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  1. TITLE:A Decade of Informal Caregiving, written February 2004, modified February 14, 2005 http://ihcrp.georgetown.edu/agingsociety/pubhtml/caregiver1/caregiver1.html

  2. Author:Center on an Aging Society (Katherine Cargill-Willis 4/14/2005)

  3. Introduction: In 1982, informal caregivers spent on average four hours per day -- or an average of 28 hours per week -- providing care. By 1999, caregivers continued to provide nearly the same amount of care -- an average of 26 hours per week. Between 1989 and 1999, the number of caregivers of older persons increased from approximately 3.2 million to 3.4 million -- an increase of about 6%. For this report, the term informal caregiver refers to the primary, unpaid helper of people age 65 or older residing in the community who need assistance with one or more basic everyday activities. Basic everyday activities are daily routine tasks that involve either activities of daily living (ADL), such as eating, bathing, using the toilet, or moving about, and/or instrumental activities of daily living (IADL) such as doing housework, managing finances or medication, or transportation. The term "older people" refers to the population age 65 or older.

  4. Who are the primary caregivers: The majority of older people who need help performing basic everyday activities rely exclusively on assistance from family members or friends. Spouses and adult children continue to provide the majority of informal long-term care. Roughly 40% of informal caregivers were spouses in both 1989 and 1999. Compared to a decade earlier (1989), adult children were slightly more likely to provide care than spouses. A slightly larger portion of informal caregivers were adult children in 1999 than 1989 (44% compared to 36% in 1989. Other family members and friends were more likely to be secondary caregivers.

  5. Spouses provide the most hours of care: In 1999, spouses provided more hours of care per week than any other type of informal caregiver. Wives and husbands provided an average of 28 hours and 15 hours of care per week, respectively. Adult children also devoted a large amount of their time providing long-term care. Daughters provided, on average, 13 hours of care per week and sons provided 10 hours of care per week.

    More men are taking on the role of informal caregiver than a decade ago: In 1989, women accounted for almost three-fourths of informal caregivers compared to slightly more than two-thirds today. Over the past decade, the proportion of men providing informal care has increased from 26% to 31%. The increase in male caregivers could continue into the future, potentially increasing the supply of caregivers and decreasing the burden on female family members to provide care to those in need of assistance. Factors contributing to this change are:

    • Increased life expectancy of men
    • Increased labor force participation of women,
    • The changing composition of families
    • The socialization of gender roles

  6. Older informal caregivers continue to be the primary source of care: Over the past decade, the proportion of family caregivers age 65 or older has decreased slightly from 49% to 47% but continue to represent the majority of informal caregivers. Today, caregivers age 45 to 64 represent a larger proportion of caregivers than in 1989 – 40% and 35%, respectively. The proportion of primary family caregivers under the age of 45 has decreased slightly from about 16 % in 1989 to 13 % today. The average age of informal caregivers has increased slightly from 60.3 years of age in 1989 to 62.7 years of age in 1999.

  7. Caregiver living arrangements and stress have not changed much: Primary caregivers most often live with the person for whom they are providing care. In 1989 and 1999, about two-thirds of informal caregivers were living with the care recipient. Caregivers living with the care recipient are more likely to report higher levels of stress associated with their caregiving responsibilities. Providing long-term care can be both physically and emotionally stressful. The proportion of primary caregivers reporting their own health status as fair or poor has not changed much. The proportion of family caregivers reporting their own health as fair or poor decreased slightly from 31 % to 29 % between 1989 and 1999.

  8. Fewer caregivers have competing childcare responsibilities: Over the past decade the proportion of informal caregivers with children under the age of 18 has decreased. In 1989 about 25% of informal caregivers had children under the age of 18 living in the same household. In 1999 10% of informal caregivers were also caring for children under the age of 18 in the home.

  9. Employment: A substantial minority of caregivers continue to work while providing care to older family members or friends. In 1989 and 1999, nearly one-third of informal caregivers were employed. Furthermore, a larger proportion of employed caregivers are working full-time (35 or more hours per week) than a decade ago. In 1989, about 67% of employed caregivers were working full time compared to 78% in 1999. Today, employed caregivers work an average of 38.4 hours each week compared to 36.9 hours per week in 1989.

    10. In 1989, the majority of employed caregivers – 81%-- decreased the amount of hours they worked and 42% rearranged their work schedules to provide more hours of informal long-term care. In 1999, 17 % of employed caregivers worked fewer hours, 31% rearranged their work schedule, and 16% took time off from work without pay to provide long-term care. Although employed caregivers provide fewer hours of care compared to non-employed caregivers, they continue to provide substantial amounts of care. Today, working caregivers provide, on average, 17 hours of care per week and in 1989 they provided an average of 18 hours of care per week.

  10. Formal care for older people is not widely used: Informal care continues to be the primary source of long-term care for older people who need help with performing basic activities to live in the community. Among the older population with limitations, 67% relied exclusively on informal care from family members or friends in 1989 compared to 64 % in 1994. A larger proportion of older people with limitations, however, did supplement informal care with formal, paid assistance than a decade ago. Roughly one-fourth – 24% -- of the older population with limitations relied on both formal and informal care in 1989. In 1994, nearly a third -- 28 % -- received formal and informal care. However, the proportion of older persons who relied exclusively on formal care declined. The proportion of older people living in the community with limitations performing basic everyday activities that relied solely on formal paid care for their long-term care needs decreased from 9 % in 1989 to 7.8 % in 1994.

  11. Conclusion: Over the past decade there has been a decline in disability rates and in mortality rates. As a consequence, more people are living longer but developing a chronic and debilitating condition at an older age. This has affected the timing of when care is needed and it has also affected the nature of the care that is needed. Caregivers are generally older than they were in the past because the need for long-term care is appearing later in life. Moreover, since much of the decline in disability rates has been in IADL limitations and not ADL limitations, the type of care needed has changed.

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