The London School of Economics and Political Science
Dissertation
Academic Year 2020-2021
Rural-Urban Differences in Dementia Perceptions in South
Africa.
Why some traditional beliefs are more likely to be associated with rural visà-vis urban areas and what are the implications?
1
Table of Contents
Abstract
3
1. Introduction
4
1.1 Introduction to Dementia
4
1.2 The Case of South Africa
6
1.3 Study Objectives
7
2. Literature Review
8
2.1 Introduction
8
2.2 Themes
9
2.3 The Potential for Addressing Rural-Urban Disparities in Dementia Perception 16
3. Methods
19
3.1 Data Collection
19
3.2 Data Analysis
21
4. Results
22
5. Analysis and Discussion
28
6. Conclusion
34
Bibliography
36
Appendix 1: Interview Guide
43
Appendix 2: Tables
44
2
ABSTRACT:
Dementia represents globally one of the main burdens to society; nonetheless, in
resource-poor regions such as South Africa the problems are enormous and are emphasized
by beliefs around dementia. The literature recognizes that beliefs like witchcraft are present
especially in rural South Africa. There is yet no comprehensive study about rural-urban
differences in dementia perceptions in South Africa and the publications do not explain
why witchcraft is more associated with rurality. This research aims at understanding the
different dementia perceptions in rural-urban South Africa and deepening the knowledge
of why some traditional beliefs are more associated with rural communities, seeking what
are the implications. Through semi-structured online individual interviews, I analysed the
different types of perceptions, causes and consequences, giving particular attention to the
rural-urban dichotomy. The thematic analysis shows that rural-urban differences in
dementia perceptions exist in South Africa and in rural areas, perceptions go far beyond
witchcraft. On the other hand, in urban areas, dementia is seen more as normal process of
ageing. The presence of beliefs is stronger in rural areas: the main causes found are culture,
religion and lack of knowledge, creating negative implications for diagnosis, treatment and
attitudes in rural areas compared to urban ones. Finally, this study arises from the idea that
it is important to understand dementia perceptions and how these affect people to better
apply specific policies for dementia care in rural versus urban areas of South Africa.
3
1. INTRODUCTION
1.1 Introduction to Dementia
Ageing represents a global trend that the world is experiencing at a rapid pace. Low-andmiddle-income countries have the fastest rise of ageing; here the number of older people is
expected to reach 1.1 billion by 2050, which will be more than two thirds of the total old
population (World Population Ageing 2019). It is important to consider the rise in older people
in Sub-Saharan African regions and its correlated societal issues, although the literature has
not given enough consideration to this geographic area: according to Aboderin and Beard
(2015), the estimates in Sub-Saharan Africa will increase from 46 million people of 60 years
old and over in 2015, to 157 million by 2050 (Aboderin and Beard, 2015).
On one hand, reaching an old age represents one of the main accomplishments in human
history driven by socio-demographic changes such as decreasing fertility rates and increasing
life expectancy; on the other, it brings different burdens on society, especially for health
policies in low-to-middle-income countries that are not yet prepared for the consequences.
Here, the process of ageing is the main driver of the burden of disease because of age-related
diseases and non-communicable diseases such as dementia account for most of the burden
(Prince, et al., 2015).
Dementia is a broad term used to identify disorders related to cognitive impairment caused
by damaged brain cells in different regions of the brain, depending on different subtypes of
dementia. The most common form of dementia is Alzheimer’s disease (60-70% of the cases)
(World Health Organization, 2018); however, there are different conditions affecting patients
worldwide, such as vascular dementia, frontotemporal dementia, substance induced persisting
dementia and HIV dementia (Alzheimer’s South Africa, 2021). Although dementia’s most
common indicator is memory loss, there are several other multiple skills that could be affected
4
(personal behaviour, cognitive abilities, and daily life). It is important to note that although
ageing is the most ordinary risk factor, dementia does not represent the common process of
ageing (World Health Organization, 2018). Dementia is seen as the main contributor to
disability of older people and the fifth cause of death in middle-income countries; it offsets the
longevity trend affecting every year 50 million people globally, of which the majority (63%)
live in low-to-middle-income countries. This number is projected to increase to 152 million
with around 71% living in low-to-middle-income countries by 2050 (De Jager, et al., 2017)
creating a challenge for health systems (Prince, et al., 2015; World Health Organization, 2018).
Dementia prevalence in Sub-Saharan African regions is estimated between 0% to 10.1% (De
Jager, et al., 2017).
Since dementia causes health and social burdens, the importance addressed to its prevention
and treatment is increasingly acknowledged by governments, considering its significant effect
on the socio-economic development of a country. The cost of dementia that low-to-middleincome countries are facing is enormous, increased by poverty, political instability and cultural
factors (Prince, et al., 2015). However, despite the recent effort of the WHO to create a global
action plan for dementia 2017-2025 (World Health Organization, 2018), the epidemiologic
situation of dementia in low-to-middle-income countries remains vague due to lack of primary
data, research (Prina, et al., 2019), caused by limited health-care (Maestre, 2012), lack of
knowledge and beliefs around dementia. The situation is worse in Sub-Saharan African
regions, where people might not recognize dementia and believe it is linked to spiritual
thoughts since people with dementia gradually lose their social functions and might develop
feelings of confusion (Mkhonto and Hassen, 2018). In this context, I think that it is important
to consider cultural and religious perceptions about dementia and the related consequences as
a priority for research and educational policy plans in low-to-middle-income countries, to
increase awareness and decrease the burden of dementia.
5
The Case of South Africa
South Africa is an upper-middle country experiencing a fast process of ageing, mainly
due to the experienced decline in fertility rates (Potocnik, 2013) and decrease in mortality rates
(Phaswana-Mafuya N, et al., 2012). It is the region with the highest number of people aged 60
and above in Africa, around 7% (2.9 million) of the total population in 1997, expected to rise
to 14.8% by 2050 (Phaswana-Mafuya N, et al., 2012). The growing number of older people
puts a burden for the demand of health and social care, especially for higher prevalence of
dementia (Kohler and Behrman, 2015). According to the 2011 South African census, around
2.2 million people were affected by a form of dementia (Alzheimer’s South Africa, 2021);
however, there are no surveillance data for people living with this condition. A more recent
study from the 2015 World Alzheimer Report estimated 186.000 people with dementia in South
Africa in 2015 (75% of which were women), expected to increase to 275.000 in 2030.
Therefore, the data about the prevalence of dementia are controversial and have not been fully
established. Moreover, what contributes to exacerbate the situation is that there are few large
research studies about dementia in South Africa (Jacobs, et al., 2019).
In South Africa, inadequate diagnosis and lack of data are induced by beliefs and little
dementia awareness, creating huge societal consequences (Alzheimer’s Disease International,
2019). Is important to understand the socio-cultural context and beliefs that influence them.
There are few studies in the literature about dementia perceptions in South Africa; however,
some recent studies agree that traditional beliefs in witchcraft, and perceptions about modern
medicine treatments cause stigma for people living with dementia and other conditions, such
as HIV and Parkinson’s disease (Khonje, et al., 2015; Audet, et al., 2017; Guerchet, et al., 2017;
Mokaya et al., 2017; Mkhonto and Hanssen, 2018; Alzheimer’s Disease International, 2019).
