Catherine-Marie Dubreuil

Sociocultural and psychological features of perceived stigma reported by people with epilepsy in Benin

Purpose:  Stigma is a major burden of epilepsy. In sub‐Saharan Africa the few studies that addressed epilepsy stigma emphasize enacted, rather than perceived, stigma. This inattention may compromise clinical management and delay help seeking, thereby contributing to the treatment gap. We assessed perceived stigma and identified sociocultural and psychological factors explaining greater stigma among people with epilepsy (PWE) in Benin.

Knowledge of epilepsy in the general population based on two French cities: Implications for stigma

The objective of this study was to assess the knowledge and attitudes of people living in two French counties. The data were collected from 1777 adults in the general population who were interviewed. Knowledge of and attitudes toward epilepsy in these French samples proved largely favorable: 90.6% identified epilepsy as different from a mental disorder or lunacy, and 79.2% correctly identified epilepsy as a brain disorder. The majority agreed with the statements that people with epilepsy should have the opportunity to get married and that children with epilepsy should be allowed to go to school with others. However, gaps in knowledge and erroneous beliefs prevailed, notably among men, old people, and individuals with low levels of education. This study yielded encouraging results. However, further studies are needed to confirm these findings and gain a better understanding of the contribution of French public knowledge to the causative factors generating stigma in France.

Socio-Cultural Perceptions and Representations of Dementia in Brazzaville, Republic of Congo: The EDAC Survey

Background: Dementia will concern more and more people in the developing countries, but the perception people have of dementia in these areas has not yet been studied. Method: During a general population survey (EDAC) carried out in Brazzaville (Republic of Congo), 27 elderly persons suspected of having dementia and 31 of their relatives, 90 cognitively impaired elderly persons and 92 of their relatives, as well as 33 hospital workers were interviewed according to the Explanatory Model Interview Catalogue. Results: Item prominence ratings indicate that the attention was mainly on the emotional and socio-economic consequences (scores >1.0 out of 5 points). Ageing and mental stress are the main perceived causes. Hospital workers are more aware of public stigma. Conclusion: The socio-cultural components of the dementia phenomenon have to be taken into account to enforce public health and social measures.

Violence and witchcraft accusations against older people in Central and Western Africa: toward a new status for the older individuals?

Social isolation and loss of social status increase the risk of dementia, particularly in Western culture. Prevalence of dementia seems higher in the West than in areas where more traditional culture predominates (Guerchet et al., 2009). However, environmental and social changes mean that this prevalence in traditional societies is likely to increase, particularly in urban regions (Guerchet et al., 2010), where traditional transgenerational family structures tend to disappear and lifestyles are becoming more Westernized. These changes threaten the privileged status of older people, and their relationships with other family members may be subsequently damaged. New diseases that affect young adults, such as AIDS, created a climate of fear and rejection of older people, and suggestions of witchcraft may lead to abuse. Older people had always been held in Africa as belonging to a sacred age group to be treated with reverence and respect and considered as the guardians of tradition and history of the clan (a familial grouping encompassing all the descendants of a unique ancestor). Their closeness to the spirits of the protecting ancestors was thought to enable them to prevent aggression by witchcraft involving harmful spirits. It has long been believed that sorcerers have the power to command harmful spirits and thereby damage health. Illnesses have been always considered to have a supernatural dimension, despite a recent acceptance of more rational explanations. Many revivalist churches (those in the evangelical tradition) are currently being established in Africa. Their leaders are essentially “gurus” who are supplanting the traditional sorcerers and their supposed power to bridge the gap between the real and the hidden (invisible). The quest for a magical/religious explanation for illnesses leads people to look for a culprit. The older people are often suspected to mobilize these ancestors’ spirits to bless individuals and considered as using witchcraft. Consequently, it is common practice to ask the healer about the supernatural origin of serious illness, and older people are easily mentioned as potentially having used witchcraft to do harm. It sometimes happens that an older individual, who is wrongly accused, nevertheless confesses to the accusations in order to relieve the social pressure and, subsequently, develop depressive disorders. Culturally, the older people were expected to be sources of information and training, facilitating the transmission of traditional knowledge and protecting individuals in the clan against invisible forces that can cause illnesses. These valuable qualities of the older people are lost when dementia occurs. In most African cultures, dementia has no name, although the symptoms are recognized and attributed (Faure et al., 2012). Thus, socio-behavioral disorders associated with progressive deterioration of mental functions were not recognized as being pathological. Rather, they are experienced by families as harmful, intentional, and carried out by someone whose role is, by definition, to protect the clan. It is in this context that acts of violence are actually committed against concerned older people, thus running counter to customs and traditions that made them being loved, protected, respected, and even feared because of their supposed powers. Now, the older people are subject to stigma, rejection, and sometimes physical or psychological abuse. It can be suggested that dementia be classified as a mental pathology of the older people and represents failure to compensate for stress imposed by a society in which they feel they have become useless (Sink et al., 2004). Preservation of a traditional culturalmilieu constitutes a defense against the developed culture of Western countries, where individuals who lose their social status immediately become isolated and unappreciated. Dementia can appear to foreshadow death, particularly given the progressive disappearance from modern societies of religious values (Pollitt, 1996). Many workers from voluntary associations report more and more examples of older people being abandoned in villages because they have been rejected. The rural exodus that depopulates the countryside also destroys transgenerational solidarity. Institutions to accommodate the older people—denominational, charitable, and private—are burgeoning in some African countries. Representations of dementia, marked with the projections and rejections of the older persons, run the risk to become worse, while knowledge of the populations

