After some decades trying to get legislation in place promoting the autonomy and the rights of people with incapacity (due to dementia, or for any other reason) the “Regime do Maior Acompanhado” came into force on 10 February 2019. This means a complete change of paradigm in line with the Convention on the Rights of Persons with Disabilities (CRPD). Now, the Portuguese legal framework “ensures that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person's circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person's rights and interests”, as stated in Article 12, nº4 of the Convention.
Capacity is no longer seen as an ‘all or nothing’ phenomenon, but is now assessed according to the person´s concrete needs and with the different categories of acts people may wish to perform (making a will, driving, choosing where to live, taking financial or property decisions). Interdiction and incapacitation have been replaced by “medidas de acompanhamento” (accompanying measures). These can be of very different types and are decided in order to promote autonomy and rehabilitation.
People who may need help to take financial or property decisions, in principle, preserve their autonomy to take personal decisions such as getting married, choosing where to live, appointing a healthcare proxy, having children and taking care of them, making a will or voting. People may choose, in advance, the person or persons who will help them to make decisions or act on their behalf, if and when needed and a court ruling must take these advance decisions into account.
These are very important steps towards the promotion of people with incapacity legal rights. It is also a huge challenge to judges, public attorneys, lawyers, doctors, people with incapacity and their families but also to nursing homes and other facilities. All of them need to be well informed and prepared to explore all the opportunities arising from this new legal framework. It is also very important to make wider society aware of the main advantages of it: the recognition of decisions of any kind taken in advance and the principle of limiting autonomy as little as possible.
Unfortunately, however, stresses Alzheimer Portugal, the new legal framework has omitted a very important issue - there are still no professional guardians, which means there is a very large number of people with incapacity and no guardian. They may be cared for by their families, who may act in good faith, but with no legitimacy to act on their behalf. And what’s worse, a growing number of people with mental incapacity are living alone in very poor conditions (lack of food, hygiene, home), because there is no one appointed to protect them and to act on their behalf. Some of them have money and property but are not able to manage them.
Overall, Alzheimer Portugal is very happy with this change of paradigm and has been developing several training programmes on this issue, for professional and family carers, to make them aware of the importance of informing people with dementia of their right to decide in advance and to have a voice in the judicial process that will ultimately decide the most adequate measures in each situation for each person, as the need arises.
