Caregiving
Caregiving and Long-Term Care
Fact Sheet
Sheel Pandya, AARP Public Policy Institute
Barbara Coleman, AARP Public Policy Institute
December 2000
Table of Contents: Introduction | Prevalence of Informal Caregiving | Characteristics of Informal Caregivers | The Costs of Caregiving | Support for Caregivers
Introduction
Informal caregivers are the backbone of the long-term care system in the US today, providing much of the assistance to individuals who want to remain in their homes and need help with daily activities, including eating, bathing, and dressing, or shopping, transportation, and taking medications. This form of care is generally unpaid and may help avoid or delay institutional placement of the individual or the need for more "formal," or paid, caregiving services.
Prevalence of Informal Caregiving
In 1997, the National Family Caregiver Survey, sponsored by the National Alliance for Caregiving and AARP, documented the prevalence of caregiving in the US. The study found that in 1997, nearly one in four (23% or 22.4 million) US households was involved in helping care for an individual 50 years old or older, at some point during the previous twelve months.
In just the month prior to a 1996 survey conducted by the Bureau of the Census, 9.3 million people reported providing regular, unpaid care to a family member or friend.
Characteristics of Informal Caregivers
The typical caregiver is a married woman in her mid-forties, provides an average of 18 hours/week of caregiving, works full-time, lives near the care recipient, and has an annual household income of approximately $35,000, according to the 1997 National Family Caregiver Survey. Thirty-one percent of caregivers take care of two or more people, and the majority of caregivers (64%) are employed (see Figure 1).
The Costs of Caregiving
The total personal and financial costs of caregiving can be high for working caregivers and their employers. In 1997, MetLife sponsored a study (using data from the 1997 National Family Caregiver Survey) that examined the cost of caregiving to businesses in loss of productivity among caregivers who work full-time. The study estimated that US employers lose between $11.4 and $29 billion per year.
In 1999, the MetLife Mature Market Institute interviewed a subset of the 1997 respondents, who provided care for at least eight hours per week. The Metlife research revealed that caregiving responsibilities seriously affected the productivity of caregivers, particularly because of altered work schedules (see Figure 2).
Initially, the caregivers surveyed for the 1999 study had underestimated the duration of time they would spend caring for a family member or friend; only 46% estimated spending more than two years. In fact, the average length of time spent on caregiving was about eight years, with about one-third of the respondents providing care for 10 or more years.
Almost all respondents reported helping the care recipient with some expenses, most frequently with food, transportation, or medications. On average, caregivers helped with expenses for two to six years and spent a total of $19,525 in out-of-pocket expenses.
The value of the labor contributed by informal caregivers is substantial. A recent study by Arno et al. estimated the national economic value of informal caregiving in 1997 to be $196 billion, which is equivalent to about 18 percent of total national health care spending ($1.1 trillion in 1997).
Support for Caregivers
Caring for a family member or friend can be a stressful and challenging event, one that can affect the emotional, physical, and financial well-being of caregivers.
Some states have developed comprehensive, statewide caregiver support programs that offer an array of services, including respite care, adult day services, legal and financial counseling, and referral services designed to relieve caregiver stress. For example:
- California has created a network of 11 Caregiver Resource Centers that provide information, education, and support to caregivers of adults with Alzheimer's disease and other cognitive impairments. In fiscal year (FY) 1999-2000, 12,342 clients received at least one service.
- Pennsylvania implemented a Family Caregiver Support Program in 1992. In FY 1999-2000, 6,257 people were served, and total expenditures were about $10.6 million.
In October 2000, Congress reauthorized the Older Americans Act. The amended act includes funding for a National Family Caregiver Support Program under Title III. This program will provide support and respite care to family members who are caring for their older relatives at home. Services include training, counseling, information, and assistance, as well as respite care for caregivers who often juggle work with caregiving responsibilities. The 2001 budget for this program is $125 million.
Sources
National Alliance for Caregiving & AARP, Family Caregiving in the US, Findings from a National Survey, 1997;J. M. McNeil, Preliminary Estimates on Caregiving from Wave 7 of the 1996 Survey of Income and Program Evaluation Participation, US Census Bureau, 1999;
The Metlife Study of Employer Costs for Working Caregivers, June 1997;
The Metlife Juggling Act Study, Balancing Caregiving with Work and the Costs Involved, November 1999;
P.S. Arno et al., The Economic Value of Informal Caregiving, Health Affairs, 18(2), March/April 1999;
S. H. Zarit et al., Stress Reduction for Family Caregivers: Effects of Adult Day Care Use, Journal of Gerontology: Social Sciences, 53B(5), 1998;
B. Coleman, Helping the Helpers: State Supported Services for Family Caregivers, AARP, Washington D.C., June 2000.
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Written by Sheel M. Pandya and Barbara Coleman, AARP Public
Policy Institute
December 2000
©2000 AARP
May be copied only for noncommercial purposes and with
attribution; permission required for all other purposes.
Public Policy Institute, AARP, Public Affairs, 601 E Street, NW,
Washington, DC 20049
Pub ID: FS82