Other studies identify dementia in South Africa as perceived as witchcraft instead of a disease,
belief that has been found more prevalent in rural areas of South Africa (Mkhonto and Hanssen,
6
2018); nonetheless, a study in an urban community reported that only 10% of the individuals
knew what dementia means (Khonje, et al., 2015). The literature does not go into details in the
differences between rural and urban perceptions about dementia and the possible differences
about beliefs, traditions and relevant consequences.
1.2 Study Objectives
Understanding the perceptions and experiences of people in the context of dementia in
South Africa is essential to address the social burden of disease created and to implement
appropriate interventions for dementia patients and their family needs. The analysis of the
cultural context in which dementia lies in South Africa helps to comprehend the health and
social challenges that people are living and it is the first step to raise awareness and education
to further meet local demands. In addition, while some studies about beliefs and knowledge
associated with dementia in South Africa exist, there is a lack in the explanation of how
different communities in rural and urban areas perceive dementia and how these differences
affect dementia diagnosis, treatments, and attitudes.
The aim of this study is therefore to understand the different views on dementia and their
consequences in rural versus urban areas in South Africa in order to address the main
significances of cultural thoughts, such as stigma, discrimination, even violence, to raise
awareness and increase the opportunities to better health and social care in South Africa for
dementia patients. The consequences created by the perceptions and traditional ideas are often
as important as dementia itself, undermining not only the well-being and quality of life of
people affected by dementia, but can also impact treatments and the levels of funding for health
and social care in the country (Alzheimer’s Disease International, 2019).
7
2. LITERATURE REVIEW
2.1 Introduction
Three existing systematic literature reviews analyse awareness challenges for mental
health, witchcraft beliefs around dementia and the challenges of living with dementia in SubSaharan Africa (Alzheimer’s Disease International, 2019; Spittel, et al., 2019; Brooke and Ojo,
2020); however, no systematic review was made specifically for South Africa, neither the
literature focuses on rural-urban disparities in dementia perceptions. In South Africa, the
research on societal views about dementia is not broad (Jacobs, et al., 2019) and from the
literature it is possible to understand that the interest in dementia perception in this country has
been increasing only in the last years.
In this section, I reviewed the main publications related to dementia perceptions in
South Africa by grouping thematically the existing literature on the subject matter to better
understand:
(i)
What are the existing perceptions around dementia in South Africa;
(ii)
What are the perceptions more likely to be associated to dementia in rural visà-vis urban areas.
A thematic review of the literature was conducted using three electronic databases
(PubMed, CINAHL and Journals@Ovid) between May and July 2021 with the aim of
examining current research on dementia, mental health knowledge and perceptions in South
Africa, to identify the main factors influencing this topic and to develop specific aspects for
my research to help policy-making processes. An analysis of the content was made: findings
on knowledge and awareness challenges and discrimination-stigmatization of people with
dementia and mental illnesses were recognized and classified. Key words searched in
combination included: “dementia”, “mental health” or “Alzheimer” and “South Africa”, “rural
8
South Africa”, “urban South Africa”, “perception”, “awareness and knowledge”, “stigma”,
“beliefs”. Inclusion criteria for selecting papers were: dementia or mental illness knowledge,
awareness in rural and urban South Africa, attitudes toward people with dementia in South
Africa, including stigma and traditional beliefs, primary research studies in South Africa and
published in English until July 2021. Studies in languages other than English, related to other
countries in Africa or other health conditions were excluded. 9 studies were identified for
inclusion in this research (4 for rural and 5 for urban communities) and each study was
summarized (author, year of publication, rural-urban South Africa; title; aim; data collection,
analysis and participants and discussion/conclusions) (See Table 1 in Appendix 2). A manual
thematic analysis was done by reading and analysing the studies several times to extract the
major themes. Three overarching themes emerged from the data and the 9 relevant
publications: (i) dementia knowledge and awareness; (ii) traditional beliefs (witchcraft); (iii)
consequences (attitudes toward people with dementia, stigma and other). In all the three
themes, I put particular focus on the differences between data found in rural and urban areas of
South Africa.
2.2 Themes
From the analysis of the 9 relevant publications, dementia perception in South Africa
has been divided into three main themes ((i) dementia knowledge and awareness; (ii) traditional
beliefs (witchcraft) (iii) and some consequences). In the following paragraphs, which I
illustrate the three over-arching arguments in detail.
(i)
Dementia Knowledge and Awareness:
The major theme in all the 9 publications is the deficient knowledge and awareness
about dementia. There is a general understanding that dementia is not perceived as a medical
condition, but as normal part of the ageing process (Zimba Kalula, et al., 2010; De Jager, et al.,
9
2017). Both in the rural and urban areas analysed (Cape Town, Eastern Cape, Western Cape,
Tshwane (Gauteng), Kwa-Zulu Natal (KZN), Makhuduthamaga (Limpopo), Dr Kenneth
Kaunda District, Lenasia Johannesburg (Gauteng)) dementia was poorly understood.
For urban areas, the study between 2003 and 2008 at the UCT/GSH (The University of
Cape Town/Groote Schuur Hospital) Memory Clinic showed that there was lack of dementia
awareness from family members and primary care workers (Zimba Kalula, et al., 2010).
Second, in the 100 individuals of the Xhosa speaking community in the urban area of
Khayelitsha (Western Cape Province) analysed in 2012, only 10% of the participants knew
what dementia is. Moreover, the study highlighted that the variables sex and employment had
a significant relationship with dementia knowledge: it appeared that males knew more about
dementia than females and unemployed knew more than employed (Khonje, et al., 2015). This
last result could be due to the cultural structure of the family, that, following the concept of
“ubuntu”, takes care of family members affected by dementia. Since individuals with dementia
require huge time for daily care, informal carers could be identified in people who do not work
or wife/husband, or children (Jacobs, et al., 2019). Finally, one particular challenge and
limitation of this urban study about the Xhosa speaking community in Khayelitsha, was the
lack of a word for “dementia” in the Xhosa language (Khonje, et al., 2015); therefore, this
contributed to the limited knowledge about dementia.
For rural areas, a study that explored the dementia prevalence in a rural black
community of 200 individuals showed that milder dementia was underdiagnosed because of
lack of dementia awareness. The services in the rural community were not available, there was
low awareness and preparedness for diagnosis. This was due to the bigger focus on treatable
diseases (De Jager, et al., 2015). Second, according to Sara Benade (2012), Alzheimer’s disease
and any form of dementia in general was not recognized as an illness in the rural areas of the
KZN province, and this is because of a lack of awareness (Benade, 2012).
10
(ii)
Traditional Beliefs (witchcraft):
Although many studies about mental health and related conditions beliefs in South
Africa do not yet exist (Mavundla, et al., 2009), it is common that witchcraft is associated to
sources of negative accidents, illness, infertility and social conflicts (Mkhonto and Hassen,
2018) and most mental illnesses are seen under the category of “madness” (Mavundla, et al.,
2009).
