Ester Gubert (Department of Sociology and Social Research, University of Trento, Italy)

Eleonora Perobelli (Cergas, SDA Bocconi School of Management, Milan, Italy)

The Italian Long-term Care (LTC) system for people with functional and/or cognitive dependency is characterised by high reliance on families, cash-oriented policy interventions and fragmented and multi-levelled governance. Families represent the bulk of LTC in Italy by providing care directly (more intensively in low-income households), or indirectly by hiring domestic workers [1]. The LTC policy model reinforces this family-based system, as the most widespread intervention is a universal cash benefit, the Companion Allowance (Indennità di Accompagnamento), which has no constraints on use and no connections to formal care services, offers a fixed monthly amount of about five hundred euros regardless of the level of dependency and has universal access, meaning that all individuals with a severe disability are eligible and have no age- or income restrictions. Besides this, the provision of in-kind services is residual and scattered across the country [2]. The principal interventions for dependent older people are also accessible to younger people with disabilities. However, additional interventions are available for the latter target group depending on the type of disability[1]. These differences result from the unique historical developments in the legal frameworks supporting the rights of people with disabilities, which were successfully influenced by the advocacy efforts of various family associations [3]. Instead, despite several proposals, LTC for older people has been characterised by inertia for structural policy reform over the past 26 years. In the aftermath of the COVID-19 pandemic, a reform process started that ultimately led to the approval of a comprehensive legislative framework in March 2023. However, the implementation decree issued in early 2024 significantly reduced the potential impact of the reform [4]. Lastly, there is a high level of institutional fragmentation in relation to funding sources, governance, and managerial responsibilities, which are split between the national authorities, the Regions or Autonomous Provinces, and the municipalities.

This country profile focuses on the LTC system for older people but it also includes some interventions that are also accessible to younger people with disabilities. Since the legal framework developed along separate lines, data and research have primarily concentrated on either older people or younger people with disabilities.

[1] Italian law currently recognises three different definitions of disability, giving access to different support services: civil invalidity—law no. 118/1971; people with physical, mental, or sensory impairment—law no. 104/1992; and people with disability in the workplace—law no. 68/1999.

In Italy, responsibility for LTC policy is split between the Ministry of Health and the Ministry of Labour and Social Policy, which are in charge of health and social care services, and the National Social Insurance Agency, which is responsible for funding and managing the cash benefit Companion Allowance. Eligibility for the Companion Allowance is assessed by medical commissions, which are under the responsibility of regional governments.

As for care services, the two ministries define a national framework that provides general guidelines and sets minimum service provision levels, which are vaguely defined and do not guarantee funding for social care [5]. Healthcare service provision is the responsibility of Regions or Autonomous Provinces, which fund and regulate it on behalf of the National Health System. In contrast, the organisation, finance, and management responsibilities of social care provision are the responsibility of municipalities.

In this highly fragmented system, coordination between central and local governments is weak and extremely heterogeneous, differing from region to region and even between municipalities. Similarly, coordination between cash and care interventions is generally poor, as is the case between social and health care, despite few local exceptions [6].

Italy finances public LTC through national, regional and local taxation, depending on the LTC intervention. In 2023, overall public expenditure was estimated to be 1.63% of Gross Domestic Product (GDP), of which 73.6% was devoted to people aged 65 and over. Of the public LTC expenditure for older people, 35.1% is for healthcare, 43.9% is for Companion Allowance, and 21% for social care services [7]. The overall expenditure on GDP aligns with the European average, but it is heavily oriented towards the provision of cash benefits [8].

Most LTC services involve cost-sharing, and the criteria vary across local authorities and regions. Typically, co-payments are based upon income testing, with municipalities generally covering them for people with limited economic resources. For nursing homes, the fee can be divided into two components: one covering medical and care assistance costs and the other covering accommodation costs (e.g., meals). The healthcare component of the fee varies sharply across regions as it is funded by Regional Healthcare Systems, which set different care standards and quality criteria [9]. As for the accommodation costs, some regions set a limit to families’ co-payment fees, whereas others do not, which can lead to high burdens for families.

Out-of-pocket payments play a crucial role in Italy. In 2022, it has been estimated that the State saved 8.8 billion euros, equal to 0.5% of GDP, thanks to families’ spending on regular and irregular domestic carers, though it is unclear, how much of this families’ spending includes public cash benefits [10]. In addition, there are out-of-pocket payments for long-term care in social care (no available data) and healthcare; the latter accounted for around 13% of total public spending in 2019 on long-term care [8]. These costs can be partly covered with the Companion Allowance, whose fixed monthly amount is 531.76 euros in 2024 for anyone assessed eligible, regardless of their level of care needs.

