Alzheimer's, you need empathy, communication and respect to deal with the disease

Exclusively for Vanity, three protagonists from the world of care tell us how an aspect of health considered increasingly important at all levels is changing, and must continue to change: communication between the person suffering from Alzheimer's and their caregivers.

Let's start with Paola Barbarino, CEO ofAlzheimer's Disease International, and therefore number one in the international organization that deals, at a global level, with one of the most pressing emergencies of our times, namely cognitive decline. An organization to which Paola Barbarino is giving a new imprint. In Krakow for example, where the 36th Global Conference will take place from 24 to 26 April, ample space will also be given to the meta-narrative of the disease. Among the other creative contributions that will be shown to the public, there will also be the award-winning Italian short film Mamamafeaturing an elderly woman suffering from Alzheimer's, who talks live with her family and with a rag doll that she believes to be her daughter.

«The way people talk about dementia», explains Barbarino, «has largely been influenced by the stigma surrounding the patient's condition. A negative suggestion that makes life difficult even for those who care for them. Negative attitudes are found even among professional healthcare workers. Think that, in the world, as many as 62 percent of healthcare professionals still believe that dementia is a normal aspect of aging. My organization is very committed to demystifying these issues. We have launched a challenge to the very perception of dementia, trying to actively and positively communicate the fundamental messages. Alzheimer's is a disease, not a consequence natural of old age to be accepted with resignation. We must aim to maintain a good quality of life for as long as possible. Only by accepting the fact that Alzheimer's is a disease like any other can we make progress in diagnosis, treatment, care and support.”

Therefore information also plays a decisive role and the patient's right to happiness, so to speak, must be placed at the center of treatment.
“Certain. The fight against Alzheimer's is one of the great emergencies of the century and information helps us make the effort we make to beat it truly unanimous. The information must first of all be correct, but also accurate and must be able to promote empathy and trust. The patient, and those who care for him, must know that they are not alone and should no longer feel alone. That their well-being is our goal. We need to start thinking only in terms of people, and not of sick people. It is essential to be aware that the person suffering from dementia has their own feelings, their emotions. And that those who care for them will need empathy, as well as practical support, to face an incredibly complex path.”

What can we all do to contribute to this collective effort?
«We are increasing our efforts, encouraging people to express themselves through their ability to vote. In 2024, over 2 billion voters will be called to the polls around the world and we invite them to ask that their candidates make dementia a priority, because the numbers of this disease are such that they affect us all. New therapies are also on the way, but they won't work for everyone. Assistance is still the most important tool we have. And strengthening primary health care systems and helping family caregivers is still what we must fight for.”

But what is the state of the art regarding dementia at an institutional level in Italy? We ask Senator Barbara Guidolin, a former OSS who has been dealing with this topic for years.
«I entered the Senate in 2018 and, coming from the trenches so to speak, I immediately perceived the distance of these buildings from everything that revolves around the social-welfare world. Together with other colleagues I tried to reverse this trend. The address and financial coverage of the laws that then come put on the ground on the territories they start from here, but they do not always have a homogeneous effect throughout the national territory, because our National Health System is too fragmented. Correct communication of the results obtained at a national level would be vital to positively inform the many citizens whose existence has been overwhelmed by this disease, so that they monitor the work of local administrations. An example above all: the money allocated for family caregivers, the so-called curacari. We have created a national fund, then distributed to the Regions, to be allocated to the support of those who take care of a family member. Unfortunately, not all regions have made the best use of this money or even not at all. For this reason, communication, awareness, correct information, also in terms of rights, is very important and can only help those involved in politics, so that they in turn communicate on the issues of care with competence and empathy.”

We conclude with the words of Professor Amalia Cecilia Bruni, an internationally renowned neuroscientist, who discovered the early Alzheimer's gene in the 1990s: «Communication is a fundamental process in the doctor-patient relationship. It always is and in all pathologies, but in the case of dementia-related diseases it becomes fatal. I want to underline what communication is he must not be: anonymous, technical, aseptic, asphyxiated, impersonal, rapid (if not hasty), done only out of duty, simplified, disinterested in the person and the family. We have to ask ourselves: what is it the sense of communication? Create a tool of knowledge and help for patients and families, which can serve to accompany them on one of the most difficult journeys. Communication must be a longitudinal process, it must be distributed, grow and become increasingly refined over time, it must be, in practice, a way to take patients and their families by the hand and follow them step by step. The dogma must be: respect for the person. Naturally, the doctor's competence is necessary and indispensable, because only this can generate empathy and make the doctor-patient dyad solid. But there is one last ingredient that must never be missing: humility, because it is good that we doctors are the first to be aware that we are not infallible.”