Labor market costs for long-term family caregivers: the situation of caregivers of persons with spinal cord injury in Switzerland

Health systems are heavily reliant on the work undertaken by family caregivers, work that is generally unpaid [1]. Nevertheless, considering their work as a “free resource” is inadequate, as it entails many costs, being the setback in the labor market one of the most important and difficult to compensate for [2, 3, 4]. In general, family members reduce their working hours or stop working altogether to cope with the needs of care in the family [5]. And when households cannot afford the reduction in income, family members add caring responsibilities to their working schedule, which is not always the most desirable arrangement neither for the caregiver nor for the cared-for person [6, 7].

The objective of this paper is to estimate the opportunity cost in the labor market for long-term family caregivers in Switzerland. We focus on caregivers of persons with spinal cord injury (SCI), a group that reports one of the highest burdens compared to other caregivers’ groups as they spend numerous hours per day, for years, caring for a relative [8]. SCI is a complex condition that combines a high level of physical impairment (paraplegia/tetraplegia) with a series of comorbidities. Family caregivers of this group undertake a series of tasks that go from eating and drinking to transportation, to support with bowel and bladder management [8, 9]. In fact, SCI is a high-needs and high-cost health condition that is generally the result of an accident [10‐12]. This implies that family members become caregivers with any anticipation and possibility of adjustment. 

In Switzerland, long-term care does not directly support family caregivers, but care and support are provided based on the needs of a person. Professional home care is reimbursed as long as a doctor prescribes the need for the service and it is undertaken by a professional caregiver. Non-medical tasks, such as housekeeping or support with paperwork are never reimbursed [13, 14]. Thus, family members cannot receive any kind of compensation, even when their role is deemed essential for the provision of professional home care, i.e. family caregivers play a key role in the interaction between professional care services and the cared-for person [13]. Nevertheless, in some cases, family caregivers can go into specific training to become professional caregivers and be able to charge for their services.

The role of family caregivers is becoming more relevant as demographic dynamics, with the rise in non-communicable diseases, forecast a sharp increase in the number of people requiring care [15, 16]. Policy makers need to find ways to support family caregivers to guarantee their involvement in the caregiving process. Otherwise, health and social systems will not be able to cope with the population's needs as the provision of professional home care is expensive and requires an important number of trained workers [17‐19].

To support family caregivers, health systems can either compensate them for their caregiving time, or support with their caring responsibilities to make their work less cumbersome. Nevertheless, in either case, it is essential to first understand what involves caregiving, as well as the trade-offs family members face. To date, there is an increasing interest to include economic evaluations to account for the work performed by family caregivers as fiscal sustainability of the current long-term care provision is raising concerns [4, 20, 21]. Unfortunately, comprehensive data is still scarce, and existing information reduces caregiving to a number of hours of care and disregards the complexity of care. Also, family caregiving falls under the family privacy, which makes it less visible and difficult to inquire. For family members, it is difficult to disentangle the work they do as caregivers on top of their regular tasks. Additionally, there exist methodological issues because caregiving is heterogeneous and depends on the needs and characteristics of the cared-for person [22, 23]. For some health conditions, family caregivers undertake a series of tasks, some of which require some level of expertise.

Related studies estimated the economic value of family caregivers by looking at caregivers of elderly population [24], or caregivers of people with specific health conditions [25]. In general, the estimated economic value has high variations and is highly dependent on the characteristics of the cared-for person. In the case of Switzerland, there are two studies closer to ours that monetise the work undertaken by long-term family caregivers. The first study looked at caregivers of persons with Alzheimer and estimated their work in about CHF 4,608 per month (CHF 55,300 per year) [26]. A second study looked at caregivers of persons with SCI and estimated their work in about CHF 5,227 per month (62,732 per year) [27]. In the absence of family caregivers, and following the current long-term care law in Switzerland, these values should be covered mostly by the health insurances, social insurances, and with out-of-pocket payments, with important implications for the Swiss health and social systems but also for the financial situation of the households [27].

