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More than 50 million people, provide care for a chronically ill, disabled or aged family member or
friend during any given year
Source: U.S. Department of Health and Human Services, Informal Caregiving: Compassion in Action.
Washington, DC: 1998, and National Family Caregivers Association, Random Sample Survey of Family
Caregivers, Summer 2000, Unpublished
The typical family caregiver is a 46-year-old woman caring for her widowed mother
who does not live with her. She is married and employed. Approximately 60% of family caregivers are women.
Source: National Alliance for Caregiving
and AARP, Caregiving in the U.S., 2004.
1.4 million children ages 8 to 18 provide care for an adult relative; 72% are caring for
a parent or grandparent. Fortunately, most are not the sole caregiver.
Source: National Alliance for Caregiving
and the United Hospital Fund, Young Caregivers in the U.S., 2005.
30% of family caregivers caring for seniors are themselves aged 65 or over; another 15% are
between the ages of 45 to 54.
Source: U.S. Department of Health and
Human Services, The Characteristics of Long-term Care Users. Rockville: Agency for Healthcare Research
and Quality, 2001.
17% of family caregivers are providing 40 hours of care a week or more.
Source: National Alliance for Caregiving
and AARP, Caregiving in the U.S., 2004.
The value of the services family caregivers provide for "free" is estimated to be $306 billion a year.
That is almost twice as much as is actually spent on homecare and nursing home services combined
($158 billion).
Source: Arno, Peter S., "Economic Value of Informal Caregiving," presented at the Care Coordination and the Caregiving Forum, Dept. of Veterans Affairs, NIH, Bethesda, MD, January 25-27, 2006.
The need for family caregivers will increase in the years ahead. People over 65 are expected to increase
at a 2.3% rate, but the number of family members available to care for them will only increase at a 0.8%
rate.
Source: Mack, Katherine and Thompson, Lee
with Robert Friedland. Data Profiles, Family Caregivers of Older Persons: Adult Children. The Center on
an Aging Society, Georgetown University, page 2, May 2001.
Economics of Caregiving
"Women who are family caregivers are 2.5 times more likely than non-caregivers to live in poverty and
five times more likely to receive Supplemental Security Income (SSI)."
Source: Study conducted by researchers at
Rice University and data compiled from the Health and Retirement Study funded by the National Institute
of Aging and conducted by the University of Michigan, 1992-2004.
Caregiving families (families in which one member has a disability) have median incomes that are more
than 15% lower than non-caregiving families. In every state and DC the poverty rate is higher among
families with members with a disability than among families without.
Source: Disability and American Families:
2000, Census 2000 Special Reports, July 2005.
Out of pocket medical expenses for a family that has a disabled member who needs help with activities of
daily living (eating, toileting, etc.) are more than 2.5% greater (11.2% of income compared to 4.1%) than
for a family without a disabled member.
Source: Drs. Altman, Cooper and Cunningham, "The Case of Disability in the Family: Impact on Health Care Utilization and Expenditures for Non-disabled Members," Milbank Quarterly 77 (1) pages 39 – 75, 1999.
In 2000 typical working family caregiver lost $109 per day in wages and health benefits due to the need
to provide full time care at home.
Source: Stucki, B.R. and Mulvey, J., "Can Aging Baby Boomers Avoid the Nursing Home? Long-term Care Insurance for Aging in Place." American Council of Life Insurers, March 2000.
Impact of Caregiving
Elderly spousal caregivers with a history of chronic illness themselves who are experiencing caregiving
related stress have a 63% higher mortality rate than their non-caregiving peers.
Source: Schulz, R. and Beach, S. R.,
Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study. Journal of the American
Medical Association, Vol. 282, No. 23, December 15, 1999.
Stress of family caregiving for persons with dementia has been shown to impact a person’s immune system
for up to three years after their caregiving ends thus increasing their chances of developing a chronic
illness themselves.
Source: Drs. Janice-Kiecolt Glaser and
Ronald Glaser, “Chronic stress and age-related increases in the proinflammatory cytokine IL-6.”
Proceedings of the National Academy of Sciences, June 30, 2003.
Family caregivers who provide care 36 or more hours weekly are more likely than non-caregivers to
experience symptoms of depression or anxiety. For spouses the rate is six times higher; for those caring
for a parent the rate is twice as high.
