The informal caregiver's burden of dependent people: Theory and empirical review
Introduction
Europe and the USA are currently facing demographic aging with equivalently high rates of senior citizens (AARP, 2006) and consequently, an increase in their dependent population, where dependency is understood as the state in which a person requires the help of others in order to perform daily activities (Council of Europe, 1998). The informal care is the assistance provided by persons from the intimate environment of the dependent person (family, neighbors and friends), who do not possess any training about care and who do not receive any economic retribution for this task. The in-home care provided by informal caregivers, especially by family members, is due to different reasons, the preference of the affected patients to remain in their residence, the high cost of formal resources, and the family-oriented character of Mediterranean society, the most frequent. As a result, the majority of the long-term care burden of dependent people falls upon the informal caregivers.
Thus, there are approximately 5% of European informal caregivers of dependent people and 15% of Spanish households which are dedicated to informal care (INE, 2004). The informal caregivers are usually family members, normally females (wife or daughter) between the ages of 45 and 65, without job employment or with part-time employment and a low educational and socio-economic level (Carretero et al., 2006, Carretero et al., 2007). Additionally, the care provision is usually characterized by being supplied in the residence of the dependent person, a house which is often shared, in a continual, intense, and daily way (which can represent over 40 h a week), and includes diverse types of services which range from personal care and the performance of domestic tasks to emotional support. Generally, this assistance is assumed by a single caregiver; a responsibility which frequently lasts for years, where findings show a weighted average of approximately 5 years for dependent people in different environments (FCA, 2001).
Having outlined this situation, it is not surprising from the social and psychological perspective that there is a major concern regarding the impact of the care situation of a dependent person, which can be generated on the informal caregiver. In this sense, informal care has been conceptualized as a vital stress factor event (Zarit, 2002), which jointly with its chronic character and the lack of foresight about the time of its finalization, has been associated to the negative repercussions on the physical and psychological well-being of the informal caregiver. This situation has been generically denominated with the overall term of caregiver burden.
In January 2007, the Law of Promotion of Personal Autonomy and Care to Persons in a Dependency Situation came into force in Spain, thus constituting the fourth column of the welfare state which, for the first time will provide care to this population group with a specific system equivalent to what European countries such as Austria, Luxembourg and Germany have already done previously. Since the institutional implementation of social protection systems in Spain in the early 1980s, the benefits and services for people with disabilities and dependence have been uncoordinated and dispersed between the social security system, the social services, and health care systems. The new law, which will deal with dependent people and their caregivers, however does not specifically assume the problems associated with the excessive burden of the persons who informally care for them and it also fails to include intervention alternatives or health and social care coordination methodologies.
As a result, we have performed the following theoretical and empirical revision of the burden concept and the social and psychological intervention programs which will make possible to inform and orient the Spanish Public Administrations and in turn, they will serve as a guide for researchers and professionals involved in the responsibility to handle the problems linked to the burden of the informal caregivers of senior dependent people.
Section snippets
The burden concept: theoretical perspectives about caregiver stress
At the beginning of the sixtieth decade, Grad and Sainsbury (1963) mentioned this concept for the first time in the scientific bibliography, when they described the burden perceived by family members when caring for their relatives affected by some mental illness in their residence. The definition which was given to the burden concept at that time, and which has been adopted by other authors in a more or less extensive way in the research about the negative repercussions of informal care, has
Empirical results about caregiver stress
The studies have shown the existence of negative repercussions of the burden on the physical and mental health of the informal caregivers of dependent people. On the one hand, the effects of the caregiver burden on the mental health of the caregivers are essentially depression and anxiety as well as high stress levels; equally it finds that the probability of the development of these disorders is greater in women than in men, and this larger risk is also linked with a greater assumption of
Intervention programs to alleviate the caregiver burden: the respite services and psychosocial programs
The respite services essentially refer to the services which are offered to the dependent person and which allow the caregiver to temporarily rest from his/her responsibility and the demands, generated by the continual care. This type of resources includes the In-Home Help Service (HHS), the day care centers, and the residential or overnight cares centers. They permit the substitution of the care provided by the informal caregivers by means of professionals, providing them free time and rest in
Conclusions
Several investigations have proposed the suitability of combining both types of programs, the respite services and psycho-educational programs, to deal with the excessive burden of the informal caregivers of dependent people (Carretero et al., 2007, Garcés et al., in press). Specifically in Spain, the use of HHS is an important social resource which exists in the network of Spanish Public Social Services, which would be useful to provide respite to the caregivers of dependent people for their
Acknowledgments
The Ministry of Science and Education (SEC 2002, 02634) and the Consellerías de Sanitat y de Bienestar Social of the Generalitat Valenciana (Spain).
References (50)
- et al.
Mental illness and the family
Lancet
(1963) - et al.
Caregiving and risk of coronary heart disease in U.S. women: a prospective study
Am. J. Prev. Med.
(2003) - et al.
Factors associated with the positive impact of caring for elderly and dependent relatives
Arch. Gerontol. Geriatr.
(2005) - AARP, 2006. Fall 2006: Long Term Care. Advancing International Long-Term Care Initiatives through Cross-Atlantic...
- et al.
Profiles in Caregiving: The Unexpected Carer
(1995) - Bass, D.M., 2002. Content and Implementation of a Caregiver Assessment. Issue Brief. National Family Caregiver Support...
- et al.
Psychosocial effects on carers of living with persons with dementia
Aust. N Z J. Psychiatry
(1990) - et al.
La Sobrecarga de las Cuidadoras de Personas Dependientes
(2006) - et al.
Evaluation of the home help service and its impact on the informal caregiver's burden of dependent elders
Int. J. Geriatr. Psychiatry
(2007) - Council of Europe, 1998. Recommendation No. R (98) 9 of the Committee of Ministers to Member States on Dependence...
Symptoms of mental impairment among elderly adults and their effects on family caregivers
J. Gerontol.
Dementia caregiver burden: a review of the literature and guidelines for assessment and intervention
Neurology
The State of the Art: Caregiver Assessment in Practice Settings
Impact of psychoeducational interventions on distressed family caregivers
J. Clin. Geropsychol.
Change in indices of distress among Latino and Anglo female caregivers of elderly relatives with dementia: site-specific results from the REACH national collaborative study
Gerontologist
Assessment of family caregivers of older adults
Caregiver well-being: A multidimensional examination of family caregivers of demented adults
Gerontologist
Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers
Can. Med. Assoc. J.
Home-based and Long-term Care
Health of Informal Caregivers: Effects of Gender, Employment, and Use of Home Care Services
Cited by (232)
Identifying with other animals and human well-being: Extending perspectives on the social cure and human-animal relations
2022, Journal of Veterinary BehaviorCaregiving stress among family caregivers of older adults living with disabilities in China
2022, Geriatric NursingBurdening caregivers of patients with schizophrenia at Edward Francis Small Teaching Hospital, The Gambia
2024, Social Psychiatry and Psychiatric EpidemiologyAssessment of stress in caregivers of acutely hospitalized elderly and its relation to hospital outcomes
2023, Middle East Current Psychiatry