Critical Analysis of the Scales Assessing Assistance Provided by Family Caregivers.

Background: While the literature on caregiver-assessment scales often focuses on the quantitative and psychometric aspects of the scales, we wished to examine the discourse on caregiving, caregivers and care-recipients (particularly, people with dementia) produced by these scales. What discourse does it help to crystallise and naturalise by dint of being used widely, with unresolved ethical and political issues?

Methods: We analysed two well-known scales that are widely used in both research and clinical settings and conceived among others for people with dementia: Zarit and, offering a sharp contrast, the CRA. We performed semantic network analysis using EVOQ software (https://www.

[Autonomy and dementia Part II: autonomy and representation: a possible combination?].

This paper, based on a critical review of the medico-social literature, questions the representation of patients with dementia in relation to the autonomy perspectives presented in a previous article. In the canonical perspective of autonomy (defined as a rational decision-making by a stand alone self), the surrogate is the spokeperson of the subject's wills when he was competent because he knows these wills through advance directives or assuming them via substituted judgment. Best patient's interest is then depreciated because it is focused on the present incompetent self.

[Autonomy and dementia].

In the course of centuries, the value of autonomy has been greatly emphasized, though the content of the concept has varied. Between various meanings it has taken, which one does allow to retain it amongst the care objectives as long as possible during the dementia process? A critical examination of the philosophical and medico-social literature shows that the different meanings of autonomy can be organized according to two poles. The first one, the canonical one, is the most usual, and regards autonomy as a matter of internal competences of the subject (such as rationality, reflexivity, memory).

[Informal care: burden or significant experience?].

A review of the scientific literature devoted to informal care of demented people has shown two ways of conceiving this form of help. The oldest and dominant one sees caregiving as a burden; the more recent and less frequently reported perceives caregiving as a significant experience for the caregiver but also for the care receiver. This paper will focus on this second perspective, and describe some of the meanings that the care experience can have.

[Journey to dementia].

The diary of the writer Annie Ernaux, Je ne suis pas sortie de ma nuit (I did not get out of my night) relates the author experience of accompanying her mother, suffering from Alzheimer's disease. This journal is analysed to understand what allows the writer to come closer to her mother, despite the disease progression. How does manage Annie Ernaux to exchange with her mother till the end of the dementia process? The aim of this paper is to understand, for Annie Ernaux first, then for other family carers, how to avoid reducing the patient to be a "burden" to be cared for.