Source: Cannuscio, C.C., C. Jones, I. Kawachi, G.A. Colditz, L. Berkman and E. Rimm, Reverberation of family illness: A longitudinal assessment of informal caregiver and mental health status in the nurses' health study. American Journal of Public Health 92:305-1311, 2002.
A wife's hospitalization increased her husband's chances of dying within a month by 35%. A husband's
hospitalization boosted his wife's mortality risk by 44%.
Source: Nicholas D. Christakis,
Professor, Health-care Policy, Harvard Medical School, Boston and Suzanne Salamon, M.D., Associate Chief,
Geriatric Psychiatry, Beth Israel Deaconess Hospital, Boston, New England Journal of Medicine, Feb. 16,
2006.
Family caregivers experiencing extreme stress have been shown to age prematurely. This level of stress
can take as much as 10 years off a family caregiver's life.
Source: Elissa S. Epel, Dept of Psychiatry, Univ of Calif, SF, et al, From the Proceedings of the National Academy of Sciences, Dec 7, 2004, Vol 101, No. 49.
Family caregivers report having a chronic condition at more than twice the rate of non-caregivers.
Source: Health and Human Services,
Informal Caregiving: Compassion in Action. Washington, DC: Department of Health and Human Services. Based
on data from the National Survey of Families and Households (NSFH), 1998 and the National Family
Caregivers Association, Random Sample Survey of Family Caregivers, Summer 2000, Unpublished and National
Alliance for Caregiving and AARP, Caregiving in the U.S., 2004.
Caregiving and Work
Family caregivers comprise 13% of the workforce.
Source: Wagner, D. and Neal, M., "Working Caregivers: Issues, Challenges and Opportunities for the Aging Network". National Family Caregivers Support Program, Program Development Issues Briefs, Administration on Aging, DHHS, 2002.
59% of family caregivers who care for someone over the age of 18 either work or have worked while
providing care. And 62% have had to make some adjustments to their work life, from reporting late to work
to giving up work entirely.
Source: National Alliance for Caregiving
and AARP, Caregiving in the U.S., 2004.
37% of human resource directors did not feel that their organizations made a real and ongoing effort to
inform employees of available assistance for managing work and family responsibilities.
Source: Galinsky, E. and Bond, J.T., The
1998 Business Work-Life Study. New York: Families and Work Institute, 1998.
Women average 14 years out of the paid labor force, primarily because of caregiving responsibilities.
Source: Maatz, Lisa, President's Commission to Strengthen Social Security. Older Women?s League, August 2001.
American businesses can lose as much as $34 billion each year due to employees' need to care for loved ones 50 years of age and older.
Source: Metlife Mature Market Institute
and National Alliance for Caregiving, MetLife Caregiving Cost Study: Productivity Losses to U.S.
Business, July 2006.
10% of employed family caregivers go from full-time to part-time jobs because of their caregiving
responsibilities.
Source: National Alliance for Caregiving
and AARP, Caregiving in the U.S., 2004.
Both male and female children of aging parents make changes at work in order to accommodate caregiving
responsibilities. Both have modified their schedules (men 54%, women 56%). Both have come in late and/or
leave early (men 78%, women 84%) and both have altered their work-related travel (men 38%, women 27%).
Source: MetLife Mature Market Institute,
Sons at Work: Balancing Employment and Eldercare, June 2003.
Over 65% of employers believe that health benefits improve employees’ health. Sixty percent (60%) believe
it increases moral and 39% believe it increases productivity.
Source: Collins, S.R. et al, Job-based
Health Insurance in the balance: Employer Views of Coverage in the Workplace. The Commonwealth Fund,
Commonwealth Fund Supplement to the 2003 National Organization Study, March 2004.
Although hard research does not exist to prove it, researchers in the field think that only 2% of
employed family caregivers actually take advantage of the benefits their companies offer.
Source: Dr. Donna Wagner, Professor,
Director of Gerontology Program, Towson University.
Caregiving and Healthcare
Over 40% of U.S. primary care physicians think they don't have enough time to spend with patients.
Source: The Commonwealth Fund Quarterly
Report, Volume 6, Issue 3, Fall 2000 and 15 Schulz, R. and Beach, S. R., Caregiving as a Risk Factor for
Mortality: The Caregiver Health Effects Study. Journal of the American Medical Association, Vol. 282,
No. 23, December 15, 1999.
