A family caregiver is a family member, friend or neighbor who provides assistance free of charge for someone who can no longer take care of him or herself.
The number of hours caregivers spend caregiving can vary greatly. 53.4% of caregivers provide assistance less than ten hours a week, 25.1% dedicate more than twenty hours per week, 19.8% provide a minimum of ten hours per week on caregiving activities and 1.6% did not report weekly hours.
Comparing the regions in Italy, Friuli-Venezia Giulia has the greatest number of caregivers (20.2%), while Umbria has the greatest number of caregivers who take care of their own family members (17.1%). Caregivers in Veneto spend the least amount of time on caregiving activities (81.8% spend less than ten hours a week), while 37.2% of caregivers in Sicily spend an average of more than 20 hours per week.
These numbers are high enough to assume that the role of a caregiver would be recognized by law, which is not the case.
Caregivers in Italy
In Italy, on average 17.4% of the population (circa 8.5 million people) are caregivers.
In recent years, the problem of juridical recognition for the role of the caregiver has finally emerged. The term caregiver means just that; a caregiver cares for someone they know who is elderly, disabled or affected by a chronic illness.
There was practically no legislation to protect the rights of caregivers until just a few years ago. Recently some measures have been taken, but they remain superficial and are not very effective.
Two years ago the first fund for caregivers was created through Bill 1461, which officially established a minimum amount of protection for the work carried out by caregivers, recognizing their social and economic value within the country. Quite often caregivers are elderly people that provide assistance for people their own age, often a spouse, but there are also caregivers that are very young.
Being a caregiver is not a choice, but a necessity and remains as such for a long period of time, if not for the rest of a caregiver’s life. The majority of caregivers are not able to continue their career while providing caregiving activities and, consequently, often lose their economic livelihood.
This is not the only problem. According to Nobel Prize winner Elizabeth Blackburn, caregivers subjected to stressful situations have a lower life expectancy than the average citizen (9-17 years less). Recognizing and protecting caregivers, and anyone who assists family members and friends, consequently making an important contribution to Italy’s welfare, must be a fundamental priority. The Bill is the first step, but it needs to be reviewed and improved on in order to fully recognize the role of the caregiver and their rights, as well as those of the people they are caring for. 24.9% of caregivers range from 45 to 54 years of age and 26.6% range from 55 to 64. More specifically, 22% in the first age group and 22.9% in the second provide assistance for their own family members.
What a caregiver does
What a caregiver does
Caregivers carry out various tasks:
- Assisting a sick person by administering medicine or therapies;
- Managing prescriptions and purchasing medicine as well as planning specialized medical visits;
- Often maintaining the good personal hygiene of the sick person when he or she is not self-sufficient;
- Cooking meals and other activities to care for and assist a family member or friend with a disability or other pathology.
Caregiving is a job to all effects and is tiring both physically and psychologically. The life of a caregiver is stressful and allows little time for socializing.
This is the caregiver’s situation within a context where no real law exists, within an ineffective State that refuses to recognize a group of the population that offers a fundamental contribution to the National healthcare system.
Why caregivers are essential
Why caregivers are essential
Considering all caregivers in Italy, at least 7.3 million (14.9%) are family members of the person needing care and 600,000 families have a family member with a serious illness that requires extra assistance. Furthermore, considering the average age of the Italian population is on the rise, these numbers are destined to climb. If no concrete measures are taken, more and more people will thus be forced to leave their jobs to care for a family member. This includes many young people who, in order to fully care for a parent who cannot live without their help, are not able to integrate into the workplace.
Caregivers provide assistance voluntarily. They do not receive payment, but save individual families and society a great deal of money.
If economic budgets, in addition to revenues and expenditures, had a section called “savings”, the role of the caregiver probably would not be so invisible. In the context of care work, the role of the family caregiver is particularly burdensome. Despite this, in contrast to other European countries, the role of the caregiver in Italy is not juridically recognized or protected in any way, clearly revealing how the role of the caregiver goes unnoticed, is taken for granted and deemed irrelevant.
It is a very unfavorable situation for caregivers, especially for women given that even today the vast majority of caregivers are women.
Family caregivers can face a variety of different situations, all which worsen as more and more relatives with disabilities need assistance at a time when private and public services remain lacking or insufficient. In more challenging situations, family caregivers may incur conditions of distress, suffering, solitude, fatigue, psychological and physiological stress, insufficient rest and a feeling of being overwhelmed by responsibility and economic difficulties (disabilities bring about greater expenses). All this while being forced to reduce their time at a paid job or having to give up their job all together in order to offer assistance to a loved one ( 66% of family caregivers end up giving up their normal jobs). Considering the large aging population in Italy, the need for assistance is destined to rise in the near future and there will be few families that do not require assistance for one of their family members.
