ABSTRACT
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(s): 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(s): 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(s): 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. Copyright © 2022 the Alzheimer's Association.
ABSTRACT
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(s): '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(s): 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(s): 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 reflects the importance of capturing the nuances in the relationship between loneliness and social isolation in caregivers. It will be an important resource for support agencies and to inform policy. Copyright © 2022 the Alzheimer's Association.