Assistance to family members with disabilities (family caregivers)



The English term caregiver has now become firmly established in common use to indicate "who takes care" and refers to people who assist for a continuous period of time, a relative who is sick and / or disabled who is not self-sufficient.

The person who takes care of a family member is also called informal caregiver or family caregiver to distinguish it from formal caregivers, who carry out their care activities in the form of paid work. Formal caregivers are both professional figures who work in health (socio-health workers or OSS, educators, psychologists, nurses, physiotherapists), and the caregivers to whom the Italian families who need them entrust their relatives to support the family member. who takes care of them (family or informal caregiver).

From the point of view of national legislation, an amendment to budget law no. 205 of 27 December 2017 which provided for a fund of 60 million euros, for the three-year period 2018-2020, for the recognition and enhancement of the figure of the family or informal caregiver.

From 2018 until today, the bill no.555 of 2018 which has the task of dictating the rules that establish how the resources of the fund must be used by the Regions.

In Italy there is no official data on how many family or informal caregivers are there, but a 2011 survey by the National Statistics Institute (ISTAT) reported a percentage equal to about 8% of the population.

As in the rest of the world, the main ones are also in Italy cfamily or informal aregivers are women (up to 75% of the total) aged between 45 and 64, who often work or who have had to leave their job to devote full time to the care of those who are no longer self-employed (in 60% of cases).

The care activity carried out by the family or informal caregiver consists of a real job, which however often has not been chosen but which is carried out for the affection towards one's relative, and consists in providing for the care and hygiene personnel, as well as the administration of medical care, night assistance, assistance on holidays, to favor social integration, to accompany him to the doctor, to provide assistance in hospital etc. The tasks are often very numerous, depending on the type of disease and the level of non self-sufficiency. Given this commitment, often the person who takes care of a family member (family or informal caregiver) does not enjoy the necessary rest or holidays, sick days or time for medical examinations and preventive medical checks ( screening), things to which a professional or a formal caregiver is entitled.

The care activity in favor of the family member has an economic value for society; if this were to fail, in fact, the State would have to face the high costs of maintaining it in a specialized structure or for hospitalization.For all these reasons, family or informal caregivers, also through the numerous associations present in Italy, ask the institutions for formal recognition of their rights through a national law that guarantees that they can claim them.

Assistance to family members with disabilities (family or informal caregivers) and health

The scientific literature agrees that, in general, the quality of life of people who take care of their families (family or informal caregivers) is lower than that of the general population.

The low quality of life is associated with health conditions, both mental and physical, which are more precarious. This is especially noticeable in those caregivers subjected to long-lasting stress such as those caring for a family member with a behavioral disorder, with intellectual disability or dementia, as in the case of Alzheimer's disease.

The Nobel Prize in Medicine Elisabeth Blackburn has shown that in women who take care of family members (informal caregivers) and are subjected to high levels of stress for a long time, the shortening of the length of the parts of DNA placed at the ends of the chromosomes ( called telomeres) is accelerated compared to what normally happens as cells age. This suggests an association between the strong stress experienced for long periods, premature aging and the propensity to develop aging diseases.

Since female figures are more involved in care activities within the family, female caregivers may be exposed to greater health risks than men.

In this regard, the data from the scientific literature indicate that women who take on more care of care, are more frequently subject to depressive disorders, have a perception of poor physical health and well-being.Furthermore, women experience psychological stress more and respond to it differently than men.

For these considerations, more research is needed to understand the true nature of the health differences observed so far between women and men (gender-specific).


Ministry of Labor and Social Policies. What are the support measures for caregivers at the moment?

National Observatory on Women's and Gender Health (Onda). From health to women's welfare. White Paper 2016. Milan: Franco Angeli, 2016

Epell ES et al. Accelerated telomere shortening in response to life stress. PNAS Proceedings of the National Academy of Sciences of the United States of America. 2004; 101: 17312-17315

Petrini M et al. Health Issues and Informal Caregiving in Europe and Italy. Annals of the "Istituto Superiore di Sanità". 2019; 55: 41-50

Sharma N, Chakrabarti S, Grover S. Gender differences in caregiving among family - caregivers of people with mental illnesses. World journal of psychatry. 2016; 6: 7-17

Further links

Senate of the Republic. Bill n. 555. Provisions for the recognition and support of the family caregiver

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