Introduction

In the coming years, many European countries will have to face important demographic, technological and social challenges with profound changes in the current systems of care [1, 2]. This transformation has already started, although at different speeds among countries [3, 4]. In this way, Long-Term Care (LTC) systems are evolving into mixed models in which care is considered to be a shared responsibility, as opposed to models in which care is considered the responsibility of either the Welfare State or families [5, 6]. Non-professional care, also called informal care, is and will be a key element of LTC systems. Defining informal care is not straightforward [7, 8]. It encompasses a set of complex activities and tasks provided by non-professional people, normally by family, close relatives, friends or neighbours, whose objective is to help a person with limited autonomy to perform the basic or instrumental activities of her/his daily life. Informal caregivers usually have no limits on the time spent providing care. They do not usually receive any remuneration for their services although there can exist specific benefits, training and support programmes for carers in some countries [6, 9]. In sum, its most distinctive features are the non-professional character of caregiving and the affective relationship between the person being cared for and the caregiver.

One of the main challenges that LTC systems face is their financial sustainability. Some estimations point out that the public resources allocated to LTC systems might double, or even more, in the coming decades [10]. It is difficult to contemplate the sustainability of such systems without the intervention of informal care, since some authors maintain that up to 80% of long-term care could be provided by non-professional caregivers [11]. This does not mean that this resource is free. In this way, the opportunity cost of time spent by family carers may exceed the expenditure of formal care, especially in those countries such as Spain, where family is the backbone of LTC [12]. Such opportunity cost caused by family care is mainly associated with a reduction in labour force attachment for caregivers of working age as well as with a burden in terms of health and social problems suffered due to the care provided [13]. In fact, it has been supported that caregiving is undervalued socially and economically [14]. Therefore, not taking into consideration the opportunity cost of informal care might hide a relevant component that is part of the sustainability of LTC systems.

In fact, until recently, informal care had received little attention from policy makers [15] and has had low or even non-existent social recognition in many countries. However, the changes in the patterns of illness, with (i) a prolongation of life expectancy, (ii) significant number of elderly people with limitations, and (iii) the aforementioned demographic and social changes, have revealed, in an evident way, its current and future relevance [16]. For this reason, over the last 15 years, the recognition and the formalisation of the role played by informal carers (thought training opportunities, social security, legal rights and/or cash payments) has been one of the main trends within LTC system in Europe [17], helping to ensure the sustainability of caregiving overall. Therefore, recognising the informal carer`s needs as well as pointing out its monetary value, is one of the current priority for LTC policies.

The inclusion of informal care in the field of cost of illness studies is increasingly frequent in those diseases that cause a high degree of dependence such as Alzheimer disease, stroke, rare disease and mental illness, among others, revealing its economic relevance from the societal perspective [18, 19]. On the other hand, in the field of the economic evaluation of health care interventions, the inclusion of informal care is strongly conditioned by the rules that each country adopted or recommended [20]. However, in a context of population aging and with an increasingly important presence of chronic diseases in the demand for health services and in the global burden of diseases, their inclusion is compulsory for the aforementioned diseases if the perspective employed is the societal one.

At the macro level, some studies have tried to estimate the aggregated value of informal care at the national level [21–25]. The results of these studies conducted in the USA, Canada, France and Spain confirmed that family caregiving has a highly significant economic impact at an aggregated level. These results are robust in spite of the differences in the methodological issues and the asymmetric development of formal long-term care systems among countries. However, there is not a unique approach agreed upon the assessment of informal care. In fact, very few papers have employed different techniques to estimate the value of the care provided by informal caregivers. Therefore, the goal of this paper is twofold. First, we will identify the variables associated with the amount of informal care time, measured in terms of time of care provided by a sample of informal caregivers. Secondly, we will value this caregiving time using the three most frequently used techniques in the field of health economics: opportunity cost, replacement cost and contingent valuation.

Data and methods

Results

Table 1 shows the main sociodemographic characteristics of caregivers considered in the analysis. More than 56% of the caregivers were female and the average age was 59.8 years. Likewise, around 40% of carers had no studies completed, 25.9% had primary education and 34% secondary or tertiary education and almost 88% of them cared for individuals with severe or major dependence. Their HRQoL was 0.827 over 1 and almost 5% of them coped negatively with the care provided. More than 85% of individuals who received care had social services at home, 17.38% received services out of home and more than 79% had monetary benefits. This table also provides caregivers’ information separately by gender. Thereby, figures show that male caregivers were older than females (62 vs 57 years old). Moreover, it is also identified statistical differences in the percentage of caregivers who cared for individuals with monetary benefits, being those individuals cared by females the ones who received a higher proportion of such benefits. Finally, male carers provided more weekly caregiving hours (122 hours per week vs 113 h per week, respectively).

