Effect of the act on promotion of personal autonomy and care for dependent persons on their family caregivers

Our society is nowadays immerse in the adaptation to a new framework derived from social-demographic, epidemiological and cultural determining factors which have led to a progressive inflation of the need of home care services. The composition and operability of the families as well as the gender influence in the family function, are considered as essential elements in regards to the need of home care services. The commitment for providing care is guided by strength cultural standards which generate important driving forces [1], as the family is considered as a matrix cultural value in terms of sustainability. Elderly persons are aware of the difficulties for their descendants to reconcile their socio-labour life with the attention they require, however, despite this fact, is not just a matter about the strong family ties, but also about the bond with the environment in which this relation is developed, thus, considering the strength ties to their home as critical factors in terms of stability within the aging process. Thus, the measures favouring that the elderly persons stay at their home are very appreciated (Day Care Centres, telecare, home care assistance), as they keep an essential pillar in their value system, acting as antidote against loneliness as well as promoting the social participation. In contrast, the institutionalization in elderly nursing homes is negatively considered by society [2].

The scenario shows an inexorable reality: in our country, most of care to dependents persons is provided by non-professionals carers (nearly 90%) [3]. Given the recent data, according to the report issued by the Andalusian Statistics Office (IEA as per its Spanish acronyms) in regards to Dependency and Solidarity in the family net, one third of the Andalusian population has any relative with need of care and assistance and more than half of these people, provides this assistance [4]. This situation contrasts with the situation in those countries with more tradition and development of home care services, as it was highlighted in the study AdHOC which carried out a transversal analysis on the different modalities and addressees of home care assistance services in 11 European Countries [5].

Thus, in those countries in the North of Europe, despite the proportion of elderly people living alone is higher, the formal assistance and home care services doubles those services provided in countries in the South of Europe. In regards to the care and assistances assumed by the members of the families at their homes, attending the need of assistance, there are three main type of services: a) Those covering the most basic needs: accommodation, feeding, cleanness, security, etc., b) Those non-waged care directly related to the illness, the disability and the death (early diagnostic, to make company to the patient, transportation, treatment application or follow-up, etc.) and c) the management of the health services use (election, arrangements, payments, information, etc.) [6].

When appointing the roles to provide care among the members of the families, there is a clear gender bias in place, which arises from cultural values ties, being the woman closer to the patient (wife, mother, daughter in law, daughter…) who plays the main role in the care to the patient. Furthermore, this role is usually assigned to those people within the family unit with non-waged activities, and in those cases when the person assigned has indeed a labour activity, they face great difficulties to go ahead with their tasks without suffering a financial negative impact. The recent studies carried out in Andalusia reports about 30% of women devoting more than 20 hours per day to care a loved one [3, 7].

According to the report on Living Conditions of Elderly Persons, 57% of the caregivers do not count on anyone else’s support to provide such care and 62% receive a low rate of social support [2]. One review by Morris in regards to 45 studies on home care assistance services and caregivers from a gender point of view, does confirm the aforementioned matter, above all, because men and women do have different social and financial contexts and expectations on their role, and for such reason, women perform situations which requires deeper care assistance. It also identifies a lack of studies comparing the consequences of those choosing the role of family caregiver versus those who are obliged to comply with this role [8].

Durán considers the amount of caregivers in Spain is around 1,500,000 and, according to the author of this study, this amount would correspond to a “working population” rate higher than the total amount including the agricultural, extractive industries, gas and electricity sector [9].

The dependent’s relative becomes his/her caregiver within a progressive process, starting usually by establishing some limits that the caregiver is not willing to exceed (whether due to a lack of capacity or willingness). However, those limits are exceeded insofar the request of care rises. This process, which might take years, decreases the physical health (inappropriate spaces for care, mobilization without help…), and the mental health (mental burden full of uncertainty, anxiety, insecurity, responsibility, etc.…) in those persons performing this role and it often generates social impoverishment (loss of social relationships, difficulties to go ahead or starting labour activities, impact on the relationship with the remaining members of the family) and an irrevocable decrease in the quality of life [10]. The influence of the care on the person while the caregiver performs this function is quite analysed in the respective literature, although not always with solid and conclusive designs. In global terms, the depression appears as the most determining factor of the physical health of the caregivers comparing it with the general population. This fact appears in higher rates in persons caring patients with dementia or behaviour disorders [11, 12].

The combination of an extended stress situation, the physical demands of the caring actuations and a higher biological vulnerability in elderly persons who are caregivers themselves, might increase deeply their health problems leading them to death. The standard study of cohorts by Schulz and Beach showed that the mortality risk increased in the elderly spouses who acted as caregivers and experienced tiredness and overburden in regards to this role, thus, being considered as an independent predictor [13]. Later on, some results have been published showing that taking care of a loved one more than 9 hours per week, nearly duplicates the risk to suffer cardiovascular events [14].

Although the emotional disorders and psychiatric morbidity of caregivers have been widely analysed in most of the studies and its remarkable appearance is obvious, there are no suitable studies of cohorts carried out, and, in contrast, there are a huge number of transversal studies.

For instance, in regards to the anxiety, a recent systematic review could not determine which risk factors are considered as the most relevant for the appearance of anxiety in caregivers due to the mentioned lack of methodology [15].

