What Do Family Caregivers Do?
Of the 65.7 million U.S. caregivers, 3.9 million care for only child recipients, 48.9 million care for only adult recipients, and 12.9 million care for both child and adult recipients, according to the National Alliance for Caregiving. A 2009 report from the Alliance also shows that 16.8 million unpaid caregivers provide care to a child under the age of 18 with a special need. In 2008, 9.9 million family members, friends and neighbors provided unpaid care for a person with Alzheimer’s disease or other dementia (Alzheimer’s Association, 2009).
Family caregivers often provide care over several years. Two-thirds of family caregivers reported providing care for a year or more while 37 percent said they provided care for one to four years. Another 26 percent have been caregivers for more than four years (Opinion Research Corporation, 2005). Caregivers of children are also less likely than caregivers of adults to be caring for just one person (National Alliance for Caregiving, 2009).
Family caregivers operate as extensions of health care systems performing complex medical and therapeutic tasks and ensuring care recipient adherence to therapeutic regimens. They operate as home-based “care coordinators” and personal advocates for care recipients. As health care costs and utilization continue to rise, individuals facing physical, mental or behavioral challenges are increasingly dependent on the ability of family or other informal caregivers to operate competently as formal health care providers. Yet, despite their important function in our society, caregivers do not receive adequate training, preparation or ongoing support from health care systems.
Alzheimer’s Association (2009). Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia, 5, (3).
National Alliance for Caregiving (2009). Caregiving in the U.S. Retrieved November 2, 2010, from http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf
National Alliance for Caregiving (2009). Caregiving in the U.S.: Companion Report of those caring for Children with Special Needs. Retrieved November 2, 2010, from http://www.caregiving.org/data/Report_Caregivers_of_Children_11-12-09.pdf
Opinion Research Corporation (2005). Attitudes and Beliefs about Caregiving in the United States: Findings of a national opinion survey. Opinion Research Corporation.
Adult care recipients vary greatly in their caregiving needs, according to the National Alliance for Caregiving. Most of the care recipients age 18 to 49 are limited by a long-term physical condition (54 percent), an emotional or mental health problem (46 percent), a short-term physical condition (35 percent) or a behavioral issue (31 percent) (National Alliance for Caregiving, 2009). Caregivers of adults 50 and older report that the person they help needs care because of long-term physical conditions (76 percent), a short-term physical condition (36 percent) or emotional/mental health issues (25 percent) (National Alliance for Caregiving, 2009).
The amount of time spent caring increases substantially as cognitive impairment worsens. Among people 70 years of age and older, those with no dementia receive an average of 4.6 hours per week of care, while those with mild dementia receive 13.1 hours of care weekly. For those with severe dementia, hours of informal care received rises to 46.1 hours per week.
Care recipients with HIV/AIDS move in and out of their need for extensive care over a long period of time. Unfortunately, the disease itself, and those experiencing it, are often feared and mistreated by those whose care they depend upon as well as by certain aspects of society at large. In addition, treatment, especially medication, can be extremely costly. In one study of informal HIV/AIDS caregivers, the number of hours committed to caregiving was a mean of 20.68 hours/week with a median of 15 hours. A high number of instrumental activities of daily living (IADLs) were performed for each care receiver, and over half of the care recipients — 56.8 percent — received assistance with at least one activity of daily living (ADL) (Ukockis, 2007).
When the care recipient is an adult, caregiving often requires re-negotiation of roles in adult relationships, such as between two spouses or adult children and their parents, and impacts multiple relationships within a family system — for example, how siblings negotiate meeting parental needs. Caregivers routinely assist their adult care recipients with ADLs, including transfers and mobility within the home, getting dressed, bathing, toileting and feeding. Caregivers also assist with many IADLs, including transportation, housework, grocery shopping, preparing meals, managing finances, administering and supervising medications, and arranging and/or supervising paid services. The transition to institutional care is particularly difficult for spouses, almost half of whom visit the patient daily and continue to provide help with physical care during their visits (Schulz et al., 2004). Although the overwhelming majority of family caregivers provide appropriate care and a supportive environment for their older relatives, caregiving creates stresses that affect both caregivers and care recipients, and these stresses may trigger potentially harmful caregiver behaviors that place dependent elders at risk for abuse (APA, 2012).
