What does a neurologist do when he hears his dementia patient ask him to help her die when the disease progresses because she is alone? What does a daughter or son do who is in financial difficulty and has to support a father or mother who no longer recognizes him?

It’s not Rita Hayworth who couldn’t remember her words at the last shoot and everyone thought it was because of the alcohol. Not even Robin Williams, who ended up killing himself. And certainly not Thatcher, who, in her old age, confused the war in the Falklands with the war in Yugoslavia. They are not so alien and distant. These are our parents, neighbors, the old man they are looking for with Amber Alert, the lady who walks alone and talks.

In our country there is no register of the unemployed. According to expert estimates, there are about 200 thousand of them. And since they are not registered anywhere, the state does not know them and does not reach them.

From time to time there are educational and information campaigns, enthusiastic press releases and posts every time a new drug is released, but only those who live near a person who has lost his mind know how difficult it can be in a maze and irrational social position, in which they already have a difficult life.

“My mom was diagnosed about 7 years ago. Today he is 87 years old. He receives a pension of 700 euros. Her expenses amount to approximately 1,600 euros per month, excluding emergencies that may arise at any time.”

Anna is a teacher, divorced, mother of two minor children and shares maternal care with an unregistered Georgian. She speaks non-stop when you ask her to describe her experience with her mother, and you don’t have to ask her questions.

“If these people need to be hospitalized for another reason, as my mother did after a heart attack, it’s hell because there are no trained nurses who know how to deal with people with dementia. I had never heard of a disability sheet before. None of the neurologists who saw Mom told me it was possible. They may not know it either. There are also no special benefits for housework or physical therapy, which can be extremely helpful if the body responds. Difficulties arise in everything, even in passing exams. Even for transportation, for examination by a neurologist. And the legal process for obtaining adult custody is expensive and time-consuming.

In general, the most common practice, if you do not have extra money, is to put these people in EOPYY clinics. I went and left in tears from one in Kipseli, in a state of shock. They were constantly in bed, in a catatonic state, and the only service was washing and feeding.

Caring for them at home after a while becomes almost impossible, as they need round-the-clock supervision. And no, there is no concern for educators, at least I did not hear anything, although I searched a lot. Obviously, I need psychological support, someone who will listen to me, but my finances do not allow me to pay for psychotherapy.

If you talk to the relevant officials, you will hear that the National Disability Portal and the Disability Card were established in the summer, because before that we did not even know how many disabled people live in our country. The ministry concerned (Labor and Social Protection) is talking about a massive reform that will allow people with a proven disability to know what they are entitled to with one click. As for the mentally ill patients, when that time comes, their legal assistants, who are usually their children, will take care of them.

“Today my mother’s hand was swollen. I called the doctor who told me it could be a blood clot and he needed an upper limb triplex. My mom doesn’t move, so I would take her downtown. It will only cost 5 euros as far as participation is concerned. I searched and finally found a portable device that makes triplex so that the doctor can come home and do the test. I paid 200 euros.”

Margarita, when she realized that her mother was going crazy, turned to the website of the Athens Alzheimer’s Society to understand where this dark journey was leading. What she could never have predicted is that she would have to work two jobs to provide dignity for her mother, who is 80% disabled.

“I applied to EFKA for an allowance, which was told to me by a lawyer friend who works in the ministry. It happened now in October. And yet I wait, no voice, no hearing. Meanwhile, the disability is already large, since he suffered a stroke and now cannot walk.

Margarita also does not stop: “According to rough estimates, over the past 4.5 years I have paid 70,000 euros. He receives a pension of 550 euros. Monthly expenses are about 1700 euros: girl’s salary 1000 because it’s six days, supermarket 350, participation in medicines 50, frequent doctors and tests for various things, household expenses (bills, utilities, etc.) 150-250″ .

“My mom was diagnosed about 7 years ago. Today he is 87 years old. He receives a pension of 700 euros. Her expenses are approximately 1,600 euros per month.”

The only study published to date on the economic burden of dementia in Alzheimer’s disease is a study conducted by health economics professor Yannis Kyriopoulos in 2005. dependence stage at home €957 and dependence stage in an institution €1267. Many years have passed since then, and the cost of living has risen.

