Evidence on social inequalities in health and long-term care for the very old in home and institutional long-term care settings

All included studies used secondary data based on previous surveys, publications, and official surveys. Studies 1 and 2 analyzed data from the Survey of Health, Ageing and Retirement in Europe (SHARE): Study 1 interpreted data from the first and second waves of the survey from four European countries (Denmark, Germany, France, Italy). Study 2 evaluated data from 136 administrative regions from 12 European countries (Austria, Belgium, Croatia, Czech Republic, Estonia, France, Germany, Italy, Poland, Spain, Sweden, Switzerland). Study 3 relied on domestic political and statistical data (Norway, Denmark, Sweden, Finland) and the relevant research literature. Study 4 drew on data from the English Longitudinal Study of Ageing (ELSA), 6th–9th survey rounds 2012–2018.

Structural orientation of long-term care system

It is clear that inequalities in care are associated with the structural orientation of the system. Albertini and Pavolini (see Table 1) highlighted the observation that stronger inequalities can be expected in market-oriented systems of health and nursing care (in this case, Germany and Italy) than in systems with a more publicly funded delivery system (Albertini and Pavolini 2017). The likelihood of receiving professional care services varied among the countries surveyed in the SHARE study (N = 9824) (Walkner et al. 2018): France was first, where most SHARE survey participants reported receiving care services from public or private providers (33% of respondents), followed by Denmark (23%). In contrast, the proportion in Germany (9%) and Italy (8%) was less than 10%. The likelihood of receiving informal personal care services from providers outside the household was higher in Italy and Germany (5% each, rounded) than in France (4%) and Denmark (2%). The situation was similar for informal care provided by members of ones’ own household (Italy 12%, Germany 8%, France 7%, Denmark 4%). The authors assumed that the likelihood of receiving professionally provided long-term care services is thus higher in supply-oriented countries such as Denmark and France than in market-oriented countries such as Italy and Germany (Albertini and Pavolini 2017).

Table 1 Included studies search string 1 (question 1)De-familialization as a conditioning factor

Floridi et al. cited the degree of de-familialization as another conditioning factor for inequalities in long-term care (study 2, see Table 1) (Floridi et al. 2021). De-familization is defined as the degree to which the provision of care services does not depend on family resources and rather is provided to a significant degree through publicly funded care providers. The opposite is familialization, where the provision of long-term care depends on the family resources and the availability of market-oriented service providers, an aspect which is also mentioned by Albertini and Pavolini (2017). The number of beds in long-term care was cited as an indicator (Floridi et al. 2021): the lower the number of beds, the more common family-based care becomes. Economically disadvantaged individuals or groups are more likely to benefit from de-familialization, i.e., the presence of inpatient care structures.

Changes in the Scandinavian model

However, Rostgaard et al. showed that the Scandinavian model (or the different variants in Norway, Sweden, Denmark, and Finland) can no longer maintain its old egalitarian claim due to the unequal and unfair distribution of care provision, the curtailment and prioritization of resources, informalization (in terms of family-based care), and privatization (study 3, Table 1) (Rostgaard et al. 2022). This development has created a parallel market-oriented care system, in which plentiful personal economic resources are advantageous for the use of these additional services (OECD/EU 2023). Services are no longer geared towards the broad (older) population, and geographical inequalities (urban vs. rural) and economic inequalities (poor vs. rich) as well as gender inequalities are the expected consequences (OECD/EU 2023).

Failing correspondence of care needs and service utilization

Hu et al. described how socioeconomic status, ethnicity, and relationship status influence the need for and utilization of long-term care services (see study 4, Table 1) (Hu et al. 2022): The variance in the need for care showed that the trajectories of needs did not correspond to utilization of services (e.g., highly pronounced needs, but only moderately pronounced intensity of care). The risk of unmet need is likely to increase with the level of need. Also, persons with high care needs can no longer obtain adequate care from formal care services due to the discontinuation of care by a spouse. Therefore, not only will the availability of care services be an issue, but the adequate coverage of needs will become a priority issue as well. In the future, formal care services will not be able to meet the care needs of individuals. Overall, it is clear that inequalities in care appear to be dependent on the structure of health and long-term care services systems. This aspect is likely to be adopted in other contexts or countries as well.

