Introduction

After its outburst in China in December 2019, the COVID-19 outbreak (hereafter “Pandemic”) caused by the severe acute respiratory syndrome coronavirus (SARS-Cov-2) hit Europe at the end of January 2020 (Cerqua & Di Stefano, 2022). The Pandemic highlighted the multiple limitations and low resilience of the European long-term care (LTC) (see S1 Appendix for the whole list of abbreviations) systems, e.g. the inability of most health systems to prevent the emergency and take appropriate actions, the scarcity of health professionals, the difficulty of accessing services for non-COVID-19 patients, the inadequacy of home care services for people with disabilities, chronic illnesses or old age (European Commission, 2020; Santini et al., 2022), often regardless of the traditional characterization of welfare regimes (Tur-Sinai et al., 2021). Such a situation caused a decline in community care services available for (older) people with LTC needs, compared to pre-Pandemic times (Tur-Sinai et al., 2022). Moreover, the Pandemic has undermined the physical health of older people, representing the most affected population group (especially the oldest old) of the virus, often fatally (National Center for Immunization and Respiratory Diseases, 2020; Yanez et al., 2020), mainly because older age is associated with frailty and comorbidities (e.g. hypertension, diabetes, cardiovascular and respiratory system diseases) (Adab et al., 2022; Mueller et al., 2020; Vetrano et al., 2021).

The policy responses based on a wide range of containment measures applied by governments throughout Europe to tackle the Pandemic (e.g. physical distancing, school and workplace closures, travel restrictions), including comprehensive lockdown that followed the outspread of the virus, served, in part, to shield older adults from the virus. However, these measures also had adverse effects, including increased social isolation, economic difficulties, delayed medical treatments, challenges to get basic needs met, reduction/closure of many community services that have had a devastating effect on older people’s mental health and cognitive functioning (Kostyál et al., 2021; Miller, 2020). This was especially the case for older people with dementia (Numbers & Brodaty, 2021) and with neurodegenerative diseases (e.g., Parkinson’s disease) (Artusi et al., 2020; Fasano et al., 2020), who often developed neuropsychiatric disturbances (Manca et al., 2020).

The Pandemic also negatively affected informal caregivers (ICGs) (i.e. family members, friends and neighbours who usually provide unpaid care to older, frail or disabled people outside a professional context), who represent the backbone of LTC systems worldwide (Lorenz-Dant & Comas-Herrera, 2022). In Europe, it is estimated that 80% of all LTC is provided by ICGs, whose numbers range from 10 to 25% of the total population (European Commission, 2018), with average rates varying significantly between countries, depending on how informal care is defined and measured (Tur-Sinai et al., 2020).

Cross-nationally, several studies reported a reduction in the sources of support during the first waves of the Pandemic, and the related subsequent challenges ICGs experienced (Barry & Hughes, 2021; Rodrigues et al., 2021; Rothgang et al., 2020; Tsapanou et al., 2021).

The interruption of numerous elder home care, community-based and residential services (e.g. day-care centers for older people with dementia or Alzheimer’s disease) in Europe, resulted in a substantial increase in the frequency of personal care to parents (Bergmann & Wagner, 2021), in the hours of assistance and in a change of caring activities provided by ICGs of older people, such as delivering food and medications, and taking on activities for reducing older relatives’ social isolation (Chirico et al., 2022; Kostyál et al., 2021; Leiblfinger et al., 2020; Lightfoot & Moone, 2020; Lorenz-Dant, 2020; Maccora et al., 2020; Schmidt et al., 2020). Among ICGs, negative emotions, such as fear and uncertainty, increased (Bailey et al., 2022) and they experienced feeling sad/depressed and anxious/nervous more often since the Pandemic compared to pre-Pandemic (Bergmann & Wagner, 2021).

Recent studies (Leggett et al., 2022; McGarrigle et al., 2022; Zwar et al., 2023) show that during the Pandemic an increase in the provision of care can be associated with ICGs’ worsening mental health and care-related stress, as well as decreased quality of life (QoL), with higher emotional difficulty and lower affectivity towards the care recipient. An increase in the assistance provided and a change in care tasks performed had the most impact on ICGs’ physical and mental well-being (Bennett et al., 2020; Onwumere, 2021; Phillips et al., 2020; Rodrigues et al., 2021; UK, 2020), especially those supporting older people with dementia, who reported more depression and anxiety (Alexopoulos et al., 2021; Altieri & Santangelo, 2021; Hughes et al., 2021), distress and irritability (Rainero et al., 2020), or loss of control (Giebel et al., 2021). Furthermore, the sudden removal of support services also contributed to a decline in ICGs’ physical and/or mental health status (Giebel et al., 2021; Kostyál et al., 2021).

