Caregiver Burden

Introduction

Caregiver burden refers to the physical, psychological and social consequences of taking care of a patient. Our aim is to raise the most important research issues on caregiver burden. After introducing the concept, we discuss the predictors, the impact of physical versus cognitive impairment and the gender differences, on burden. Most of the research has been made on demented individuals and elders but also on other chronic patients, as we will refer. Some widely used instruments are briefly presented and the future perspectives on this issue are pointed together with the concluding remarks.

The problem of caregiving has been studied extensively since the 1980s. This issue became of major importance namely because of the growing number of elders and the changing patterns of families and women, that traditionally assume the caregiver role (Biegel et al., 1991).

The conceptual framework to explain burden is the stress model. The physical overload of stress is derived from performing, or helping the patient perform, the activities of daily living (ADLs). The psychological and social costs of the caregiver role are much more difficult to measure but not less important in determining the stress of the caregiver.

According to Aneshensel et al. (1996) the stressors are the problematic conditions and difficult circumstances experienced by caregivers. The outcomes are the effects on individual health and emotional well being. There are also moderators that comprise social, personal and material resources that help modify or regulate the causal relationship between stressor and outcomes and the proliferation of stressors outside the boundaries of caregiving. The primary stressors are the objective conditions of caregiving (managing the patient's needs) and the subsequent sense of overload. The secondary stressors arise as a result of primary stressors and include strains in roles outside of caregiving (e.g. career) and intrapsychic strains.

Pearlin et al. (1990) view caregiver stress as a consequence of a process comprising a number of interrelated conditions, including the socio-economic characteristics and resources of caregivers and the primary and secondary stressors to which they are exposed. Primary stressors are hardships and problems anchored directly in caregiving. Secondary stressors are (1) the strains experienced in roles and activities outside of caregiving and (2) intrapsychic strains, involving the diminishment of self-concepts. Coping and social support can potentially intervene as buffers at multiple points along the stress process.

It is well established that caregiving is burdensome and is generally believed that caring for a demented individual present's the greatest challenge of all. We still know little about what is most distressing, the patient's decline, or providing daily care. The hypotheses that explain the evolution of caregiving are: (1) the wear-and-tear hypothesis suggesting that there will be a decrement in caregiver functioning as the illness progresses; (2) the adaptation hypothesis considering that caregivers will eventually adapt to the demands of the situation, stabilizing or even improving caregiving; (3) the trait hypothesis suggesting that caregivers maintain a constant level of functioning, depending on their resources of coping skills and social support; and (4) the glucocorticoid cascade hypothesis stating that the effect of chronic stressors could have persistent and severe consequences for immune function in elders (Schulz & Williamson, 1994).

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