Caregivers (family)

The caregivers are a new concept in the world of health, born of support for people with chronic diseases , suffering from disability or situation dependence , by people around them, most often family members. In France, caregivers are now more than 8 million. Their particular situation has given rise to new public health questions, particularly with regard to their recognition, the impact of their status on their personal and professional life and even their physical and psychological state of health.

What is a caregiver?

The concept of caregiver is a recent concept in the world of health. Caregivers are all people, adults but also children, who support a loved one on a daily basis in one of the following situations:

• A chronic disease ;
• A physical or mental handicap ;
• An addiction whatever its nature.

To note ! Some caregivers can be very young, when children have one of their parents with a serious illness, a disability or being in a situation of dependency.

Support from caregivers can take many different forms, each situation being able to constitute a particular case. For example, the caregiver can:

• Perform daily care;
• Host the loved one;
• Prepare meals;
• Go shopping;
• Administer the treatments;

A caregiver can help a loved one in only one aspect of life, or in many aspects, with a time devoted to his role of caregiver which varies greatly, from a few hours a week to several hours a day.

The taking into account of caregivers, the beginning of their recognition by society, has gradually imposed itself by their growing and large number. In France, currently, more than 8 million people are caregivers. A figure that is certainly underestimated, according to caregivers associations.

Caregivers have always existed, but their special status is increasingly recognized by society, which takes into account the repercussions of this support on:

• Support for sick , disabled or dependent people ;
• The personal and professional life of caregivers;
• The state of health of caregivers.

Today, the recognition of caregivers is a major public health issue, with significant changes in the status of caregivers over the years.

To know ! A caregiver does not have a legal status in the strict sense, unlike, for example, guardianship (legal measure to protect an adult if they are no longer considered capable of defending their own interests) or the caregiver. trust (person designated to assist and support a person in their health procedures). On the other hand, a caregiver can exercise guardianship and / or be the trusted person of the loved one, but these three roles are not

Recognition of caregivers

The recognition of caregivers inevitably requires the recognition of the essential roles they play in supporting their loved ones, which can be:

• Parents ;
• Children;
• Spouses;
• Other family members;
• Close friends.

Indeed, they work with sick people , people with disabilities or dependency , alongside the various professionals who can participate in the care of these people, that is to say:

• Medical teams (doctors, nurses, physiotherapists, psychologists, etc.);
• Home help services;
• Social services (social workers).

But unlike these professionals, caregivers act without prior professional training, without their roles being clearly established and recognized, while having emotional ties with the person being supported.

Furthermore, the roles played by caregivers are not strictly defined and depend very much on the context of the person being helped. The role played by the caregiver can be very variable, in particular according to several parameters:

• The state of health of the accompanied person;
• The availability of the caregiver;
• The caregiver’s abilities;
• The number of caregivers in the entourage of the person being helped.

The recognition of caregivers by society ultimately involves several aspects:

• Respect for the initial link between the caregiver and the loved one supported;
• Respect for the personal and professional life of the caregiver;
• Taking into account and respecting the role or roles played by the caregiver by the other workers and by the rest of the entourage;
• Access to information, support, training and mediation in their caring role.

The right to respite

Many caregivers are confronted with difficulties of various kinds:

• The pursuit of their professional activity;
• The preservation of their personal life;
• Lack of recognition;
• Insufficient support;
• Exhaustion, physical or mental;
• Consequences on their well-being and even on their own health, this time again physical or mental.

Faced with these many difficulties, caregivers, and in particular carers’ associations, are working for a right to respite . Respite is essential for caregivers to:

• Have time for them, while their loved one is being looked after;
• Preserve their personal and professional life;
• Limit the risk of conflict with the loved one;
• Take a step back from their role as a caregiver.

Gradually, public authorities are recognizing the special status of caregivers and their right to respite . This recognition is reflected in particular by two recent texts:

• A 2004 decree on the organization of temporary accommodation for disabled people and the elderly in certain establishments and services;
• The introduction in 2005 of a right to respite for family caregivers of people aged over 60 in a situation of dependency , within the framework of the law relating to the Adaptation of Society to Aging.

Among the so-called respite solutions, available so that caregivers can be entitled to respite , it is possible to cite:

• Reception facilities for sick , disabled or dependent people who can take care of the accompanied person for a determined period to temporarily relieve the caregiver;
• Home service structures and home health services (home hospitalization, home care);
• Structures offering caregivers information, support, training and opportunities to share experiences.

These respite solutions can be funded through different means, such as:

• Health Insurance, in the case of accompanied children;
• Health Insurance and complementary organizations for people with disabilities ;
• Personalized Allowance for Autonomy (APA) within the framework of the right to respite for people over the age of 60;
• Certain financial aid from supplementary pension funds and mutual societies.

To note ! Helpers can be supported by the social services of their municipality or department, in order to be advised, to obtain all the information relating to existing assistance and to be guided in their procedures. Caregivers associations are also present to support caregivers in their daily difficulties.

What is caregiver leave?

Recently, to recognize the importance and materially support caregivers, the state has set up a specific aid, close off helping , replacing family support leave since 1 ^st January 2017. This leave allows anyone , under certain conditions, to temporarily cease his professional activity to take care of a relative with a disability or with a particularly serious loss of autonomy.

To obtain caregiver leave , the caregiver must meet the following conditions:

• Be an employee with at least one year of seniority in the company;
• Have a family or close bond with the accompanied person;
• The accompanied person must reside in France on a stable and regular basis.

The duration of caregiver leave is limited in time, and is fixed:

• By collective agreement or company or branch agreement;
• At 3 months in the absence of agreement or convention.

This leave may be renewed, without being able to exceed a maximum period of one year over the entire career of the caregiver.

Caregiver leave is requested by the caregiver from his employer at least one month before the desired start date of the leave. However, caregiver leave can begin immediately under the following conditions:

• An emergency related to the state of health of the accompanied person;
• A crisis situation requiring urgent action by the caregiver;
• The sudden end of the reception in an establishment of the accompanied person.

The employer cannot refuse family caregiver leave to one of its employees, unless the latter does not meet the conditions for obtaining the leave. The caregiver, unpaid during the leave, cannot exercise any professional activity during the caregiver leave, except being an employee of the accompanied person, if the latter receives the APA or the disability compensation benefit (PCH).

At any time, the caregiver can request that the family caregiver leave be stopped when one of the following situations occurs:

• The death of the accompanied person;
• The reception of the accompanied person in an establishment;
• The use of a home help service to assist the accompanied person;
• A significant reduction in the caregiver’s resources;
• The taking of family caregiver leave by another family member.

At the end of the caregiver leave , the employee returns to his or her initial job or a similar job in the company, with at least equivalent remuneration, and with the benefit of his seniority (which continues during the caregiver leave) .

necessarily associated.