Some 9,3 million people were considered “caregivers” in 2021 in France, according to a study by the Department for the Animation of Research, Studies and Statistics (Drees) published Thursday, February 2.
The caregiver is a social figure that takes different forms depending on whether you are helping a disabled child, an elderly person, a person with a neurodegenerative disease... It is only since 2015 that the law (called ASV) recognizes the importance of the role played by family caregivers (or close caregivers) who take care of a dependent elderly person.
"A close caregiver of an elderly person is considered to be their spouse, the partner with whom they have concluded a civil solidarity pact or their partner, a relative or an ally, defined as family caregivers, or a person residing with them or maintaining she has close and stable ties, which helps her, on a regular and frequent basis, on a non-professional basis, to perform all or part of the acts or activities of daily life. (CASF, L113-1-3, 2015)
Among these carers, it is estimated that 3 million are affected by Alzheimer's disease. This observation led us to build a research project with 76 carers who live in the Grand-Ouest and to whom we offer a maintenance every six months to confront their experience, their experiences, their contradictions with the moral and social injunctions to which they are subject.
We note that the notion of exhaustion and/or its derivative forms (exhausted, exhausted, exhausting, exhausting) is very present in the discourse of the press which relays the political decision and, to a lesser extent, in the discourse of caregivers themselves. themselves. However, the terms used do not reflect the dramatic stakes involved in this status.
A detour through an exploration in the national and regional press
The current context is strongly rooted in political and health issues because they question the management of the aging population. The press evokes the helper of Alzheimer's patients through the frozen constructioncaregiver burnout, describing the helper in the relationship of care, support, and reducing and normally ephemeral state to an essential characteristic. This construction functioning as pre-constructed confirms the representation of the helper in the general opinion.
“Another objective also, alert on the exhaustion of the helper. In some cases, it happens that he is the one who leaves first. (Le Monde, April 2016)
“It promotes home support for vulnerable people while limiting the risk of burnout for the carer. (Le Progrès, July 2017)
“Respite is now offered in every department as a solution to reduce caregiver burnout. (Le Figaro, December 2019)
“The objective of the respite is to fight against the exhaustion of the caregiver, but also against the withdrawal into oneself and the isolation of the helping couple. (South-West, April 2021)
What Caregivers Say About Their Burnout
The carer, on the other hand, evokes exhaustion as the result of a long process of care that ends in extreme fatigue and a point of no return. In the following example, the gradation of attitudes and emotions (fear of mistreatment, nervousness and exhaustion) brings the caregiver back to reason by favoring the supervision of the patient by professionals in an institution.
Florence, caregiver for her husband:
“You have to learn how to dress him, put on the socks, help him get out of bed and everything, all that is techniques in fact, nobody teaches you you have to adapt, so we screw up his back, I would be 20 years older than my husband, how could I have done? I wouldn't have been able to and so I was afraid of becoming abusive, I was on the verge of exhaustion and so that's why I tell myself that it's better over there (in Ehpad) even if we don't care too much about it. Well, he's safe, he's eating, that's the main thing. »
In the following example, it is the caregiver's hypervigilance over her mother that leads to exhaustion and an awareness of placement in an institution.
Valérie, caregiver with her two sisters, from their mother:
“My mother, she went out at night so we followed her on her phone, we had put a door opening detector which sent us alerts on our phones, so the last few months I remember at the end we took turns to have nights to sleep and then we realized that sometimes with the detector, she opened the door but she didn't come out and that suddenly we were really annoyed and we ended up really, against our will, we put the camera , the webcam on the computer.
The apartment was small enough to tell herself did she really go out or did she just open the doors, well anyway, it didn't matter that we were awake, the door opening had been triggered and how many times have I taken the car at 4 a.m., I was going to look around the neighborhood and it's true that at that point I had reached a level of total exhaustion, the day I was like a zombie at work, constantly with my phone sending me alerts and growing anxiety… and there, we said, well, we have to do something because it can't go on anymore. »
Figure 1: Distribution of exhaustion, exhausted, exhausting, exhausted, exhausted segments within the interviews.
A search for terms exhaustion, exhausted, exhausted, exhausting throughout the corpus of interviews shows that, to express theépuisement, carers favor the verbal construction (to exhaust, exhausted, exhausting) which involves the speaker rather than the substantive construction which is limited to evoking a state and which is perhaps more in the medico-social field.
We can also hypothesize that the notion of exhaustion would rather be used in writing and would then be replaced by a more familiar form in the interviews "I'm exhausted", "I can't take it anymore...", which would justify the under-representation of this notion in the interviews.
Constructions and meaning of the notion of exhaustion
In the interviews, caregivers approach this notion with the following verbs: To avoid, to limit, to reach, to prevent, to anticipate, to lead, to lead (to), to lead (to), to guard (from), to delay exhaustion :
“You know, our decision-makers should do something to prevent burnout because once it's there, it's too late. »
with adverbs up to, so much so that, at the threshold of, at the edge of :
“She wanted to get out of there no doubt and she was walking until she was exhausted and at that point, boom, so we had to place her. »
“His companion who helps him is on the verge of depression, on the verge of exhaustion, on the verge of losing control. »
From the definition ofépuisement proposed in the Atilf online dictionary, we note that in the context of helping an Alzheimer patient, the notion ofépuisement goes well beyond the mobilization of an individual resource. When that individual resource is consumed, theépuisement characterized constitutes a paroxysmal point from which the shift is irreversible and generally leads to placement in an institution of the patient and care for the caregiver.
In this context and faced with the exhaustion of the helper (moreover, would a helper who is not exhausted be a good helper in the eyes of others?), the prevention discourses of public action advance the right to respite to respond in a curative and universal way and unfortunately not preventive and not particularizing.
The caregiver is a heterogeneous figure, we are not helping in the same way at the beginning of the appearance of the disease or when the disease is already installed, we are not helping in the same way depending on whether we helps his spouse, a relative or a friend. However, exhaustion, which is not easy to recognize because it is loaded with unthought, moral and social norms, is inevitable when the illness of the person being cared for worsens.
Image credit: Shutterstock/Ground Picture