We help people with dementia and their relatives

About dementia
What is dementia?

Dementia is a syndrome which affects the brain and causes steady and progressive disruption of its functioning.  The term "dementia" describes a constellation of symptoms caused by different diseases and conditions that lead to problems with memory, thinking, speech, attention and behavior.

Dementia is not a part of the normal aging process and is a disease of not only elderly people. 90% of people who live with dementia are over 65 years old, but among the elderly only 10% have dementia.

Dementia affects the ability to perform everyday activities. Brain function is significantly impaired, and this reflects on a person's usual social and professional activities.
Nowadays there are over 55 million people living with dementia in the world, and about 10 million new cases of the syndrome appear each year  

At this moment dementia is ranked as the 7th leading cause of death among all diseases and one of the main reasons of disability and dependence among the elderly around the world.

Dementia has physical, psychological, social and economical consequences not only for people who live with dementia, but also for their caretakers, family members and society in general.
About foundation
We help people with dementia and their families, and work towards creating a dementia-friendly society. 
Our vision: everyone knows how to prevent dementia, live with it and be dementia-friendly.
Our goal: to create a dementia-friendly environment, by supporting people with dementia and their families, informing society and uniting like-minded people. We aim to bring together the efforts of all parties concerned in fighting this major medical and social problem.
Since 2021, team of Nezabutni Charitable Foundation has been working on:
01
sharing information on dementia;
02
creating the programmes of support and assistance for people with dementia, their families and caretakers;
03
uniting people to create a dementia-friendly society.
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Joining efforts
Nezabutni UNITED
New challenges need immediate solutions. That is why, since the beginning of the war, Nezabutni CF have been in close contact with the families of people with dementia in order to understand and respond to their needs. We started with searching medicines in Kyiv pharmacies and then established ties with governmental and non-governmental organizations in Ukraine and abroad. That is how Nezabutni UNITED started.

Nezabutni UNITED is an initiative of the Charitable Foundation “Nezabutni” (“Nezabutni” CF) with support of The MSF Foundation, part of the international independent medical organization “Doctors Without Borders” (Médecins Sans Frontières). The aim of Nezabutni UNITED initiative is to combine all the information about assistance that people with dementia as well as elderly people and their families, can get in times of the war in Ukraine. On the Nezabutni UNITED people can receive support with finding medicines, evacuation, medical consultations and psychological aid in Ukraine and abroad. It is a platform that will combine information about assistance that can be received through Nezabutni and other organizations in Ukraine and abroad.

Information services
Understanding dementia, knowing your rights and available services are the key points in the ability to overcome obstacles and continue to have an active life. For this purpose Nezabutni Charitable Foundation runs the “School of Care'' program and holds online-workshops.
“School of Care'' is a series of free classes for relatives and caretakers where we discuss medical, social and legal questions. The workshops are moderated by the specialists of the friendly Alzrus Foundation and guest speakers.
Currently, the “School of Care” classes are being held online, with advance registration required.
Online-workshops are thematic meetings for relatives, caretakers and everyone else who is interested in the topic of dementia held by the professionals of  the Nezabutni Charitable Foundation and other invited speakers. During the meetings you can learn basic and detailed information about different aspects of life with dementia, find out useful sources and tools. Participation in the workshop is free of charge and requires advance registration.
Psychological support
When a family member starts experiencing dementia, it changes the lifestyle of the entire family. And the biggest challenges await the one who is taking care of the person with dementia. It’s a difficult and energy-consuming process that requires support from others! Especially since the wellbeing of a person with dementia directly depends on the mental state of their caretaker. With this purpose, the Nezabutni Charitable Foundation has created a support group for relatives.

At our monthly therapeutic meetings, the group talks about how to maintain and replenish your psychological and emotional resources, and how to bring meaning and happiness into the relationship between you and a person experiencing dementia.

The group is moderated by Elina Yevlanova, a clinical psychologist, psychoanalyst (master’s degree from the Côté d'Azur University in Nice, France), PhD in Psychology. The meetings also include art-therapy sessions conducted by Anna Demina, PhD in Psychology, practicing consulting psychologist (gestalt approach), co-coach at the art-therapy learning courses.

Location:
vyl. Poltavska 5, 4th entryway, 1st floor.
(Magic Stream Art Space)
Nezabutni café
New acquaintances, communication, art, music and dances aren’t just types of entertainment, but an important part of someone’s life when they have dementia, a guarantee of its fullness and meaningfulness. Nezabutni café is an event for people with dementia and their relatives, following the format of an “Alzheimer café” or “memory café” founded in the Netherlands. We held the first such event on September 14th, 2021 in Kyiv and plan to continue it on a regular basis. The goal of the Nezabutni café is to unite people who had to face the problem of dementia and make them forget about it for a while, as they enjoy conversations in a warm family atmosphere, shared activities and life itself. Nezabutni café’s program includes conversations over tea, as well as individual and group activities: dancing, games, art-therapy exercises.

