Bruce Willis and aphasia: does losing speech mean losing the right to decide?

By Ramon Martins Andrade, attorney (OAB/RJ 188.374)

English translation of an article first published in Portuguese: read the original.

On 30 March 2022, a family statement posted on Instagram by Rumer Willis announced that Bruce Willis was stepping away from acting. The reason, in the words of the text as reproduced by Al Jazeera, was a recent diagnosis of aphasia, “which is impacting his cognitive abilities”. On 16 February 2023, in a second statement published by the Association for Frontotemporal Degeneration (AFTD), the family said that his condition had progressed and that there was now a more specific diagnosis: frontotemporal dementia. And it added that “challenges with communication are just one symptom of the disease”. In the same text, the family wrote that, under the age of 60, frontotemporal dementia is the most common form of dementia, and that there is currently no treatment for the disease.

That is all the family has made public about the diagnosis relevant to the article, and nothing here is asserted about the actor’s current condition, about what he can or cannot decide, or about any measures the family may or may not have taken, which are the family’s own business and, moreover, a matter for another legal system. What the two statements show, in the order in which they came, is the sequence that many Brazilian families go through without knowing that it has a name: first the words go, then the diagnosis arrives, and only then does the question of who signs arise. Losing speech is not the same as losing the will, and Brazilian law, read carefully, asks about the will.

Aphasia is a symptom; frontotemporal dementia is a disease

Aphasia describes what has been lost: the ability to speak, to find the word, to understand, to read or to write. It may result from a stroke, from trauma or from a degenerative disease. Frontotemporal dementia describes why it was lost, and brings together conditions that begin with language and conditions that begin with behaviour. When language is the first and main symptom of a degenerative disease, medicine speaks of primary progressive aphasia.

In 2011, Gorno-Tempini and an international group of researchers published in Neurology the classification of this aphasia into three variants, non-fluent or agrammatic, semantic and logopenic, defined by features of speech and language. The classification can be supported by imaging, when the expected pattern of atrophy appears, or by pathology, when histopathological or genetic data are available. It is an expert consensus, built in meetings, and the authors themselves announced prospective data to link each syndrome to biomarkers.

In the same year, Rascovsky and an international consortium published in Brain the revised criteria for the behavioural variant. A “possible” diagnosis requires three of six features: disinhibition, apathy or inertia, loss of sympathy or empathy, perseverative or compulsive behaviours, hyperorality and a neuropsychological profile of executive dysfunction. In 137 cases with pathological confirmation, 118 (86%) met the criteria for a “possible” diagnosis and 104 (76%) those for “probable”, against 72 (53%) under the earlier criteria. Cases with predominant progressive aphasia were excluded from the validation: the two ways into the disease have their own criteria.

That difference has measured consequences for a person’s finances. In a study published in 2024 in the Journal of Alzheimer’s Disease, Ngo and colleagues asked caregivers to report financial errors over the previous year in people with Alzheimer’s disease, with the behavioural variant and with primary progressive aphasia. The behavioural variant was associated, more than Alzheimer’s, with errors due to overconfidence or gullibility and with carelessness about money; between Alzheimer’s and progressive aphasia, there was no difference. Earlier, in 2019, Gill and colleagues (Journal of Neurology) tested 45 patients with frontotemporal dementia or Alzheimer’s disease and 22 controls on two batteries of financial capacity: the three patient groups performed worse than the controls, and companions overestimated the performance of the patients with Alzheimer’s. The authors note that patients with diseases of the frontal and temporal lobes may perform well on standard cognitive tests, and conclude that the assessment of financial capacity must be based on performance, not on impression.

For the law, the consequence is symmetrical. Aphasia affects the channel through which the will comes out, and so it looks like incapacity without necessarily being so. The behavioural variant may affect the judgement that forms the will, sometimes with speech preserved, and so it may look like capacity without being so. A family that treats the two in the same way goes wrong in both directions.

