Parkinson’s disease: Not a disease of the elderly, more attention to young patients and their families. But the caregiver law is in jeopardy

by Lucia Conti

The challenge against disease relates not only to treatments, but also to the ability to ensure care capable of ensuring the highest possible quality of life for patients and family caregivers, which today balances fundamentally in patient management. We talked about it in the last episode of Camerae Sanitatis Dedicated to neuroscience and in particular to Parkinson’s disease with Hon. Ianaro, Milesi (Parkinson Italy), Antonini (University of Padua), Pipitone (Anin) and Senator Bennetti who explained: “The law on caregivers is in great danger, but we will turn some parts of it into amendments to the other Ddl from more certain procedure”

June 22 Building networks, aligning and homogenizing care pathways, ensuring that patients from all over the country have access to facilities that offer advanced treatments and home care. And again, to train clinicians so that they can direct patients to the most appropriate paths and above all to inform and publicize Parkinson’s disease, a disease that has a powerful impact on the lives of patients, but also on the people close to them. That is why the challenge today is not just to find new treatments to cure diseases or change their course. The challenge is also to create care capable of ensuring the highest possible level of quality of life for patients on the one hand, and on the other hand the best assistance for family caregivers.

This was discussed in the last episode of Camerae SanitatisAnd the The multimedia editorial format that arose from a collaboration between the Joint Parliamentary Group Scienza & Salute and SICS Publisher. Last episode’s guests moderated it Esther Marago, Promoted with an unconditional contribution from Abbvie and especially dedicated to Parkinson’s disease Angela IanarroChairman of the Parliamentary Group on Science and Health; Jianji MelisiPresident of the Italian Parkinson’s Association; Angelo Antonini, Professor in charge of the Parkinson’s and Movement Disorders Unit at the Neuroscience Clinic of the University of Padua; josie pipeton, President of Anin (National Association of Nurses in Neurology); and the senator Paula Bennetti, Member of the Twelfth Senate Hygiene and Health Care Committee.

The comparison was made by clip “Don’t call me sick”, The modern exhibition designed by the Italian Parkinson’s Association, which through the voices of Lila Costa And the Claudio Bisio Collects and publishes testimonials of those with Parkinson’s disease on their skin.

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“Listening to the voice of patients and caregivers is important,”
hung Angela Ianarro. “Science alone cannot give all the answers. It is necessary to inform, to define, and to participate in the paths of life, which are sometimes very complex but still full of hope.”

Then Iannaro argued the need to bypass “commercial interventions or bills that will probably never see the light of day”. According to the chair of the Parliamentary Group on Science and Health, “continuity is needed, for structuring.” In the case of Parkinson’s disease, there is also a “national observatory capable of monitoring and obtaining a comprehensive, long-term view.”

To better understand what Parkinson’s disease is, Angelo Antonini, Notable first is how many aspects of widespread Parkinson’s disease are often overlooked. He explained, “In people’s minds, Parkinson’s disease is often associated with Pope John Paul II and tremors,” but he explained that “about a third of patients do not have tremors, and in many cases the disease does not start with motor signs.” Moreover, “The myth that Parkinson’s disease is a disease of the elderly must be dispelled. There are people who start it even before the age of thirty, and therefore live with the disease almost their whole life; this clearly has a significant impact. He explained that more than 20,000 patients are less They are over 40.

It is therefore necessary for Antonini to know the symptoms that precede the motor symptoms. Symptoms that can appear “even 10-15 years ago” and thus “can help to make a timely diagnosis of the disease.” Among these, “smell change, similar to symptoms we’ve learned about with Covid, and sleep and mood disturbances.” Without forgetting that “Parkinson’s disease is the most common neurodegenerative disease and has a genetic cause: 1 in 10 patients, which in the Mediterranean also becomes 1 in 3”.

