GLORI is re-publishing this article in full with the knowledge that some of the language used by the authors of the Russian original to describe the elderly patients, does not align with the GLORI core values. GLORI promotes a humanistic approach with a focus on human dignity, social justice, and respect of all persons. These shared values are integrated throughout all projects including those focused on elderly and their care givers. GLORI will continue to promote the understanding that Alzheimer’s and other dementia related conditions are a disease which can negatively impact behavior and communication. GLORI recognizes the multi-level challenges and stress experienced by caregivers of elderly with dementia and we are committed to assist.
The epidemy of dementia impacts the world. According to the WHO data, more than 47 million people suffer from it, globally, and this number increases by 10 million every year. By 2050 this number is expected to tri-fold. There is no reliable statistics of patients with dementia n Russia. According to the various informal sources, the number varies from 1.3 through 1.8 million, but experts consider these numbers too underestimated. At the initial stage dementia in Russia is not diagnosed, and the patients’ behavioral deviations are traditionally explained by personalities’ specifics. Relatives start acting and involve doctors at later stages, when let say an elderly granny starts appearing as a monster who does not observe any ethical norms. This article by lenta.ru is describing the status and exploring the issue.
Brains Are Suffering
“I do feel like it’s not appropriate to think the way I do, however, I have to openly say that I started hating my mom. It started about 3 years ago, when my mom turned 70. She lived in a separate apartment not far from our neighborhood. Once her neighbor called me and said that my mom has been standing and crying near the open window for almost 2 days – she was also shouting something like “People, please help, they closed me here, I need food and water – if nobody helps me, I’ll just jump out from the window” (Olga Vetrova, 40 year-old, Irkutsk, Russia).
Olga was surprised because before never heard of anything like that about her mom – but remembered that since recently she started repeating some phrases for several times, which was considered by her relatives just as a “cute feature that positively distinguishes aged people”. After the incidence with the shouting and threats of jumping out of the window they visited a doctor at a policlinic who did not find and didn’t diagnose anything bad – but suggested that it would make sense to do magnetic resonance imaging of the brains. This is how her mom was first diagnosed with the beginning stage of Alzheimer’s Disease, and Olga took her from her apartment so that they lived together. Since then Olga, her husband and their 8 year-old son live in the living room, and Olga’s mom in the bedroom.
“Sometimes it’s very hard, and I do feel like my own brain is starting literally to destroy because of those hardships. The sickness is progressing. Mom is always unhappy with everything, she became very aggressive and is not involved in housekeeping at all. She easily can turn on the oven and start heating food in plastic plates. Recently she cut into pieces all the linen that were stored in the wardrobe. She also threw the whole bunch of newspapers into the WC which became blocked. If she need to pee, she is using jars which she later empties either on the floor in the bedroom or splashes it out from the window. We have to use lots of bleach to somehow minimize the scent.”
According to Olga, the psychiatrist whom they invited, refers to “age-caused changes” and encourages them to tolerate what is happening. Their requests to prescribe certain medications, like neuroleptics for overall stabilizing mom’s status and minimizing hallucinations, the psychiatrist sees as something immoral – according to him, “in the future you’ll find yourself in a similar situation like your mom now, so please be more ethical, don’t torture your mom, tolerate the hardships and be prepared to survive them through their end.”
Disorder as a Norm?
Dementia is a condition in which there is deterioration in memory, thinking, behavior and the ability to perform everyday activities. A person with dementia step by step is losing all the skills they had before. Elderly people are more at risk of getting dementia than the young ones. It’s found in no less than 5 to 10% of people over 65 and almost in every third among people over 85. There are several kinds of dementia, more than half of them fall under the Alzheimer group. The average life expectancy of people diagnosed with dementia, is from 10 to 15 years.
