Social Stigma of People with Dementia

INTRODUCTION

The history of the term “stigmatization” dates back to ancient times, but the meaning of this concept has changed over the years. Originally, the Greek word “stigma” (sign) referred to signs that were placed on the bodies of people considered inferior in the society, such as slaves or criminals [1]. Over the years, the meaning of this concept has evolved. Currently, “stigmatization” is the attitude of social (generalized) disapproval, negative reception of a specific group of people due to the mental, physical, lifestyle, value system, and other attributes that characterize this group [2].

The main goal of this review paper is to present the problem of stigma among people with dementia, discuss the results of represented research that deals with this issue, to approximate the elements that make up this process and to present the negative consequences of stigma. The term “stigma” was introduced to social sciences by the American sociologist Erving Goffman, who in 1963 published a book of title “Stigma: notes on the management of spoiled identity” [1]. According to numerous sources, the term “stigma” or “stigmata” is a highly discriminatory property, which means that a given person is perceived as being diminished, different, stained, and even “not fully human” [1, 3]. Goffman classified “stigma” into three separate groups. The first group was associated with deformities and physical distortions of the body. The second contained the human psychic sphere, including, inter alia, mental disorders and illnesses or addictions. The third involved stigmatizing groups of people taking into account their race, origin, nationality, or religion [1]. Over the years, the term stigma has been developed by other authors in various areas.

In their work, Cook and Wang distinguished three dimensions of the stigma caused by the disease [4]: 1) auto-stigma (a person’s reaction to his illness); 2) personal stigma (attitude towards the stigmatized person); 3) perceived stigma (views on the attitudes of other people towards stigmatized people) [4].

Additionally, Piotr Świtaj in his book “Experiencing social stigma and discrimination” draws attention to four fundamental elements that make up the process of stigmatization: labelling, stereotyping, separating “us” from “them” and loss of social status [3]: 1) Labelling - consists in highlighting and naming some socially important differences. Often, the label is not a property of the person, yet it is attributed to it, while its legitimacy remains an open question; 2) Stereotyping - is linking the highlighted social categories with negative stereotypes; 3) Separating “us” from “them” - a negative stereotype that is associated with a certain category of people and is the reason for considering them to be different from the entire “normal” rest. Affects the rejection, exclusion, and discrimination; 4) Loss of social status - the next stage of stigmatization and its complement [3].

It has been also claimed that stereotypes are one of the simplifying mechanisms that allow a man to cope with the complex social environment, because we are not equipped with the ability to perceive all the nuances of the world [5]. Stereotype are certain features attributed to a specific group of people. The cognitive basis for their creation is categorization. When classifying people, group labels are used that emphasize the similarity of people belonging to the same category. Besides, according to the research on labelling, people as a rule are inclined to emphasize those qualities that allow them to perceive the group they belong to as dominating over a strange group. These labelling trends cause creating a positive stereotype of one’s own group and a negative one of a strange one. Cognitive nodes in the stereotypical network are also associated with emotional reactions, which is associated with the appearing of prejudices against a specific group of people. Prejudice is treated as an attitude, while discrimination is understood as negative behavior toward members of a socially defined group [5].

STIGMA AND DEMENTIA

Stigmatization is a common phenomenon in the modern world. The stigma associated with disease is associated with several conditions in medicine. Numerous works have been written describing the impact of stigmatization on patients with mental illnesses [6, 7], psoriasis [8], or after a stroke [9].

Stigma is increasingly affecting people with dementia. The term dementia refers to a medical condition in which there is a progressive impairment of intellectual functions. People with dementia have problems with memory, slow thinking, behavior disorders, and difficulties in everyday functioning [10]. According to the “World Alzheimer’s Report of 2019”, the number of people living with dementia will increase more than threefold from over 50 million currently to 152 million by 2050. It is estimated that in Poland there are 370–460 thousand patients with Alzheimer’s disease and, in total, over 600,000 with dementia. The report also showed that every 3 seconds someone in the world develops dementia, but most people with dementia do not receive a diagnosis or a support. Alzheimer’s disease and other dementias are the fifth largest cause of death in the world [11]. Results of the world’s largest survey of attitudes toward dementia conducted on nearly 70,000 respondents from 155 countries and territories, reveal a surprising lack of global knowledge about dementia, because two-thirds of people still think that dementia is a normal stage of aging, not a neurodegenerative disorder. The respondents of the survey were people with dementia, caretakers, healthcare professionals, and other interested persons. 62% of healthcare workers still also believe that this is a normal aging process. One in five people attribute dementia to bad luck, almost 10% to providence and 2% to spells [11]. On the other hand, studies conducted on representatives of several ethnic groups have shown that the majority of surveyed Latinos and Asians consider Alzheimer’s disease as an infectious entity that can be cured [12, 13]. There were also more controversial statements treating dementia as a punishment sent by God or the integration of evil spirits [13, 14]. Despite the existence of so many views on this subject, the authors agree on the occurrence of the problem of stigmatization of people with dementia in society [4, 15].