2 out of the 5 publications on dementia perceptions in urban communities in South
Africa showed the presence of thoughts in which dementia was seen as a form of witchcraft:
the study of the urban Xhosa speaking community in Khayelitsha found that 28% of the
participants thought dementia was a witchcraft, 14% agreed dementia was a punishment from
God and 18% from the ancestors (Khonje, et al., 2015). Moreover, findings from a large
international study complemented by qualitative interviews of family members and 7 nurses
working in a dementia context in the city of Tshwane (Gauteng municipality) demonstrated
that dementia, rather than being seen as illness, was frequently associated with witchcraft:
people were labelled as witches: these phenomena happened more to elderly women (Mkhonto
and Hassen, 2018). In fact, the label of “witches” has gender issues in which women are the
main target for these traditional beliefs, notably if living with dementia, and being from a lower
social status (Jacobs, et al., 2019). Especially, women living alone with dementia and with dark
complexion are targeted to be witches because they are “able to blend into the darkness to
carry out their wicked actions” (Benade, 2012, pg. 275).
All the 4 publications related to rural communities in South Africa agreed that dementia
was mainly associated with witchcraft in rural areas: in a sample of 200 individuals of a black
rural community, the poor knowledge about dementia resulted to be significant in the rise of
the risk that dementia symptoms were described as witchcraft and the risk of elderly abuse and
11
violence (De Jager et al., 2015). Second, the first large dementia prevalence study in rural South
Africa found that in the traditions of rural Xhosa speaking community dwellers in the Eastern
Cape beliefs surrounding dementia (witchcraft) were common (De Jager, et al., 2017). “It was
important to explain dementia as an organic condition since beliefs surrounding dementia as
being witchcraft and curses were common in the local culture” (De Jager, et al., 2017, pg.
1089). Third, results from people suffering from dementia in the rural communities of KZN
showed that dementia patients with unusual behaviours were seen as witches or as being
enslaved by an evil spell (Benade, 2012). Finally, the study analysing the caregiver experience
in mental illness in the Makhuduthamaga municipality in Limpopo showed that patients had
witchcraft beliefs towards mental illness and mainly turned to witchdoctors to be cured
(Mavundla, et al., 2009).
(iii)
Consequences: Attitudes Towards People with Dementia
Attitudes from family members, community and health workers are important to
understand the perception of dementia in South Africa. Individual and community beliefs,
personal characteristics and situational circumstances are recognized to be the main
determinant of people’s attitudes toward patients with mental illness (Egbe, et al., 2014). The
publications on urban and rural communities acknowledged the presence of negative attitudes
related to dementia perceptions. In the urban areas analysed, the study of the Xhosa speaking
community in Khayelitsha (Western Cape) determined that the relationship between
knowledge of dementia and associated attitudes was not significant (Khonje, et al., 2015).
Therefore, it is possible that the attitudes towards people living with dementia could be
influenced by the understanding of the term and the culture of the community taken into
consideration.
12
The community analysed had tolerant attitudes toward people with dementia, stating they
would share their home with them or send them to nursing homes (Khonje, et al., 2015).
However, almost half of the participants were afraid of dementia and thought people with this
condition were violent, aggressive. Finally, few people felt ashamed for a family member with
dementia (Khonje, et al., 2015). This last feeling toward people with dementia is common also
in other studies.
Findings from the city of Tshwane also highlighted the fear of family members and
nurses working in the dementia context, and the study mentioned negative practices toward
people living with dementia, such as being harassed and beaten (Mkhonto and Hanssen, 2018).
The last study for urban areas, which included some descriptions of the attitudes toward
mental illness in South Africa, was based on semi-structured interviews conducted with 10
South African Muslims general practitioners in the area of Lenasia (Johannesburg). The study
found that patients with mental illness tent to hide their problems from their family and
community due to a big feeling of shame. In addition, participants stated that some of their
patients suffered from stress-related conditions, such as headaches, backaches, because of their
embarrassment and regularly consult traditional healers (“maulanas” Muslim clergy and
“sangomas” African traditional healers) since they are cheaper, therefore many patients are
reluctant to go to mental health specialists (Mohamed-Kaloo and Laher, 2014).
The publications on rural communities also acknowledged that the risk created by
negative traditional beliefs around dementia, such as witchcraft, increased the phenomenon of
elderly abuse and violence (De Jager, et al., 2015). Studies in the KZN region emphasized the
presence of beliefs in witchcraft that brought the idea that older people with unusual behaviours
have dark complexions. Women were the most vulnerable category, especially if affected by
dementia, and in the past were burned or stained by members of the community (Benade, 2012).
13
Finally, the study about caregiver experiences in the mental health field in the
municipality of Makhuduthamaga (Limpopo) highlighted that family caregivers’ experiences
were negatively conceptualized because of beliefs that put responsibility on the individual for
his/her mental illness’ control, which had an outcome in the social ostracism of individuals
affected. People affected by mental illness were seen as a burden to the community and were
often punished through social humiliation and isolation from the community and even healthcare professionals (Mavundla, et al., 2009).
Stigma
3 studies from the 9 analysed showed the presence of stigma in urban communities: in the
study of the urban area of Khayelitsha (Western Cape), most of the participants saw people
with dementia as violent and thought it was better to avoid them (Khonje, et al., 2015). This
thought creates negative consequences such as loss of social interaction and social isolation of
people affected by this condition.
Second, the study in the Lenasia area (Johannesburg) found high prevalence of stigma for
mental illness in the Lenasia community, which was attributed to lack of knowledge
(Mohamed-Kaloo and Laher, 2014).
Finally, the study made in the Dr Kenneth Kaunda District analysed 77 adults, including
nurses, counsellors, social workers and service users in the mental illness context, showed the
presence of stigma. In this district, negative prejudices and stereotypes were found for people
with mental illness, by depicting them as violent and dangerous from neighbours to church
members. Family members, friends, members of the community and health providers were
reported to promote psychiatric stigma, created from the negative views of the society, that
lead to big barriers for the access to health-care and illness management. Psychiatric stigma
increases the presence of other types of stigmas by decreasing self-esteem and increasing
14
marginalization from the community, unemployment and depression. It is acknowledged that
many health providers create psychiatric stigma, especially with the reorganization of the
mental healthcare and its assimilation into the primary care sector in South Africa: many
general practitioners who have never been in contact with people with mental health disorders
have to provide diagnosis and treatments to people with mental illnesses. Moreover, from the
study, mental health professionals were the most pessimistic about the outcomes in the longrun for people with mental disorders (Egbe, et al., 2014).
2 of the 9 publications in the rural community of Makhuduthamaga (Limpopo) and rural
black community in South Africa stated that stigma was a limitation in rural areas of South
Africa and acknowledge the urgent need for dementia de-stigmatization and the need for the
inclusion of cultural explanatory components into the explanation of mental illness (Mavundla,
et al., 2009; De Jager, et al., 2015).
