Abstract
Policies and services to support informal caregivers vary considerably across countries. This paper examines the role of caregivers and how perspectives on that role may influence the availability of benefits and services in three countries that differ considerably in their care systems - Sweden, Ireland and the United States. We developed a nine-dimensional framework for examining differences, including policies and how the role of caregiver is conceptualized. We found differences in the three countries in how services are organized, which reflected assumptions about the caregiver role. There were also similarities in the three countries. Caregivers held an ambiguous position within each social system and there was little concern for equity in the delivery of support services. Increased clarity about the role of caregivers may facilitate development of policies that more effectively meet their varied needs.
Introduction
People have always cared for older family members who need assistance with everyday activities. But with population aging, changing family structures, and growing concerns about the economic cost of long-term residential care, the support of community-based informal caregivers has become a prominent policy topic. Concerns about whether countries will have resources to meet increasing demand for services for older persons focus on several societal developments (Wieczorek et al., 2021). These include increased labor force participation of women, changes in retirement policies and pension age, lower fertility rates, rising childlessness and higher divorce rates. Caregivers are the lynchpin to the success of community care policies, yet how informal care is defined and perceived remains somewhat of an enigma (Twigg, 1989; UNECE, 2019; Zigante, 2018). Furthermore, policies and services for caregivers vary considerably across countries. Much can be learned by examining cross-nationally how caregivers are perceived and supported in different health and social care systems and the respective strengths and weaknesses of such systems.
This paper examines the role of caregivers and the actions governments take to best support this role and mitigate the adverse impact of informal caring including caregiver burden. We focus our analysis on three countries, Sweden, Ireland and the United States. These countries were chosen partly based on the collaboration among the three authors and partly because they have dramatically different approaches to social and health policy. There are some obvious features such as in size of the populations of the three countries, which may contribute to differences among these countries, but we felt other factors might also be important in accounting for their approaches to caregiving. To examine these differences, we have developed a nine-dimensional policy framework and use that tool to compare how caregivers are supported in the three countries and to identify strengths and weaknesses of the support systems in each country. This is an important research and policy topic given the current drive by many Western governments to reconfigure services for care of older people by shifting the balance away from residential to community settings. Our construction of the framework has been shaped particularly by four seminal papers on caregiving, namely: the works of Twigg (1989), Cass and colleagues (Cass et al., 2014), the United Nations Economic Council for Europe Working Group on Aging (UNECE, 2019) and Wieczorek et al. (2021). We use the framework to address the role of caregivers and in so doing touch on issues affecting care recipients.
For the purposes of this paper, we use Triantafillou et al.’s (Triantafillou et al., 2010) definition of informal caregiving to mean any help, usually unpaid, and provided mainly by close relatives, friends, or neighbors to a family member or friend with functional limitations. Informal caregivers provide a wide range of tasks. They can also be responsible for managing complex medical procedures at home (Wieczorek et al., 2021).
In a ground-breaking paper, Twigg (1989) argued that how social care agencies conceptualize their relationship with caregivers affects service delivery and support. Twigg presented three frames of reference namely: caregivers as resources, caregivers as co-workers and caregivers as co-clients. These frames are not explicit policy statements, but rather reflect the implicit meaning that policies and programs give to the caregiver role. Caregivers as resources is drawn from traditional kin expectations that families are expected to provide care. The role of service agencies in this frame is to fill in gaps in care, but not to substitute services for family care. Service organizations may seek to understand the caregiver’s role but they are not obliged to meet the caregiver’s needs. The goal is to support caregivers to enable them to maintain or increase informal care. Caregivers as co-workers has goals of maintaining informal care and enhancing caregiver well-being. The focus on caregivers’ well-being is a positive aspect, but Twigg notes that this perspective can potentially lead to tensions between paid workers (formal caregivers) who draw on their professional knowledge and training and informal caregivers whose perspective is based on their unique experiences and history with the care recipient. For the third framework, caregivers as co-clients, the main policy and service goal is explicitly to reduce caregiver burden. Twigg notes the potential conflict between helping caregivers but in the process undermining the care receiver’s autonomy. Though focused on the interaction of social agencies and informal caregivers, Twigg’s framework can be extended at a national level to characterize policies that support caregivers as well as biases that deter developing more effective assistance.