In Italy, there are few people with private insurance for LTC; in 2015, they were estimated to be 4.19% of those over 65 [11].

There is no shared definition of quality in LTC. The national government is primarily responsible for defining the system’s quality and shares this responsibility with the Regions or Autonomous Provinces. At the regional level, various strategies are adopted to assess and guarantee quality: authorisation and accreditation; the ratio of beneficiaries to various types of professional staff; legislation that addresses abuses and mistreatment of LTC recipients; and professional requirements for workers. These criteria are established at the regional level with sharp differences across territories [9]. Moreover, they vary depending on the kind of LTC care service (home or residential care) and whether they apply to social or health care. Also, no quality-assurance safeguards are in place for the Companion Allowance; once the person is assessed to be eligible for it, there is no control over how it is used since there are no constraints on use [12].

The public LTC system reaches only a limited share of older people with functional dependency [13]: in 2022, 22.4% of them received home care, whereas 8% received residential care. The universal cash benefit reached 40% of this target group, confirming the cash orientation of the Italian system. However, service use varies sharply across the country due to the different availability of services across the country and the absence of standardised tools for the eligibility assessment [12]. This is also because regions in the Centre-North have more availability of in-kind services and a lower number of cash beneficiaries with respect to regions in the South [13].

In 2023, cash benefits represented 51.3% of the total public LTC expenditure for older adults, whereas 20% was dedicated to home care services and 28% to institutions [7]. There are significant variations between Regions and Autonomous Provinces since they can allocate economic resources to prioritise different care models [14].

The most developed and generous public support for family carers consists of care leave, accessible to public and private employees whose relatives have been assessed as having severe disabilities (Laws No 104/1992, 388/2000, and 183/2010, as amended subsequently). It applies to workers across all sectors; however, self-employed and household and domestic service workers are excluded. Care leave offers a combination of longer and short-term leave for urgent situations. Co-resident close relatives can access long-term leave, which has a maximum of 2 years or 730 days during the worker’s entire working life. The short-term work permits have a maximum length of leave of 3 days per month (36 days per year); it can be taken hourly to a maximum of 18 hours per month. It is fully compensated and pensionable and can be used by only one household member. Besides the care leave, there are no support interventions for family carers, such as training, skills validation, and respite, at the national level. These are limited and sparsely available at the local levels [12].

There are two types of homecare services: social care and health care. Social care is under the responsibility of municipalities. It consists of help with daily living activities, mainly personal care, and targets those who are most economically disadvantaged and have the most critical care needs [1]. Health home care is the responsibility of the Regions and is managed by Local Healthcare Units. It consists of nursing care and has a higher coverage but a very low intensity, on average 15 hours per year [15].

Local Healthcare Units also manage semi-residential services, such as daycare. These are residual and unevenly distributed across the country; they reach around 20.000 older adults, with an estimated take-up rate of 0.5% of people with functional dependency [13].

Supported housing

Besides these residential care settings, assisted living facilities are dedicated to the same community housing target but are smaller and do not have a communal organisation of daily life. Differently from the previous ones, these are promoted by local authorities, third-sector organisations and private companies and include [20]:

• Sheltered housing: groups of small flats where older people live independently and have shared places for socialisation;
• Intergenerational shared housing: single houses where older adults and younger people have their bedrooms and share other living spaces (e.g. kitchen, living room);
• Shared housing: single houses where small groups of people live together, sharing some spaces and having their private bedrooms.

The Regions and Autonomous Provinces regulate residential facilities offering medical and nursing care on behalf of the National Healthcare System. In 2007, the Ministry of Health [16] classified residential care facilities into four types:

• Nursing homes for acute care offer intensive treatments supporting vital functions for people in vegetative states or coma, with severe respiratory insufficiencies or suffering from severe neurogenerative diseases;
• Nursing homes provide extensive care to dependent people with high healthcare needs. This type includes units dedicated to people living with dementia and having behavioural or affective disorders and in need of extensive assistance and rehabilitation;
• Care homes provide long-term care to dependent older people with low healthcare needs;
• Community housing targets older people who need help in some instrumental activities or socio-emotional support.

Within this legislative framework, each region or Autonomous Province regulates its residential care services, with sharp differences across the country [13].

There is no national data on the actual number of LTC providers: the latest estimates counted around 2.000 organisations, which manage, on average, two nursing homes with 140 beds each [17]. In 2022, 85% of these residential care facilities were managed by private providers, which received accreditation [18]. Traditionally, most private providers belonged to the non-profit sector [19]. However, the share of private for-profit providers, including large multinational groups, is gradually increasing. Data on a representative sample of LTC providers [13] show that 87% of their revenues are made from contracts with the public sector. Looking at revenues from a service perspective, 56% comes from nursing homes, followed by the other residential LTC services.

