Intergenerational familial care: Shaping future care policies for older adults

Introduction

Welfare state arrangements have been classified according to different typologies, but the most established ones draws on the work of Esping-Andersen ¹ and groups them into three regimes (for other regimes, please refer to Ferrera ² and Saxonberg ³ ). Liberal regimes (e.g. United Kingdom) provide low benefits with strict eligibility criteria, and citizens are encouraged to buy additional insurances or enrol into supplementary pension schemes from the market. Social democratic regimes (e.g. Sweden) are tax-financed and are generous in terms of both benefits and services provided, with the private market playing a minor role. Conservative regimes (e.g. Germany) are less universalistic than the former. They link social benefits with participation in the labour force and thus incentivize the persistence of the male-breadwinner model, since few services are provided to help reconcile female employment and household duties. ⁴ The presence of different regimes combined with further particularities of single countries suggest how welfare state arrangements differ substantially in terms of their generosity and the kind of support provided (benefits in cash vs benefits in kind) to the older population. Such differences, in turn, have a significant influence on how informal care is provided by adult children to their ageing parents, who may receive care in an institutional setting and/or at home. For example, Haberkern and Szydlik ⁵ found that informal support is most prevalent in countries where filial piety is a legal duty of the adult child (e.g. southern and central European Union (EU) countries). This is connected to the fact that in southern Europe long-term care (LTC) services are very limited, thus requiring intensive caregiving at home from family members. On the contrary, Verbakel ⁶ reported that in Scandinavian countries – where LTC is more extensively available – adult children provide more frequent informal care, but of a less intensive nature.

Indeed, there is a close connection between welfare policy, the norms of a given society and the balance between formal and informal care therein. Some studies, for example, have reported stronger parental responsibilities in the North West EU countries, ⁷ whereas filial responsibilities are stronger in the South East EU countries, two factors which influence the welfare arrangements concerning care for older persons. ⁸ Against this background, it is often discussed whether welfare state policies have a substitutional or complementary effect on the support received by the older adult from family and friends. ⁹ For example, with the enactment of policies to support older persons in the United States (e.g. Social Security, Medicare, and Medicaid), scholars concluded that the cultural norm of society towards filial piety has weakened. ^10,11 It is also underlined that the increased role of the state has given adult children (particularly women) greater opportunities to strive for a career along with a family life. ^10,12 Another study reported that services from the welfare state enable children to choose what type of support to provide to their parents. ¹³ Given the delicate interaction between welfare policies and care dynamics, reforming care arrangements has always been a complex policy and ethical matter. Finding the balance between informal family care and formal professional care has fundamental implications for the ethics of caregiving, because policies are often at the root of institutional constraints that cause moral distress. ¹⁴

The goal of this paper is to examine how research concerning intergenerational familial relationships (IFR) can inform future care policies to reshape the balance between formal and informal care. In this context, we refer to informal care as the provision of ‘support to a family member, friend or acquaintance with a chronic illness, disability, or other long-standing care need due to ill health or aging’, which is ‘typically provided on a voluntary basis, arising from a priori social relationship, and without financial compensation or specific training’ (p. 1106). ¹⁵ Creating a way to support the elderly population through a combination of formal and informal care is a fundamental component of the overall welfare arrangements in a given society. However, this is challenging not only because of the growing needs of the elderly population, but also because regulating care-related matters forces confrontations between moral reasoning (and thus an ethic) based on rights and principles ¹⁶ – predominantly characterising formal care – and one based on care and how people feel and live ¹⁷ – more typical of informal care. In this respect, we argue that building on the studies on IFR may offer an important framework to tackle this relevant care related policy question that impact all healthcare professionals working with older persons as well as their informal caregivers.

In this paper, we begin by outlining why reforming the care structure is difficult but necessary, both given demographic changes and their effect on current policies of support for the elderly population and because of the ethical concerns that an improper balance between formal and informal care raises. We focus on Switzerland as a case study to present the challenges faced by welfare states. In this respect, we then argue that a thorough analysis of the literature concerning intergenerational relationships within a family can provide a useful perspective to redesign this balance. We thus bring together gerontological literature on IFR to tease out its three key dimensions. Finally, drawing from our analysis of IFR, we offer recommendations to help shape a sustainable balance between formal and informal care arrangements for the elderly population.

