Informal caregivers during the COVID-19 pandemic perceive additional burden: findings from an ad-hoc survey in Germany

Abstract

Background While the relation between care involvement of informal caregivers and caregiver burden is well-known, the additional psychosocial burden related to care involvement during the COVID-19 pandemic has not yet been investigated. Methods A total of 1000 informal caregivers, recruited offline, participated in a cross-sectional online survey from April 21 to May 2, 2020. Questionnaires were used to assess COVID-19-specific changes in the care situation, negative feelings in the care situation, problems with implementation of COVID-19 measures, concerns/excessive demands, loss of support, change in informal caregivers’ own involvement in care and problems with provision, comprehension & practicability of COVID-19 information, and to relate these issues to five indicators of care involvement (i.e., being the main caregiver, high expenditure of time, high level of care, dementia, no professional help). Binomial and multiple regression analyses were applied. Results Across indicators of care involvement, 25.5–39.7% reported that the care situation rather or greatly worsened during the COVID-19 pandemic, especially for those caring for someone with dementia or those usually relying on professional help. In a multiple regression model, the mean number of involvement indicators met was associated with age (β = .18; CI .10–.25), excessive demands (β = .10, CI .00–.19), problems with implementation of COVID-19 measures (β = .11, CI .04–.19), an increase in caregiving by the informal caregivers themselves (β = .14, CI .03–.24) as well as with no change in the amount of caregiving (β = .18, CI .07–.29) and loss of support (β = −.08, CI −.16–.00). No significant associations with the mean number of involvement indicators met were found for gender, educational level, change in the care situation, negative feelings, and provision, comprehension & practicability of COVID-19 information. Conclusion Those caregivers who perceived extensive care burden were those who suffered most during the pandemic, calling for structural support by the healthcare system now and in the future. Trial registration This article does not report the results of a health care intervention on human participants.

Care Challenges Due to COVID-19 and Mental Health Among Caregivers of U.S. Adults With a Chronic or Disabling Condition

“…In this nationally representative sample of U.S. adults aged 50–80 providing care for an adult with a chronic or disabling condition, we found pandemic-specific care challenges (e.g., confusion on public health guidelines) and supports (e.g., increase in support from family and friends) to be reported by 13%–24% of caregivers and that these challenges and supports were associated with self-reported caregiver stress, depressive symptoms, and interpersonal difficulties. These findings align with emerging research on the increased burden and stress for caregivers during the pandemic ( Archer et al, 2021 ; Budnick et al, 2021 ; Cohen et al, 2021 ; Giebel et al, 2021 ; Park, 2021 ; Savla et al, 2021 ; Sheth et al, 2021 ), yet also depart in key ways. Nearly 60% of our sample reported experiencing more caregiving stress during, as opposed to prior to, the pandemic.…”

“…Relative to noncaregivers, caregivers reported worse fatigue and mental health symptoms and long-term caregivers specifically reported more somatic symptoms (e.g., headaches, abdominal pain). Large surveys from both Germany and the United Kingdom suggested caregiver burden was particularly difficult for those caregivers who usually relied on professional help and had difficulty accessing social services, suggesting the limitation of this resource had a large impact on family caregivers ( Budnick et al, 2021 ; Giebel, 2021 ). In-depth qualitative interviews with caregivers during the pandemic expound upon challenges caregivers identified which may affect their stress including social isolation, reduced social contacts, care recipient’ health declines, changes in focus to safety and COVID-19 prevention, lack of supports and services, and new caregiving responsibilities ( Lightfoot, Moone et al, 2021 ; Lightfoot, Yun et al, 2021 ).…”

Effects of e-Health Training and Social Support Interventions for Informal Caregivers of People with Dementia—A Narrative Review

“…This SARS-CoV-2 pandemic, and the lockdown associated with it in several countries (e.g., Spain), besides having a negative impact on the psychological well-being of ICs [24][25][26], has exposed the shortcomings that exist in healthcare structures such as Alzheimer associations and day care and residential centers, revealing that these are insufficient for tackling a situation that requires providing greater protection to the most vulnerable elderly [27]. In line with the third goal of the UN's Agenda 2030 for Sustainable Development "Ensure healthy lives and promote wellbeing for all at all ages" [28], we need to develop strategies to adapt and strengthen social and healthcare for the vulnerable elderly population such as people with dementia (PwD) and their ICs.…”

“I Could Not Manage This Long-Term, Absolutely Not.” Aging in Place, Informal Care, COVID-19, and the Neighborhood in Flanders (Belgium)

“…On the one hand, it is clear, as Chan et al [ 8 ] mention, that “[d]uring large-scale public health emergencies, home care may be the only viable method of providing continuous healthcare”; on the other hand, there is a need for more in-depth knowledge about informal home care and informal home care providers and their involvement (family or neighbors). Quantitative studies from Germany and Austria reported that the psychosocial burden on many informal caregivers intensified during the pandemic [ 9 , 10 ]. Qualitative studies in Serbia and the USA likewise found an impact on the mental health of informal caregivers [ 11 , 12 ].…”