Informal caregivers are not health or care professionals, but voluntarily provide care for another person, usually a family member. Caring for another person is complex, involving mental, health, financial, and physical burdens. In recent decades, the status and life situation of informal caregivers has been increasingly acknowledged, and many countries, including Israel, have promoted welfare services specifically for them. According to the 2019 Social Survey of the Israel Central Bureau of Statistics (ICBS), about one-fifth (21%) of the adult population of Israel were caring for a person with an illness or disability.
In recent years, a variety of services and interventions have been developed for family members caring for persons with disabilities, but there is no systematic information about the unique characteristics and needs of these family members. Hitherto, no systematic study has examined the relationship between burden of care and two distinct types of care: caring for a person with disability and caring for an older adult. Moreover, many studies on the burden of primary informal carers focus on a particular type of disability, but we know little about the characteristics and needs of the distinct group of informal carers for persons with disabilities. This detracts from decision-making processes and affects the ability to develop optimal interventions. Accordingly, the Myers-JDC-Brookdale Institute has initiated a study on this subject.
- Characterize the population of primary informal caregivers – those whose care is intensive and ongoing and are the main target audience for developing services, as opposed to secondary informal caregivers.
- Examine the unique characteristics of primary informal caregivers who care for people with disabilities, as opposed to those who care for older adults.
- Understand the relationship between caring for a person who needs care due to illness or disability and the primary informal caregiver’s situation in a variety of life areas, including education, employment, financial status, emotional states, support networks, etc. This, by presenting a life area status report for main informal caregivers caring for people with disabilities, as opposed to those caring for older adults and those not providing care to another person.
Secondary analysis of the data of the 2019 ICBS Social Survey, conducted among a representative sample of adults (aged 20+) living in the community. One of the topics examined in 2019 was helping a relative with an illness or disability.
In this study, primary informal caregivers are defined as follows: an individual providing significant assistance to other persons who (1) lives with them; (2) is a first-degree relative (spouse, child, or parent) but does not live with them; or (3) is a second-degree relative who does not live with them, but whose care requires more than four hours a week.
- In 2019, there were more than half a million (554,000) main informal caregivers in Israel, of whom 349,000 (63%) provided care for an older adult, and 205,000 (37%) cared for a person with a disability.
- A relationship was found between caring for another person and the caregivers’ situation in a variety of life areas. As opposed to those not providing such care, caregivers’ work was negatively affected, they found it more difficult to meet their monthly expenses, their physical health was poorer, and they were more likely to experience negative emotional states.
- In some areas, the burden of care affected primary informal caregivers living with the persons under their care more than it affected those not living with them: fewer were employed despite being of employment age; more of them were adversely affected in their work; and more of them felt depressed, unable to cope with problems, or lonely.
- Family members providing care for a person with a disability had different characteristics from those caring for an older adult. As in other countries, in Israel the most common profile of main informal caregiver for an older adult was a married woman of employment age who cares for a parent. Conversely, the most common profile of a main informal caregiver for a person with a disability was a woman of employment age living with her child, spouse or a parent under her care. Accordingly, their support networks were different. Moreover, the caregivers of persons with disabilities were younger and less educated, and they felt lonelier.
- The characteristics of Arab informal carers were different from those of their Jewish counterparts: they were younger, and fewer of them employed a paid helper or caregiver in their homes. Compared to Jews, Arabs providing care for an older adult also found it more difficult to meet their monthly expenses.
- About a quarter of the main caregivers of older adults (23%) and of persons with disabilities (26%) reported having a disability themselves, as opposed to 21% of those not providing care to another person.
- One strength identified among primary informal caregivers in Israel was digital literacy. The rate of internet use among caregivers of persons with disabilities was found to be similar to that among persons not caring for another; among those providing care to older adults, the rate was even higher. More caregivers than non-caregivers used the internet to obtain government services. Nevertheless, 35-54-year-olds caring for persons with disabilities used the internet less than their peers caring for older persons.
- Continue developing optimal services and interventions for primary informal caregivers:
a. Develop interventions in the workplace to help reduce the burden and contribute to the individual and social resilience of caregivers
b. Develop online supports and enhance the digital literacy of caregivers, and examine, in greater depth, the reasons why 35-64-year-olds caring for a person with disability use the internet less than do their peers caring for an older person
2. Develop services according to the characteristics of the primary informal caregivers:
a. Among all caregivers – take into consideration the fact that about one quarter of the caregivers have a disability themselves.
b. Among caregivers for persons with disabilities – take into account major elements in their profile, including the finding that about half live with the person under their care, and the fact that they are less educated than those caring for older adults
c. Regarding Arab main informal caregivers, additional research is required to determine and describe their unique needs and characteristics.
Citing Suggestion: Nagar Eidelman, R., Konstantinov, V., & Barlev, L. (2023). Characteristics and Needs of Informal Caregivers of People with Disabilities and Older Adults in Israel. RR-943-23. Myers-JDC-Brookdale Institute. (Hebrew)