Alzheimer’s Disease International estimates that 44 million people worldwide are currently living with dementia, with Alzheimer’s disease being the predominant form. This number will double by 2030 and more than triple by 2050.

Age is the first factor associated with the degeneration of brain neurons. 2% of the population aged 65-74 have dementia, increasing to 19% among those aged 75-84 and 42% among those over 85.

For educators, this test is sometimes unbearable. At best, they have to deal with symptoms such as aggression, depression, apathy, increased motor activity, psychoses (delusions and hallucinations), disinhibition. At worst, they are unable to pay for home care and are unable to slip through the cracks of unscrupulous bureaucracy.

Social security funds cover part of the costs of specific services related to the treatment, movement and mental rehabilitation of people with dementia (physiotherapy and speech therapy) and for a limited time. There are different benefits, from a conditional social checkpoint tariff to tax benefits, but you need to do a good search to find out.

This is part of the pathogenesis that characterizes the health care system as a whole: fragmentation of services, lack of continuity, inpatient-oriented approach, non-personalized, imaginary participation of patients and their families in shaping decisions affecting them, clientelism and the prevalence of the “familiar acquaintance”.

Professor of neurology Nikos Skarmeas from EKPA, who has many international publications on dementia, notes: “The need for day centers, as well as other structures related to dementia, such as clinics for memory and mental disorders, is extremely great. Structures such as day centers exist in very few municipalities. At the same time, as our experience with Eginit shows, the waiting time for an examination in memory clinics is many months. It is very difficult for a patient to get the necessary help if he does not live near such buildings and if he does not have financial and social opportunities. A plan for establishing such structures is included in the National Dementia Plan. However, unfortunately, there is a large disproportion between the needs described in the national plan, on the one hand, and the pace of implementation of such structures, on the other.

“The state should, in my opinion, start the implementation of the National Plan for Dementia, not with special movements and interventions that actually take place, but in a technocratically and administratively organized, structured and systematic way, including the modernization of its work. of the National Observatory of Dementia, as well as assigning “ownership-responsibility” for the individual axes and actions of the National Plan to specific groups of competent administration officials, the creation and implementation by these groups of specific schedules and results, etc. “EKPA Professor of Neurology Sotiris Yiannopoulos found in ” Attikon” is a way to facilitate procedures for patients, which sometimes in themselves are a great burden for their illness.

“Neurological patients are mostly chronic, followed by dysthymia or non-compliance and anger towards the healthcare system. My personal approach is patient centered. I also use the skills of a new generation of doctors in working with any electronic platform available to the patient. Thus, time is saved, and at the same time, the solution to any health problem becomes friendlier, more efficient, and the dissatisfaction of these patients is significantly reduced.”

Themis Dardiotis is if. Professor of Neurology at the University of Thessaly and Head of the Alzheimer’s Day Care Center in Larisa (EPAPSY). They have about a thousand beneficiaries, most of them over 65 years old. At the initial stage, they are interested in timely and reliable diagnostics, then cognitive and speech therapy rehabilitation, leisure, gymnastics and other group activities.

Anna and Margarita didn’t even know that day care centers existed, and certainly didn’t exist in their area. They met on the occasion of this discussion and exchanged phone numbers and emails to pass on information to each other, what they hear and what they learn, even to freely express their opinions as they agree with each other.

The emotion they feel strongly, as they say, is loneliness. As if they are on the verge of normality, as if they were not invited to other people’s holidays, as if they were imprisoned in a microcosm without meaning, literally and figuratively.

We’ve seen Father with Anthony Hopkins, Still Alice with Julianne Moore, but no film can capture the agony of a man who loses himself with age, or the mental exhaustion of his loved ones who can’t stand them. close to him, but also the guilt of failure.

Maybe Love Haneke is closer. Eventually, Georges suffocates Anna with a pillow in an aristocratic apartment in Paris.

Numbers

200 000 suffer in Greece, according to experts.

44 millions of people live with dementia worldwide. This number will double by 2030 and more than triple by 2050.