Dependent caregiver care

The article tries to carry out a review of the existing bibliography and the changes that have occurred since the Psychiatric Reform produced in the 80s, in which opted for a decentralization of health care and comprehensive treatment that included social aspects, along with medical and psychological already existing.

History is analyzed with its consequent change in health and extra-health systems, the repercussions of care for caregivers and the help they find every day. Finally, various associations and conclusions are proposed. Keep reading PsychologyOnline to know the dependent caregiver care.

Index

1. What is the history of caregivers
2. What is the profile of the caregiver
3. What are the consequences of de-institutionalization for the caregiver
4. What are the effects of caring
5. What help do the caregivers have?
6. Formal support for caregivers
7. Educational programs for caregivers
8. Do you know any associations?
9. Conclusions

With the Psychiatric Reform

We are now in a delicate moment, in a moment of adaptation to the new demands, also confirmed in the data of The OMS, where a quarter of the patients who go to health centers do so, in general, for a problem related to Mental Health.

In the decade of the 60s and 70s, in Europe research and bibliography were developed that recommended the decentralization of care and the reduction of hospital admissions psychiatric hospitals, but in Spain, we continued to build centers in which the custody of inmates dominated their medical-health care and their legal security.

In 1975, the "Report to the Government of the Interministerial Commission for Health Reform", where the characteristics of Mental Health Care are addressed, it is stated that" within a disintegrated, chaotic and anachronistic, highlights the state of underdevelopment and inadequacy of the psychiatric sector, which plays the role of Cinderella "(Commission Interministerial, 1975)

After the creation in 1983 of the Ministerial Commission for Psychiatric Reform, it is intended to express that mental health cannot be conceived without general well-being that includes aspects bio-psycho-social. As expressed in April 1985 in the report prepared by the aforementioned commission: "The development of rehabilitation and social reintegration services is recommended. necessary for adequate comprehensive care of the problems of the person with mental illness, seeking the necessary coordination with the services social".

On April 25, 1986, article 20 of the General Health Law establishes the community, universal and free nature of mental health services. Should promote a reform in the psychiatric hospitalization units of general hospitals, developing rehabilitation and social reintegration services and strengthening the structures out-of-hospital

Although these proposals represented a theoretical advance in the treatment of patients with mental disorders, their implementation was much more problematic due to the resources resources available, in many hospitals resources were withdrawn instead of promoting the creation of alternatives, as a poorly understood form of decentralization of the attendance.

Today it is understood that for the rehabilitation of a mentally ill person, it is not enough to control their symptoms, but rather the development of autonomy, social and family skills, etc.

With this social and family reintegration of the mentally ill, increases the quality of patients, but not always that of family members, who must act as caregivers.

Who trains the relatives? Who prepares them to adequately carry out what is being asked of them? The family does not cause the disease but suffers many of its consequences and is not always prepared to face the problems that can arise due to mental illness.

In Spain, 84% of the sick live with their family. This is usually the case in Mediterranean countries, in Ireland and in Latin American countries. In the rest of Europe and America, most of the patients live alone, as a couple or in a group and those who cannot do so live in residences or institutions.

The rest of the patients live far from their caregiver. Family members or other caregivers caring for the mentally ill may have complications in your physical health, in your mood (anguish, anxiety, depression), disorders sleep, etc.

While the quality of life of patients has received considerable attention in recent years, studies of its non-professional caregivers, such as family members and relatives, are rare. The few systematic studies on caregivers carried out have tended to focus on caregivers of the elderly, of the chronically physically disabled and, to a lesser degree, of mental disabilities (Herman et al. 1994).

Family associations have conducted studies using questionnaires on the burden of caregivers in the United States (Johnson, 1990; Spaniol et al., 1985), in Great Britain (Atkinsom 1988) and in other European countries. Among the most recent, a comparative study of 10 European countries sponsored by EUFAMI, the European Federation of Associations of the Mentally Ill, stands out.

Although there is no single factor that by itself determines the caregiver's quality of life, it is possible to find common ground despite the multiplicity of personalities and influences of different assumptions. All caregivers share a similar fate: their lives are dominated by having taken responsibility for their mentally ill family members. All bear similar psychological burdens and are exposed to similar situational stressors. Their radius of freedom to react to such pressures is limited by external (social) forces.

