Rethinking autonomy in Alzheimer’s disease
Dominique Waissbluth
Usually, people with Alzheimer’s disease are considered no longer capable of performing autonomous acts. This claim is not only common among loved ones, but also among carers. It is usually taken to be established after medical and legal assessments that state this inability. However, this all rests on a very restrictive idea of autonomy, which leaves no room for rethinking the various forms for patients to take part in various decision-making processes.
I became interested in finding out a way to articulate a more flexible notion of autonomy that allows people with Alzheimer’s to be involved in their own lives and daily choices. This is especially after finding a radical real-life example: Hogeweyk. Hogeweyk is a dementia village that is built as a small city with services like a cinema, cafes, supermarkets, a hair salon, a pharmacy, and the residents’ apartments. Here, every single worker is actually a person trained in dementia care. People with dementia living here experience more freedom and diminished anxiety symptoms, hence improving their well-being (see https://www.dementiavillage.com/).
From a philosophical perspective, I suggest a notion of autonomy that grows apart from traditional views. I believe Alzheimer’s patients enjoy degrees of autonomy in a relational, gradual, and regressive manner. This threefold definition helps provide instances of more freedom in decision-making of their daily routine, as well as a more dignified manner of care for those with Alzheimer’s disease.
Firstly, there is the relational dimension to autonomy. Mackenzie and Stoljar (2000) elaborate a feminist perspective on autonomy that offers reflections on agency, identity, and decision-making in the context of women and other minorities experiencing oppression. They argue for a relational account of autonomy that includes in its definition the surrounding world. Relational autonomy diverges from the isolating idea of the self-made man. According to this, our relationships and contexts are crucial for configuring our autonomy. They also distinguish procedural and substantial autonomy. The first is content-neutral, requires self-reflection, and does not account for situations of oppression (Mackenzie and Stoljar 2000, p. 95). Substantial autonomy, by contrast, relies on the feedback given by people’s values and interests (Stoljar 2024, Section 3). However, in the case of Alzheimer’s patients, self-reflection may be a problem in certain stages, but not the idea of having interests or values. So, for autonomy for Alzheimer’s patients, we will consider a content-laden approach of relational autonomy, and also the idea of non-isolation. No one is fully independent, and that is even clearer in Alzheimer’s disease. In my view, a person with Alzheimer’s enjoys a kind of autonomy that is exercised (enacted) through someone else’s agency.
Secondly, we need to ask about the character of gradual autonomy. Jaworska (1999, 2009) argues for a concept of autonomy for people with Alzheimer’s disease in two ways. On the one hand, in ontological terms, she maintains that a new person arises with Alzheimer’s disease, granted the psychological discontinuity. On the other hand, she recognizes the continuity of the capacity to value. The latter is particularly important, since it secures a minimal level of autonomy that continues to be exercised by Alzheimer’s patients. In her words (1999, 130): “[t]he capacity to value merely makes possible the most minimal and basic level of autonomy; other capacities are necessary to further develop and perfect autonomy.” If there is a minimal level, then autonomy is not merely a capacity that either exists or does not. Beyond ideal autonomy, Alzheimer’s patients may then be on a spectrum regarding autonomy. They possess a minimal degree of autonomy in their capacity to value things. A person may still value something even when they are not able to have a picture of their life as a whole, or even when lacking full employment in intellectual capabilities. For this, we only need to recognize that, apart from being relational, autonomy comes in degrees.
Third, and last, there is evidently a regressive dimension to autonomy, which comes from at least two sources of inspiration: the notion of progressive autonomy for children and teens, offered by UNICEF (2021); and the Mexican governmental law (2022), which uses the notion of regressive autonomy to seek to better protect their elders. Alzheimer’s disease is neurodegenerative in character. Hence, a regressive account of autonomy is entirely suitable, accommodating the fact that abilities diminish with the progress of symptoms. This is not the same as claiming that there is no autonomy at all. By contrast, it acknowledges that there is a diminished level of autonomy, and for that, there is always a need to adapt the support given to patients at different stages. The more the condition worsens, the more the patient needs from others to enact their gradually diminishing level of autonomy.
I believe we must rethink the concept of autonomy in view of specific cases. Traditional notions of autonomy (especially those coming from rationalist philosophical conceptions) are fairly unjust when it comes to real people in concrete situations. Fully recognizing the relational, gradual, and regressive dimensions of human autonomy helps us approach critical situations with Alzheimer’s patients in better ways. They continue to be people; they continue to exercise wishes and value certain things; and like everybody else, they depend upon intricate relations of dependency with other agents. This is not just about philosophy, but about practical matters of life and policy. We need a less paternalistic care for people with Alzheimer’s in medical institutions; we need a dignified care that involves the person in decision-making processes; and we must challenge public policies established by, for example, the Chilean law of interdiction by dementia, which does not seem to consider the nuances of dementia, which could benefit from better informed notions of autonomy.
References
Jaworska, A. (1999) “Respecting the Margins of Agency: Alzheimer’s Patients and the
Capacity to Value”, Philosophy and Public Affairs, 2(2): 105-138.
__________ (2009) “Advance Directives and Substitute Decision-Making”, The Stanford
Encyclopedia of Philosophy (Summer 2017 Edition), Edward N. Zalta (ed.), URL= <https://plato.stanford.edu/archives/sum2017/entries/advance-directives/>.
Mackenzie, C., y Stoljar N., editores. (2000) Relational Autonomy. Feminist Perspectives on Autonomy, Agency, and the Social Self. New York, Oxford University Press
Stoljar, N. (2024) “Feminist Perspectives on Autonomy”, The Stanford Encyclopedia of
Philosophy (Summer 2024 edition), Edward N. Zalta & Uri Nodelman (eds.).
Tercer Tribunal Colegiado en Materia Civil del Primer Circuito. (2022) Tesis: I.3o.C.7 K
(11a.), Gaceta del Semanario Judicial de la Federación. Libro 19, Tomo IV, página
3743, Undécima Época, Materias Constitucional, Común, Registro digital 2025548,
voz: PERSONAS ADULTAS MAYORES.
UNICEF, Chile, VV.AA. (2021) “El derecho de los niños, niñas y adolescentes a ser oídos”, Documento de Trabajo Número 2, p. 6 en https://www.unicef.org/chile/media/6581/file/derecho%20a%20ser%20oido.pdf