Costs of caregiving after stroke: beyond the financial burden

Abstract

This invited commentary refers to ‘Estimating the lifetime informal care costs in stroke: a model-based analysis’, by N. Das et al., https://doi.org/10.1093/eurjcn/zvag169. The study by Das et al. provides important insights into the costs of informal care following stroke.1 Their findings show that many stroke survivors rely on informal caregivers, often unpaid family members, for support with daily and domestic activities. The amount of care required varied with the level of disability, with greater care needs among those with more severe functional limitations. This care also represents a substantial economic burden over time, although the estimated costs varied across countries.1 These findings highlight the important role of informal caregivers in supporting stroke survivors over the longer term. This is particularly relevant in an ageing population, where the need for care is expected to increase while the number of people available to provide informal care may not increase at the same rate. However, the ‘cost’ of caregiving is not only financial. Alongside its economic value, as highlighted by Das et al.,1 we would like to shed light on the consequences of caregiving for caregivers’ health and well-being and the responsibilities that may extend beyond the time spent actively providing care. High levels of caregiver burden and psychological distress are reported among informal caregivers.2 The number of hours spent providing care is significantly associated with caregiver burden, suggesting that greater caregiving demands may also be associated with greater burden. Similar experiences have been reported among informal caregivers of stroke survivors who described caregiving as a full-time job, affecting their health and well-being.3 Adjusting to the caregiver role may involve changes in work, leisure, and practical responsibilities but also altered relationships roles and managing the stroke survivor’s emotional needs. These challenges increase the risk of caregivers feeling burnout. Altogether, these demands lead to consequences for caregivers’ everyday lives. The caregiving situation may also influence how caregivers are affected. Caregivers living in the same household as the care recipient also reported greater burden, depression, and stress.2 This suggests that the impact of caregiving is shaped not only by the amount of care provided but also by the caregiver’s personal and relational circumstances. At the same time, stroke survivors receiving care from their spouse report a higher quality of life4 which suggest that close relationship between caregiver and care recipient may have different implications for the two individuals. However, caregiving should not necessarily be described only in terms of burden and loss; it can also bring a sense of accomplishment and satisfaction5 and be seen as a natural part of the relationship with the person receiving care.2 This suggests that caregiving may be experienced differently by different individuals. Further consideration is that caregiving responsibilities may extend beyond periods of active care. Care may be needed during both the day and night, and the number of hours spent on specific caregiving tasks does not necessarily describe the wider responsibility of being available when needed. Caregivers may need to provide assistance during the night, which interrupts sleep, even when the time spent actively providing care is relatively short. Around one-third of caregivers in Swedish national study reported some loss of sleep associated with providing care.5 Caregivers also describe the constant need of being attentive to sounds or outbursts from the stroke survivor, indicating a possible fall or need of help.6 Thus, even relatively short periods of active assistance may affect the caregiver’s everyday life in total. Economic estimates are important for understanding the wider societal impact of informal caregiving after stroke. Alongside economic estimates, caregiving affects caregivers’ health and well-being, while responsibilities such as being available and attentive may also extend beyond periods of active care. Healthcare professionals and policy makers should therefore be aware of the different circumstances and responsibilities that may influence caregivers’ life situations when making decisions about post-discharge stroke care. Magda Eriksson-Liebon (Conceptualization [lead], Project administration [lead], Visualization [lead], Writing—original draft [equal], Writing—review & editing [equal]), Anna Hellman (Conceptualization [equal], Visualization [equal], Writing—original draft [equal], Writing—review & editing [equal]), and Tiny Jaarsma (Conceptualization [equal], Supervision [lead], Visualization [equal], Writing—original draft [supporting], Writing—review & editing [equal]) This commentary was supported by institutional funding from Linköping University. No external funding was received. This commentary does not contain new data.

The authors' abstract, as published at the source. European Journal of Cardiovascular Nursing, 2026 · DOI ↗