Flor’s husband, Miguel, will soon be discharged from an inpatient facility where he is in a rehabilitation program for a traumatic brain injury he incurred several months ago in a car accident. She has participated in some of the medical and nursing activities recommended by the staff, and she has attended the family conference in which discharge plans were discussed.
The family had relied on Miguel’s income as Flor had stayed at home caring for their two young children. Now their bills are mounting, and Flor is angry that other members of her family haven’t helped watch her kids as they promised so she could meet with the social worker and fill out some more forms they gave her. She is confused by Miguel’s health problems and she doesn’t know if and when Miguel can go back to his job. Flor doesn’t understand what the rehabilitation team meant when they told her in the family conference that Miguel now “reads at an 8th grade level” and what this means for their future. The family is behind on the rent, and she now has problems sleeping as she worries if they need to find another place to live when Miguel comes home.
Flor feels overwhelmed and confused about how she can take care of the children and Miguel and she is anxious about what will be expected of her in the months to come. The psychologist at the rehab hospital asked her about her sleep problems and now they have scheduled a time to meet alone for her to talk about the strains she is feeling, but she has never met a psychologist before and she doesn't know what to expect.
Alzheimer’s Association and National Alliance for Caregiving (2004). Families Care: Alzheimer’s Caregiving in the United States. Chicago: Bethesda, Md.: Author.
American Psychological Association (2012). Elder Abuse & Neglect: In Search of Solutions. Retrieved from http://www.apa.org/pi/aging/resources/guides/elder-abuse.aspx
National Alliance for Caregiving (2009). Caregiving in the U.S. Retrieved Nov. 2, 2010, from http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf
National Alliance for Caregiving (2009). Caregiving in the U.S.: Companion Report of those caring for someone age 50+. Retrieved Nov. 2, 2010, from http://www.caregiving.org/data/FINALRegularExSum50plus.pdf.
Schulz, R., Belle, S.H., Czaja, S.J., McGinnis, K.A., Stevens, A., & Zhang, S. (2004). "Long-term care placement of dementia patients and caregiver health and well-being". Journal of the American Medical Association, 292 (8): 961–967.
Ukockis, G.L. (2007). Informal HIV/AIDS Caregivers: A Study of their decision-making experiences and perspectives (Doctoral dissertation, The Ohio State University). Retrieved from https://etd.ohiolink.edu/ap/10?0::NO:10:P10_ETD_SUBID:65612
There are a very wide range of conditions for which children require chronic, long-term care, including developmental disabilities, congenital problems like cerebral palsy, genetic diseases such as PKU, Fragile X Syndrome and Prader-Willi syndrome, chronic conditions such as diabetes and cancer, serious mental illness and autism spectrum disorders, and other problems including obesity, cardiac conditions and chronic pain, and accidental injuries causing spinal cord and brain injury. As caregivers for these children, parents, grandparents, siblings and other family caregivers provide routine health care in the home to meet their complex health and functional care needs. They engage in many support activities, including monitoring the child’s condition, ensuring others know how to deal with the child, advocacy, working with children to provide appropriate boundaries and reinforcements, preparing a special diet, and arranging/supervising outside services. In addition to navigating the medical world on behalf of their child, parents with sick children also have to help their child keep up with the academic demands of school and support the child in playing with other children as much as possible.
While new parents often assume that much of their time and effort will go towards helping their children grow and develop, when children are ill or disabled, the effort required of parents can be enormous. In our society, it is assumed that parents will take on whatever health care, home care and special programs their children require. Based on the hours they spend helping with activities of daily living and support services, caregivers of children with special needs have a more intensive caregiving experience than caregivers of adults (National Alliance of Caregiving, 2009). The stress these activities place on caregivers can become unmanageable at times. In fact, children with disabilities are overrepresented in public assistance programs and are at significantly greater risk for placement in an out-of-home care setting. Estimates suggest that one-third to one-half of youth in foster care placement have a disabling condition (Cederna, Palguta, Remondet Wall, & Koch, 2009).
