Caregiver Health A Population at Risk

Caregiver Health A Population at Risk

  • An estimated 44 million Americans age 18 and older provide unpaid assistance and support to older people and adults with disabilities who live in the community.
  • The value of this unpaid labor force is estimated to be at least $306 billion annually,
  • nearly double the combined costs of home health care ($43 billion) and nursing home care ($115 billion).

Evidence shows that most caregivers are ill-prepared for their role and provide care with little or no support, yet more than one-third of caregivers continue to provide intense care to others while suffering from poor health themselves. Studies have shown that 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. A substantial body of research shows that family members who provide care to individuals with chronic or disabling conditions are themselves at risk. Emotional, mental, and physical health problems arise from complex caregiving situations and the strains of caring for frail or disabled relatives. Today, medical advances, shorter hospital stays, limited discharge planning, and expansion of home care technology have placed increased costs as well as increased care responsibilities on families, who are being asked to shoulder greater care burdens for longer periods of time.12, 13 To make matters worse, caregivers are more likely to lack health insurance coverage due to time out of the workforce. These burdens and health risks can hinder the caregivers’ ability to provide care, lead to higher health care costs and affect the quality of life of both the caregiver and care receivers.

Impact of Care-giving on Caregiver Mental and Emotional Health

The psychological health of the family caregiver is negatively affected by providing care. Higher levels of stress, anxiety, depression and other mental health effects are common among family members who care for an older relative or friend.\r\n

Caregivers show higher levels of depression.

  • Studies consistently report higher levels of depressive symptoms and mental health problems among caregivers than among their noncaregiving peers.
  • Estimates show that between 40 to 70% of caregivers have clinically significant symptoms of depression, with approximately one quarter to one-half of these caregivers meeting the diagnostic criteria for major depression.
  • Both caregiver depression and perceived burden increase as the care receiver’s functional status declines. Thus, higher levels of clinical depression are attributed to people caring for individuals with dementia. Studies show that 30 to 40% of dementia caregivers suffer from depression and emotional stress.
  • Depression and anxiety disorders found in caregivers persist and can even worsen after the placement of the patient in a nursing home. Many caregivers who institutionalize their relative report depressive symptoms and anxiety to be as high as it was when care was in the home.
  • Depressed caregivers are more likely to have coexisting anxiety disorders, substance abuse or dependence, and chronic disease. Depression is also one of the most common conditions associated with suicide attempts.

Caregivers suffer from high levels of stress and frustration.

  • Caregivers have higher levels of stress than noncaregivers. They also describe feeling frustrated, angry, drained, guilty or helpless as a result of providing care.
  • Some 16% of caregivers feel emotionally strained and 26% say taking care of the care recipient is hard on them emotionally. An additional 13% of caregivers feel frustrated with the lack of progress made with the care recipient.
  • Care-giving can also result in feeling a loss of self-identity, lower levels of self-esteem, constant worry, or feelings of uncertainty. Caregivers have less self-acceptance and feel less effective and less in control of their lives than non-caregivers.
  • More than one-fifth (22%) of caregivers are exhausted when they go to bed at night, and many feel they cannot handle all their caregiving responsibilities.
  • Caregivers who experience chronic stress may be at greater risk for cognitive decline including a loss in short-term memory, attention, and verbal IQ.

Health Consequences for Women Caregivers

  • Research shows that female caregivers (who comprise about two-thirds of all unpaid caregivers) fare worse than their male counterparts, reporting higher levels of depressive and anxiety symptoms and lower levels of subjective well-being, life satisfaction, and physical health than male caregivers.
  • According to one study, there is a dramatic increase in the risk of mental health consequences among women who provide 36 or more hours per week of care to a spouse.
  • In a national survey on caregiver health, more than one in five (21%) women surveyed had mammograms less often.

Stressful caregiving situations may lead to harmful behaviors.