Challenges of balancing formal and informal care: between policy and ethics

The situation of Switzerland is illustrative of the difficulties that many western welfare states experience with respect to organising a sustainable care structure. One of the greatest challenges in this respect is posed by drastic demographic changes. Just like in the rest of Europe, where the average proportion of older adults (65 years and older) has been steadily increasing (19% in 2018), ¹⁸ in Switzerland this proportion has reached 18.3% according to 2017 data. ¹⁹ This is not surprising, since life expectancy at the age of 65 is 22.5 years for women and 19.7 years for men. In absolute terms, this means that, out of 8.4 million permanent residents, around 1.5 million persons are 65 years and older. An important consequence of this demographic configuration is that the old-age dependency ratio stands currently at 1:3. This implies that a shrinking younger generation has to pay more into the social security system for a growing older generation, and that a diminishing number of younger adults are available to care for older relatives or the elderly population in general.

On top of demographic changes, another threat to the current care structure is how formal care is provided. Traditionally, in Switzerland, formal care for older persons has not been supported by a package of specific old-age benefits, but through the enlargement of pre-existing schemes as to (partially) cover old-age care. The mandatory basic health insurance extensively covers all essential illness related needs in old age, ²⁰ whereas LTC needs associated with old age rather than sickness often have to be paid out-of-pockets and the level of LTC services varies geographically. ^21,22 The financial burden that having to pay (either through insurances or out-of-pocket) for old-age-related need entails has traditionally been alleviated by the generous three-pillar pension system – old-age and survivors insurance, occupational pensions and individual providence funds. Part of this pension system, however, is now under pressure (due to poor ratio of beneficiaries to working persons) and its future sustainability is at the centre of a complex fiscal reform. ²³ If sustainability is achieved at the expenses of the generosity of pension benefits, the elderly – especially the poorest ones – risk having to request more informal support from family carers. This, however, is ethically troubling for two reasons. On the one hand, it forces poorer families to rely greatly on informal care, even when family history might be marked by conflict and ambivalence (see below). On the other hand, it adds on the pressure of future generations of adult children, who will both need to provide extensive informal care, and remain involved in the workforce to compensate for the high old-age dependency ratio.

The pressure of demographic changes combined with the limits of LTC and pension schemes calls into question the current balance between formal and informal care, a policy issue with profound ethical implications. Of particular ethical concern is the question to what extent we can expect of informal caregivers to cover the needs that formal care cannot meet. When it comes to caring for older persons, it is often their spouse and/or their adult (female) children who provide much needed support and this type of informal care already plays a significant role. ²⁴ Overall, it is estimated that there are 330,000 informal caregivers in Switzerland who provide regular care to someone in need, ²⁵ while another study estimated that 1 in 20 person is an informal caregiver. ²⁶ Given the amount of care that is already provided in an informal way, it is ethically relevant to inquire whether it is acceptable for a welfare state to silently accept that many caregiving tasks are performed with none or little (monetary) recognition. In economic terms, it has been estimated that 63.8 million hours of support were provided by informal caregivers to adults in need of support in 2013, equivalent – if payed – to 3.5 billion CHF (3.3 billion EUR). ²⁷ On the other side, compensating informal care also might raise its own set of ethical concerns, especially if underpayment ends up subsidising a form of cheap labour. ¹⁷

Another ethically relevant question is whether it is fair to ask informal caregivers to perform an increasing amount of tasks, when they face many challenges, from being stretched between competing roles, to not being able to fulfil the caregiving demands, and thus suffer from caregiving burden. ²⁸ Furthermore, caregivers are confronted with underdevelopment of respite opportunities and a lack of knowledge of how to access the available ones. ^{28 –30}

Third, there is an ethical issue about gender. Studies report that caregivers provide support for an average of 5 years ^30,31 and that parents tend to receive the bulk of support from their female child. ^31,32 Although more women work today than five decades ago, caregiving still remains a female activity, both with respect to the older and the younger generation. ³³ In consequence, overreliance on informal care implies indirectly also a perpetuation of gender imbalance.