Parents of sick children also may have many concomitant stressors, including other children who may have high care demands, a job, an ill or disabled parent or older loved one, personal illness or disability, financial concerns and marital problems. Family caregivers of children with special health care needs may experience the same adverse financial and medical effects of caregiving as seen in other scenarios across the lifespan, yet they are at the same time less likely than other caregivers to seek medical services (Altman, Cooper, & Cunningham, 1999).
Caring for a chronically ill child can strain marriages, reduce emotional availability for healthy children and compromise career goals and/or work attendance. Differences in opinion with spouses or ex-spouses or grandparents about the care of an ill or disabled child may cause or enlarge painful emotional rifts, and parents with ill children often feel very out of step with their peers whose children are healthy and may lose touch with many friends who had previously provided social support. These caregivers often experience feelings of chronic loss/grief for the “wished for” child and healthy developmental milestones such as high school prom and graduation. Isolation from friends and extended family, the loss of more “normal” relationships with their other children and a loss of professional aspirations/advancement and retirement dreams/plans are also common.
Altman, B. M., Cooper, P. F. and Cunningham, P. J. (1999), The Case of Disability in the Family: Impact on Health Care Utilization and Expenditures for Nondisabled Members. Milbank Quarterly, 77, 39–75.
Cederna, C. L., Palguta, M., Wall, J. R., & Koch, S. M. (2009). Youth with intellectual disabilities in foster care: Examining accompanying risks and service outcomes. In C. A. Marshall, E. Kendall, M. E. Banks and R. M. S. Gover (Eds.), Disability: Insights from across fields and around the world: Vol. 2. The context: environmental, social and cultural considerations (pp. 169-184). Westport, Conn.: Praeger Press.
National Alliance for Caregiving (2009). Caregiving in the U.S.: Companion Report of those caring for Children with Special Needs. Retrieved Nov. 2, 2010, from http://www.caregiving.org/data/Report_Caregivers_of_Children_11-12-09.pdf
Among older Americans, those who are veterans are more likely to have functional limitations in activities of daily living or instrumental activities of daily living, more likely to have a disability, and less likely to rate their general health status as good or better (Federal Interagency Forum on Aging-Related Statistics, 2010).
To assist with these impairments, many aging veterans rely on family caregivers. Forty percent of the Department of Veteran Affairs’ population is 65 and older. There are 9.7 million veterans age 65 and over in the United States. The number of men age 85 and over who are veterans was projected to have increased from 400,000 in the year 2000 to almost 1.2 million in 2010 (Federal Interagency Forum on Aging-Related Statistics, 2010).
The time commitment involved with caring for these veterans is not insignificant. A survey of World War II service members showed that 57 percent of caregivers provide care at least 10 hours per week. In addition, about three out of every four caregivers had quit or taken time off from either work or school to support a care recipient. Thirty-seven percent of these caregivers had unmet financial obligations, and 41 percent had new financial obligations (Christensen, Netzer, Hill, Davis, & Farr 2008). In a 2007 survey of Iraq and Afghanistan veterans, about 21 percent of active duty, 15 percent of reserve and 24 percent of retired/separated service members had friends or family who gave up a job to care for the returning soldier (President’s Commission on Care for America’s Returning Wounded Warriors, 2007).
More recently, many caregiving scenarios are associated with injuries, wounds and polytraumas such as brain injury, chronic pain, amputations or post-traumatic stress disorder (PTSD), incurred by service personnel in Operation Iraqi Freedom/Operation Enduring Freedom. As these Veterans return to our communities, families are essential in providing care, assistance and facilitating community re-integration. However, many families are unprepared to cope with the cognitive, behavioral and emotional changes, including agitation, emotional dysregulation and disinhibition, which often accompany brain injury and polytrauma.