Violence and witchcraft accusations against older people in Central and Western Africa

Social isolation and loss of social status increase the risk of dementia, particularly in Western culture. Prevalence of dementia seems higher in the West than in areas where more traditional culture predominates (Guerchet et al., 2009). However, environmental and social changes mean that this prevalence in traditional societies is likely to increase, particularly in urban regions (Guerchet et al., 2010), where traditional transgenerational family structures tend to disappear and lifestyles are becoming more Westernized. These changes threaten the privileged status of older people, and their relationships with other family members may be subsequently damaged. New diseases that affect young adults, such as AIDS, created a climate of fear and rejection of older people, and suggestions of witchcraft may lead to abuse. Older people had always been held in Africa as belonging to a sacred age group to be treated with reverence and respect and considered as the guardians of tradition and history of the clan (a familial grouping encompassing all the descendants of a unique ancestor). Their closeness to the spirits of the protecting ancestors was thought to enable them to prevent aggression by witchcraft involving harmful spirits. It has long been believed that sorcerers have the power to command harmful spirits and thereby damage health. Illnesses have been always considered to have a supernatural dimension, despite a recent acceptance of more rational explanations. Many revivalist churches (those in the evangelical tradition) are currently being established in Africa. Their leaders are essentially “gurus” who are supplanting the traditional sorcerers and their supposed power to bridge the gap between the real and the hidden (invisible). The quest for a magical/religious explanation for illnesses leads people to look for a culprit. The older people are often suspected to mobilize these ancestors’ spirits to bless individuals and considered as using witchcraft. Consequently, it is common practice to ask the healer about the supernatural origin of serious illness, and older people are easily mentioned as potentially having used witchcraft to do harm. It sometimes happens that an older individual, who is wrongly accused, nevertheless confesses to the accusations in order to relieve the social pressure and, subsequently, develop depressive disorders. Culturally, the older people were expected to be sources of information and training, facilitating the transmission of traditional knowledge and protecting individuals in the clan against invisible forces that can cause illnesses. These valuable qualities of the older people are lost when dementia occurs. In most African cultures, dementia has no name, although the symptoms are recognized and attributed (Faure et al., 2012). Thus, socio-behavioral disorders associated with progressive deterioration of mental functions were not recognized as being pathological. Rather, they are experienced by families as harmful, intentional, and carried out by someone whose role is, by definition, to protect the clan. It is in this context that acts of violence are actually committed against concerned older people, thus running counter to customs and traditions that made them being loved, protected, respected, and even feared because of their supposed powers. Now, the older people are subject to stigma, rejection, and sometimes physical or psychological abuse. It can be suggested that dementia be classified as a mental pathology of the older people and represents failure to compensate for stress imposed by a society in which they feel they have become useless (Sink et al., 2004). Preservation of a traditional culturalmilieu constitutes a defense against the developed culture of Western countries, where individuals who lose their social status immediately become isolated and unappreciated. Dementia can appear to foreshadow death, particularly given the progressive disappearance from modern societies of religious values (Pollitt, 1996). Many workers from voluntary associations report more and more examples of older people being abandoned in villages because they have been rejected. The rural exodus that depopulates the countryside also destroys transgenerational solidarity. Institutions to accommodate the older people—denominational, charitable, and private—are burgeoning in some African countries. Representations of dementia, marked with the projections and rejections of the older persons, run the risk to become worse, while knowledge of the populations

From the social representation of the people with dementia by the family carers in Republic of Congo towards their conviction by a customary jurisdiction, preliminary report from the EPIDEMCA-FU study.