  • As a response to increased stress, caregivers are shown to have increased alcohol and other substance use. Several studies have shown that caregivers use prescription and psychotropic drugs more than noncaregivers.
  • Family caregivers are at greater risk for higher levels of hostility than noncaregivers.
  • Spousal caregivers who are at risk of clinical depression and are caring for a spouse with significant cognitive impairment and/or physical care needs are more likely to engage in harmful behavior toward their loved one.

Impact of Caregiving on Caregiver Physical Health

High rates of depressive symptoms and mental health problems among caregivers, compounded with the physical strain of caring for someone who cannot perform activities of daily living (ADLs), such as bathing, grooming, and other personal care activities, but many caregivers at serious risk for poor physical health outcomes. Indeed, the impact of providing care can lead to increased health care needs for the caregiver.

Caregivers are in worse health.

  • About one in ten (11%) caregivers report that caregiving has caused their physical health to get worse.
  • Caregivers have lower levels of subjective well-being and physical health than noncaregivers. In 2005, three-fifths of caregivers reported fair or poor health status, one or more chronic conditions, or a disability, compared with one-third of noncaregivers. Caregivers also reported chronic conditions (including heart attack/heart disease, cancer, diabetes, and arthritis) at nearly twice the rate of noncaregivers (45 vs. 24%).
  • Caregivers suffer from increased rates of physical ailments (including acid reflux, headaches, and pain/aching), increased tendencies to develop serious illness,  and have high levels of obesity and bodily pain.
  • Studies demonstrate that caregivers have diminished immune response, which leads to frequent infection and increased risk of cancers. For example, caregivers have a 23% higher level of stress hormones and a 15% lower level of antibody responses. Caregivers also suffer from slower wound healing.
  • The physical stress of caregiving can affect the physical health of the caregiver, especially when providing care for someone who cannot transfer him/herself out of bed, walk or bathe without assistance. Ten percent of primary caregivers report that they are physically strained.

Caregivers have an increased risk of heart disease.

  • Caregivers exhibit exaggerated cardiovascular responses to stressful conditions which put them at greater risk than noncaregivers for the development of cardiovascular syndromes such as high blood pressure or heart disease.
  • Women providing care to an ill/disabled spouse are more likely to report a personal history of high blood pressure, diabetes and higher levels of cholesterol.
  • Women who spend nine or more hours a week caring for an ill or disabled spouse increase their risk of heart disease two-fold.

Caregivers have lower levels of self-care.

  • Caregivers are less likely to engage in preventive health behaviors.
  • Spousal caregivers who provide 36 or more hours per week of care are slightly more likely to smoke and consume more saturated fat.
  • Compared to noncaregivers, women caregivers are twice as likely not to fill a prescription because of the cost (26% vs. 13%).
  • Nearly three quarters (72%) of caregivers reported that they had not gone to the doctor as often as they should, and more than half (55%) had missed doctors appointments.
  • Caregivers’ self-care suffers because they lack the time and energy to prepare proper meals or to exercise. About six in ten caregivers in a national survey reported that their eating (63%) and exercising (58%) habits are worse than before.
  • Caregivers in rural areas are at a greater disadvantage for having their own medical needs met due to difficulty getting to the hospital and doctor.

Caregivers pay the ultimate price for providing care—increased mortality.

  • Elderly spousal caregivers (aged 66-96) who experience caregiving-related stress have a 63% higher mortality rate than noncaregivers of the same age.
  • In 2006, hospitalization of an elderly spouse was found to be associated with an increased risk of caregiver death.

Increasing Positive Health Outcomes for Caregivers

A large and growing body of evidence reveals that providing care for a chronically sick person can have harmful physical, mental, and emotional consequences for the caregiver. As families struggle to care for others, their own health is put in danger. As a result, caregiver health is quickly becoming a public health issue that requires more focused attention from health professionals, policymakers and caregivers themselves to ensure the health and safety of those individuals dedicating their lives to the care of others. Increasing appropriate mental health services and medical care for family caregivers are important steps toward addressing caregiver health. Although caregiving can have a negative impact on caregivers’ health and well-being, research demonstrates its effects can be alleviated at least partially by:

  • An assessment of family caregiver needs that leads to a care plan with support services;
  • Caregiver education and support programs;
  • Respite to reduce caregiver burden;
  • Financial support to alleviate the economic stress of caregiving; and
  • Primary care interventions that address caregiver needs.