In addition, several studies over the past 15 years have examined the impact of combat veterans’ chronic PTSD and or post-concussion related-impairments on their caregiver/spouses’ perceived sense of burden. In one study of veterans with spinal cord injury (SCI), 37 percent were receiving some informal, unpaid assistance with personal care. Primary informal caregivers were mostly women, had a mean age of 53, and provided an average of almost 12 hours of care a day. Nearly one- third of participants rated their primary caregiver as being only in fair or poor health, and one-fourth thought their caregiver was unlikely to be able to provide the same level of care five years from now. However, more than half reported that they did not have anyone else willing and able to provide assistance if their primary family caregiver became permanently unable to care for them (Robinson-Whelen & Rintala 2003).
According to a recently released study by the National Alliance for Caregiving, the conditions for which veterans need care differ greatly from the typical care recipient population. Large proportions of caregivers of veterans say the veteran has mental illness such as depression or anxiety (70 percent) or post traumatic stress disorder (PTSD) (60 percent), whereas nationally, mental or emotional health problems are reported by only 28 percent. Other top conditions reported by caregivers of veterans include traumatic brain injury (TBI), (29 percent), diabetes (28 percent) and paralysis or spinal cord injury (20 percent). Caregivers of veterans report a greater impact of caregiving on their lives than caregivers in general do including increased stress or anxiety (88 percent) or sleep deprivation (77 percent) (National Alliance for Caregiving, 2010).
Christensen, E., Netzer, P., Hill, C., Davis, S., & Farr, D. (2008). Economic Impact on Caregivers of the Seriously Wounded, Ill, and Injured: Preliminary Results, can publication (CRM D0019966.A2/Final).
Federal Interagency Forum on Aging-Related Statistics (2010). Older Americans 2010: Key Indicators of Well-Being. Washington, D.C.: U.S. Government Printing Office.
National Alliance for Caregiving (2010). Caregiving of Veterans – Serving on the Homefront. Retrieved Dec. 14, 2010, from http://www.caregiving.org/data/2010_Caregivers_of_Veterans_FULLREPORT_WEB_FINAL.pdf
President’s Commission on Care for America’s Returning Wounded Warriors (2007). Serve Support, Simplify: Report of the President’s Commission on Care for America’s Returning Wounded Warriors. Retrieved from http://www.gpo.gov/fdsys/pkg/CHRG-110hhrg39452/pdf/CHRG-110hhrg39452.pdf
Robinson-Whelen, S., & Rintala, D.H. (2003). Informal care providers for veterans with SCI: Who are they and how are they doing? Journal of Rehabilitation Research and Development, 40, 6, 511-516.
In addition to providing medical support, those providing care to someone with a mental disorder must also manage the stigma that is associated with the diagnosis of many mental disorders. Guilt is an emotion often reported by these caregivers, and there is a growing need for education that a mental disorder is not related to or caused by family or parent behavior.
Many caregivers of those with severe mental illness are parents who have been providing care for many years (Kaufman, et al, 2010). There is concern about who will assume responsibility for those who are receiving care when the caregiver is no longer able.
Twenty-five percent of caregivers of adults 50 and older report that the care recipient they help needs care because of emotional/mental health issues (National Alliance for Caregiving, 2009). These family caregivers frequently assumed supportive functions for an older adult with severe mental illness because of the scarcity of community based housing alternatives and mental health services (Lefley, 2009). Assuming this responsibility doesn't come without cost, however. It has been reported that spouses of patients with mental illness are at high risk for developing a depressive disorder (Wittmund, Wilms, Mory, & Angermeyer, 2002).
Patients with schizophrenia as well as their caregivers seem to be particularly affected. Those patients who live with informal caregivers are less likely to have been hospitalized during the previous year compared to those without informal caregivers, perhaps because of the community support that they receive (Tucker, Barker, & Gregoire, 1998). Yet, parents of outpatients with schizophrenia were significantly less satisfied with their overall quality of life compared to a randomly selected reference group (Foldemo, Gullberg, Ek, & Bogren, 2005).