The main factors that interact to model the perception of the caregiver on their quality of life are:

• Personal characteristics
• Situational stressors.
• Social stressors
• Iatrogenic stressors.

The various studies show that caregivers are usually female, middle or elderly, with little or no working life. This last characteristic appears as descriptive in numerous studies, although logically, it could be treated as a consequence of the lack of time derived from caring for a sick person mental.

These data are confirmed by studies such as those carried out by the IMSERSO on caregivers of the elderly, which included patients with different types of dementia. In this study, the results support that the majority of caregivers are female and middle-aged. According to the study (INMSERSO, 2005) when the elderly require help, their main caregiver is usually a woman (84%) of intermediate age (M = 53 years), housewife (44%) and in most cases daughter (50%) or spouse (16%).

Similar data are found in the study by Escudero et al. (1999) where 90.4% of the caregivers are women, 54% daughters, have a mean age of 59 years, although 69% of the caregivers are older than 64 years. The presence of middle-aged caregivers is also the majority in almost all the studies carried out in our country (Alonso, Garrido, Díaz, Casquero & Riera, 2004; Spleen and Domínguez-Alcón, 1996; Mateo et al., 2000; Rivera, 2001)

Finally, supporting the previous data, although providing new explanations, is the research carried out by A. Martinez, S. Nadal, M. Beperet, P. Mendióroz and Grupo Psicost, in which it is concluded that the main caregivers are mothers, middle-aged or elderly women without incorporation into the labor market. Although in which sociodemographic and family changes, with the consequent incorporation of women into the world of work and aging of caregivers, may affect the medium term to the care of schizophrenic patients, making it difficult to transfer obligations from parents to siblings and the assumption of caregiver burdens by the families of the new sick. As they age, the ability of caregivers to effectively help patients is limited, but their concerns for them increase so the overall burden never diminishes.

60% of the caregivers have a low educational level (i.e. without studies or primary studies), while in of the general adult population, only 18.8% have no education and 25.1% have primary education (IMSERSO, 2005). Figures very similar to those found in the longitudinal study “aging in Leganés” (Zunzunegui et al., 2002), where 58.5% of the caregivers had not completed their primary studies, and the studies of Millán, Gandoy, Cambeiro, Antelo and Mayán (1998) and Valles, Gutiérrez, Luquin, Martín and López (1998) where caregivers who had not passed primary education represent 63.71% and 53.3% of the total, respectively.

Furthermore, at least 58% of caregivers lack their own income (Llácer et al. 1999) According to the IMSERSO study (2005), 74% of caregivers have no work activity (10% unemployed, 20% retired or pensioners, and 44% housewives). In fact, it is difficult to combine caring for family members with a full-time job. It is not uncommon, therefore, that many of the family members are forced to reduce their working hours or even stop working to dedicate themselves completely to caring for the sick. (Aramburu et al., 2001; Artaso, Martín and Cabasés, 2003, Rivera, 2001). Furthermore, it is almost inevitable that caregivers who work outside the home will experience tensions and dilemmas between their care and their occupation.

However, these data will change by the progressive transformation of society. The increasing incorporation of women into work, the decline in birth rates and the change in intra-family relationships will make - they are already doing - that more and more caregivers who have to reconcile the performance of a profession with the care of the family member, that there are more and more male caregivers and of an older age advanced. (Rivera, 2001; Rodríguez, 1994).

When a family sees before the ordeal of a member being affected by the disease, it is obvious that the structures and functions of the family are affected and have to adapt again, however, despite this, 70% of families improve in terms of functioning and relations. On the other hand, a certain amount of anxiety, anguish, fear and depression are inherent to the experience of becoming ill, it is considered normal, and even adaptive (Navarro Góngora, 1995).

Stress present in caregivers It depends on an initial assessment of how threatening or harmful the situation is, as well as on your own abilities to care for your family member. The evaluation of the stressor can produce positive feelings (satisfaction in the relationship with the patient) or negative (overload or perceived stress). That is, the caregiver may or may not face and handle the problems that come to him when caring for a person with a mental disorder.

If the situation is assessed as threatening and the caregiver finds himself without sufficient resources to deal with it, then he is perceived to be under stress. The assessment of stress leads to the development of negative emotional responses (e.g. anxiety symptoms, depressive symptoms ...). These negative emotional responses can trigger Physiological or behavioral responses such as not getting enough rest, not having adequate nutrition, neglecting one's own state of health, not going to the doctors for their own health problems. health, etc.

