Mindy Kim-Miller, MD, PhD
The role of caregiving for a family member with Alzheimer’s disease is primarily a woman’s role. And this role has serious financial and medical repercussions. Of the almost 10 million Americans caring for a person with AD or other dementia, about 75% are women, 50% are the spouse of the care recipient (32% wives, 17% husbands), and 40% are the children, primarily daughters. Many women face the challenge of balancing the demands of caregiving with their employment. The average caregiver provides 16.6 hours of care per week, but nearly a quarter of the caregivers for people with AD and related dementias provide 40 hours a week or more of care. Because of caregiving responsibilities, 10% of employed family caregivers go from full-time to part-time jobs. Despite the time demands, the majority (57%) of family caregivers work full or part time, comprising 13% of the workforce.
Employment does not affect whether or not women start caregiving, however, women who do start are more likely to reduce employment hours or leave their employment in order to meet caregiving demands. For most women, assuming the caregiver role leads to a significant reduction in work hours and annual earnings, as well as a loss of benefits including health insurance. These losses are especially substantial among women ages 46 and older, women with less than a high school education, and women with competing roles (those who were married). Primarily due to caregiving responsibilities, women average 14 years out of the paid labor force. The time, energy, and stress of caring for an elder family member decrease a woman’s employment opportunities and earnings.
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Age, ethnicity, education, and marital status affect the likelihood of living in poverty as a caregiver. The financial impact of caregiving is more severe for women who take on the caregiver role in their early sixties or older. For example, among women caregivers 60-61 years of age, 15% lived in poverty, compared to 4% of the noncaregivers. In comparison, among women 58-59 years of age, the likelihood of poverty was only 6% for caregivers and 5% for noncaregivers. Non-white caregivers are more likely to live in poverty, 29% for non-white caregivers compared to 9% for white caregivers. Less education increases the risk of economic hardship. Women caregivers with less than a high school education are three times more likely to live in poverty and 10 times more likely to be SSI recipients compared to those with at least a high school education. A spouse can buffer some of the financial burden. Married women caregivers are four times less likely to live in poverty and almost half as likely to rely on SSI than unmarried women.
Caring for someone with AD is very stressful. Almost two-thirds of those with AD live with their caregivers, and AD patients require increasing levels of care, supervision and provision for their safety. Because the disease typically progresses slowly over 5 to 15 years, caregivers tend to spend a long time in the caregiving role. Sixty-five percent of AD caregivers perform physically demanding tasks such as bathing, feeding, helping the person to the toilet, and dealing with loss of bladder or bowel control. Depending on the source, up to 80% of dementia caregivers report very high levels of stress. Dementia family caregiver stress and burden are closely associated with care recipients’ behavioral problems such as aggressive behavior, the rate of cognitive decline, having a poor relationship with the care-recipient, and lack of social support.
Caregiving for family members with dementia has been consistently associated with higher levels of psychological distress, depression, anxiety, and anger compared to non-caregiving or non-dementia caregiving. Those who assist the care recipient with at least one or more ADL’s (eating, dressing, bathing, transferring, toileting, walking) have more symptoms of depression, anxiety, and illness-related symptoms that typically grow progressively worse over time. A reported 65% of dementia caregivers have depressive symptoms and up to a third of dementia caregivers have clinical depression. Twenty-four percent of family AD caregivers have significantly high levels of anxiety. Compared to noncaregivers, middle-aged and older women who care for a disabled spouse are six times more likely to suffer depressive symptoms and anxiety.
