“The health system would not survive without caregivers”: doctor Hélène Rossinot advocates for a better structured caregiver pathway

Hélène Rossinot : “Les aidants devraient rester des proches et pas des pros”. – Astrid di Crollalanza

Hélène Rossinot, médecin spécialiste de santé publique qui vient de publier "Prendre soin des aidants" (éditions Vuibert), donnera une conférence ouverte à tous sur le sujet jeudi 3 octobre, à 17 h, au Musée de la Romanité.

How many caregivers are there in France ? And who are they ?

It is estimated that there are eleven million caregivers, about half of whom are unaware that they are caregivers. Some do not even know the word, they do it “because it is normal”, they say, out of duty or financial constraints. In fact, there is no typical caregiver profile. It is estimated that there are 500,000 to one million young people under the age of 18 who help their parents, very elderly people who accompany a spouse who suffers from Alzheimer's or a disabling illness, parents who care for a disabled child. There are also the not so rare cases of a 60-year-old person with cancer who returns to live with their parents, who are also beneficiaries of the APA. Anyone can be a caregiver and be cared for, in turn or at the same time. The average age of caregivers is 52 and 57% are women. It is estimated that by 2030, a quarter of employees will be caregivers.

Is their only common point that they remain largely invisible??

The term “caregiver” for an aging person only became law in 2015. It has progressed a little in recent years, but we are starting from a very long way off. There have been some advances, such as caregiver leave, but it is extremely poorly designed and very restrictive, so it is almost never taken. It is indeed compensated whether one helps an elderly person who benefits from the APA or a person whose disability rate is greater than 80%, in all other situations, therefore the majority, one is not compensated!

Nurse, taxi, psychologist, home help… the job description of the caregiver is revealing and dizzying

They are the Swiss Army knives of everyday life and their missions are as varied as they are time-consuming. This ranges from psychological support to medical monitoring (medications, infusions, etc.), from daily living activities (hygiene, meals, home maintenance, etc.) to the coordination of care (physiotherapist, nurse, etc.) without forgetting the burden of administrative management where there is still a lot of progress to be made! Caregivers do not realize the amount of skills involved. Many caregivers work extra, so it is very heavy on a daily basis. In some cases, the work of caring represents 35 hours per week alone, etc. It's good that employers can measure it.*

Caregivers' Day Thursday October 3 on the Esplanade

In the Gard, 40,000 adults and 23,500 minors are caregivers for a sick, disabled or aging relative. “To better support them, eight caregiver resource centers are opening in the Gard, supported by the National Solidarity Fund for Autonomy (CNSA)”, the Department recalls. These are places of welcome, listening, psychological support, orientation towards suitable systems…
The day of caregivers, organized this year by Codès 30, brings together on the Esplanade on Thursday, October 3, from 10 a.m. to 4 p.m., stands of different institutions and associations that support them. A highlight since 49% of caregivers are suffering from their situation.

The day will be punctuated by creative and well-being workshops for caregivers (aromatherapy, foot reflexology, massage, etc.). At 10:15 a.m. and 2 p.m., tai chi session. At 11:15 a.m., dance show with the Danse la vie association, and at 3 p.m., inclusive dance show with Le Sens des âmes. Every hour, on the Codes stand, caregivers will come to share their experiences. A special reception area for relatives receiving care will be set up all day long.

At 5pm, Hélène Rossinot will give a lecture on the theme “Helping caregivers” at the Musée de la Romanité. Open to all.

It is a daily material and psychological burden. What are the risks for caregivers ?

There is a risk when the load becomes too heavy, when you are isolated, there are risks for mental health, burnout, depressive and anxiety disorders, insomnia, etc. Not to mention musculoskeletal disorders. The problem is that the caregiver realizes that they need help when it is already late. The ideal is to do prevention and get support from the beginning. The earlier you recognize yourself as a caregiver, the more a journey begins until you ask for help. But fortunately there are also situations that go well, and it is important to say that.

Is there an element of guilt in the commitment of caregivers ?

Yes, of course it plays a role. Caregivers have the feeling of never doing enough and never well enough. They give themselves "false obligations", for example seeing their mother every evening, and these untenable expectations weigh heavily on their shoulders. There is also the guilt of neglecting the rest of the family or one's work. And finally the guilt of not being well oneself. And sometimes the "Take care of yourself&quot becomes one injunction too many.

Can we better structure the status of the caregiver??

In the same way that there is a patient pathway, I would like there to be a caregiver pathway to always have the right person to talk to at the right time. When someone becomes a caregiver, a person must identify all their physical, psychological, and social needs and follow them throughout the process, reassess the assistance provided to make it more effective and prepare for the aftermath as well. Because there is a double grief: the grief of the person but also the grief of their role as caregiver. This is the idea I have been defending since my first book. And it is progressing, this system is being tested at the cancer center in Lyon, for example. And I find it remarkable.

Are caregivers the crutch of a failing health care system ?

Yes. We couldn't do anything without them, especially in a system where 100% home care is the target. But it's absolutely not feasible without the family. The coordination between community medicine and the hospital is so poor that it relies on caregivers, a caregiver pathway could solve that.

For patients, the family caregiver is more reassuring…

It's reassuring. But many caregivers are so overwhelmed by the technical side that they no longer even have time to be close, to provide moral and emotional support. The ideal would be for the system not to rely too much on caregivers so that they can find their place as loved ones and not as professionals!

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