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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, et.al).

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).

  • Caregivers are present in an estimated 22.9 million households (21 percent of U.S. households).
  • The average age of a caregiver is 46; 58 percent are between the ages of 18-49 years; 42 percent are 50 years of age or older. Minority caregivers are more likely to be 18-34 years old than white caregivers.
  • 61 percent are women; 39 percent are men.
  • Younger caregivers tend to care for younger care recipients.
  • 59 percent work either full or part-time while providing care; 66 percent of male caregivers work full or part-time; 55 percent of female caregivers work full or part-time
  • On average, caregivers provide 21 hours of care per week; 17 percent provide more than 40 hours of care per week; and the average length of care is 4.3 years.
  • Female caregivers provide more hours of care and a higher level of care than male caregivers.
  • 40 percent of female caregivers report experiencing emotional stress as a result of caregiving, and 26 percent of male caregivers report experiencing such stress.
  • 42 percent of female caregivers and 34 percent of male caregivers reported they did not have a choice in becoming a caregiver.
  • Older family caregivers experiencing strain are 63 percent more likely to die than their non-caregiving peers.

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:

  • The typical caregiver in the New York aging services system is a 64-year-old female, who has either high school or some college education, and spends more than 40 hours a week providing care to her mother.
  • Most (66 percent) caregivers are married and close to one fifth of the population reported household incomes below $20,000.
  • Individuals receiving care are more likely to be female (64 percent) and a majority (85 percent) are ages 75 or older.
  • Many care receivers have significant health needs, with 94 percent of the caregivers reporting that their care receivers had at least one health problem. The most prevalent health condition of care receivers was Alzheimer’s disease or other dementia: 75 percent reported this condition. Care receivers also have many functional limitations.
  • The majority (85 percent) of care receivers have one or more impairments in taking a bath or shower, walking, dressing, getting in or out of a bed or chair, getting around inside the home, using the toilet, and eating. Further, 79 percent of individuals receiving care have three or more activities of daily living limitations as reported by the caregivers.
  • Caregivers served in New York caregiver support programs report spending an average of 62.6 hours a week providing care, which is considerably higher than the national average of more than 20 hours estimated in a recent AARP report (2008).
  • The care and assistance that caregivers provided ranged from 24 hours a day care or supervision to assisting in specific tasks, such as: transportation (96 percent), financial management (85 percent), arranging for care or services (86 percent), housekeeping (86 percent), arranging for home repair (82 percent), helping with medical needs (79 percent), performing home repair (77 percent), personal care (68 percent), and paying for services (68 percent).
  • Caregivers participating in New York caregiver support programs tend to have a heavy care load: 36 percent reported that their care receivers cannot be left alone at home, and 42 percent reported that their care receivers can only be left alone for short periods of time or need to be checked on in person several times a day.

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:

  • $2.8 billion to replace employees who leave the work place for caregiver responsibilities;
  • $3.4 billion for absenteeism due to caregiving;
  • $2.8 billion for workday interruptions due to caregiving responsibilities,
  • $825 million for partial absenteeism due to caregiving responsibilities;
  • $1.6 billion for unplanned time away from work due to a caregiving crisis (1997 data);
  • $1.4 billion for unpaid leave due to caregiving responsibilities; and
  • $3.4 billion for reducing hours from full-time to part-time due to caregiving responsibilities.

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



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