Social support systems
Organisation and financing of social support to people with dementia and carers
Background information on the social/healthcare system in Italy
In 1978, the National Health System was set up in Italy. In the same year, Local Health Authorities (USL) were created which were controlled by the municipalities. However, it was not until 2000 that a legal framework and financial basis for a national development of social services was established.
There is still a strong emphasis on support from the family. Care of the elderly is traditionally considered as a kind of “social duty” by the family, especially the women on whom the main burden of care falls. According to Auser (2001), “it is generally accepted as normal and legitimate that the community and institutions should become involved in caring for elderly family members only after the family resources – often interpreted in a very extended sense (up to the third degree of kinship) have run out (in Polverini et al. 2004).
Demand for home care services has nevertheless increased significantly but supply has been fairly limited. The percentage of over 65 year-olds using home care services in Italy is very low (i.e. 1% of the population) compared to other countries e.g. 5.5% in the United Kingdom, 6.5% in Germany and almost 10% in Scandinavia (Minguzzi in Polverini et al. 2004). Moreover, there have been considerable differences in the development and distribution of home care services, particularly between the north and south of the country. There are also differences between the populations. For example in the north, elderly people tend to live in better conditions; on the islands, such as Sicily and Sardinia, there is a higher percentage of chronic diseases and disability (Nesti et al. 2003). Services tend to be fragmented and public expenditure on health services is fairly low.
The organisation of social support for people with dementia and carers
Each ‘regione’ (totalling 20) in Italy is autonomous in organising overall social services, and there exist wide levels of difference between one region and another. In some (e.g. Emilia Romagna, Toscana, Lombardia and Veneto), some type of social support is contemplated and organised, but in others dementia care is confined to day centres or private organisations. Carers are very much left to their own devices in many regions, although things seem to be gradually improving.
The Ministry of Health and the Ministry of Social Services are responsible for social support for people with dementia/elderly dependent people. Each Region has its autonomous authority responsible for such matters. There is some overlap and a certain degree of conflice between the two Ministries. There is also some degree of interaction between the State, the private sector and voluntary associations/NGOs.
The overall funding of social support for people with dementia and carers
Support for people with dementia and carers is mainly funded through general taxation, and an additional fee for each service.
In Italy, citizens must purchase a ticket in order to have access to services within the National Health Service. People who are over 65 years old and those suffering from an officially recognised chronic and disabling disease do not have to pay.
The Law 328/2000 on the Establishment of an Integrated System of Social Services and Interventions gave local governments the authorisation to make various kinds of economic transfers (known as vouchers) which can be used by elderly people to purchase services. However, only about 10% of municipalities issue such vouchers. Care allowances, on the other hand, are more widely used but they are nevertheless more common in the north of the country than in the south (Scarpa, 2006).
The regions have legislative powers over health and welfare but home care services are financed entirely by local councils. Such services are generally rendered to people on low incomes. Elderly people may have to contribute towards costs using their pensions, vouchers and care payments. Those with extremely limited financial resources may be exempt from making these partial payments. According to Dogliotti et al. (1999), there is a die-hard cultural misconception in Italy that care is not considered as a right to be claimed by each and every citizen, but rather as a concession from above, similar to some sort of ‘charity’ (in Polverini et al., 2004, p.57).
According to Nesti et al. (2003), national surveys have revealed that 15% of families caring for an elderly relative employ informal carers on a private basis for more than 20 hours per week. These carers are often immigrants and the amount paid per month ranges from approximately EUR 500 in the South to EUR 800 in the North (Salvini, 2006). In some cases, families use the vouchers that they are given for services to contribute towards the cost of private care.
The legal framework surrounding the provision of social support
Reform of the National Health System began in 1992 with the Health Care Decree no. 502/1992, followed by the “Objective: Ageing Persons” project (the National Plan for Welfare), Law no. 328/2000 relating to the creation of an integrated care and social services system and finally the Guidance and Coordination related to Health and Social Integration Act of 2001.
The objective of the National Plan for Elderly People was to better coordinate medical and social services so as to ensure their integration within the home care services system. Related services are intended to promote the well-being of elderly people and to help them to maintain their autonomy.
Every person in Italy, with insufficient financial resources, irrespective of age, can ask for “alimony” from his/her family. According to articles 433, 438 and 443 of the Civil Code, relatives can fulfil this obligation either by paying money every month or by accepting and supporting the person in their own home (Polverini et al., 2004).
The suitability of social support for people with dementia and carers
Adequacy and accessibility in general
Health services (assessment and diagnosis, especially within the national CRONOS project, which was concluded two years ago) are adequate and accessible, although limited in some rural areas and for different types of dementia. Generally speaking, the same cannot be said for social support and psycho-social interventions.
The attitude is ‘top-down’, not ‘bottom-up’, so not much importance is given either to the assessment or the satisfaction of specific needs. Families often sacrifice a great deal of time and effort in order to meet their relatives’ needs.
People from ethnic minorities and younger people with dementia
There is no specific support for people from ethnic minorities and for younger people with dementia.