Follow our news and join the next meetings in the Nezabutni café.
The symptoms of dementia
Doctors diagnose dementia when at least two cognitive functions are greatly affected. The affected cognitive functions may include: memory, language skills, understanding information, spatial orientation, judgment and attention. People with dementia might find it hard to solve a problem or control their emotions. They also might experience personality changes.

Specific symptoms of a person with dementia depend on what parts of the brain were damaged by the disease that had caused dementia and its stage.
Early stage
The symptoms of dementia often go unnoticed since they appear gradually. General symptoms may include:
  • Forgetfulness
  • Altered Time Awareness
  • Disorientation (a person may feel lost at a place well-known to them)
Middle stage
Signs and symptoms become more pronounced and may include:
  • Tendency to forget latest events and people’s names.
  • Disorientation at home.
  • Difficulty speaking (it’s difficult to choose or remember a certain word, often repetitions of something that has been said already).
  • Need to be helped with self-care.
  • Change of behavior, including wandering.
Late stage
At this stage a person starts to almost fully depend on the outside help. There is a serious memory disorder and physical signs and symptoms become more pronounced and may include:
  • Not registering the time and place.
  • Difficulty recognizing relatives and friends.
  • Growing need of help in taking care of themselves.
  • Difficulty walking.
  • Changes in behavior that may intensify and include aggression.
Feeling the changes in themselves, starting from the early stage a person may become more closed off, prone to depression and feeling scared, begin to avoid social contacts.
The symptoms of dementia and the order of their appearance at different stages also depends on the type of dementia

1
Dementia with Alzheimer’s disease accounts for 60-70% of all dementia cases. It causes a gradual decline of cognitive functions and often begins with memory loss. A person forgets where the things at home are located, a way back home from a shop, memorable dates, friends’ names or a word they need to use in a conversation.

Alzheimer's disease is characterized by two anomalies in the human brain – amyloid plaques and neurofibrillary tangles. Plaques are atypical deposits of amyloid beta protein. Tangles are knots of twisted strands made out of tau protein. Plaques and tangles break off the connection between neurons causing them to die out.

2
Vascular dementia is an impairment of cognitive functions caused by the damaged state of cerebral vessels. It can be a result of one or several strokes that happened during a certain period of time.

Vascular dementia can be diagnosed when cerebral vessels show signs of disease and cognitive functions are impaired, having a negative impact on everyday life. The symptoms of vascular dementia can appear suddenly after a stroke or they can develop gradually, following the progression of vascular disease. These symptoms vary depending on the location and size of the damaged brain area. It can affect one or a few certain cognitive functions. Vascular dementia may be similar to Alzheimer’s disease and often Alzheimer’s disease is combined with vascular dementia.

3
Dementia with Lewy bodies accounts for 20% of all dementia cases and is characterized by the presence of Lewy bodies, abnormal deposits of alpha-synuclein protein, produced inside neurons. When these anomalies appear in certain parts of the brain they cause changes in movement, thinking and behavior. People with Lewy body disease may experience significant changes regarding their attention and thought process. They can fluctuate between an almost completely normal behavior and serious disorientation in a span of a little period of time. Another typical symptom is visual hallucinations.

Dementia with Lewy bodies also includes dementia that accompanies Parkinson’s disease. If the first symptoms to show themselves are related to the motor system, then it’s often Parkinson’s disease that’s diagnosed. If the first symptoms to show themselves are related to cognitive activity, then it’s dementia with Lewy bodies that’s diagnosed.

4
Frontotemporal dementia is characterized by the progressing degenerative process in frontal and temporal lobes. The symptoms often appear after 50 or 60 years, and sometimes even earlier. Frontotemporal dementia manifests itself in two main ways: frontal variant (that includes motor disorders and personality changes) and temporal variant (that includes language disorders).

Since frontal and temporal lobes are responsible for judgment and social behavior, people with frontotemporal dementia often have problems with socially acceptable behavior. They can be rude, obtrusive, impulsive and aggressive, disregard usual duties, repeat themselves and cross the line of what’s acceptable.

There are two main types of temporal dementia:

  • Semantic dementia includes a gradual loss of words’ meaning, difficulty in finding the right words, remembering names and understanding language.
  • Primary progressive aphasia is less common and affects the ability to talk with fluency.

Frontotemporal dementia (FTD) is sometimes called frontotemporal degeneration disease or Pick's disease.
Who can have dementia?
Dementia isn’t related to race, culture or gender and thus can affect anyone.

