Background Public health restrictions due to the COVID‐19 (SARS CoV‐2) pandemic have disproportionately affected informal caregivers of people living with long term health conditions. We aimed to explore levels of care burden, loneliness, and social isolation among caregivers of people with enduring physical and brain health conditions in English‐speaking regions worldwide, by investigating outcomes before and during the COVID‐19 pandemic. Methods A cross‐sectional anonymous online survey data from 2287 English‐speaking caregivers of people with long term health conditions from four English‐speaking regions (UK, Ireland, USA, New Zealand) included measures of care burden, loneliness, and social isolation, reported before and during the COVID‐19 pandemic. Analyses were descriptive, followed by an ordinal regression model for predictors of burden. Results Compared to pre‐pandemic levels, all caregivers experienced a significant increase in burden, loneliness, and isolation. Caregivers of people with both brain health and physical conditions were the most burdened and had the highest levels of loneliness and isolation compared to caregivers of people with either a brain health or physical condition only. The increase in care burden among caregivers of people with brain health challenges was associated with caregiver's gender, moderate and severe emotional loneliness, magnitude and frequency of isolation during the pandemic, and care circumstances (cohabitation with the care recipient, restrictions on the ability to provide care). Conclusions Health and social care interventions should target caregivers' care circumstances and psychological outcomes, particularly in women, accounting for the significant additional burden of care, loneliness, and isolation resulting from pandemic‐related restrictions.

Background: During the COVID-19 pandemic, loneliness has increased in the general population due to government measures to contain the spread of the disease. In Latin America (LA), caregiving is most often delivered informally by family members Family caregivers often face mental health challenges linked to their caregiving role and their social context. Pandemic-related social restrictions have been especially detrimental for older people with dementia or other brain health challenges, as well as their family caregivers. We aimed to investigate the associations of loneliness, social isolation and care burden in these family caregivers. Method:We undertook a cross-sectional survey of over 300 informal caregivers of people with dementia or enduring mental health problems living in 4 Latin American countries, Mexico, Brazil, Chile, and Peru. We categorized loneliness into 3 groups 'low' , 'moderate' and 'severe loneliness' . Here, we analyzed factors related to changes in the prevalence of moderate and severe loneliness before and during the pandemic using a longitudinal multinomial logistic regression model.Result: During the pandemic, there was a significant increase in loneliness prevalence (p<.001) among caregivers in Latin America, with more people having moderate (6.25% pre-pandemic; 17.67% mid-pandemic) and severe loneliness (2.78% pre-pandemic; 15.19% mid-pandemic). Gender differences in the prevalence of loneliness or higher levels of loneliness among dementia caregivers compared to caregivers of other conditions were not seen. The regression model revealed that the increment in risk for moderate loneliness during the pandemic was related to caregivers' age, level of education, and social contact/isolation. Increased risk for severe loneliness was related to caregivers' social contact during the pandemic and perceived mental health.

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: Public health restrictions due to the COVID-19 pandemic have affected care partners of people living with dementia and/or mental health conditions. This qualitative study explores care partners' ability to offer care, and changes and interruptions to care provision during the period of the COVID-19 pandemic (2020) in English-speaking regions worldwide. Method:As part of an international cross-sectional online survey, qualitative data were collected from over 1,000 English-speaking care partners of people living with dementia and/or mental health conditions.Responses to an open-ended question about ability to care were coded and analysed thematically. The analysis was undertaken by three independent interdisciplinary coding dyads.Result: A number of main themes and subthemes were generated through the analysis.Reduced in-person contact with the person with a brain health condition and restrictions in health and social care services created practical, psychological and emotional impacts for care partners. The lack of adequate information from health/social care services, deterioration in the condition of the person living with a brain health condition, and additional care hours/duties were identified. Care partners also mentioned the fear of virus transmission and increased awareness of public health measures as factors that changed or interrupted their ability to provide care. Conclusion:The ability of care partners to provide care was changed or interrupted, and disruption to routines and services available impacted on their well-being. These findings reflect the complexity of the care partner role and highlight the importance of supporting care partners, in particular during periods of service restrictions such as those experienced as a result of the pandemic. Findings will be of interest to policymakers and service providers.

Background: Informal caregivers may experience high levels burden. Prior to COVID-19, loneliness and social isolation, and especially the discordance between them, were recognized for rapid aging-related cognitive decline. The COVID-19 has significantly increased social isolation and loneliness in caregivers. Thus, we aimed to explore the variables that were associated with higher care burden among all caregivers and only among caregivers for people living with dementia, and whether the increased burden could be associated with a discrepancy between loneliness and social isolation.Method: 'Comparing Loneliness and Isolation in COVID-19' was an online global survey of over 20,000 respondents, including 5243 caregivers across 50 countries with enduring brain or/and physical health conditions. We first used a multilevel modelling to identify risk factors associated with higher burden. Then, we defined profiles of discrepancy between loneliness and social isolation, based on the differences between standardized score on a scale of loneliness and of social connectedness and estimated the association between the discrepancy and higher burden.Result: In our sample, 74% of caregivers were female, 44% were caring for people with dementia, and 22% for people with multiple conditions, including dementia. The most prevalent age group was 60-69 years old. Factors significantly associated with higher care burden were being female, having poorer financial situation, worse mental health during the pandemic, caring for people with dementia or intellectual disabilities, caring in the same home, being diagnosed with COVID, and changes of care abilities. 40% of caregivers consistently reported high level of loneliness and social isolation, 38% reported consistent lower levels of both, and two groups reported discordance (low levels of loneliness and high social isolation in 13%; high levels of loneliness and mild social isolation in 12%). The latter group was at the highest risk of self-reported increased and intense care burden. Conclusion:This represents the largest, most widespread survey on the impact of the COVID-19 pandemic on caregivers of people with long-term conditions to date and