Other
The consequences of lack of dementia awareness, knowledge, and traditional beliefs,
with the consequent phenomena of stigma, discrimination, and negative attitudes toward people
with dementia, are enormous and are acknowledged by all the 9 publications analysed in this
research. Lack of awareness and knowledge have been estimated to be the main causes of
stigma and prejudices, together with traditional beliefs such as witchcraft (Mohamed-Kaloo
and Laher, 2014; Khonje, et al., 2015; Mkhonto and Hassen, 2018). The main consequence
established was that lack of awareness, traditional beliefs and stigma limited the diagnosis and
the management control of dementia which often was not identified neither from family
members, nor from health practitioners (Benade, 2012; De Jager, et al., 2015; Khonje, et al.,
2015). Together with the previous above mentioned aspects, fear of stigmatization prevented
people affected by dementia and mental illness from asking for help (Mavundla, et al., 2009;
15
Zimba Kalula, et al., 2010; Mohamed-Kaloo and Laher, 2014; Egbe, et al., 2014; Mkhonto and
Hassen, 2018).
Other implications related to discrimination and stigma were the effects suffered, such
as not being able to live a normal life and the worsening of health. In the first case, the study
in the Dr Kenneth Kaunda District found that people with mental illnesses were “home bound”
because of the fear for stigmatization. For the second case, stigmatization also lead to worse
mental health of people (Egbe, et al., 2014).
2.3 Potential for Addressing Rural-Urban Disparities in Dementia
Perception
The analysis of the existing literature around dementia and mental illness perceptions,
knowledge, and awareness in South Africa through the 9 publications presented in this study
show that there are some patterns around dementia perceptions in South Africa.
First, from the 9 publications analysed, it is clear that the lack or low dementia
knowledge and awareness is present in South Africa, both in rural and urban areas studied. One
perception around dementia is that it is a normal process of ageing (Zimba Kalula, et el., 2010;
De Jager, et al., 2017) and lack of knowledge resulted both from general public (Khonje, et al.,
2015), from family members and primary care workers (Zimba Kalula, et al., 2010). All the 9
publications mention that there is a strong need to address lack of knowledge and awareness in
the community and in the health-care workers, including geriatric care, through expert and
advanced training, campaigns, health strategies, public education and community-based care
services (Zimba Kalula, et el., 2010; De Jager, et al., 2017). In addition to these strategies, from
the results of the studies it is possible to see that it is important to include cultural and religious
explanatory models in the explanation of mental illnesses and other related conditions from
medical professionals to reduce stigma (Egbe, et al., 2014).
16
Second, from the studies analysed it is apparent that another strong perception around
dementia is represented by beliefs. These have profound implications on dementia awareness
and shape the way communities and health-care workers perceive dementia and more in general
mental illnesses (Mohamed-Kaloo and Laher, 2014; Alzheimer’s Disease International. 2019).
The main traditional belief present in the publications analysed was that dementia was
associated with witchcraft, rather than being seen as illness. Only 2 publications of the 5 related
to urban communities mention witchcraft as the principal form of cultural thought around
dementia (Khonje, et al., 2015; Mkhonto and Hanssen, 2018); on the other hand, all the 4
publications related to rural communities contain the presence of witchcraft associated to
dementia (Mavundla, et al., 2009; Benade, 2012; De Jager, et al., 2015; De Jager, et al., 2017).
Therefore, the existing literature highlights a stronger presence of traditional beliefs in rural
areas of South Africa. However, the literature does not explain why there is a rural-urban
difference in dementia perspective, why beliefs are more present in rural communities and what
are the implications.
Third, some consequences of dementia perceptions were analysed: lack of knowledge
and awareness create implications such as negative attitudes present in both rural and urban
areas toward people with dementia (shame, elderly violence, and abuse) and stigma (loss of
social interactions, isolation, discrimination) (Mavundla, et al., 2009; Egbe, et al., 2014;
Mohamed-Kaloo and Laher, 2014; De Jager, et al., 2015; Khonje, et al., 2015). Finally, the
main consequences of traditional beliefs acknowledged in the 9 publications result in stigma
and negative attitudes, which cause dementia under-diagnosis and lack of treatment, fear of
stigmatization, fear of seeking help and care and finally lower quality life and worsening of
health (Mohamed-Kaloo and Laher, 2014; Egbe, et al., 2014; De Jager, et al., 2015) (Mkhonto
and Hanssen, 2018). The literature does not go into detail about other consequences of different
dementia perceptions in rural and urban areas.
17
Currently there is no updated study that shows that perceptions around dementia are
changing other than those analysed in this study, which call for raising dementia awareness and
understanding to fight stigma. Research shows that cultural factors are a key aspect in the
knowledge of dementia, for its diagnosis and treatment (Jacobs, et al., 2019). There are yet no
comprehensive studies about rural-urban disparities in the dementia perception in South Africa.
Therefore, this study aims at understanding the rural-urban differences in dementia perceptions,
in particular analysing through the themes above:
(i)
Why rural-urban differences in dementia perceptions exist in South Africa (i.e.,
why some traditional beliefs are more likely to be present in rural areas);
(ii)
What are the implications of different perceptions in rural vis-à-vis urban areas.
I think that the potential for addressing rural-urban dementia perception disparities lies
in finding factors that can explain the difference in the numerical prevalence of dementia in
rural and urban South Africa and can improve awareness and reduce stigma. For policy makers
it is essential to understand and have a deeper cultural logic of dementia in different parts of
South Africa: dementia knowledge and awareness could be promoted in a culturally sensitive
manner to address negative traditional beliefs such as witchcraft, stigma, discrimination, and
negative attitudes towards people living with dementia. In this study, I aimed at understanding
the differences in perception and their consequences around dementia between rural and urban
communities in South Africa and explaining the role and implications of traditional beliefs.
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3. METHODS
3.1 Data Collection
Originally, I was planning to use two methods of data collection: first, an online
questionnaire to better understand in general terms dementia knowledge, beliefs, stigma and
attitudes in South Africa and because it was possible that people working or living in rural parts
of South Africa would have low internet connection, not enough for online interviews. Second,
I thought it was valuable to conduct semi-structured online individual interviews to focus on
some aspect that resulted from the questionnaire. However, the questionnaire created was
reviewed by the South African research team of STRiDE (Strenghtening responses to dementia
in developing countries), which agreed to support my research during the dissertation process:
the team emphasized the difficulties to capture the broadness of the topic and the possibility of
respondent’s misunderstandings of the questions raised.
Therefore, only semi-structured online individual interviews were used to understand
dementia perceptions in rural and urban areas of South Africa and to deepen the knowledge on
why traditional beliefs such as witchcraft are more present in rural areas vis-à-vis urban ones.
Qualitative interviews relate to “purposeful, systematic, analytic research design to answer
theoretically motivated questions” (Lamont and Swidler, 2014, p. 159) and are useful to ask
closed- and open-ended questions by creating a space for discussion where the interviewer can
bring specific themes while leaving space for the respondent to bring new ideas. They are
beneficial because the dialogue is built around the topics of the agenda in a flexible way and
can be used to find meaning of what was said in the literature. The main advantage is that the
interviewer is not the main leader in the discussion; in fact, this type of interview is used to ask
questions to understand the judgments and independent ideas of the respondent and it is
particularly useful when the topic has not been completely developed yet (Adams, 2015).