Services and support for people with dementia and their carers
Types of care
Day care exists but is insufficient. It is partly funded by the state and partly by service users.
Respite care in the home is available but only private services are considered sufficient. In some regions e.g. in Emilia, the municipalities contribute towards this service. Short-term and long-term respite care is not generally available.
Long-term residential care
There is no national reglementation but tentative guidelines are being drafted at regional level.
Palliative care at home is mainly funded by service users. There are no palliative care centres for people with dementia.
Monitoring in the home via alarm systems
Private companies offer home tele-alarm systems but people must pay for this themselves. Generally speaking, this service is insufficient. In the Emilia Romagna region, this will be introduced in the next few months.
Personal assistance and home help
The following services are available:
- Assistance with personal hygiene (partly funded by service users) – insufficient
- Occupational therapy/ergotherapy – insufficient
- Assistive devices – perhaps in some regions
- Home transformations – only on a private basis
The following services are not available:
- Assistance taking medication
- Assistance with eating and drinking
- Assistance with lifting and moving
- Assistance with incontinence
- Assistance with skin care
- Companionship/social activities
In some regions, there are plans to provide assistance with housework. The following services do not exist:
- Help with the preparation of meals
- Assistance with shopping
- Transportation service
- Laundry service
Psychosocial support and training for people with dementia and carers
There is a general information service providing information about the availability of services but it is only sufficient in a few regions. Counselling services exist for people with dementia but this is not considered sufficient. Holidays for elderly and disabled people are available but not specifically for people with dementia. Training for carers is available is some regions e.g. Emilia.
Work/tax related support for people with dementia
There are no legal provisions to protect people diagnosed with dementia who are still in paid employment. They are not entitled to tax refunds or benefits on the basis of their incapacity or for employing someone to provide home care services. People with dementia are not entitled to any reductions for television or radio licences or on public transport.
They may, however, be entitled to direct payments to pay for care. This takes the form of a cheque called ‘assegno di cura’. In some regions, it is possible to apply for home adaptations e.g. in Emilia where there is a CAD (Centro Adattamento Ambientale e Domestico). They may also be entitled to an allowance, called the “indennità di accompagnamento” but this is paid directly to their carer (please see below).
Work/tax related support for carers and carer allowances
Article 33 of Law 5.2.1992 n.104 deals with paid time off work for people who have a relative with a severe handicap (e.g. a person with dementia who has been officially declared an “invalid” under the “Invalidity Law”). The spouse or relative (up to third degree i.e. brother-in-law, father-in-law etc.) is entitled to up to 3 days’ leave per month. This leave is fully paid by the INPS (the national social security agency) or another social security agency. It is not necessary to live under the same roof as the severely handicapped person. The leave is taken on a daily basis and can be continuous or staggered. However, it cannot be accumulated from one month to the next. Furthermore, under this law the relative can request to be transferred, when feasible, to another place of work (of his/her company), which is closer to the disabled relative, but cannot be transferred without his/her consent.
Article 4 of Law 8.3.2000 n.53 deals with long-term unpaid leave for people with serious family problems e.g. whereby a member of the family is dependent and unable to manage activities of daily living. It is granted to the spouse or relatives up to the third degree. Up to 2 years’ unpaid leave can be taken in a staggered manner. At the end of the stipulated period of time, the worker has the right to return to his/her job. He/she also has the right to return earlier if not otherwise stipulated by her/his company.
In accordance with Law 11.2.1980 n.18, the “indennità di accompagnamento” is granted to people who have been officially declared as being “invalid” i.e. they are unable to accomplish activities of daily living. In order to qualify, the person must first make an application to be declared an invalid in accordance with the “Invalidity Law“. The allowance was Euro 450.78 in 2006. It is not means tested and is paid to the carer. S/he may also be eligible to purchase a car without having to pay VAT.
Unless otherwise stated, information provided by Marie V. Gianelli from the Scuola provinciale per le Professioni Sociali Bolzano (Bozen) and Andrea Fabbo /MD) in August 2007
- Salvini, G. (2006), information provided by email in connection with Alzheimer Europe’s homecare project
- Nesti, G. et al. (2003), Providing integrated health and social care for older persons in Italy, Procare ( http://www.imsersomayores.csic.es/documentos/documentos/procare-providingitaly-01.pdf )
- Polverini, F., Principi, A., Balducci, C., Melchiorre, G., Sabrina Quattrini, M., Gianelli, S., Gianelli, M.V. and Lamura, G. (2004), National Background Report for Italy, EUROFAMCARE. http://www.uke.uni-hamburg.de/extern/eurofamcare/documents/nabare_italy_rc1_a4.pdf
- Scarpa, S. (2006) "La riforma delle politiche per gli anziani non autosufficienti in Italia e in Svezia: un caso di simmetria apparente?" [The reforms of elderly care policies in Italy and Sweden: a case of apparent symmetry?], in Stato e Mercato, n. 78, Bologna: Il Mulino
- Information on special leave: Università degli studi Magna Græcia di Catanzaro, http://www.unicz.it/lavoro/DDL4275.htm
Last Updated: mercredi 15 juillet 2009