Chronically high levels of caregiver stress have serious health impacts. Studies have shown that chronic stress among dementia caregivers is associated with significantly higher stress hormone levels, depressed immune response, and elevated plasma levels of procoagulant factor D-dimer and inflammatory markers IL-6 and C-reactive protein, which are associated with cardiovascular disease and increased vulnerability to disease compared to noncaregivers. A weakened immune system increases the caregivers’ chances of developing chronic illness themselves. The chronic stress of caregiving doubles the risk of cardiovascular disease, increases the risk for hypertension, and slows wound healing. Almost half of AD caregivers report not getting enough sleep. Family caregivers report having more than twice the rate of chronic medical conditions as noncaregivers. Caregivers experiencing stress have a 63% higher risk of mortality than noncaregivers. Women are particularly vulnerable to the stresses of caregiving. They tend to compromise their own lives and personal health when they assume the caregiving role. They give up exercise, leisure activities, and personal time. Declining health and exhaustion add to the perceived level of caregiving stress and burden.
Caregiving for family members with dementia contributes to the deterioration of women’s economic, physical, and psychological health. Because of caregiving responsibilities, women caregivers often lose wages and benefits, hindering their efforts to prepare for their own retirement and aging. The serious health impacts associated with the chronic stress of caregiving can lead to further financial hardship and further amplify caregiver stress. Without attention and help for the caregiver, the spiral of economic hardship and health decline may be rapid, leading to a high risk of poverty for women caregivers.
- Alzheimer’s Association. Alzheimer’s Disease facts and figures. (2007). Accessible athttp://www.alz.org/national/documents/Report_2007FactsAndFigures.pdf
- Alzheimer’s Association and National Alliance for Caregiving. (2004). Families care: Caregiving in the United States. Accessible athttp://www.alz.org/national/documents/report_familiescare.pdf.
- Anzick MA, Weaver DA. ( 2001). Reducing Poverty among Elderly Women. ORES Working Paper Series No. 87, Social Security Administration, Office of Policy, Office of Research, Evaluation, and Statistics. Accessible athttp://www.ssa.gov/policy/docs/workingpapers/wp87.pdf.
- Arno PS. “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.
- Aschbacher KI et al. (2006). Dementia severity of the care receiver predicts procoagulant response in Alzheimer caregivers. Am J Geriatr Psychiatry. 14(8), 694-703.
- Bertrand RM, Fredman L, Saczynski J. (2006). Are all caregivers created equal? Stress in caregivers to adults with and without dementia. J Aging Health, 18(4), 534-51.
- Burton LC et al. (2003). Transitions in spousal caregiving. Gerontologist. 43(2):230-41.
- Burton WN et al. (2004). Caregiving for ill dependents and its association with employee health risks and productivity. J Occup Environ Med, 46(10):1048-56.
- Christakis NA, Allison PD. (2006). Mortality after the hospitalization of a spouse. N Engl J Med, 354(7), 719-30.
- Covinsky KE et al. (2003). Patient and caregiver characteristics associated with depression in caregivers of patients with dementia. J Gen Intern Med. 18(12):1006-14.
- Damjanovic AK et al (2007). Accelerated telomere erosion is associated with a declining immune function of caregivers of Alzheimer’s disease patients. J Immunol, 179(6):4249-54.
- Farran CJ, Loukissa D, Perraud S, Paun O. (2004). Alzheimer’s disease caregiving information and skills. Part II: Family caregiver issues and concerns. Res Nurs Health, 27, 40-51.
- Gallagher-Thompson D et al. (2006). Ethnicity, stress, and cortisol function in Hispanic and non-Hispanic white women: A preliminary study of family dementia caregivers and noncaregivers. Amer J Geriat Psych. 14(4), 334-42.
- Glaser R et al. (2000). Chronic stress modulates the immune response to a pneumococcal pneumonia vaccine. Psychosom Med. 2000;62(6):804-7.
- Kiecolt-Glaser JK et al. (2003). Chronic stress and age-related increases in the proinflammatory cytokine IL-6. Proc Natl Acad Sci U S A, 100(15):9090-5.
- Lee SL et al. (2003). Caregiving and risk of coronary heart disease in U.S. women: A prospective study. Amer J Prevent Med, 24(2), 113-9.
