Competence in dementia: The unfinished task before us

Dear Editor:

I am very pleased that our review of competency in dementia¹ has sparked such interest and comments as expressed in the preceding letter.² In recognising the transcendence of this matter and calling for cooperation not only between neurologists and other doctors, but also between other disciplines, the author highlights precisely the key aspects we wished to transmit. Those aspects are the role of the neurologist working side by side with other specialists, and the need for more detailed study of how to recognise competency in specific situations.

Dementia imposes functional limits on patients, and these limits are precisely what defines the entity. Dementia limits the patient's understanding of decisions, including diagnostic and therapeutic decisions, and their consequences. With this in mind, we will have to establish levels of competence and define protocols and consensus guidelines. Such guidelines must contemplate such common and delicate clinical situations as the use of physical or pharmacological restraints, and the patient's ability to understand the benefits and risks of participation in clinical trials. The author was very correct in mentioning these specific examples.²

Incapacitation is a legal resource intended as a means of protecting the patient, even though the consequences that arise from revoking a person's autonomy may lead us to reject this measure. Establishing incapacity resides with the legal authorities, and not with medical specialties. However, expert testimony, based on the examiner's evaluation, plays a crucial part in the process. Interdisciplinary cooperation must be promoted precisely because the process must involve both doctors and legal figures representing diverse fields. It would be very advantageous to set up and prioritise specific focus groups so as to advance beyond the constraints of certain valuable documents, including the Sitges consensus statement, which the author of the letter highlights.² In doing so, we must also be very aware of the fact that dementia is an evolving process, and that patients’ specific needs depend on phases and situations extending across very wide time frames. In fact, a phase may last more than a decade given a sufficiently early diagnosis. If the patient's situation and specific level of competence and the moment in dementia process are not defined, a framework will have only limited practical applicability.

Through consensus and research, multidisciplinary cooperation will contribute to establishing much-needed precise definitions of the patient's situation and phase of dementia.³ However, even more work is needed with regard to non-clinical aspects of daily life. Examples include the ability to vote among increasingly senile populations in different phases of dementia, or the validity of a patient's risky financial decisions. As a result, the subject has obvious sociological implications which must be recognised. It is very possible that our informed and guided society will also have to opine and decide.⁴

Mass interest in such a complex and vitally important subject is a breakthrough that will benefit everyone involved, including medical and legal specialists, but especially patients with dementia and their families. I would like to thank Neurología for providing a forum for this topic.