19
The relevance of this data collection method for this study appears in two ways: the
first regards the nature of these research questions and study. After having reviewed the
existing literature and analysed the three themes around dementia, the objectives of this study
are to identify the reasons why some traditional beliefs are more likely to be present in rural
areas and what are the implications. Semi-structured interviews are appropriate for
understanding perceptions, feelings, narratives, and experiences and from the discussion in the
interview, it is possible to recognize patterns, themes, and issues. The scope of the interviews
for this study is a narrow one since they allow to identify the differences in perceptions and the
purpose is to deeply tackle the topic of why dementia is seen differently in rural vis-à-vis urban
areas, in particular regarding traditional beliefs (witchcraft).
The second reason why semi-structured interviews were used in this research is related
to the fundamental characteristic of the interview itself, i.e., exploring with an open discussion
and open-ended questions the beliefs of the respondent. This research necessitates an open
conversation where important topics may arise directly from the respondent.
The sample of respondents considered for this study includes people working in
dementia organizations in South Africa or researchers. This criterion was based on the
consideration that people working in an environment dealing with dementia, from social
workers to researchers to managers of associations, are best positioned to have suitable
knowledge to provide information for the research questions. The inclusion criteria include
adults working in a dementia-related context or studying dementia in South Africa, living in
South Africa (urban or rural areas) and speaking English. Exclusion criteria are based on people
not living or working in a dementia-related area in South Africa, who do not speak English.
Out of the 50 people contacted through email or LinkedIn several times to participate in the
interview, only 6 people responded positively, and included regional managers, social workers,
social auxiliary workers, administrative assistants, and researchers. However, the sample of
20
respondents was small and not representative enough, and I needed more support from the
South African STRiDE team in terms of access to secondary data used and created by the
researchers. However, the team stated that they do not have much data for the topic analysed.
3.2 Data Analysis
The most appropriate approach for data analysis for this research is a method for
evaluating qualitative data intended to create knowledge from human expertise (Sandelowski,
2004), i.e., the thematic analysis. For this analysis, the software Nvivo was used. According to
Nowell, et al. (2017), qualitative studies involve systematic procedures to create useful results
(Nowell, et al., 2017) and the thematic analysis is an adequate method to evaluate qualitative
data sets from interviews to outline patterns and themes between data and examine how they
relate to one another. According to Braun and Clarke (2006), thematic analysis can be used
with different theoretical contexts and “works both to reflect reality, and to unpick or unravel
the surface of ‘reality’” (Braun and Clarke, 2006, pg. 9). One of the advantages of using
thematic analysis, compared to other qualitative data analysis methods, is that it provides
flexibility that might increase the presence of valuable content in the results (Braun and Clarke,
2006).
A theme is defined as a topic that indicates a meaning in the data set, which is essential
in the data for the research topic (Braun and Clarke, 2006). In this research, a sophisticated
explanation of a theme in the data was provided, such as a specific area of interest (what are
the differences and the causes of rural dementia perceptions vis-à-vis urban ones in South
Africa and what are the consequences of some traditional beliefs being more likely to be
associated to dementia in rural areas), but also hidden themes, such as the convergence of
cultural and religious factors explaining one cause of rural dementia perceptions (Braun and
Clarke, 2006).
21
The choice of analysing qualitative data from the interviews of this research was based
on the consideration that first, thematic analysis can be rigorously used for semi-structured
online individual interviews and second, it indicates meanings in the data set grouped by
themes, which are fundamental to understand the differences in rural-urban dementia
perceptions, the reasons why some traditional beliefs are more likely to be present in rural areas
and the implications.
4. RESULTS
The thematic analysis applied to the qualitative data collected from the interviews through
the software Nvivo shows three main themes that I will illustrate here below.
(1) Dementia Perceptions: rural and urban
5 participants out of 6 agreed that in South Africa dementia perceptions differ, for their
nature and characteristics, between rural and urban areas. Rural and urban perceptions,
according to the 5 respondents, were divided into categories and all these participants referred
to perceptions related to dementia in rural areas as:
-
Witchcraft;
-
Possessed by a spirit;
-
Normality, not an illness;
through sentences such as: “it being witchcraft, or somebody is possessed or that is not seen as
an illness of the brain.” (Manager 1); “There is witchcraft, possessed.” (Social Worker); “They
don’t normally say “it is a disease”” (Social Worker); “They believe that there are some spirits
22
or ancestors ruling inside of them and it is why they behave in the way they behave” (Social
Auxiliary Worker).
However, also other categories, which differ from witchcraft, were mentioned as well:
older version of people (“People when get old in rural communities, they should be an older
version of themselves”) (Manager 1); madness (“saying to them that dementia is a disease of
the brain and the person becomes forgetful, they say: no, no, this is impossible, that is
ignorance per se, that is madness”) (Social Worker); supernatural (“they link it to something
supernatural”) (Manager 2); spell on them (“There is a word in Afrikaans which explains very
well, which means that there is a spell on them”) (Manager 2).
From the thematic analysis of the interviews, the 5 participants acknowledged the
presence of urban dementia perceptions, in particular:
-
Understanding the disease (“they have an understanding that it is a disease”) (Social
Worker); “People living in city areas, quite a big number of people know about
dementia” (Professional Counsellor).
-
Normality (“If they forget things, they think it is normal”) (Social Worker); (“It is a
consequence of ageing”) (Social Auxiliary Worker).
Misconceptions and myths such as the above mentioned that come with the lack of
understanding of dementia were represented as the main current challenge in rural communities
of South Africa. Nonetheless, all 6 respondents highlighted a general difficulty in
understanding dementia or Alzheimer’s both in rural and urban areas, with extreme patterns in
rural communities in which people are unfamiliar with this condition and sometimes never
heard about it. This becomes an important issue when considering that the prevalence of
dementia is higher in rural areas due to lower quality life and lifestyle (food, housing,
medicines).
23
In addition, 1 participant stated that there is no difference in dementia perceptions between
rural and urban South Africa because generally people are not aware of what dementia is. The
interviewee raised questions about our perception of dementia beliefs of people living in South
Africa “when it comes to our perception around their perception of witchcraft” (Researcher).
The person highlighted the sensitivity of the argument and stated that people living with
dementia in rural South Africa labelled as witches are anecdotal facts.
(2) Causes of Dementia Perceptions
The second main theme is structured in three main sub-themes: (a) culture; (b) religion
and (c) lack of knowledge. The first research question of this study is related to the causes of
the difference in rural-urban dementia perceptions. From the analysis of the interviews, the
participants referred many times to three main causes: cultural, religious and knowledge.