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Table 1. Sociodemographic characteristics of caregivers.

https://doi.org/10.1371/journal.pone.0217016.t001

Table 2 shows the results obtained from the ordered logit model which displays the main determinants of caregiving hours. Thus, gender, age, region, level of dependence as well as the social services received are the main factors associated with the amount of caregiving time received. Thereby, women had 9.6 percentage point less probability of providing a high amount care (more than 130 hours of care per week). Likewise, those carers who were older than 65 years had 17.2 percentage points higher probability of providing a high amount of care compared to those caregivers younger than 50 years old. Besides, caregivers living in Granada had 26 percentage points lower probability of providing more than 130 hours of care per week compared to those living in Gipuzkoa. Likewise, those who cared for individuals with major dependence had 17.4 percentage points higher probability of providing more than 130 hours of care per week, compared to those who cared for individuals with moderate dependence. Finally, those caregivers who cared for those receiving social services at home had 13.6 percentage points more probability of providing a high amount of informal caregiving while those who care for individuals with social services out of home had 18.2 percentage points less probability of providing informal care. Such results indicate that services received at home are complementary to family care, while services received out of home are substitutes to informal care.

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Table 2. Determinants of informal care time.

Results from the ordered logistic model.

https://doi.org/10.1371/journal.pone.0217016.t002

Regarding the assessment of caregiving time (Table 3), the number of weekly hours of care ranged between 96.6 and 117.1 hours (between 5,035 and 6,106 annually hours), depending on whether the hours were censored or not (Table 1). The highest valuation resulted from using the replacement cost method, with an annual valuation (without censure) of EUR 80,247 per caregiver (EUR 98,136). This means that the unit value of care time stands at EUR 15.9 (EUR 16.1) per hour of care. The economic value was lower when applying the opportunity cost method, with a total annual valuation (without censorship) of EUR 27,140 per caregiver (EUR 32,512). The reason for this lower valuation is due to the unit value of care time applied in this method, which stands at EUR 5.4 euros (EUR 5.3) per hour of care. This is because a great part of the time of care is unpaid work-leisure. Given that this use of time has been valued very conservatively (EUR 5.05 per hour), this explains the differences between the valuation achieved by this method and the replacement cost one. Third, the valuation achieved through contingent valuation techniques led us to annual figures ranging from EUR 14,325 per year and per caregiver (WTP) to EUR 29,343 (WTA) (EUR 17,577 and EUR 33,744 without censorship). Thus, the unit values of informal care range between EUR 2.84 (WTP) and EUR 5.83 (WTA) (EUR 2.88 and EUR 5.53, respectively, without censorship). The consideration of protest zeros and economic zeros modifies only slightly the assessments of total and censored care time, given the limited number of these cases.

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Table 3. Economic valuation of informal care (annual) per caregiver.

https://doi.org/10.1371/journal.pone.0217016.t003

Discussion

This study analyses the monetary value of informal caregiving in two different regions of Spain. This assessment has been carried out applying different techniques, which provide very different figures depending on the approach considered.

Although the selection of carers was not carried out looking for representation at the national level, our results show the high number of informal caregiving hours for family members and friends of the caregivers interviewed. In this sense, it should be stressed that there is a high heterogeneity between OECD countries in the provision of such service. For instance, countries such as Spain, Portugal or Poland have the highest rate in the amount of care provided by informal caregivers, where more than 50% of informal caregivers provided more than 20 hours weekly, while in countries such as Denmark or Norway only 9% of carers provided such an amount of caregiving hours [10]. This is a very relevant issue to be considered when taking into account the composition of the LTC system in Spain, in which family plays a dominant role as it is the safest care provider to cover the needs of people in situations of dependency, while the public-sector support is secondary [37]. In this sense, in 2006, the Law of Promotion of Personal Autonomy and Assistance for Persons in a Situation of Dependency (SAAD) was established in Spain in the framework of a LTC system to provide care to people with difficulties in carrying out daily life activities. However, instead of offering services in-kind, the monetary benefits from providing care to their relatives have become a common practice because they are not only more affordable than investing on or contracting out service provisions, but also because cash benefits are preferred by families (they represent an income entry for the household and they do not have to bear the co-payment for in-kind services) [37]. Then, due to the high number of hours of caregiving, the composition of the LTC system as well as cultural aspects, the care provided by family members plays a fundamental role within the LTC system in Spain, and, therefore, it needs to be considered when designing policies focused on personal care of people with limitations in their activities of daily living. However, this is not limited to the Spanish sphere, but is extended to all of Europe, since the traditional distinction between professional and non-professional (informal) care is being transformed in the context of the evolution of long-term care systems [38].

