Stigmatization of patients with neurocognitive disorder

Introduction

The concept of stigma was initially defined by Goffman in 1963⁽¹⁾ as attributes or characteristics that are socially discreditable. Another approach to the definition of this term belongs to Corrigan and Watson, who considered stigma as a cognitive model filled with stereotypes (negative beliefs), prejudice (agreement with beliefs) and discrimination (discriminatory actions or behaviors) towards themselves (self-stigma) or to a group of people (public stigma)⁽²⁾. Furthermore, they considered that prolonged exposure to stigma contributes to the development of self-stigma. Although both these definitions can be traced back to early research in the field of stigma, we cannot say that currently a consensus has been reached regarding a universally valid and unanimously accepted definition. Without such a definition, it becomes difficult for scientists to assess the impact of stigma on dementia.

When taking into account mental disorders, neurocognitive disorder, which is known also under the term of dementia, is a pathology which affects a large part of the elderly population. Furthermore, the concept of stigmatization has attracted the attention of specialists in recent years due to a sociocultural movement in this direction. Historically, people of older or younger ages have often been overlooked in the management of healthcare, but this manner in which society has functioned so far requires a reframing, due to recent changes in the life standards, advances in science and the increase in quality of everyday life, in general. According to the World Health Organization (WHO), over 50 million people worldwide are diagnosed with a form of dementia⁽³⁾. Compared to the general population, one could point out the fact that it is a worrisome percentage, not to mention that, at the moment, we cannot talk about a curative treatment of this pathology. Furthermore, dementia is the second leading cause of disability for people over the age of 70 years old and the seventh leading cause of death. The implications of these statistical findings are reflected at a social, economic and professional level. Beyond struggling to undertake daily activities, people diagnosed with dementia should also be evaluated in terms of their impact on family dynamic and society, since caring for them becomes a collective duty⁽⁴⁾.

Alzheimer’s dementia is the most common form of dementia (recent research studies show that 60-70% of dementia cases are diagnosed with this pathology)⁽⁵⁾. The number of people in Europe suffering from Alzheimer’s dementia is estimated at 9.9 million⁽⁶⁾. The degree of impairment and disability people who are diagnosed with this disorder experience varies, but we should keep in mind that it is a chronic pathology, with a progressive evolution, whose final stages requires constant assistance in order to carry out self-care and daily activities. Despite increasing awareness of the stigmatization of patients diagnosed with neurocognitive disorder, there are still only a few research studies that also bring forward intervention methods to address this behavior.

Stigmatization of people with neurocognitive disorders does not only target patients, but also their relatives. Moreover, we can also talk about a self-stigmatization of those who are diagnosed with this pathology, especially in the early stages, especially when they are still aware of the impairment and the changes that occur in their life at a psychological and social level.

A high number of research studies on these disorders emphasizes the increasing incidence of risk factors that will ultimately lead to the development of a neurocognitive disorder. The number of people suffering from these conditions is expected to increase. This requires to take actions at a global level for prevention, screening and psychoeducation among the population at risk. The aim to prolong the functionality of patients with neurocognitive disorders for as long as possible becomes a collective effort, which requires a good collaboration between different medical specialties, social assistance service, as well as an adequate therapeutic relationship with both patients and their relatives or with their support system. The decline in the functionality of the elderly is mainly caused by neurocognitive disorders and their complications. Therefore, the importance of the decline of the quality of life of these patients and the efficient management of the resources available in the health system towards the final goal of finding a better therapeutic and social approach to dementia cases become two of the most important research directions on this topic.

The research literature on the topic of stigmatization is deficient, especially when we address a special population category, such as that of patients with neurocognitive disorder. Although stigmatization in the psychiatric domain is a well-known concept, there are few research studies on this topic, especially on patients diagnosed with neurocognitive disorder. Moreover, in the Romanian culture, it is difficult to talk about stigmatization, being often considered as a concept borrowed from other cultures, therefore foreign, strange. Due to the fact that this is a relatively new direction in research, there is a need for long-term studies, with well-established evaluation criteria, which could certify to the incidence and importance of this phenomenon, as well as the consequences of such behavior in society.

