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

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

In the absence of real public health policy addressing dementia, the emotional, economic and psychological burden of these illnesses falls mainly on the families of patients and on women in particular.

(Marco Marchese)

“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 moment when her 70-year-old mother Giuditta realised that her brain was no longer functioning as it used to. After a few tests, a neurologist suspected Alzheimer’s type dementia but couldn’t diagnose it with certainty as the disease was still in its early stages. A few years later, the diagnosis 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 passed since that day. Five years ago, Maria Paola’s parents moved in with her in Milan because her father was no longer able to look after her mother 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 latest report from Alzheimer Europe (Dementia in Europe Yearbook 2019) estimates that around 1.3 million people in Italy have dementia, the most common cause of which is Alzheimer’s (50 to 60 per cent of cases). The prevalence of these diseases increases sharply with age.

Italy already has the highest median age (46.7 years) and highest share of elderly people (22.8 per cent of the country’s population is over 65) in Europe. Taking current ageing trends into account, the report estimates that over 2.2 million people in Italy will be living with dementia in 2050, almost double the current number. As for Europe as a whole, the report predicts that the disease will affect roughly 18.8 million people 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 done 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 national strategy for dealing with the disease. “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 general of Federazione Alzheimer Italia.

Italy’s National Dementia Plan, a public health document that provides strategic guidelines for improving care in the dementia sector, was first passed in 2014 but languished for years with no funding. Finally, in late 2020, €15 million was allocated to the plan over a three-year period. “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 study conducted by AIMA and Censis (the socio-economic research body) put the average annual cost of a dementia patient at around €70,000.

The estimate combines direct costs (such as medication and outpatient services) and indirect costs (such as lost income and informal help). Italy’s National Health System covers only a fraction of these expenses: 30 per cent of direct costs, which themselves represent 25 per cent of total costs. The indirect costs, which represent three quarters of the total, are borne entirely by families, who end up paying more than 90 per cent of the cost of the disease.

Maria Paola receives only five hours of occupational therapy a week for her mother and one hour of psychological support for her family – and she lives in Lombardy, where spending on dementia is relatively high compared to other regions.

“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 countries, Italy provides very little support to caregivers, many of whom rely on associations for help. “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 association 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 women

With coordinated support structures lacking, the devastating burden of dementia is borne primarily by women. The reasons 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 only 50 per cent of women in employment, Italy ranks second to last in Europe (average 68 per cent), ahead of only Greece (47 per cent).

The pandemic has only made matters worse for people with dementia and their families. According to estimates from Italy’s National Institute of Health, 20 per cent of Covid-19 deaths occurred among people with dementia. This is largely due to difficulties in adhering to hygiene measures and because most of the patients were housed in residential facilities where levels of transmission were high. “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 leading cause of death in the world and one of the main causes of disability and dependency for older people. The latest report published by the World Health Organization (WHO) shows the urgent need to increase efforts at the global level.

The number of patients is growing steadily: currently estimated at 55 million, it is expected to increase to 140 million by 2050. But as the report points out, only a quarter of the world’s countries have a dementia plan in place, half of which are in Europe. The economic and social costs of dementia are estimated at US$1.3 trillion and are expected 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.”

This article has been translated from French by Brandon Johnson