At the same time, dementia is most often found in persons over 65 years old, with the chance of getting affected growing every year. Early signs of Alzheimer’s disease can appear in people that are 50–60 years old and in rare cases in people younger than 50 years old. The majority of people with dementia are women, but both women and men are at risk.
There are also several types of rare hereditary dementia, and so those who have a relative with dementia have a higher chance of developing it themselves.

The development of dementia can be caused by certain health problems. At a higher risk are people that don’t get treated for vascular diseases, in particular those with high blood pressure or those who are insufficiently physically or mentally active.
Prevention
Nowadays there are no certain ways to prevent dementia of any type.
Although there are proofs that particular behavior can decrease the risks of dementia, in particular in case of Alzheimer’s or vascular diseases.
1
Do physical exercises

Movement prevents neurons from dying and supports neuroplasticity. When we move and train to balance, blood circulation in the brain becomes better and nerves’ growth promoting factor BDNF releases. It keeps hippocampal neurons from dying, which are responsible for some kinds of memory and cerebellum that coordinate movements. People should train at least twice a week per 40 minutes and do strengths, balance and endurance exercises.
2
Enjoy the music

Playing the musical instruments, singing and just listening to the favorite music have been proved to be effective methods in slowing dementia and alleviation of a patient's state in case of memory lapses. Music just like sport activates numerous brain regions which are responsible for movement, memory and speech.
3
Take care of your ears

Impairment of hearing can be the first sign of dementia, but deaf-aid can stop cognitive decline. Sometimes we can by mistake interpret a person’s forgetting about some request or the topic of conversation as a sign of dementia, but the true reason may be hearing problems.
4
Play intellectual games

Sudoku, unlike crosswords, has proved its effectiveness in mitigation of dementia risks. Video games may also be useful in pursuing this aim.
5
Give up bad habits

Smoking increases the chances of dementia by 18-30%, as it harms blood vessels and neurons in the brain. If you stop smoking, the risks of dementia will decrease to the minimum in four years.  Alcohol abuse is also one of the factors that provoke dementia.
6
Eat healthy food

Besides general recommendations it may be also useful to reduce animal fat and red meat in a diet. Instead of that vegetables, lentils, root vegetables and fish must be consumed more frequently.
7
Care about the state of your health

It is important to keep under control blood pressure and weight and provide treatment to teeth and gums when it is needed. Depression which is not a rare phenomenon among the elderly must be noticed and tackled on time.
8
Take vitamins

Especially useful are B vitamins namely B9 and B12 that are found in green vegetables and liver, and in meat and fish respectively. It is extremely important to keep a normal level of vitamin D and go outside regularly and spend time in the sun.
WE EXIST
WE EXIST. PEOPLE with dementia
Are there people with dementia in Ukraine? It seems that there aren’t. You don’t see them on the streets, at shops, drug stores and even hospitals. Does one hear them? It seems that one doesn’t. Not them, and not about them.

Here, at the Nezabutni Charity Foundation, we definitely know that they exist. And there are a lot of them, more than half a million people living with their disability. They definitely exist for their relatives, who every day do tremendous work taking care of their loved ones. But are they seen by neighbors, society and government?
Yes, people with dementia exist. They deserve to live with dignity and also to be treated with attentiveness and respect, to be looked after and taken care of, to have a place in a society so they can be its fully functioning members for as long as possible.
Together with Anastasiia Nakornieieva, a talented photographer, the Nezabutni Charitable Foundation has launched a photography project “WE EXIST. PEOPLE with dementia”. The project’s cast consisted of 10 people with dementia, who are being taken care of by their families, and residents of retirement homes.
Photo exhibition presentation
took place on September 14
as part of the first cafe "Nezabutni"
TAKE PART
What can I do?
1
Become a friend of Nezabutni

The change begins with me, with you, with both small and big steps. Learning, searching for and sharing information about dementia can already become the first seeds of global change. Join us in creating a dementia-friendly environment by:

  • Sharing information about dementia at home, among your friends and at work.
  • Helping your acquaintances with dementia and their relatives.
  • Aiding in establishing a safe environment in your area.
2
Become a volunteer

Bringing about changes in society and creating a dementia-friendly environment is easier together. So let’s unite our efforts, learn and share our ideas and plans! We heartily wish for there to appear a friendly, idea-driven and fun community of people that change this world for the better together! If you want to become a volunteer for the project, join the Volunteers of the Nezabutni Charitable Foundation group and fill out a short form right away.
3
Provide financial support

We are constantly working to create and carry out useful projects and to help as many people and families as possible. But besides on-site help and participation, financial support is also required for the development of the foundation. You can make a contribution to the formation of a dementia-friendly environment by clicking on the link below. Those donations will go to cover the foundation’s administrative expenses and project development. The transferred amount cannot be refunded.