There are 390,000 caregivers between the ages of 15-24 years old. These young people provide regular assistance for a family member, sacrificing time, energy, the balance and well-being of their family and putting their own health and personal and professional fulfillment at risk.
Normally these young caregivers are brothers or sisters of a person with a disability or the sons and daughters of parents afflicted by a physical or psychiatric disability. These numbers are only approximate, but provide a picture of a hidden phenomenon which is barely spoken about, but needs to be brought to the surface. For example, Italy lacks an analysis and a national strategy that coordinates the actors of this phenomenon, making their voices heard and helping them to meet one another and join forces to establish political and social solutions.
None of this has been done because the phenomenon of caregiving has been underestimated, even though a federation exists to act as a voice for caregivers in Europe (Eurocarers).
The problems a caregiver faces are also social. Caregivers do not easily speak about their conditions. Many think their situation is very individual, they do not feel understood, don’t know who to talk to and, without a support network, end up isolating themselves even more, triggering a spiral of suffering without friends, relationships or hobbies and putting their own future at risk.
Is there a law?
Is there a law?
The only law protecting caregivers today is law 104, which allows three months of paid leave for someone who needs to assist a family member with a disability or a special leave of 2 years in very serious cases.
These measures, however, are not enough to allow a caregiver to continue to live his or her own life beyond caring for their family member. There are also benefits and bonuses for caregivers, but which are not very effective yet.
Budget law 2018, for example, established a national fund of 20 million euros per year for family caregivers, providing a total of 60 million euros until 2020 (averaging a ridiculous amount of two euros per caregiver each year).
At present, the only specific measures and initiatives that exist were taken by individual Regions, while the State has not been able to offer a specific response to the problem.
Emilia-Romagna was the first region to adopt laws to protect caregivers and now Abruzzo, Campania, Lazio, the Marche, Piedmont, Lombardy and Sardinia are following their example.
In 2014, Emilia-Romagna adopted a regional law that provides “Regulations for the recognition and support of the family caregiver” and recognizes the role of the caregiver as an integrated part of social and healthcare services.
Additionally, Emilia-Romagna used a part of the finances from the regional fund for self-sufficiency to support caregivers. A care allowance was created from these resources that caregivers and their families can benefit from on a monthly basis.
Furthermore, the measures taken by the region of Emilia-Romagna lean in the direction of inserting caregivers totally into the social care system, encouraging contact with non-profit organizations and services within the region.
In the short term, several associations located throughout the entire country have made demands that regard the following points:
- Promoting (possibly using resources provided by the fund for self-sufficiency) institutional interventions in territorial, home and community settings through the realization of local interventions for social welfare (i.e. in neighborhoods).
- Creating a training/educational journey (also targeted at institutional, managerial and operational components) that can be modified to adapt to continuously evolving realities and that is able to overcome the rigidities of operations and regulations.
- Creating instruments and interventions that can be modified as needs change and that are not based on the classification of pathologies or disability codes, but on real needs.
The opinion of associations
The opinion of associations
Several associations for the protection of caregivers expressed their opinions on the bill. In order to be effective, they say the bill must provide:
- “Personalized” responses that can eventually be modified on the basis of the needs of the sick person and the caregiver and on the path of treatment that not only involves institutional resources, but also “volunteer work” and “community welfare”;
- Responses that identify the caregiver as the owner of his or her own life plan and who share in making “informed choices” on their path of care;
- Training and guidance on the rights of the caregiver, the services available and the operative and relational skills needed;
- Simplifying the recognition of the role of the family caregiver;
- Psychological support even through support or self-mutual help groups;
- Caregiver coaching with the help of operators with specific technical skills;
- Supporting the younger generations of caregivers, particularly maintaining their right to study and integrate into society;
- Recognition of hours spent caregiving from a professional point of view and tax incentives for;
- Extension of imputed contributions for the entire period of caregiving and not only three years;
- Recognition of the role of the caregiver and its classification as a “heavy occupation”.
Our hope is that the Italian government soon passes a comprehensive law that offers a great deal of protection for caregivers, a reality that is often unnoticed, but fundamental to our country.
© Domedica s.r.l.