Most caregivers are women, aged between 45 and 75 years old, who provide the bulk of caregiving as spouses, middle-aged daughters or daughters-in-law (Eurocarers, 2021). Recently, several studies across different countries confirm the exacerbation of gender imbalance after the Pandemic (Boneva et al., 2020; Craig & Churchill, 2021; Zoch et al., 2021). In fact, female ICGs were more negatively affected than male informal ICGs during the Pandemic, as indicated by higher levels of anxiety, more depressive symptoms, poorer well-being, lower mental and physical health, and lower quality of life (Beach et al., 2021; Li et al., 2020; Todorovic et al., 2020; Zucca et al., 2021; Zwar et al., 2023).

The Pandemic has forced many people to take on caregiving responsibilities for the first time. For example, a recent study (Embracing Carers, 2020) carried out in 13 countries worldwide surveyed 9,000 unpaid carers and highlighted that 20% of ICGs (mainly people of the so called “sandwich generation”, responsible for bringing up their children and to provide care to their ageing parents) reported that they became a carer for the first time as a result of the Pandemic.

However, the increase in the prevalence of informal caregiving during the health crisis due to the Pandemic is still a controversial issue. For example, a study conducted in Ireland (McGarrigle et al., 2022) indicated that during the Pandemic the proportion of adults providing informal care increased, the new ICGs reported increased adverse mental health and well-being and, since women provided high intensity caring hours, they had the highest depressive symptoms compared to men. Conversely, another study carried out in Germany (Zwar et al., 2022), revealed no significantly different prevalence of informal caregiving during the Pandemic compared to before, despite the increase of both caregiving intensity and time.

A bulk of literature underlines the negative effects of closure, interruption and discontinuity in healthcare services provision on ICGs of older people during the Pandemic. Nevertheless, there are still few studies comparing the effects of the Pandemic on adult ICGs versus older ICGs of older people. It could be hypothesized that the Pandemic affected the two groups in different ways due to their different working conditions/status (i.e. being (in)active in the labor market), health status and roles played within the household (i.e. sons and daughters versus spouses and siblings).

Adult child caregivers (aged 18–64) of older people, especially working caregivers, had to find a new work-life balance when health and social care services for their loved ones were interrupted, e.g. by adapting to new work-from-home arrangements and creating new daily work and caring routines (Cho et al., 2022). Indeed, the Pandemic led to workers with care responsibilities reducing working hours or leaving the labour market (Rodrigues et al., 2021). Conversely, ICGs aged 65 and over are usually retired and the lack of working commitments can be argued to help balance care responsibilities and personal life but, on the other hand, also make it more difficult for them to distance themselves from care responsibilities (Joseph & Joseph, 2019; Lafferty et al., 2022).

Another frequently observed phenomenon in many countries was that during lockdown periods schools were closed, so that many adult caregivers, especially women involved in traditional patterns of distribution of household roles (Crawford, 2011), had to add childcare to elder care, with more negative personal and professional outcomes compared to men (Petts et al., 2021; Stefanova et al., 2021).

As for same-generation caregivers of older adults, these are at a higher risk of age-related physical and cognitive declines themselves, including chronic illness and some level of disability than ICGs belonging to younger generations (Schulz et al., 2018). Moreover, same-generation caregivers may be more at risk of psychological burden, because they are more likely to perceive caregiving as an obligation. Indeed, a study found that 60% of spousal caregivers reported having no choice in taking on the caregiving role, compared to 51% of adult children (Schulz et al., 2018). Furthermore, the digital health divide (Kaihlanen et al., 2022) might mean that older ICGs were unable to counterbalance the absence or reduction of in-person health and social care services for both themselves and their care recipients with digital technologies during the Pandemic. This may also have occurred because it was difficult to get help and instructions for using technological devices during the lockdown (European Commission, 2018; Egan, 2020; Lorenz-Dant, 2020).

