Caregiving takes many forms. Many of us help older, sick, or disabled family members and friends every day. We know we are helping, but we don't think of ourselves as caregivers. We are glad to do this and feel rewarded by it, but if the demands are heavy, over time we can also become exhausted and stressed. We think we should be able to handle caregiving roles on top of busy work and family schedules and begin to feel guilty and depressed as our stamina wanes.
About 44 million Americans provide 37 billion hours of unpaid, "informal" care each year for adult family members and friends with chronic illnesses or conditions that prevent them from handling daily activities such as bathing, managing medications or preparing meals on their own. Family caregivers, particularly women, provide over 75% of caregiving support in the United States. In 2007, the estimated economic value of family caregivers' unpaid contributions was at least $375 billion, which is how much it would cost to replace that care with paid services.1
The short answer is most of us, at some point in our lives. Caregivers are daughters, wives, husbands, sons, grandchildren, nieces, nephews, partners and friends. While some people receive care from paid caregivers, most rely on unpaid assistance from families, friends and neighbors.
Caregivers manage a wide range of responsibilities. In your family, for example, are you the person who:
In small doses, these jobs are manageable. But having to juggle competing caregiving demands with the demands of your own life on an ongoing basis can be quite a challenge.
With the 65+ age group expected to double to 70 million people by 2030,2 family caregivers increasingly provide care for aging parents, siblings, and friends, most of whom have one or more chronic conditions3 and who wish to remain in their own homes and communities as they age.4 Others belong to the "sandwich generation," caring for children and parents at the same time.
Caregiving roles and demands are impacted by a number of other factors, including:
For some people, caregiving occurs gradually over time. For others, it can happen overnight. Caregivers may be full- or part-time; live with their loved one or provide care from a distance. Caregivers provide a wide range of services, from simple help such as grocery shopping, to complex medical procedures. For the most part, friends, neighbors, and most of all, families, provide–without pay–the vast majority of healthcare in this country.
It is easy to become overwhelmed as a new caregiver. Five steps that can help are:
Data from many studies and reports reveal the following information about caregivers:
Recent medical advances, shorter hospital stays, increasing life spans with better management of chronic illnesses, limited discharge planning, a shortage of homecare workers, and the expansion of home care technology have increased the caregiving responsibilities of families. Family caregivers are being asked to shoulder greater burdens for longer periods of time. In addition to more complex care, conflicting demands of jobs and family, increasing economic pressure, and the physical and emotional demands of long-term caregiving can result in major health impacts on caregivers.20
Over all, caregivers who experience the greatest emotional stress tend to be female. They are at risk for high levels of stress, frustration, anxiety, exhaustion and anger, depression, increased use of alcohol or other substances, reduced immune response, poor physical health and more chronic conditions, neglecting their own care and have higher mortality rates compared to noncaregivers.21
In addition, most caregivers are ill-prepared for their role and provide care with little or no support;22 yet more than one-third of caregivers continue to provide intense care to others while suffering from poor health themselves.23 An influential factor in a caregiver's decision to place an impaired relative in a long-term care facility is the family caregiver's own physical health.24
Long term caregiving has significant financial consequences for caregivers, particularly for women. Informal caregivers personally lose about $659,139 over a lifetime: $25,494 in Social Security benefits; $67,202 in pension benefits; and $566,443 in forgone wages.
Caregivers face the loss of income of the care recipient, loss of their own income if they reduce their work hours or leave their jobs, loss of employer-based medical benefits, shrinking of savings to pay caregiving costs, and a threat to their retirement income due to fewer contributions to pensions and other retirement vehicles.25
Caregiving also has a substantial impact on business. Lost productivity due to informal caregiving costs businesses $17.1 billion annually.26 Absenteeism, replacing employees who quit in order to provide care and other caregiving-related activities also have serious financial consequences to employers. For instance
Working caregivers often suffer many work-related difficulties due to their "second careers" as caregivers. Sixty-seven percent of family caregivers report conflicts between caregiving and employment, resulting in reduced work hours or unpaid leave.28
The importance of eldercare is now recognized by a growing number of employers, with movement toward more flexible work schedules, "cafeteria style" benefits, in-house support groups, and education, information, and referrals provided through employee assistance programs.