Improved recognition and treatment of physical and psychological symptoms among caregivers is a growing health concern and should be considered a public health priority. Keeping family caregivers healthy and able to provide care is key to maintaining our nation’s long-term care system and, with the aging of the population, this issue will only grow more important in the coming decades. Prepared by Family Caregiver Alliance in cooperation with California’s Caregiver Resource Center. Reviewed by Moira  Fordyce, MD, MB, ChB, Adjunct Clinical Professor, Stanford University School of Medicine, President, California Geriatrics Society, and a fellow of the American Geriatrics Society. Funded by the California Department of Mental Health. © 2006 Family Caregiver Alliance. All rights reserved. https://www.caregiver.org/caregiver-health 

Endnotes

1 National Alliance for Caregiving & AARP. (2004). Caregiving in the U.S. Washington, DC: Author.\r\n2 National Family Caregivers Association & Family Caregiver Alliance (2006). Prevalence, Hours and Economic Value of Family Caregiving, Updated State-by-State Analysis of 2004 National Estimates (by Peter S. Arno, PhD). Kensington, MD: NFCA & San Francisco, CA: FCA.\r\n3 Arno, P.S. (2006). Economic Value of Informal Caregiving: 2004. Presented at the Care Coordination & the Caregiver Forum, Department of Veterans Affairs, January 25-27, 2006.\r\n4 National Alliance for Caregiving & AARP. (2004). Caregiving in the U.S. Washington, DC: Author.\r\n5 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.\r\n6 Family Caregiver Alliance (2006). Caregiver Assessment: Principles, Guidelines and Strategies for Change. Report from a National Consensus Development Coference (Vol. I). San Francisco: Author.\r\n7 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.\r\n8 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.\r\n9 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.\r\n10 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.\r\n11 Lieberman, M.A. & Kramer, J.H. (1991). Factors affecting decisions to institutionalize demented elderly. The Gerontologist, 31, 371-374.\r\n12 Family Caregiver Alliance. (2006). Caregiver Assessment: Principles, Guidelines and Strategies for Change. Report from a National Consensus Development Conference (Vol. I). San Francisco: Author.\r\n13 Levine, C., (Ed.). (2004). Always On Call: When Illness Turns Families Into Caregivers. New York: United Hospital Fund.\r\n14 Ho, A., Collins, S., Davis, K. & Doty, M. (2005). A Look at Working-Age Caregivers Roles, Health Concerns, and Need for Support (Issue Brief). New York, NY: The Commonwealth Fund. \r\n15 Schulz, R.., O’Brien, A.T., Bookwals, J., & Fleissner, K. (1995). Psychiatric and physical morbidity effects of dementia caregiving: Prevalence, correlates, and causes. The Gerontologist, 35: 771-791.\r\n16 Marks, N., Lambert, J.D. & Choi, H. (2002). Transitions to caregiving, gender, and psychological well-being: A prospective U.S. national study. Journal of Marriage and Family, 64, 657–667.\r\n17 Pinquart, M. & Sorensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18(2), 250-267.\r\n18 Teri, L., Logsdon, R., Uomoto, J., McCurry, S.M. (1997). Behavioral treatment of depression in dementia patients: A controlled clinical trial. Journal of Gerontology B: Psychological Science and Social Science, 52, 159-166.\r\n19 Schulz, R., Newsom, J., Mittelmark, M., Burton, L., Hirsch, C. & Jackson, S. (1997). Health effects of caregiving: The Caregiver Health Effects Study: An ancillary study of  The Cardiovascular Health Study. Annals of Behavioral Medicine, 19: 110-116.