(a) 5 interviewees highlighted that rural communities of South Africa see dementia in a
more “traditional” way: people in rural areas see their life through a “system of beliefs”
(including “cultural trouble beliefs” (Manager 1) that comes from culture and traditions
and influences how people perceive dementia. In contrast to the rural areas, in urban
areas it was recognized that there are less cultural thoughts around dementia, as
supported from the perceptions’ categories previously explained. The main reason why
in rural communities, dementia is seen as witchcraft, possession, normality, was
acknowledged to be culture. “In the rural areas the cultural thoughts are very
important, therefore the negative perceptions around dementia exist.” (Manager 1);
“Culture plays a big role in the way people perceive dementia. South Africa has
different cultures but if I’m just speaking in terms of culture per se, it plays a big role.
Because people have beliefs.” (Social Worker); “I wouldn’t say it is due to a specific
culture” (Manager 2); “It is more cultural than medical” (Professional Counsellor).
24
All the “ethos” of their life is seen through cultural beliefs and traditional healers, or
doctors are a key component as exorcism constituent: “It is common that the people go
to traditional healers for this “exorcism need” that needs to happen, because the
person is possessed” (Manager 1); “People sometimes see their traditional doctors or
“sangomas” (shaman of Zulu, Xhosa, Ndebele and Swazi cultures)” (Manager 2);
“Most people in rural areas are more likely to go to traditional healers than to medical
doctors” (Social Auxiliary Worker). Although South Africa is a multi-culturally
diverse country, this applies for all the cultures present in South Africa, according to
the respondents. In addition, only 3 of the 6 participants referred to the black culture
for having traditional thoughts around behaviours and illness, therefore this result
cannot be enough representative and needs more research: “Also if you think of the black
culture, if you have an aged person behaving very badly and strangely, then it is a huge
disgrace.” (Manager 1); “For the black community, there are a lot of misconceptions
that come with understanding Alzheimer’s. There are a lot of myths that surround the
disease. People have their own beliefs and if some of the symptoms of Alzheimer’s
happen, that’s the scariest thing ever because they believe these people are the bad and
the witches in the community.” (Social Worker); “The cultural identities are usually
stronger in the rural areas, and those cultural groups are usually black South African”
(Researcher). According to these participants, the black culture has a strong component
of magic and supernatural beliefs around behaviours that can be linked to dementia or
Alzheimer’s symptoms and the misconceptions linked to this culture are prevalent in
rural areas (“In the rural areas there are these kind of misconceptions”) (Social
Worker).
(b) Although the majority (5 people) said that culture is the most important factor
influencing dementia perceptions in South Africa, religion also plays a role, in
25
particular religious practices, according to 5 participants. In fact, churches and religious
temples are one of the main places where the elderly in the rural communities can have
social interactions and these are the areas where some misconceptions arise (“I realized
that they have this belief that this person is possessed”, Social Worker). In South
Africa, Christianity, Judaism, Islam and Hinduism represent important spiritual sources
for support and healing and each religion can have different perspectives of behaviours
and illness, such as “possessed by spirits”, “jadoo” (witchcraft), “kharma”. 2
participants mentioned a mixed presence of culture and religion in the dementia
perceptions: however, the cultural component is stronger in the sense that it is the
framework on which religion is applied and especially rural communities do not see
this culture-religion pattern as divergent: “A big amount of older people go to churches
and have religious and cultural beliefs such as: this disease cannot be affecting black
people, this is a white man disease” (Social Worker); “They talk to me as saying “we
are Christians but we are kind of black Christians. So, we adhere to the Christian
principles but through our cultural framework”, “they would pray to God but also to
ancestors as well with the traditional healer” (Manager 1).
(c) A third factor relevant to rural-urban differences in dementia perceptions is lack of
knowledge, acknowledged by all 6 participants. The main challenge that was identified
especially in rural areas of South Africa is a “pervasive ignorance” (Manager 1) about
dementia, which contributes to the creation of dementia perceptions. Currently lack of
knowledge is due not only to an unclear understanding of the disease, but also to low
understanding from health workers and general practitioners in rural areas: “In rural
areas there is a bigger lack of knowledge, and this includes family, community and
health workers.” (Manager 2). A major issue is that not all the health practitioners in
rural communities receive formal schooling; instead, they are trained with basic
26
healthcare guidance, resulting in frequent wrong or lack of diagnosis: “They say that
they saw their local general practitioner, and he said, “ah no man, it is just an old
person's disease and I have also got older and I forgot, don’t worry” (Manager 1);
“They don’t like to label dementia” (Professional Counsellor).
(3) Implications
5 participants of the study stated that the implications of dementia perceptions are worse
in rural areas of South Africa, since more cultural, religious beliefs and lack of knowledge are
associated with dementia in rural locations. Especially, the main consequences mentioned
relate to the lower focus on diagnosis and treatment due to dementia perceptions. These
respondents have mentioned that the dementia association to something supernatural, spirit or
witchcraft causes an “exorcism need” (Manager 1) done by traditional or religious healers,
instead of a condition diagnosis. Another important implication is the fear of people living with
dementia, stigma, and discrimination, which induce family members to lock, beat and abuse
people with dementia (such as “they don’t give them food”, Manager 2; “drug the people to
make them asleep because it is much better like that”, Social Worker). Some of these attitudes
were reported to be frequent also among the caregivers. The more extreme negative attitudes
toward people with dementia were said to be “in some rural areas they burn them or like kill
them” (Manager 2).
27
5. ANALYSIS AND DISCUSSION
The aim of this study was to analyse the rural-urban differences in dementia perceptions in
South Africa and find out why some traditional beliefs around dementia are more associated
with rural vis-à-vis urban areas and what are the consequences. It is already acknowledged in
the existing literature that perceptions around dementia exist in South Africa and especially
witchcraft is associated with people with dementia in rural communities; the results of this
study support this theory. However, this research adds important findings: from the thematic
analysis I demonstrate first that witchcraft is not the only cultural thought associated with
dementia in rural areas. Possession by spirits and normality are other main categories
associated with dementia in rural South Africa; the conceptions of madness, supernatural or
spell and older version of people were mentioned as part of the cultural beliefs linked to
dementia.
Second, the main factor causing rural dementia perceptions was stated to be culture. In fact,
rural communities see life with their cultural framework and beliefs are associated with
behaviours and illness; on the other hand, urban areas are not highly representative for cultural
thoughts, and this explains the dementia perceptions in urban communities, being “normal” or
understanding better the condition. The results show that there is no specific culture that links
dementia to cultural beliefs, but all cultures in rural South Africa, although two participants
mentioned that black culture has misconceptions around dementia.
Other important factors mentioned are religion and lack of knowledge. Dementia
perceptions can arise in religious environments and interestingly religion in rural communities
can be seen through the lenses of culture. Finally, rural communities, including families and
doctors, present a bigger lack of dementia knowledge, which results in under-diagnosis and
under-treatments of the disease, being the first main negative consequence of dementia
28
perceptions in rural areas. The second implication resulted to be “fear” of people living with
dementia, stigma and discrimination, which create negative attitudes toward people with
dementia (i.e. abuse, beat, kill).