In extreme conditions, all of the above can contribute to appearance of emotional or physical disorders. That is, they increase in the subject the risk of a physical or mental illness (e.g. mood disorders, anxiety disorders, cardiovascular problems, infectious diseases ...)

It may also be the case, although less frequent in the care of the elderly, that stressors are valued as benign or that the caregiver feels that he has the capacity to cope with them. This results in positive emotional responses that lead to healthy psychological and physical responses. It is theoretically possible but empirically the least common.

There may be a third case, in which the evaluation of the stressor is not perceived as stressful and does not lead to a negative emotional response, that is, the caregiver you are proud of developing his role, but in the same way you can neglect your own needs (dedication to work, adequate sleeping and eating patterns, etc).

In turn, the answers given in a given situation influence the evaluation and subsequent demands (According to the model of Schulz, Gallagher-Thompson, Haley and Czaja, 2000).

Impact on physical health

The studies carried out on the health of the caregivers have taken into account objective indicators of physical health (lists of symptoms or diseases, healthy behaviors or harmful to health ...), objective clinical indices (levels in the immune system, insulin levels, blood pressure ...) and above all, subjective evaluations of Health.

Emotional repercussions

If physical problems are abundant among caregivers, emotional problems are no less so. Caring for an elderly dependent affects psychological stability. For example, caregivers often have high levels of depression (Clark and King, 2003) and anger (Steffen, 2000; Vitaliano, Russo, Young, Teri and Maiuro, 1991).

The percentages of clinical mood disorders are especially frequent, which is why there are many people who seek help in psychoeducational stress management programs. However, many caregivers show emotional problems without meeting diagnostic criteria for clinical mood or anxiety disorders, being classified as a subclinical sample without treatment timely. Thus, the presence of symptoms such as sleep problems, feelings of hopelessness, worries about the future, etc. Therefore Gallagher-Thompson et al. (2000) propose including the depressive subsyndrome among the diagnostic categories of caregivers for 21% of caregivers who, despite being emotionally affected, do not have the sufficient symptoms or intensity necessary to reach a diagnosis of mood disorder according to the criteria of the American Psychiatric Association (i.e. the criteria DSM).

Social and family repercussions

In addition to physical and emotional problems, the main caregiver experiences significant conflicts and tensions with the rest of the family members. These conflicts have to do both with the way of understanding the disease and the strategies used to manage the family, as well as with related tensions regarding behaviors and attitudes that some family members have towards the patient or towards the caregiver who attend.

Positive repercussions

Although it is true that a significant percentage of caregivers experience strong tensions and emotional disturbances, it is It must be stated that these caregivers often show great resistance and even experience positive effects on the careful. Caregivers' situations are varied, and emotional well-being is not compromised on all occasions. In fact, if the caregiver has adequate resources and good adaptation mechanisms, the situation of caring for the family member will not it necessarily has to be a frustrating experience and certain aspects may even be found rewarding.

The positive and negative aspects of caring for a patient are not two incompatible opposing elements, they are not two opposite points on a continuum, but that research has found that these two aspects can coexist in caregivers, although they do have different predictive factors of their idea.

The disease itself is not positive, it is usually a source of discomfort for the sufferer and for the people who make up their environment, but in the process of this, positive elements can be captured by the caregiver and the patient himself, in the ability to overcome these problems.

Being a caregiver often entails important vital learning for those who carry out this role; That is, you learn to value the really important things in life and to relativize the most inconsequential. Having previously cared for, knowing from their own experience what that means, makes them closer to those who have to play this role in the future (Suitor and Pillemer, 1993).

Among the most used aids in caregiver support it should be noted:

• Formal support services.
• Informative interventions on the disease, its consequences and the management of various problems.
• Mutual aid groups.
• Psychotherapeutic interventions

In most cases, the interventions are provided by family members of the people with some type of mental disorder and their organization in associations or by services socio-sanitary; They are intended to inform about the disorder and to provide aids for greater compatibility in daily life.

Consists of the community service provision to temporarily replace the functions of informal caregivers. Here are the so-called "day centers", "home help service", "residences", and so on. In this way, a “respite” is provided for the people who have to take care of the patients, such that the aforementioned effects diminish and they can turn to their own needs.

