"Mom felt like a little girl." How people with dementia live in Georgia
Dementia in Georgia
About 40,000 people with various forms of dementia live in Georgia, but there are no special services available to them, care and treatment falls entirely on their family members.
“It all started at a friend’s birthday party”
It was December 2000. 70-year-old couple, Tsiala and Niko, were invited to a friend’s birthday party. As usual, Niko was supposed to be the toastmaster at the feast.
Tsiala recalls that she had a bad feeling and was overcome with anxiety.
Niko had changed lately – he would get tired quickly, always wanted to sleep and would often fall asleep in front of the TV or with a book in his hands. At first, she thought that her husband was tired, but as the situation did not improve, she was already planning to take her husband to the doctor.
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Tsiala sat at the table next to her husband. Niko led the feast. As always, it was interesting – he made toasts, joked, but he didn’t drink much himself, only one or two glasses.
Suddenly, in the middle of a conversation, he turned to the hero of the day, calling him by a different name, then mixed up the names of other members of the feast, his friends, and generally forgot where he was.
Everyone was shocked. But after a few minutes, Niko’s memory returned, although that day everyone realised that he was sick.
When mathematician Niko Vakhania was diagnosed with dementia, he was exactly 70 years old and lived on for another 14 years.
Niko Vahania devoted most of his life to science. He was a member of the Georgian National Academy of Sciences, the American Mathematical Society and the International Statistical Institute. He worked everywhere and always – even in public transport.
“He was in love with math”, says Niko’s wife, Tsiala Maisuradze, 92. “When he was sitting on the tram, he counted something on the ticket, he had such a habit. He quit smoking at an early age, hardly drank even when he was a toastmaster. He walked a lot, ate right, led a healthy lifestyle”.
When they went to the doctor to get a diagnosis, Niko had to take a test: examples of addition and subtraction within a hundred. He couldn’t get through it.
“I was there, I silently rooted for him. The mathematician couldn’t count within a hundred”, says Niko’s nephew, doctor Ucha Vakhania. He later founded the Care Platform and the Home Care Coalition. He’s been working with people who can’t take care of themselves for years. Most of them are diagnosed with dementia.
Dementia – “creeping disease”
If you ever fall asleep during the day, wake up and for a second cannot understand where you are and what time of day it is – day or night, then you have a little idea what it means to feel disoriented in space and time. Now multiply this feeling several times and imagine that a person suffering from dementia is always in this state. A person with dementia is in another world.
“We don’t know what dementia is or where it comes from”, says Ucha Vakhania. “Scientists are working on various studies and assumptions, but so far we have no idea what is happening to people at this time, and we cannot manage this disease. We only see that in our beloved person the personality dies and only an empty biological vessel remains.
Dementia is often referred to as the syndrome of the elderly because it usually begins at age 65 and is one of the most common health problems in older people.
There are also earlier manifestations of dementia, although rarely.
Dementia is a disease in which the patient’s cognitive (thinking) abilities are impaired. Dementia causes a gradual deterioration of memory and mental abilities – ability to navigate in time and space, the ability to recognize familiar people and objects are reduced.
The ability to perform everyday, routine activities and make contact with others gradually decreases. Also, the patient has a confused mind, often feels angry, suspicious, and even shows aggression. Over time, as mental function declines, so does physical ability.
Dementia is one of the leading causes of disability in the elderly and is considered one of the most severe diseases for the patient himself, his family and society.
Dementia is a syndrome that combines various types of memory impairment. The most common of these is Alzheimer’s disease – more than 60% of dementia cases are due to this disease. Dementia caused by vascular disease is also common.
According to the World Health Organization, there are currently 55 million people diagnosed with dementia in the world, and the number of such people is increasing by 10 million annually. As living standards improve, so will the number of people living with dementia, which is expected to increase to 139 million by 2050.
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At the initial stage, people forget the names of others and important dates. They have a particularly difficult time processing new information. Over time, their memory deteriorates. Gradually, it becomes difficult for them to perceive the environment, they stop recognizing family members. Every day is stressful for them, because every morning they have to get used to the environment in which they live.
In Georgia, this condition is often referred to as “sclerosis”, although this term has nothing to do with a conventional medical diagnosis.
“People with dementia have the hardest time analyzing new information. They can forget the received information after 10 minutes. They may not remember what floor they live on or what year it is, although they will tell you a good story from 20 years ago. They themselves are the least aware of what is happening to them. At first, family members start having suspicions, but it is difficult for them to admit it to themselves, and they often get annoyed at the ill person”, says psychiatrist Marina Kuratashvili.
Dementia can affect anyone – the level of education and social status in this case do not matter.
No one can predict who will develop dementia and who will not, and there are no ways to prevent this syndrome. A healthy lifestyle, proper nutrition, physical activity, and abstinence from alcohol and tobacco reduce the risks, although not in all cases.
During dementia, brain cells begin to slowly die and eventually end in death – dementia is incurable.
“I call it ‘creeping occupation’ because dementia is irreversible. It goes ahead all the time and tries to take up as much space in a brain as possible. This is the plague of the 21st century, which is becoming more frequent and comes to more and more families”, says Ucha Vakhania.
“My family member has dementia”
Natia Pirashvili faced dementia when her mother was diagnosed with it.
“For eight years she had dementia, it was difficult for her to move around. For a long time, I was the only one who took care of her, so she only ate from my hand”.