The present study is focused on two sub-samples of ICGs of older people (aged 65+) with LTC needs, i.e. adult caregivers (aged 18–64) (ACGs) and older caregivers (aged 65+) (OCGs), which formed part of a larger sample of ICGs reached by an online survey, carried out between November 2020 and March 2021 in 16 European Countries (i.e. Austria, Belgium, Czech Republic, Estonia, Finland, France, Germany, Ireland, Italy, Luxemburg, Portugal, Slovenia, Spain, Sweden, Switzerland, United Kingdom) (Socci et al., 2021). The main objective of this study is to shed light on whether the Pandemic affected the physical and mental health and quality of life of the two groups of ICGs to differing extents, with a special focus on people willing/forced to start caring during the Pandemic i.e. “new” caregivers. Thus, the study aims to answer the following research questions: “How did the Pandemic affect the health status and the quality of life of adult caregivers (ACGs) differently compared to older caregivers (OCGs) of older care recipients” (RQ1)? and “To what extent did the commencement of caring activities for a relative affect “new” caregivers’ physical health, mental well-being and quality of life Pandemic” (RQ2)?

By answering the questions above, this study may contribute to cover a gap in the literature. In fact, while several national studies analysed the impact of the first Pandemic wave that occurred in Spring 2020, like most of the studies cited above, very little research has thus far been able to provide an in-depth cross-national age-related perspective on the effects of the - possibly even stronger - outbreak which took place in Europe in Winter 2020-21 (3). Moreover, few studies explored the impact of the shortfall in LTC services after the COVID-19 outbreak on physical health, mental well-being and quality of life of “new” caregivers in a gender perspective Therefore, we will present these comparative survey results to support the formulation of evidence-based suggestions for more effective post-Pandemic support for ICGs, taking into consideration possible differences and commonalities in developing supporting measures for the two groups of caregivers.

Materials and Methods

Recruitment and Data Collection Tool

The study design consists of a cross-national online survey with a convenient sample of informal caregivers who were asked to give their self-assessment of physical and mental health and quality of life, compared to before the COVID-19 outbreak, by a retrospective evaluation. The online questionnaire (S2 Appendix-Survey questionnaire) was disseminated between November 2020 and March 2021 by the broad member organisations network of Eurocarers (i.e. the European network representing ICGs and their organisations; https://eurocarers.org/); and through multiple channels, i.e. websites, social media (Twitter, Facebook groups or pages targeting ICGs and care recipients), local charities, webinars, and welfare or voluntary organizations at national, regional or local levels.

The sole inclusion criterion was providing regular (i.e. not occasional or temporary) care/support to one or more people having LTC needs with their daily activities or personal care.

Written electronic consent was requested from respondents before filling-in the questionnaire, confirming that participants: (1) had read the background information to the study; (2) voluntarily agreed to participate; (3) were 18+. All responses to the survey were collected anonymously, in compliance with the EU Regulation No. 679 of the European Parliament and of the Council of 27 April 2016 and the Helsinki Declaration (2013).

Concerning ethic issues, ethical review and approval were waived for this study, because the online survey guaranteed the full anonymity of respondents. Moreover, it did not raise any ethic risks since it neither processed special categories of personal data e.g. respondents’ political opinions, religious or philosophical beliefs; genetic, biometric and health data (such as specific diseases), nor involved vulnerable subjects e.g. children or people who have not given their explicit consent to participate in the project.

The questionnaire multiple choice items covered six thematic areas: (i) caregivers and care recipients’ socio-demographic information; (ii) impact of the Pandemic on caregivers’ health status and on the caring situation; (iii) availability and use of social and health services both for caregivers and for care recipients; (iv) caregivers’ employment and economic status; (v) use of technology during the outbreak; (vi) caregivers’ suggestions on how to improve social and health care services for better supporting them during the outbreak and beyond.

Outcomes

This analysis focused on the responses of the surveyed ICGs of older people to the following question included in the online questionnaire: “Considering your current situation compared to before the Pandemic, how has it impacted on the following aspects of your life?” (related to RQ1). After an initial overall evaluation of the above items (i-vi), the main aspects of caregiver’s well-being were explored: health status (distinguishing between physical and mental) and quality of life. Three answers were possible for life aspects investigated: “Has improved”; “Has not changed”; “Has worsened”. Since the aim of the present article is to identify the determinants of health and QoL worsening, the selected outcomes were recoded into binary responses by merging “Has improved” and “Has not changed” options.

