COVID-19 Silver Linings - Experience of Spousal Caregivers of Persons with Dementia Engaged in Support Program

Abstract Caring for a person with dementia (PWD) has been consistently associated with negative effects on health, including increases in caregiver depression, anxiety, and burden. Emerging studies have shown that the COVID-19 pandemic has increased these factors due to reported increases in caregiver workload and cognitive and behavioral symptoms of the PWD. We interviewed 10 spousal caregivers of PWD from the NYU Langone Alzheimer’s Disease and Related Dementias Family Support Program in Summer 2020 during the COVID-19 pandemic in order to gain feedback about their experiences during the pandemic and the transition from in-person to videoconferencing that could be used to improve services and support. Caregivers discussed the challenges faced during the pandemic but also the unique opportunities the situation presented. We report here on those positive aspects of COVID-19 from the perspective of the caregivers we interviewed. Methods Interviews of caregivers residing with their spouses in the New York City area were conducted via videoconferencing, transcribed, deidentified, and analyzed using framework analysis methods. Results We found that caregivers reported some positive reaction to videoconferencing that included increased support group cohesion, increased convenience, feeling less obligated to participate in events, and new opportunities for social contact. Participants also discussed positive inter-couple relationship changes such as increased quality time spent together. Our findings resonate with a body of literature focused on understanding the positive aspects of caregiving. Understanding the full presentation of the caregiver experience, including both positive and negative aspects, is important for developing interventions and resources for this unique group.

2. UT Health San Antonio, San Antonio, Texas, United States For decades, doctors, psychologists, and psychiatrists alike have struggled to treat the symptomatic effects of Huntington's disease.Huntington's disease is an autosomal dominant brain disease that results in the deterioration of a person's physical and mental state.Once a person inherits the disease, they end up dying from it more often than not.At present, there are 41,000 Americans with symptomatic Huntington's disease, and 200,000 more are currently at-risk of inheriting the disease.Given its 50/50 chance of inheritance, there seems to be no end in sight to this degenerative ailment.My research study, however, will show that with a more robust approach, finding a cure for this disease is possible.Ultimately, the aim of this project was to test an already established model in Drosophila melanogaster regarding the "huntingtin" protein responsible for Huntington's disease.This was achieved by first demonstrating that the flies which were modified to produce huntingtin could, in fact, produce the protein.Secondly, an experimental process was created to configure a system through which the amount of protein produced by each fly could be quantified.This quantification was vital in creating a baseline that would allow for the identification of potential therapeutic treatments in the future.In short, by establishing a quantifiable model for huntingtin, this study will pave the way to new insights on huntingtin aggregation and the identification of possible treatments for Huntington's disease in the future.

CONVERGENT AND CONSTRUCT VALIDITY OF A CONVERSATION DIFFICULTIES OUTCOME MEASURE IN PRIMARY PROGRESSIVE APHASIA
Haylie Santos, 1 Angela Roberts, 1 Nathan Gill, 2 Elizabeth Salley, 2 Hui Zhang, 2 and Emily Rogalski, 2 , 1. Northwestern University, Evanston, Illinois, United States, 2. Northwestern University, Chicago, Illinois, United States Cognition and language changes, and their impacts on functional communication, are central to many dementias.Thus, functional communication, including conversation difficulties, is an important endpoint for clinical trials.To develop robust outcomes in primary progressive aphasia (PPA), a dementia characterized by communication impairments, we examined the convergent and construct validity of the Perception of Conversation Difficulties-Dementia Alzheimer's Type (PCI-DAT; Orange et al., 2009).The PCI-DAT is a care partner reported measure of conversation difficulties.Eighty-two care partners with a mean age of 64.8 years (SD=10.61;85% spouses, 5% adult children, 10% friends/siblings) whose mean relationship duration to the person with PPA was 39.1 (SD=15.1)years completed the study.Pearson's correlation indicated a significant, modest correlation (r=-0.54,p<0.0001) between the PCI-DAT Perception of Conversation Difficulties subscale and the Communication Effectiveness Index (Lomas et al., 1989) suggesting strong convergent validity.A Rasch analysis conducted on the same PCI-DAT subscale showed high person (0.92) and item (0.95) reliability indicating a robust overall scale structure that adequately evaluates various levels of conversation difficulty severity in PPA.Six items (27%) had minor 'fit' issues (defined by Wright and Linacre, 1994 as having infit statistics < 0.6 or > 1.4) relative to the underlying construct.Results suggest strong convergent and construct validity of the PCI-DAT in PPA and indicate items that will benefit from further development.Overall, our results suggest that the PCI-DAT holds promise for use as a functional communication endpoint in PPA clinical trials.Data for all five PCI-DAT subscales will be presented.David Camacho, 1 Yamile Marti, 2 Sunghwan Cho, 3  Thomas Buckley, 4 Julia Vazquez, 5 Denise Burnette, 6 and  Humberto Fabelo, 6 , 1 The COVID-19 pandemic poses serious physical and mental health risks for older adults worldwide.To develop culturally and contextually congruent services to mitigate these risks requires understanding their stress and coping processes, which remain understudied in Latin America.This study examines qualitative data from 51 adults aged 60 and over who participated in an ongoing study of older Puerto Ricans' knowledge, attitudes, and practices about COVID-19.Trained interviewers collected the data by telephone from January to August, 2021.Two-thirds of participants were female, 60% had less than high school education and 90% had poverty-level incomes.Drawing on Lazarus and Folkman's Stress and Coping Theory, we conducted a thematic analysis of responses to open-ended questions about the nature and extent of COVID-related stressors, stress management, and meanings and guidance they had gleaned from their experience.Participants perceived the pandemic as an added threat to ongoing chronic stressors (e.g., Hurricane Maria, poverty, political instability); disruptions in daily routines, family cohesion, and grief and loss processes; and increased isolation and loneliness.They reported using cognitive, behavioral, socioemotional and spiritual coping, including positive thinking, keeping occupied, relaxation, religious practices and, in a few cases, social media.Participants highlighted a revitalized appreciation for emotional qualities of relationships, freedom and life in general.Consistent with our guiding theory, cultural, contextual, religious, and socio-political factors shaped their appraisals of stress and their coping strategies.Future research should examine how these practices relate to health outcomes and quality of life and how they can inform effective, appropriate interventions.Caring for a person with dementia (PWD) has been consistently associated with negative effects on health, including increases in caregiver depression, anxiety, and burden.Emerging studies have shown that the COVID-19 pandemic has increased these factors due to reported increases in caregiver workload and cognitive and behavioral symptoms of the PWD.We interviewed 10 spousal caregivers of PWD from the NYU Langone Alzheimer's Disease and Related Dementias Family Support Program in Summer 2020 during the COVID-19 pandemic in order to gain feedback about their experiences during the pandemic and the transition from in-person to videoconferencing that could be used to improve services and support.Caregivers discussed the challenges faced during the pandemic but also the unique opportunities the situation presented.We report here on those positive aspects of COVID-19 from the perspective of the caregivers we interviewed.

