Caregiver Burden

Description of the Caregivers and Care Receivers

A large national study of informal (unpaid) caregivers and care receivers in the United States (conducted in 1999) found that two fifths of caregivers fall between the ages of 45 and 64, one fifth are aged 65 to 74, and another one fifth are over the age of 75. Thus, a significant number of caregivers are older adults, themselves at risk for health problems due to advanced age. The same study found that two thirds of all caregivers are female, and most informal caregivers are immediate family members of the person needing care. Around 40% are spouses, another 40% are adult children, and the remaining 20% are categorized as “other” and can include friends, neighbors, siblings, grandchildren, or other relations. Although the number of hours spent providing care can vary from person to person depending on the level of dependency of the care receiver, the National Alliance for Caregiving reports that 17% of caregivers provide care for more than 40 hours per week. Therefore a significant number of caregivers are providing care full time for their relatives. In addition, many are providing care on their own, without the help of secondary caregivers. In 1989, about one third of caregivers reported being the only caregiver for their relative. Over the next ten years, however, this number rose dramatically. In 1999, around half of all caregivers reported providing care on their own, without the assistance of others.

Care receivers can vary significantly in their ages, their level of impairment, and their reasons for needing care. Most research on caregiver burden evaluates caregivers of people over the age of 65 who are living in the community (not in nursing homes or other care facilities), but of course people can need care at any age. Care receivers typically need assistance from caregivers in instrumental activities of daily living (IADL), which include assistance with activities such as shopping, transportation, and household chores. Sometimes care receivers are impaired even further, needing assistance in personal activities of daily living (PADL), which include needing help with bathing, eating, dressing, or other personal care needs.

Much of the research on caregiver burden studies caregivers of people with dementia, particularly those with Alzheimer's disease. For these caregivers, in addition to providing assistance with daily needs and activities, the caregiver also must manage the care receiver's behavioral symptoms, such as wandering, aggression, anxiety, and depression. Research on caregiver burden is not limited to caregivers of people with dementia, however, and significant attention has been paid to caregivers of people with Parkinson's disease, cancer, mental illness, intellectual disabilities, severe arthritis, or amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease) and to caregivers of people who have had a stroke or who have suffered from posttraumatic stress disorder or head injury. Depending on the disease or condition, care receivers may need extended periods of time for their care. Cancer, for example, may require shorter periods of care (months), but even individuals who develop Alzheimer's disease late in life may require 3 to 15 years of care. Caregiver burden is usually studied within the context of caregivers providing care for long periods of time, such as over months or years. Although caring for a person during an acute illness (perhaps caring for someone for days or a few weeks) may lead to feelings of caregiver burden, caregivers of this sort are usually not the focus of research on caregiver burden.

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