The expert explained that the discovery that Parkinson’s has genetic causes led to significant changes. “If, on the one hand, screening people at risk was a diagnostic advantage, on the other hand it had a significant impact on the lives of these people, for example on the decision to have children or planning other aspects of their future.” However, Antonini wanted to highlight the progress made by science: “Advanced biological treatments give us hope that in the next five years we will be able to dramatically change the course of the disease.”

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It is essential, for the chief of the Parkinson’s and Movement Disorders Unit at the Clinic for Neurosciences at the University of Padua, that the health care system moves in tandem with science. “We need to build networks, align and homogenize pathways, and ensure that patients from all over the country have access to facilities that offer advanced treatments. Physicians need training so that they can direct patients to the most appropriate treatment modalities.”

Notes shared by Giangi Milesi, who highlighted that this strengthening of care should also aim to ease the burden on family members, “who today suffer from disease as much as the patient himself.” The caregiver, according to the president of the Parkinson’s Federation of Italy, “risks today being a second patient.” Millisi stressed that Parkinson’s “is a disease that is so difficult to manage because it manifests itself in a thousand ways, so much so that it appears to have a lot to do with Parkinson’s disease.”

Therefore, a large part of the consortium’s commitment goes to information, communication and training for the population, “first and foremost so that it recognizes the alarm bells of disease, because catching them means starting treatment as quickly as possible and extending life expectancy and quality.” This informational work should be directed at the general public, but for Melisi, also at people with Parkinson’s disease, “because disease sometimes causes people to stop working, but in this way valuable opportunities to improve the course of the disease itself are lost.”

For Melici, the system instead needs, among other things, “coordination and flexibility”, as well as the ability to “avoid unnecessary visits or organize more visits than planned if something changes and demands it”.

from guests Camerae Sanitatis So there is a great deal of attention being given to caregivers. but by senator Paula Bennetti There is no good news regarding the bill on the subject, which is now stranded in the Senate. The bill ended up — the senator explained — on the Labor Committee, probably because the majority of requests went to involve the Social Security sector. However, the task force has an infinite number of issues to deal with. Given the technical times, I have a strong skepticism that the bill for caregivers can pass.”

But Bennetti confirmed the Health Committee’s interest in this subject: “We will succumb to the temptation to convert part of it into amendments for inclusion in other bills with a safer, immediate and direct process,” he said.

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Then the senator talked about another important project that politics is working on, the PNRR. “One of the needs put forward by Pnrr was – he noted – to move the hub of assistance from the hospital to the district, creating two realities hitherto known only in some areas and primarily at an experimental level: community homes and hospitals in the communities, which would be preferentially devoted to chronicity and disability” .

For Binetti, if we want to ensure assistance in the district and in the patient’s home, it is nevertheless necessary to provide the district with staff and nurses but not only. “Management has to be multidisciplinary, we need neurophysical therapists and occupational therapists, for example.” Specialists who, in the case of Parkinson’s disease, “teach the patient how to manage and direct movements in order to mitigate their impact on the patient’s self-image and in order to accentuate their potential. Some patients may learn to eat or shave themselves.” Goals that may be important to patients but also to caregivers.

Giusy Pipitone intervenes on the need for increasingly specialized professionals, Highlighting Anin’s commitment to nurses and the need to “take care not only of the patient but of the family”. The caregiver, for Pipitone, “is a central and important resource for the NHS. It is a strategic resource for the care pathway. Caring for a caregiver means responding not only to an ethical demand, but to a civil and social demand as well.” This path, for Chief Anin, must pass through “targeted knowledge, empowerment, and training.” Hence Anin’s commitment, which began in 2019 with work to bring “greater knowledge and awareness to those dealing with the day-to-day management of the individual at home”.

The goal, also for Pipitone, is “to have more and more nurses trained in caring for patients’ specific problems in neurology, so that the patient is as proactive as possible in their path of care and the caregiver is increasingly supported.”

Lucia Conti

June 22 2022
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