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BackgroundThe social and economic challenges of the COVID-19 pandemic greatly impacted people's physical and mental health. The majority of care for individuals with brain health challenges, including dementia and mental illness, is provided by informal family caregivers. The “Coping with Loneliness, Isolation and COVID-19” (CLIC) Global Caregiver Survey 2020 received responses from over 5,000 caregivers across 50 countries of people living with enduring brain and/or physical health conditions.AimThis study examined English-speaking caregivers of people with brain health challenges (dementia and mental health conditions) descriptions of changes and interruptions in their ability to provide care in the context of the COVID-19 pandemic.Materials and methodsQuantitative and qualitative data were collected as part of the large-scale CLIC Global Caregiver Survey. Data from over 900 English language respondents were analyzed using descriptive statistics and thematic content analysis. A multidisciplinary team of clinicians and health policy practitioners participated in team-based qualitative analyses.ResultsThe majority of respondents were from the United States (71% USA), female (83%) and care providers to people living with dementia (81%). Respondents reported concerns about their loved one's physical and mental health, the limited access to other caregiving sources and the limited opportunities to maintain personal wellbeing. Practical, social, psychological and emotional impacts affected their ability to offer care. There was clear evidence that the disruption to health and social care services—institutions, day care and home services impacted the ability to offer care.DiscussionThe pandemic may be seen as a catastrophic “event” that negatively impacted lives and livelihoods. A number of the social determinants of health were negatively impacted for the caregivers surveyed during this prolonged period. Caring for caregivers and supportive health and social care interventions are required to maintain the wellbeing of this informal workforce. This study represents the largest, cross-country survey on the impact of the COVID-19 pandemic on caregivers of people with brain health challenges to date; serving as an important resource for support agencies and to inform policy.

Background: Dementia with Lewy bodies (DLB) is an important cause of dementia with a range of clinical manifestations, including motor, neuropsychiatric, and autonomic symptoms. Compared with more common forms of dementia such as Alzheimer’s disease, DLB has been the focus of significantly fewer treatment studies, often with diverse outcome measures, making comparison and clinical implementation difficult. A core outcome set (COS) can address this by ensuring that data are comparable, relevant, useful, and usable for making the best healthcare decisions. Methods: Using a multi-stage approach, development of the DLB-COS will include the following stages: (1) A systematic review, following PRISMA guidelines to create an initial long list of outcomes; (2) A two-round online Delphi including clinicians, scientists, policymakers, and individuals with lived experience of DLB and their representatives; (3) An online consensus meeting to agree on the final core list of outcomes (the final DLB-COS) for use in research and clinical practice; (4) A literature search to identify appropriate measurement instruments for the DLB-COS outcomes; (5) A final consensus meeting of the professional stakeholders who attended the online consensus meeting to agree on the instruments that should be used to measure the outcomes in the DLB-COS; and (6) Global dissemination. Discussion: This is a multi-stage project to develop a COS to be used in treatment trials for DLB. A DLB-COS will ensure the selection of relevant outcomes and will identify the instruments to be used to measure DLB globally.

Background: Dementia with Lewy bodies (DLB) is an important cause of dementia with a range of clinical manifestations, including motor, neuropsychiatric, and autonomic symptoms. Compared with more common forms of dementia such as Alzheimer’s disease, DLB has been the focus of significantly fewer treatment studies, often with diverse outcome measures, making comparison and clinical implementation difficult. A core outcome set (COS) can address this by ensuring that data are comparable, relevant, useful, and usable for making the best healthcare decisions. Methods: Using a multi-stage approach, development of the DLB-COS will include the following stages: (1) A systematic review, following PRISMA guidelines to create an initial long list of outcomes; (2) A two-round online Delphi including clinicians, scientists, policymakers, and individuals with lived experience of DLB and their representatives; (3) An online consensus meeting to agree on the final core list of outcomes (the final DLB-COS) for use in research and clinical practice; (4) A literature search to identify appropriate measurement instruments for the DLB-COS outcomes; (5) A final consensus meeting of the professional stakeholders who attended the online consensus meeting to agree on the instruments that should be used to measure the outcomes in the DLB-COS; and (6) Global dissemination. Discussion: This is a multi-stage project to develop a COS to be used in treatment trials for DLB. A DLB-COS will ensure the selection of relevant outcomes and will identify the instruments to be used to measure DLB globally.

BackgroundCOVID-19-related restrictions led to an increase in overall loneliness and social isolation. Before the pandemic, care partners reported higher levels of loneliness and higher loneliness prevalence compared to non-care partners. Because of the spread and severity of the infections, and the access to support spread, we expect a different impact of the COVID-19 pandemic on LATAM care partners.ObjectivesTo describe the loneliness levels of LATAM caregivers and to identify socioeconomic and health factors associated.DesignAn international online cross-sectional survey for care partners, embedded within the ‘Coping with Loneliness and Isolation during COVID-19’ (CLIC) Study conducted between June 2020– and November 2020.SettingWe analysed data from 246 family care partners living in Latin American countries (46% Mexico, 26% Chile,18% Brazil, and 10% from Argentina, Peru, Venezuela, Panama, Guatemala y Costa Rica).MeasurementsWe assessed loneliness using the 6-items of De Jong Gierveld loneliness Scale. We described the levels of overall, emotional, and social loneliness pre and during Covid, and reported the distribution of care partners who improved, worsened or maintained their levels of loneliness. Moreover, we used longitudinal multiple linear regression models with bootstraps errors of 1,000 iterations to identify factors associated with the levels of overall, emotional, and social loneliness during the pandemic.ResultsParticipants were mostly women, 50 years and older, in a partnership, highly educated and with finances meeting their needs, with good to excellent physical and mental health. Among the total of care partners, 55% perceived higher overall loneliness, 56% higher emotional loneliness, and 21% higher social loneliness during the pandemic in comparison with pre-COVID-19 levels. Perceived mental health was associated with the overall, emotional, and social loneliness.ConclusionsRegardless of their living and health situation, during the pandemic, loneliness increased in all groups of care partners. These should be taken in consideration when planning public health approaches for crises such as pandemics or other large-scale disruptive events.