Caregiver Burden

Caregiver burden is a term used to describe the physical, mental, social, and financial impact of caring for someone who is ill or who has functional impairments. Although the term can be applied to all care-givers (paid and unpaid), in most circumstances the term is applied to unpaid caregivers (called informal caregivers) who are usually family members of the ill or impaired care receiver.

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, care-givers of this sort are usually not the focus of research on caregiver burden.

Burden as a Predictor or as an Outcome

Caregiver burden is considered to be an outcome of caregiving, in itself, and it is also used to predict other outcomes. For example, as an outcome of caregiving, some studies have shown that increasing levels of necessary assistance (in their daily activities) for care receivers predict higher levels of caregiver burden. Caring for someone with lower cognitive functioning and caring for someone with increased behavioral problems (for example, wandering and aggression in patients with Alzheimer’s disease) has also predicted higher levels of burden. Contextual variables, such as caregivers’ gender, age, and employment status, have been tested, and although findings are sometimes mixed for these variables, there is evidence that female caregivers report more burden, older caregivers report more burden, and employed caregivers report more burden.

In addition, in studies where burden is considered an outcome, certain mediator variables have been identified. For example, higher levels of quality social support from family and friends seem to buffer the negative impact of some of the above mentioned predictor variables on caregivers’ levels of burden, as does getting a break from their role of caregiving. Using in-home respite services and having the care receiver attend adult day care services, for example, both seem to buffer caregivers’ levels of reported burden.

As stated previously, caregiver burden is not always considered to be an outcome to be studied. It is also often used to predict other caregiver outcomes. Higher levels of caregiver burden predict a higher likelihood of placing the care receiver in an adult day care facility, and also predict higher likelihood of placing the care receiver in a residential care facility, such as a nursing home. Higher levels of burden have also been linked to higher levels of physical and mental health outcomes in caregivers; for example, higher burden has been found to predict more depressive symptoms and poorer self-rated health in caregivers.

Objective versus Subjective Caregiver Burden

Research on caregiver burden has differentiated between two main types of burden: objective burden and subjective burden. Objective burden refers to the physical, psychological, social, and financial impact on the caregiver caused by tangible caregiver-related disruptions to his or her life. Examples of such disruptions may include the increased amount of time the caregiver takes from his or her own life to care for the care receiver, or it may be the amount of money spent giving care. The accumulation of objective stressors, such as lack of time and lack of money, produces objective burden on a caregiver. Subjective burden, on the other hand, refers to the physical, psychological, social, and financial impact on the caregiver caused by feelings and appraisals of the caregiving role.

Some caregivers may perceive the objective tasks of caregiving as being rewarding, while others may perceive them to be quite stressful and negative. The accumulation of subjective stressors, such as negative feelings toward their role or feelings of guilt about not meeting the needs of their care receiver, produces subjective burden on the caregiver.

Although objective and subjective burdens are related to each other, many studies have found evidence that the hours spent caregiving or progression of memory loss in the care receiver (both measures of objective burden) are not related to how burdened the caregivers perceive themselves to be (subjective burden). For example, two caregivers may both be caring for a person with dementia full time (40 hours a week), and both may be exposed to similar behavioral problems and may need to perform similar kinds of care for their relative, yet one caregiver may perceive himself as very burdened by the caregiving role, while the other perceives little burden. It is thought that there is much variability in how caregivers process the stress faced from their caregiving role, and how they cope with it, which leads to such variability in the outcome of burden.

How Is Caregiver Burden Measured?

Caregiver burden is most commonly measured by asking caregivers to fill out or respond to a multi-item scale. Several analyses have been performed to assess the number and quality of measures of burden. One such study conducted in 2004 identified 16 different measures of burden. The most widely cited measure is the Zarit Burden Interview (sometimes also called the Burden Scale, the Burden Index, or the Caregiver Burden Index). The scale, developed in 1980, was intended for use with caregivers of persons with dementia, but it has also been used with success in other contexts. Although it originally had 29 items, the 22-item shorter version is more commonly used. This scale lists symptoms or feelings related to caregiver burden, and it asks caregivers to respond with how often they feel that way, using never (0), rarely (1), sometimes (2), quite frequently (3), or nearly always (4). Sample items include the following: “Do you feel that because of the time you spend with your relative you don’t have enough time for yourself?” “Do you feel your social life has suffered because you are caring for your relative?” and “Do you wish you could leave the care of your relative to someone else?” Caregivers’ scores are added up for all 22 items, thus the scale ranges from 0 to 88, with higher scores indicating that the caregiver feels more burden.

The second most commonly cited measure of burden is the Caregiver Strain Index, or CSI. It was first published in 1983, and it was intended for caregivers of patients who were recently hospitalized for hip fracture or heart disease. This scale has also been used with success in other contexts. The CSI is a 13-item scale with questions requiring a yes (1), or no (0) response. The responses are added for a total range of 0 to 13, with higher scores indicating higher levels of burden. In the CSI, caregivers are given a list of things that they may find difficult, and they are asked if the items apply to their caregiving experience. Sample items include the following: “There have been work adjustments,” “There have been family adjustments,” and “Some behavior is upsetting.” In addition, there has been a modified version of the scale (called the Modified Caregiver Strain Index, or MCSI) which asks similar versions of the same 13 items, but asks caregivers to respond no (0), yes, sometimes (1), and yes, on a regular basis (2), instead of using the original dichotomous response choice (no vs. yes). In the modified version of the scale, the responses are also summed, such that higher scores still indicate higher levels of burden.