For identifying “new ICGs” due to the Pandemic, respondents were asked the following anchoring question: “Have you started providing care to someone as a result of the Pandemic?” (related to RQ2) (answer categories Yes/No). In this sub-analysis outcome variables were the same of the main analysis as well as covariates.

Statistical Analysis

Normal distributions for continuous variables were assessed using the Shapiro-Wilk test and reported as either mean and standard deviation or median and interquartile range, based on their distribution. Comparison of variables between groups (i.e. ACGs vs. OCGs) was performed according to their distribution by either unpaired Student t-test or Mann-Whitney U test. Categorical variables were expressed as absolute frequency and percentage and analysed by Chi square test. Given the different levels of data, the statistical model had to take into account the existence of a clustered structure (Hox, 1998), since each country has a specific background and people living in the same area tend to experience similarities. Therefore, differences between the two age groups were estimated using multilevel logistic regression, adjusted for potential confounders in order to allow for the decomposition of total variability into a primary level (subject-related variability) and a secondary level (country variability) (Austin et al., 2001). All analyses were repeated after propensity scores (PS) matching to adjust for the bias inherent to the different respondent characteristics at baseline. The PS were estimated by fitting a stepwise logistic regression model with caregiver’s age group as the dependent variable and the following independent variables: recipient’s age, caregiver’s gender, number of people cared for by the caregiver, living together with the recipient and 4 + comorbidities suffered by the recipient (i.e. the socio-demographic characteristics of the two groups of caregivers). The outcomes selected for PS matching were the same of the full models. In order to obtain an accurate comparison between the two groups by making sure that their socio-demographic characteristics are as similar as possible, caliper was set at 0.005. A sub-analysis was conducted only for the group of “new caregivers” comparing adult and older caregivers starting caregiving during the outbreak by estimating three stepwise forward selection logistic regressions. Since this is a small number of subjects, PS-matching was not applied. Number of observations, joint zero tests’ p-values and McKelvey & Zavoina’s or Pseudo R2 as appropriate were reported. A 2-tailed P value < 0.05 was considered as significant.

All relevant data are available from Mendeley Dataset https://data.mendeley.com/datasets/m8rvwxsyxz. Data were analysed using STATA version 15.1 (StataCorp, College Station, TX).

Results

Overall 2,468 caregivers answered the survey. Individuals caring for someone aged less than 65 (n = 988) or not declaring the age of the care recipient (n = 30), or not reporting their own age (n = 24), were excluded from the analysis. In addition, observations with missing values in the main outcomes (n = 36) were also excluded, thus leaving 1,390 subjects available for the analysis. Table 1 reports sample characteristics by caregivers’ age group.

Table 1 Sample characteristics by age group of the caregiver before and after propensity score matching
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For both age groups, the majority of ICGs are female; mean age is 52.3 ± 8.6 for ACGs, and 73.0 ± 5.4 for OCGs, thus, in the first cohort, middle-aged people are mainly represented. More than a half (51.9%) of the overall sample completed a Tertiary level of education (i.e. University degree or higher), with a statistically significant difference between ACGs and OCGs (55.0% vs. 47.1%, p < 0.001). Differences between the two groups are more evident in relation to the employment status, with a large majority of ACGs (79.1%) who are still working compared to OCGs (88.4%) who are retired. Recipients’ mean age is 81.7 ± 7.8 for adult caregivers and 79.2 ± 7.8 for older caregivers. Most care recipients had four or more comorbidities, especially in the case of ACGs (72.4%) compared to OCGs (59.6%). Three out of four of the latter live together with the care recipient (75.6%), compared to only 35.8% of the ACGs. Adult caregivers were more willing to care for two or more people (30.7%) than older caregivers (8.3%). The COVID-19 virus had personally infected only a small number of caregivers at the time of completing the survey, and this was especially the case for ACGs (13.4% vs. 6.6%).