Twigg (1989) also observed that caregivers hold an ambiguous position within the social system. Their role is emerging, evolving, informal and not systematized. One source of ambiguity is that definitions of caregivers vary within and between countries. Likewise, there is no consensus on whether services should be provided only for the care recipient or consider the needs of caregivers and if so, whether the caregiver should meet eligibility criteria (e.g., financial, emotional) before receiving services. There is often no consideration of equity, that is, that policies and services should address needs equitably without gaps that leave some caregivers and care recipients without adequate resources or assistance. These are topics that this paper attempts to address.
A second seminal work that has influenced our thinking is the paper on caregiving co-authored by Cass et al. (2014). In that paper, the authors take a comparative look at how support for caregivers of older people with disabilities has developed in Canada, Australia, and the UK. Based on research and policy analysis, they developed a useful framework for describing policy features with four core elements: (1) financial support for caregivers to prevent financial hardship; (2) incentives for reconciling work and care responsibilities; (3) services for care recipients and caregivers and (4) caregiver recognition and rights. Cass and colleagues suggest that in all three countries, caregivers’ organisations and other NGOs have played significant roles in shaping and progressing the debates about policy and practice for caregivers. They argue that it is time to move beyond debates about whether the state or the family should meet growing care needs, and develop instead sustainable policy options to ensure that everyone providing care can be supported.
The third paper that influenced our thinking is the UNECE Working Group on Ageing, report (2019), which compared policies and challenges for caregivers across several European countries, the United States and Canada. Countries were placed into four care regimes: (1) Universal where families have a right to receive formal care; (2) Mixed solidarity where caregivers have some specific rights such as respite care; (3) Family-based where support for caregivers is moving slowly toward mixed solidarity; and (4) Emerging where there is still little recognition of informal caregivers. Not surprisingly, countries with a strong history of government programs (Nordic countries, the Netherlands) were in the universal category and provided more services that benefited caregivers. The report also identified omissions in support for caregivers in all the countries reviewed. The authors concluded that there was little recognition of the value of the work of caregivers. In particular, barriers existed to providing financial or other assistance to caregivers who were providing care while working in the labor market. Support services such as adult day programs or home care that can help caregivers remain employed were not widely available or affordable and these services were often not flexible in their delivery. They also found that little attention was paid to the physical and mental health strain experienced by caregivers, except as a means to an end of helping the dependent person.
The fourth seminal paper that has shaped our thinking is the recent European policy overview of informal caregiving by Wieczorek and colleagues (2021) in which the authors identify the challenges currently facing European governments vis-à-vis the support of caregivers. They argued that although informal care may appear free, opportunity costs exist that need to be taken into consideration. Also, across Europe disparities in the level of support of caregivers need to be addressed. The authors of this paper propose three core areas for government intervention to support caregivers: (1) cash benefits or allowances; (2) labour market policies, such as paid leave and (3) more flexible working arrangements and improved service provision such as respite, counseling, and training.
How Caregivers are Perceived and Supported Across Three Different Countries.
Informal Caregivers in Sweden
In Sweden, informal care is described as unpaid care, help and/or support provided by a relative, and/or others like a friend or neighbor (National Board of Health and Welfare, 2020). Sweden has a population of 10 million people and every fifth person is 65 years or older (Statistics Sweden, 2021). About 20% of all adult Swedes provide informal care, most of them to an older person (National Board of Health and Welfare, 2021). The prevalence of informal caregivers is estimated to be two to four times greater than formal care. This does not correspond to the image most nations hold of Sweden’s Welfare state or indeed the views that many Swedes themselves hold of their “from cradle to grave” welfare programs (Johansson & Sundström, 2006). The balance of care between families and state has been changing. Caregivers today are doing more care of older people than before (Johansson & Sundström, 2006; Johansson et al., 2011). This is due to cuts in public services, and more extensive family ties (Sundström, 2019).