How to measure the capacity of someone who cannot find the word

The speech-language pathology literature has been addressing the problem for more than a decade. In 2020, Kagan and colleagues used cases, in Seminars in Speech and Language, to show the danger of presuming that people with aphasia are incompetent and the potentially life-changing consequences of not attempting to adapt communication; competence, they say, may be masked by aphasia, and communication support may reveal intact capacity for specific decisions. In 2014, Aldous and colleagues (International Journal of Speech-Language Pathology) surveyed speech-language pathologists about their involvement in these assessments: 51 of the 59 respondents said they took part, mainly in hospitals and rehabilitation centres, and reported dissatisfaction with the capacity assessment protocols at their workplaces.

In a progressive disease, the conversation about the future also needs a method. A study published in 2026 in the International Journal of Language & Communication Disorders analysed recordings of four dyads, each made up of a person with primary progressive aphasia and their caregiver, in a programme led by a speech-language pathologist and aimed at improving conversations; questions and hypothetical scenarios made it possible to address future changes without the dyad having to talk about themselves. It is a small qualitative study with no outcome measure; it points to a method, it does not prove efficacy.

The Civil Code asks whether the will is expressed, not whether the person speaks

Since Lei 13.146/2015 (the Brazilian Inclusion of Persons with Disabilities Act), only those under 16 are absolutely incapable. Anyone who, “for a transitory or permanent cause”, cannot express their will became relatively incapable under art. 4, III, of the Civil Code (Código Civil), and is subject to curatorship (curatela) (art. 1.767, I). The Act itself opens the subject with the opposite rule: “Disability does not affect the full civil capacity of the person” (art. 6), and the person with a disability “is assured the right to exercise their legal capacity on an equal basis with other people” (art. 84). Curatorship is an “extraordinary protective measure, proportionate to the needs and circumstances of each case”, which “shall last for the shortest time possible” (art. 84, § 3), and “shall affect only acts relating to rights of a property and business nature” (art. 85).

The verb the law uses is express, not speak. The Code of Civil Procedure (CPC) confirms that reading: at the curatorship interview, the judge asks the person about their life, business, property, “wishes, preferences and family and emotional ties” (art. 751), and “the use of technological resources capable of enabling or assisting the person subject to the proceedings to express their wishes and preferences and to answer the questions put to them is guaranteed” (art. 751, § 3). The interview “may be attended by a specialist” (§ 2), and nothing prevents that specialist from being the speech-language pathologist. An expert examination that concludes there is incapacity only because the person could not sustain an oral conversation will have measured the aphasia, not the will; that is why the report “shall specify, where applicable, the acts for which curatorship will be necessary” (art. 753, § 2). How these two stages work is explained in the article on interdiction proceedings from the inside (in Portuguese), and what the medical report needs to describe, in the text on the capacity report that the geriatrician signs (in Portuguese).

Supported decision-making has a deadline that the law does not write

Supported decision-making (tomada de decisão apoiada) (in Portuguese), under art. 1.783-A of the Civil Code, allows a person with a disability to choose “at least 2 (two) suitable persons”, with whom they have ties and whom they trust, to support them in decisions on acts of civil life, without losing capacity. The agreement submitted to the judge sets out the limits of the support, the supporters’ undertakings and “the term of validity of the agreement” (§ 1). A decision taken within those limits is valid towards third parties “without restriction” (§ 4), and anyone negotiating with the supported person may ask the supporters to countersign the contract (§ 5). The person may terminate the agreement “at any time” (§ 9).

In a progressive disease, two paragraphs decide everything. The application “shall be filed by the person to be supported” (§ 2), and the judge, “assisted by a multidisciplinary team”, “shall personally hear the applicant and the persons who will provide support” (§ 3). The instrument therefore depends on someone who is still able to apply and to be heard. In frontotemporal dementia, that means the beginning, between the diagnosis and the loss of understanding of what is at stake. The Code sets no such deadline; the disease sets it. Paragraph 3 does not say how the applicant must express themselves at the hearing, and the logic of art. 751, § 3, of the CPC, designed for the more serious measure, applies with even greater reason to the lighter one: someone who understands and answers in writing, by gesture, with a communication board or an app may ask for support, even if unable to say so aloud.

