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Caregivers’ limited rights to legally act on behalf of Alzheimer patients: Learning from the Brazilian experience

The Brazilian law 13.146/2015 implemented the UNO’s Convention on the Rights of Persons with Disabilities in 2016. It modified the private law rules concerning a person’s ability to legally act, and it does not acknowledge the concept of “total disability” anymore, but only “partial disability” or “restricted legal capacity” (with the exception of minors who continue to be legally incompetent). Other persons with limited intellectual or physical capacities are now legally “partially disabled”. The reason for this change of paradigm was the legislators’ aim to follow the Convention and to strengthen the principle of human dignity, one major foundation of the constitutional system. The law was certainly meant well, but it does, however, not allow any difference among the many kinds of disabilities. Whether being physical, intellectual, mental (as Alzheimer) or else, they are indiscriminately considered as one unique disability. The legislators created a problem for patients with Alzheimer: they cannot be considered totally disabled now, even if in fact they are. The (family) caregivers are now only in charge of the economic sphere of the disabled person. Thus, every aspect of personal life is legally left for the disabled (and often helpless) person to decide, whether it factually can, or not. Caring family members could not change the circumstances. However; the Supreme Court of the State of São Paulo has recently applied a wide interpretation of the law, extending caregivers’ rights to decide about the personal sphere of the patients.