Portuguese National Informal Caregivers Day - "Reducing demands in informal caregiving is vital"

A study conducted at the Center for Psychological Research and Social Intervention (CIS-Iscte) with the collaboration of the National Association of Informal Caregivers, analyzed the psychosocial factors associated with informal caregiving, highlighting its impact on the health and well-being of caregivers. The results underscore the need to implement tangible measures that reduce work demands and recognize the fundamental role of these caregivers in society.

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Ângela Romão, a researcher at CIS-Iscte, explains that “the aim of this research was to assess the psychosocial factors that characterize the working environment of informal caregivers and understand their impact on their health and well-being.” The researcher points out that caring for a dependent person poses significant challenges to the physical and psychological health of informal caregivers. “It was essential to characterize the work environment of these caregivers to understand the daily challenges they face, how they feel recognized and valued, and the type of support they receive,” she explains.

The research team, which includes researcher Isabel Correia (CIS-Iscte), applied one of the most widely used tools for assessing psychosocial risks in formal work contexts, COPSOQ II. According to Isabel Correia, “this study is innovative because it analyzes a wide range of psychosocial factors in an informal and often invisible context, such as informal care provision.” Although informal care provision is not paid, it has been increasingly recognized as a crucial form of work. In addition, it shares several characteristics with the work of healthcare professionals: these are demanding jobs, with often complex and unpredictable responsibilities, and involve limited control on the part of the caregiver. Therefore, adapting this tool to the context of informal care has made it possible to assess various psychosocial factors.

The results of the study reveal that, in the context of informal care provision, caregivers face very high demands, especially of a cognitive and emotional nature—for example, providing emotional support to the person being cared for (often a family member), coping with high levels of stress, and managing fatigue. In addition, they have few resources, such as available time, and feel a lack of recognition and support. They also feel that they are treated unfairly and with little respect by the “leadership” – understood here as the Portuguese State – which they consider weak and insufficient in supporting their needs.

Analysis of the data showed that the demands of caregiving work (i.e., a high and emotionally demanding workload, an intense pace of work, and a need for constant attention) represent a risk factor for the health and well-being of caregivers, while the predictability of tasks (i.e., being informed in a timely manner about important decisions and the best way to perform the work), the transparency of the role performed (i.e., knowing what is expected of them and what their responsibilities are), and vertical trust (i.e., a relationship of trust in the Portuguese State) emerged as important resources.

It should also be noted that the study was conducted in the context of the COVID-19 pandemic, where previous data showed greater mental health impairment among caregivers compared to non-caregivers. However, the workload experienced in providing informal care was similar to previous periods. These data seem to suggest that caregivers are under constant pressure. “In terms of workload and emotional burden, it is as if caregivers were always in a pandemic context,” says Ângela Romão.

For the researchers, these results indicate that, to protect the health and well-being of caregivers, it is urgent to develop policies and measures that reduce the demands associated with informal care. Such measures are even more relevant in the Portuguese context, since 2024 Portugal's aging index is the second highest in the European Union, with 192.4 elderly people for every 100 young people (PORDATA). According to data recently released by the Social Security Institute, more than half of informal caregivers are overloaded. “Responding to the growing care needs of an aging population will only be possible if we recognize and value the irreplaceable role of thousands of informal caregivers in Portugal,” concludes Ângela Romão.

On the occasion of Portuguese National Informal Caregivers Day, celebrated on November 5, Ângela Romão was invited to present the results of this study at the Inaugural Conference of the VII National Meeting of Informal Caregivers, organized by the National Association of Informal Caregivers, which will take place on that day at the Cine-Teatro São João - Municipal Auditorium of Entroncamento.

Text written by Pedro Simão Mendes (Science Communication Manager)