Screenshot from a movie Good Bye, Lenin! (2003)
Henrique Silva
Social Innovation Consultant
Santa Casa da Misericórdia da Amadora
Like other European countries, Portugal is experiencing quite a challenging time dealing with the consequences of Covid-19 syndemia [1]. In this context, the National Association of Informal Caregivers (ANCI) [2] conducted a national survey that made it possible to estimate that the number of informal caregivers in Portugal is around 1.4 million people. If we take into account that the Portuguese population is only 10.2 million, these figures are quite disturbing, especially since it was estimated that until last year there were 800,000 informal caregivers in Portugal. Although we know that this increase from 8% to 14% is related at the same time to the levels of pressure that health and social support services are experiencing, as well as to the economic pressure felt by families in this crisis context, we cannot help but wonder what the value of the caregivers’ work is, given the value understood here in the multiple meanings of the word.
By compensating for the flaws of the health and social support responses, caregivers end up being a kind of buffer that allows maintaining social cohesion. Moreover, from a certain point of view, the situation of informal caregivers today is comparable to the situation experienced by housewives who in the last century struggled to see the value of their work recognized. A value, which clearly transcends the domestic function to impact the whole society, as if the act of caring for the other was not the one that best distinguishes us as humans, those who accompany the other until the end of life, and burying them under the humus from where life arouses once again.
The overall aim of the InAdvance project is to improve or maintain the quality of life, increase social support, caring and coping skills of informal caregivers of patients receiving palliative care, and also decrease the caregiver burden.