Alzheimer's in Italy: expected doubling of patients by 2050 and rising costs for families

While Alzheimer's and dementia are rampant, Italy, with a 5% of the population affected among patients and caregivers, records - incredibly - a decrease in many of the main indicators of formal or informal caregiving. This is made clear, a quarter of a century after the first edition in 1999, by the 4th Censis-Associazione malati Alzheimer (Aima) Report on the economic and social impact of the disease after the Covid-19 pandemic. So much so that '25 years after the first research report we denounce an almost unchanged situation', warn Censis Welfare Manager Ketty Vaccaro and Patrizia Spadin, Aima president. "Ours," they continue, "is a long tale of substantial immobility despite the undeniable steps forward in knowledge of the disease and in research. The times, for example: from the appearance of the first symptoms to the diagnosis, an average of two years elapse, and there is no change in the proportion of just under half of the sample of those who report difficulties in the classification of symptoms by the doctors to whom they were first referred'.

The Censis-Aima Report, which for the first time also turns the spotlight on people with mild cognitive decline, reports a drop in the percentage of people assisted by day care centres: down to 10.3% of the total from 12.5% in 2015 and from the much higher 25% in 2006. The structural recourse to 'carers' is also decreasing: they are still mostly foreign women and not very professionalised, but less and less willing to live with the patient and more 'caring': so much so that they account for 75 per cent (it was 60 per cent in 2015) of the EUR 22,500 in direct annual costs attributable to an Alzheimer's patient. Among the few growing care data is that of volunteers: associations offering social-assistance services are now 18.3% compared to 2.4% in 2015, but users of specific centres in this area, such as cognitive stimulation workshops, are only 3.6%. While the share of patients benefiting from integrated home care and socio-assistance is only 15%.

More than half of patients (but up to 60% in the South, where the disadvantage of the South also stands out with regard to dementias) have never visited a Cdcd, one of the Centres for cognitive disorders and dementias, heirs of the glorious Uva (Unità di Valutazione Alzheimer's): a successful but discontinued experience, where almost 70% of patients were assisted in 2006. The proportion of patients who have been diagnosed in a Cdcd - where a treatment plan is obtained to access specific drugs for Alzheimer's - still stands at 27.9 per cent, and here too the geographical gap is pitiless, with 46.8 per cent of patients in the North and 20 per cent in the other areas of the country. Diagnosis time is another Achilles' heel: it is now two years from the 1.8 years recorded in 2015, although an improvement on the 2.5 years recorded in 1999 and 2006.

The picture in the 25 years that have passed since the first Censis-Aima survey appears little or not at all changed for those who, especially family members and especially women, take care of an Alzheimer patient on a daily basis. Territorial gaps, a network of services that is still not very widespread and insufficient home care that requires the use of caregivers, make 7 out of 10 caregivers say they feel alone. With 40 per cent admitting difficulty in following their family, spouse and children to be with the sick person. The pandemic has had an impact: for two-thirds of those interviewed, isolation has worsened both their loneliness and the condition of their sick loved one. It is therefore not surprising that only 36.2% of caregivers promote public care, with percentages again ranging from 23% in the South to 48.6% in the North.

If it is true that 89.2% of the caregivers in the Censis-Aima survey state that they can count on a single point of reference, what is new is the multiplication of responses: 17.2% indicate the family doctor, 15% the private specialist and the Cdcd while only 7.2% - from 35.6% in 2015 - indicate the Asl clinic.

So, the caregivers' demands are for legal protection at a national level - which has been talked about for years but is still being worked on - which also translates into possible remuneration for care work and training courses. And in the launch, at last, of a broad network of services present at all stages of the illness, flanked by an adequate network of support at home.

The identification in the population over 60 years old of people with mild cognitive impairment in the prodromal stage of dementia, or of those people who, while still substantially healthy, have a very high risk of developing dementia, represents one of the greatest urgencies in terms of health policies. This is explained by Paolo Maria Rossini, head of the Department of Neurosciences at the Irccs San Raffaele in Rome: 'We are talking about individuals who are in fact already ill with a very early form of the disease, but who are unaware that they are ill and who are still perfectly performing in the activities of daily, professional, social and emotional life: With the help of biomarkers of various kinds and artificial intelligence, doctors are developing methods to detect these individuals in time, i.e. before they manifest the irreversible and progressive symptoms of the disease. This could change the course of treatment, once new drugs against Alzheimer's, the most common form of dementia, become available, and also enable targeted and early intervention with the drugs available today and on the risk/protection factors that are already known'. This is crucial: 'Arriving earlier,' stresses Rossini, 'means intervening in a scenario in which a large part of the 'neural reserve', i.e. that endowment of neurons and synapses that each of us possesses and which can be drawn upon to at least partially replace the function performed by neurons and synapses destroyed by the disease, is still available and thus obtaining decidedly superior results in treating not only the symptoms, but also the evolution of the disease'.

This is why two international studies are underway: the first, Interceptor, compares the early detection capabilities and cost-effectiveness of different biomarkers in over 300 people with mild cognitive decline. It ended at the end of 2023 and the results are being processed by the National Institute of Health. The second is 'AI Mind': a European study on artificial intelligence and dementia financed by the European Commission with about EUR 14 million and in which Italy has no less than four operational units.

The expectations and expectations are enormous, especially on the part of those affected, and the Censis-Aima survey reminds us of this once again: the diagnosis of mild cognitive decline on the one hand sets people on a course of treatment based on the adoption of a healthy lifestyle and non-pharmacological therapies, with access to drugs and experimental protocols involving around 40% of patients, almost all of whom are followed in a Cdcd. 'But at the same time,' emphasise Ketty Vaccaro and Patrizia Spadin, 'it is a diagnosis that makes them live in constant fear of worsening. A future that many cannot even think about. While they have in the new drugs, which should be available soon, the only concrete hope'.