After the Pandemic, ACGs experienced a higher increase in the number of hours of caregiving compared to OCGs (50.6% vs. 32.3%) and similarly in practical help (49.2% vs. 38%). Moreover, public or private support services were used less often by ACGs (41.4% vs. 56.3%), who more frequently declared difficulties in accessing such services (36.9% vs. 23.4%), and more often reported hiring a migrant care worker (MCW) (16.6% vs. 9.4%). The Pandemic had also an impact on the income of the caregivers: as regards ACGs, the majority of them (57.4%) declared it remained the same, but a considerable proportion (22.9%) reported a decrease in personal income. This effect on income has been less evident in the case of OCGs, with a larger amount of respondent reporting that is substantially unchanged (73.1%). All these differences between caregiver groups are statistically significant with p < 0.001; the only non-significant difference is in the increase in providing personal care and hygiene. After PS matching, all the above-mentioned differences remained statistically significant, and the increase in providing personal care and hygiene also emerged (38.9% for ACGs vs. 30.2% for OCGs, p = 0.037). Few respondents had started using new health technology for supporting caring activities in response to the shortfall and/or closure of health and care services and there is not a significant difference in this regard between adult and older caregivers after PS matching (20.6% and 16.5% respectively). ICGs’ physical condition worsened especially for ACGs, compared to older ones (52.4% vs. 46.1%, p = 0.023). Nevertheless, quality of life was less affected for ACGs compared to older ones (75.2% vs. 82.3%, p = 0.002). However, after PS matching, the worsening in physical condition was not significantly different between adult and older caregivers.

Determinants of the most relevant outcomes (i.e. worsening in physical health, mental health and quality of life) are reported in Table 2. Regarding fixed effects, being female (OR = 1.48; 95%CI = 1.10-2.00), living together with the care recipient (OR = 1.48; 95%CI=(1.13–1.95), having been personally infected by the virus (OR = 1.85, 95%CI = 1.26–2.73), having increased the amount of caregiving hours (OR = 1.45; 95%CI = 1.11–1.90) or providing personal care and hygiene (OR = 1.41; 95%CI = 1.08–1.86), and experiencing difficulties in accessing support services (OR = 2.25; 95%CI = 1.74–2.90) and caring for a recipient with four or more comorbidities (OR = 1.66; 95%CI = 1.28–2.14) are significantly associated with a worsening in the physical health of the caregiver. After PS matching, the following determinants remained statistically significant in association with a worsening in physical health: being female (OR = 1.52; 95%CI = 1.02–2.28), living together with the recipients (OR = 1.71; OR = 1.18–2.47) and difficulties in accessing support services (OR = 2.90; 95%CI = 2.00-4.19).

Table 2 Determinants of most relevant outcomes before and after propensity score matching (PSM).
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As regards mental health, it emerged that being female (OR = 1.71; 95%CI = 1.27–2.30), having increased personal care and hygiene (OR = 1.59; 95%CI = 1.18–2.14), experiencing difficulties in accessing support services (OR = 2.29; 95%CI = 1.73–3.04) and caring for a recipient with four or more comorbidities (OR = 1.56; 95%CI = 1.20–2.02) significantly worsened the mental health of the caregiver. After PS matching the following determinants were statistically significant in association with a worsening in mental health: being female (OR = 1.67; 95%CI = 1.12–2.48), living together with the recipients (OR = 1.48; OR = 1.02–2.14) and difficulties in accessing support services (OR = 2.84; 95%CI = 1.87–4.31). Conversely, caring for a recipient with four or more comorbidities was not associated to a worsening in mental health even if it was nearly significant (OR = 1.43; 95%CI = 0.99–2.06).

As regards quality of life, it emerged that OCGs (OR = 1.71; 95%CI = 1.01–2.91), females (OR = 1.50; 95%CI = 1.06–2.10), those who increased personal care and hygiene (OR = 1.56; 95%CI = 1.11–2.20) and those who experienced difficulties in accessing support services (OR = 1.84; 95%CI = 1.34–2.54), experienced a worsening in their quality of life. After PS matching, the following determinants were significantly associated with a worsening in quality of life: being female (OR = 1.79; 95%CI = 1.15–2.79); caring for two or more people (OR = 0.48; 95%CI = 0.28–0.84); having increased personal care and hygiene (OR = 1.65; 95%CI = 1.03–2.62) and difficulties in accessing support services (OR = 1.93; 95%CI = 1.20–3.11).