\r\n20 Zarit, S. (2006). Assessment of Family Caregivers: A Research Perspective. In Family Caregiver Alliance (Eds.), Caregiver Assessment: Voices and Views from the Field. Report from a National Consensus Development Conference (Vol. II) (pp. 12 – 37). San Francisco: Family Caregiver Alliance.\r\n21 Grunfeld, E. (2004). Family caregiver burden: Results from a longitudinal study of breast cancer patients and their principal caregivers. Canadian Medical Association Journal, 170(12): 1795-1801.\r\n22 Covinsky, K.E., Newcomer, R., Dane, C.K., Sands, L.P., Yaffe, K. (2003). Patient and caregiver characteristics associated with depression in caregivers of patients with dementia. Journal of General Internal Medicine, 18: 1006-14.\r\n23 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.\r\n24 Schulz, R., Belle, S., Czaja, S., McGinnis, K., Stevens, A. & Zhang, S. (2004). Long-term care placement of dementia patients and caregiver health and well-being. JAMA, 292 (8): 961-967.\r\n25 Spector, J. & Tampi, R. (2005). Caregiver depression. Annals of Long-Term Care: Clinical Care and Aging, 13(4): 34-40.\r\n26 Pinquart, M. & Sorensen, S. (2003) Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18(2), 250-267.\r\n27 Center on Aging Society. (2005). How Do Family Caregivers Fare? A Closer Look at Their Experiences. (Data Profile, Number 3). Washington, DC: Georgetown University.\r\n28 Ibid.\r\n29 Ibid.\r\n30 Ibid.\r\n31 Marks, N., Lambert, J.D. & Choi, H. (2002). Transitions to caregiving, gender, and psychological well-being: A prospective U.S. national study. Journal of Marriage and Family, 64, 657–667.\r\n32 Pinquart, M. & Sorensen, S. (2003) Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18(2), 250-267.\r\n33 Center on Aging Society. (2005). How Do Family Caregivers Fare? A Closer Look at Their Experiences. (Data Profile, Number 3). Washington, DC: Georgetown University.\r\n35 Vitaliano, P.P., Echeverria, D., Yi, J., Phillips, P.E.M, Young, H. & Siegler, I.C.. (2005). Psychophysiological mediators of caregiver stress and differential cognitive decline. Psychology and Aging, 20: 402-411.\r\n37 U.S. Department of Health and Human Services. (1998). Informal Caregiving: Compassion in Action. (Based on data from the National Survey of Families and Households [NSFH]), Washington, DC: Author.\r\n38 National Alliance for Caregiving & Evercare. (2006). Evercare® Study of Caregivers in Decline: A Close-up Look at the Health Risks of Caring for a Loved One. Bethesda, MD: National Alliance for Caregiving and Minnetonka, MN: Evercare.\r\n39 Marks, N., Lambert, J.D., & Choi, H. (2002). Transitions to caregiving, gender, and psychological well-being: A prospective U.S. national study. Journal of Marriage and Family, 64, 657–667.\r\n40 Beach, S.R., Schulz, R., Williamson, G.M., Miller, L.S., Weiner, M.F. & Lance, C.E. (2005). Risk factors for potentially harmful informal caregiver behavior. Journal of the American Geriatric Society, 53: 255-61.\r\n41 National Alliance for Caregiving & AARP. (2004). Caregiving in the U.S. Washington, DC: Author.\r\n42 Johnson, R.W. & Wiener, J.M. (2006). A Profile of Older Americans and Their Caregivers (Occasional Paper Number 8), Washington, DC: The Urban Institute.\r\n43 Miller, B. & Cafasso, L. (1992). Gender differences in caregiving: fact or artifact? The Gerontologist, 32: 498-507.\r\n44 Yee, J.L. & Schulz, R. (2000). Gender differences in psychiatric morbidity among family caregivers: a review and analysis. The Gerontologist, 40: 147-164.