Foldemo, A., Gullberg, M., Ek, A., & Bogren, L. (2005). Quality of life and burden in parents of outpatients with schizophrenia. Social Psychiatry and Psychiatric Epidemiology, 40, 133-138.
Kaufman AV, Scogin F, MacNeil G, Leeper J, Wimberly J.(2010) Helping aging parents of adult children with serious mental illness. Social Service Research 36, 445-459. Lefley, H. P. (2009). Family psychoeducation for serious mental illness. New York, Oxford University Press.
Tucker, C., Barker, A., & Gregoire, A. (1998). Living with schizophrenia: Caring for a person with a severe mental illness. Social Psychiatry and Psychiatric Epidemiology, 33(7), 305-309.
Wittmund, B.,Wilms, H. U., Mory, C., & Angermeyer, M. C. (2002). Depressive disorders in spouses of mentally ill patients. Social Psychiatry and Psychiatric Epidemiology, 37(4), 177-182.
End-of-life caregiving presents a number of particular challenges, including the necessity of making life and death decisions about matters such as whether to utilize life-sustaining treatments and hospice care, intense care demands, and witnessing pain and suffering in loved ones.
Decision making at the end-of-life can be particularly stressful for families. Family members may be asked whether to begin tube feeding, institute antibiotic therapy for infections, or to decline medical procedures that might extend duration of life when the quality of life is poor.
Presence of written advance directives or even a history of verbal discussions of end-of-life issues helps families cope with these issues. Family stress associated with the decision to withdraw treatment was high immediately following the death of the decedent and, while it decreased over time, remained high half a year later. Research shows, however, that family stress is highest in the absence of advance directives, Stress is lower when verbal advance directives guide the family, and lowest when written advance directives are in place (Tilden, Tolle, Nelson, & Fields, 2001).
Cultural diversity issues can become particularly prominent at the end-of-life as well, and may affect decision-making. For example, African American older adults are less likely than others to agree to withhold life-sustaining treatment even when quality of life is poor, and cultural values among many Asian groups discourage direct disclosure to dying patients and instead encourage decision-making by family members (Kwak & Haley, 2005).
Hospice utilization is consistently related to higher caregiver satisfaction with end-of-life care, and families report lower anxiety while caregiving and lower depression during bereavement when families receive hospice care (Miller, Mor, Gage, & Coppola, 2000). In addition, end-of-life caregivers who are taught problem solving and coping skills have improved caregiver quality of life, and reduced perceived burden (McMillan et al., 2005).
Kwak J, Haley WE.(2005). Current research findings on end-of-life decision making among racially or ethnically diverse groups. The Gerontologist, 45, 634–641.
McMillan, S. C., Small, B. J., Weitzner, M., Schonwetter, R., Tittle, M., Moody, L. and Haley, W. E. (2006), Impact of coping skills intervention with family caregivers of hospice patients with cancer. Cancer, 106: 214–222.
Miller, S. C., Mor, V., Gage, B., & Coppola, K. (2000). Hospice and its role in improving end-of- life care. Annual Review of Gerontology and Geriatrics, 20, 193–223.
Tilden, V.P . , Tolle, S.W . , Nelson, C.A . , & Fields, J . (2001). Family decision-making to withdraw life-sustaining treatments from hospitalized patients. Nursing Research, 50, 2 105-115.
Family caregivers often react with a mixture of relief and grief when a loved one dies. Death provides relief from the relentless strain of caregiving and alleviates the suffering of the care recipient, but also represents a significant loss to the family and to the primary caregiver (Schulz et al., 2003). Extensive caregiving may lead to a depletion of psychosocial resources, such as loss of roles or social supports, which might make caregivers even more vulnerable to the effects of bereavement. Some caregivers may need special help in dealing with grief, and in addressing social isolation that often occurs with highly stressful caregiving. Grief therapy appears to be as effective as psychotherapy for other conditions and is especially indicated when bereaved individuals show signs of complicated grief (Larson & Hoyt, 2009).