In most cases, this formal support is not unique, and they serve as a complement to the care offered by the “informal” caregiver. Formal services can be considered as a substitute help for informal support, thus contributing to a better quality of care perceived by the patient (Montorio, Díaz and Izal, 1995).

From a theoretical point of view, this support is ideal, the problem comes when in our country the number of formal support that can be offered is insufficient to meet the demands.

In addition to being scarce, formal services are often little known by caregivers, other times they are known but there is no availability and accessibility to them, a high level of family dependency has been created or there are not enough resources to access other means of private nature to which they are sometimes forced to resort due to lack of supply of public services although their economic conditions do not allow.

These programs provide information and they want caregivers and patients to know how to take on various problems. Most of them tend to stick again, to the associations of relatives with some type of disorder and usually deal with the difficulties that they will go through, discussion of experiences personal problems, as well as possible strategies to deal with the most common problems within the disorder, but which are still different in each case, although elements are shared common. The greatest advantage of these measures is that family members find other families in the same situation, so they can feel more understood, listened to and supported.

Gatz et al. (1998) consider that, following the differentiation of the Association of American Psychologists Among well-established and likely effective treatments, caregiver treatments that include educational elements are likely effective in improving your emotional distress.

At present, the use of new communication technologies is facilitating the creation of new modes of mutual aid. Thus McClendon, Bass, Brennan and McCarthy (1998) developed a support group using terminals of connected computers, and White and Dorman (2000) used the Internet to create a support group mutual. In this way he tried to solve geographic difficulties, time available,... facilitating access to guidance, information and support.

In 1976, some relatives of people with mental illness who had already made an attempt at association in 1968, created the Nueva Vida cooperative, which was dissolved years later, in 1981, to become the Madrid Psychiatry and Life Association.

Also in 1976, in the province of Álava the Alavesa Association of Relatives of the Mentally Ill ASAFES, which is still in operation today. In 1979, AREP, the Association for the Rehabilitation of the Mentally Ill, was established in Barcelona, ​​which is still active. In 1980, similar associations were created in La Coruña, Murcia, Valencia, Tenerife and La Rioja.

In March 1982, Margarita Henkel Thim, a relative of a person with mental illness and later president of FEAFES, sent a letter to the local newspaper "La Rioja" with the title "S.O.S. Where do the mentally ill go?", in which it invites anyone who wants to form an Association of Relatives to call a number of telephone. "There are three families that call me. We become a Management Board, we continue to meet every week, looking for more families with interviews, consultations. It was a very tough job. First by the occultism of families and second by professional secrecy ", explained Margarita Henkel in the I State Congress of Associations of Relatives of People with Mental Illness, in his presentation "Roles to be assumed by the different members and levels of the associations". Valencia February 8 and 9, 1984.

In March 1983 the Constituent Assembly was held with the associations of the provinces of Álava, Valencia and Murcia of the State Federation of Associations of Relatives of the Mentally Ill (FEAFES). Years later, in 1991, it was renamed the Spanish Confederation of Family and Mentally Ill Groups, due to the fact that the increase in Associations in the different communities Autonomous organizations promote the creation of autonomous federations, valuing this type of federative organization a timely and profitable model for coordination, homologation and communication internal.

FEAFES was declared useful according to O.M. of December 18, 1996.

EUFAMI was founded in 1990 during a congress in De Haan, Belgium, where professionals from all over Europe shared their experiences of helplessness and frustration in battling mental disorders serious. During those days, a joint work of mutual aid and support for the people they cared for was agreed. They are committed to improving the well-being of people affected by mental disorders, sharing efforts and experiences across Europe.

In the light of the studies presented so far, it can be concluded that they are the caregiver related variables those that best explain its health. Thus, a lower self-esteem, the use of avoidance as a coping strategy, a greater subjective overload, a lower perception of the positive aspects of care and less social support are associated with greater health problems in the carer.

All in all, the results indicate that, regardless of the sociocultural reference group, they are the caregiver characteristics and not from the context of care those that best explain the emotional problems of caregivers. However, it seems that in our countries it is necessary to continue investigating the influence of care on the physical and mental health of caregivers.

This article is merely informative, in Psychology-Online we do not have the power to make a diagnosis or recommend a treatment. We invite you to go to a psychologist to treat your particular case.

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