Finding an ethically acceptable balance between formal and informal care can substantially benefit from research on IFR. Reviewing such literature can both offer suggestions for policymaking and gain insights on how to ensure that expectations of different familial generations in terms of care duties are matched.

Intergenerational familial relationships: identifying diffent dimensions

In this section, we provide an analysis of IFR using a critical literature review according to the typology proposed by Grant and Booth. ³⁴ Our search of the relevant research repositories ³⁵ resulted in including a total of 26 theoretical manuscripts on IFR. ⁱ We did not capture empirical papers, because our purpose was to synthesise theoretical literature concerning IFR and why generations support one another. As the aim of a critical review is to ‘go[…] beyond mere description of identified articles and include[…] a degree of analysis and conceptual innovation’ (p. 93), we believed that this type of review would be the most suitable to our aim. ³⁴

After retrieving the relevant theoretical literature on IFR, we analysed the papers and classified them into three categories based on their content: ‘ethical’, ‘theoretical’ and ‘practical’. Briefly, under the ethical dimension, we included those papers that dealt primarily with the moral/ethical reasons for why different generations with a kinship tie support one another. For the theoretical dimension, we relied on those papers that described the different apparatus developed to analyse caregiving and support between different family generations. Practical dimension comprised the literature tackling primarily those external factors that influence intergenerational familial caregiving. We acknowledge that our way of presenting the content of the review is subject to a certain degree of discretion and that the distinction between the categories is arbitrary. Hence, the categories may interact with one another. However, we opted for such categorization both to encapsulate the content-rich literature in a concise manner and to succintly condense the diverse nature of the issues tackled therein.

Implications for care policy

Considering the challenges of the welfare state in meeting care needs of the elderly population and the ethical questions that reshaping the balance between formal and informal care raises, IFR literature offer a useful perspective to inform policymaking. Based on our critical review, we draw two exemplary recommendations from the perspective of IFR.

First, the IFR perspective helps understand that informal care is provided in the midst of intergenerational ties, which develop over time and cannot be fully encapsulated by static dyadic conceptions such as caregiver versus care-receiver. With formal care, the roles of caregiver and care-receiver are neatly defined and separate. On the contrary, the situation is particularly fluid with informal care. Adult children providing care to their parents have often previously received care from their parents, who are now the care-receiver, and they may have benefitted from the help that their parents have given to the grandchildren. ^36,38 In line with the perspective of exchange and thereby reciprocity illustrated above in the ethical dimension, ^36,41 IFR are characterised by the fact that they are long-standing relationships where giving and taking alternate each other and the same person might often switch between the role of caregiver and that of care-receiver. Moreover, as highlighted by the theoretical apparatus of conflict and ambivalence, ^47,49,55 relationships between family members can also be characterised by lack of solidarity and caregiving (or care receiving). The relationship between caregiver and care-receiver is indeed a very delicate one, which can generate mutual care when it is positive, but also mutual harm when it is not. The combination of those external factors mentioned above – such as inheritance norms – with personal experiences might thus create a multitude of different dynamics within a family, so that flexibility with respect to the regulation of informal care appears necessary, especially to downsize the ethical concern of over-burdening informal caregivers. On a policy level, this has two implications.

(1a) If a welfare state decides to support the existing network of informal care within families, policies should promote flexibility for the family caregiver. For example, taking time off from work to perform informal care duties should be possible – under certain conditions – not only for the adult children (sons and daughters) of an old person in need of support, but also to other people practically involved in familial ties (i.e. grandchildren in working age). Further, where other members (e.g. nephews, nieces, sons-in-law) are willing to be involved in the caregiving for an older adult in the family, their support should be acknowledged as well. The aim would not primarily be to financially compensate family members, but to recognise that informal caregiving is a contribution that is highly valued ⁶⁶ so that both gender feel equally incentivised to carry through this responsibility. Different countries in the EU already have policies that allow family members to take leaves when they provide informal care, ⁶⁷ but these should be strongly reinforced. This would also facilitate the prevention of potential moral distress for informal caregivers, who may feel that caring for their older relatives is the morally right thing to do, but lack the opportunity to do it because of external factors. Whereas moral distress is often studied in the context of healthcare and formal care, ¹⁴ the impact that it can have to informal caregivers is largely underappreciated. Flexible policies permitting involvement of other next-of-kin in the informal care are valuable, especially in those cases where the relationship between adult children and their parents is marked by past conflicts.

