End-of-Life Experiences Within a Dementia Support Program During COVID-19: Context and Circumstances Surrounding Death During the Pandemic.

Background: Persons with dementia (PWD) and their caregivers are uniquely impacted by the COVID-19 pandemic, including higher risk of mortality for PWD. Objectives: To describe the context and circumstances of deaths of PWD within a dementia support program during the COVID-19 pandemic. Design: Retrospective data collection of PWD deaths between March 1, 2020 and February 28, 2021. Setting/Subjects: Decedents enrolled in Care Ecosystem, a multidisciplinary team model for dementia care at University of California San Francisco, Ochsner Health, and UCHealth. Measurements: Using mixed methods, we analyzed data using descriptive measures and team-based thematic analysis to understand the end-of-life (EOL) experience of PWD-caregiver dyads. Results: Twenty-nine PWD died across three sites. Almost half (45%) were between ages 70-79 and 12 (41%) were women. Eighteen (62%) died at a private residence; two died in the hospital. Hospice was involved for 22 (76%) patients. There were known causes of death for 15 (53%) patients. Only two deaths were directly related to COVID-19 infection. Social isolation was perceived to have a high or very high impact for 12 (41%) decedents. Four qualitative themes were identified: (1) isolation due to the pandemic, (2) changes in use of dementia supports and resources, (3) impact on goals of care decisions, and (4) communication challenges for EOL care coordination. Conclusion: Among PWD and caregivers enrolled in a dementia support program, the COVID-19 pandemic had direct and indirect influences on mortality and EOL experiences of PWD. Caregivers' experiences of caring, decision making, and bereavement were also affected.

The 5-Cog paradigm to improve detection of cognitive impairment and dementia: clinical trial protocol.

Cognitive impairment related to dementia is under-diagnosed in primary care despite availability of numerous cognitive assessment tools; under-diagnosis is more prevalent for members of racial and ethnic minority groups. Clinical decision-support systems may improve rates of primary care providers responding to positive cognitive assessments with appropriate follow-up. The 5-Cog study is a randomized controlled trial in 1200 predominantly Black and Hispanic older adults from an urban underserved community who are presenting to primary care with cognitive concerns. The study will validate a novel 5-minute cognitive assessment coupled with an electronic medical record-embedded decision tree to overcome the barriers of current cognitive assessment paradigms in primary care and facilitate improved dementia care.

Dementia is common, though under-recognized, in older adults (OAs). Primary care providers (PCPs) miss opportunities to help patients and their families manage the disease because of failure to, or delay to, make an appropriate diagnosis. Black and Hispanic OAs are more likely than White OAs to experience delayed diagnosis. Most available memory tests are too long for practical use by PCPs, and are ill suited to patients of diverse language, cultural and educational backgrounds. Studies have shown that even when patients test positive for dementia in primary care, PCPs often do not take follow-up action. Our improved memory test, the 5-Cog, is brief (5 min), not biased by language issues (uses pictures and symbols instead of words), and simple (doesn't require expensive technology and complex staff training). The 5-Cog is paired with a clinical decision support tool, providing tailored recommendations directly into the patient's medical record, and making it easier for PCPs to take appropriate action. This study will evaluate whether the 5-Cog paradigm results in improved dementia care.

Cognitive dysfunction following COVID-19 infection.

The coronavirus (COVID-19) pandemic is still evolving, causing hundreds of millions of infections around the world. The long-term sequelae of COVID-19 and neurologic syndromes post COVID remain poorly understood. The present study aims to characterize cognitive performance in patients experiencing cognitive symptoms post-COVID infection. Patients evaluated at a post COVID clinic in Northern Israel who endorsed cognitive symptoms were referred for neurologic consultation. The neurologic work-up included detailed medical history, symptom inventory, neurological examination, the Montreal Cognitive Assessment (MoCA), laboratory tests and brain CT or MRI. Between December 2020 and June 2021, 46 patients were referred for neurological consultation (65% female), mean age 49.5 (19-72 years). On the MoCA test, executive functions, particularly phonemic fluency, and attention, were impaired. In contrast, the total MoCA score, and memory and orientation subscores did not differ from expected ranges. Disease severity, premorbid condition, pulmonary function tests and hypoxia did not contribute to cognitive performance. Cognitive decline may affect otherwise healthy patients post-COVID, independent of disease severity. Our examination identified abnormalities in executive function, attention, and phonemic fluency. These findings occurred despite normal laboratory tests and imaging findings.

Responding to the Needs of Persons Living With Dementia and Their Caregivers During the COVID-19 Pandemic: Lessons From the Care Ecosystem.

Background and Objectives: The coronavirus disease 2019 (COVID-19) pandemic created challenges for persons with dementia, their caregivers, and programs that support them. The Care Ecosystem (CE) is a model of dementia care designed to support people with dementia and their family caregiver dyads through ongoing contact with a care team navigator (CTN) and an expert clinical team. CTNs provide support, education, and resources and help dyads manage dementia-related concerns as they evolve over the course of the disease. We aimed to understand how the CE responded to the needs of dyads during the initial 3 months of the COVID-19 pandemic. Research Design and Methods: We conducted a survey and qualitative interviews with staff members from 4 established CE programs located in 4 different states to explore (a) challenges dyads voiced during the pandemic, (b) CE staff approaches to addressing the needs of dyads, and (c) programmatic challenges faced and lessons learned. Findings: Nine staff members from 4 CE programs with an active collective caseload of 379 dyads were interviewed. Themes were identified that included dyad concerns regarding fear of illness, changing attitudes toward long-term care, decreased availability of services and resources, and impacts on patient and caregiver health and well-being. Programmatic challenges included maintaining effective communication with dyads and program staff, technological readiness, workflow restructuring, and program sustainability. Discussion and Implications: Approaches in supporting people with dementia and their caregivers should demonstrate flexibility, responsivity, and creativity, and these findings provide insight for understanding how dementia care programs can be positioned to offer continuous support for this vulnerable population.

Dementia caregiving across Latin America and the Caribbean and brain health diplomacy.

The prevalence of dementia in Latin America and the Caribbean is growing rapidly, increasing the burden placed on caregivers. Exacerbated by fragile health-care systems, unstable economies, and extensive inequalities, caregiver burden in this region is among the highest in the world. We reviewed the major challenges to caregiving in Latin America and the Caribbean, and we propose regional and coordinated actions to drive future change. Current challenges include the scarcity of formal long-term care, socioeconomic and social determinants of health disparities, gender-biased burdens, growing dementia prevalence, and the effect of the current COVID-19 pandemic on families affected by dementia. Firstly, we propose local and regional short-term strategic recommendations, including systematic identification of specific caregiver needs, testing of evidence-based local interventions, contextual adaptation of strategies to different settings and cultures, countering gender bias, strengthening community support, provision of basic technology, and better use of available information and communications technology. Additionally, we propose brain health diplomacy (ie, global actions aimed to overcome the systemic challenges to brain health by bridging disciplines and sectors) and convergence science as frameworks for long-term coordinated responses, integrating tools, knowledge, and strategies to expand access to digital technology and develop collaborative models of care. Addressing the vast inequalities in dementia caregiving across Latin America and the Caribbean requires innovative, evidence-based solutions coordinated with the strengthening of public policies.