The results might suggest that there is a need to consider culture, religion and lack of
knowledge as the main contributors to dementia perceptions in rural South Africa and as the
main causes of negative implications toward people living with dementia especially in rural
communities. It is recognized that globally, according to the results of the largest survey on
dementia, there is little knowledge and understanding about dementia. Attitudes towards
dementia matter and, associating a negative belief to a person with dementia, creates low
quality life and worsens the psychological wellbeing of the patients affected (Alzheimer’s
Disease International, 2019); also, perceptions about dementia affect the diagnosis and how
patients are treated and supported in the health- and social-care context.
Although there are very few studies about how dementia is perceived in South Africa, there
is an increasing interest in the literature in how culture and ethnicity might affect dementia
knowledge (Fletcher, 2020). There is an agreed understanding that ethnic minorities are less
aware of dementia as a condition, and this can explain the lack of health and social service
utilization among them (Ayalon and Arean, 2004). The main barriers found in the studies are
stigma, personal perception of people having dementia (mainly a feeling of shame) and the
belief that dementia is a normal process of life (Mukadam, et al., 2011). Recent studies
emphasized the importance of culture in the shape of the condition's awareness and for how
individuals position themselves in relation to the community (Fletcher, 2020). Based on the
studies about dementia perceptions in Nigeria, Kenya, Republic of Congo, the cultural
component of traditional beliefs increases in its importance and stigma becomes a serious
limitation (Faure-Delage, et al., 2012; Atata, 2019; Musyimi, et al., 2021). The analysis of
personal experiences and narratives demonstrate lack or low knowledge of dementia, not only
29
amongst people affected by it, but also from health professionals and the general public
(Musyimi, et al., 2021). Dementia is not perceived as a medical condition; in fact, some causes
of dementia are believed to be punishments from God and the traditional community healers
remain the main help for people with dementia (Faure-Delage, et al., 2012).
The results build on the existing evidence that in the Sub-Saharan African tradition, many
practices and beliefs include the presence of witchcraft, ancestral spirits in medicine,
agriculture, and dreams. According to the African traditions, ancestral spirits can protect or
punish peoples if traditions are violated or when behaviours deviate from those of the
community. The traditional approach to health and illness in rural parts of South Africa is based
on the community belief system that involves a holistic approach to spiritual and physical
guidance. Each illness has a cause and mental illnesses are associated with a conflict between
the person and a spirit, witch or ancestor (Ross, 2010). According to Evans-Pritchard’s thought,
these traditions are part of a cultural system of supporting values that, being diverse in the
language and traditions of each of the Sub-Saharan countries (Appiah, 1993), affect also how
people perceive dementia and other mental or neurodegenerative diseases (Alzheimer’s
Disease International, 2019). Medical anthropologists would use the term “emic explanatory
models” to show the difference in conceptual constructions of diseases and illnesses, which are
intrinsic cultural explanations of a society, and can include concepts such as supernatural
powers and witchcraft (Mavundla, et al., 2009).
In addition, a study from Mohamed-Kaloo and Laher (2014) clearly highlights how not
only culture is fundamental in the perception, recognition, and treatment of mental illnesses in
South Africa. Also religious beliefs shape the way people see mental illness: in the study
conducted in the Lenasia community (Gauteng), Muslim religious beliefs and in general Islam
prescriptions made easier the process of dealing with a mental illness condition and their
patients felt that faith reduces the prevalence of mental illness. Religious practices, for instance
30
“salaah” (ritual prayer), “zikr” (meditation) and “dua” (supplication), brought positive benefits
to the patients. Religion and culture have also a big component in the “openness” with which
patients talk to their doctors: patients are more open with general practitioners of the same
religion or culture. It was also established that spiritual illness and traditional healing exist in
the Lenasia community and are more associated with the black african culture. The main
perceptions of mental illnesses found in the study were: “jadoo” (witchcraft), “nazr” (evil eye)
and “jinn” (spirits) (Mohamed-Kaloo and Laher, 2014). Although the results of my study
suggest that awareness around dementia and mental illnesses is the main solution for
perceptions and negative implications in rural communities, the study by Mohamed-Kaloo and
Laher (2014) mentions an increased collaboration between healthcare professionals and
traditional healers as a necessity (Mohamed-Kaloo and Laher, 2014)..
The data contributes a clearer understanding of the presence of cultural and religious
thoughts around dementia in rural areas, compared to urban ones. In fact, existing literature
states that cultural and traditional thoughts are more common in indigenous and rural
communities of South Africa (Coates, et al., 2006; Ross, 2010). There are two main theories
that explain the stronger presence of traditional values in rural areas compared to urban ones:
the first theory associates the loss of traditional values in urban areas to some specific
characteristics of the urban communities, such as ethnicity, class; the second model emphasises
the nature of cities (as places characterized by density, innovation, and heterogeneous
population) with the modification of personality and structure among the urban communities.
Especially, urban areas are generally larger, and life is more segmented, characteristics that
create the loss of traditional codes and religiosity, reducing the “personality” of traditions
(Fischer, 1975). While previous studies have focused only on the cultural and religious aspects
of dementia, this study demonstrates why these aspects are more common in rural areas of
South Africa vis-à-vis urban ones.
31
These results should be taken into account when considering policies to improve the access
and the quality of healthcare in South Africa for people living with dementia. It is important to
understand and incorporate the dementia perceptions, both rural and urban, into the further
health policy steps of the country. To improve dementia diagnosis, treatment and the quality
life, it is essential, from my point of view, to first adopt a deep understanding of the cultural,
religious beliefs’ system that influences the dementia perceptions and the negative
consequences on people living with dementia. With a cultural and religious understanding of
dementia, it could be more straightforward to implement specific policies on rural and urban
communities according to their needs.
The generalizability of the findings of this study is limited first by the small number of
people interviewed, not enough to make the results found representative and accurate. The
validation of what the participants said during the interviews was unfeasible: as an example, 5
participants agreed that culture is a fundamental factor causing dementia perceptions and it is
more common in rural areas, however, only 3 people out of 6 mentioned black culture but
generally said that they could not mention a specific culture. There is no way to validate what
the participants said. I put all my efforts to contact as many people as possible for the
interviews, nonetheless, few people answered to my emails; this could be due to the period in
which I am conducting interviews and also to the particular situation South Africa is living at
the moment (in July 2021 the country was on the Level 4 (Very High Level) lockdown of
COVID-19, therefore employees worked remotely and there was a possibility that some people
did not have a stable internet connection at home). Moreover, recently South Africa has
suffered from many deadliest unrests in many provinces, creating social disorders. I waited
until the first weeks of August for possible positive answers from the 50 people contacted;
since the dissertation deadline is on the 19th of August, I unfortunately was not able to consider
any positive response from this day onward.
