It is the key-word that opens the door onto the stairs which inexorably lead to hell. Alzheimer’s disease. The executioner, in a thriller with a thousand faces. Rather than a disease, it a “living mourning”. It kills the person, erases identity, dries up mind and soul, leaves only the resemblances of the human being who was once, but no longer is.
Living next to a person affected by Alzeihmer’s disease is a continuous funeral. It suffocates also the vital spirit of those who are close to them, day by day, seven days a week. This is the description given by Claudia Martucci, the president and founder of the Association Alzheimer’s disease Friends, the first no-profit organization of volunteers, that wants to offer support to the sick and the family members who assist them. The latter, in fact, are the forgotten – by society and the State – victims of this multiple tragedy. Lonely and bewildered in front of bureaucracy and of the economic and existential costs. Costs, that for some people are unbearable. Are uncountable the deaths of sick people affected by this terrible disease at the hand of close relatives, usually at the hand of the elderly spouses; some of them attempt suicide, some even succeed in it. As Paul Zanghi, 78 year old. A year ago, he killed his wife of 80 with a bill hook after yet another hospitalization, then he hung himself. It is not the only story, that degenerated into crime.
“It is a disease, that affects family”, says Claudia. In 2008, her father, Luigi, was found behind the door that marks the boundary between those who live and those who merely seem to do so. He was only 56. “He was still young, a strong man” she says. “At the beginning we smiled when he forgot the keys or the mobile phone, or the names of his friends. Then, as all the relatives of people affected by dementia, we went through fire”. Because Alzheimer’s disease is a fire, that burns the whole family. It transforms into cinders feelings, memories, and habits; it destroys lives.
“At the beginning, my father was aware of what was happening. He used to tell us: ‘I feel that my brain is present at 50 percent’. And this awareness of the fact that a piece of him was abandoning him day after day, made him irascible and aggressive”, continues Martucci. Neither she nor her mother knew what do and whom to contact. Thus, began to develop the first symptoms of exhaustion which led to the decision to hospitalize the father in a specialized structure, in 2012, and to constitute the Association a year later.
For many people, home care is not a choice. The admission costs to specialist structures are very high. It is a slap in the face of the welfare State. From a study conducted by Censis, family is the main and the most efficient form of home care. In more than 80 percent of cases, it is also the only one. Mostly, those who give care are the sick person’s children, usually daughters. They are called Caregivers. But, to “give care” is something more and more complex. For the members of the family, to assist means to give one’s life, to put one’s time and energy to exclusive service, often without holding anything for themselves, renouncing other affections, social relations, and even work.
Those who takes care of a person affected by Alzheimer’s disease usually fall ill themselves. According to Censis data, in almost 90 percent of the cases they develop immunodepression and chronic tiredness, about 55 percent of them suffer from insomnia and anxiety, in addition to the 43 percent who are depressed; more than a third of caregives suffer metabolic and hormonal changes, with pathological consequences on bodyweight.
In a State which cuts health services even when they are indispensable for the sick, assisting those who assist is a utopia. And it is left to the initiative of private volunteers such as Claudia. With the collaboration of professional volunteers, she created an aid center, in order to manage what is defined as the ‘‘Caregiver Burden’’, that is, the physical, psychological, relational, social, practical, and organizational “impact” on those who assists people with Alzheimer’s disease. The “intangible” cost of the tragedy. The hidden emergency of the indirect sick ignored by the national health service.
“All cases of people “burned inside” by living mourning which they need to grieve are serious”, says Mauro The Castro, one of the psychologists from the “saving network” of the association created by Claudia Martucci. On October 15, in Ostia begins a course of “Burn out”. “Inside the family is chosen a Caregiver, usually a woman. The Alzheimer’s disease has no cure. As the disease makes progress, the caregiver goes through the various stages of mourning, from acceptance to recognition”, explains the Castro. Everything starts from denial, the refusal to believe that this is really the disease everyone says it is, then denial transforms into anger, then into frustration which arises from impotence. The latter affects also the sick. Follows the conflict with the doctors, then depression. Also because “often the Caregivers suffer harassment from the other family members, they rebels against their condition of “burned alive” and are isolated”.
In the aid groups, those people find desire to live again, to love themselves, learning to understand the behavior of the sick they take care of and how to handle it. “Those who suffer from Alzheimer’s disease do not recognize physiological stimuli, such as hunger, thirst, primary needs, and this confuses them, makes them aggressive. They are afraid of water. They have no control over their emotions”.
How should the State intervene, in Lo Castro’s opinion? “First of all, by activating contexts of information and training for those who assist the sick. Then, by developing services that facilitate the life of the others; for example affiliated taxi with affordable prices, as does the Association Alzheimer’s Friends as a private initiative. Besides, the State should provide continuous professional psychological support for free”.
Alzheimer’s disease, in fact, is a social problem. “The concept of health does not belong to the individual sphere, but to the public one, since it affects the entire society,” says the psychologist. The numbers are alarming and are continue to grow. In 2015, in Italy, the new diagnosed cases are already 270 thousand. There are 46 million inhabitants of the planet who are affected by it. Every 3 seconds, a person falls ill. And only in 27 percent of the cases, the disease has genetic origins. The main cause is toxicological, due to environmental pollution, food, and stress. Prevention starts here.