Despite these changes, long-term care in Sweden is universal and it is the duty of the public sector and not of relatives, to meet the needs of older people who need support and care as they age (see Table 1). The Social Services Act (SFS. 1980:620) states that “the social service of society shall, based on democracy and solidarity, promote economic and social security of the people, equality in living conditions and active participation in society.” People in Sweden have the right to receive care regardless of income and any informal care provided must be voluntary (Table 1). However, there are implicit normative expectations for informal care based on the relationship of the caregiver and the person who needs support. Specifically, a spouse is expected to undertake household chores and the boundary between voluntary and involuntary care is difficult to draw. Indeed, many relatives today feel that they never get asked but are expected to take care of their loved one (Swedish Family Care Competence Centre, 2019).
Another perspective derived from older Swedish traditions is that it is the woman’s responsibility to take care of the household and the family. Among spouses, however, there seems to be no difference between the amount of care provided by men or women (Sundström et al., 2018). Retirement and the time “freed up” with it may contribute to a sense of greater responsibility to care for one’s partner, as well as similar expectations among policy makers and service providers that retired spouses will care for their partner. Use of formal services also may depend on perceived quality of care of those services, and whether relatives feel safe in handing over care of their loved ones to the community (Swedish Family Care Competence Centre, 2019). It is therefore difficult to answer yes or no to the question of expectations of family members regarding informal care, since there are no explicit expectations but there are indeed implicit expectations (Table 1).
Since 2009, Swedish municipalities (of which there are 290) have been mandated to offer support to caregivers (Table 1). According to the Social Services Act, “support for caregivers must be characterized by individualization, flexibility and quality.” Municipalities differ in size and budgets and hence the range of support for caregivers and care-receivers can differ considerably. Services are not a general right and the needs of the individual determine the right to assistance. Depending on the municipality, services to support caregivers may include home help, respite care at home, home health care, security alarms, transportation services, day care centers, care homes, and psycho-social support. These services may also benefit the care recipient. There are also services designed to improve the caregiver’s situation, particularly caregivers for persons with dementia. Examples include support groups, meeting places, initiatives from health care in the form of care or rehabilitation initiatives, educational programs, and psychosocial support programs (National Board of Health and Welfare, 2017). Indeed, it is sometimes noted that caregivers can receive more psychosocial support than what the person living with dementia receives. Dementia is sometimes popularly referred to as the “illness of the relatives.” This type of approach risks overlooking the person with dementia’s need for support (Bielsten, 2020), and as Twigg (1989) observes, the potential of conflict between helping caregivers but in the process undermining the care recipient’s autonomy.
In Sweden, there is minimal financial assistance for caregivers of older people (Table 1). Caregivers who are employed cannot take paid leave, except for burials and similar needs. An employer can grant leave but is not obliged to do so. There is only one financial support program for caregivers, “Närståendepenning,” which is for a relative or friend of someone who is seriously ill, usually in the final stages of life. There is also a care allowance, “Omvårdnadsbidrag,” which is available in some municipalities, but it is difficult to find information about it and many people do not know that it exists. In rare cases, a relative can be employed and paid by the municipality as a professional formal home helper, usually where the municipality cannot offer adequate help, for example, due to language differences (Swedish Family Care Competence Centre, 2021, personal communication).
The main financial support is that the cost of services for care recipients is based on their income and means. There is also a ceiling on out-of-pocket payments. In 2021 the maximum amount paid by the individual was 2138 SEK per month (US$ = 228; Euro = €207). This maximum payment also applies to payments to private care providers approved by the municipality. There is also something called a reserve amount: this means that the cost of care is reduced to ensure that the care recipient can have a reasonable standard of living.
A National Dementia Strategy (NDS) was launched in 2018 (see Table 1). It is built on the notion of a standardized care-process and with the overall goal of equality in care for persons with dementia. Sweden also has national guidelines for the care of people with dementia (National Board of Health and Welfare, 2017). A National Strategy for Caregivers was recently launched in April 2022. One conclusion of the new Strategy is that the knowledge about the extent and quality of the support that municipalities and regions offer to caregivers is deficient. The Strategy also highlighted that caregivers find it difficult to navigate the system support and health care systems and to know what they are entitled to and what support is available (The Swedish Government, 2022). One reason for these difficulties may be that in Sweden people are covered by different laws depending on whether they are under 65 years or 65 years and older.