Policy changes have also supported family caregivers. Companies with 50 or more employees must comply with the Family and Medical Leave Act (FMLA), which allows for up to 12 weeks of unpaid leave to care for a seriously ill parent, spouse or child, while protecting job security. Smaller firms can use the FMLA guidelines to provide support for individual employees. Paid Family Leave (PFL) provides workers with a maximum of six weeks of partial pay each year while taking time off from work to care for a seriously ill parent, child, spouse or registered domestic partner, and has been instituted in several states, including California. Policy changes that could also benefit family caregivers include paid sick leave that can be used by employees for themselves or to care for family members and expanding FMLA beyond immediate family members to include care for siblings, in-laws and grandparents.29
It is important to make legal preparations in the event a parent becomes cognitively impaired. Typical concerns include who will manage the confused person's money, who will make important health care decisions and how to plan for long-term care.
An attorney can help plan for the financial aspects of long-term care needs, assist with surrogate decision-making tools such as the durable power of attorney (DPA) and a durable power of attorney for health care (DPAHC), and provide guidance in obtaining a conservatorship should the care recipient lack the capacity to make decisions. A conservatorship provides the legal authority to manage a person's finances, estate, personal affairs, assets and medical care.30
Because of the multi-faceted role that family and informal caregivers play, they need a range of support services to remain healthy, improve their caregiving skills and remain in their caregiving role. Support services include information, assistance, counseling, respite, home modifications or assistive devices, caregiver and family counseling, and support groups. While many services are available through local government agencies, service organizations, or faith-based organizations, employers' programs also can mitigate the impact that caregiving can have on workers.
Services that improve caregiver depression, anxiety and anger benefit both the caregiver and the care recipient.31 Evidence also shows that caregiver support delays or prevents nursing home placement; people with moderate dementia have been able to defer placement by nearly 1.5 years when their family members receive caregiver services, including counseling, information and ongoing support.32
Family caregiving is the backbone of the United States' long term care system as well as the core of what sustains frail elders and adults with disabilities, yet caregivers often make major sacrifices to help loved ones remain in their homes. A federal investment in family caregiver support is needed now more than ever.
A national agenda is needed that:
With the dramatic aging of the population, we will be relying even more on families to provide care for their aging parents, relatives and friends for months and years at a time. Yet, the enormous pressures and risks of family caregiving—burnout, compromised health, depression and depletion of financial resources—are a reality of daily life for millions of American families and pose great strain on family caregivers, many of whom are struggling to balance work and family responsibilities.
Families need information and their own support services to preserve their critical role as caregivers, but frequently they do not know where to turn for help. When they do seek assistance, many community agencies cannot provide adequate supports due to funding constraints and out-dated policies. The federal government can help by taking steps to ensure that all family caregivers have access to caregiver assistance and to practical, high quality, and affordable home and community-based services. These are tough economic times, but supporting family caregivers is one of the most cost-effective long-term care investments we can make. As long as caregivers are able to provide care, they are often able to delay costly nursing home placements and reduce reliance on programs like Medicaid.
Family Caregiver Alliance, "2009 National Policy Statement."
Family Caregiver Alliance, Family Caregiving and Long-Term Care: A Crucial Issue for America's Families, Policy Brief. San Francisco, CA, June 2004.
Family Caregiver Alliance, Caregiver Assessment: Principles, Guidelines and Strategies for Change, Volume 1. San Francisco, CA, April 2006.
Family Caregiver Alliance, Caregiving and Retirement Planning: What Happens to Family Caregivers Who Leave the Work Force, Policy Brief, December 2003.
Family Caregiver Alliance, "Caring in Rural Communities," Update, Winter 2006.
AARP Public Policy Institute, Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update, November 2008.