\r\n45 Pinquart, M. & Sorensen, S. (2006). Gender differences in caregiver stressors, social resources, and health: An updated meta-analysis. Journal of Gerontology: Psychological Sciences, 61B (1): 33-45.\r\n46 Cannuscio, C., Jones, C., Kawachi, I. Colditz, G., Berkman, L. & Rimm, E. (2002). Reverberations of family illness: A longitudinal assessment of informal caregiving and mental health status in the nurses’ health study. American Journal of Public Health, 92(8), 1305-1311.\r\n47 National Alliance for Caregiving & Evercare. (2006). Evercare® Study of Caregivers in Decline: A Close-up Look at the Health Risks of Caring for a Loved One. Bethesda, MD: National Alliance for Caregiving and Minnetonka, MN: Evercare.\r\n48 Center on Aging Society. (2005). How Do Family Caregivers Fare? A Closer Look at Their Experiences. (Data Profile, Number 3). Washington, DC:.Georgetown University.\r\n49 Pinquart, M. & Sorensen, S. (2003). Differences between caregivers and noncaregivers in psyhcological health and physical health: A meta-analysis. Psychology and Aging, 18(2), 250-267.\r\n50 Schulz, R., O’Brien, A.T., Bookwals, J. & Fleissner, K. (1995). Psychiatric and physical morbidity effects of dementia caregiving: Prevalance, correlates, and causes. The Gerontologist, 35: 771-791.\r\n51 Ho, A., Collins, S., Davis, K. & Doty, M. (2005). A Look at Working-Age Caregivers Roles, Health Concerns, and Need for Support (Issue Brief). New York, NY: The Commonwealth Fund.\r\n52 Ibid.\r\n53 National Alliance for Caregiving & Evercare. (2006). Evercare® Study of Caregivers in Decline: A Close-up Look at the Health Risks of Caring for a Loved One. Bethesda, MD: National Alliance for Caregiving and Minnetonka, MN: Evercare.\r\n54 Shaw, W.S., Patterson, T.L., Semple, S.J., Ho, S., Irwin, M.R., Hauger, R.L. & Grant, I.  (1997). Longitudinal analysis of multiple indicators of health decline among spousal caregivers. Annals of Behavioral Medicine, 19: 101-109.\r\n55 Barrow, S. & Harrison, R. (2005). Unsung heroes who put their lives at risk? Informal caring, health, and neighborhood attachment. Journal of Public Health, 27(3): 292-297.\r\n56 Kiecolt-Glaser, J.K., Dura, J.R. & Speicher, C.E., (1991). Spousal caregivers of dementia victims: Longitudinal changes in immunity and health. Psychosomatic Medicine, 53(4):345-362.\r\n57 Kiecolt-Glaser, J., Glaser, R., Gravenstein, S., Malarkey, W.B. & Sheridan, J.,(1996). Chronic stress alters the immune response to influenza virus vaccine in older adults. Proceedings of the National Academy of Sciences of the United States of America, 93: 3043-3047.\r\n58 Glaser, R. & Kiecolt-Glaser, J.K. (1997). Chronic stress modulates the virus-specific immune response to latent herpes simplex virus Type 1. Annals of Behavioral Medicine, 19:  78-82.\r\n59 Vitaliano, P., Zhang, J. & Scanlan, J. (2003). Is caregiving hazardous to one’s physical health? A meta-analysis. Psychological Bulletin, 129(6): 946-972.\r\n60 Kiecolt-Glaser, J.K., Marucha, P.T., Malarkey, W.B., Mercado, A.M. & Glaser, R.  (1996) Slowing of wound healing by psychological stress. Lancet, 346(8984): 1194-1196.\r\n61 Center on Aging Society. (2005). How Do Family Caregivers Fare? A Closer Look at Their Experiences. (Data Profile, Number 3). Washington, DC: Georgetown University.\r\n62 King, A.C., Oka, R.K., Young, D.R. (1994). Ambulatory blood pressure and heart rate responses to the stress of work and caregiving in older women. Journals of Gerontology Series A: Biological Sciences and Medical Sciences, 49: 239-245.