FACTORS CONDITIONING THE STIGMATIZATION OF PEOPLE WITH DEMENTIA

Stigmatizing attitude, stereotyping, withdrawal from people with dementia can have many factors which determine the stigmatization of these persons. Important factors that may influence the perception of people with dementia, including: gender, age, education, cultural differences, religious level, and the severity of cognitive disorders. Due to the limited volume of this review article, selected research results have been included in the review of the literature.

Creating a stigmatizing attitude in a given society is conditioned by many circumstances. An important factor influencing the perception of people with dementia is gender. Studies conducted in Australia have shown that stigmatization is more severe among men than among women. They also pointed out that demonstrating a discrimination toward those with dementia increases with the age of the patient. In turn, other conclusions were reached by researchers from France as a part of the survey conducted by the “STIGMA survey”. The results of the study showed that among the population in older age stigmatization was less severe [15–17]. Another factor that may affect the reception of people with dementia is education. Observations that were conducted on the Arab population in Israel showed that a lower level of education was associated with greater aggression, anxiety, and rejection attitudes toward people with dementia. These results are different compared to studies previously conducted on non-Arab population in this country. Studies have shown that education had no effect on the emotional response of the subjects [18, 19]. You can see the great importance of cultural influence on attitudes created by people who live in the same area. An important factor affecting the perception of people with dementia often related to the standard of living of the society, traditions of care for the elderly, level of education, and religiosity is a cultural difference. The world’s largest survey of attitudes toward people with dementia reveals a surprising lack of knowledge about Alzheimer’s disease worldwide. As mentioned above, the survey reached almost 70,000 people from 155 countries and territories. The respondents of the survey were people with dementia, carers, healthcare professionals, and other interested persons. The report reveals an amazing approach to dementia because two-thirds of people still think that dementia is a normal stage of aging, not a neurodegenerative disorder. 62% of healthcare professionals still think this is a normal sign of aging. The report also showed that about 50% of people with dementia who were surveyed feel ignored by health professionals. 48% of respondents believe that the memory of a person with dementia will never improve, even with medical support, while one in four thinks that we can do nothing to prevent dementia. This shows that the lack of knowledge about dementia leads to inaccurate assessments of its impact on the patient and his family, as well as negative stereotypes about the behavior of a person with dementia [11, 20]. Another study on a larger group of immigrants also showed a large misunderstanding of the very nature of dementia. As many as 60% of respondents confused dementia with normal aging and were convinced that it affects everyone at a certain age. The same percentage of respondents believed that dementia did not affect the patient’s life expectancy. It is interesting that the education level of the survey participants did not impact their discrimination toward dementia patients. Even having a person with dementia in the family was not associated with a lower level of stigma [15, 21]. In other studies, other results were obtained and it was shown, that contact with a sick person positively influences the decrease in stigmatization of that person [15, 22]. In another study of 313 people, the attitude towards dementia of Nigerian residents was checked. Dementia was associated with embarrassment and a sense of shame in 36% of respondents [15, 23]. 28% of respondents showed that people with dementia are not taken seriously. These results indicate a significant difference in the perception of this disease compared to the population of Asian origin. Also, in Australia, surveys were conducted on 1,000 respondents, 68.5% of them declared Australian origin, while the rest of them came from other cultures. Studies have shown that stigmatization was more intensified within non-English speakers and those born outside Australia [16]. This shows how important the ethnicity of a particular society has on a discriminatory attitude. Research conducted on a group of people of Asian, African-American, and Asianorigin have shown that Anglo-Saxons have more knowledge about the characteristics of Alzheimer’s disease compared to other groups [12]. This shows that different perceptions of dementia may be related to the insufficient knowledge of the respondents. The severity of the stigma phenomenon is also dependent on other factors. Another of them is the level of religiosity. It was proved that believers are more likely to encounter lower levels of aggression and positive feelings toward people with Alzheimer’s disease [18].