Unlike Ireland and the USA, Sweden does not have an extensive culture of volunteer work and advocacy, which may reflect traditional reliance on government programs. There are, however, non-profit organizations and advocacy groups that support older people, caregivers and people with dementia.
In summary, Sweden has a pronounced universal regime where care recipients and informal caregivers are entitled to support. There is a National Dementia Strategy and a National Caregivers Strategy for all informal caregivers. Sweden also has a relatively large range of services but is hampered by the fact that these services are offered unevenly across municipalities. There are also unspoken expectations, both normative and cultural, that family members should take care of older family members as much as possible. In line with Sweden’s high state support regime, caregivers do not fit into Twigg’s (1989) role of caregivers as resources but there is evidence that Sweden is moving towards that direction given the more extensive reliance on informal care. A better description of the caregiver role would be a combination of Twigg’s (1989) second role, caregivers as co-workers, and the third role, caregivers as co-clients (Table 1). This combination takes into account Sweden’s comprehensive welfare programs and the services provided by municipalities for support for caregivers’ wellbeing, though there remain significant gaps.
Informal Caregivers in Ireland
The vast majority of older people in Ireland live in the community and where necessary are supported by caregivers, usually family members. Ireland has a population of slightly more than five million people, with 19% aged over 65. In the Irish Census, caregivers are defined as persons who provide regular unpaid personal help to a friend or family member who has a long-term illness, health problem or disability (CSO, 2017). It is estimated that about 500,000 people in Ireland (about 12.5% of the total population) are caregivers (CSO, 2020). Many are middle-aged or older persons themselves, who provide care to their spouses or to their older parents or children (CSO, 2017). About half combine paid work with unpaid caregiving (CSO, 2017). Informal caregiving is a gendered issue in Ireland with about 60% of all caregivers being women. More than three quarters of caregivers report feeling stressed, attempting to combine caring with other family and work responsibilities (Family Caregivers’ Ireland, Royal College of Psychiatrists of Ireland & University College Dublin, 2019).
Despite women’s changing work roles in Irish society (Keogh et al., 2019), the normative, kinship and gendered obligation to provide care to a dependent family member remains strong (Citizen’s Assembly, 2017). Article 41.2 of the Irish Constitution (about which there has been long-lived controversy) states that a woman’s place is in the home (Bunreacht na H’Éireann, 1945). It may be no surprise therefore that the primary responsibility for the long-term care of older vulnerable adults, including people living with dementia, rests with the family and mainly with women. Historically this family responsibility for care has been emphasized in all the relevant government policy documents. It was also underpinned by Catholic social teaching and the principle of subsidiarity where it was assumed that the state only intervened in the private sphere of home in very exceptional cases. Accordingly, the Irish health and social care system is a mixed solidarity/residual model regime (UNECE, 2019) (Table 1) that is characterized by a low level of government expenditure on care services and a heavy reliance on family members as unpaid caregivers. This has led to the policy framing of caregivers as resources (Cahill, 2021; Twigg, 1989) with little protection offered to them against the myriad of financial, social, psychological and physical disadvantages they often experience (Teahan et al., 2021).
A National Strategy for Caregivers was first published in Ireland in 2012 (Table 1) and is currently being updated. The Strategy sets out government policy for those who provide care in an unpaid capacity. Its vision is that caregivers will be respected as “key care partners to maintain their own health and wellbeing and to care with confidence.” The Strategy focuses on actions that can as far as possible be achieved on a cost neutral basis. Although the Strategy purports to: “empower caregivers to participate as fully as possible in economic and social life,” many caregivers in Ireland feel invisible and forgotten (Pierce et al., 2021). Unlike Sweden, services in Ireland tend to emphasize supports for the person being cared for, as a means of supporting caregivers (caregivers as resources in Twigg’s typology) and there is no automatic entitlement or statutory right to services specifically for caregivers. In many ways, therefore, it could be argued that Irish health care policy is caregiver-blind (Pickard, 2001).
