ReviewA review of programs to alleviate the burden of informal caregivers of dependent persons
Introduction
On January 1st, 2007, Spain passed its Law on Personal Autonomy and Care for Dependents. This marks the first time that Spain has specifically dealt with the subject of dependents in a universal and subjective way. However, psychologists and the advocates of psychology complain that the law does not take into account the role played by their discipline in caring for this group and for their dependents. A contradiction therefore exists if we consider the data in the scientific literature regarding the negative effects on caregivers when caring for dependent persons.
The various studies on informal care indicate that caregivers bear a great burden (Carretero et al., 2007, Carretero et al., 2008, Garcés et al., 2009). It often happens that the given care exceeds the physical and mental capacity of the informal caregiver, building up a chronic situation of stress known as the caregiver burden (Zarit, 2002).
The direct and indirect effects of this burden are negative for all those involved and create social, political, and health problems that will persist unless strategic actions are taken to alleviate it. Firstly, the research shows that caregivers themselves suffer from mental and physical health problems, such as depression, anxiety, psychosomatic and immunological disorders, cardiovascular problems, etc. (Yee and Schulz, 2000, Lee et al., 2003).
Moreover, the burden and emotional distress felt by caregivers may have serious consequences for the person being cared for, especially breakdowns in care, bringing about the institutionalization of the dependent person and even harsh treatment and abuse of the dependent person (Mockus Parks and Novielli, 2000).
The consequences of the care burden for the Administration in the short and long term are financial pressure on the social protection systems. On the one hand, the caregivers’ own health problems resulting from the care burden may also convert them into consumers of the healthcare system, thus adding to the pressure of the dependents’ need for healthcare (Havens, 1999). On the other hand, when the informal sector reaches burden stage, the demand for long-term care moves to the public and private institutional sector. All of this creates a political, health, social, and economic problem if we consider the current lack of sustainability of the social protection systems (Garcés et al., 2003).
Therefore, in order to avoid and resolve the negative consequences of the caregiver burden for both dependents and caregivers, solutions must be adopted to prevent and lighten the emotional distress felt by caregivers.
Pearlin's Stress Process Model (Pearlin et al., 1989, Pearlin et al., 1990), one of the main models explaining the caregiver burden, suggests that formal social support is one of the main methods to alleviate the distress associated with the caregiver burden. Research has especially focused on studying and testing the effectiveness of two types of intervention to reduce caregiver stress—respite services and psycho-educational and psycho-social intervention. The former include interventions with the aim to offer new resources to relieve the caregiver from daily care activities, and the latter include programs devised to improve or increase the caregiver's skills in caring for or meeting the demands of their dependent family members (Zarit, 1990).
Below, we review the main characteristics and empirical results of this type of intervention to alleviate the caregiver burden in order to inform policy-makers, researchers, and professionals of all the possible alternatives to promote the maximum well-being and quality of life for dependents and their caregivers.
Section snippets
Respite services
The research on interventions to reduce the caregiver burden has focused above all on the programs that use formal services to allow the dependent person to remain in the community, based on the available evidence that both the families and members of informal networks caring for dependent persons and the dependents themselves prefer to remain in their homes and in their community by receiving long-term care (Havens, 1999) and that remaining at home has been linked to greater longevity and
Psycho-social programs to relieve the burden of informal caregivers
Another important type of intervention that has been seen to be effective to alleviate the caregiver burden, in addition to respite programs, are psycho-social or psycho-educational programs (Zarit, 1990). This type of intervention is designed in a general way to improve or increase the caregiver's skills for dealing with care situations. The general objectives are to reduce the burden, stress, and distress felt by caregivers and, on the other hand, to improve the quality of care received by
Conclusions
After this extensive review of the programs used in research to relieve the caregiver burden, we can conclude that the two types of program are very useful in helping caregivers to cope with the stress of the caregiving situation. However, there are a number of limitations which mean that the role of formal social support in relation to the care burden is not yet clear, so further research is needed.
Some studies have suggested that the best solution is to combine the two types of program,
Conflict of interest statement
None.
Acknowledgements
The authors acknowledge the Ministry of Science and Innovation (SEJ2006-04171; SEJ2006-14093) and the Consellerías de Sanitat y de Bienestar Social of the Generalitat Valenciana (Spain) for the funding provided for this project.
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