Family, friends, neighbours... People in their lives often play a central role in supporting patients. But they lack recognition. And that can in turn affect their health. Changing demographics are only making matters worse. And legislation slow in catching up.
In Switzerland, 20% of the population age 15 and over is responsible for organising the day-to-day life of a relative, helping with their care or managing their administrative duties and finances. This work is crucially important to society. It accounts for 80% of the help needed by people with health issues and dependent adults, says Mercedes Puteo, director of the Lausanne-based organisation Espace Proches, which provides caregivers with information, assistance and support through a free hotline.
“These are not just people who are kindly going out of their way for others, but an indispensable resource. A pillar of our health system.”
Fabien*, 55, has experienced this first hand. He became the administrative guardian for his aunt, who was suffering from the onset of Alzheimer’s disease. No one in the family wanted to take care of her, and she was still independent enough to avoid moving to a long-term care facility. Fabien had to make a choice. “At the same time, I was separating from my wife, and space was opening up in my life. I contacted Pro Senectute, a foundation that defends the rights and dignity of the elderly. They gave me a lot of helpful information. I decided that I would be the one to take care of my aunt from now on.” At the time, Fabien didn’t know how long his help would be needed. His aunt passed away two years ago, at the age of 97, five years after he took on the task of caring for her. “I set things up in a way so that I could delegate tasks, because I quickly realised that the work would likely exhaust me.”
Preconceived notions are common when it comes to this spontaneous help from relatives. “About ten years ago, when people were first becoming politically aware of the importance of these family caregivers, we thought that the people in need of assistance were mostly elderly,” Mercedes Puteo recalls. “But it’s all individuals with a health problem: a spouse suffering from cancer, a child with a disability, or a dependent parent.”
Mercedes Puteo points out that the risk of exhaustion or excessive strain is very real for family caregivers.
Vaud on the forefront
In addition to all its listening, information and guidance services, the canton of Vaud has created a card that people can carry to identify the person as a caregiver. That means that, in the event of an accident, information is shared and the healthcare staff know that a temporary replacement is needed to support the person cared for. “For example, in the common case of an elderly man who takes care of his wife who has Alzheimer’s,” says Valérie Borioli Sandoz, director of CIPA, “if something happens to him, the card warns others that his spouse, who is at home, needs care.” This system has also been adopted in Geneva and Neuchâtel.
Valérie Borioli Sandoz notes that the situation of family caregivers varies greatly from one canton to another, and even from one city to another. In Fribourg, a daily allowance of about 15 to 25 Swiss francs is provided. “It's not much, but at least there’s some symbolic recognition.” Valais grants a monthly lump-sum compensation. According to the Federal Council’s 2014 report, the amount is between 500 and 1,500 Swiss francs, determined based on a progressive scale that takes into account the degree of disability of the person being cared for. The canton of Vaud provides various benefits that depend on the situation, including monthly benefits of up to 2,500 Swiss francs for cases of severe disability.
“Many factors can cause this: a desire to control everything, inability to let go, lack of trust in health facilities, as well as unawareness of available resources,” she says, adding that some people handle the role very well, find the right help and manage to maintain a balance. “Studies show that the risk of health problems and burnout is increasing for caregivers. In fact, caregivers actually have a reduced life expectancy. And that should not be taken lightly.”
The problems start when the balance is disrupted between the amount of stress and the resources to cope with it, says Jean Bigoni, cantonal coordinator of psychology consultations for family caregivers (CPA). “People come to us when they can’t take it anymore. They do everything they can and then shut down. It’s not unusual for them to contact us once they have their own health problems.” The Lausanne University Hospital psychologist explains that symptoms caused by this loss of balance are both physical (ulcers, back pain, sleep or appetite loss) and psychological (depression, anxiety, irritability).
He says that family caregivers often go to the CPA when they become alarmed by their own behaviour. They react with irritation or even aggression towards the people they are helping. “Our work is to understand the situation, why these people lose their balance, to figure out what’s causing their distress,” he explains. The psychologists then help them to pinpoint the issues they’re getting caught up in, for example, not being able to say no or constantly seeking recognition, so that they can be freer to make choices.
In addition to the risk of losing balance, Mercedes Puteo also believes that the lack of recognition for family caregivers is a major problem. It is not just about thanking them, but recognising the key role they play in the healthcare context. “At the hospital, their true value still often goes unappreciated. But working with family caregivers is vital and worth it for everyone involved. One man knew exactly how to motivate his wife so that everything would goes well during a consultation,” the expert recalls. “But the doctors didn’t listen to him, and the patient fell several times. That could have been avoided. Healthcare professionals are experts in their field, while family caregivers are experts on the person being cared for. Cooperation is essential.”
In Bern, the Swiss umbrella organisation Community interest group for family caregivers (CIPA) wants these people to have a legal status. “A legal definition is important for establishing their rights and duties, as most of them hold down a job at the same time. From there, the cantons can draw up their own legislation,” says Valérie Borioli Sandoz, director of CIPA. She adds that a legal status for family caregivers would designate them as essential partners for hospitals and long-term care facilities, and would make their life easier. She also points out that this status exists in other countries, including Austria, Belgium, France and Germany.
The federal act on improving the reconciliation between work and care for family members was passed on 1 January 2021. Valérie Borioli Sandoz believes the law is a first step but does not go far enough. “It only covers family caregivers who work and emergency circumstances, ignoring more prolonged situations. Plus, it doesn’t adequately take into account long-term care.” The expert says we need to take urgent action.
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