"You have to go through the seven circles of hell": why many patients with dementia refuse to apply for a disability

In September, a petition appeared on the Internet demanding to stop treating dementia in older people as a psychiatric disorder.

The author of the initiative, founder of the Strelitzia charity fund to help people with dementia and their families, Angelica Alekseeva explains what prompted her to come up with such an idea.

In 2017, her mother was diagnosed with dementia. 

“The neurologist picked up the therapy and said that this is a disease that qualifies for the first group of disabilities.

But for this, the diagnosis must be confirmed through a psychiatrist, "says Alekseeva RT.

The local psychiatrist, continues Angelica, told her that in order to confirm the diagnosis, her mother needs to register with a psychiatric dispensary (PND).

But in a small town in the Vladimir region, where her mother lived, there was no PND.

“They said that it was necessary to register at a psychiatric dispensary in Vladimir, and I had to hospitalize my mother there for 21 days!” Alekseeva explains.

"Do you know how stressful it is for a woman with memory impairment?"

Alekseev's mother refused to hospitalize.

To this, she said, a local psychiatrist said that she "will not see any confirmation of the diagnosis, no disability, no free drugs, no diapers, no help."

In 2021, Angelica's mother suffered a stroke and became bedridden.

Alekseeva's expenses for her maintenance rose sharply: the woman had to be sent to a boarding house, to buy diapers and medicines.

Angelica again tried to get a disability for her mother, now for a stroke.

“But to be sent to the ITU after it must pass at least six months.

Unfortunately, my mother did not live up to this moment, ”she says.

Despite the deterioration of his condition, it was also not possible to obtain disability due to dementia.

“They offered to transfer her from the boarding house to the mental hospital, confirm the diagnosis, and return her back to the boarding house.

Naturally, I did not agree to this, this is a mockery of the bedridden patient, ”says Alekseeva.

As a result, for the entire time of her mother's illness, the family did not receive any help from the state.

"Optional condition"

Alekseeva's initiative caused a mixed reaction.

In the community of relatives and caring for dementy people, she was criticized, doctors also reacted to her with bewilderment.

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• © Angelica Alekseeva

It's all about the wording.

As Alekseeva herself explained to RT, she does not call to stop considering dementia as a disease as such.

“I am in favor of moving her into the category of cognitive disorders, not psychiatric ones.

So that a neurologist can do it.

Because now she is tied to a psychiatrist in all respects, without him neither the diagnosis is confirmed, nor the disability is given.

And they are forced to be hospitalized, ”she says.

Aleksandra Shchetkina, President of the Alzrus Foundation for Helping People with Dementia and Their Families, says that the problem of being forced to be hospitalized in psychiatric institutions to confirm the diagnosis and obtain disability in dementia does exist. 

“Often doctors offer to first be hospitalized, and then consider the possibility of issuing a referral for examination,” the expert explains.

At the same time, Shchetkina emphasizes, the law does not contain such a requirement. “I would speak here about the violation of patients' rights, because this is not legally enshrined as a prerequisite for getting a disability. This (hospitalization

) is more at the discretion of the doctor, "she continues.

According to paragraph 23 of the government decree "On the procedure and conditions for recognizing a person as disabled," a medical and social examination "can be carried out at home if a citizen cannot appear at the bureau for health reasons, or at the place of residence of a citizen in a medical organization in stationary conditions, in the organization of social services, providing social services in a stationary form, or in absentia by the decision of the relevant bureau. "

In other words, a medical examination can be carried out both in a hospital setting, and on an outpatient basis, or even in absentia.

The same information RT was confirmed by the Ministry of Health of Russia.

“The diagnosis of cognitive impairment in older patients can be made both on an outpatient basis and in an inpatient setting.

This usually depends on the severity and severity of the existing cognitive impairment.

At the same time, it should be noted that indications for hospitalization of a patient may be: the need to perform an inpatient examination in order to clarify the diagnosis, an acute increase in the severity of cognitive disorders, delirium, as well as the impossibility of stopping somatic or neuropsychic disorders on an outpatient basis, socially dangerous behavior " , - reported in the department.

"It's inhuman"

Nevertheless, situations such as with the mother of Angelica Alekseeva occur regularly throughout the country, judging by the numerous complaints from citizens in online communities dedicated to dementia and appeals to charitable foundations. 

“Today I handed over documents to the commission again, the documents were returned, they said that I had to lie down in the hospital.

I say, as in a hospital, we have Alzheimer's (one of the most common types of dementia. - RT)?

The doctor says that you will lie down with this diagnosis.

Tell me, is this normal? ”Asks a relative of a patient with dementia in one of the support groups for families of patients.

“And we have to be put in the hospital three times so that the group can be given.

They look at their behavior, they may not give it yet, ”writes another member of the group.

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• © Alexey Sukhorukov

“My father also has dementia.

We were told at the PND that in order to receive a disability due to a psychiatric diagnosis, a hospital is compulsory, ”another participant shares her experience.

Relatives of people with dementia are not without reason afraid of hospitalizing their loved ones in psychiatric clinics.

The consequences of such compulsion to hospitalization can be very difficult for patients and their families, says Alexandra Shchetkina.

“Hospitalization can significantly worsen the patient's condition.

Because it is difficult for a person with dementia to get used to new things.

Left alone in the hospital, where he does not know anyone, the person does not understand what is being done to him, why some tests are required, why he is being taken somewhere, it is difficult for him to adapt.

It's inhuman, ”she explains.

“Or, for example, an elderly person is hospitalized, who went to the hospital on his own, ate himself, maybe poorly, but still could serve himself.