In most of the existing studies, the economic value is estimated by computing the costs of replacing the work of family caregivers with a market substitute, method known as proxy-good method. Nevertheless, defining what is the closer substitute is not simple and depends on how long-term care is organized in each county. There are few studies that estimate the economic value of family caregivers by the opportunity cost in the labor market [28, 29]. This happens because gathering data on labor market outcomes is more challenging as it requires information before and after a family member became caregiver. Existing studies overcome these challenges by comparing the work status of family caregivers to their counterparts in the general population, and monetize their work using wage rates from skills and unskilled labor [28, 30, 31]. In spite of all different methodologies, all related studies concluded that the work undertaken by family caregivers is worth many times more than what is currently spent on long-term care. The contribution of our study is that we have comprehensive information about the working situation of family members before and after they became caregivers. Also, as SCI is mostly the results of an accident, the needs for care constrained the working decisions of family members, and not the other way around. This characteristics allowed us to identify the adjustments family members undertook in their working situation to become caregivers without additional assumptions. 

To undertake the role as caregivers, family members of persons with SCI reduce their working hours by about 23%, or 8.4 h per week. This represents a decrease in income of CHF 970.8 per month (CHF 11,650 per year), with significant variation by the caregivers’ characteristics. When disaggregating the results, female caregivers, older caregivers, and caregivers with lower education reduced by more their working hours, as a clear indication that their opportunity cost in the labor market is smaller, i.e., men, younger and higher educated family members have, on average, higher incomes, which makes it more costly for them to reduce their working hours. Also, caregivers of persons with tetraplegia experience the highest decrease in their working hours (40% reduction), with a reduction in their income of about CHF 1736. Even when the analysed data was collected between 2017-2018, we consider our estimates hold today because the macroeconomic factors associated with the Swiss labor market, such as inflation and unemployment rates, have been quite stable [35]. Nevertheless, if interest rates hikes and positive inflation become a common reality, the estimated income losses would be adjusted. 

Compared to related studies, our results show that in Switzerland, highly burdened caregivers, as is the case of our sample, are less likely to quit the labor market. Instead, family members are more likely to reduce their working time to undertake their role as caregivers. This is reflected in the small unemployment rate reported in the sample, but also in the number of family members that reported that caregiving did not affect their working conditions. This result has potentially two explanations, one is given by the characteristics of the Swiss labor market, where part-time jobs are common, especially among women. In fact, after the Netherlands, Switzerland is the country with the highest number of people employed in part-time jobs in Europe [36]. The second explanation is given by the range of possibilities Swiss employers offer to employees to combine working with caring time, like unpaid holidays, compensation times, caring days, among others. Interestingly, after the COVID-19 pandemic, this observed flexibility of the Swiss labor market is being expanded to groups and to areas where it was unusual. In fact, remote work is rapidly increasing, as well as part-time work, especially among men [35]. This change may have important implications for those households with caregiving responsibilities, as there would be more than one person in the household who can undertake with caring responsibilities. Nevertheless, even when this change is important, significant shifts on the share of caregiving tasks, and how much this will impact the participation in the labor market of family caregivers need more time to be evaluated. 

From a societal perspective, the effects in the labor market also represent a productivity loss for society, and should be contrasted to how much it would cost to replace the work of family caregivers with a market substitute. In this way it is possible to estimate what is optimal for society, and identify potential areas of action in the long-term care law. In fact, a parallel study, using the same sample, estimated that replacing the work undertaken by family caregivers with professional home care would cost, on average, CHF 5,644 per month (CHF 62,732 per year) [27]. This value is 5 times higher than the estimated productivity loss in the labor market, which implies that family caregivers represent important savings for the society [30]. In fact, in the absence of family caregivers, it is very unlikely the Swiss health and social system can cope with the increasing needs of care as the rise of people facing disability and requiring care is estimated to dramatically increase.

Nevertheless, our estimates should be taken carefully as additional costs and benefits of caregiving are not included in the valuation method [20]. The estimated opportunity cost can be seen as an underestimation of the total value of the work undertaken by family caregivers, as we only considered paid work, and disregarded leisure time, and unpaid work, which are the areas that family members reduce to take over their caregiving duties [19, 22, 37]. In fact, our results show that family members do not reduce their working time 1:1 compared to caregiving time. The reduction in working hours is three times smaller than the reported average caregiving time (27 h per week). This implies family members add caring responsibilities to their existing work, with potentially detrimental effects on their health over time. In fact, overly burdened caregivers are more likely to give up their caregiving duties, and send their family members to nursing homes, a situation that is not always optimal for the cared-for person.

