Dementia and Identity

Today’s post is by Giovanni Boniolo, Professor of Philosophy of Science and Medical Humanities in the Department of Neuroscience and Rehabilitation at the University of Ferrara, Italy.

Giovanni Boniolo

Since 2018, I have been appointed as Scientific Director of the Civitas Vitae Research Centre (CVRC). This is a new department of the Fondazione OIC onlus (Padova, Italy) devoted to seeking, implementing and disseminating sociological and ethical innovative procedures and strategies aimed to improve the quality of life of people who are vulnerable and fragile due to age or disability. 

The Fondazione OIC onlus is an innovative nursing home with about 1500 guests (from about 65 to about 100 years old) and 1700 operators, where the values of longevity as a resource, intergenerationality, positive culture of the limit, and fragility are intended as opportunities for social networking.

Since its establishment, the CVRC has been realizing several initiatives and research programs. In 2019, we organized a workshop on Rethinking Aging from the point of view of a philosophy of science interbreed with ethics and sociology (the contributions are published in History and Philosophy of the Life Sciences). On that occasion, I presented a talk on identity and dementia that has been published in the collection just mentioned.

This paper (“Demented patients and the quandaries of identity: setting the problem, advancing a proposal”) was intended to enter the vivid debate concerning the impression that dementia brings loss of the self, or loss of identity, or loss of personhood. This loss is alleged to occur since dementia negatively affects, step-by-step, the proper functioning of the main higher mental functions (memory and decision-making capacity). 

This decline, especially in the middle and late stages, could lead to the idea that the self, or the identity, or the personhood, has completely changed and is replaced by a different one. Further on, that decline could lead also to the idea that demented individuals would no longer have moral status, since they would no longer be persons. 

However, what do ‘self’, ‘identity’ and ‘personhood’ mean? Before addressing the problem of whether a demented individual has a loss of self, identity, or personhood, and then provide a judgment about his or her moral status, we should have a clear idea of what we mean by those terms. In my paper, first, I have provided some clues to clarify the meaning of the terms. 

Next, without using vague or ambiguous term like “self” and “personhood,” I have proposed an empirical (more precisely, biological) perspective on identity, based on the notion of ‘whole phenotype’ (I call it the Whole Phenotype Account, or WPA), which has allowed me to argue that the demented individuals maintain their identity, in particular their whole phenotype identity. Moreover, I have advanced some remarks on how it is possible to use the WPA to cope with the questions related to demented individuals’ loss of the capacity to make moral decisions.

On the basis of the WPA, the conceptual analysis I proposed resulted in showing that there are no strong reasons to claim that a demented individual is a different individual compared to whom they were before the disease. Claiming that they are different means starting from very partial accounts of identity where, many times, vague concepts (as self), or ambiguous concept (as personhood) are introduced. We do not need this kind of accounts when we are in the unlucky position of being forced to consider the dementia of our relatives. 

We need an open mind to understand that the demented individual in front of us is not a different individual from what they were before: they are the same, as the WPA allows to argue. Unfortunately, they have a terrible pathology and we have to help them and take care of them as far we can and until we can. We have to respect them and their choices and decisions as long as they are capable of choosing and deciding. Then, when this capacity has vanished, we have to continue respecting not only them, but also the choices and decisions they made.