In Italy, rising dementia rates and an ageing population are exposing the painful consequences of an absent state & More News Here

“My mother was always an active woman. She was a teacher, headmistress and then mayor of her small town. She was the first to notice that something was wrong. She was halfway through a newspaper article when she realised that she had already forgotten the beginning.”

This is how Maria Paola Mattolini describes the tragic second when her 70-year-old mom Giuditta realised that her mind was now not functioning because it used to. After a couple of checks, a neurologist suspected Alzheimer’s sort dementia however couldn’t diagnose it with certainty as the illness was nonetheless in its early levels. Just a few years later, the prognosis was confirmed. “The doctor told us right away that there was no way to reverse the trend, but she did tell us what we could do to slow down the decline and allow my mother to live as peacefully as possible.”

Ten years have handed since that day. Five years in the past, Maria Paola’s dad and mom moved in along with her in Milan as a result of her father was now not in a position to take care of her mom alone. “With time I realised that it’s not true that people with senile dementia become like children,” says Maria Paola. “They obviously lose cognitive abilities but they remain anchored in their lived experience, even if they are unable to fully understand it. You have to draw on this experience to make the person feel valued and not completely lost. But the further it advances, the harder it becomes to appeal to their identity.”

The newest report from Alzheimer Europe (Dementia in Europe Yearbook 2019) estimates that round 1.3 million individuals in Italy have dementia, the most typical trigger of which is Alzheimer’s (50 to 60 per cent of circumstances). The prevalence of these illnesses will increase sharply with age.

Italy already has the highest median age (46.7 years) and highest share of aged individuals (22.8 per cent of the nation’s population is over 65) in Europe. Taking present ageing tendencies into consideration, the report estimates that over 2.2 million individuals in Italy will likely be dwelling with dementia in 2050, nearly double the present quantity. As for Europe as an entire, the report predicts that the illness will have an effect on roughly 18.8 million individuals by 2050, or 3 per cent of the population.

“These are very chilling figures, especially when you realise that for every patient suffering from this disease, an entire family is affected,” says Patrizia Spadin, president of the Associazione Italiana Malattia di Alzheimer (AIMA). “Millions upon millions of people bear the enormous emotional, psychological and economic burden of caring for people with dementia on a daily basis.”

Patients and caregivers left in the lurch

Faced with such alarming figures, Italy has finished far too little. “Patients and families face multiple problems. There’s no real care, there aren’t enough services for patients and there’s no information on those services that are available,” says Spadin. “Centres specialising in dementia are few in number and poorly distributed throughout the country. It often takes 12 to 14 months from the time the first symptoms are reported before a diagnosis is made. By this stage, the specialist centres can do little more than prescribe medication and carry out routine check-ups every four or six months.”

Associations are criticising the absence of a nationwide technique for coping with the illness. “We have 20 different regional systems. Someone who falls ill in Sicily will receive less aid than they would in Lombardy. This is unacceptable. Once families have begun the long and complicated process of diagnosis, they are left to bear the burden of the disease on their own,” says Mario Possenti, secretary basic of Federazione Alzheimer Italia.

Italy’s National Dementia Plan, a public well being doc that gives strategic pointers for bettering care in the dementia sector, was first handed in 2014 however languished for years with no funding. Finally, in late 2020, €15 million was allotted to the plan over a three-year interval. “We are finally getting some good news, but it’s still a pittance compared to the enormous costs of the disease,” says Possenti.

A 2016 examine performed by AIMA and Censis (the socio-economic analysis physique) put the common annual price of a dementia affected person at round €70,000.

The estimate combines direct prices (akin to medicine and outpatient companies) and oblique prices (akin to misplaced earnings and casual assist). Italy’s National Health System covers solely a fraction of these bills: 30 per cent of direct prices, which themselves characterize 25 per cent of whole prices. The oblique prices, which characterize three quarters of the whole, are borne totally by households, who find yourself paying greater than 90 per cent of the price of the illness.