And they returned him in a supine state, with a large bedsore, "Shchetkina cites as an example.

"Incredible" love "for hospitals"

The opinions of psychiatrists about the risks of hospitalizing dementia patients were divided.

So, the candidate of medical sciences, psychiatrist Diana Genvarskaya believes that such a requirement is "absolutely logical."

“Hospitalization makes it possible to examine a person as efficiently as possible.

In such patients, it is better to very well examine all their functions: this is thinking, and logic, will, emotions.

Which is practically very difficult to do at the reception.

That is, to track the depth of the lesion, to carefully look at the vessels - it is in the hospital that everything is possible, but in the outpatient clinic it is impossible.

In the same way, the psychological and personal characteristics of the patient are examined.

Plus, he is fully examined somatically: cardiology, blood vessels, cholesterol and sugar, endocrinology, urology, if necessary.

All this is possible only when stationary, ”says Genvarskaya.

According to her, an examination for 2-3 weeks in a psychiatric clinic helps to find the right drugs. 

“Looking at a person’s reaction, one can select psychiatric drugs with jewelry.

And subsequently he can use the selected treatment for a long time, which is also impossible if the person comes, ”she explains.

Psychiatrist Viktor Lebedev adheres to another point of view.

“Of course, you don’t need to (send for hospitalization. - RT).

The law itself does not write about it.

There is a certain amount of examinations required for referral to the ITU, which can be done safely at the outpatient stage, without hospitalization.

We have an incredible "love" for hospitals in Russia.

It is believed that if a person is in the hospital, they are 100% well examined and diagnosed there.

But this is not entirely true, sometimes hospitalization is more likely to even harm the diagnosis, "Lebedev tells RT.

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• © Ilya Pitalev

According to him, it can be very difficult to assess the moments associated with the patient's everyday adaptation when he is in the hospital. 

As for therapy, Lebedev doubts that the hospital always picks it up correctly.

“Hospitalization can lead to a worsening of the patient's condition, because at home he can be in his own order, and placement in a foreign environment is fraught with the emergence of states of confusion, for which the doctor in the hospital prescribes medications that are not clear how they will affect him,” explains the psychiatrist.

“There is a tendency in hospitals to prescribe drugs, including antipsychotics, without much analysis.

And for an elderly person, it may not end very well.

There may be urinary retention, problems with attention, memory, if the antipsychotic is chosen incorrectly, ”Lebedev continues.

Vyacheslav Filashikhin, candidate of medical sciences, chief physician of the Rosa Center for Psychiatry, Neurology and Narcology, also believes that hospitalization of demential patients carries risks.

“And we, psychiatrists and neurologists, know the fact that if a person lives in the same place for many years, even with dementia, he can maintain normal functions for a long time, take care of himself, go to the toilet, clean the house, and so on. ...

And if he changes his location, he begins to get confused there, to deteriorate.

This is true.

When hospitalized, simply because the usual conditions have changed: in a different place a toilet, in a different place spoons, forks - a person starts to crumble from this.

Therefore, every time a dementia patient is hospitalized, it is necessary to weigh everything 10 times, ”explains the RT expert.

"An important help for the sick"

In addition to the requirement for hospitalization, which is not prescribed by law, relatives of people with dementia face other obstacles on the way to establishing a disability.

“For example, according to the law, a referral to the ITU can be given not only by a doctor, but also by social protection, and the pension department, if you have medical documents.

There were cases when we advised our carers to do this, they came to the local social welfare office, and everyone shrugged their shoulders and said, "We don't know this, we don't give it out."

Although it is spelled out in the law, ”says Alexandra Shchetkina.

Also, according to the expert, there are cases when the family refuses hospitalization and the doctor does not give a referral to the ITU.

"It does not give a certificate of refusal - this is a special paper with which, according to the law, you can apply to the ITU yourself, if you have all the necessary examinations and medical documents," Shchetkina continues.

It is about paragraph 19 of the same government decree "On the procedure and conditions for recognizing a person as a disabled person."

According to him, “if a medical organization, a body that provides pensions, or a body for social protection of the population refused to send a citizen to a medical and social examination, he is issued a certificate on the basis of which the citizen (his legal or authorized representative) has the right to apply in the bureau yourself. "

Some dementia families are faced with the requirement to first incapacitate the patient.

“But there is no such clear condition for establishing disability in the law either.

It may be needed only if the patient himself, due to illness, can no longer sign, express his desire for disability registration.

If a relative does not have a power of attorney to represent interests, then disability registration becomes a very long process, ”explains Aleksandra Shchetkina.

This happened in the family of Lyudmila Toroptsova from the Rostov region.

Although Lyudmila had a power of attorney to represent the interests of her mother with dementia, local doctors still refused to send her mother to the ITU, referring to the fact that she was not incapacitated, the woman said.

“Psychiatrists yelled at me that since my mother was not incapacitated, then she was not entitled to disability,” recalls Lyudmila.

“I explained to them that I didn’t want to deprive her of her legal capacity, I wanted to preserve her independence as much as possible, and that in general, this is my own business, why I don’t want to, and her capacity is not relevant at all”. 

The woman, in her words, had to literally “torment” the local psychiatrists and their superiors with constant visits and calls before her mother was given the required disability.

As a result of such difficulties, says Alexandra Shchetkina, some families stop fighting for diagnosis and disability. 

“Disability is not only a pension, but also an opportunity to receive benefits, medicines, technical rehabilitation means - wheelchairs, walkers.

It is a help to families who care for their loved ones.

But to get it, you have to go through the seven circles of hell, ”she says.