As regards random effects, the ICC indicated that an amount ranging from 3 to 6% of the total variance in the outcome variables could be accounted for by country-level effects. The overall validity of the models (both full and PSM) was assured by p < 0.001 for all joint-zero tests, while the goodness of fit ranged from 0.1096 to 01533.

Table 3 reports the characteristics of the “new caregivers” sub-sample who represent 13.2% of the overall sample, according to their age groups (16.6% of the adult cohort and 8.0% of the older one).

New caregivers were most female in both the groups of adult and older caregivers. New adult caregivers had a higher educational level compared to older new caregivers (p = 0.007). They were most employed (p = < 0.001) while the older cohort included 74.4% not-working and retired people.

It emerged that new adult caregivers experienced a decrease in their physical condition more frequently than new older caregivers (61.4% vs. 44.2%, p = 0.046), they are mostly females (83.6% vs. 69.8%, p = 0.043), live with the care recipient less frequently than new older caregivers (32.1% vs. 58.1%, p = 0.002) and care for two or more people (39.3% vs. 18.6%, p = 0.013) with four or more comorbidities (71.4% vs. 46.5%, p = 0.003).

Moreover, adult new caregivers reported a decrease in their income due to the Pandemic more pronounced than the older counterpart and the difference is statistically significant (p = 0.011).

Table 3 New caregivers’ characteristics by age group
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Regarding determinants (Table 4), it emerged that for new caregivers being female was associated with worsening in physical condition (OR = 2.33, 95%CI = 1.00-5.39) and quality of life (OR = 2.65, 95%CI = 1.09–6.45). Experiencing difficulties in accessing support services was associated only with a worsening in mental health (OR = 2.87, 95%CI = 1.30–6.36). In this sub-analysis, country effects were not associated with outcome variables therefore it was not included in this regression. The overall validity of the models was assured by p < 0.001 for all joint-zero tests, while the goodness of fit ranged from 0.0840 to 0.1144.

Table 4 Determinants of most relevant outcomes for new caregivers
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Discussion

This study reports results based on data collected during the Winter 2020-21, thus providing a view of the mid-term effect of the Pandemic on ICGs’ physical health, mental well-being and quality of life and indirectly, on European LTC systems capacity to react to the health emergency. The main result of the study is that, regardless of caregivers’ age, during the Pandemic, being female, co-habiting with the care recipient/s and having difficulties in accessing support services, determined a worsening in both physical and mental health of respondents, especially when women care for more than one person, a situation affecting, not surprisingly, more women than men (Beach et al., 2021; Li et al., 2020; Todorovic et al., 2020; Zucca et al., 2021; Zwar et al., 2023). In addition to the above, another determinant associated with the worsening in quality of life of female ICGs is having increased personal care and hygiene, as well as caring for two or more people and experiencing challenges to access support services. Thus, the Pandemic exacerbated well-known gender inequalities existing within informal caregiving (Cascella Carbo & Garcia-Orellan, 2020).

Moreover, the adult cohort experienced a worsening in physical condition to a greater extent than the older cohort. This is likely due to the increase in caregiving hours because of the interruption of care services during the lockdown and other periods of restrictive measures, and on the fact that they took care of relatives with more severe health conditions (e.g. having four or more comorbidities) compared to OCGs, entailing more intensive caregiving commitments and physically strenuous caregiving activities, such as moving and handling and personal care and hygiene, which likely contributed to a deterioration in the physical health of ACGs.

Noteworthy, ACGs faced difficulties in accessing public and private services to a greater extent than OCGs. A possible explanation can be found in their multiple roles and responsibilities, likely caregiving for young/adolescent children and older parents with long-term care needs, as well as managing their work situation that might have been challenged due to the Pandemic. Thus, given the sudden onset of the Pandemic, they were most likely unable to organize appropriate, quality assistance quickly enough (Giebel et al., 2021; Kostyál et al., 2021). Likewise, although ACGs were likely to possess greater digital health literacy skills, they were unable to counterbalance the absence of in-person care services with access to digital alternatives such as tele-cognitive rehabilitation for care recipients with mild cognitive impairment or psychological support for themselves, and telecare systems for care recipients. This is probably because such services were not available in most study countries and/or because they did not have sufficient digital competencies to access and use them.