Both the Zarit Burden Interview and the Caregiver Strain Index have demonstrated acceptable psychometric properties, with both having satisfactory levels of reliability and validity across multiple studies. Reviews of the other measures of caregiver burden have found that in general, the other scales are also acceptable, and no one scale can be deemed superior over all others. The main disadvantage of having so many measures of caregiver burden is the difficulty of making comparisons across studies that use differing measures of the construct.

Is Caregiver Burden a Distinct Concept?

There is some debate over whether caregiver burden and caregiver well-being are “opposite sides of the same coin,” or whether they should be treated as distinct concepts and measured separately. Those that do not favor separating the constructs suggest that care-giver burden is merely a dimension of well-being, with both constructs measured by assessing physical, mental, social, and financial problems (or lack of problems, as is the case when measuring well-being). These researchers propose that studying well-being in caregivers instead of studying burden offers researchers the ability to compare caregiver and non-caregiver populations. Many other researchers, however, interpret caregiver burden as a concept that is distinct from caregiver well-being (although they recognize that the two are often related to each other). Researchers from this orientation state that although caregivers high on burden are often low on well-being, there are also caregivers who have high levels of burden, but who also have adequate or high levels of well-being. Thus, it is possible for the two constructs to operate independently.

Interventions to Reduce Caregiver Burden

Reducing the negative effects of stress for caregivers has often been the target of caregiver interventions. The outcome variables of interest in these studies may differ, but the studies usually aim to increase positive affect, quality of life, or health and well-being; or to reduce stress, depression, or caregiver burden. Thus, reducing burden, itself, is not always the main or only goal of caregiver interventions, but burden is often an important component included in evaluations of care-giver programs. Caregivers who are the most at risk for adverse outcomes, and who are thereby most in need of intervention, tend to be older females with little income or education who provide high levels of care, have low levels of social support, and feel they have no choice in taking on their role as a caregiver.

Interventions that aim to reduce burden in caregivers often include one or more of the following components. They may seek to reduce the needs or the behavior problems in the care receiver, or they may introduce respite care for the care receiver, thereby reducing the objective stress on the caregiver. They also may seek to target the caregivers themselves. Some interventions aim to increase caregivers’ knowledge of resources and appropriate care techniques (for example, by providing education about the availability of local services to education on how to bathe an uncooperative care receiver). Other caregiver-targeted interventions aim to provide individual (or group) support or therapy.

While providing caregivers emotional support (listening, giving advice, and reassuring them) in an individual or group counseling session may be helpful, the most beneficial aspects of counseling seem to be when there is a focus on increasing problem-solving strategies and support-seeking behaviors for the caregiver.

In general, individual treatment seems to be more beneficial for caregivers than group sessions; however, group sessions have the advantage of being less expensive (often free) for caregivers. It is important to note that referrals to psychiatrists are recommended for any caregivers displaying evidence of psychopathology, such as significant depressive symptoms.

In general, interventions that include more than one component, for example, targeting the behaviors of the care receiver as well as providing education and support for the caregiver, have more positive results. In addition, it is not surprising that higher-intensity interventions have more of an impact on caregivers than low-intensity programs. Overall, however, findings on the effectiveness of all types of caregiver interventions in reducing caregiver burden have been mixed. Some researchers speculate that this variability in the interventions’ effectiveness stems from the fact that caregivers’ situations, needs, and appraisals of stress vary significantly themselves. A one-intervention-fits-all approach does not seem promising in reducing care-giver burden. Although they may be more difficult to evaluate, interventions that place an emphasis on the individual needs of the caregivers may have the most effect in ultimately reducing their objective and subjective burden. It is suggested that an evaluation of caregivers’ needs should include an assessment of their safety and that of their care receivers as well as an assessment of the care receivers’ physical health, depression, and anxiety. Appropriate ways to intervene for the individual can then be dictated by their needs in these areas.

References:

  1. Chappell, N. L., & Reid, R. C. (2002). Burden and well-being among caregivers: Examining the distinction. The Gerontologist, 42(6), 772-780.
  2. Dinkin, J. J., & Anderson-Hanley, C. (1998). Dementia caregiver burden: A review of the literature and guidelines for assessment and intervention. Neurology, 51(1), S53-S60.
  3. Schulz, R., Martire, L. M., & Klinger, J. N. (2005). Evidence-based caregiver interventions in geriatric psychiatry. Psychiatric Clinics of North America, 28, 1007-1038.
  4. Stull, D. E., Kosloski, K., & Kercher, K. (1994). Caregiver burden and generic well-being: Opposite sides of the same coin? The Gerontologist, 34(1), 88-94.
  5. Visser-Meily, J. M. A., Post, M. W. M., Riphagen, I. I., & Lindeman, E. (2004). Measures used to assess burden among caregivers of stroke patients: A review. Clinical Rehabilitation, 18, 601-623.
  6. Visser-Meily, A., van Heugten, C., Post, M., Schepers, V., & Lindeman, E. (2004). Intervention studies for caregivers of stroke survivors: A critical review. Patient Education and Counseling, 56, 257-267.
  7. Wolff, J. L., & Kasper, J. D. (2006). Caregivers of frail elders: Updating a national profile. The Gerontologist, 46(3), 344-356.

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