It is worth mentioning the relationship between the patient’s cognitive ability and his stigmatization and subjective feeling of exclusion. In their research, Lion et al. compared the experience of stigma (with social isolation, social rejection, and internalized shame as components) among people with dementia and mild cognitive impairment in Italy, Poland, and the United Kingdom and to investigate possible relationships with demographical and clinical outcomes. People with dementia in the UK experienced a higher level of stigmatization than people in Italy and Poland. The experienced stigmatization negatively correlated with social support and quality of life. People who experienced a higher level of stigmatization scored higher in negative mood subscale. It is shows that, there is a strong need for research into the individual experience of people with dementia across the world. This could help in providing appropriate support and care services for seniors in a given culture, that match their needs and preferences [24].

CONSEQUENCES OF STIGMATIZATION OF PEOPLE WITH DEMENTIA

Dementia and associated stigmatization affect the occurrence of negative consequences not only for the sick but also for their environment. The study presented in the World Alzheimer’s Report “Attitudes towards dementia” in 2019 reveals that stigma around dementia prevents people from seeking information, advice and support, and medical help that could dramatically improve their length and quality of life in connection with one of the fastest growing causes of death in the world. Stigmatization caused by the disease is associated with some mental health problems, focuses on age in the absence of available treatments and even boils down to non-medical factors. In fact, however, there are many forms of support around the world and conversations and planning can help people live as long as possible [11]. It also acts as a barrier limiting people from dramatically improving their lives with dementia around the world. Therefore, the consequences of stigmatization are extremely important to understand. At the individual level, stigmatization can undermine life goals and reduce participation in significant vital functions and reduce the level of well-being and quality of life. While at the social level, structural stigmatization and discrimination may affect the level of funding for care and support [11].

“Stigmatization results from fear. Fear, in turn, creates silence that perpetuates ignorance and misunderstanding” [25]. This is reflected in the research which show that dementia associated with Alzhei-mer’s disease brings many fears among patients and their caregivers which leads to avoiding social interactions resulting from fear and shame [25]. The consequence of the impact of the stigma on the patient’s behavior may contribute to concealing the disease, and delay the moment of seeking help and implementing appropriate treatment [17]. Stigmatization was recognized as one of the most important factors that affects the delay of diagnosis in people with dementia [26]. Stigmatization also affects the family and carers of the sick. Lack of knowledge about dementia leads to inaccurate assessments of its impact on the patient and his family, as well as negative stereotypes about the behavior of a person with dementia. These people, having constant contact with the sick themselves, may be affected by the problem of stigma. This phenomenon, called ‘stigmatization through association’, may also concern the partners, friends, and medical staff [27]. This is indicated by many studies which proved that people from the stigmatized family can experience shame, fear, anger, self-esteem, a sense of helplessness, or lack of support [15, 29]. In turn, studies conducted on people with schizophrenia affected by stigma have shown that families and medical staff can also take a discriminatory approach. Such an attitude may cause the deterioration of the patient’s quality of life by exclusion [30].

In turn, other studies indicate that stigmatization also pertain to doctors who look after patients with dementia. As demonstrated by the results of studies conducted in eight EU countries, primary care physicians have shown a reluctance to diagnose dementia at an early stage of diagnosis, which has delayed the treatment process [31]. This type of stigmatization may result from a sense of helplessness which comes from the limited therapeutic options of patients. Greater intensity of stigmatization was demonstrated during the contact with a patient in more severe stages of the disease [32].

CONCLUSION

The phenomenon of social stigmatization is common in the present world. Despite many years of observation, the nature of this process has not been fully explained. The development of stigma involves mechanisms of the human psyche that are not fully understood. The problem of stigma affects many people, and it is also present in medicine and affects people with dementia. Despite this, we can observe its negative consequences not only for the sick but also for their environment. Stigma reduces self-esteem, causes fear and anxiety, and worsens the quality of life of stigmatized people.

In systematic reviews of the literature on the ef-fectiveness of interventions reducing stigmatization, there is little data to find specific actions to improve knowledge about dementia, reducing stigmatizing attitudes and behaviors. The development of effective interventions is important because negative attitudes have an adverse effect on the quality of care. For this reason, it is important to conduct further research on the nature of this process in order to create appropriate actions that will reduce this phenomenon.

DISCLOSURE STATEMENT

Authors’ disclosures available online (https://www.j-alz.com/manuscript-disclosures/20-1004r1).