In line with the literature, this study confirms that many people started caring for older people during the Pandemic and/or increased the hours of assistance provided and that commencing caregiving for an old person, negatively affected new caregivers’ physical health, mental well-being and quality of life (Bergmann & Wagner, 2021; Embracing Carers, 2020; McGarrigle et al., 2022; Zwar et al., 2022). What this study adds to the available knowledge is that those who started caregiving during the Pandemic, were mainly middle-aged females, bearing an extremely high care burden, i.e. providing assistance to two or more older people with four or more comorbidities, which demanded regular physical effort, e.g. for mobilization and personal hygiene, to the detriment of their physical health. Moreover, the results highlight the impact of the Pandemic on adult new caregivers’ income more than the older ones. In fact, the latter were most retired and their pensions were not affected by the economic consequences of the outbreak. On the contrary, adult new caregivers might have experienced some working restrictions e.g. reducing working hours, giving up working, interrupting their business for self-employed persons.

Thus, the study seems to suggest that, cross-nationally, the second wave of the Pandemic might have been not softer than the first one (Barry & Hughes, 2021; Giebel et al., 2021; Kostyál et al., 2021; Rodrigues et al., 2021; Tsapanou et al., 2021), finding public health systems in Europe mostly unprepared (Tur-Sinai et al., 2022). This is in contrast to what was stated by Lupu and Tiganasu (Lupu & Tiganasu, 2022), arguing that after the first Pandemic wave (i.e. Winter-Spring, 2020), the inefficiency of health systems was considerable, while in the second wave (i.e. from Autumn 2020 onwards), European countries began to take adequate measures and to improve the efficiency of their health systems. Furthermore, it highlights that the restrictions to access health facilities and the prolonged lack of home care and community care services, had a cumulative negative effect on the physical health, mental well-being and quality of life especially of adult and female and new ICGs of older people with LTC needs.

Policy and Research Suggestions

In light of the results, measures, interventions and policies to support ICGs of older people with LTC needs should be both gender- and age-tailored, also in ordinary circumstances. In this respect, such measures would not only be in line with the principles of the EU Gender Equality Strategy 2020–2025 (e.g. closing the gender care gap, challenging gender stereotypes) (European Commission, 2020), but they should also address the ICGs’ needs emerging from the multiple roles they play within the household, especially women, i.e. as parents of minor/adult disabled children and, at the same time, as children or spouses of older people with LTC needs. Further and more comprehensive interventions are needed for facilitating the conciliation between caring duties and paid work, to be targeted especially towards female working caregivers. To this purpose, public administrations and private companies that have piloted various forms of agile working during the Pandemic e.g. smart and/or tele working, should systematize and make them part of the daily work routine, and add other measures such as time off, parental leave in addition to elder care leave, and the possibility of changing shifts, especially in countries where they were absent or scarce before the Pandemic.

Since, the study reveals the physical and mental health of both adult and older ICGs of older people was worsened by co-habiting with the care recipient/s, new services should be designed to find a balance between the ageing-in-place concept and the protection of ICGs’ health. To the same purpose, the quantity and the quality of residential care provided by the European public health systems needs to be increased and accompanied by respite care measures for ICGs. Likewise, especially when ICGs are old and frail themselves, and/or females, public preventive and monitoring health services should be planned for promotion of physical health (such as scheduled health screening and home visits) and mental well-being (such as periodic psychological interviews for countering depression and anxiety), in order to prevent them from becoming the second and hidden victim of caregiving.

Since the study showed that new caregivers, mostly adults and women, experienced a greater impact of the Pandemic on their physical and mental health and a greater difficulty in accessing services, compared to OCGs, it is suggested that a system be developed to promptly identify and train new caregivers. The training should be compatible with work time and easily accessible (both online and F2F), with tips on caregivers’ rights, available services and on how to access them, and even practical contents (e.g. pad changing, moving and feeding the older person with disability).

Having new caregivers also experienced economic restrictions during the outbreak, it would be appropriate to ease the tax burden on adults who had to stop work during the lockdown (e.g. freelancers) and had to start caring for a dependent older family member. Since it was impossible to take such a measure in the midst of the Pandemic, because of the priority given to the health crisis, now it is time to do.

