Care burden, loneliness, and social isolation in caregivers of people with physical and brain health conditions in English-speaking regions: Before and during the COVID-19 pandemic.

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.

COVID-19-related loneliness and social isolation in caregivers of people with brain health challenges: The CLIC-Caregiver Global Survey

Background Prior to COVID-19, >90% of caregivers of people with brain health challenges (dementia, mental ill health, intellectual disability) experienced high levels of distress, burden, loneliness and social isolation. The COVID-19 pandemic has significantly increased these impacts, particularly since these caregivers are often older and physically vulnerable themselves. The aim of this cross-sectional study is to explore coping and caregiver burden, loneliness and social isolation in caregivers of people with brain health challenges during the COVID-19 pandemic. Method CLIC-Caregiver was a cross-sectional, online, and global survey (June 2nd - November 15th, 2020) using self-administered questionnaires directed at informal caregivers of people with long-term brain health challenges. The study was embedded within a larger survey of loneliness and social isolation for general public (?Comparing Loneliness and Isolation in COVID-19? (CLIC)), including validated loneliness and isolation tools. Translated into ten different languages such as Arabic, French, Romanian, etc, the survey was disseminated over 100 countries. Respondents were included in the CLIC-caregiver sub-study if they answered yes to the question ?Do you provide care and support to a family member or friend with a long-term or life-limiting health problem or disability (including mental health)?. The CLIC project received the initial global ethical approval from Ulster University. The data were fully anonymized. Result From the CLIC main study, 5243 (25%) identified themselves as caregivers. This proportion varied in different countries, from 12 % in Romania to 65% in France. 2323 (44%) had care recipients with dementia, 1761 with physical conditions (disability or long-term illness), 832 with enduring mental health problems, and 404 with intellectual disability. Measures of caregiver burden, loneliness and social isolation will be compared across geographic regions, sociodemographic factors, and risk factors for poor outcomes sought. Findings will be distributed to relevant stakeholders in the form of a project report, with region and country-specific outcomes. This will support recommendations and actions supporting caregivers of people with brain health challenges. 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. It will be an important resource for support agencies and to inform policy.