According to Mariya Gantman who runs the Russia-based NGO “Help to patients with Alzheimer and their relatives” and is also a researcher with the Mental Health Center of the Russian Academy of Medical Sciences, in the West dementia is considered an epidemy, but in Russia it’s seriousness is underestimated by both relatives and doctors. Many psychiatrists and neurologists erroneously think that “elderly marasmus” is not necessarily a subject to medical treatment because it’s a “developmental norm” and the issue is always solved “naturally” [when patients die]. It’s true that so far there is no medication for dementia. However, the patients’ behavior can and should be corrected so that they don’t reach the extreme forms of aggressiveness. Also, it is quite possible to slow down the dementia development is the early symptoms were identified and properly cured with special interventions. The problem is that most relatives apply for doctors’ help when it’s too late.
According to Mariya Gantman, the recent series of TV “social advertisement” is a success story: in the short clips there is announcement that if your granny forgets to water flowers, it’s quite a reason to apply for doctor as soon as possible. She mentions that there were many cases when relatives were very surprised when heard of their elderly’s diagnosis and confirmed that all the identified deviations had been lasting for many years but they thought they were caused by their granny’s capriciousness.
Mariya Gantman is sure that it is possible to train anyone in applying the simplest screening for mental status, including relatives, medical professionals, nurses and social workers: if a person is asked to paint a clock that would display certain time, the healthy one does it with no problem but the one with mental problems writes numbers like “13”, “14” etc. on the clock face.
When the Close One Is Turning into a Beast
Dementia is destroying not only the patient but also their relatives and caregivers. It takes sometime quite long to relatives to understand that their parent or an elderly relative is turning into a beast. Or an infant who stops recognizing anyone and doesn’t remember anything.
“For 10 years I have been taking care of my mom who is 80 now. She is living with us in the 2-room apartment. I have a son and a daughter who are 17 and 15 years old. My husband decided to divorce as was not able to tolerate the situation any longer. Apparently, my mom, when she saw him, got very angry and started shouting at him and blaming in stealing her money and property (like savings from the bank account that never existed in reality, or an old sewing machine that was thrown by mom herself). While shouting, she strangely enough uses quite dirty words that I would never assume she is aware of. So, at some point my husband decided that it’s too much, and left – it’s very hard. For many years we were not able to leave for a vacation as could not delegate the care to anyone else. (Oksana, Moscow, Russia).
According to Oksana, her many relatives suddenly disappeared and just rarely call her asking “how is everything”. Since recently her mom shouts very loudly every night, and medication does not work. Neighbors are unhappy and start thumping the radiators every time she shouts, and it looks like they don’t quite believe that it is sickness – they suspect some other reason. Because of lack of money she has to involve the son and the daughter in the care-giving, but they complain that she “steals their childhood”.
“I very much suffered from the lack of professional information. Our doctor just mentioned “senile dementia” and didn’t explain what it was, what to do and what to expect. We were crying and just thought that the dad would die soon, but no way, patient with dementia is not a regular patient. It’s absolutely traumatic to see how your parent is step by step turning into a beast, a monster. Our dad ruined furniture, spread his excrements over the walls, and washed his hands in the WC. Don’t trust when someone tells you that patients with dementia are like infants – no way, the infants cause joy, bring hope and learn something new – but with elderly it is just totally vice versa, the other way around”. (Svetlana Ignatieva, Ekaterinburg, Russia).
Patients with dementia forget their relatives, all ethical norms get ruined, and they become sexually concerned.
“Our granny strips and asks to paint her anus with iodine. When we refuse, she starts crying and complaining. When I turn her with my back, she tries to touch my private parts. She follows the grand-grand children and can easily strip when they are around. But it is impossible to limit their access to her. She tells different dirty stories”. (Anne, Moscow, Russia).
The suffering families receive almost no help from the government. If the relatives hire a professional sitter, it costs from 30 to 50K Roubles per month in a big city ($530-$880) which is unaffordable to many who would need such service. If people don’t have enough money, they delegate the sitter’s / caregiver’s role to someone of their relatives.
