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

Abstract

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.

Care partner needs of people with neurodegenerative disorders: What are the needs, and how well do the current assessment tools capture these needs? A systematic meta‐review

“…Each person's unique caregiving context prompts different needs that may vary across situations and throughout the caregiving trajectory. Evidence suggests that there are differences in the way men and women are affected by the caregiving experience 4,44,53 . Women reported greater depression, stress, loneliness, and anxiety compared with men who provide care 4 .…”

“…Evidence suggests that there are differences in the way men and women are affected by the caregiving experience. 4,44,53 Women reported greater depression, stress, loneliness, and anxiety compared with men who provide care. 4 Importantly, these gender differences were seen from early on in the caregiving role.…”

“…4,44,53 Women reported greater depression, stress, loneliness, and anxiety compared with men who provide care. 4 Importantly, these gender differences were seen from early on in the caregiving role. Women are more likely than men to take on the caregiving role and may also be juggling work, family responsibilities, and caregiving.…”

“…3 Emerging evidence highlights even further disproportional effect on care partners of people living with dementia caused by the public health restrictions due to the COVID-19 (SARS CoV-2) pandemic. 4 Here, we use the term 'care partner' to acknowledge the bidirectional partnership and caring relationship between the person receiving care and the person providing it. 5 Eilers (2013) corroborated this notion and described that the care partnership builds on pillars of trust, equality and shared experience.…”

“…The negative impact on care partners, particularly once dementia emerges, is among the greatest of all caregiving groups 3 . Emerging evidence highlights even further disproportional effect on care partners of people living with dementia caused by the public health restrictions due to the COVID‐19 (SARS CoV‐2) pandemic 4 …”