Difference in health and nursing care provision according to social determinants, gender, and region

Study 5 (Fu and Chui 2020) is a cross-sectional study with 556 subjects aged 70 to 101 years in 10 cities in China (see Table 2). It examined patterns of need, the role of living conditions, and the impact of Confucian filial piety on the aforementioned aspects. Studies 6 to 10 are secondary data analyses of previously conducted surveys: Study 6 (Hu et al. 2020) analyzes the Social Survey of Older People in Urban China, and study 7 (Lei et al. 2016) examines the Chinese Longitudinal Healthy Longevity Survey. Study 8 (Jang and Kawachi 2019) considers the sixth wave of the Korean Longitudinal Study of Ageing survey (see all listed studies in Table 2). Study 9 (Steinbeisser et al. 2018) refers to a regional survey in Germany. Study 10 (Spijker and Zueras 2020) refers to the second (2006, n = 266) and fifth (2013; n = 787) survey waves of the SHARE study, using data from individuals aged 65 years and older (see Table 2).

Table 2 Included studies search string 2 (question 2)

Four of the included publications are from the Asian region (China and South Korea), two from Europe (Germany and Spain). Definite differences exist between the Asian and European countries with regard to status and access to social security systems. Cultural values may also have an indirect influence here. In this sense, social, gender and regional determinants are joined by cultural determinants.

Filial piety and long-term care

In the Chinese context, these determinants seem to cluster in the involvement of the elderly or very old in family and regional or spatial structures when it comes to the use of informal and formal care services by service providers. Fu and Chui highlight here the limited access to publicly funded formal care services in China (Fu and Chui 2020). There is a tendency to fall back on the family, thus forgoing formal assistance even when needs are high. Furthermore, the cultural norm of “Confucian filial piety” has an indirect effect on this renunciation. The cohabitation of elderly people with their children must also be taken into account here with regard to the assumption of costs for informal care services by the children.

Spatial and local proximity as determining factors

Another determining factor in the Chinese context of Hu et al. might be the spatial or local proximity of care services that are used or purchased formally or informally (Hu et al. 2020). If external services are not in accessible proximity, they are not used. In this kind of a family-centered system with relatively late-established and high-threshold social protection for long-term care of the elderly, single people with no entitlement to formal care services represent a definite risk group.

Moreover, the delicate family (informal) care system will be overburdened by demographic change and labor mobility (Lei et al. 2016). Accordingly, income, living conditions, and neighborhoods constitute determinants of the availability and affordability of informal services to care for the elderly.

Acceptance of formal assistance as cultural topic

Similar to China, the Korean system is strongly family-oriented (Jang and Kawachi 2019). The determinants of long-term care for the elderly are considered to be female gender due to women’s longer life expectancy, male gender due to male role perception, and limited public resources. While women, due to their longer life expectancy, will later be dependent on external assistance, the availability thereof is uncertain in the future. Because of their social role, men do not accept formal assistance despite an existing need. Instead, they accept formal assistance when they take care of their wives or assume the responsible role for this. In addition, there are intra-family inequalities, as children are more likely to support their mothers with informal assistance. In a sense, men exclude themselves from informal and formal long-term care. However, economic factors have an influence on the use of informal care services by women. This concerns poorer elderly/high-aged mothers who do not want to burden their children financially by using informal or purchased care services.

Predisposing factors of long-term care

The two studies from the European context point to less family-centered systems of long-term care for the very old. They show a stronger tendency toward externalization of support services. In this regard, the study by Steinbeisser et al. identified the following predisposing factors of long-term care (Steinbeisser et al. 2018): advanced age, female gender, multimorbidity, and high levels of disability. With regard to utilization, living alone, availability of high income, and the expression of the degree of disability constitute dispositional factors for utilization.

Re-familialization of long-term care

The Spanish example of Spijker and Zueras highlights the importance of economic crises and their resonance in the social safety net (Spijker and Zueras 2020). Originally, long-term care for the elderly, which was within the family, was externalized through the introduction of a state support system. As a result of the economic crisis, the receipt of formal services from this social security system was prioritized or restricted. Instead of formal services, allowances were paid to children who cared for their elderly parents. Because of the high unemployment rate, allowances for unemployed relatives led to re-familialization or combined informal assistance systems with public funds.

As a result, a risk group for underprovision appears to be single persons without family ties and with insufficient economic resources. However, this may also apply to divorced persons at old age in the future. Overall, the impression is that the main distinguishing determinants of long-term care provision can be seen as the orientation of long-term care toward a service to be provided primarily by the family and the possibility of having recourse to public funds and benefits. However, health care was not the primary focus of the articles, so no conclusions can be drawn here.

Aspects of health and long-term care that address social, health, and gender inequalities identified on an international level

The literature review identified a few publications which directly refer to aspects of health and long-term care that relate to social, health, and gender inequalities. However, these are also part of the findings presented earlier (see Table 3). Because of this overlap, the synthesis of results is given directly under this heading.