When support is not enough: curatorship to the extent of the report

When the person no longer understands what they are deciding, the path is curatorship. It may be requested by the spouse or partner, relatives, the institution where the person is sheltered and, in certain cases, the Public Prosecutor’s Office (CPC, art. 747). The petition must specify the facts and “the moment at which the incapacity became apparent” (art. 749), with a medical report (art. 750); in case of urgency, the judge may appoint a provisional curator “for the performance of specific acts” (art. 749, sole paragraph), a route that the text on asset protection in dementia (in Portuguese) examines. In the judgment, the judge sets the limits of the curatorship and takes into account the person’s “potential, abilities, wishes and preferences” (art. 755, I and II); the judgment must set out “the reasons and grounds for its definition” (Inclusion Act, art. 85, § 2).

A spouse or partner who is not separated is, “by right”, the curator of the other (Civil Code, art. 1.775); the judge may establish shared curatorship (art. 1.775-A), the curator renders accounts to the judge every year (Inclusion Act, art. 84, § 4) and “shall seek treatment and support appropriate to the achievement of autonomy” (CPC, art. 758). Curatorship may be partially lifted when capacity for some acts is shown (art. 756, § 4). In aphasia without impairment of judgement, the design that the law allows is narrow: curatorship, if any, only for the acts that the report indicates, with the communication channel preserved and documented. In the behavioural variant, the reverse problem calls for the same care, because the report needs to say which transactions the person can no longer weigh up, and not merely that they have a diagnosis.

Health stays outside curatorship; the patients’ law fills the gap

Curatorship does not extend to “the right to one’s own body, to sexuality, to marriage, to privacy, to education, to health, to work and to vote” (Inclusion Act, art. 85, § 1). Decisions on treatment, which in a degenerative disease tend to be the most difficult, lie outside the reach of the curator as such. Lei 15.378/2026 (the Patients’ Rights Act) created the instrument for that gap. It defines advance directives as a written statement on the care the patient accepts or refuses, “which must be respected when they are unable to express their will freely and autonomously” (art. 2, II), and the patient’s representative as the person designated “in their advance directives or in any other written record, to decide on their behalf about the care relating to their health” (art. 2, III). The patient may appoint that representative “at any point in their health care, by means of an entry in their medical record” (art. 6), and the directives must be respected “by the family and by health professionals” (art. 20).

For someone who receives a diagnosis of progressive aphasia, the health-care representative is the simplest and most urgent document, because an entry in the medical record is enough while the will can still be expressed. How to make one and what the directives cannot authorize are covered in the text on living wills and advance directives (in Portuguese).

Powers of attorney and contracts: what lapses and what can be annulled

An ordinary power of attorney does not survive the illness. The Civil Code terminates the mandate “by the death or interdiction of either party” and “by a change of status that renders the principal unable to confer the powers” (art. 682, II and III). The Code has no equivalent of the durable power of attorney known in other countries, and the article on interdiction proceedings deals with the alternatives that practice has developed. On the other side, a transaction entered into by a relatively incapable person is voidable (art. 171, I), and the four-year period for seeking annulment, in the case of acts of incapable persons, runs only “from the day on which the incapacity ceases” (art. 178, III). The evidence, in these cases, is the person’s condition at the time of the act, and that is why a certificate of mental capacity (in Portuguese) drawn up in a hurry, in two lines, rarely holds up.

Comparative law: three answers for those who lose their words

The Convention on the Rights of Persons with Disabilities, promulgated in Brazil by Decreto 6.949/2009, requires States to provide “access by persons with disabilities to the support they may require in exercising their legal capacity” (art. 12, para. 3), with safeguards that “respect the rights, will and preferences of the person” and “apply for the shortest time possible” (para. 4). Three legal systems show different paths to fulfilling the same idea.