For many people, dementia, its manifestations and absences, remains a mystery. Social representations, conceptions of the disease, and its images contribute, beyond medical knowledge, to the construction of the social reality of the ill person and all those who, directly or indirectly, informally or formally take care of them. They are an integral part of the disease and condition as much its management than attitudes towards those who are affected (Mushi et al., 2014). Indeed, stigma derives of social representations and is linked to negatives stereotypes (Goffman, 1963). The people with dementia (PWD) in our study come from a recent population-based survey, “Epidemiology of Dementia in Central Africa (EPIDEMCA)” (Guerchet et al., 2014). Based on the previous quantitative research in this population, we conducted a qualitative survey of an ethno-anthropological type, among PWD and representatives of customary jurisdiction of “Tenrikyo.” After we gained the confidence of interviewees (major element in a good field investigation), this survey was conducted through non-structured interviews, participant observation, and the analysis of official and personal “materials.” In total, 36 life narratives (19 in the urban area, Brazzaville, and 17 in the rural area, Gamboma) were collected among PWD and family carers speaking for some in French (official language) for others Lingala, Kituba (national languages), or even in Lari and Teke (vernacular languages). The customary jurisdiction of “Tenrikyo” or tribunal for witches (according to the Congolese jargon) only exists in urban area, Brazzaville (political capital of Congo). It is a customary jurisdiction that was created in 1972, which has been placed under the authority of a President, a retired health worker, for the last 15 years (Talani et al., 2015). Its organization and functioning were recognized and validated by a presidential decree. The filing of a complaint costs the equivalent of US

Chapter 2 – Sociocultural Factors

3.2. The price of the notification is US

Neuro-epidemiology in tropical health: Socio-cultural factors

4.8. The complainant or the defendant who speaks up in front of the judge must have paid US

Les inégalités économiques des aidants informels dans la prise en charge nutritionnelle des personnes atteintes de démences en République du Congo, résultat EPIDEMCA-FU.

21 (Talani et al., 2015). The fees are usually used to cover compensations for judges who are volunteers. The customary jurisdiction is in charge of settling amicably and fairly the minor problems, customary in nature submitted to it. Among the cases submitted to it, there are among other things: problems related to witchcraft accusations. Witchcraft accusations from family carers towards PWD was the major form of stigma. The PWD are therefore treated like witches, which motivates immediately their appearance followed by their condemnation before that customary jurisdiction. The tragic end of this condemnation is the death of the accused following a combination of various traditional rituals particularly “mystics.” Because the disease is considered mystical, among the 19 PWD interviewed, 13 (68.4%) were accused of witchcraft. They were mostly widows, three (23.1%) of them have already been presented before that customary jurisdiction and later were killed, according to the narratives of the president of the customary jurisdiction. Current anthropological data tend to show that, in the various human societies facing this phenomenon, witchcraft appears as an explanatory principle of all that happens to us when MARIA FERNANDA B. SOUSA, RAQUEL L. SANTOS, ORIOL TURRÓGARRIGA, MARCIA C. N. DOURADO AND JOSEP L. CONDE-SALA Center for Alzheimer’s Disease, Institute of Psychiatry, Universidade Federal do Rio de Janeiro, Rio de Janeiro, Brazil Dementia Registry, Aging, Disability and Health Group of the Biomedical Research Institute of Girona – Institut d’Assistència Sanitària, Salt, Spain Faculty of Psychology, University of Barcelona, Barcelona, Spain *E-mail: maria_fernandabs@yahoo.com.br

Double stigmatisation de la personne âgée autochtone et démente : résultat du programme EPIDEMCA-FU

After a critical reading of the use of the theory of social and cultural representations and the method known as qualitative in health cultural epidemiology, the authors present a series of results from personal work and a review of the literature on the representations of sociocultural mental health (psychiatric disorders, epilepsy, dementia) in sub-Saharan Africa and the consequences in terms of stigma and support. The authors outline outline what could be the basis for an efficient collaboration in research between health epidemiology and anthropology in sub-Saharan Africa, in the context of “global health”.