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Idalina Aguiar shares news about Portuguese patient associations united in a “Movimento Cuidar dos Cuidadores Informais”

Monday 26 October 2020

Recently recognised by a legal statute that still doesn't acknowledge the struggle, challenges or difficulties they have to deal with, informal carers remain an invisible part of the caring process in Portugal. That’s why, with the support of Merck Portugal, the “Movimento Cuidar dos Cuidadores Informais” was recently launched. An idea that we consider to be a success already, since in record time it has been able to bring together 24 different patient associations, all with the same goal: to care for those who take care of others. The main objective is to understand what remains to be done for informal carers in Portugal, improving their quality of life and, consequently, that of the patients.

The objectives of this new Movement include the implementation of a survey of the Portuguese population, to assess their perceptions of informal carers and also a survey of informal carers to identify their struggles and needs that have continuously been neglected. The implementation of a national communication and awareness plan and the launching of a communication campaign intend to give voice to these people. At the same time, the Movement wants to develop a public project that involves all stakeholders, including public services, and concentrate efforts in information campaigns, reviewing of the current legislation and development of a psychological support solution for the carers alongside training sessions and other types of online support.

This work is only just beginning, but the teamwork which has been developed until now reveals the level of commitment to the thousands of people who, every day, give up a little bit of themselves to take care of the ones they love. It was a pleasure to see that all people with dementia and their carers, will be included in this Movement. Idalina Aguiar is a Member of the European Working Group of People with Dementia and is supported by her daughter Nélida, to whom we are grateful for her help in translating Idalina's words to English.