“Patients with dementia cannot stay alone for a long time, which means that the caregiver needs to drop their job. The Pension Fund can compensate 1200 Roubles ($20). We also were able to get monthly allowance to our dad as to a person with disabilities, and therefore qualify for 2 diapers per day. Unfortunately, the brand that is covered by the allowance, is often not available in the drug stores, so we have to buy the ones that are available at our own money – but in this case the Pension Fund returns us just 40% of the expenses”. (Irina Semina, St Petersburg, Russia).
The dementia-specific groups and forums in the social networks is now only supportive resource for the care givers. As of today, it’s almost the only source of relevant information and sharing experience.
According to Irina Semina, if she found a proper group in the social network before their dad’s dementia reached the current stage, she would then avoid many unnecessary mistakes. As she is advising, if your relative is diagnosed with dementia, you should officially register them with a psychiatrist with no hesitation or fear. It is important to remember that patients with dementia, in its early stage, become victims of various rogues and swindlers who either try to sell some kind of a “very effective” medicine or service at huge money, or buy something that they own. It does not make much sense to try to convince a patient with dementia in something trying to build communication on a logic. If their health status improves, it’s temporarily, and these periods are shorter with time.
Sleep, Foreign Language, and Music
Lenta.ru was able to summarize certain dementia-specific presentations from the recent conference “Society for All Ages”.
Eugene Rogaev, Head of Laboratory of Evolutional Genomics at the Institute of General Genomics named by Vavilov under the Russian Academy of Sciences, Professor at the Department of Bioengineering and Bioimformatics at Moscow State University:
I don’t work with patients with dementia directly, but I do study Alzheimer’s using animals and genetic methodologies. I am sure that as of today, the dementia prevalence in human society reached the level when it’s possible to refer to it as to the epidemics. The G8 in 2012 discussed this issue and there was a commitment to find some kind of proper medicine from dementia by 2025. All medicine that is available now, serve just as a supportive mean. As of today, there is no efficient treatment.
There are several reasons for that, and one is that most volunteers whom we are able to recruit for clinical trials, are the ones with advanced stage of neurodegeneration and dementia when the destructive processes is hard to stop.
The main risks associated with Alzheimer’s are genetics and aging. There are 4 Alzheimer-specific genes that were discovered as a part of the research, including genes with mutations that cause early forms of dementia. If genetical diagnostics were available, we would be able to predict dementia in people with these types of genes long before the symptoms would appear.
There are several non-genetical causes of Alzheimer which include trauma of head / skull / brains, length of unconsciousness periods during life time, including unconsciousness as a result of medical anesthesia, and insomnia. It’s all proved while experimenting with animals. All other hypotheses are not yet properly proved.
Ilia Pluzhnikov, Senior Researcher with the State Scientific Center “Mental Health Scientific Center”, clinical psychologist, neuropsychologist:
There are many people who kind of have genetical predisposition to Alzheimer’s, but they are able to avoid critical cognitive deficiency. When scientists started researching the reasons for that, they identified many factors that slow down dementia development, including the psychological ones. For instance, life style, physical activity, enriched environment, cognitive exercises, hobbies, level of education. There are some that are out of our control – for example, IQ.
It is well known that the dementia probability is two times less likely in people with at least incomplete secondary education. Also, people engaged in intellectual work in their life, are less predisposed to dementia when get older. Regular training of brains is an important preventive approach. Many people decide to study a foreign language or take a course for playing a musical instrument.
The level and quality of social environment is absolutely important: friends, collective forms of leisure activities, visiting relatives, volunteering. The economic status, as stand-alone factor, does not have significant association with this sickness.
If people experienced / survived psycho-traumas and shocks but were not able to get a post-traumatic relief, are under greater risk of getting dementia. However, people who survived multiple stresses of smaller scale, the ones who had intensive psycho- and mental activity, less suffer from dementia. People who are physically active, also suffer less, as their metabolism is functioning better – which therefore prevents from forming the atherosclerotic plaques.
This is an informal translation of the Russian original that can be found through this link.