Informal caregivers are persons from within the circle of family members (in more than 80% of the cases), friends or neighbors who take responsibility for the care of dependent persons who live in their area, and who do not receive payment for this work. Because these persons are usually women, we will use the feminine gender to refer to them in this editorial.
The conditions under which this care is provided are often less than ideal, and in attempts to analyze the consequences of being the principal care provider for a dependent person, one of the key concepts is burden of care. This term was first used in the early 1960s to study the effect on the family of keeping psychiatric patients in the community. Within the area of informal care, the term has been widely used since the 1980s to refer to the impact of caring for a person diagnosed with dementia.
Burden of care has both objective and subjective components. The former refer directly to the tasks the principal caregiver must perform, and particularly to the time devoted to care, the physical burden involved, and exposure to stressful situations arising from certain symptoms or behaviors in the patient. Accordingly, the word «demands» is used in its widest sense to mean those demands the caregiver is exposed to in the course of caring for a dependent person.
The subjective components are the way in which the caregiver perceives caring tasks, and specifically the emotional response to the experience of caring for a relative. Different authors have supported the relevance of this concept, and have emphasized that the important factor is not so much the number of situations in which the caregiver is exposed to as the degree to which these situations are judged to be negative. When emotional arousal is intense, very frequent, or prolonged, the caregiver´s health, well-being and behavior can be affected. However, other authors have questioned the concept of burden of care as a useful variable for measuring the effects on principal caregivers of caring for a disabled patient, because of the lack of a clear conceptual model that distinguishes between objective and subjective burden.1 A frequent alternative has been to evaluate psychological well-being, a central component of health-related quality of life (HRQL).2 The findings of some studies uphold the conceptual distinction between burden of care and quality of life, and suggest that the latter may improve even in the presence of caregiver burden. In addition, research on caregiver health should be complemented, as noted in the article by Moral Serrano et al, with measures of quality of life or related characteristics.3 Moreover, the correlation between measures of HRQL and caregiver burden is, for some processes, only weak or moderate.4
Greater dependence on the part of the patient increases the level of caregiver strain, which in turn generates conflicting feelings of rage, grief, isolation and resentment. These emotions affect the caregiver's health and well-being, and eventually her HRQL, to the point that caregiving has been related with greater mortality.5 In accordance with the conclusions reached by Moral Serrano et al, recognizing psychological distress in the person responsible for caring for the patient offers help to the caregiver in that resources are mobilized that can relieve, in part, the decrease in her quality of life. This in turn offers help for the patient, who will receive better care if the caregiver is not subjected to distress, and for the patient´s health care team, who can thus better understand how much support they can count on from the caregiver to ensure continuity of care and treatment.
