Caregiving in the US 2004: Downloads
About this Report
The purpose of this study was to determine how many caregivers there are in the U.S., who they are, what they do as caregivers, and how caregiving affects their lives. We also wanted to learn about the people who benefit from the care they provide.
We estimate there are 44.4 million caregivers age 18 and older in the U.S. (21% of the adult U.S. population) who provide unpaid care to an adult family member or friend who is also age 18 or older. These caregivers are present in an estimated 22.9 million households (21% of U.S. households).
Most caregivers in our study say they experience little physical strain, emotional stress, or financial hardship as a result of being a caregiver. Nonetheless, caregivers who provide the greatest number of hours of care and the most intense care are likely to say caregiving takes a toll on them physically, emotionally, and financially. These caregivers often feel they had to assume responsibility for caring for another person. Although this group represents 10-31% of all caregivers, they are the group most at risk for experiencing negative consequences from this role. With the existing shortage of health care workers in the U.S. today, these caregivers represent the backbone of the long-term care system.
This study is based on a national survey of 6,139 adults from which 1,247 caregivers were identified. The interviews included 200 African American, 200 Hispanic and 200 Asian-American caregivers who were obtained through oversampling using additional targeted and surname samples for Hispanic and Asian-American caregivers. Most interviews were conducted in English over the telephone between September 5 and December 22, 2003. A Spanish version of the interview was initially offered to non-English speaking people of Hispanic descent.
For purposes of this study, caregivers were defined as people age 18 and over who help another person age 18 or older with at least one of thirteen tasks that caregivers commonly perform. These activities range from helping another manage finances, shop for groceries, or do housework (instrumental activities of daily living) or personal care such as to helping someone get in and out of a chair or bed, get dressed, bathe, use the toilet, or eat (activities of daily living). By using this definition of caregiving, the study focused on those caregivers who are actively engaged in providing specific types of care for adults of all ages.
To understand the range of experiences and impact on caregivers, a Level of Burden Index was used. Level of Burden is based on an index derived from the activities of daily living (ADLs), instrumental activities of daily living (IADLs) and the amount of time devoted to caregiving. Level 1 represents the least amount of responsibility and Level 5 the greatest amount of responsibility. This measure is important as Level of Burden, the feeling of having a choice in being a caregiver, and the caregiver’s reported health status have the biggest influence on whether or not a caregiver reports emotional stress, physical strain or financial hardship.
The majority of the sample was obtained by using a random digit dial technique. However, we found that the incidence of caregivers in the Hispanic and Asian ethnic sub-groups was so small that additional targeted and surname samples were used, as well as an existing representative panel, to achieve the desired sample size. Consequently, the findings from the ethnic oversample may not represent all Hispanic or Asian caregivers.
Caregivers from the three sub-ethnic groups, African-Americans, Hispanics and Asian-Americans, under-represent recent immigrants or first-generation caregivers who speak little or no English. It is also important to note that sub-ethnic group respondents may not have interpreted all questions identically due to their diverse cultural and linguistic backgrounds.