(1b) Welfare states with a weak system of formal care structure – like Switzerland – must critically evaluate their ‘ageing in place’ policy, ⁶⁸ which idealises ageing at home and thereby places pressure to provide informal care. Within families there may exist experiences (e.g. negative family relationships, unavailability or inability of family caregivers, excessive pressures to become a caregiver felt by the adult female child) impeding a successful intergenerational caregiving of this kind, or making it highly harmful. Hence, policy initiatives that make different variants of ‘alternative ageing’ available at affordable costs are to be encouraged. This is not to idealise the value of ‘choice’ in terms of care options in old age, but to respond to the increasingly variant articulation of family relationships in current society. Potential policies might include assisted living housing for semi-independent older persons, co-housing where older adults of different capabilities live together and support one another, ^40,69,70 and possibility of shorter stays in nursing homes. ⁷¹ Alternative living experiments carried out in the Netherlands ⁷² where an older person and younger person cohabit might also be solutions to be evaluated at a national level.

Second, based on our review of IFR literature we suggest that care policy should consider promoting the idea of security as defined by Johansson and Sundström ⁶² when discussing the interplay between formal and informal care in Sweden. In their view, promoting security would not entail offering ubiquitous formal care-related services and structures (e.g. respite care, nursing homes), but to arrange them so that they are reliably and swiftly obtainable when needed. This would also mirror the conception of IFR put forward by the apparatus of ambivalence, in that it would help to accommodate both the negative and the positive poles that characterise relationships between family members. On a pragmatic level, this has three implications.

(2a) Policies should ensure that informal carers, if they are available and ready to fill care needs, they also have adequate support from formal care structures to ensure their well-being and for them to not feel (unfairly) burdened. This could, for example, take the form of respite services readily available. Respite services could include (a) publicly funded senior centres/adult day services that engage older participants in social activities during working days and provide them with a space to get together with their peers; (b) meals on wheels services that ensure that older adults who are unable to cook, cannot and do not wish to attend adult day services or have financial limitations receive their daily meals on time; and (c) community services coordinated and funded by public resources and manned by local volunteers, who help with housework, grocery shopping and who can also provide company. ^{73 –77}

(2b) Since informal caregiving takes an enormous toll on the mental and physical health ^{78 –80} of single family members and can thus put a strain on the family as a whole (e.g. young children might feel neglected by their parents when the latter care for their older relatives), support for families as a whole should be in place. This would include the need for an efficacious information campaign on the respite services discussed above, as well as psychological support, and the possibility to receive education and training on how to balance efforts for different family members and with care for oneself.

(2c) As studies have noted that legal obligation to care for an older family member influences caregiving relationships, ^5,59,60,65 welfare state policymakers must analyse their existing strategies and evaluate how such obligations influence the way informal caregiving is provided (or not provided) in their settings and the reasons why formal caregiving is sought (or avoided).

Conclusion

In this paper, we explored how setting a balance between formal and informal care concerning the older population is an ethically relevant issue and a difficult matter for policymaking in current society. Given the intergenerational and familial traits that caring for the elderly entail, we have provided an analysis of IFR literature to readdress the changes in care policies that affect older adults. We then proposed two suggestions concerning policymaking with respect to caregiving for the elderly population drawing on our review of the literature. In particular, we argued that policies should be based on overcoming the perspective of the static dyad adult-children/caregiver versus older parent/care receiver, with a broader focus on the whole network of family members (potentially) involved in the provision of care. Doing so addresses ethically relevant concerns surrounding solidarity, responsibility, reciprocity and moral distress. Second, we suggest to develop a policy that reinforces the sense of security among informal caregivers and older adults, in the sense that supportive formal services would be available when in need. Such a policy would address the ethical concern of overburdening informal caregivers and caring for their specific needs. Since our recommendations are broadly sketched, we encourage further explorations of these issues and the deployment of IFR as a useful perspective to develop policy and continue research to find a balance between informal and formal care and address the ethical issues thereto related.