In the context of chronic illness and caregiving, for example, the family member may grieve losses before the actual time of death, which can be adaptive (Schulz, Newsom, Fleisner, DeCamp, & Nieboer, 1997). In fact, while caregiving can be a highly stressful prelude to bereavement, spouses who experienced the unexpected death of a spouse showed much greater increases in depression after the death than was found among spouses who had been caregivers, even under highly stressful circumstances (Burton, Haley, & Small, 2003).
In many cases, early psychosocial intervention for caregivers can improve caregiver depressive symptoms for years after counseling is completed, and even during the process of bereavement (Haley, Bergman, Roth, McVie, Gaugler, & Mittelman, 2008). Caregivers who gain knowledge, skills, and supports through psychological intervention may find these resources of value not only while providing active caregiving assistance but also as they face the challenges of coping with the death of a loved one. All of these experiences have the potential to affect the course of bereavement, and subsequent reengagement of the caregiver into a new life without caregiving responsibilities.
Burton, A. M., Haley, W. E., & Small, B. J. (2006). Bereavement after caregiving or unexpected death: Effects on elderly spouses. Aging & Mental Health, 10, 319-326.
Haley, W. E., Bergman, E. J., Roth, D. L., McVie, T., Gaugler, J. E., & Mittelman, M. S. (2008). Long-term effects of bereavement and caregiver intervention on dementia caregiver depressive symptoms. The Gerontologist, 48, 732-740.
Haley, W.E., LaMonde, L.A., Han, B., Burton, A.M., & Schonwetter, R. (2003). Predictors of depression and life satisfaction among spousal caregivers in hospice: Application of a stress process model. Journal of Palliative Medicine, 6, 215-224.
Larson, D. G., & Hoyt, W. T. (2007). What has become of grief counseling? An evaluation of the empirical foundations of the new pessimism. Professional Psychology: Research and Practice, 38, 347-355.
Pinquart, M. & Sörensen, S. (2005). Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: A meta-analysis. The Gerontologist, 45, 90-106.
Schulz, R., Mendelsohn, A. B., Haley, W. E., Mahoney, D., Allen, R. S., Zhang, S., Thompson, L., & Belle, S. H. (2003). End of life care and the effects of bereavement among family caregivers of persons with dementia. New England Journal of Medicine, 349, 1936-1942.
Schulz, R., Newsom, J.T., Fleissner, K., Decamp, A.R., & Nieboer, A.P. (1997). The effects of bereavement after family caregiving. Aging & Mental Health, 1, 269–282.
Practically and emotionally, being a caregiver who lives at a long distance from the care-recipient -- an increasingly common phenomenon in the U.S. -- is very difficult. Long-distance caregivers often feel that they don’t actually know what is happening to and with their loved one. They feel guilty and often feel they are without resources to find and evaluate local resources. They also have the burden of travel added to the other burdens of caregiving.
Among caregivers who do not live with their care recipients, 66% live with in 10 miles of one another, while 21% live at least 26 miles apart. Long-distance caregivers have the highest average annual expenses (around $8,700) for caregiving, compared with those resident caregivers ($5,900) or those who live nearby (but not with) the care recipient ($4,600) (Family Caregiver Alliance, 2012).
There are several valuable web resources devoted to helping and supporting the long-distance caregiver. They are:
- So Far Away: Twenty Questions and Answers About Long-Distance Caregiving
- Handbook for Long-Distance Caregivers
Family Caregiver Alliance (2012, November). Selected Caregiver Statistics (Fact Sheet). Retrieved from https://www.caregiver.org/selected-caregiver-statistics
In the Caregiving Facts Section
- Who Are Family Caregivers?
- What Do Family Caregivers Do?
- Cultural Diversity and Caregiving
- Mental and Physical Health Effects of Family Caregiving
- The Financial Costs of Family Caregiving
- Positive Aspects of Caregiving
- Family Caregivers' Needs Are Often Invisible
- Family Caregiver Well-Being is Important to Care Recipient Health