1. England and Wales: communication within the test

The Mental Capacity Act 2005, in force since 1 October 2007, presumes capacity (section 1(2)) and provides that a person is not to be treated as unable to make a decision “unless all practicable steps to help him to do so have been taken without success” (1(3)), nor merely because he makes an unwise decision (1(4)). A lack of capacity cannot be established merely by reference to a condition of the person which might lead others to make “unjustified assumptions” (2(3)). The test in section 3 is decision-specific, and one of its four limbs is inability to communicate the decision “whether by talking, using sign language or any other means” (3(1)(d)); a person is not unable to understand if they can understand an explanation given “using simple language, visual aids or any other means” (3(2)). Whoever decides on the person’s behalf must consider their past and present wishes, “in particular, any relevant written statement” made when they had capacity (4(6)(a)). And section 9 created the lasting power of attorney, a registered power of attorney granted by someone with capacity, which applies precisely “in circumstances where P no longer has capacity”.

2. Germany: a curator who supports before representing

The reform of German guardianship and curatorship law came into force on 1 January 2023 (EGBGB, art. 229, § 54). Under § 1814 of the German Civil Code (BGB), Betreuung (court-ordered legal care for adults) is instituted only if it is necessary and never against the free will of the adult; it is not necessary if an attorney chosen by the person can handle their affairs “equally” (gleichermaßen) well. The areas of responsibility are set one by one by the court, and only to the extent necessary (§ 1815(1)); the same transitional law allowed until 1 January 2024 to bring curatorships covering “all affairs” (aller Angelegenheiten) into line with that model. The person’s wish as to who will be their curator (Betreuer) must be followed, unless the person proposed is unsuitable, including when it was expressed before the proceedings (§ 1816(2)). And § 1821 reverses the logic of representation: the curator supports the person in handling their own affairs and uses the power of representation only “to the extent necessary” (soweit dies erforderlich ist); the curator must ascertain the person’s wishes and act on them, unless there is considerable danger that the person, because of the illness, cannot perceive.

3. United States (California): the least restrictive alternative as a condition

In the United States, each state has its own law. In California, section 1800.3 of the Probate Code, as worded since 1 January 2023, prohibits the court from granting a conservatorship, of the person or of the estate, without an express finding that it is “the least restrictive alternative” needed for the protection of the person. To reach that conclusion, the court must consider the person’s abilities and capacities “with current and possible supports”, including supported decisionmaking agreements, powers of attorney, the designation of a health care surrogate and advance health care directives.

The three systems reach the same point by different paths: the English one puts communication within the capacity test and gives the person a power of attorney that survives the illness; the German one kept the figure of the curator, but requires the curator to support before substituting; the Californian one makes the least restrictive alternative a condition of the judgment. Brazil has the pieces, supported decision-making, restricted curatorship and the health-care representative, but not the durable power of attorney, and the order in which those pieces are used depends on the family arriving early.

Before deciding

In my view, the first question for a family facing aphasia or frontotemporal dementia is not “how to have the person declared incapable”, but “what did the disease take first, the words or the judgement”. If it was the words, what the person is owed is an interpreter, not a curator: a written speech-language assessment of how they understand and respond, supported decision-making while they can still ask for it, a health-care representative recorded in the medical record and, if proceedings one day come, an interview with the same communication resources they use at home. If it was judgement, an assessment of financial capacity based on performance, not on impression, should come before the losses appear, and any curatorship that follows should be restricted to the acts that the report indicates. In both cases, the useful time is the beginning, and those who wait for the disease to advance lose precisely the instrument that preserved the patient’s own voice. If the family is in that interval, between the diagnosis and the question of who signs, get in touch with the firm: the analysis starts from the medical and speech-language reports and does not replace clinical assessment.

About the author

Ramon Martins Andrade (OAB/RJ 188.374) is a lawyer who graduated from UFRJ in 2011, with master’s degrees from Université Sorbonne Nouvelle and from the Naval War College (EGN, Brazilian Navy). He is currently a researcher in Human Rights and Health at ENSP/Fiocruz.

This content is for information and education only. It does not constitute legal advice, advertising of results or any guarantee of outcome, under Rule 205/2021 of the Brazilian Bar Association (OAB).