According to Natia, the most difficult thing is to get used to the fact that the one you loved does not really exist anymore.
“Your loved one is changing before your eyes, their personality is gradually disappearing, and it is very difficult to admit to yourself that they will never be the same as you remember them. Mother did not remember today or yesterday at all, but she remembered herself 40 years ago. At the end, my mother was 42 years old, that’s how she felt”.
After her mother was diagnosed with dementia, Natia and her sisters founded Active Aging Georgia:
“The main thing we found out is that the public knows nothing about this problem. It also turned out that, unfortunately, we do not have professionals. We have good doctors who can diagnose it, but we don’t have a professional carer who knows how to care for a person with dementia. Finding such a nurse in Georgia is almost impossible”, says Natia Pirashvili.
According to her, a person with dementia requires several hours of daily, sometimes even continuous care and observation, which radically changes the life of the patient’s family.
According to psychiatrist Marina Kuratashvili, caring for people with dementia falls largely on the shoulders of women.
“The dementia syndrome lasts for about five to eight years, and imagine how a healthy family member suffers during this time”, says Marina Kuratashvili.
“Family members at this time become informal guardians”, confirms Ucha Vakhania. “In Georgia, this is mainly the daughter or wife of the patient. In the case of children, the years during which they have to take care of a family member statistically coincide with the period of their fertility and career growth. Therefore, it is the lost life of these people”.
Tsiala, now in her 70s, found it very difficult to take care of her husband.
“At first I did well. I was ready to do anything to make him feel better. But gradually it got harder and harder, and no one cared about me. Children and grandchildren have their own lives, so I tried not to disturb them. In the end, I could hardly stand on my feet. I couldn’t walk anymore. A little more and I would have collapsed”.
According to Uchi Wahania, in developed countries there is a public service that helps informal caregivers take a break for a while.
This service is called unloading care. A person is transferred from the family to a special institution for about three weeks, where he is given a rest.
There is no such service in Georgia.
There is no special center where a person with dementia can be placed. Finding a dementia caregiver is also very difficult, and many families do not have the financial means to even hire one.
According to experts dealing with dementia, it is not even known how many people with this diagnosis live in the country.
All we know is that according to the 2014 census, people aged 65 and over make up 14% of the country’s total population. And if we take into account that on average 8% of the world’s population over 65 have various forms of dementia, then in Georgia, more than 40,000 people suffer from this syndrome.
Experts say that in Georgia, especially in some regions, the issue of diagnosis is not properly addressed, and there is still a problem of stigmatization – family members of the patient often hide the fact that one of the family members has dementia, which is why many patients remain unregistered and without proper medical care.
According to the same census, every third person aged 65 and over lives alone, and for 84% of these people, the only income is a pension, which is 260 lari [about $84].
Natia Pirashvili says that with dementia, this amount is not enough even for medicines:
“Akatinol, which she was prescribed, cost 13 lari for ten tablets in 2018, 17 lari in 2020, today it costs more than 25 lari [about $8]”.
Public health programs do not address the specific needs of people with Alzheimer’s disease, and they are usually cared for only by family members.
According to Pirashvili, this disease needs long-term medical and social care, which is not affordable only for family members, so an institution is needed to take care of such people:
“In such institutions, for example, the way to the toilet should be marked with red lines so that it is easy to find. The toilet should also indicate where you are to sit. These people need to be cared for by specialists who will help them overcome their daily obstacles”.
According to Pirashvili, her organization tried to create the necessary services, but did not receive support from the state:
“We faced many obstacles in the Ministry of Health and we were denied answers to many questions. Not only did we want to implement support services, but we also worked on issues of violence because no one talks about it. The ministry told us that there is no domestic violence against older people in Georgia”.
Ucha Vakhania says that dementia is an invisible problem in Georgia, which shows the attitude towards older people in general:
“There is no program in this direction, neither state nor municipal. We treat dementia like it does not exist here. We are completely blind to this problem”, says Ucha Vakhania.
According to Marina Kuratashvili, the diagnosis and prescription of several drugs is the maximum that the state does for people with this disease:
“We make a diagnosis and then we prescribe drugs to the patient. True, dementia is included in the “vertical program” of the Ministry of Health, which means that the medicine is free. But this medicine must be purchased by an outpatient clinic. It often happens that they don’t buy it, and then the patient is given the medicine that is available in the clinic”, says Kuratashvili.
Experts agree that the biggest problem for family members of people with Alzheimer’s and other forms of dementia today is the lack of professional caregivers.
“It is important to train the caregivers who will come to patients’ home and provide them with psychosocial services”, says Natia Pirashvili.
“Time has stopped, but life goes on”
Although there is currently no cure for Alzheimer’s disease, care and attention can improve the patient’s quality of life and prevent other complications.
“Most importantly, we must do everything possible so that people with dementia spend the rest of their lives surrounded by love and in comfortable conditions”, says Ucha Vakhania. “These people have their own desires and interests, which can often be completely incomprehensible to us, but we need to be sensitive and show compassion so that they maintain their dignity and safety to the end”.
It is important to remember that although personality change has occurred, the personality itself has remained the same. Now your loved one is in a situation where time has stopped, and life goes on – he himself is afraid and needs support.
“These people may not remember us, but they feel our emotions. We must look them in the face when we talk to them. Touch and hug because physical touch is important to them. We can turn on their favorite music, look at old photo albums with them and ask them to tell us old stories so that they feel that someone is talking to them”, says Marina Kuratashvili.