American Journal of Nursing, "State of the Science: Professional Partners Supporting Family Caregivers." 108, N0. 9 Supplement. New York, NY: Lippincolt Willliams & Wilkins, September 2008.
Easter Seals and National Alliance for Caregiving, Caregiving in Rural America, October 2007.
HarrisInteractive and GlaxoSmithKline, "Improving the Patient-Physician Relationship," 2003.
National Alliance for Caregiving and AARP, Caregiving in the U.S., April 2004.
1 National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: Washington, DC: AARP Public Policy Institute, Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update. Washington, DC: 2008; Family Caregiver Alliance, Family Caregiving and Long-Term Care: A Crucial Issue for America’s Families, Policy Brief. San Francisco, CA: June 2004.
2 Family Caregiver Alliance, Family Caregiving and Long-Term Care: A Crucial Issue for America’s Families, Policy Brief. San Francisco, CA: June 2004.
3 Chronic Care in America, GlaxoSmithKline and HarrisInteractive, 2003.
4 Beyond 50.05: A Report to the Nation on Livable Communities, AARP, May 2005.
5 Family Caregiver Alliance Fact Sheet, Is This Dementia and What Does It Mean?, 2008; Fact Sheet, Caregiver’s Guide to Understanding Dementia Behaviors, 2008; National Alliance for Caregiving and AARP; Caregiving in the U.S.
6 Family Caregiver Alliance, Caring in Rural Communities; Easter Seals and the National Alliance for Caregiving, Caregiving in Rural America, October 2007.
7 National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: National Alliance for Caregiving, and Washington, DC: AARP, April 2004.
8 National Alliance for Caregiving and AARP; Caregiving in the U.S. Bethesda: National Alliance for Caregiving, and Washington, DC: AARP, 2004.
9 National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: National Alliance for Caregiving, and Washington, DC: AARP, 2004; Alecxih, L. M. B., S. Zeruld, and B. Olearczyl, Characteristics of Caregivers Based on the Survey of Income and Program Participation, Falls Church, VA: The Lewin Group, 2001.
10 AARP. Beyond 50.03: A Report to the Nation on Independent Living and Disability. Washington DC: AARP, 2003.
11 McCann, J.J., L.E. Hebert, L.A. Beckett, M.C. Morris, P.A. Scherr, and D.A. Evans. 2000. “Comparison of Informal Caregiving by Black and White Older Adults in a Community Population.” Journal of the American Geriatrics Society 48:1612-1617; Pinquart, M. and S. Sorenson. 2005. “Ethnic Differences in Stressors,” Resources, and Psychological Outcomes of Family Caregiving: A Meta-Analysis. The Gerontologist 45: 90-106.
12 Pinquart, M. and S. Sorenson. 2005. “Ethnic Differences in Stressors, Resources, and Psychological Outcomes of Family Caregiving: A Meta-Analysis,” The Gerontologist 45: 90-106.
13 Administration on Aging, NFCSP Complete Resource Guide, September 9, 2004
14 National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: National Alliance for Caregiving, and Washington, DC: AARP, 2004.
15 Family Caregiver Alliance, “Caregivers at Risk,” 2004/05.
16 Partnership for Solutions. “Chronic conditions: Making the case for ongoing care.” Baltimore: Johns Hopkins University, 2002.
17 Langa K.M., M. Chernew, M. Kabeto, A.R. Herzog, M.B. Ofstedal, R. Willis, R. Wallace, L. Mucha, W. Straus, AM. Fendrick. 2001. “National Estimates of the Quantity and Cost of Informal Caregiving for the Elderly with Dementia.” Journal of General Internal Medicine 16: 770-778.
18 National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: National Alliance for Caregiving, and Washington, DC: AARP, 2004.
19 National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: National Alliance for Caregiving, and Washington, DC: AARP, 2004.
20 Family Caregiver Alliance, “Caregiving in California.” Issue Paper #1, 2007.
21 Family Caregiver Alliance, Caregiving in California: Issue Paper #1, 2007; National Alliance for Caregiving and AARP. Caregiving in the U.S. Bethesda: National Alliance for Caregiving, and Washington, DC: AARP, 2004.