If we take into account the hypothesis that patients with neurocognitive disorder are stigmatized in the Romanian society, we aim to validate or infirm this hypothesis.

Materials and method

This is a qualitative descriptive study.

The design of the study was by using a stigma and self-stigma questionnaire addressed to people who received a diagnosis of neurocognitive disorder or their relatives/caregivers in Mureş County, distributed both online (using the media channels), as well as in physical format, on paper, distributed by doctors and other medical personnel. Two questionnaires were distributed, one for patients and one for relatives, the one for patients including specific questions for self-stigma. The collection of data was voluntary and the participants expressed their written consent to take part in this study.

The data were collected over a period of three months to complete answers. Persons with a neurocognitive disorder were included. The collected data fell under the principles of confidentiality, being anonymous.

The study protocol was approved by the Ethics Committee of the Târgu-Mureş County Clinical Hospital, where this study was conducted.

The respondent group was divided according to demographic characteristics, in order to highlight the factors that influence the attitude and stigmatization of the patient with neurocognitive disorder in Mureş County. We aimed to highlight correlations with the place of origin, social, financial and professional status of the respondents, and statistical analysis using the SPSS program, but due to the small number of respondents, the statistical analysis was not carried out, and only a qualitative, descriptive study of the results was presented.

Results

We collected 38 responses from patients and 76 valid responses from relatives, after the distribution of the questionnaires. Of the total of 167 responses collected over a period of three months, after the initial data analysis, 53 responses were excluded from people who did not have a family relationship or were not involved in the care of a person diagnosed with a neurocognitive disorder, this being an exclusion criterion. The availability of the patients and relatives was low because they did not understand the purpose of the questionnaire and, furthermore, an important percentage (35%) of participants expressed their concern that the participation in this study would influence the diagnosis or medical pension benefits, although it was explained from the beginning that the data collected did not include identification and that the answers were confidential.

A percentage of 78% of the relatives of patients diagnosed with neurocognitive disorder admitted that they express a high degree of concern at the thought that they could also develop this pathology in their lifetime. Moreover, a percentage of 37% of them believed that the evolution of this pathology towards aggravation cannot be stopped or slowed down, which can sometimes explain the lack of confidence and diminish interest in the administration of drug treatment.

Regarding the data provided by patients diagnosed with neurocognitive disorder, a percentage of 45% admitted that, initially, they did not want to share their diagnosis even with their general practitioner, much less with friends, acquaintances or other members of the community.

Among the responses given by patients diagnosed with neurocognitive disorder and their relatives, the following stood out, which we replicate because they truly illustrate the cognitive pattern of society when it comes to this pathology.

One of the most frequent responses of male relatives was “Sometimes it’s there and we don’t talk about it”, referring to a family member who was dealing with this pathology. During a face-to-face interview, those who identified with this idea emphasized the feeling of guilt, shame and helplessness. Other responses that were common, with an equal prevalence for both genders, were “I was sure that the doctor was wrong, it can’t be true” and “For a long time, we didn’t believe and didn’t want to accept that something like that happens”. Both these answers mentioned before can also be characteristic in the phase of denial of this seriously disabling condition in one of the family members.

Regarding the question “What is Alzheimer’s disease like for your family?”, most patients diagnosed with a neurocognitive disorder provided answers such as “It’s a shame” or “It’s a big punishment”. As for the response given by the relatives, an increasing number of people provided answers on the same note, such as “It is a distress on the family”, or some considered it to be “A sword above the head, we do not know who will be next”, or even “The family curse”. All these answers reflect both the concern about the future evolution of the medical condition and the burden of care that will fall on the family or the risk of transgenerational transmission that remains threatening. The difficulty of asking for help and communicating with others about the impediments that appear during the evolution of the disease was reflected in expressions such as “Something that is difficult for us to talk about with other family members, we pretend it is not there... among us”.

To the question “What do you think could help you in reducing the stigma?”, the patients diagnosed with neurocognitive disorder and their relatives offered suggestions such as: “Let the world know that this disease is not due to alcohol consumption or a careless lifestyle”, “To see them as people and not the junk of society”, “To attend dementia webinars” and “To have access to medical treatment – nobody wants them if they have too many other diseases”.

