Those who have elderly parents know well how challenging it can be to look after them and in many families it happens that someone takes on the role of caregiver, an English term whose literal translation is ‘he who gives’. And, in fact, this is precisely what the over 7 million people in Italy do every day who dedicate time and energy to caring for sick or non-self-sufficient family members, with an average daily commitment of around 6 hours. And even when it is a voluntary choice, therefore not dictated by the lack of other alternatives, it is a tiring commitment that has an impact on their lives especially if we consider that it is often long-term.
This is why caregivers are now raising their voices: with the “Caregiver, Value for Care” initiative promoted by AIPaSIM – Italian Association of Patients with Myelodysplastic Syndrome in partnership with Takeda Italia and with the support of a coalition of 30 patient associations active in the disease chronic, oncological and rare. The objective is to raise awareness of institutions, public opinion and the media on the fundamental role played by caregivers and on the urgency of providing answers to their needs, promoting their legal recognition and social and economic protection. The research and the Paper were presented today in Rome during an institutional event, organized on the initiative of Senator Elena Murelli.
The identikit of the caregivers
The survey carried out by Elma Research provides a snapshot of the over 7 million Italian family or ‘informal’ caregivers who freely, voluntarily and continuously assist a family member suffering from a chronic, oncological or rare disease, without having had specific training. . In over half of the cases (55%) they assist a parent, followed by their partner (16%). The assistance activities take up approximately 6 hours a day and include emotional and moral support, management of the patient’s daily routine, the organization of visits and therapies and the handling of medical bureaucracy, such as disability and accompaniment procedures. “Our association has worked in recent years to create awareness about myelodysplastic disease and the important socio-health and economic impact of this pathology, but above all our objective has always been to give a voice to patients and their families and bring institutional their needs and requirements,” he states Giuseppe Cafiero, president of AIPaSIM. “Experience has taught us that the caregiver is a fundamental actor in care: this observation gave rise to the idea, shared with Takeda Italia, of carrying out a survey on Italian family caregivers”.
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The challenge of bureaucratic practices
There are many daily commitments for caregivers who combine the care of the patient with bureaucratic ‘chores’ which are often very frustrating. From the survey data it emerges that 64% of caregivers follow the patient’s healthcare path, 60% follow the bureaucratic procedures and 46% support him in the management of therapies; 51% of caregivers use paid healthcare providers for assistance, but the family doctor is confirmed as the main support. “The data that emerged – continues Cafiero – are very representative of the current scenario and clearly show how the people we prefer to call “assistance donors” report many needs, priority among these being the simplification of bureaucratic procedures, psychological support and access to social welfare services”.
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A lot of effort, but with the heart
How do caregivers feel? The feeling of being overwhelmed by the patient’s needs can sometimes be strong and 67% of the sample highlights this, but 71% experience their work as ‘useful’ and ‘rewarding’. 83% even show high engagement with their activity and closeness with the person assisted because it strengthens the bond with their loved one. But it’s not all rosy because there are practical problems, of course: first of all, the management of the time reserved for the patient and partly taken away from the partner and children, from work and from oneself; the strong expenditure of physical, mental and emotional energy; the lack of skills, especially in providing support to your loved one; the bureaucratic/organizational aspects, which represent the real stumbling block for all caregivers.
What is needed specifically
The Elma Research survey also revealed their requests: 78% reported the need for social care services and among these the most desired was home care (34%) followed by the delivery of medicines at home (34%) and by facilitating transport; greater information on the patient’s protection and welfare and social security rights, as well as on practical issues relating to their activity, is requested by 56% of caregivers; while 46% feel the need for psychological support due to the high emotional load that the caregiving activity entails with alternating phases of discouragement and mistrust.
It Position paper
Starting from the results of the survey, AIPaSIM and the 30 Associations have developed a Position Paper with 4-point requests from caregivers to institutions. “The data that emerged from the survey – underlines Cafiero – have allowed AIPaSIM and the 30 partner associations to develop a series of requests that we have presented to the institutions today. We hope that political decision makers will listen and follow up on these requests and that can implement a series of concrete actions to guarantee the adequate support that caregivers deserve”.
Four requests to enhance the caregiver
The Position Paper calls for recognition of the figure of the caregiver, promoting legislative homogeneity among all the Regions, strengthening measures that can reconcile the role of caregiver with work and family, establishing National Caregiver Day, introducing tax incentives, flexibility at work, benefits and contributions for assistance. Another request is to expand access to social welfare services, guaranteeing a homogeneous network across the national territory with support services, home treatment assistance, home delivery of devices and medicines. It is also essential to promote training and information with desks/info points dedicated to caregivers in different care settings and to provide support for emotional needs, through counseling and/or psychotherapy services.