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.

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PurposeTo test whether the negative relationship between perceived stress and quality of life (Hypothesis 1) can be buffered by perceived social support in patients with dementia as well as in caregivers individually (Hypothesis 2: actor effects) and across partners (Hypothesis 3: partner effects and actor-partner effects). MethodA total of 108 couples (N = 216 individuals) comprised of one individual with early-stage dementia and one caregiving partner were assessed at baseline and one month apart. Moderation effects were investigated by applying linear mixed models and actor-partner interdependence models. ResultsAlthough the stress-quality of life association was more pronounced in caregivers (β = -.63, p<.001) compared to patients (β = -.31, p<.001), this association was equally moderated by social support in patients (β = .14, p<.05) and in the caregivers (β = .13, p<.05). From one partner to his or her counterpart, the partner buffering and actor-partner-buffering effect were not present. ConclusionThe stress-buffering effect has been replicated in individuals with dementia and caregivers but not across partners. Interventions to improve quality of life through perceived social support should not only focus on caregivers, but should incorporate both partners.

Background: While the relation between care involvement of informal caregivers and caregiver burden is well-known, the additional burden of informal caregivers during the COVID-19 pandemic has not yet been investigated.Methods: A total of 1,000 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.