Abstract
Alzheimer disease is the most frequently seen and widespread form of dementia. In Georgia, there is no state program that deals with Alzheimer, which means that families of the patients stand alone when dealing with the disease. The study goal was to find out the problems and needs of the Alzheimer patients and their family members. The qualitative approach model was used for the research, which in turn was a biographical-narrative interview. The study has revealed a decreased role of a public sector in the life of people with disease. The families alone have a responsibility to take care of their patients, without any help from the others, which often worsens their already difficult economic situation.
Introduction
Alzheimer disease (AD) is most common form of dementia, a general term for a memory loss and other cognitive skills that are serious enough to restrict individual’s everyday activities. It is a progressive neurological disease caused by irreversible damage of a neurons. AD is marked by decreased function of the gray matter in brain. Disease causes various problems with some major brain functions: memory, cognitive functions, orientation, learning, speaking, and reasoning abilities. 1
AD is named after the German doctor Alois Alzheimer who first defined this disease in 1906. AD affects older adults around the age of 65 years. But Alzheimer is not just a disease of old age. 2 AD is one of the global challenges of a modern health care. In 2010, 35.6 million people suffered from confirmed cases of Alzheimer. 3 The number is only going to increase along with the aging process of the population and is projected to reach 66 million by the 2030 and 115 million by the year 2050. The majority of a new cases of AD are most likely to be observed in middle and low-income countries, also 70% of existing cases are from those countries too. 4
The total number of new cases of dementia each year is nearly 7.7 million worldwide, which means that about 600 million people will suffer from this terrible disease over the next 40 years. 5 Health care systems all over the world will struggle to provide sufficient care for such number of people from social and economic standpoint. The worldwide costs of dementia were estimated to be US$818 billion in 2015. 6
The studies have proved that AD has a major impact on patient’s social isolation which is often stigmatized. 7 Person suffering from the disease can have serious problems in a society. They can lose their jobs and lose contact with their friends; they also have problems moving around, which in turn limits their ability to socialize. All of these contribute to social isolation of these people. Socialization is the process of learning social norms, rules, laws, and values by an individual, and this process determines how an individual can adapt to a society. 8 One of main problems of patient suffering from AD is disruption in their social behavior, which can have serious implications on how they are perceived by public. 9
In Georgia, just like in all other low-income countries, the role of the state in dealing with Alzheimer is enormous. Despite this, there are no state programs that deal with Alzheimer, which means that families of patients are alone in dealing with the disease. Also, social awareness about this issue is very low. Probably, only a few people in Georgia know about the symptoms and pathogenesis of the disease. Unlike Georgia, many countries have a special care programs for patients with Alzheimer. There are no studies about this issue; even the data about number of people suffering from Alzheimer do not exist.
It is very important that patients feel support and acceptance form society instead of being stigmatized. To ensure this, it is necessary to have programs and campaigns to raise awareness about the issue. September 21 is the International Day of AD. It would be advisable if this date will get more attention—which will increase the awareness of the disease. The promotion of the significance of this date can contribute to both the governmental and nongovernmental sector to carry out some activities and programs in general. The organization “Alzheimer’s Society” was established in England; they offer the different services for the patients and their family members. It is advisable to develop similar services in Georgia, to make life easier for AD and their families.
The research goal: To find out the problems and needs of people with AD and their family members, based on interpretations and perceptions of respondents.
The Research Tasks
What are the specific issues of people with AD and their family members?
What are the basic social spheres where people with AD and their family members have some kind of barriers and obstructions?
What is the role of the government and society to improve conditions of people with AD and their family members?
Methodology
For this study, we used a qualitative approach, and the research method was biographical-narrative interview. This method gives us the information about our respondent’s biography (life experience) in the context of the study problem: The respondent tells us about all the difficulties which they have for living with people with AD; they also evaluate and interpret these difficulties. By using this method, we were able to demonstrate the difficulties of people with AD and their family members based on their experience. The study also gave us a chance to identify objective reality and some major tendencies.
Selection of Respondents
We searched for a person with AD and her family members and afterward we used a snowball sampling method to collect the data. The research was made in Georgia.
Data Collection and Analysis Process
We conducted 15 biographical-narrative interviews, which were maximally flexible and nonstructural depending on the topic and method specificity. After collecting the data, we made the transcripts and analyzed it. We did not use any program. Everything was done with our bare hands.
Ethical Problems and Limitations
The study was approved by the Ethics Committee of the Ilia State University. The protocol was in accord with the declaration of Helsinki. We conducted interviews and tried to protect the ethical standards. To avoid any difficulties, we had explained them the aim and the objectives of the research and after that we took the permission to record an interview on the audio tape. We have taken informed consent from each participant. All respondents had the opportunity to stop interviewing at any time. The results of this research are confidential and analyzed only in general form. All these actions aim to ensure the confidentiality of the respondents. The researchers were obliged to protect all the rights and ethical standards.
