Silent, yet so present in the eyes and hearts of those around him, hoping to be recognized in a glimmer of lucidity. There are over 600,000 Alzheimer’s patients in Italy (78% over the age of 80), a probably underestimated figure and around which almost 3.5 million caregivers engaged in assistance revolve. For them, World Alzheimer’s Day, which is celebrated on 21 September, is an eagerly awaited event because it represents an opportunity to come out to ask and receive help. Many initiatives in every part of Italy and online. Among the many that of Aima, Italian Alzheimer’s Disease Association, which provides a network of 15 psychologists ready to offer free interviews to the families of patients affected by the disease for 12 hours. The service will be active from 9 to 21 with 45-minute interviews that will take place in streaming. We asked Patrizia Spadin, founder and president of Aima, to anticipate some of the questions that most frequently come from families and the answers that psychologists provide.
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Repetitions and forgetfulness
“My father always repeats the same things and forgets, a few days ago he did not come home, he did not answer the phone and my brother went out to look for him: he was in a street nearby looking into space and did not know where to go. Do?”. This is the question that comes to Aima’s Alzheimer’s Green Line from a woman from Rome. “Our first suggestion – explain from the Association – is to contact the general practitioner, who is able to evaluate the cognitive condition through a general visit, an interview and the administration of specific tests. formulate a first diagnostic suspicion and direct the person to a Center for Cognitive Disorders and Dementias where a multidisciplinary team of professionals carry out the diagnosis by subjecting the patient to examinations and investigations including in-depth neuropsychological evaluation “.
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Fatigue of the caregiver
Many requests for help come from family members who take care of patients with Alzheimer’s. “I have been assisting my father for two years and I am alone, because my brother does not take care of it: he has never gotten along with my father. His mother is gone, he has always had a bad temper and I, with all my I struggle, even to navigate between him and my children, I can’t take it anymore. I would like to give up everything and go away “, Luisa writes. In fact, those who turn to the Green Line are often a family member who has postponed a request for help for a long time. “Tiredness, sense of guilt, anger, feelings of helplessness are the many aspects of the experiences of family members who try, at any cost, to succeed in the task of caring for their loved one”, explains Spadin who adds: “Those who take care of people suffering from dementia is exposed to a fatigue that is expressed not only from the physical and welfare point, but also and above all psychological. caregiver burden expresses the burden of psychological, physical and social needs, determined by daily assistance, which weighs on the caregiver. “The association offers information but also individual and group counseling to reduce the negative effects on family members, but also to improve success of the care task.
Does the new drug approved in the US work?
There are also many requests relating to the approval of Aducanumab: “I read about a new drug for Alzheimer’s: even if it is experimental, I would like to give it to my mother. So much, it can’t get worse than this”, writes Francesca to whom, however, Aima cannot give good news: “Unfortunately , at this moment in Italy there are no pharmacological news available for our patients. The active drugs that are prescribed are about 20 years old, act on the symptoms and help the patient to maintain residual capacities for a few years. On the new drug approved by the FDA Further tests have been requested and in any case it can be administered only in a very initial phase of the disease, indeed when the disease is not yet full-blown and one wonders if our system is capable of making such early diagnoses, but it is certainly progress “.
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To ask questions and receive answers, you can book appointments with psychologists by calling the Alzheimer Green Line 800 679 679 or by writing an email to [email protected], to indicate the time in which you want to hold the meeting. On 21 September there is also a live streaming on social networks full of events not to be missed, with documentaries, videos and interviews with authoritative representatives of the world of science and research, interventions by artists, family members and spokespersons of local associations.
The path of research
Despite all the limits already raised by several parties on the real effectiveness, costs and side effects, the approval of Aducanumab still represents the first step towards a therapeutic solution and brings out the urgent need to equip oneself with one or more diagnostic tools capable of intercepting the earliest stages of the disease where a therapy of any kind could give the best answer. Two scientific projects that see Italy at the forefront go in this direction: Interceptor, financed by AIFA and the Ministry of Health, e AI-Mind, a European research project conducted by an international consortium involving the Irccs San Raffaele of Rome and the team of Professor Paolo Maria Rossini, director of the Department of Neuroscience and Neurorehabilitation of the Irccs San Raffaele in Rome: “The use of integrated biomarkers and artificial intelligence, capable of extracting the early imprint of an evolving disease from a huge avalanche of data – explains the neurologist – will allow in the near future to identify people at high risk and to implement immediately all the pharmacological and non-pharmacological contrast procedures against this terrible disease “.