Despite the absence of caregiver-dedicated services, there is legislation in Ireland, the “Caregiver’s Leave Act,” that allows caregivers to take time off paid work to provide full time care to a dependent person (Table 1). During this leave, a “Caregiver’s Benefit” is available. This is a weekly payment for people who have made social insurance contributions during their work life (Cahill, 2021). The Caregiver’s Leave Act and Caregiver’s Benefit are available for a maximum period of 2 years. A half time Caregiver’s Benefit is also available to some full-time caregivers who are in receipt of another Social Welfare Pension or Benefit.
In recognition of caregivers with low incomes, a “Caregiver’s Allowance” is also available in Ireland (Table 1). This is a mean-tested income support for caregivers who are supporting people in need of assistance on a full-time basis. Unlike the Caregiver’s Benefit, the Caregiver’s Allowance is available for an indefinite period. It is possible for a full-time family caregiver who has completed 2 years on the Caregiver’s Benefit to transfer over to the Caregiver’s Allowance. Another potential source of financial support to caregivers is the “Caregiver Support Grant.” This is an annual payment of about €2000 (US$ = 2106) available to all eligible informal caregivers. There is widespread lack of knowledge amongst caregivers about overall entitlements for caring and poor uptake on some of these income supports. For example, as at July 2018, only 1.3% of all caregivers in Ireland availed of the Caregiver’s Benefit (Cahill, 2018).
Caregivers in Ireland are not currently entitled by law to government funded community care services, although this is likely to change in the coming years. A key potential source of support for caregivers is the home support scheme, formerly called the home help or home care package scheme (Keogh et al., 2018). These services can benefit caregivers and care recipients and include in-home care including respite, personal care such as assistance with activities of daily living and home help for assistance with domestic chores. This scheme, supported through general taxation, aims to assist older people to remain in their homes for as long as possible and to support informal caregivers. In 2019, the scheme provided care services to 53,000 people, 90% of whom were older persons and cost the Exchequer €440 million (O’Shea, 2021). An unfair post code lottery system operates in Ireland that in effect rations these services. People can apply for government subsidized long-term home care support, but wait lists are long and provision is largely dependent on the supply available geographically. Provision is also seasonally determined with more funding released during winter months and less at other times of the year (M. Pierce personal communication, Nov. 8, 2021). The absence of state support of long-term home care services or its very limited provision means that many family members have no option but to buy private care (Teahan et al., 2021; Walsh et al., 2020). The Health Service Executive and non-governmental organizations such as the Alzheimer Society of Ireland and others also provide out of home services such as day care or away from home respite care (Pierse et al., 2020). Overall, this hybrid Irish welfare state model significantly complicates policy-making. The government was due to pilot a new statutory home support scheme in January, 2020, but this has been delayed due to the Covid-19 pandemic.
In 2014 Ireland published its first National Dementia Strategy (DOH., 2014), a policy document mapping out a framework for the development of dementia care services over coming years (see Table 1). In this document the pivotal role that caregivers play in supporting the needs of people living with dementia was repeatedly highlighted. As part of its implementation, new dementia specific intensive home care packages (IHCPs) were delivered to a small select group of people with more advanced cognitive impairments. This new scheme provided high levels of funding and was intended to deliver a wider range of flexible personalized supports to informal caregivers (Keogh et al., 2018). Although this program was positively evaluated, the funding is now depleted.
Strong and vocal patient/client advocacy groups for older people exist in Ireland. Examples include Age and Opportunity, the Irish Senior Citizens Association, Family Caregiver’s Ireland and the Alzheimer Society of Ireland. These advocacy groups along with others play an important role lobbying the government for better income and service supports for older people and their caregivers. Some also provide unique illness-specific education, training and other supports for caregivers.
In summary, informal caregiving in Ireland is a gendered issue. Home-based services for older people and their caregivers are currently not provided on a statutory basis and it could be argued that support services are tokenistic with caregivers viewed as resources rather than as clients or co-workers. Strategies for supporting caregivers in Ireland include income support through cash benefits and allowances, labor market policies through caregiver’s leave and some in-home support services provided by government and non-government organizations.