In the depression cases, there are indeed longitudinal studies which have evidenced the long-term impact of the presence of recurrent depression symptoms in caregivers [16]. According to different studies whose results varies significantly, it is recorded an increase of the relative risk of depression ranging from 2.80 – 38.60 [17]. In regards to the quality of life, despite it is obvious that it might be affected by the fact of taking care among those who have lived this experience, and despite there are a number of instruments intended for its assessment with good psychometric properties [18, 19], the studies have been mainly focused in the measurement of the overburden which are not considered to be equivalent concepts, although it is related with the quality of life [20].

Given this situation, which are the interventions available? During these last two decades, the number of experimental studies intended to evaluate the different interventions have rose considerably. Many of them are based on cognitive and behavioural interventions, others have an organizational nature, and also multicomponent and pharmacological interventions, etc. In the last 6 years it has been published nearly a tens of meta-analysis and systematics reviews which have assessed many of these aspects [21, 22]. In general terms, some behavioural interventions whether in group or individually have effects on the satisfaction, the subjective welfare, the depression or the knowledge level. However, the heterogeneity of studies and designs encourage to study these interventions in-depth in prospective research of better quality, including a higher number of patients as well as with a better definition of the interventions. In summary, the multicomponent intervention and specifically those involving the patient are usually the most effective interventions. It is worthy to mention that the respite care, despite it improves the satisfaction, does not affect the overburden and they neither reach to postpone the institutionalization [23, 24].

Besides, the results of qualitative research are quite numerous in the specialized literature and have described the experience of the informal care in different contexts and aspects, however, for the time being, there are no qualitative meta-synthesis which might allow to achieve evidences [25, 26]. The fact that the Health Services address their attention to this these caregivers increases the opportunities of encounter as well as it improves the sensitivity of the health professional sector about the specific situation they live. In the research study by Morales, which was carried out in Andalusia, it has been evidenced how the intervention under a model of cases management, substantially improved in 12 months the overburden level in the experimental group. It likewise improved the accessibility to the social services, improved the multi-professional intervention on the caregivers and their relatives as well as it increased the technical assistance flow, thus, improving their satisfaction while the visits to the Health Centre decreased [7]. Finally, the disposal of measures including benefits and allowances intended for the care of dependent persons have shown an increase in the costs, however, in consideration of these costs, in some studies it has been evidenced an increase of the welfare of both, the dependent person and the caregiver despite there are still some doubts in regards to the assessment methods of these programs in U.S.A. [27]. The German funding model on Dependency has shown positive results as per the increase of community services and the support to the caregivers [28], although it has not reached to solve the permanent distance between the health and social assistance services, among other problems [29]. In other places as it is in Japan, it has been observed how the use of the resources and assistances intended for the dependency are highly influenced by the decisions of the family caregiver [30] and it has been observed some effects of this regulation on the benefits to the dependency on the overburden and depression level of the caregivers [31]; A recent longitudinal study carried out in the mentioned country has shown a lower mortality rate in dependent men who receive informal support, despite this effect was not observed in those cases in which it was the wife who received the benefits for dependency [32].

In Spain, the Act 39/2006 dated December 14^th, on Promotion of Personal Autonomy and Care for dependent persons created a new subjective citizenship right in the Spanish National Territory: The right of those person who cannot take care of themselves, to receive the necessary attention by the public authorities. Likewise, the Act created the Autonomy and Dependency Care System (SAAD as per its Spanish acronyms) intended for the collaboration and contribution of all the Public Administrations involved which is also intended for the optimization of the public and private resources available. The Act includes three dependency stages and there shall be two levels in each of them depending on the autonomy of the persons and the specific care they require (there are specific provision for child under 3 years of age).

In the Autonomous Community of Andalusia, it has been submitted 282,415 applications in May 2009, out of which, 226,636 (86.69%) of them have been ruled, and out of the later, 50.27% (113,923) corresponds to Dependency Stage III and 27.22% (61.688) out of them corresponds to Dependency Stage II [33].

This Act guarantees to the dependent persons and their caregivers, to have access to social services (home care assistance, day care centres, telecare, places in elderly nursing homes) or the financial benefits they might need, however, given the experience in different places as described above, as well as the social significance of this regulation, some doubts arise in regards to its possible effects in the physical and psychological health of the family caregivers.

From the point of view of the development of this incipient Act, as well as on the potential impact in the population’s health, to carry out studies which provides relevant information or which might assist to create hypothesis for the continuity of lines of research is an unavoidable need for the design of health and social policies in the next few years.

This study is intended to know how the Act on Promotion of Personal Autonomy and Care for dependent persons is affecting the mental health, quality of life and use of health services by the family caregivers and also, if the benefits stage chosen makes the difference in these variables.

In Spain, the Act on Promotion of Personal Autonomy and Care for dependent persons created a new subjective citizenship right in the Spanish National Territory: The right of those person who cannot take care of themselves, to receive the necessary attention by the public authorities.

This Act guarantees to the dependant persons and their caregivers, the access to social services (home care assistance, Day Care Centres, telecare, places in homes for elderly persons) or the benefits they might need, however, given the experience in different environments, as well as the social implication of this Act, some question arises in regards to the possible effects in the physical and mental health in the caregivers. The potential benefit of registering in Andalusia the possible short-term effects of the Act LPAPAD, which is the main agent supporting the dependent persons (and their caregivers), will help in the decision-making process on social and health policies as well as on a possible reorientation of services or which might lead to the development of the Act.