Dementia in Kazakhstan and why people tend to ignore it
Men and women overboard: Dementia in Kazakhstan and why people tend to ignore it
27.05.2024
Article published on the Zakon.kz website
“Sometimes old age comes without wisdom”, young people sneer, mocking the fractious disposition of the older generation. But is this really just about a person being bad-tempered? How can loved-ones be helped whose “enemy” is inside their heads? Zakon.kz looks into the difficult life challenges faced by people with dementia.
“What do you expect? There’s no cure for old age”
Alzheimer’s disease is the most common cause of dementia (60% to 80% of cases). In total, there are around 100 different conditions that can lead to this affliction.
“Officially, 10,000 Kazakhs have been registered as dementia sufferers but the figure is really 20 times higher. We have quite a lot of people of pensionable age in our country which, according to my calculations, means that the number should be around 200,000. They just don’t pay much attention to these people and their families”, says Zhibek Zholdasova, a psychotherapist and candidate of medical sciences.
There are many reasons for this, ranging from general ignorance to both the public and doctors attributing what is happening to the vagaries of old age.
“We all have different “default settings” with a variety of individual factors in play. Someone who is a hundred years old can still be of sound mind whereas others….. Alzheimer’s or dementia usually starts in people over 65 which is considered a late onset of the disease. Dementia that occurs before the age of 65 is seen as an early manifestation of the condition or that of Alzheimer’s disease. Such people comprise about 10% of all dementia cases. However, I know of a family in which Alzheimer’s started at around 40 years of age with people passing away by the time they were 50. It’s a hereditary disease – these things can happen”.
“Literature on the subject describes how even 30-year olds can have a poor genetic background and be carriers of a malignant gene that causes early Alzheimer’s disease or dementia. Dementia also affects young people, for example as a result of a serious brain injury. However, 90% of cases are people over the age of 65”, said Zhibek.
On the road to self-destruction
Dementia risk factors can be divided into the irreversible (genetics, age, sex) and the reversible. Among the latter are:
- Diabetes mellitus
- Arterial hypertension
- Poor education
- Sedentary lifestyle
- Hearing loss
- Brain injury
- Air pollution
- Alcohol abuse
- Smoking
- Depression
- Loneliness
- Obesity
“Controlling these factors enables you to reduce the risk of developing the disease by 40%. Taking regular medication to treat hypertension and diabetes will help keep these conditions in check. We have a lot of cases where people leave everything to chance which significantly increases the dementia risk. People should lead an active lifestyle, alternate between mental and physical activity (Author’s note: a variety of exercises will enable you to engage all parts of the brain), have a healthy nutritional diet and avoid bad habits”, said Zhibek.
However, according to Zhibek, the majority of her fellow citizens, even those with life-threatening illnesses, prefer to “go with the flow”, seemingly trusting their fate to luck.
Silent killer
Not many people know that Alzheimer’s disease has an asymptomatic stage. It can continue for 10-15 years in a biochemical phase as if “preparing the ground” for the oncoming devastation. With the victim blissfully unaware of the danger, the “predator” acts covertly, accumulating harmful substances such as beta-amyloid and tau protein in the brain. The calm before the storm lasts until a critical mass is achieved. The insidious substances then attack the nerve cells which subsequently die in the unequal struggle.
“You really piss me off”
Quite early on, even at the pre-dementia stage, corrosive character changes, mood swings and emotions come into play in the brain. Once very affable when in conversation, a calm person can gradually become more capricious, resentful or irritable. A barely noticeable slight edginess in the middle stage of the disease can eventually turn into open hostility. The more complex the situation, the more likely the sufferer is to use bad language, which can potentially lead to physical aggression.
So, the aforementioned phrase “old age comes without wisdom” should not be a reason to snigger but as a reminder to keep a watchful eye on the cognitive functions of an elderly relative as the process of personality disintegration can still be slowed down.
“But 50 years ago…”
The hippocampus is the part of the brain responsible for short-term memory and is the function that begins to deteriorate the earliest. The process of losing baggage accumulated along the way follows the so-called Ribot’s law – newly acquired items fall out of a “suitcase” but only the treasured ones. In other words, the sufferer will easily describe “in vivid colours” how he/she “went potato harvesting in the USSR” but won’t be able to repeat the phrase they have just heard.
“Memory impairment will gradually increase and manifest itself in a person’s endless repetition of the same questions and situations, as well as he or she having difficulty in selecting or pronouncing words. This can happen to us all, particularly when we are stressed, after a sleepless night or a serious illness but we always get over it. But with Alzheimer’s and other forms of dementia, memory and wordfinding problems will only get worse”, said Zhibek.
“You want to kill me”
In the middle phase of the disease, a damaged computer as well as losing its files will start to produce system errors in the form of hallucinations and/or delusions. More often, these states of mind affect people during the evening and at night.
“Delirium is when an elderly person begins to accuse others of stealing their possessions, of trying to poison them or evict them from their apartment. Elderly men often have delusions of jealousy, particularly of their spouse. They cannot describe their “love rival” but are absolutely convinced of their partner’s infidelity”.
“Of course I believe you”
At the same time, whatever idea a person with dementia comes up with, it is useless to try and argue with them or attempt to change their mind as this could lead to open hostility. You should therefore speak in short simple sentences as if you were talking to a three-year old child.
A danger to the sufferers themselves as well as others
In 40% of Alzheimer sufferers, the disease will begin with symptoms of depression which can sometimes result in a person taking their own life.
“All the statistics are essentially the same and show that 10%-15% of depressed people are prone to suicidal behaviour. In addition, when the disease is in the medium or severe stage and where the sufferer has experienced hallucinations and thinks they hear voices telling them to do something, he or she can pose a danger both to themselves and others. If we start treatment during the mild stage of dementia, the results will be much more positive than in the later medium or serious phases”, said Zhibek.
Important
Treatment of the mild stage of dementia enables the sufferer to remain independent for five years. Mental deterioration in the form of hallucinations and delusions is practically non-existent and the risk reduced to a minimum.
Practical difficulties faced by sufferers and their families
Dementia sufferers and their relatives are often left on their own to deal with their situation. There are two essential drugs for treating the disease that appear on the national list of free medications, namely donepezil and memantine. However, in Zhibek’s experience, polyclinics are either unaware of this or very unwilling to issue these drugs. Of course, if you are persistent there is a better chance of getting the medication. However, this where help from the State ends.
“A family member will often have to quit their job to care for a loved-one, with consequent loss of employment history and source of income, making them financially dependent on their relatives. Even disability status is denied to them. They are often misled, being told that pensioners cannot apply for disability status. Or they are told that a pensioner will lose their work pension and only receive a small benefit payment if they manage to have a disability registration. This is all untrue, misinformation and ageist which I think is a crime. We have no right to refuse a family and dementia sufferers disability status. This will often involve the 1-2 disability group who are in the middle stage of the disease, i.e. where a sufferer can no longer live alone and needs constant care and supervision. This means that someone has to stay close by”.
“People who have to look after a dementia sufferer should therefore have the status of an individual helper and be granted a carer’s allowance. This is rejected by the official authorities and is an unspoken rule which isn’t recorded anywhere. I get angry about this every time but can’t prove anything”, said Zhibek.
Zhibek has been working on dementia issues for the past 14 years. In 2020, she was successful in ensuring that dementia sufferers received free medication but, as we have seen, it is still necessary to fight to obtain the drugs.
Finally, it is really unsettling to see old men and women who once built the ship that is our country who were teachers, nurses, storytellers and helped the next generation to “take the wheel” now “being thrown overboard” by the current generation at a time when they need a strong helping hand the most.