- Li J et al. (2007). Effects of chronic stress and interleukin-10 gene polymorphisms on antibody response to tetanus vaccine in family caregivers of patients with Alzheimer’s disease. Psychosom Med, 69(6), 551-9.
- Lu YF, Wykle M. (2007). Relationships between caregiver stress and self-care behaviors in response to symptoms. Clin Nurs Res, 16(1), 29-43.
Maatz, Lisa, President’s Commission to Strengthen Social Security. Older Women’s League, August 2001.
- Mahoney R, Regan C, Katona C, Livingston G. (2005). Anxiety and depression in family caregivers of people with Alzheimer disease: the LASER-AD study. Am J Geriatr Psychiatry, 13(9), 795-801.
- National Alliance for Caregiving and AARP. (2004). Caregiving in the U.S. Accessible atwww.caregiving.org/pubs/data.htm.
- National Family Caregivers Association. (2007). Who are Family Caregivers?: Caregiving statistics. Accessible at http://www.thefamilycaregiver.org/who/stats.cfm.
- Papastavrou E et al. (2007). Caring for a relative with dementia: family caregiver burden. J Adv Nurs, 58(5), 446-57.
- Pavalko EK, Artis JE. Women’s caregiving and paid work: causal relationships in late midlife. J Gerontol B Psychol Sci Soc Sci. 1997 Jul;52(4):S170-9.
- Pinquart M, Sörensen S. (2007). Correlates of physical health of informal caregivers: a meta-analysis. J Gerontol B Psychol Sci Sol Sci, 62(2), 126-37.
- Sink KM et al. (2006). Caregiver characteristics are associated with neuropsychiatric symptoms of dementia. J Am Geriatr Soc. 54(5):796-803.
- Schulz R, Beach SR. (1999). Caregiving as a risk factor for mortality: The caregiver health effect study. J Am Med Assoc, 282, 2215-9.
- Schulz R et al. (1997). Health effects of caregiving: The Caregiver Health Effects Study. Ann Behav Med, 19, 110-6.
- Schulz R, O’Brien AT, Bookwala J, Flessiner, K. (1995). Psychiatric and physical morbidity effects of dementia caregiving: Prevalence, correlates, and causes. Gerontologist, 35, 771-91.
- Tibaldi V et al. (2007). Clinical outcomes in elderly demented patients and caregiver’s stress: a 2-year follow-up study. Arch Gerontol Geriat. 44, 401-6.
- US Census Bureau. (2007). Income, Poverty, and Health Insurance Coverage in the United States, 2006. Accessible at http://www.census.gov/prod/2007pubs/p60-233.pdf.
Von Kanel R et al. (2006). Poor sleep is associated with higher plasma proinflammatory cytokine interleukin-6 and procoagulant marker fibrin D-dimer in older caregivers of people with Alzheimer’s disease. J Am Geriatr Soc. 54(3):431-7.
- Von Kanel R et al. (2005). Exaggerated plasma fibrin formation (D-dimer) in elderly Alzheimer caregivers as compared to noncaregiving controls. Gerontology. 51(1):7-13.
Wagner D, Neal M. (2001). Working Caregivers: Issues, Challenges and Opportunities for the Aging Network. National Family Caregivers Support Program, Program Development Issues Briefs, Administration on Aging, DHHS, 2002. Accessible athttp://www.aoa.gov/prof/aoaprog/caregiver/careprof/progguidance/background/program_issues/Fin-Neal-Wagner.pdf
- Wakabayashi C, Donato KM. (2006). Does caregiving increase poverty among women in later life? Evidence from the Health and Retirement survey. J Health Soc Behav. 47(3):258-74.
- Wakabayashi C, Donato KM. (2005). “The Consequences of Caregiving: Effects of Women’s Employment and Earnings.” Pop Res Policy Rev. 24, 467-88.
- Willette-Murphy K et al. (2006). Mental health and sleep of older wife caregivers for spouses with Alzheimer’s disease and related disorders. Issues Ment Health Nurs, 27(8):837-52.