**4. Discussion**

### *4.1. Differences in Socio-Economic Conditions of the Dyads in the Two Countries*

Findings of our study showed mainly "women caring for women", as in both countries they were the majority among caregivers and people with dementia. This trend has been seen in many other studies where female gender is highly represented [38–40]. However, the Swedish commitment with gender equality was revealed in our findings. In line with other studies focusing on long-term care in a Swedish context, only slight differences were seen between the proportion of male and female informal caregivers [17,18], differently from what was observed in Italy, where the ratio of female to male informal caregiver is about 7 to 3.

Diverse caring dynamics were seen in each country. In Italy, informal caregivers tend to live significantly more with the person with dementia than in the Swedish sample. Some European studies have shown that living with the PwD indicates higher time spent in caregiving [41–43] and higher risk of caregiver burden [41,44]. These precedents coincide with our findings. Italian caregivers had a higher time spent in caregiving activities and had a worse psychological health than the Swedish sample. Interestingly, when adding IADL dependence level to the model, the relation between the variable "living with the PwD" and "hours of informal care provided" changes. At a bivariate level, living together the PwD was associated to a higher number of hours of care provided. However, our regression suggests that this might be the result of the interaction between the living status and the IADL dependence level of the PwD. In other terms, caregivers caring for PwD with higher IADL impairment are more frequently living with them, compared with those caring for PwD with less level of dependency. This suggests that the choice of co-residence might be influenced by the level of dependency of the person with dementia.

In this respect, it is interesting to observe that Italian persons with dementia were more frequently living with their adult children. This difference may be explained due to a still high prevalence of intergenerational households in Italy and prevalent family-based care of the country [16,38,45]. This possibly reflects a history of a strong cultural norm of caring responsibilities, in spite of its current changing trend inside families [45]. It could also reflect a cost saving strategy. Households under economic strain and the financial situation of a country contribute in the decision of co-residence [46]. This could be intentionally opted for or more a response to the increasing uncertainties in the globalized world [46]. Conversely, in Sweden, people with dementia were more frequently living alone, probably due to the widespread support from the state, which could offset economic burden and allow them to sustain living on their own [46,47].

Surprisingly, even though Swedish caregivers represented an older age group, our findings showed that they were more actively working than the Italian caregivers. The extensive utilization of dementia care services might allow them to remain at the workplace and consequently spend fewer hours per day in caregiving. Conversely, the Italian sample was less actively working despite having more caregivers in a working age. As previously depicted in other studies, they might have to reduce their working hours or to stop working to care for the person with dementia [23,44]. In line with these results, our regression model indicated an association between caregivers actively working and less time spent in informal caregiving activities.

### *4.2. Differences in Informal Caregiving Intensity*

The time spent in informal care was regarded as an important part of the analysis. In a pan-European study, Bremer and Cabrera [48] considered that an average of 4–8 h per day spent in caring for ADLs by informal caregivers constitutes a medium level of intensity of care. Similarly, Ory and Hoffman [49] utilized an intensity of care index where about 3 h per day is considered an intermediate level of care. According to these definitions, we could conclude that both countries significantly relied on informal care. The average time spent in caring activities was 3.9 h per day in the Swedish sample and 6.3 h per day in the Italian one. The age of the PwD was associated with informal caregiving time, and this is consistent with previous studies conducted in a European context [41,50]. Additionally, studies have reported an association between high severity of disease and worse health state of the informal caregiver [42]. Italian people with dementia had a higher level of severity of the disease and this could explain the higher proportion of psychological distress in their informal caregivers.

Interestingly, our regression showed that being from Sweden is associated with fewer mean hours spent in caregiving activities in comparison to the Italian sample. The impact of the country of origin on informal care might reflect differences in health care systems, and socioeconomic and cultural factors [40,51]. In our study, we found higher utilization of health and social care services in the Swedish sample, but lower levels of informal care provisions. These differences might be rooted in several explanatory factors. Firstly, Italy and Sweden represent two different types of welfare states, as suggested by Esping-Andersen work, in which different levels of complementarity between informal and formal care can be found [12,15]. Welfare states can be categorized as liberal, conservative and social democratic and differences among these typologies reflect their "(...) political ideologies with regard to stratification, de-commodification and the public-private mix of welfare" [12]. A social democratic model, such as the Swedish one, represents a state that ensures equal health and social service provision and funding for all citizens through a tax-based system [38]. In a conservative model, such as the Italian one, the state is partially responsible for service provision and funding through social insurance schemes, therefore relying on a strong family-based care. Raggi and Leonardi's work [52] is in line with this interpretation, as it identifies a north–south European gradient in care, in which Northern European countries are characterized by universal social policies, state support for families and a large public sector and Southern European one by a mix of universal private services and benefits together with a fragmented system between health and social care services. Our findings indeed show that the

Italian sample had a comparatively low utilization of services but strongly relied either in another informal caregiver or in paid care workers. Secondly, cultural norms could be considered another cause of divergence between countries. As Brandt and Haberkern pointed out [38], intergenerational help is subject to cultural norms, and according to these norms the state would have an effect in "crowding in" (more family support) or "crowding out" (less family support). For instance, in the Swedish context, intergenerational households are comparatively scarcer and adult children are less frequently caregivers than in the Italian context. The state here supports the families through services, thus creating a "crowding out" effect. Conversely, in Italy, more adult children are informal caregivers and the state plays a residual role, thus creating a "crowding in" effect [38,53]. Due to lack of services, Italian families might have slim alternatives of care and internalized caring responsibilities and this could also reflect their increased level of burden seen in our findings. Thirdly, help seeking behaviors constitute another potential source of explanation of the differences seen in resource utilization between the two countries in our study. According to Alzheimer's Disease International (ADI) "concerns regarding stigma may be one factor deterring or delaying help seeking" [6]. This could be explained by the lack of information and awareness of services available together with a need of improvement in tailored formal care delivery [54]. In the case of the Italian informal caregivers, a perception of self-sufficiency and a reliance on internal family support might hinder the demand for other alternatives of care [48]. Lastly, availability and accessibility of services influences the level of resource utilization. The dementia care pathway should be addressed through a continuum between health and social care services across "(...) the various stages of the disease as a seamless process, as needs for both types of care evolve" [8]. Fragmentation between these could potentially hinder utilization of resources. In this respect, formal services in Italy are often described as scarce and fragmented, hence this could explain the low resource utilization seen in our findings [15,55]. In the Swedish context, formal services seem to be highly available but its utilization is low, therefore an alignment with needs is necessary [56].
