There are some 1.5 million non-hired Israeli caregivers – family members and close friends who take care of children, adults, and the elderly, with disability, diseases, dementia, and physical and emotional trauma – but they are nearly invisible to the establishment.
They do this while managing a home and career, providing an average of 21 hours of support per week, for an average period of four-and-a half years, this without any payment. There are also tens of thousands of foreign workers who are paid but who also need advice and support.
A caregiver usually provides complex nursing care, emotional and cognitive support, and care management in and outside the home. The role leads to positive feelings, but also to a complex family, health, mental, occupational and economic burden.
The rate of caregivers will increase significantly in the coming decades, due to several trends, such as the aging of the population, increasing life expectancy, the growing burden of chronic diseases, an increase in the rate of working women, those wounded from the war in Gaza, and the complexity of the medical system.
Family caregivers often neglect their own health, stressed from multiple burdens and pressure from jobs, not sleeping enough, not going for medical screening tests, and the like. As a result, they are liable to become ill and to eventually need caregivers themselves.
This expanding phenomenon has far-reaching implications: from difficulties in functioning at the personal level, through undermining social resilience to harm in the workplace and the national economy.
Many countries are aware of the phenomenon and its consequences and are designing a national strategy that recognizes the unique needs of caregivers. They provide information and guidance services, psychological support, financial assistance and relief in the workplace, helping caregivers to fulfill all their roles more effectively and maintain their quality of life.
But sadly, in Israel, awareness of the phenomenon is low, there is no clear policy that defines caregivers and their needs, services are few and specific, and most of them don’t regard caregivers as a direct target audience for care and support. Therefore, there has been an immediate and urgent need to establish a Knesset lobby to press for change and develop a national policy and dedicated services enabling this group to effectively manage the support process and their lives.
The new lobby was initiated by Yesh Atid MK Tatiana Mazarsky, who has been awarded certificates and diplomas for professionalism and successful management in the field of community healthcare; Yesh Atid MK Meirav Cohen who was previously Social Equality minister; Shas MK and Knesset Health Committee chairman Yonatan Mashriki; and others.
Caregivers Israel had a vision to give family caregivers recognition, support, and rights
A NONPROFIT group established in 2014 – Caregivers Israel – was a promoter outside the Knesset that had a vision to give family caregivers recognition and support, rights, and tools to make it possible for them to continue in their role while maintaining their health and quality of life. Through the lobby, it views its major role as providing education and outreach among the public and elected officials, promoting legislation and policy, and developing evidence-based services.
Its founder and CEO Rachel Ledany, a graduate in organizational development studies with a BA in psychology and an MA in counseling, has over 25 years of professional experience in promoting at-risk populations through development and management roles in leading public and social organizations.
She told The Jerusalem Post that when she was 40 and the mother of three young children, she was working with JDC Israel when her 46-year-old husband Gadi suddenly contracted the serious blood disease lymphoma. “Fortunately, he has recovered since then, but my parents came to live with us to help out. One day, I attended a conference on caregiving, and then I saw a TV documentary on a caregiver for a cancer patient. I was inspired to change things. I resigned from my job, saw there was plenty on the subject abroad but almost nothing in Israel – and suddenly, six years after Gidi got sick, I realized I had been a caregiver.”
THE CENTRAL Bureau of Statistics did a survey before the Corona pandemic on caregivers of people over the age of 20. They found there were then a staggering 1.2 million first-degree-relative caregivers. Since then, due to the war in Gaza and so many people suffering from physical and emotional trauma, there are many more.
According to Ledany, however, the caregivers have only a few benefits, lack government recognition and no budget except for those who take care of the demented. Many are embarrassed to ask their employers for time off or other help, and some have to leave their jobs.
She said that her organization gets a small donation from the government, and depends mostly on volunteers and services to organizations. There are only two paid staffers, 30 trained volunteer advisers, and three professional volunteers. Caregivers Israel sent representatives to Knesset committee meetings, but establishing an official lobby wasn’t ripe until the 2023 war, when the need to support caregivers in overburdened families became clear.”
REGISTERED LOBBIES can suggest legislative bills, are taken seriously by serious MKs, and can promote awareness of the issues. Ledany and Ben-Gurion University Prof. Tuvia Horev produced a 250-page, Hebrew-language book, the title translating to Towards a Policy of Recognition and Support for Family Caregivers, with all available data on the subject and how to aid caregivers.
Laws have to be changed, she continued. A caregiver for a patient with ALS (amyotrophic lateral sclerosis – a fatal neurological disease that gets worse over time) is entitled to five extra sick days annually, compared to 60 for those caring for cancer patients, many of whom recover. All who care for people with serious illnesses should get many more days, she insisted.
“One out of every four workers in jobs is a caregiver,” Ledany said. “Workplaces can help their caregivers through policy changes. The staff who need help should automatically get assistance, more days off, and other benefits without having to ask for them.”
Her telephone consultation center linked to the website (https://caregivers.org.il/) assigns a counselor where caregivers can have their problems addressed at no cost and simplify navigation in the sea of information.
DVORA CORN, a veteran family therapist who, with her husband, oncology Prof. Ben Corn established the nonprofit organization Life’s Door (Gisha Le-Haim in Hebrew) said in an interview “we aim to empower hope, meaning, and quality of life throughout illness, aging, and at the end of life. We engage health care professionals, patients, elderly, family members, caregivers, clergy, community members, lay leaders, and policy makers to promote hopefulness, well-being, dignity, and compassion within healthcare, social service and community settings.”
Family caregivers are more likely to be injured in work accidents: 22% compared to 11% of non-caregiver; to be absent from work: 61% of women caregivers compared to 52% of women who are not caregivers; and 57% of caregivers took sick days compared to 47% of non-caregivers.
Corn, who was thrilled by the establishment of the lobby, noted that caregivers “are invisible in the population. Mostly women, they are often in the ‘sandwich generation’ with young children and elderly parents who need them. They sacrifice themselves on an altar and need support. The caregivers are the next patient, so the country will need more services.”