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The “Airalzh Grants” for young researchers
The activity of Airalzh Onlus (Italian Association for Alzheimer’s Research) also points in this direction, which every year assigns young researchers Airalzh Grants for Young Researchers. The latest funds awarded have focused on identifying the early stages of Alzheimer’s disease. Just six months after the winners of the last competition were announced, the studio of Alberto Benussi, operating at the Neurological Clinic of the Civil Hospitals of Brescia, was published in Brain Stimulation. The multicentre study analyzed the results of a non-invasive test – Transcranial Magnetic Stimulation – on 160 subjects with mild cognitive impairment and demonstrated how it is possible to identify and distinguish between three particular severe forms of dementia thanks to a specific algorithm. The next projects of the 2021 Call, published at the end of May with a budget of 300,000 euros, focus on the protective role of lifestyles and habits (healthy, dietary and social) that can delay the onset of symptoms or reduce risk. of onset of other chronic diseases. 62 applications from young researchers were received and the winners will be announced by the end of 2021.
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Covid-19 can accelerate the symptoms of dementia
Research is also crucial to investigate the neurological impact of Covid-19 infection on the brain and understand whether – as recent research presented at the 2021 edition of the Alzheimer’s Association International Conference – it can increase the likelihood that a person will develop a form. of dementia, but also accelerate symptoms and worsen the condition of the disease. The Alzheimer Italy Federation is the spokesperson in Italy for the appeal that its international partner Alzheimer’s Disease International (ADI) launches to governments and research institutes so that research funding is given absolute priority to investigate and deepen the link between Covid-19 and dementia with the #KnowDementia #KnowAlzheimers campaign.
“Don’t forget to love me”, a song for Alzheimer’s patients
The appeal of Lorenzo Baglioni and Paolo Ruffini
Among the many initiatives for World Alzheimer’s Day there is also the song Don’t forget you love me, composed by the Tuscan singer-songwriter Lorenzo Baglioni together with the actor Paolo Ruffini. It deals with the delicate process of loss of memory by a person affected by dementia, one of the most dramatic aspects that touches anyone who lives with this disease. The two artists have chosen to donate the song to Alzheimer Federation Italy: a real campaign entitled #Nontiscordaredivolermibene was born from this gesture. On the dedicated page nontiscordare.org, in addition to information on the disease, it is possible to register and take a test with 10 questions to test one’s knowledge about dementia and receive a real certificate that certifies the commitment and achievement of the title of “Friendly Person of Dementia”. Don’t forget you love me is available on all major streaming platforms. The proceeds from the sale of the song will be donated entirely to the Alzheimer Italy Federation.
“Grandma on the blue planet”
The De Banfield non-profit Association of Trieste also focuses on art, which presents the book on the occasion of World Alzheimer’s Day Grandma on the blue planet. Tales of lost memory, which collects the best 30 stories of the second edition of the homonymous National Literary Competition conceived and promoted by the Association, won this year by the story of the film, theater and television actress Daniela Poggi, Rosa’s world. In the book also poetry behind a glass that the very young standard-bearer of the republic Mattia Piccoli, aged 11, the youngest caregiver in Italy, dedicated to his father, suffering from precocious Alzheimer’s. Over 130 stories from all over Italy have arrived at the competition in recent months: among these, the jury chaired by the philosopher and writer Michela Marzano has selected the best stories that have now become a book, published by Pendragon Editions, available in all the stores of the Coop libraries. Presentation on Tuesday 21 September for World Alzheimer’s Day in the public conference scheduled in Trieste Writing and curating: the voice of caregivers (6 pm Palazzo Gopcevich), a meeting on the therapeutic importance of writing.
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‘Alzheimer’s stop’
Among other initiatives for the month of Alzheimer’s are those of the Korian group that organizes Alzheimer’s stop, a free webinar aimed at caregivers of people with dementia. The path structured in six thematic stages aims to equip caregivers with some essential tools to assist a person with dementia, or learn to identify those that may be the first signs of the onset of the disease. More information is available on the page www.korian.it/fermata-alzheimer-online/. Another initiative is the one organized by the Campania sections of the Sin Association (Italian Society of Neurology) for Dementia (SINDem) and the Italian Association of Psychogeriatrics (AIP) which meet patients, family members and associations in a round table on 21 September at 9.30 at the Federico II University of Naples.
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