In an aging Italy, cognitive disorders and dementia are a growing and increasingly feared social and health emergency: 9 out of 10 Italians are worried about themselves or that a loved one may suffer from it in the future, fearing above all the loss of autonomy, isolation and the emotional and economic burden on the family unit, also due to the lack of social-assistance services, feared by over 70% of citizens. These are some of the data that emerged from a survey carried out by the research institute ‘Emg Different’ on a sample of a thousand Italians between the ages of 24 and 75, which investigated the level of knowledge on cognitive decline and dementia, bringing to attention citizens’ perceptions and information needs. The research was presented today in Milan during the event ‘Cognitive decline and dementia: how much we know, what we are doing and what impact on society and the National Health Service’, promoted by Neopharmed Gentili in the month dedicated to Alzheimer’s, the most widespread form of dementia, whose World Day falls on September 21.
In our country – we read in a note – cognitive decline and dementia affect 2 million patients and, consequently, 4 million caregivers. It is estimated that over 1 million people suffer from dementia (of which 600 thousand with Alzheimer’s disease) and another 900 thousand are affected by live cognitive decline, also known by the English acronym Mci (Mild Cognitive Impairment). This is a clinical condition characterized by the worsening in one or more cognitive domains (memory, attention, language) that does not compromise normal daily activities, but on which it is necessary to act promptly because in about 50% of cases it progresses to dementia within 3 years.
A challenge, therefore, to be faced with early diagnosis and targeted interventions, but also by promoting knowledge and the fight against social stigma. Italians agree (93%) on the need for greater information on the subject: despite the growing awareness of cognitive disorders, which for 97% of the population constitute a serious problem for families and society, almost 1 in 2 Italians (46%) declare that they do not know that prevention is an ally in combating cognitive decline, and only 29% are aware of the possibility of intervening on the course of the disease with adequate treatments. The impact of dementia on healthcare costs should not be underestimated, with 63% of the costs being entirely borne by families. “With the increase in life expectancy, dementia is destined to acquire ever greater relevance – says Camillo Marra, president of Sinfem, an autonomous association adhering to the Italian Society of Neurology for Dementia – Today, 7% of the population over 60 suffers from it and the percentage rises to 30% in those over 85. Preventive intervention in preclinical forms of dementia is crucial to counteract the progression of the disease”.
It has been highlighted that “an intervention on all modifiable risk factors, between the ages of 40 and 60 – continues Marra – could reduce the evolution of mild cognitive decline into dementia by 40%. This means acting on smoking, alcohol, a sedentary lifestyle, diabetes, hypertension, dyslipidemia, but also on aspects related to sociality. Low vision and hearing loss not recognized in adulthood are other risk factors that should not be underestimated. But ‘real’ prevention begins at school, reducing the dropout rate to act on a key protective factor represented by the cultural level: the more educated we are, in fact, the more we are able to feed the cognitive reserve for when we are old. Even on the therapeutic front, the more we intervene in the early phase, even limited to the treatments available today, the better we can modify the course of the disease”.
At the onset of cognitive impairment, the person is autonomous, can continue to work, drive and carry out usual activities, even if he or she begins to show signs that should represent alarm bells. However, despite a broad awareness of the symptoms, found in over 90% of interviewees, it is not always easy to perceive them on oneself or a loved one. “Mild cognitive decline is a clinical picture that requires the utmost attention – explains Alessandro Pirani, representative of the Simg (Italian Society of General Medicine) at the permanent Dementia table of the Ministry of Health – because it represents the early diagnosis phase and directly involves the general practitioner. The disturbance of memory capacity is the most striking sign, but it is often ignored or belittled due to the stigma that ‘relegates’ it to a normal aspect of aging. Other warning signs are the appearance of depression, changes in character, the tendency to lose the thread of speech. Furthermore, as the disease progresses, behavioral disorders appear: insomnia, oppositional behavior (the patient does not eat, does not allow himself to be washed), physical and verbal aggression. The stabilization of these symptoms, which cause strong emotional stress in family members, is a priority and decisive care objective for the purposes of managing the patient at home”.
The repercussions on the family unit are among the main concerns of Italians: for over 90% of those interviewed, caring for a patient with a cognitive disorder is a source of stress and affects the economy and social life of the entire family. “Dementia is not a condition to be accepted with resignation – warns Piero Secreto, member of the Technical-Scientific Committee for the guidelines ‘Diagnosis and treatment of dementia and Mild Cognitive Impairment’ – A shared commitment is needed, also in terms of informing the public, to overcome prejudices towards elderly people and fight the social stigma that still accompanies the disease”.
The guideline “fills a cultural void with respect to the possibility of implementing a series of interventions that concern the diagnosis, treatment, care and support of patients, to put them in a position to maintain a good quality of life. A novelty with respect to the international guidelines – Secreto specifies – concerns the inclusion of mild cognitive decline alongside dementia, confirming the value of early intervention on the evolution of the disease and on the overall well-being of the patient”. Caring for a person with dementia “is a heavy commitment that falls almost entirely on the family unit, on a psychophysical, social and economic level – underlines Donatella Oliosi, president of the Diana Onlus association, the association for non-self-sufficient rights – and it is understandable that this is one of the aspects that most worries Italians regarding the possibility that the disease could strike a loved one. This is because, although they fall within the competence of the National Health Service, as chronically ill patients, families do not receive sufficient services and adequate support from local health services: in many cases, day centers represent a relief for families, but they should be sized on the basis of real need, just as access to the facility should be guaranteed in a uniform manner for those patients who can no longer be cared for at home. Patients and families must be welcomed and accompanied in the care that is the responsibility of the National Health Service”.
Currently, “64% of patients with dementia are not in the care of social and health facilities,” says Paolo Sciattella, a pharmacoeconomist at the University of Rome Tor Vergata. “This figure gives an idea of the burden of the disease on patients’ families, not only in terms of care, but also in terms of finances. About 63% of the costs for managing and treating patients are completely borne by the patient (out-of-pocket spending), equal to 14.8 billion euros out of a total annual expenditure of 23.6 billion euros. Added to this are the indirect costs related to the loss of productivity of caregivers, quantified at 4.9 billion euros, which mainly affect non-institutionalized patients.”
The month dedicated to Alzheimer’s is “an important opportunity – says Daniela Rossi, co-general manager of Neopharmed Gentili – to shine a spotlight on cognitive decline and dementia, pathologies that deserve special attention due to the impact they have on families and the high level of care complexity. Neopharmed Gentili’s commitment is aimed at improving people’s quality of life, especially during aging. For this reason, we believe it is essential to promote awareness among citizens, inform them of the importance of prevention and early diagnosis and dismantle the prejudices that distance patients from their treatment path, conveying a message of closeness, inclusion and trust for a better quality of life”.
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