Informal Caregivers in the USA
The USA is far larger than Ireland and Sweden, with a population of over 330 million people, including 54 million (16%) over age 65. A national survey conducted by the American Association for Retired Persons (AARP) and the National Alliance for Caregiving (NAC) (2020) identified 41.8 million unpaid caregivers for persons 50 years of age and older living with disabilities, 89% of whom were a relative of the care recipient. Most were providing care to a parent, parent-in-law or spouse. Sixty one percent of caregivers assisted their relative with Activities of Daily Living, and virtually all caregivers assisted with Instrumental Activities of Daily Living. Twenty eight percent of care recipients had a diagnosis of Alzheimer’s disease or other type of dementia. Using a composite scale of hours of care and ADL, 39% of caregivers were considered in high intensity care situations. Caregivers frequently report poor health, physical strain in providing care, and high emotional distress (AARP, 2020, AARP and National Alliance for Caregiving, 2020).
The cultural/normative expectation for informal care in the USA can be described as traditional (Table 1). Women provide the main bulk of care and wives and daughters are the most frequent caregivers (e.g., AARP, 2020, AARP and National Alliance for Caregiving, 2020; Wolff et al., 2018). This gendered emphasis is reflected throughout public policy. It should be noted, however, that husbands often assist their wives, and the number of sons caring for a parent is increasing (AARP and NAC, 2020; Wolff et al., 2006).
The USA health care system can be characterized as a mixed solidarity regime (UNECE, 2019). Medicare is a federal program that provides universal coverage for health care for older people and persons with disabilities. Long-term care services are for the most part not funded through Medicare. Instead, long-term care services that benefit care recipients and/or caregivers depend on a mix of federal, state, and local government funding, non-profit institutions, and private pay. States have latitude in what programs they will offer and how much state money will be allocated. As a result, where caregivers live determines the support that may be available (AARP, 2020).
The largest federal-state partnership is Medicaid. Medicaid was originally intended to provide health care for people with low incomes, but over time it also became the main payer for nursing homes and long-term care. Sixty-two percent of nursing home residents and 16% of other residential facilities have their costs paid by Medicaid (National Center for Health Statistics, 2019). Medicaid is “means-tested," that is, it pays for long-term care services for care recipients whose income and other resources are below a certain level (Table 1). Persons who are not eligible for Medicaid pay privately for nursing home care and other services. They can qualify for Medicaid if they spend down their assets, that is, paying with their own resources until their financial assets are below the eligibility threshold. For married couples, a caregiving spouse can retain a portion of the couple’s total assets and their primary residence, with the amount they can retain varying by state (Heiser, 2021). Nonetheless, the spend down requirement has considerable negative financial impact on spouses. The rules for Medicaid eligibility vary from state to state. Private long-term care insurance is also available but can be expensive and coverage of services can be limited.
States can offer services that help older people and their caregivers to remain at home through a program called Home and Community Based Services (HCBS). Services can include home care and adult day care. Funding is provided jointly by Medicaid and by the states. Eligibility is means-tested and requires that the care recipient would otherwise need institutional care. In other words, services are based on the care receiver’s condition and not the caregiver’s needs. Eligibility and services offered vary from state to state, and not all states offer the program.
The federal Administration for Community Living (ACL) operates the National Family Caregiver Support Program. This program provides grants to states to assist family caregivers, with the goal of helping older adults remain at home as long as possible. The program is available through local Area Agencies on Aging (AAA). The most recent data from ACL is from fiscal year 2014 and shows that 700,000 caregivers were served by Caregiver Support Programs nationwide (Administration for Community Living, 2021a). The most frequent assistance was in locating services. AAAs may also provide counselling and training for caregivers and respite care. Services are not means-tested but some programs give priority to lower income people.
These efforts represent a piecemeal approach to caregiving. There is currently no national strategy. Adequate funding, access to services, and coordination across agencies remain endemic problems. A proposal to create a national strategy, The RAISE Act (Recognition, Assist, Included, Support and Engage), has been sent to Congress (Administration for Community Living, 2021b). This bill contains many benefits and services for caregivers, but legislation has not been passed.
