Neurology and territory, Sno: "In Italy Caragiver too alone, a network is missing"

In Italy there is a problem of taking charge of the patient with cognitive decline, whose management, most of the time, is mainly delegated to the family member (or caregiver), who however is not supported by a solid network and feels lost in having to deal, often alone, with complex situations. This is also because, in fact, in our country, there is a lack of real integration between territory and hospital. The topic was addressed during a session that took place on the occasion of the 62nd National Congress of Hospital Neurological Sciences (SNO), scheduled in Florence until tomorrow, at the Palazzo degli Affari.

Dr. Carla Zanferrari, director of the Neurology Department – ​​Stroke Unit at ASST Melegnano Martesana (Milan), spoke about this issue. "In fact, it is the caregiver who bears an increasingly greater burden of the disease and feels alone in managing the family member," she said. "Beyond the periodic visits the patient with dementia undergoes, in fact, the caregiver has no points of reference to support them in their daily routine, which is extremely tiring."

As the pathology develops, therefore, the network around the patient "but above all the family member or caregiver" becomes increasingly important. For these pathologies - Dr. Zanferrari underlined - support on psychosocial aspects is equally important as well as on health aspects in the strict sense.

The first point to address, according to the neurologist, is therefore to facilitate accessibility. "For example, we have a dedicated email address that collects all family members' requests. A nurse is assigned to manage the request and, depending on the case, takes action, for example, by putting the family member in touch with the doctor based on their stated needs (for example, adjusting the dosage or bringing forward a checkup appointment)."

To further foster and accelerate communication, facilitating both the healthcare provider and the family member, telemedicine or the use of IT tools could play a key role. "Thanks to IT platforms, for example," he added, "sharing records between general practitioners and the CDCD (Center for Cognitive Impairment and Dementia) is facilitated. This way, doctors feel supported in making treatment decisions and no longer need to refer patients to a specialist clinic each time."

A second “fundamental” point to address is to activate training courses for caregivers, to “educate them and provide them with useful tools for the relationship with the family member, aimed at reducing or containing behavioral disorders. The person with cognitive decline - explained Dr. Zanferrari - has an altered perception, or rather, does not have a rational interpretation of what surrounds them, but predominantly emotional.

I'm thinking, for example, of 'sundowning syndrome': when there's a change in the lighting in a room, going from good light to dim light, the patient with dementia can become even more confused, restless, and anxious, as if they were walking in a fog.

“Other times, family members tell us that the patient wants to dress himself,” the expert said, “but he puts on a sweater under his shirt or socks of two different colors and they ask us whether or not it is right to correct him. Then we need to give the caregiver tools for managing and relating to the patient, because if the caregiver is relaxed and knows how to manage the situation, he or she will transfer tranquility to the patient.”

Another aspect to underline, according to the expert, is the lack of territorial support references. “For example, it is important to map the day centers present in the territory and collaborate with the family associations - Dr. Zanferrari said - which are fundamental because on the one hand they transfer the needs of the patients to us and on the other they support us in awareness-raising and collaboration initiatives also with the municipalities”.

A significant critical issue is the management of patients with cognitive decline in hospital. The expert's position on the matter is clear: "Hospitalization, unless strictly necessary, is always harmful to a patient with cognitive decline. It would also be crucial for at least one family member to be present," said Dr. Zanferrari, "because otherwise, pharmacological sedation is often necessary, and in some extreme cases, even physical restraints to protect the patient from harm to themselves or others."

In recent years, meanwhile, there have been several cases of patients suffering from cognitive problems or dementia who have walked away from hospitals or emergency rooms, some unfortunately with tragic outcomes. For this reason, family associations have put forward a series of proposals to the institutions, including recognizing small GPS locators as 'life-savers' to be used in hospitals to monitor and track patients who need them.

"These are useful tools, but even if the patient wears a bracelet that allows them to be geolocated, it could still be too late," the neurologist pointed out. "Doctors and healthcare workers who work in the emergency room have very tight schedules and find themselves having to manage many fronts in emergency situations. I would like to emphasize, then, that these patients should not come to the emergency room for behavioral disorders and one of the purposes of the support network around the caregiver should be the prevention of acute behavioral disorders."

Hospital and territory, in any case, should increasingly collaborate also to arrive at offering a homogeneous path on legal rights. "A thorny issue, today, is that which concerns the support administrator - the expert added - because the family members or caregivers almost never know when and how to activate it. And this is a problem, because if the patient with dementia needs a procedure and does not have a support administrator it can be difficult from a management point of view".

Finally, a look at the overall situation in our country. "Theoretically, we're in a good position," Zanferrari explained, "in that there are optimized protocols that define the priorities and needs of patients with dementia, and caregivers can refer to the Dementia Observatory of the Istituto Superiore di Sanità, which also periodically conducts surveys on the functioning of the various centers in our country. The specific centers to which patients can refer, which we've already discussed, are the CDCDs: there are approximately 700 in Italy, many located within hospitals, while others are distributed throughout the country, but unevenly across the different regions. There are also territorial and regional PDTAs (Diagnostic Therapeutic Assistance Pathways), which are very well written, but," he concluded, "they're not always translated into concrete reality."