Thus, health and social systems need to find ways to support family caregivers as substitution of their work is not desirable neither from the financial perspective nor for the wellbeing of the cared-for persons [38]. In this matter, there are at least two important points to consider. The first one is the immediate urgency that economic evaluations include the role of family caregivers to ensure that their needs are taken into consideration. Some systems support the role of family caregivers through cash reimbursements for care activities, counseling, and complementary professional home support [39], also, some systems offer the provision of retirement funds and career benefits [40].

Finally, a more long-term strategy is for the health and social systems to shift their focus to the provision of rehabilitation for persons facing disability. Rehabilitation aims at improving functioning, which also implies that people become more independent. Therefore, rehabilitation, while directly targeting the person facing disability, also improves the living situation of family caregivers, as the needs of care are reduced. More investment and research in rehabilitation could improve the quality of life not only for the individual with SCI but also for their caregivers, leading to more productivity for the economy in general.

Some limitations are worth mentioning in light of the results. First, because of the lack of data, some assumptions were made to calculate the salaries for family members who worked before becoming caregivers. All the assumptions followed a conservative approach; thus, our results are likely to underestimate the estimated opportunity cost. Second, the questionnaire targeted only the primary family caregivers and excluded all other sources of support from other family members. This again implies our results may be an underestimation of the opportunity cost in the labor market, as other family members may have also been affected in their working decisions to support the person in need of care.

In addition, the questionnaire had a total of 138 items, some of which required detailed information. The length and complexity of the questionnaire may have discouraged caregivers experiencing high levels of burden, a group that may also face the most drastic effects in the labor market. Moreover, the questionnaire was available in the three Swiss official languages, German, Italian and French, which may have excluded an important number of non-Swiss caregivers. In fact, Switzerland has an important number of immigrants whose mother tongue is none of the official languages.

In reference to the opportunity cost method. On the one hand, it only considers the forgone income of family caregivers and disregards the benefits that being a caregiver can convey, for example, the better relationship with the care recipient and the positive feelings that helping a loved one entails [9]. On the other hand, in this study, the opportunity cost does not consider the leisure and personal care time that is displaced because of the care activities of the primary family caregivers and of other family members providing care [41]. This reduction in self-care time could lead to negative health effects, for example, less sleep time [20], bodily pain, fatigue and less vitality, which translated into increasing health care costs for family caregivers [42]. Additionally, this method underestimates the value of the work performed by women and elderly because of lower wages in the labor market [21].

Despite all of the mentioned limitations, this study provides a valid approximation of the costs that SCI primary family caregivers have in Switzerland. Even though it is an approximation, it is useful to have a monetary estimation of the costs that should be considered instead of taking informal care as a free or voluntary resource [38]. In our study, however, we obtained information on the work situation before and after being a caregiver for the same person, and we compared the same caregiver at two different times. Due to the difficulty in obtaining this information, most related research depends on income estimates based on educational levels, average salaries, and the patient’s severity; in this study, however, we were able to use the reported caregiver wages, which is a much accurate approximation.

Family caregivers of persons with SCI reduced, on average, 23% of their working time to undertake their role as caregivers. This is almost 4 times fewer hours than the time family members spent on caregiving duties. This implies family members put caregiving tasks on top of their existing responsibilities, with potential detrimental effects on the health and well-being of themselves and the cared-for person. Thus, the estimated numbers should be seen as an underestimation of the total value of the work performed by family caregivers.

From a societal perspective, the role family caregivers play in long-term care translates into important savings for the health and social systems as professional home care is expensive. Thus, replacing their work is neither optimal nor sustainable. Nevertheless, it is essential to find ways to support and compensate them. The economic evaluations of their work provide a range to define compensation measures to keep family members involved in the caregiving process when desirable. The estimated income loss can be seen as a lower bound reference for compensation, and the cost of a market substitute, the upper bound reference for compensation.