Although the caregiving literature is vast, much of it is based on cross-sectional analyses of relatively small opportunity samples. Confounding effects such as the caregiver’s level of education and health status have often not been controlled for in the study’s design or statistical analysis.
Even large, longitudinal, or case–control studies are subject to biases. For example, differences in illness rates between caregivers and noncaregivers may not be the result of the caregiving experience, but may instead reflect differences that existed prior to assuming the caregiving role. One example may be socioeconomic status; individuals of low socioeconomic status are more likely to take on the caregiving role, and low socioeconomic status is a risk factor for poor health. Higher rates of illness in spouse caregivers may be the result of assortative mating (people tend to choose spouses who are similar to themselves} or shared health habits (such as diet and exercise) and life circumstances (such as access to medical care). As a result of these factors, older spouses tend to develop illnesses and disabilities at about the same time; one partner may have health problems that require a caregiver, but chances are the other partner also has health problems, although they may be less severe.
Transitions into and out of caregiving
Prospective studies that link declines in caregiver health to increasing care demands provide compelling evidence of the health effects of caregiving.14,27
A few studies followed samples of noncaregivers until they became caregivers and then compared them with those who didn’t take on this role.16,22,28,29
Both Burton and colleagues and Hirst demonstrated that moving into a demanding caregiving role—providing assistance with basic ADLs for 20 hours or more per week—resulted in increased depression and psychological distress, impaired self-care, and poorer self-reported health.16,22
A few studies have examined the effects of making the transition out of the caregiving role because the patient improves, enters an institution, or dies. Improved patient functioning is associated with reductions in caregiver distress.30
The death of the care recipient has been found to reduce caregiver depression, and caregivers are often able to return to normal levels of functioning within a year.31
In the short term, the effects of transition to a nursing home are less positive, with caregivers continuing to exhibit the same level of psychiatric morbidity after placement.31
Progression of negative effects
Conceptual models of caregiving and health suggest that health effects should unfold in a cascading fashion. Caregivers first experience distress and depression, which are followed by physiologic changes and impaired health habits that ultimately lead to illness and possibly to death. Although researchers have demonstrated the predicted effects for isolated components of this model, they have not shown how illness progresses sequentially or how one condition, such as depression, leads to changes in health habits or physiology.
Many studies show that caregiving causes psychological distress, but virtually none have demonstrated that stress results in physiologic dysregubrion, such as increased cortisol secretion or changes in immune function, within individual caregivers over time. Similarly, researchers have not yet demonstrated that such physiologic responses are directly linked to illness outcomes in caregivers.
Demonstrating sequential causal relationships among variables considered critical in the path from caregiver stress to illess is certainly challenging. Nevertheless, these efforts should be of high priority.
The literature clearly shows that the intensity of caregiving, whether it is measured by the type or the quantity of assistance provided, is associated with the magnitude of health effects. Emerging evidence suggests that other factors, such as the level of patient suffering, may contribute just as much to a health decline in the caregiver. It is important to disentangle the effects of helping from those of other aspects of the caregiving context, such as patient suffering.
We also need a better understanding of the different types of caregiving experiences and their effects on health. Providing help that fails to enhance the quality of the patients life may lead to frustration, resignation, and negative health effects for the caregiver. But it is likely that providing help that significantly addresses the needs and desires of a patient is uplifting to the caregiver and contributes to positive health effects. Because research on the positive aspects of caregiving is relatively new, we know little about how these good experiences moderate the stress response and affect health.
The caregiver needs to be fully integrated into the planning and delivery of health care to the nation’s older adults. Researchers in nursing and social work need to develop and test interventions designed to maintain and enhance the health of caregivers. (See “Behavioral and Psychosocial Interventions for Family Caregivers” on page 47 for cautions about study design.)
- Caregiving often results in chronic stress, which comprises caregiver’s physical psychological health.
- Depression is one of the common negative effects of caregiving.
- Caring for a person with dementia is particularly challenging, causing more severe negative health effects than other types of caregiving.
- Caregiving can also be beneficial, enabling caregivers to feel good about themselves, learn new skills, and strengthen family relationships.