Surprisingly, the study underlined that only a small proportion of ICGs started using new health technology to access support during the outbreak. This result calls for the provision of new and more usable health technology and ICTs to deliver remote care services both to older care recipients (e.g. telemedicine, at-distance cognitive and physical tele-rehabilitation) and ICGs (e.g. emotional support and training), and of e-health training targeted towards ICGs. At-distance support services would reach ICGs at home while they are providing assistance or supervising their care recipient/s. E-health training would not only increase ICGs’ digital literacy, but it may also represent an opportunity for dedicated self-time and, for socializing with peer caregivers, thereby enhancing well-being, mood and cognitive functions of ICGs (Schoultz et al., 2020). The extension to ordinary time of ICT-based support services targeted towards ICGs piloted during the Pandemic, would address the priorities of the European Care Strategy (European Commission, 2022), aimed at supporting ICGs also through training, counselling and psychological supports.

From a research perspective, follow-up studies would be welcomed to monitor the number and quality of support services provided by European LTC systems post-Pandemic and the impact of these on the health and wellbeing of ICGs. Just as the studies conducted during the Pandemic, including the one presented here, highlighted the lack of resilience and response capability of LTC systems, new studies would help to understand the extent to which European countries have capitalised on the innovations triggered by the health crisis and translated the lessons learned into better measures and services for both older people with LTC needs and ICGs. Future studies on ICGs of older people should adopt a gender and intergenerational perspective, to capture the specific difficulties and positive and negative caregiving outcomes related to being male, transgender or female, and of being a same or different-generation caregiver. Furthermore, more research should be dedicated to the comparison of the effect of caregiving on new and long-term caregivers. Finally, methodologically, this study confirms the necessity for scholars to be cautious in treating age as having a linear effect on attitudes toward COVID-19 preventive measures (e.g. physical isolation and social distancing) related outcomes (Daoust, 2020).

Study Limitations

The study is not without limitations. Firstly, the convenience sample does not allow for the generalization of results to all European ICGs of older people. Moreover, the number of survey respondents varied among participant countries, without taking into consideration sample representativeness (however difficult to pursue in the emergency phase during which the survey was carried out), which limits the possibility of making in-depth comparisons between national contexts. Second, the online data collection strategy tends to exclude people with no/low digital literacy skills from participating in surveys. This implies that people with low educational levels and older people might be underrepresented in the study, as it is known that citizens with higher digital competences and access to the internet are mostly younger people and people with higher formal education (Arief et al., 2018; König et al., 2018). Also, since several online surveys were conducted during the first Pandemic wave in several European countries, this might have reduced the willingness of potential respondents to participate in a further (nevertheless cross-national) survey, thus potentially reducing the sample size. Another limitation concerns the retrospective evaluation of respondents of their health status and QoL before the Pandemic as this might imply possible difficulties in recalling them. Moreover, despite the retrospective nature of our study, the PSM analysis permitted us to adjust selection bias related to the different socio-demographic characteristics of the subjects. This method may remove most confounding biases as recently confirmed by (Simoneau et al., 2022) even if some bias may remain due to sample reduction (Guo et al., 2020). Anyway, by selecting a small caliper, we managed to get to groups acceptable in dimension.

Despite these limitations, the study offers unique data, in a cross-national perspective, for understanding the impact of the Pandemic on ICGs’ physical health, mental well-being and quality of life in the second wave, by comparing adult and old caregivers of older people with LTC needs, with a focus on new ICGs who started providing care after the Pandemic. Moreover, recruiting ICGs through caregivers’ associations (affiliated and non-affiliated to Eurocarers) resulted in being an efficient and effective strategy to reach a high number of ICGs (Leslie et al., 2019) who are traditionally known to be a difficult group to involve in research (Graffigna et al., 2021).

Conclusions

This study highlighted how the reduction/interruption of social and health care services (e.g. home-based and community services) targeted to older people with LTC needs - as an effect of the scarce capacity of the European health systems to adequately face the health crisis after the Pandemic - negatively affected the physical condition, mental health and the quality of life of their ICGs, both adults and seniors, and how this was especially true for women, for new caregivers and for caregivers of older people with multimorbidity. There is a need for a profound reform of LTC in Europe through gender and age-oriented policies and interventions to support ICGs of older persons with LTC needs, so that the difficulties encountered and the suffering experienced by ICGs and their care recipients during the lockdown and the subsequent Pandemic critical phases are not wasted, becoming an opportunity to improve both the health and the quality of life of the most vulnerable European citizens.