There is also no national legislation for financial assistance and workplace benefits for employed caregivers. The AARP and NAC report (2020) found that 62% of caregivers were employed at some point in the previous year. One half of the employed caregivers reported that their employer allowed flexible work time and time off as needed, but 40% said that their employer made no accommodations of any kind. Twenty percent of caregivers reported leaving their jobs (Rosalynn Carter Institute, 2021). Eight states have passed laws that require private companies to offer short-term paid family leave, including for caregiving.
In some states caregivers who are not employed and are eligible for Medicaid can be paid for caregiving (AARP, 2020). Many states, however, prohibit paying spouses, because the responsibility for care is seen as integral to the relationship (Murray et al., 2021). This prohibition against hiring relatives was eased somewhat in 2020 due to COVID (Murray et al., 2021).
Some states have programs specific for caregivers. The most extensive is California’s Caregiver Resource Centers (CCRC), a statewide program of 11 centers that provide free services to unpaid caregivers of individuals 18 years of age and older with a condition that impairs cognition or for persons over age 60 who need assistance with ADL. Services include caregiver assessment and education, short-term counseling, and respite care. Non-profit organizations across the country are also a source of caregiver services.
The USA has a national dementia plan. The stated goal is “bringing attention to and ridding the nation of Alzheimer’s disease and related dementias” (U.S. Department of Health and Human Services, 2020). There is limited attention in the plan, however, to improving current care of persons living with dementia, assisting caregivers or improving the workforce in long-term care.
In summary, traditional beliefs regarding family responsibility for care dominate long-term care policy in the USA. The predominant model is caregivers as resources (Table 1). The division of responsibilities between the federal and state governments is often confusing to consumers and inefficient. For people with limited means, the cost of care can be onerous. Pressure on politicians to keep taxes low also has stymied efforts to develop a more robust system of support for care-recipients and caregivers. Advocacy groups such as the American Association of Retired Persons, the National Alliance for Caregiving, and the Rosalynn Carter Institute have made progress in raising awareness of caregiving, but there is no consensus on how the country might move ahead to create a more equitable and accessible program of services for caregivers and care recipients.
Discussion
In this paper we used a nine-dimension framework to guide observations of policies and programs of care in three very different countries in order to help clarify caregivers’ roles and the extent to which governments support these roles. In all three countries, there is an implicit expectation that family members, especially wives and daughters, should provide care when an older family member becomes frail and dependent. These normative and gendered obligations appear to be stronger in the US and Ireland than in Sweden where it remains the duty of the public sector to meet the care needs of older dependent people. In Sweden, however, normative obligations and beliefs are reflected in the lack of financial support for caregivers who might need to leave employment to assist a family member. Drawing on Twigg’s (1989) model, we concluded that in Ireland and the US, caregivers are generally perceived as resources, while in Sweden they are more likely to be regarded as co-workers/co-clients or co-producers of care.
We rated the three countries according to the long-term care regimes proposed in the UNECE (2019) report and not surprisingly found different approaches. The Swedish model of welfare best reflects a universal care regime where Swedes pay high taxes but at least on paper, secure individual rights to support. The US has a mixed solidarity welfare regime of some government support and personal responsibility. Ireland was rated as a mixed solidarity/residual model, reflecting the low level of support for caregivers in several types of services and programs.
We have also identified common issues across the three countries that affect caregivers. The foremost commonality is that caregivers are viewed ambiguously by policy makers and social care agencies in each country. When discussing health care policy, there is generally agreement about what “health care” is and about goals for the patient. However, family caregivers, unlike patients, do not have a clearly delineated position in the health and social care systems in the three countries and are often considered as residual or secondary in resource allocation (Teahan et al., 2021; Twigg, 1989). Supportive services tend to focus on and favor the dependent person rather than the caregiver, except perhaps when it comes to dementia in Sweden.