22 National Alliance for Caregiving & AARP. (2004). Caregiving in the U.S. Alzheimer’s Association & National Alliance for Caregiving. (2004); Families Care: Alzheimer’s Caregiving in the United States. Chicago, IL: Alzheimer’s Association and Bethesda, MD: National Alliance for Caregiving; Family Caregiver Alliance (2006). Caregiver Assessment: Principles, Guidelines and Strategies for Change. Report from a National Consensus Development Conference (Vol. I). San Francisco: Author.
23 Navaie-Waliser, M., Feldman, P.H., Gould, D.A., Levine, C.L., Kuerbis, A.N. & Donelan, K. (2002). “When the caregiver needs care: The plight of vulnerable caregivers.” American Journal of Public Health, 92(3), 409–413
24 Buhr, G.T., Kuchibhatla, M., & Clipp, E. (2006). “Caregivers’ reasons for nursing home placement: Cues for improving discussions with families prior to the transition.” The Gerontologist, 46(1): 52-61; Whitlatch, C.J., Feinberg, L.F., & Sebesta, D.S. (1997). “Depression and health in family caregivers.” Journal of Aging and Health, Vol.9 (2), 222-243; Whitlatch, C.J., Feinberg, L.F., & Stevens, E.J. (1999). “Predictors of institutionalization for persons with Alzheimer’s disease and the impact on family caregivers.” Journal of Mental Health and Aging, Vol. 5(3). 275-288; Lieberman, M.A. & Kramer, J.H. (1991). “Factors affecting decisions to institutionalize demented elderly.” The Gerontologist, 31, 371-374.
25 AARP Public Policy Institute, Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update. Washington, DC: AARP, November 2008.
26 Family Caregiver Alliance, 2009 National Policy Statement.
27 Metropolitan Life Insurance Company and National Alliance for Caregiving. (1997, June). The Metlife study of employer costs for working caregivers. Connecticut: Metropolitan Life Insurance Company.
28 Family Caregiver Alliance, 2009 National Policy Statement.
29 Family Caregiver Alliance, Fact Sheet: Work and Eldercare Fact Sheet, 1999; Family Caregiver Alliance, 2009 National Policy Statement.
30 Family Caregiver Alliance, Fact Sheet: Work and Eldercare, 1999.
31 Schulz, R., O’Brien, A., Czaja, S., Ory, M., Norris, R., Martire, L.M., Belle, S.H., Burgio, L., Gitlin, L., Coon, D., Burns, R., Gallagher-Thompson, D., and Stevens, A. 2002. “Dementia Caregiver Intervention Research: In Search of Clinical Significance.” The Gerontologist 42:589-602; Bookwala, J., Zdaniuk, B., Burton, L., Lind, B., Jackson, S., Schulz, R. 2004. “Concurrent and Long-Term Predictors of Older Adults’ Use of Community-Based Long-Term Care Services: The Caregiver Health Effects Study.” Journal of Aging and Health 16: 88-115; Zarit, S.H., Stephens, M.A.P., Townsend, A. and Greene, R. 1998. “Stress Reduction for Family Caregivers: Effects of Adult Day Care Use.” Journal of Gerontology: Social Sciences 53B:S267-S277.
32 AARP Public Policy Institute, Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update. Washington, DC: AARP, November 2008; Mittelman, M. S., Haley, W., & Roth, D. 2006. “Improving Caregiver Well-being Delays Nursing Home Placement of Patients with Alzheimer’s Disease.” Neurology, 67, 1592-1599.
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.
FCA’s National Center on Caregiving offers information on current social, public policy and caregiving issues, provides assistance in the development of public and private programs for caregivers, publishes timely reports, newsletters and fact sheets, and assists caregivers nationwide in locating resources in their communities.
For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, head injury, Parkinson’s and other debilitating health conditions that strike adults.
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