How Do Family Caregivers Fare?
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The majority of primary caregivers feeling stressed are women
The majority -- 64 percent -- of all primary family caregivers are women.2 Roughly four out of five primary family caregiver who report that caregiving is stressful are women3, and roughly three-quarters of primary caregivers who report feeling "very strained" physically, emotionally, or financially as a result of providing care are female (See Figure 1).
Caregiving often changes daily life
Being a primary caregiver is time-consuming. Nearly one in five primary caregivers -- 19 percent -- report that their relative or friend requires constant attention.4 Caregiving often usurps the time available to spend with other family members or friends, and limits the time available to participate in other social activities, hobbies, community activities, regular exercise, or vacations. Nearly a third -- 31 percent -- of caregivers report having less free time or a limited social life due to caregiving (See Figure 2).
Providing care to a family member with long-term care needs often necessitates the transfer of personal information about the care recipient or the care provided, or the acceptance of "strangers" such as formal care providers into their home, resulting in a lack of privacy. Some 18 percent of caregivers feel that their privacy as been invaded (see Figure 2).
Some caregivers feel overwhelmed
Family caregivers often become caregivers with little or no preparation, support, or understanding about providing long-term care. The experience can be overwhelming. Over one-fifth -- 22 percent -- of caregivers are exhausted when they go to bed at night, and many feel that they cannot handle all of their caregiving responsibilities (see Figure 3). Some 13 percent of caregivers feel frustrated with the lack of progress made with the care recipient.
Emotional strain is more common than physical strain among primary caregivers
The physical stress of caregiving, especially in relation to providing care for someone who is bedridden or wheelchair bound, can affect the physical health of the caregiver. One-tenth of primary caregivers report that they are physically strained (See Figure 4). Similarly, about one in ten caregivers -- 11 percent -- report that caregiving has caused their physical health to get worse.5 A decline in the physical capacity of caregivers affects their ability to continue providing care and increases the risk of their own frailty later in life.
The emotional strain of caregiving is somewhat more prevalent. Some 16 percent of caregivers feel emotionally strained (See Figure 4) and 26 percent say taking care of the care recipient is hard on them emotionally.6 Caregivers often report feeling frustrated, angry, drained, guilty, or helpless as a result of providing care. Caregiving can also result in feeling a loss of self identity, lower levels of self esteem, depression, con-stant worry, or feelings of uncertainty.
Caregivers generally cope well with their responsibilities
The majority of primary caregivers do not report feeling stressed. Although, many do engage in various activities to help them cope (see Table 1). Over one-third of caregivers turn to prayer or meditation. Nearly two out of five caregivers -- 38 percent -- report that they talk with family or friends when stressed. Relatively few caregivers report engaging in drinking or smoking explicitly to help them cope with their caregiving responsibilities.
Caregivers are somewhat wealthier than non-caregivers
Although Medicare, Medicaid and pri-vate insurance represent the majority of long-term care expenses, much of the financial burden associated with long-term care weighs heavily on the pockets of care recipients and their family. The majority of caregivers -- 60 percent, however, do not feel that caregiving causes any financial hardship.7 One in ten caregivers reports that caregiving causes a fair amount of financial difficulties. Most primary caregivers, however, are not low-income and tend to have more wealth, on average, than non-caregivers (see Table 2). Low-income caregivers are more likely to experience financial burden as a result of providing long-term care to an older family member or friend than caregivers with higher incomes.
Caregiving can affect work, income and savings
Caregiving can interfere with work, causing the caregiver to take time off from work without pay, cut back on the number of hours worked per week, retire early, or leave the workforce entirely; all of which can affect a caregiver's income and financial resources. Some 17 percent of caregivers worked fewer hours, 16 percent have taken time off without pay, and 8 percent quit their jobs to provide care.8 In the long run, there could be considerable financial consequences to caregivers who reduce their hours or retire early as a result of their caregiving responsibilities, especially lower income caregivers.
Chronic conditions are somewhat common among caregivers
Although the majority of caregivers are in good physical health, it is not uncommon for caregivers to also have chronic health conditions (see Table 3). Some of these conditions could interfere with the availability and ability of caregivers. For example, almost half -- 46 percent -- of caregivers suffer from arthritis, a chronic condition that can potentially cause severe physical limitations.
Caregiving can also be a rewarding experience
Although caregiving is a taxing experience, it also has positive and rewarding side-effects. For example, almost half -- 47 percent -- of caregivers strongly agree that they appreciate life more as a result of their caregiving experience.9 A similar proportion -- 48 percent -- report that caregiving has made them feel good about themselves. Other studies have suggested that caregiving has lead caregivers to feel useful or proud, or experience personal growth or an enhanced relationship with the care recipient and other family members.10.
Conclusion
The stress associated with providing care can be detrimental to the health and well-being of both the caregiver and the care recipient putting the care recipient at risk today and putting the caregiver at risk when they are older and frailer. While caregivers tend to cope well with the stressors of providing care, easy and affordable access to information, education, and training about long-term care as well as technology, support groups, counseling, respite care and financial assistance are beneficial to the well-being of both the caregiver and the care recipient.
Center on an Aging Society
Health Policy Institute - Georgetown University
2233 Wisconsin Avenue, NW, Suite 525
Washington, DC 20007
(202) 687-9840 - (202) 687-3110 (fax)
info@aging-society.org
Last Modified: 3 June 2005
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