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Introduction and Background

Who Are Informal Caregivers?

Informal caregiving refers to unpaid family members, friends, neighbors, and grandparents and other relatives who provide full or part time care to persons with disabilities or special care needs, and grandchildren. Informal caregiving helps preserve crucial kinship ties and provides an inestimable social and economic service to society (Burnette)1.

Informal caregiving - often chosen, sometimes foisted upon an individual - is a vital part of our society. The services provided by the informal caregiver should be recognized and sustained. These individuals need the support of their family, friends, and community. Support - financial, emotional, hands-on, and educational - is necessary to ease caregiver strain and prevent caregiver burnout.(Glassey)

National Profile of Informal Caregivers

Nationally, unpaid family caregivers provide the largest source of long-term care services in the United States. Nearly 7 million people (family, friends, and neighbors) provide care to persons aged 65 and older who need assistance with every day activities. The typical person most likely to be providing care to an older person is a 46-year-old female, who has some college education, works, and spends more than 20 hours a week providing care to her mother (Gibson and Houser). As care recipients age, there is a much higher likelihood of receiving care from a spouse. Nearly one-quarter (22 percent) of caregivers who are themselves 65 and older are caring for a spouse. Some studies have found that a significant percentage of caregivers (17 to 24 percent) are caring for a friend or neighbor as opposed to a family member (Family Caregiver Alliance). Nationwide, there are an estimated 1.3 to 1.4 million child caregivers between the ages of 8 and 18 years old. Of all households in the United States with a child 8 to 18 years old living there, 3.2 percent include a child caregiver (National Alliance for Caregiving and United Hospital Fund). There are between 3.9 and 5.2 million young adult caregivers (18 to 25 years old) in the United States (Levine, Hunt,

National Facts and Figures: Caregivers of All Ages

In the United States (U.S.), 44.4 million caregivers aged 18 and older provide unpaid care to another adult who is 18 or older (21 percent of the adult U.S. population).

New York State Profile of Informal Caregivers

New York State, with more than 2.2 million caregivers, ranks third in the nation in number of informal caregivers. Caregiver arrangements exist in approximately 734,000 New York State households, or one in ten of all New York State households. An estimated 2.2 million adults are providing over 2 billion hours of special care to family members with significant needs for assistance in New York State (Family Caregiver Alliance). In addition, there are 297,239 children living in grandparent-headed households in New York, or about 6.3 percent of all the children in the state, and there are 111,806 children living in households headed by other relatives. Of the children living in households headed by grandparents or other relatives in New York, 165,493 are living there without either parent present and 143,014 grandparents report they are responsible for their grandchildren living with them (AARP, 2005).

New York State Facts and Figures: Aging Services Network

In 2008, the New York State Office for the Aging (NYSOFA) conducted a Caregiver Support Programs Participants Survey (NYSOFA, 2009), the results of which underscore the importance of caregivers and their roles in the lives of older adults in the State’s communities:

Economic Value of Informal Caregiving

It is estimated that at least 80 percent of community-based long-term care is provided by family or other informal caregivers. This voluntary assistance reduces public spending for long-term care supports and services, and has an estimated annual economic value of $25 billion in New York State out of an estimated national total of $375 billion, which is more than the total Medicaid expenditures for nursing home and home and community-based services combined (Houser & Gibson). Informal caregivers perform numerous activities to assist care recipients to live at home in the community. These caregiving activities range from providing 24 hours-a-day assistance or supervision, to assisting in daily tasks such as transportation, housekeeping, personal care, and financial management.

Employment Status

Most caregivers are employed; nearly six in ten caregivers (59 percent) either work or have worked while providing elder care to family members. Between 25 and 35 percent of all workers report that they are currently providing or have recently provided care to someone aged 65 and older. (Family Caregiver Alliance).

Employment Status % of All Caregivers
Employed full-time 48%
Employed part-time 11%
Retired 16%
Not employed 9%

Workplace Impacts

With over 44.4 million Americans providing care to another adult, the impact on the workplace is substantial. The losses to the economy when they leave, lose their jobs or fail to work to their full productivity are significant. Nationally, losses are estimated to cost businesses $33.6 billion a year due to employees' need to provide care to people aged 50 and older (MetLife Mature Market Institute and National Alliance for Caregiving). Working caregivers often suffer work-related difficulties due to their dual caregiving roles. Among working caregivers caring for a family or friend aged 65 and older, two-thirds report having to rearrange their work schedule, decrease their hours, or take an unpaid leave in order to meet their caregiving responsibilities (Family Caregiver Alliance).

About 62 percent of caregivers report having had to make some work-related adjustments to fulfill their caregiving responsibilities. More than half of working caregivers (57 percent) say they have to go into work late, leave early, or take time off during the day to provide care. Working caregivers report having to take a leave of absence (17 percent), go from full-time to part-time work (10 percent), quit working entirely (6 percent), lose job benefits (5 percent), turn down a promotion (4 percent), or choose early retirement (3 percent).

The MetLife Mature Market Institute reports the following estimated costs to employers:

1Publications referenced in this Report are cited in full at the end of the Report.