\r\n63 Shaw, W.S., Patterson, T.L., Ziegler, M.G., Dimsdale, J.E., Semple, S.J. & Grant, I. (1999). Accelerated risk of hypertensive blood pressure recordings among Alzheimer’s caregivers. Journal of Psychosomatic Research, 46: 215-227.\r\n64 Lee, S.L., Colditz, G.A., Berkman, L.F., & Kawachi, I. (2003). Caregiving and risk of coronary heart disease in U.S. women: A prospective study. American Journal of Preventive Medicine, 24(2), 113–119.\r\n65 Ibid.\r\n66 Schulz, R., Newsom, J., Mittelmark, M., Burton, L., Hirsch, C. & Jackson, S. (1997). Health effects of caregiving: The Caregiver Health Effects Study: an ancillary study of The Cardiovascular Health Study. Annals of Behavioral Medicine, 19: 110-116.\r\n67 Lee, S.L., Colditz, G.A., Berkman, L.F. & Kawachi, I. (2003). Caregiving and risk of coronary heart disease in U.S. women: A prospective study. American Journal of Preventive Medicine, 24(2), 113–119.\r\n68 The Commonwealth Fund. (1999). Informal Caregiving (Fact Sheet). New York: Author.\r\n69 National Alliance for Caregiving & Evercare. (2006). Evercare® Study of Caregivers in Decline: A Close-up Look at the Health Risks of Caring for a Loved One. Bethesda, MD: National Alliance for Caregiving and Minnetonka, MN: Evercare.\r\n70 Ibid.\r\n71 Tanner Sanford, J., Johnson, A.D., & Townsend-Rocchiccioli, J. (2005). The Health Status of Rural Caregivers. Journal of Gerontological Nursing,31(4), 25-31.\r\n72 Schulz, R. & Beach, S. (1999). 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San Francisco: Author.\r\n78 Gwyther, L.P., Ballard, E.L. & Hinman-Smith, E.A.(1990). Overcoming Barriers to Appropriate Service Use: Effective Individualized Strategies for Alzheimer’s Care. Durham, N.C.: Center for the Study of Aging and Human Development.\r\n79 Guberman, N., Keefe, J., Fancey, P., Nahmiash, D. & Barylak, L. (2001). Assessment Tools Serving the Needs of Caregivers: A Document to Better Understand the Importance of Assessing Caregivers’ Needs. Montreal, Canada: School of Social Work, University of Quebec at Montreal.\r\n80 Cooke, D., McNally, L., Mulligan, K., Harrison, M., & Newman, P. (2001). Psychosocial interventions for caregivers of people with dementia: A systematic review. Aging & Mental Health, 5(2): 120-135.\r\n81 Gallagher-Thompson, D., Lovett, S., Rose, J., McKibben, C., Coon, D., Futterman, A., & Thompson, L.W. (2000). Impact of psycho-educational interventions on distressed caregivers. Journal of Clinical Geropsychology, 6(2): 91-110.\r\n82 Family Caregiver Alliance. (2004). California Caregiver Resource Centers 2004 Satisfaction Survey. San Francisco, CA: Author.\r\n83 Lyons, K. & Zarit, S. (1999). Formal and informal support: The great divide. International Journal of Geriatric Psychiatry, 14, 183-196.\r\n84 Zarit, S., Gaugler, J. & Jarrott, S. (1999). Useful services for families: Research findings and directions. International Journal of Geriatric Psychiatry, 14: 165-181.\r\n85 Zarit, S., Stephens, M., Townsend, A. & Greene, R. (1998). Stress reduction for family caregivers: Effects of adult day care use. Journal of Gerontology: Social Sciences, 53B: S267-S277.\r\n86 The Lewin Group. (2002). The national family caregiver support program resource guide. Falls Church, VA: Author.\r\n87 Kaye, L.W., Turner, W., Butler, S.S., Downey, R. & Cotton, A. (2003). Early intervention screening for family caregivers of older relatives in primary care practices. 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