Maria Paola receives solely 5 hours of occupational remedy per week for her mom and one hour of psychological assist for her household – and she lives in Lombardy, the place spending on dementia is comparatively excessive in comparison with different areas.

“Fortunately, my parents have a pension which allows us to afford in-home care,” she says. “This disease has a very high economic cost for the families because the person can never be left alone. Sometimes, even in the initial stages, they turn on the gas for no reason, or they confuse the oil and the soap. But how do the people who can’t afford this support get by? It is unacceptable that low-income families are left to suffer this tragedy without being given a moment’s respite.”

“It’s as if providing assistance for these people were not a matter that concerned the National Health System,” says Spadin of AIMA. “Without voluntary work and third-party caregivers, there wouldn’t be a whole range of psychosocial services, most of which cost money. And a lack of state monitoring opens the door to all kinds of scams. People invent bogus therapies and take advantage of situations where families have been abandoned and are suffering.”

Unlike many European international locations, Italy gives little or no assist to caregivers, many of whom depend on associations for assist. “We received a large donation and contacted social services in the neighbourhoods of Rome to identify families with the greatest need in order to provide them with support,” says Luisa Bartolini, president of the affiliation Alzheimer Uniti Roma. “The Lazio region has passed a few laws for caregivers. Things are starting to move in the right direction but the regions are proceeding in a haphazard fashion.”

A heavy burden on girls

With coordinated assist constructions missing, the devastating burden of dementia is borne primarily by girls. The causes for this are two-fold, as Possenti explains: “Since women have a greater life expectancy, they statistically suffer more from dementia […]. At the same time, in a country as deeply chauvinistic as Italy, the burden of care almost always falls on women, who are often forced to give up their jobs, which further exacerbates gender inequality in our country.” With solely 50 per cent of girls in employment, Italy ranks second to final in Europe (common 68 per cent), forward of solely Greece (47 per cent).

The pandemic has solely made issues worse for individuals with dementia and their households. According to estimates from Italy’s National Institute of Health, 20 per cent of Covid-19 deaths occurred amongst individuals with dementia. This is essentially as a consequence of difficulties in adhering to hygiene measures and as a result of most of the sufferers had been housed in residential amenities the place ranges of transmission had been excessive. “Those who did survive were isolated for two years. Interaction with loved ones is essential to slowing down the progression of the disease,” says Possenti. “The pandemic has decimated an already vulnerable population, not just the disease itself but above all by the lack of targeted social policies,” says Spadin of AIMA.

“The hardest thing is that people with dementia are less and less able to make themselves understood. My mother had a stomachache but she couldn’t explain it,” says Maria Paola. “There are no specialised medical centres for people who are no longer able to express themselves. It’s painful because it shows the degree to which, from a certain point of view, patients and families are completely abandoned. It’s up to us to deal with everything on our own, to assume responsibilities that we shouldn’t have to. But there is no one else to turn to in such cases.”

Dementia is the seventh main trigger of loss of life in the world and one of the primary causes of incapacity and dependency for older individuals. The newest report printed by the World Health Organization (WHO) exhibits the pressing want to extend efforts at the international degree.

The quantity of sufferers is rising steadily: at present estimated at 55 million, it’s anticipated to extend to 140 million by 2050. But as the report factors out, solely 1 / 4 of the world’s international locations have a dementia plan in place, half of which are in Europe. The financial and social prices of dementia are estimated at US$1.3 trillion and are anticipated to double by 2030.

“In order to provide effective care for patients, we need a structured national network that brings together primary care physicians, diagnostic centres, occupational therapists and associations,” says Possenti. “This would be useful for society as a whole and for the health care system, which would have official data to monitor and improve available services.”

“The state needs to understand that we are talking about a serious disease with a devastating social impact,” says Spadin. “So many families are on the brink, exhausted by years of providing assistance. Caregivers lose their economic resources and even their health. We need to find solutions that meet their needs, because what we have now is a ticking time bomb.”

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