Discussion

Most research studies on stigma have focused on identifying and documenting stigmatizing attitudes among different categories of professionals, such as nurses⁽⁷⁾, general practitioners⁽⁸⁾, caregivers of patients with dementia⁽⁹⁾, family members⁽¹⁰⁾, family caregivers⁽¹¹⁾, minority groups⁽¹²⁾, and the general population^(13,14).

Research studies that have compared the attitude of different cultures regarding the patients diagnosed with neurocognitive disorder have a marked utility in understanding the effect of immigration experiences and socio-cultural changes on the attitude of immigrants towards dementia. Zhao et al. compared attitudes toward dementia between older Chinese immigrants living in Melbourne, Australia, and older Chinese adults living in Beijing, China⁽¹⁵⁾. The results of their studies show that both populations had negative attitudes, stigmatizing beliefs and negative stereotypes regarding dementia. However, compared to their Beijing correspondents, fewer elderly immigrants from Melbourne had concerns about developing dementia, but they reported avoidant responses to dementia. These similarities and differences in attitudes toward dementia highlight the importance of also taking into account the sociocultural changes and migration-related barriers when developing specialized dementia service programs for Chinese immigrants. It is important for the population to identify the level of stigma and self-stigma in a certain region, because it contributes significantly to the decrease in the quality of life of these people.

There are a great number of protocols and health programs for the medical and social approach to patients with neurocognitive disorders, and research has been conducted on their effectiveness^(15,16). However, in order to have access to these programs, both patients and relatives must be informed of their existence and need to sign up to be part of them, therefore improving communication with these patients and their relatives is one of the first steps in addressing these issues⁽¹⁷⁾.

Access to diagnosis and treatment in the early stages of the disease is very important, thus denying and hiding the symptoms lead to a rapid aggravation of the condition and, most of the time, the cause of this phenomenon is self-stigmatization⁽¹⁸⁾. There are studies conducted on the factors that determine access to diagnosis, investigations and the establishment of treatment, but also on how the family can be supported through this process, therefore easing their burden. Investigations such as computed tomography, nuclear magnetic resonance or ocular tomography can change the perspective on the disease, normalizing the perception of the family, apart from the relevant medical information they bring⁽¹⁹⁾.

The results identified both areas in which patients and relatives noticed stigma and their qualitative descriptions, but also the factors that contribute to the stigma and self-stigma of the patient with neurocognitive disorder. This phenomenon occurs not only in our country, but all over the world, in different cultures^(20,21).

The lack of information about dementia leads to inaccurate assumptions about its effects on the person and their family and to negative stereotypes about how a person with dementia will behave. Changing the attitude towards dementia is necessary⁽²²⁾.

Conferences, lectures and discussions about dementia lead to a better identification of needs, prioritization and planning, but also to concrete actions in order to request access to services and support, to improve the lives of people living with dementia and their caregivers^(23,24).

Over the past 10 years, an increasing number of health organizations have identified the growing need for research to address dementia stigma (Canadian Academy of Health Sciences, 2019; Centers for Disease Control, 2015). The World Health Organization (2012) published Dementia: A Public Health Priority, which highlights the growing need for global action to raise awareness and reduce the stigma of dementia. Alzheimer’s Disease International (2019) released an independent report which highlighted that stigma around dementia often prevents people from seeking a dementia diagnosis, treatment and support. Likewise, numerous ways of approaching stigma and self-stigma are presented and applied in different communities^(25,26). Training in this field is essential and could be the first steps towards change.

Conclusions

This study could be the first step towards an incursion into the perception of relatives and patients diagnosed with neurocognitive disorder on stigma and self-stigma. For future research possibilities, we foresee a psychosocial intervention template to be drawn up, a template consisting of measures to educate, accept and promote support and empathy towards people who are diagnosed with neurocognitive disorders.

 

Conflict of interest: none declared  
Financial support: none declared
This work is permanently accessible online free of charge and published under the CC-BY.