COVID-19 SILVER LININGS -EXPERIENCE OF SPOUSAL CAREGIVERS OF PERSONS WITH DEMENTIA ENGAGED IN SUPPORT PROGRAM
Methods: Interviews of caregivers residing with their spouses in the New York City area were conducted via videoconferencing, transcribed, deidentified, and analyzed using framework analysis methods.
Results: We found that caregivers reported some positive reaction to videoconferencing that included increased support group cohesion, increased convenience, feeling less obligated to participate in events, and new opportunities for social contact.Participants also discussed positive intercouple relationship changes such as increased quality time spent together.Our findings resonate with a body of literature focused on understanding the positive aspects of caregiving.Understanding the full presentation of the caregiver experience, including both positive and negative aspects, is important for developing interventions and resources for this unique group.

COVID-19 VACCINES IN SKILLED NURSING FACILITIES: RECURRING INTERVIEWS WITH ADMINISTRATORS
Amy Meehan, 1 Joan Brazier, 1 Caroline Madrigal, 2 Renee Shield, 1 and Emily Gadbois, 1 , 1. Brown University, Providence, Rhode Island, United States, 2. Providence VA Medical Center, Providence VA Medical Center, Rhode Island, United States Skilled nursing facilities (SNFs) are on the front lines of changing policies regarding the COVID-19 pandemic.The most recent development is a potential vaccine mandate for staff working in SNFs.We use ongoing findings from 130 of 160 in-depth, semi-structured interviews in progress with administrators at 40 SNFs in eight diverse healthcare markets across the United States to understand the current landscape of COVID-19 in SNFs.Four repeated interviews at 3-month intervals provide a unique longitudinal perspective on the impact of COVID-19 and SNFs' response to vaccinations, including the vaccine mandate.Rigorous thematic analysis reveals insights into administrator responses and creative approaches to address vaccine hesitancy, and future expectations for SNF operations in light of the vaccine and the mandate.Administrators express cautious hope that the vaccine will allow SNFs to return to a new normal of daily life for residents in terms of family visitations, communal dining, and resident activities.Overriding questions include how to overcome persistent vaccine hesitancy from SNF staff who cite fear of side effects despite education initiatives and how to stem staff retirement or transition to other healthcare settings.SNFs represent a microcosm of the country's concerns as a whole.Insight into the evolving and complex dynamics shed important light on national trends and help provide solutions for moving forward.Findings from this study have implications for policymakers and SNF leadership as they consider ways to promote vaccination and retain staff amid vaccine mandates.

CROSS-VALIDATION OF THE FINANCIAL EXPLOITATION VULNERABILITY SCALE Juno Moray, and Peter Lichtenberg, Wayne State University, Detroit, Michigan, United States
Most of the available clinical tools that detect the experience of financial exploitation (FE) are not practical for use by the many professionals who work with older adults.The available measures are often time-consuming, require specialized training to administer, or focus exclusively on the cognitive aspects of financial decision-making.The need for a brief, standardized measure of contextual risk prompted the development of the Financial Exploitation Vulnerability Scale (FEVS;Lichtenberg et al., 2020).The purpose of this study was to cross-validate the FEVS as a psychometrically sound measure of contextual risk for FE.Participants were recruited from the community (n=95), and through a financial coaching service for older adults who had experienced a financial scam (n=21).A total of 114 older adults were recruited for the study, 33 who had experienced FE and 81 who had not.An independent samples t-test demonstrated that the FEVS total score successfully differentiated older adults based on the experience of financial exploitation.The FEVS total score was correlated with age, but no other demographic factors or collected neurocognitive measures.A ROC curve detecting FE analysis revealed an area under the curve of 0.68.Internal consistency of the FEVS was a=0.80.In a logistic regression model, only the FEVS and word-reading ability were related to FE.The results of this cross-validation study are very similar to the initial study, demonstrating that the FEVS is an accessible, theory-based tool that detects the experience of FE.