Initiatives to improve age-friendly communities are sparsely distributed nationwide, but no study has mapped them all. These projects can have different organisational structures. Some are promoted by third-sector organisations with and without the partnership of public bodies, and regional or local authorities solely promote others. The most well-known initiatives aim to promote a social context that is as supportive as possible for people with dementia and their families and to improve the quality of life for the whole community. For instance, this is the case of “Dementia Friendly Italia,” promoted by Federazione Alzheimer Italia, which coordinates and implements the dissemination of “friends of people with dementia” by following the English model of Dementia Friendly Community[1].

[1] www.dementiafriendly.it

According to the first national survey on access to assistive technologies in Italy [21], 51% of the interviewees use auxiliary aids daily. The survey sampled the whole population, but older people were the primary auxiliary aid users. The most used are sight aids, such as glasses and contact lenses (47% of the sample), followed by mobility aids (11%), aids for cognitive difficulties (7%), for hearing problems (5%), for difficulties in daily activities (4%) and for communication difficulties (0.9%). Digital technologies, such as smartphones and tablets, are considered aids by the interviewees and are widespread solutions for people with disabilities or functional impairments. Also, 6.8% of the sampled participants declared that they need an auxiliary aid but do not have it or need to change the ones they use. This share of unmet needs rises to 14% among those with many daily living difficulties. As for the funding, the National Healthcare System subsidised 8.8% of the aid (including aids for mobility, basic activities of daily living, hearing and cognitive impairments), and 76.5% has been paid out-of-pocket. Regional or local authorities can promote innovative initiatives offering other assistive technologies, but there is no data on their spread and use.

The number of regular LTC workers was estimated to be around 260,000 in 2016, composed primarily of women (83,5%) [12]. Due to a lack of data, little is known about the care workforce in Italy, especially in the homecare sector. As for the residential sector, most care workers are Auxiliary Healthcare Workers (Operatore Socio Assistenziale) and Healthcare Support Workers (Operatore Socio Sanitario), followed by doctors, nurses, and other professionals [11]. Auxiliary Healthcare Workers are trained to help people with daily activities, help them maintain autonomy, and offer socio-emotional support. Healthcare Support Workers have health-related training, which enables them to assist nursing staff. The training courses for these two profiles last between 800 and 1,200 hours and require an internship in an accredited facility. The average hourly wage for workers in residential care was around 11 euros in 2015, lower than the average salary for both part-time and full-time workers in the industrial sector and for workers with less than a high school degree [11].

Since 2020, the shortage of care workforce has become critical due to the pandemic’s impact. However, it stabilised in 2022, when regional governments implemented mostly experimental and temporary interventions, which were, in most cases, derogations from standards and structural requirements. Even though these have managed to contain this crisis through agreements with employment agencies, recruitment from other Italian regions, and re-organization of shifts and work arrangements within individual services, they have not solved the core issue [22]. As of 2023, a sample of representative providers declared that, on average, they were still short of 10% of healthcare (doctors and nurses) personnel and 7% of care professionals, improving their situation with respect to 2021, when the shortages were of 26% and 16%, respectively [23].

As for other southern and eastern European countries, the low number of formal LTC workers is also explained by the limited development of LTC services, the high reliance on family caregiving, and the prominent market for irregular domestic workers. According to recent estimates, in 2022, there were 1.86 million domestic workers in Italy, of which 51.8% were irregularly employed. Foreign women, mainly from Eastern Europe, dominate this sector [10]. Many operate in poor working conditions and lack sufficient qualifications. Indeed, this job has no mandatory training or requirements, even though local interventions try incentivising their participation in training courses and regularising their contracts [11].

As for unpaid carers, estimates from the European Health Interview Survey suggest that in Italy about 2.4 million people provide more than 20 hours per week of caregiving for relatives; 60% of these carers are women [24]. Women tend to take charge of personal care. In contrast, men tend to be more active in helping with financial issues and instrumental activities of daily living, such as shopping [11].

The information systems for LTC reflect the fragmentation of the organisation of LTC, leading to highly fragmented and disconnected datasets [25]. Each LTC public body collects data concerning the intervention it is responsible for (see “Governance and system organisation”). In addition, local healthcare units and social services also collect data on their users, but the systems are not connected and can vary significantly across the country. Lastly, various observatories and research institutes publish periodic reports on the LTC system or specific aspects (see “Key sources”). In short, describing the phenomenon and evaluating its performance is challenging and requires working with different data sources [25].