Another commonality is that home care is a goal, in part due to concerns about the growing cost of residential care and in part because that is what caregivers and care-recipients prefer. Little attention, however, has been given to creating incentives for reconciling work and care responsibilities or to adequately incentivize family members to provide care at home. Such incentives could include income supports (available in Ireland), life course flexibility for working caregivers (more flexible start-stop work arrangements or adding money to caregivers’ pensions), free or low-cost day care and home care and other adequate financial support for caregivers. Incentives like these would need to be made available early in the care process, and not after caregivers are burnt out and actively considering placement.
Besides emphasizing home care, each country tries in other ways to control the overall costs of services and programs for caregivers and care recipients. By using the caregiver framework, we can see that these efforts create significant gaps in support of caregivers and care recipients that leaves some people without adequate resources or assistance. Ireland has some forward-looking policies that give caregivers paid time off from work to provide care, but at the time of writing, the country does not adequately fund home care and other services or place them on a statutory basis. In Sweden, there are some exemplar statutory programs for caregivers and care-recipients, though availability varies across municipalities and there are no incentives or encouragement for caregivers who are employed. The main source of support in the USA for caregivers is Medicaid, which is available only to persons with lower income. There needs in each country to be recognition that an aging population is a wonderful achievement but there are financial, social and emotional costs associated with long life. The challenge, of course, is finding ways of meeting those costs. It may be possible to offset some costs of services by helping persons stay at home longer, but cost savings will not always be possible. Debates over expanding services or remediating gaps typically focus on costs, but underlying the economic arguments are beliefs about caregivers’ responsibility for providing care and the perceived value of their efforts. In other words, barriers to improving the status and quality of life of caregivers are partly monetary, but these barriers also reflect how the caregiver’s role is viewed and the implicit ideology that is underpinning long-term care regimes in these countries.
There are different legal and cultural barriers to improving policies and services for caregivers in the three countries. Many Americans are opposed in principle to increasing government involvement in their lives, even when they will benefit from specific programs. In contrast many Irish people would hugely favor increasing government support in their lives by way of better services as they age (Teahan et al., 2021). In Sweden, many relatives and/or close friends choose to participate in care in order to be able to help ensure that care is given in accordance with the care recipient’s preferences. This may be especially important for the family when it comes to care of people with dementia where the symptoms are associated with challenges in communication.
Finally, another issue that affects each country is whether services should focus only on the care recipient’s condition or take into account the needs of the caregiver. Should all caregivers receive support or must they first demonstrate need as, for example, financial or emotional? Should factors such as work status, emotional resiliency, and the support they receive from family and friends be taken into account in eligibility for services? How the eligibility criteria for services and benefits are established will inevitably leave some people out. These discussions should include attention to the disparities among caregivers and the gaps in the support they receive (Wiezsorek et al., 2021).
There are limitations to this paper. Ireland and Sweden are countries where population size is comparatively small compared with that of the US and both countries have stronger social economies and more extensive community networks available to support informal caregivers. It is possible that the absolute number of caregivers in each country and how they are defined may affect services and supports. The Irish Census, for example, excludes paid non-professional caregivers. In Sweden, all types of unpaid care, help and support are defined as informal care. As a result, informal care could involve very minimal help, for example, assisting a relative to buy groceries. Such differences may help explain the variations noted across these three respective countries in this review. One other limitation is that we did not address racial and ethnic diversity among caregivers in the three countries. That is an important issue that warrants a thorough discussion, but is beyond the scope of the current paper.
Conclusion
In this paper we have developed a framework to guide observations of support systems for informal caregivers in three very different countries, Sweden, Ireland and the USA. Each of these countries is currently facing similar challenges regarding population aging, the cost of long-term institutional care, the decline in the availability of formal caregivers and the future sustainability of informal caregivers. This paper has shown how each country has developed different support systems to help assist caregivers and to mitigate the adverse impact of informal care. This may be because each country subscribes to different welfare models, has different legislative and policy approaches to caring and each reflects different social and cultural norms about informal caregiving. Each country also has promising approaches to some of the challenges of care in an aging population. However, there are also significant gaps within the three countries and inequities in support that reflect concerns about the costs of funding programs and services for caregivers. Cross-national comparisons can yield increased clarity about the role of caregivers and can help identify those approaches that work well in one country that could be adopted in other countries.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
