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Idalina Aguiar, member of the EWGPWD, is campaigning for a Statute for informal carers in Portugal

Wednesday 28 March 2018

I have lived with dementia for several years now and I am very grateful to my family for their care and support. In particular to my daughter Nélida who is a partial and occasional caregiver, because she needs to keep working, she has to reconcile her professional activity with the provision of care. She often has to work 12 hours a day, and does not take weekends or holidays, so as to compensate for leave taken to support me.

Caring for a relative or friend can be a very rewarding experience but can also be very challenging. As a person with dementia, I think it is important to recognise the role of the many informal carers providing care and support to people with many different conditions. This is particularly important in countries, such as Portugal where existing services and support is scarce and most of the care is provided by relatives, neighbours and/or friends. It is thus urgent that we put in place the “Statute of the Informal Caregiver”, which could recognise the importance of their dedication and work, and at the same time, protect them and guarantee certain rights. Portugal should learn from other European countries where this already exists.

March was an important milestone in the lives of many of these caregivers: A public petition for the creation of the Statute of the Informal Caregiver was discussed in Plenary in the Assembly of the Republic. I gave, once again, my small contribution, together with my daughter Nélida as we joined this fight.

Being part of the European Working Group of People with Dementia (EWGPWD) has allowed us to have a much more optimistic view about the possibility of living well with dementia, as well as fighting for the rights we are all entitled to. Together we are stronger!

Here is to the success of our campaign for this Statute in Portugal!

Idalina is supported by her daughter Nélida, to whom we are grateful for her help in translating Idalina's words to English.

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