With the increase in average life expectancy, there are more and more topics that are talked about and debated: the chronically ill and the ageing population, among others. But there is a topic, often overlooked or neglected due to the scarcity of social responses, which is so important and vital today for so many of the chronically ill, children with disabling diseases and the elderly. We talk about informal caregivers.
So what is an informal caregiver? It was only in 2019 that an informal Caregiver statute was approved distinguishing between primary and secondary informal caregivers. Thus, “the primary informal caregiver is considered to be the spouse or de facto partner, relative or similar up to the 4th degree of the straight or collateral line of the person being cared for, who permanently accompanies and cares for the person, living with him in his house and who does not receive any payment for professional activity or for the care he provides to the person being cared for”. And a secondary informal caregiver is the spouse or de facto partner, a relative or similar up to the 4th degree of the straight or collateral line of the person being cared for, who accompanies and cares for the person on a regular, but not permanent basis, and who may or may not receive payment for professional activity or the care he provides to the person being cared for".
In this statute, the rights and duties of informal caregivers are explained. They are also published in an ordinance so that the request for acknowledgement is defined. But for now, they are only in the process of creating pilot projects with selected municipalities. The amounts of subsidies that may be given have not yet been quantified.
In Portugal, according to Eurocarers, there are around 800 thousand informal caregivers who are still not entitled to support measures, such as subsidies or rest periods.
But who are these informal caregivers and what motivates them? According to the study “Who cares?” by Conface, more than 80% of caregivers are women of all ages, and, according to authors in an article on family support for the elderly, their main motivation (57%) is related to emotional connections, such as love and affection. For this reason, they dedicate their lives helping the persons being cared for, with those who justify doing it out of a sense of duty (15%), obligation (13%) or because there is no other alternative (3%) constituting a smaller percentage.
Anxiety, exhaustion, isolation and risk of poverty due to labour constraints are some of the weaknesses that informal caregivers currently experience. They do not normally have an adequate rest period, due to overload and lack of social and logistical support. As mentioned in a document on intervention measures for informal caregivers from 2017, it was essential to create a network that allows caregivers to rest for a suitable time, acknowledge these caregivers and create training, information and counselling services.
Hopefully, with the publication of this Informal Caregiver statute, measures will be taken to ensure and adequately train these people: The role of informal caregivers is fundamental in terms of promoting the health and well-being of the person they care for, especially in terms of self-care and operational activities of daily living. They provide emotional support and well-being while also ensuring the promotion of autonomy and the maintenance of quality of life and human dignity in these people who are in such a fragile situation, such as the elderly and adults or children who are dependent.
Check here some examples of heroic Portuguese.
Study “Who cares?” 2017 available at http://www.coface-eu.org/wp-content/uploads/2017/11/COFACE-Families-Europe_Study-Family-Carers.pdf retrieved on 26 February 2020
Eurocarers available at https://eurocarers.org/ retrieved on 21 February 2020
Lamura, Giovanni & Kofal, Christopher & Döhner, Hanneli & Quattrini, Sabrina & altri,. (2008). Supporting Family Carers of Older People in Europe – The Trans-European Survey Report.
Law no. 100/2019, Online Official Government’s Gazette, available at https://dre.pt/home/-/dre/124500714/details/maximized retrieved on 21 February 2020
MEDIDAS DE INTERVENÇÃO JUNTO DOS CUIDADORES INFORMAIS available at http://cuidadores.pt/sites/default/files/documentos/Doc_CI.PDF retrieved on 26 February 2020