This data results from a recent study carried out by the Movimento Cuidar dos Cuidadores Informais, which represents 24 entities, and surveyed 1,133 informal caregivers. It showed that almost 60 percent of respondents do not even know about the Statute of the Informal Caregiver (ECI) that has been in force since 1 April 2020, law nº 100/2019.

Why are caregivers unaware?

“Because in practice caregivers still don’t see the advantage in applying for this statute”, said Ana Pinheiro, a psychologist and member of the team of Cuidar de Quem Cuida, a social project, promoted by CASTIIS that has been following caregivers since 2009.

Ana Pinheiro continues: “Financial support is only working in some pilot councils”, in 30 municipalities covered by the pilot project for its implementation. This means that, only residents in those 30 municipalities of the country can ask for financial support, even with the statute.

Ana Pinheiro pointed out two other reasons that justify these numbers: “the percentage of caregivers who do not have access to the internet or who have low digital literacy can make it difficult for them to access information; and the general idea that the application process is very bureaucratic is also an issue”.

Ana Pinheiro, who is part of a project that works in the field, knows exactly all the needs that these informal caregivers have. “Many of them stop working to be able to take care of a person full time and in return there is no financial support that allows them to have stability and a quality of life”, she told The Portugal News.

However, the lack of economic support is not even the main complaint of these people. Psychological fatigue is much greater and the difficulty of being able to take a day off or holidays is another problem that remains without answers.
“There are very few options for respite for the unpaid caregivers. If the caregiver is already in a difficult economic situation, it is very difficult for them to pay for a service so that, for example, they can rest for a week in a year”, said Ana Pinheiro.

More than half of the caregivers (56.4 percent) say they do not have time or space for their personal routines and other social activities and more than 90 percent affirm the desire to return to have time for the habits they had before being a caregiver.

However, there are some municipalities that have good practices. “There is a council in the North, in which if the informal caregiver wants to take a week’s vacation, the family can count on the help of a formal caregiver”, she highlighted.
During the pandemic the number of informal caregivers has been increasing, another survey carried out in November last year by the Movimento Cuidar dos Cuidadores Informais, came to the conclusion that there are 1.4 million informal caregivers in Portugal.

The member of Cuidar de Quem Cuida recognises that “as long as it (the ECI) is not implemented nationally, it will not have a great impact” and warns of the importance of “knowing the reality of our country. We have to understand who they are, where they are and what are the main needs they have”, she concluded.