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Portuguese Parliament unanimously approves Act on rights of informal carers but implementation is delayed due to COVID-19

Wednesday 01 April 2020

After strong and persistent lobbying from several carers’ organisations, including Alzheimer Portugal, and with the support of the President of the Republic, members of the Portuguese Parliament have unanimously approved the Act of the Parliament nº 100/2019 of 06.09. This Act regulates the rights and duties of informal carers and of the people who need care, establishing the respective support measures.

At the beginning of 2020, Order nº 2/2020 of 10.02 from the Minister of Labour and Social Security was issued to (partially) regulate this newly-approved Act of Parliament. More recently, Order nº 64/2020 of 10.03 from the Ministers of Finances, Labour and Social Security, and Health defined the terms and conditions needed to implement the pilot projects mentioned in the Act, and named the 30 municipalities where they would take place, as of 1 April 2020.

The implementation of these pilot projects implies the adoption of several measures such as the appointment of a healthcare professional who will be in charge of organising the resources needed by the carer, namely information about rights and benefits, services and facilities available at health and social level; and the definition of an individual plan tailored according to the carer´s specific needs (prepared by that health professional in collaboration with a social care professional). This individual plan will identify the care that will be delivered by the informal carer, his/her burden assessment, the relief period duration, identification of self-help groups, psychosocial support, training and capacitation, and availability of health and social measures needed to promote the autonomy, involvement and quality of life of the care recipient.

Carers’ allowances are also accounted for (for the main carer, i.e. the one who delivers care permanently). The amount of the allowance is calculated according to the carers income. Unfortunately, due to the current COVID-19 pandemic, all human and financial resources are required elsewhere and pilot projects have, therefore, been delayed.

Alzheimer Portugal highlights the unfairness of this situation: These newly-promised measures, which - despite being far from enough and being applicable only to family carers – are now to be delayed due to COVID-19, are needed all-the-more at this moment. Carers are struggling (even more than normal) to support people with dementia, during a period that is detrimental to everybody, but particularly to those who are living with chronic health conditions and who may, therefore, require more support. Carers are permanently giving an essential contribution to society with very little recognition or support from the government. Fortunately, comments Alzheimer Portugal, the same is not true in the Regions of Madeira da Azores, where specific legislation is already in force.