The data speaks for itself and sheds light on the difficulties experienced every day by those who dedicate their lives to caring for someone. More than 80% of informal carers admit to being emotionally exhausted and almost 78% have, at some point, felt the need for psychological support. However, only 42% sought this type of help. This discrepancy is particularly worrying when we consider that almost 80% believe that their emotional health status affects their performance as informal carers.
The results were obtained through the study “Mental health and well-being in informal caregivers in Portugal”, an initiative of Merck Portugal, with the support of the Movimento Cuidar dos Empregos Informais. Recall that, as early as 2021, in another survey promoted by the same partnership, we learned that 52% of informal caregivers felt that they did not have sufficient psychological support, from the state and not only. It was precisely this indicator that prompted the deepening of the research that is now being carried out, as explained by Pedro Moura, general manager of Merck Portugal, at the opening of the conference “The present and the future of the informal carer”, held on January 31 in the amphitheater PÚBLICO and broadcast live on the newspaper’s website and social networks.
According to the official, the care of caregivers is a concern that has taken a “very central position” at Merck, and in this context the company supported, in 2020, the creation of the Movement for the Care of Informal Caregivers. which today already has over 30 patient associations.
Sad, nervous and worried
Among the figures presented at the session by Florbella Borges, CEO from Multidados, the market research company that carried out the survey, there are also those that reinforce how most informal caregivers see themselves in a state of great fragility and distress. Almost 80% say they don’t feel like laughing like they used to and 63.7% assume they rarely feel comfortable and relaxed. In addition, 48.3% state that their head is full of worries and close to 46% often feel tension and nervousness.
For Ana Carina Valente, psychologist and head of the Research, “in addition to giving a voice to caregivers, this study allows us to say that these people really need help.” He understands that “psychological suffering” is the expression that best defines the way informal carers live in Portugal, remembering that many of these people “play this role 24 hours a day”. “We have to listen to this cry, these people are not well and recognize that they need help,” adds the professor at ISPA – University Institute of Psychological, Social and Life Sciences, noting however that “informal caregivers have low levels of mental health , but that doesn’t mean they’re sick.” What is at stake is, yes, exhaustion, anxiety, fatigue, and the person who stops thinking about himself, sums it up.
Unfortunately, the image fits Vanessa Leitão perfectly, primary caregiver to her 3-year-old son, who has a rare disease that requires multiple care and constant attention. During the conference, she shared the anguish she feels about the lack of follow-up she sees in our country: “We’re neglecting our role as caregivers if we’re not well, and that’s how I’ve felt for three years.” A pharmacy technician assistant, he said he had to leave the profession to be a full-time carer and only recently received a first psychiatry to better cope with the condition, through the Portuguese Society of Multiple Sclerosis (SPEM). “We ended up feeling canceled. It’s very unfair, because happiness ends up eluding us,” he bursts out.
Joining countless people in similar situations is Liliana Gonçalves, president of the board of the National Association of Informal Caregivers (ANCI), which is why she says she was not surprised by the results. “In society in general, we don’t invest in mental health and we don’t look to care for those who care about that aspect,” she laments. Although the Informal Carer Statute (ECI) was created in 2019, the official stresses that “the statute does not solve the reality of informal carers”. “Caregiving has a cost and it’s important to assume that, it has a physical, financial, emotional cost and our lives are put on hold,” she says, stressing that “we don’t have psychological support to reach the caregivers and we don’t have any other type of answers, like home support or carer respite responses’.
Palmira Martins, a social worker at SPEM, has been helping Vanessa Leitão “untie knots” for almost a year, and puts the emphasis where she thinks it should be. “The state should provide the support I provide. She [Vanessa Leitão] she has the right for the state to come in and help her meet those needs,” she says, adding that Vanessa Leitão, like so many other caregivers, has “a very fragile financial situation.” Indeed, the amount she receives for being recognized as an informal carer is far from covering the daily expenses she has with her child, in addition to not being able to work. “It doesn’t even reach the minimum wage,” confirms Vanessa Leitão, arguing that “the subsidy should also be maintained for the non-main carer.”
A race for everyone
Aware of the difficulties that exist, Susana Viana, director of the Social Intervention Unit of the Social Development Department of the Social Security Institute, reminds, however, that supporting carers “is not just a struggle for institutions, it is also a struggle for the State”, and that the way is made to go further. According to the official, the ECI provides, among other things, that “for every informal carer who sees his status recognized there are two reference professionals, one from health and the other from social security”, and this is because it is considered “very important to guarantee the support of caregivers and ensure their biopsychosocial balance”. However, he recalls that the ECI is not aimed at all informal carers (1.4 million in Portugal, according to data from the Movimento Cuidar dos Gestores Informais), but only “who cares for a family member who is in a state of great dependence”. , which will correspond to a maximum of 14,000 caregivers in our country.
In fact, according to Liliana Gonçalves, at the moment only 11,500 caregivers have been recognized with the status, but many were left out, as the universe of requests rose to 23,000. “We cannot ignore the part of informal caregivers who are outside of this statute,” he stresses, warning of the need to have “a comprehensive vision for these people.”
Also present at the session, Susana Eusébio, a representative of the Central Administration of the Health System, where she is part of a team monitoring the implementation of the PPE, says that efforts are being made for health professionals to now extend their gaze to the caregiver, which “ even now it was not done systematically and aimed at very specific goals. Thus, in addition to identifying the needs of the informal caregiver, specifically in terms of providing good care, there is now a call for attention to their own health, physical and psychological. “Their mental health is affected by the fact that there are health problems that are not properly monitored and which then reflect on the informal caregiver’s ability to provide care,” he recalls, giving the example of diabetes or hypertension, among others.pathologies.
all for the sick
Promoted by Merck Portugal, the conference was organized as part of the “As one for patients” week, which took place in several countries and strengthened the company’s position. “All for the sick, next to the sick, and those who care for them, as a team” is the motto, as the communicator Fernanda Freitas, who was responsible for the coordinating discussion, remembers.