Family caregivers provide the overwhelming majority of long term-care services in the U.S.,
approximately 80%. Over three-quarters (78%) of adults living in the community and in need of long-term
care depend on family and friends as their only source of help; 14% receive a combination of family and
purchased assistance, and only 8% used paid help only.
Source: Thompson, L., Long-term care:
Support for family caregivers [Issue Brief]. Washington, DC: Georgetown University, 2004 and Long-Term
Care Financing Project, Long-term Care Users Range in Age and Most Do Not Live in Nursing Homes. U.S.
Agency for Healthcare Research and Quality, November 8, 2000.
In 2000, 50% of caregivers reported that different providers gave different diagnoses for the same set
of symptoms and 62 % reported that different providers gave other conflicting information. Another
recent survey found that 44% of physicians believe that poor care coordination leads to unnecessary
hospitalization, and 24% stated it can lead to otherwise unnecessary nursing home stays.
Source: Partnership for Solutions,
Chronic Conditions: Making the Case for Ongoing Care. Johns Hopkins University, December 2002.
22% of family caregivers say they need help communicating with physicians.
Source: National Alliance for Caregiving
and AARP, Caregiving in the U.S., 2004.
Over 40% of family caregivers provide some type of "nursing care" for their loved ones, such as giving
medications, changing bandages, managing machinery and monitoring vital signs.
Source: National Family Caregivers
Association, Random Sample Survey of Family Caregivers, Summer 2000 and Levine, C., Rough Crossings:
Family Caregivers' Odysseys through the Health Care System. New York: United Hospital Fund, 1998.
One-third of family caregivers who change dressings and manage machines receive no instructions.
Source: Henry J. Kaiser Family
Foundation, Wide Circle of Caregiving, 1998.
Caregiver Self-Awareness
Over 90% of family caregivers become more proactive about seeking resources and skills they need to
assist their care recipient after they have self-identified.
Source: National Family Caregivers
Association, Survey of Self-Identified Family Caregivers, 2001.
83% of self-identified family caregivers believe their self awareness led to increased confidence when
talking to healthcare professionals about their loved one’s care.
Source: National Family Caregivers
Association, Survey of Self-Identified Family Caregivers, 2001.
For over 75% of family caregivers it was the act of helping their loved one with personal care that
contributed to their self-identification.
Source: National Family Caregivers
Association, Survey of Self-Identified Family Caregivers, 2001.
For 60% of family caregivers, their loved one’s diagnosis and their interaction with the health care
system made them aware that they were family caregivers.
Source: National Family Caregivers
Association, Survey of Self-Identified Family Caregivers, 2001.
Focus group research suggests that family caregivers do not recognize that public policy has a direct
impact on their day-to-day lives. Many are uncomfortable even thinking there might be a connection.
Source: Lake Snell Perry & Associates,
A Report on Formative Focus Groups, conducted for the Family Caregivers Self-Awareness and Empowerment
Project, a joint program of the National Family Caregivers Association and the National Alliance for
Caregiving, September 2001.
State by State Statistics
The economic value of family caregiving is detailed here in a state-by-state comparison of the number of family caregivers in the country, the number of hours they spend on caregiving responsibilities, and the market value of those services. As noted above the most recent estimate of the value of family caregivers' services is $306 billion annually. This report is based on the state-by-state statistics for 2004 and prepared in August of 2006 by NFCA and the Family Caregiver Alliance's National Center of Caregiving in conjunction with Peter S. Arno, PhD, Department of Epidemiology and Population Health, Montefiore Medical Center, Albert Einstein College of Medicine. The data and methodology are based on Dr. Arno's previous study, Economic Value of Informal Caregiving: 2004.
Click here to download a PDF of NFCA's state-by-state-profile of family caregiving in alphabetical order.
Click here to download a PDF of NFCA's state-by-state-profile of family caregiving in rank with the largest caregiving population first.
Click here to download Peter Arno's PowerPoint on the Economic Value if Informal Caregiving.
Note: Survey statistics sometimes seem to contradict each other. That's because each study or survey has its own methodology, its own set of variables, data sources, etc. It doesn't mean one is right and the other wrong. It does mean you need to understand how the survey was developed and constructed.
Comparing Survey Stats and Understanding Why They Differ explains this in more detail.
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