about the disease, strategies for managing LBD-related emotions and behaviors, support and assistance with physical and instrumental care, and strategies for managing one's own personal responses to caregiving. Findings highlight the need for a Lewy body specific caregiver assessment tool and future caregiver interventions.

Maximizing an urban secondary and post-secondary partnership to align educational expectations and student success.

Students from public urban secondary schools in the United States are often academically underprepared for post-secondary education. There are multiple social and structural factors contributing to this including living in communities where there are high rates of poverty, insufficient funding for public urban schools, and lack of rigor in their curriculum. Urban public post-secondary institutions struggle to bridge the gap to support students who are underprepared and in need of educational, financial, and social assistance. The purpose of this paper is to describe a partnership that was created between a public urban high school and a neighboring public urban university to address the issues underrepresented racially and ethnically (URE) diverse students encounter in order to not only better prepare them for the transition to post-secondary education, but to help them succeed once they arrive on campus. This partnership demonstrates that community cooperation to bridge the gap to support students who are underprepared is possible and benefits everyone involved. Preparing urban students for the successful transition to post-secondary education, particularly in the area of health professions can have a long-term impact on reducing racial inequities in health care.

The University of Cincinnati College of Nursing Case Study: Bias and Discrimination in the Nursing Learning Environment.

The purpose of this case study is to outline strategies employed by the University of Cincinnati's College of Nursing (CoN) to increase underrepresented racial and ethnic (URE), and economically and educationally disadvantaged student acceptance, presence, inclusion, and success. The case study method was used to examine strategies used at the CoN to address bias and discrimination, identify student success strategies for URE students, and outline college initiatives to facilitate an inclusive environment. CoN leadership has instituted several programs involving faculty and students in efforts to decrease bias and discrimination and promote inclusion. They continue to engage faculty and others in adding to and improving their efforts. This is a process of culture change and must involve everyone. CoN leadership is committed to both demonstrating by example and holding all accountable for progressively improved continued efforts to create a more inclusive environment.