Results
All the respondents shared the following details: They all live with their families and none of them were taken to a shelter.
A very interesting tendency was revealed about education and employment. Some persons had a higher education, and all of them were employed in different fields. It should be noted that they had to quit their jobs after finding out that they were suffering from AD, ending their social life.
Also, it is very important to note that even though the stage of the ailment was very difficult and pretty hard to deal with, the family members of the patients have decided by themselves to leave them at home; no other participants are noticeable in making this decision.
All of the respondents note that families, where persons with AD live, are very caring and warm. They also say that their attitude toward the diseased persons has changed; they became more caring and attentive.
As respondents mention, the main obstacle of the persons with AD was the fact that they had to quit their jobs.
According to the interviews, it is noticeable that our respondents took the whole responsibility on themselves; one quote from one of them was very interesting—“We could not refuse or abandon her, we did not throw her away and did not take her to the shelter.”
There is a very interesting contrast regarding the fields of employment. Only one worked in a small entrepreneurial activity, while the others were in a public sector and owned relatively higher positions.
Only one respondent said that she never had an experience of knowing the other person with AD, unlike the others.
There was a difference in awareness about services and activities of state and nonprofit organizations. Some of the respondents had never heard about any kind of services that took care of patients.
The following common characteristics were identified in the study process:
The majority of the patients with AD live in a warm, caring, loving, and family environment.
The analysis revealed that the reaction caused by the discovery of the disease has never been catastrophic for family members, and all of them have adequately addressed the problem.
The research also revealed the decreased role of the public sector in the life of people with disease. According to family members, they do not receive any assistance from the state except the pensions. The patients with AD have many needs, such as periodic medical examinations and medications they cannot afford due to economic and social factors.
Due to the lack of public services or help, the families alone have to take care of their ill members, which in turn complicates their poor economic situation.
Discussion
The majority of people with the disease live in a warm, caring, loving family environment. The analysis reveals that the reaction caused by the discovery of the disease has never been catastrophic for family members and all of them have adequately addressed the problem and each of them feel the responsibility to the suffering person.
The research revealed that the role of the public sector in the life of people with the disease was very low. Because family members say they do not receive any services from the state, which further complicates the quality of the patient’s life. In some cases, patients did not have enough finances for their periodic medical examinations and medicines they needed. Families are forced to take full responsibility for the care of patients, which often complicates the already difficult economic situation.
The AD patients were employed before they got diagnosed, but due to the difficulty of the disease, they are deprived of their professional activities. The care services for such patients are not included in the state health care programs. In the case of AD, the level of awareness of the population is low.
The Situation in the Family
According to our interviews, people with AD live in nice, loving, warm family environments with good relatives. One respondent talked about her family situation: “Her relatives are very fond of her. We all love her and take care of her. The elderly people like such attention.” The majority of the respondents were born in Tbilisi and still live there.
Peculiarities of the Initial Period of the Disease
There were no negative attitudes toward the patient after the diagnosis. Their reaction was adequate and accompanied by the difficult feelings: We had a normal reaction. It is not a catastrophe. Because when you say that a person has a tumor, it is worse and you are more worried. You know that the disease is slowly progressive and does not endanger a human life for a long time. But at this stage it is already very difficult and the whole family suffers from such news.
The study showed that the dilemma related to taking the patient to shelter was not an issue. The decision was easy to make: Decision was easy, and we did not even mention the story of taking him to a shelter. We want him to stay with us.
Peculiarities of the Current Period of Disease
The late stage of the AD is almost always accompanied by difficulties related to the severity of disease, namely memory and eating problems. Persons with Alzheimer cannot recall their family members, including the names of their children, and any living events or places. One of the members of a family says, He is now supposedly in the last stages, because he has broken his leg and is not lying, he cannot speak, he can’t recognize us, It is difficult for him to eat.
During this period the family members are fully mobilized to provide the best help and attention they can. It can be said that family members are fully committed to their patient and to his or her needs.
Communication With State and Other Institutions
The research revealed the decreased role of the state sector in the lives of people with disease, as the family members say they do not receive any assistance from the state except pensions: No state services are provided. Not at all. We will not consider pensions.
This fact, on the contrary, is reflected on the lives of ill people, because their needs, such as periodic medical examinations and medications, are linked to a number of economic and social factors.
As for the nongovernmental organizations, the family members of AD patients do not have information about them or their activities. They (the families) do not show any interest either.
To sum up, first thing patients with AD need is more promotion not only from the state but also from the community, which will help to reduce the stigma and stereotypes. It is necessary to develop home care services for people with the AD, which will be financed by the state programs. Such programs will increase the financial availability of these services. It is also important to raise awareness about the AD. Conducting a research about the medical service availability for Alzheimer patients in Georgia and implementing the modern services for effective treatment of AD is also highly recommended.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
