Assessment of Caregiver Burden in Families of Persons With Multiple Sclerosis

Marijean Buhse, PhD RN NP-C


J Neurosci Nurs. 2008;40(1):25-31. 

In This Article


A caregiver has been defined as an unpaid person who helps with the physical care or coping with the disease (Hileman, Lackey, & Hassanien, 1992). It is most often a family member, such as a partner or parent. More than 50 million people provide care for a chronically ill, disabled, or aged family member or friend during any given year (U.S. Department of Health and Human Services, 1999). The estimated economic value of the services provided by unpaid family caregivers is approximately $306 billion a year. By comparison, half that amount (approximately $158 billion) is actually spent on home care and nursing home services combined (Arno, 2006).

Caregivers provide the majority of care for people who need help with activities of daily living, such as bathing, eating, and taking medications, as well as managing household finances (Pandya, 2005). Sixty percent of caregivers are women, and 65% of care recipients are also women. The typical caregiver is 48 years old and cares for a woman in her family. Most caregivers live in close proximity to the person for whom they provide care, and 25% of caregivers report living in the same household as the care recipient. However, more than half of care recipients live in their own homes, and about 25% live alone. Seventy-nine percent of care recipients are 50 years of age or older and require care because of old age and diseases such as cancer, diabetes, heart disease, and Alzheimer disease (National Family Caregivers Association, n.d.; Pandya).

Caregiving takes an economic toll on families. Women who are family caregivers are 2.5 times more likely than noncaregivers to live in poverty and are 5 times more likely to receive Supplemental Security Income (Donato & Wakabayashi, 2005). Families with one disabled member have median incomes 15% lower than families without a disabled member (Wang, 2000). In every state, the poverty rate is higher among families of people with a disability (Arno, 2006). Out-of-pocket medical expenses for a family with a disabled member who needs help with activities of daily living are more than 2.5% greater than for a family without a disabled member (Altman, Cooper, & Cunningham, 1999). In 2000, the average family caregiver who worked lost $109 per day in wages and health benefits because of the need to provide full-time care at home (Stucki & Mulvey, 2000).

Economic hardship is not the only concern for caregivers. Elderly caregivers are often coping with their own chronic illnesses. The added stress related to caregiving has been reported to increase their mortality rate by 63% compared to their noncaregiving peers (Schulz & Beach, 1999). The stress of giving care to family members with dementia has been shown to affect the caregiver's immune system. The effect can last for up to 3 years after the care ends, putting the caregiver at an increased risk of developing a chronic illness, such as depression or heart disease (Kiecolt-Glaser et al., 1987). Family caregivers who provide care for 36 or more hours per week are more likely than noncaregivers to experience symptoms of depression or anxiety. For spouses, the rate is 6 times higher; for those caring for a parent, the rate is 2 times higher than for noncaregivers (Cannuscio et al., 2002). Lastly, family caregivers experiencing extreme stress from caregiving have been shown to age prematurely. The high level of stress can decrease a family caregiver's life expectancy by 10 years (Arno, 2006).

Caregiving affects the workplace because family caregivers comprise 13% of the workforce (Wagner & Neal, 2001). Of family caregivers who care for someone over the age of 18 years, 59% either work or have worked while providing care, and more than half have had to make some adjustments to their work life, from reporting late to work to giving up work entirely (Pandya, 2005). To accommodate caregiving responsibilities, more than 50% of male and female children of aging parents make changes at work, modify their schedules, and alter work-related travel. American businesses lose as much as $34 billion each year because of employees' need to care for loved ones 50 years of age and older (Metlife Mature Market Institute and National Alliance for Caregiving, 2006). As the population ages, caring for elderly family members will become the norm for many families, increasing caregiver burden.


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