RIcevere a diagnosis of Alzheimer’s is like being in front of a canvas full of bright tones, Suddenly discovering that slowly those colors will be faded. In the past, knowledge was scarce and that judgment came as a sentence when the clinical picture was already at an advanced stage. But things have changed. «Research has recorded significant progress and, although there is still no definitive care, the experience of patients shows day by day which, even if this condition places enormous challenges, Life does not stop when that Parol is pronouncedA »underlines Katia Pinto, president of the Alzheimer Federation.
Act in advance on Alzheimer
First of all,”The more we intervene in an early stage, the better to change the course of the disease»Observes Giovanna Zamboni, professor of neurology of the University of Modena and Reggio Emilia, winner of a specific research call from theEuropean Research Council. “Thanks to the use of Alzheimer’s disease biomarkers, today it is possible to put a precise diagnosis from the pathophysiological point of view Even when cognitive disorder is mild and does not interfere with daily activities ».
Paola Barbarino, CEO of ADI – also confirms this – Alzheimer’s Disease International (International Federation of Associations of Alzheimer’s and dementia from all over the world): «When the news arrives, families and patients are upset. Instead it is important to know that there are still many things to do And that could pass the years before the cognitive decay becomes important. Dementia, in fact, often evolves within a few years, which can go from three to ten or even more ».
The brain still has something to say
The timeliness of the diagnosis, combined with specific drugs, cognitive therapies And changes in lifestyle can improve or maintain stable cognitive functions longer. «Activities such as reading, solving enigmas or crossworders or learning new skills can stimulate brain plasticity. This means that even if some areas of the brain are affected by the disease, others can compensate, helping the person to maintain a good ability of thought and memory »Specific Barbarino.
From a practical point of view, the reorganization of the spaces at home is equally important. Where possible it would be better not to vary the furniture and common objects: «changes in the environment can cause disorientation. It works well to use labels with words or images on the doors or wardrobes to facilitate people in finding autonomously what is needed. As well as positioning large watches and calendars in visible places to help them orient themselves over time ». Furthermore, “in the most advanced phases it is recommended to eliminate mirrors: people could experience anxiety or fear if they do not recognize their reflected image”.
Support sociality
“Continue to attend your community, carry out your habits and participate in social opportunities are activities that have a positive impact on the quality of life and can help slow down the advance of the disease” adds Pinto. In 2016 the Alzheimer Italia Federation launched the “Friendly Community of People Community with Dementia” project, That today are over fifty. These are countries or neighborhoods where shops and offices are made more welcoming, with a facilitated billboard or “quiet” corners where you can sit down (for info on the project Dementiafriendly.it).
The pleasure of a cup of tea
Living with the disease can mean, therefore, accept gradual changes without fixing on the concept of loss. This was testified by the story of Adele Spada, 72 years old. “My mom was known for her luxuriant vegetable garden and flowers that cultivated with care,” says her daughter Lucia. «Then things started to change: small empties of memory, difficulty in remembering names, and a growing sense of loss. The moment of the diagnosis was terrible. The fear of the future, of the inevitable progression of the disease, paralyzed us». However, today, five years after that diagnosis, Adele continues to live a life full of meaning, although with limitations. «We have tried to set up a daily routine for her that includes the activities she loves: Short walks in the garden, light work in the garden, readings of poems and photographs that help her keep the memory alive». Adele no longer remembers all the dates as once, but it remembers what matters: his love for nature, the faces of his loved ones, the pleasure of sitting in the sun with a cup of tea. “The progression of the disease was slower than we expected, showing us every day that existence can still offer moments of beauty and connection”.
Be (again) masters of one’s life
«The communication of the diagnosis to the sick person is a very delicate, but not procrastinable passage»Marco Trabucchi, former professor of neuropsychopharmacology at the University of Rome” Tor Vergata “, scientific director of the Geriatric Research Group of Brescia, and president of the Italian Association of Psychogentria, specifies. «Taking awareness of one’s condition is a fundamental step to start a care path. The hesitation do not help. “Today, then, the onset of the illness does not concern only over 65, but can also involve adults of forty or fifty years. “The sharing of the diagnosis is even more important with those who are in the midst of their professional life, in front of many years of projects and responsibilities, still has young children” specifies Pinto.
The well -being of the caregiver
Alzheimer deeply touches the lives of those who, day after day, become the main custodians, the so -called caregiver. “It is essential not to forget that support exists – underlines Barbarino – and looking for it is not a sign of weakness, but an act of care also towards oneself. Furthermore, More and more research show that the well -being of those who pay attention to a patient of dementia has a direct impact on patient health “. The available resources are different: support groups, associations that offer consultancyhome care services and psychological listening spaces. The Sant’Orsola Foundation of Bolognafor example, promotes a laboratory of Music therapy for patients with Alzheimer and senile dementia. One of the characteristics of the project is the involvement of relatives, who participate in group meetings led by a psychologist.
The “Alzheimer’s coffee” are also important, widespread throughout the national territorywhich offer group meetings, expert interventions and recreational activities for those who live with this disease (own or a family member). “They represent a very low cost service that has been shown to be very useful,” concludes Trabucchi. “THEThe particular towards the caregiver that is helped on the psychological level to face the complexities of the assistance of a patient And the stress that accompanies these experiences ». So wrote Marco Annicchiarico in a 2022 book always current Dear curatorships (Einaudi): «From the outside everything seems normal: the surname on the door, the golden bell […] Instead at home the books and objects disappear, which Lucia hides in the most unexpected places, and more and more signs appear: bathroom, kitchen, room, cutlery, tablecloths, medicines ». The journalist and poet telling the painful story of the caregiver of the mother Lucia concludes: “If love is always made of nuances, gestures and even omissions, that between a mother with Alzheimer’s and the son who takes care of her can be a new, thorny, creative and stubborn love like no one else”.
How to talk about Alzheimer’s for children
When a problem of dementia bursts into the family, keep the little ones in the dark, with the intent to protect them, causes the opposite effect. Federation Alzheimer recommends not to pretend that everything goes well: the children ask immediately why grandparents no longer go to school, because they always ask the same questions and they no longer remember how to do that game who always did together. “Already at three – four years of age have cognitive resources to understand, just use the right words,” says the president. Furthermore, children have a way of communicating and relating that facilitates the relationship. More info in the book Dear grandmother on the site alzheimer.it
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