**1. Introduction**

Dementia is a disease currently affecting around 50 million people worldwide, corresponding to about 5% of the older population worldwide [1]. It is a public health priority for which most of the modern welfare states are not fully prepared [2]. Dementia onset is associated with age and low education in early life [1,3]. Other causal determinants include hypertension at midlife, smoking and diabetes, which are often related to lifestyle factors [3]. People with dementia face a disabling condition and gradually reach the need for extensive support by informal and formal care in activities of daily living (ADL), e.g., showering, dressing and managing finances [3], restricting their participation in the society leading to adverse events such as institutionalization and inappropriate use of health care

and social services (care and services) [3]. The disease has no cure and affects considerably also the life of families and significant others, leading to an overall negative economic and health impact for the society [4]. Indeed, empirical data show that everywhere in Europe families and other informal caregivers are those who provide the bulk of care to their dependent older relatives, thus facing the most significant share of the disease burden [5].

The World Health Organization (WHO) strongly recommends addressing this challenge by creating specific dementia care plans in each country and accordingly reallocating resources [1]. In line with these recommendations, high-income countries in recent years endeavored to achieve effective health prevention, timely diagnosis and an overall increase of the availability of health care and social services (care and services) [6]. Access to long-term care services is particularly relevant due to the dementia characteristic trajectories during which people might require a mix of care and services to ensure independent living and quality of life [7]. The care is mainly related to the timely diagnosis and symptom managemen<sup>t</sup> and services are mainly focusing on supporting independence in ADL. The availability of care and services may differ significantly across countries, e.g., in terms of type and amount of services provided and the way they are delivered [8]. Recent evidence suggests that this intervention area could include interventions to improve lifestyle, e.g., in terms of physical activity and nutrition, as this might prevent complications and even slow down the progression of the disease [9]. As the majority of people with dementia live at home, due to the deinstitutionalization and ageing-in-place policies, informal caregivers, mainly family members, make up the cornerstone of the whole care system [3,4]. However, as a consequence of their difficult roles, they experience a high level of caregiver burden which put them in a condition of psychological, physical and financial strain [1,3], being at risk of declining health and increased care needs. As the on-going trends sugges<sup>t</sup> a future increase of the prevalence of people with dementia worldwide, there is an urgen<sup>t</sup> need to improve the effectiveness and efficiency of the dementia care systems in all countries. It is especially relevant to achieve an appropriate balance between the formal and informal care contribution to guarantee care situations respectful of the quality of life and social rights of both people with dementia and their caregivers.

In this respect, several studies have analyzed the resource utilization in dementia care [10] across different geographical and cultural contexts, also using a comparative approach [11]. These studies have revealed how widely the use of care and services can vary across countries, and how different the conditions of the informal caregivers can be. Nonetheless, many studies have adopted a pure cost-analysis approach, providing mostly data on the global financial consequences of the disease (e.g., in terms of total public or private healthcare expenditure), without giving details on the characteristics and intensity of the services driving the costs and their relation with the informal care network. Comparative analysis in this area would be particularly interesting within the European Union context, and the similarities and differences in how the dementia care systems are organized [12]. Sweden and Italy for instance represent different welfare systems and cultures (Nordic vs. Mediterranean), facing similar challenges in organizing dementia care and support for informal caregivers. Both Sweden and Italy are high income countries with similar life expectancy at birth, estimated at 83 and 82 years for Italy and Sweden, respectively [13,14]. Sweden is a Nordic welfare state with a long tradition of service provision to support people with dementia and their caregivers [15–17]. The population size is around 10 million inhabitants, representing one of the oldest populations in the world [18,19], out of which approximately 160,000 people have a dementia diagnosis [20]. Dementia is one of the leading causes of mortality in Sweden [14]. The majority of people with dementia live at home with support from informal caregivers and have a wide range of available care and services [20]. The care of people with dementia in Sweden is a shared responsibility between the counties and the municipalities. The county councils are responsible for healthcare according to the Health and Medical Services Act [21]. The municipalities are responsible for the elderly citizens, 65 years or older, according to the Social Services Act [22]. All care is financed through taxes. National guidelines for dementia care and the provision of care and services have been developed to ensure that the care

provided by county councils and municipalities are equal independently of where one lives [21]. Italy has a population of approximately 60 million people and the second highest proportion of older people (65 years old or more) in Europe and about 1 million people with dementia [23,24]. The healthcare system is regionally decentralized, and Italy was the first country to introduce nationwide specialized memory clinics for dementia care [16,25]. Here, while home help is provided by the municipalities, nursing home care is the responsibility of the Local Health District and largely funded by the National Health Fund. However, significant disparities exist among Italian regions regarding the availability of these services [25]. Most often, families opt for privately paid care workers due to the scarce services available for dementia care, and thus they face a significant impact on household budgets due to out-of-pocket expenditures [23,26]. This in part urged the creation of a national plan that aims to promote and improve interventions for people with dementia and their families [25].

In terms of resources allocated to healthcare, the total health expenditure in Italy reaches about 9% and in Sweden about 11% of GDP, while out-of-pocket expenditure of the Italian population accounts for 23% of their current health expenditure, compared to 15% for Sweden [27]. Due to the different allocations of resources within the healthcare budget and the different levels of resources available in the area of care and services, it is estimated that, on average, a Swedish citizen has at least three times more funding available for long-term care compared to an Italian citizen [15].

This study was based on the experience of two recent research projects, namely TECH@HOME and UP-TECH, which have investigated, among other outcomes, the economic impact of dementia in Sweden and Italy. The similarities of the study designs and samples give the opportunity to investigate two different care systems responding to similar challenges concerning welfare systems sustainability. Such comparison might contribute to a better understanding of the current dementia care and service systems in Europe, but also to hypothesize how differences in the levels of formal care provision might impact on the dynamics of informal care levels, and vice versa [28]. The overarching aim of this study was thus to contribute to the knowledge gap on utilization of formal and informal dementia care across European welfare states and on how such differences might impact on the daily arrangements of people with dementia and their caregivers. Specific aims of the study were to evaluate: (a) the characteristics of people with dementia and their caregivers in Sweden and Italy; (b) the level of resources utilization in the two countries; and (c) the factors associated with the time spent in caregiving by the informal caregivers of the people with dementia.