In this sense, the literature has studied the relationship between formal and informal care from several alternative ways. Firstly, the compensatory model holds that caregivers may lean on formal care when no other alternatives are available. This model establishes that the family is the first group in terms of importance in the support of people who need it and that the patterns of assistance follow a hierarchical order determined by the preferences of the individuals. Each of the groups -first the family, followed by friends and neighbours, and finally the formal services-, provides assistance when the previous preferred sources of support are not available (substitution model) or are insufficient (complementarity model). Finally, the task specific model considers that what determinates the type of care provision is the nature of the task (informal care is usually used for tasks in which an affective relationship is present as well as in tasks of supervision care) [39, 40]. Our estimates actually indicate that services received at home are complementary to informal care while services received out of home are substitutes to informal care. This conclusion is in line with the previous literature in which different assumptions about the relationship between formal and informal care are considered [41].

Moreover, taking into consideration all the aforementioned assumptions, the literature reveals that the relationship between these two types of care would depend on the health status of the person who is cared for (such as the diseases suffered from), tasks needed, the relationship between the carer and the dependent person, household income and sociocultural factors [42–47]. Our statistical analysis reveals that the main variables associated with the amount of caregiving time provided were gender, age, region, level of dependence as well as the reception of social services. On the other hand, contrary to the literature that indicates more intensive care in women [48–50], our study indicates that women have a lower probability of caring intensively than men. Possibly this could be due to the fact that the profile of male caregivers of the sample are mostly older men who take care of their wives at home, while women have a more heterogeneous profile [13].

Another relevant result from our analysis confirms that the election of the valuation method applied has a considerable influence in the result as the average cost ranged from EUR 80,247 per year (when considering replacement method) to EUR 14,325 (WTP), going through EUR 27,140 (opportunity cost method) and EUR 29,343 (WTA). This high disparity in the value of informal caregiving time implies that the choice of the valuation method is not neutral. A recent systematic review on cost of illness studies that included informal care costs revealed that the opportunity cost method is present in almost 69% of the studies and the replacement method in 27% of them [18]. So, if the election of the approach has a strong influence on the estimated values of the cost of a disease, it could also influence the results of the economic evaluations of health interventions in diseases that require intensive informal care.

In any case, and even using the most conservative estimates, the results indicate the great importance of informal caregivers in Spain as a care network for people with limited autonomy. This can be proved by comparing the results of our estimates with the public prices (tariffs) of professional (formal) care published by Spanish public institutions [31]. Thus, the average annual price of a place in a day centre in Spain was estimated at EUR 8,750 (EUR 15,500 in the Basque Country and EUR 7,300 in Andalusia), while the annual price of a residence place amounted to EUR 18,000 (EUR 23,000 in the Basque Country and EUR 17,000 in Andalusia). This means that the estimated annual opportunity cost of informal care estimated in our work exceeds the cost of a residential place. On the other hand, the public price of a residence is much lower than the estimated value of informal care using the replacement cost, although we should consider that the cost of replacement is established based on a home care service while the residential place would mean changing the environment of the person cared for.

Considering the great importance of informal care in Spain, as well as the predictions stating that future demand of informal care will exceed the supply [51, 52], a prompt replacement of informal care for professional services would collapse the long-term care system and make it financially unsustainable. Therefore, it is essential to consider the current role of informal care not only in Spain but also in most European countries in order to evolve towards a LTC system that provides much more support to informal caregivers and where the transition between informal care and formal care is carried out in a smooth and programmed manner.

Some limitations should be highlighted. Firstly, the survey used is a cross-sectional and not longitudinal data. A consequence of such limitation is the impossibility of establishing a causal association between the caregiving time and the elements analysed. Secondly, the sample involves carers living in two different regions of Spain. Therefore, it is not a representative at the national level. Consequently, caution is needed when extrapolating such results to the entire population or population caring for individuals with specific diseases. Third, when estimating the value of informal care using the opportunity cost approach, the shadow price applied to leisure time has been the same as that applied to unpaid production time. The absence of Spanish studies on the value of leisure time has advised acting in this way. Finally, with respect to the methods of assessment of informal care, each of them has advantages and limitations [7], so there is no single commonly accepted method of assessment. This is not a limitation proper of this work and suggests that, in the estimation of the value of informal care, it is useful to consider the application of several methods to enrich the analysis. Finally, it should be mentioned that all the individuals from Gipuzkoa included in the sample received some social/formal attention services, and this might influence the results. In fact, a possible limitation of the study is that caregivers who have not had any contact with health or social services have not been included. It is likely that this missing profile corresponds to people with less involvement in care. In any case, we consider that the profile that we collected in this study is that of caregivers with a high dedication to care. Therefore, the results could be extrapolated to this caregiver profile.

Several future lines of research arise from the results of the present study. Firstly, when the amount and the value of time caregiving are analysed, it would be interesting to find out whether family care causes an effect on caregivers, in terms of burden and other impacts (in three different dimensions: physical and mental health, professional and social life) because of the tasks carried out. Moreover, due to the differences found in the value of WTA and WTP, it would be convenient to analyse in detail the main factors that explain the valuations reaches with each of these contingent valuation technique.

Supporting information

Acknowledgments

Authors would like to thank the comments and support received by Beatriz Rodríguez and José María Abellán.