The coverage of the potential need offered by formal LTC services is estimated to be very limited: residential care covers 8% of all adults with functional or cognitive dependency, semi-residential care covers 0.5%, and the homecare services delivered by the Local Healthcare Units reach 22% of the potential population in need but with temporary and low-intensity interventions [18]. The intervention with the highest coverage (40%) is the Companion Allowance.

The core features of Italian LTC policies, such as being cash-oriented and family-based, exacerbate socioeconomic and gender inequalities [26; 2]. Also, inequalities are detected in access to formal care: low-income households strongly rely on family caregiving and partially on public care provision. Meanwhile, medium and high-income families are more likely to use market solutions despite the reliance on family remaining significant [1]. Where one lives also determines the possibility of accessing LTC, considering the vast differences in care provision across regions [27]. Also, without national standards, access criteria and needs assessments greatly vary across the country primarily for LTC services but also for the Companion Allowance [12].

The Pandemic has dramatically highlighted several weaknesses of the Italian LTC system [6; 28; 29]. To address these weaknesses, it is essential to tackle the structural problems of this system. This can be achieved by widening care service provision and affordability, promoting effective policies on service quality and evaluation, revising cash benefits to make them more equitable and their use accountable, and fostering policies addressing access inequalities to LTC services [12].

Over the last 26 years, several commissions, political actors and research institutes have advanced various LTC policy reform proposals without success. With the pandemic, a window of opportunity for an LTC reform opened, considering the coupling of favouring conditions, which brought the reform back to the governmental agenda in Italy [4]. The reform process between 2021 and 2024 has been tortuous. In March 2023, the reform was approved with the Enabling Law n.33. However, the implementing decree issued in January 2024 substantially downsized the innovation of the previous legislative framework, jeopardising its potential impact on the sector. The reform had three main goals:

• building a unitary LTC sector to tackle the existing fragmentation and the lack of coordination;
• adapting the intervention models to the needs of dependent older people and their families;
• expanding the offer of LTC services.

The Implementing Decree n.29 in 2024 rewrites the previous goals’ implementation guidance instead of providing clear guidance. This has reduced or postponed most of the innovation in the previous goals, except for the reform of the needs assessment process, which should simplify access to the national cash benefit and long-term care interventions and be implemented by the end of 2025 [4]. In any case, the Decree will not bring additional economic resources to the system, which raises doubts about its transformative potential.

Gubert E. and Perobelli E. (2024) Long-Term Care System Profile: Italy. Global Observatory of Long-Term Care, Care Policy & Evaluation Centre, London School of Economics and Political Science. https://goltc.org/system-profile/italy/

• The Statistical yearbook of the National Healthcare System (Annuario Statistico del SSN) published by the Ministry of Health and where all the data on the LTC healthcare component coming from the Regions are elaborated: https://www.salute.gov.it/portale/temi/p2_5.jsp?lingua=italiano&area=statisticheSSN&menu=annuario;
• The National Institute for Work Accident Insurance (INAIL) collects data on accidents and occupational diseases: https://casellario.inail.it/portale/it.html;
• The National Institute of Statistics (ISTAT) conducts periodic surveys where data on LTC needs and provision can also be retrieved, such as in “Multiscopo sulle famiglie: condizioni di salute e ricorso ai servizi sanitari”: https://www.istat.it/;
• The Dementia Observatory of the Istituto Superiore di Sanità: https://www.demenze.it/;
• The National Social Security Institute (INPS) collects data on the Companion Allowance with some access limitations: https://www.inps.it/it/it/dati-e-bilanci.html;
• PASSI d’Argento of the Istituto Superiore di Sanità (ISS) collects data on the health and behavioural risk factors linked to chronic non-communicable diseases in the older population of Italy: https://www.epicentro.iss.it/passi-argento/

Periodic reports on LTC in Italy are published by:

• The Dependency Network (Network Non Autosufficienza, NNA): https://www.luoghicura.it/le-pubblicazioni-di-nna/;
• The Observatory on LONG-TERM CARE (OLTC) of CERGAS – SDA Bocconi: https://cergas.unibocconi.eu/observatories/oltc_;
• Observatory on Healthcare Organizations and Policies in Italy: https://cergas.unibocconi.eu/oasi-2023;
• The National Observatory DOMINA on domestic work: https://www.osservatoriolavorodomestico.it/
• General State Accounting Office of the Ministry of Economics and Finance on LTC spending: https://www.rgs.mef.gov.it/VERSIONE-I/attivita_istituzionali/monitoraggio/spesa_pensionistica/index.html

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