Table 3 Included studies search string 3 (question 3)Contrast between market- and supply-oriented systems

The main aspect is the contrast between market-oriented and supply-oriented systems, which can also be described as the contrast between “de-familialization” and “familialization.” Another aspect is socioeconomic status. In the context of the European Union, Albertini and Pavolini reported that the structure of the long-term care system can be seen as a cause of social inequalities and indirectly of gender inequalities (Albertini and Pavolini 2017). The stronger the market orientation, the stronger the familialization of the care system. At the same time, from the authors’ perspective, this results in a major influence of socioeconomic status with regard to the receipt of care services (OECD/EU 2023). Due to familialization, women are mainly involved in providing and receiving care services. In this context, Floridi et al. also elaborated on the importance of structured services in the form of institutionalized long-term care beds (Floridi et al. 2021). If a region has few long-term care beds, more pronounced familialization of the long-term care system is to be expected.

Limited welfare state services and cultural norms

The study from China by Lei et al. describes similar constellations, whereby the welfare state offer seems to be more restricted than in Europe (Lei et al. 2016). In addition, there is a cultural factor in the form of Confucian filial piety. Due to the limited publicly funded long-term care services, people who are socioeconomically poorly off or who have no or no strongly developed family resources are affected by social inequality. Lei et al. described this inequality as a lack of coverage of physiological and psychological needs that can otherwise be addressed by the family. Indirectly, social and gender inequalities can be derived from this when viewed as a whole, since women will not only take over care in more family-based systems, but also have longer-lasting care needs due to their longer life expectancy. At the same time, and this is particularly highlighted by Lei et al., demographic changes and job-related mobility are thinning family networks.

Given the limited studies or literature, a salient aspect of inequality in long-term care that can be noted is the structural orientation of care systems toward family-based—i.e., market-oriented—long-term care. Indirectly, this presumably results in social, health-related, and gender-specific inequalities with regard to ensuring long-term care for the very old.

“Tipping point” of the progressive aging process, including developments in health and nursing impairment that define the use of long-term care servicesFactors predictive of long-term care

The first included study is a systematic review (see Table 4) including 23 studies from Europe, North America, and Hong Kong (Harrison et al. 2017). The sample size of the studies varies significantly between 94 and 262,345 participants and a study duration between 3 months and 10 years. The proportion of participants who were admitted to a nursing home after an acute hospitalization ranged from 3% to 77%, although the proportion could not be calculated in three studies in the review. In addition, there is considerable conceptual heterogeneity in the terminology used in the reviewed studies, as none of the studies had clearly defined the term “nursing home” or the type of care concepts; also, none of the studies were judged to be at low risk of bias in all domains. In selecting participants, the samples were often nonconsecutive, and the exclusion criteria were restrictively defined. At the same time, variables that led to bias in the results were noted. The authors focused on the phenomena of “dementia” and “delirium.”

Table 4 Included studies search string 4 (question 4)Prognostic model of risk for entry into long-term care

The second study examined data from the 1999 and 2004 National Long-Term Care Survey (NLTCS) and the 2011 National Health and Ageing Study (NHATS) caregiver surveys regarding older adults in the United States as part of a secondary data analysis (Table 4) (Wolff et al. 2018). The objective was the testing of a predictive model for early detection of risk for entry into long-term inpatient care among older adults. At the same time, Medicare enrollment data were used and data from the Informal Caregiver Survey 1999 and 2004 and the National Study of Caregivers 2011 regarding family caregivers were considered. In the final sample of the latter study, data from 2676 older adult–caregiver relationships were analyzed. Admission to a long-term care home was defined as a stay of more than 100 days or stay until death. Nursing home episodes were determined using minimum data sets (MDS). Time of death was determined using Medicare enrollment files. Wolff et al. highlight the overload of the family or informal care system as a possible predictor (Wolff et al. 2018).

A definitive “tipping point” as a definable term or phenomenon cannot be identified in the international literature. Rather, the literature from the United States is concerned with identifying factors or predictors that can determine the risk for the transition from acute inpatient hospitalization or from home to inpatient care. Factors include physical worsening conditions combined with US-specific gender- and ethno-cultural-related aspects (i.e., female gender, white skin), a tendency to live alone, and an increase in accidental events in the foreground (Harrison et al. 2017). The identified aspects thus point to a multifactorial phenomenon of the transition of very old people into institutionalized long-term inpatient care.