32
Second, the lack of previous studies on the rural-urban divergences in dementia perceptions
in South Africa was challenging during the writing process of this dissertation. I was put in
contact with the Principal Investigator of the STRiDE project, who agreed at the beginning of
February 2021 to present my research proposal to the STRiDE teams. Only in late April I
received feedback from the teams and the South African STRiDE team dealing with dementia
in the country offered its availability to support my research. In May, we agreed that the team
could give me access to secondary data and provide contacts for interviews. If on one hand the
expectation of receiving some contacts for the interviews was met, on the other, the team was
not supportive for the access to secondary data and for sharing documents, past papers, and
interviews’ transcripts, saying in August that there were not enough data, except for a document
related to the dementia situation analysis in South Africa on which they are currently working.
Moreover, the late response from the team exacerbated the difficulties, although I tried several
times to contact the Principal Investigator to understand the feedback of the teams, and the
South African team for further data. The main issues found with regards to the collaboration
with the STRiDE team were the team’s late responses, poor communication and help, that
affected the beginning period of making research for the dissertation, the number of data used
in my research and the accuracy of the results. With a faster communication and bigger amount
of secondary data from the team, the research would have been more complete and precise,
with results that could have been more representative.
Finally, another important limitation to this study is represented by the lack of standardized
definition of what constitutes “rural” and “urban” areas in South Africa, because this country
has many kinds of settlements. In this research, I referred to “urban” for the metropolitan formal
areas with large and smaller towns, and to “rural” to the homelands areas with villages and less
small towns (Atkinson, 2014).
33
Further studies need to establish on a larger scale the differences in dementia perceptions,
the causes, and the implications in all the rural and urban districts and provinces of South Africa
to better understand if the results of my study can be applied to all the South African territories.
In fact, my study focused on the rural-urban dichotomy and the 6 respondents worked in 5
provinces of South Africa (Eastern Cape, Western Cape, Gauteng, Mpumalanga, Limpopo),
therefore their knowledge around my research questions might be limited to these areas.
6. CONCLUSION
This research aimed at understanding the difference in dementia perceptions in rural vis-àvis urban areas and the reasons why beliefs are more likely to be associated with rural
communities and the following consequences. The thematic analysis from the interviews has
shown that the perceptions around dementia are more emphasized by culture, religion and lack
of knowledge in rural areas, where not only witchcraft is associated to dementia, as the
literature states, but also to possession by spirits, normality, the conceptions of madness,
supernatural powers or older version of people were. Contrarily, in urban areas dementia is
seen as normal process of ageing or as a better understanding of the disease. In conclusion, all
cultures in South Africa are the main cause of rural dementia perceptions because generally
rural communities see life and illness through their cultural lenses. In urban areas, life is not
perceived through the cultural “ethos”; that explains the dementia perceptions in urban
communities. In addition, religion is a determinant factor defining dementia perceptions,
however, it is also seen through the eyes of culture and lack of dementia knowledge from
medical staff and community is worse in rural areas. Finally, the main consequences of
dementia perceptions in rural areas are under-diagnosis and under-treatments of the disease,
34
but also “fear”, stigma, discrimination, and negative attitudes toward people with dementia (i.e.
abuse, beat, kill), worse in rural areas compared to urban ones.
Based on the conclusions, policy makers should consider the cultural and religious effect
on how dementia is seen in different areas of South Africa to better understand the implications
of perceptions and provide communities with specific policies to improve dementia treatments
and diagnosis in South Africa, together with the creation of a national dementia plan. The
understanding of the cultural and religious context in which people with dementia are living is
key to better tackle the problem and raise awareness and education in the country. Moreover, I
think that perceptions’ knowledge could modify in a positive way the traditional way of taking
care and treating people living with dementia: culture and religion could be important factors
to include in the way doctors treat the disease, as an incentive for treatment and collaboration
between medicine and traditional communities. South Africa needs to be prepared with a solid
health system that considers cultural and religious factors influencing views on illness and
behaviours to cover the needs of individuals affected by dementia in the health and social
sectors’ context; due to the need of constant and specialized care of patients, it is fundamental
to implement a support between the medical, socio-cultural, and psychological sphere of the
patient. Further research needs to determine if different types of perceptions exist in different
cultures and the causes of dementia perceptions in the whole territory of South Africa.
35
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41
Appendix 1: Interview Guide
INTERVIEW DETAILS:
Participants
Region
Date and Duration
Place
Time
Manager 1
Eastern Cape 07.07.2021
Method
of
Recruitment
18 minutes
10.00
Online
Through
(Zoom)
email
Online
Through
(Zoom)
email
Online
Through
(Zoom)
email
Online
Through
(Zoom)
email
Online
Through
(Zoom)
email
Online
Through
(Zoom)
email
GMT+2
Social Worker Limpopo
07.07.2021
30 minutes
11.30
GMT+2
Manager 2
Mpumalanga 07.07.2021
17 minutes
14.30
GMT+2
Social
Gauteng
30.07.2021
Auxiliary
16.00
Worker
GMT+2
Researcher in Western
30.07.2021
Dementia
17.00
Studies
Professional
Counsellor
Cape
18 minutes
29 minutes
GMT+2
Mpumalanga 30.07.2021
18.00
40 minutes
GMT+2
42
INTERVIEW QUESTIONNAIRE:
1. What are the main challenges in the dementia context in South Africa?
2. Where are these challenges more difficult, in rural or urban areas? Why?
3. What are the main causes of dementia for people in rural and urban areas?
4. How do you think dementia is perceived in South Africa? And in your region?
5. Are there differences in dementia perceptions between rural and urban areas?
6. Why do you think these differences exist?
7. Some publications state that some traditional beliefs such as witchcraft are more likely
to be present in rural areas. Do you agree? Why is that?
8. Are there other specific traditional beliefs associated with dementia in rural areas? And
in urban ones?
9. What are the implications of this association?
10. Is dementia knowledge/awareness a relevant factor that influences dementia
perceptions?
43
Appendix 2: Tables
Table 1: Overview of the nine publications
Author,
Year,
Country
Title
Aim
Data collection,
analysis
and
participants
Discussion/Conclusions
Zimba Kalula,
et al.
“Profile
and
Management of
Patients at a
Memory Clinic”
To evaluate the
role of the
UCT/GSH
Memory
Clinic.
305 patients were
analysed between
2003 and 2008 at
the clinic.
-Lack of dementia
awareness from family
and
primary
care
workers.
“Psychiatric
stigma
and
discrimination
in South Africa:
perspectives
from
key
stakeholders”
To
explore
psychiatric
stigma
by
service users to
reduce stigma
and
discrimination.
“Perceptions of
mental illness
among Muslim
general
practitioners in
South Africa”
To investigate
perceptions
about mental
illness in 10
individuals, 5
females,
5
males (South
African
Muslim GPs)
in the Lenasia
area,
Johannesburg
(Gauteng
Province).
Qualitative
individual
interviews
and
focus group in the
Dr
Kenneth
Kaunda
District
(KKD): 77 adults:
professional nurses
(10),
lay
counsellors (20),
auxiliary
social
workers (2); and
service users (45).
Semi-structured
interviews
were
conducted.
The
questionnaire had
37
questions
including
perceptions
of
mental
illness,
understanding of
religion
and
culture,
and
treatments
of
mental disorders.
-Stigma
and
discrimination towards
people with mental
illness are barriers to
help seeking, health care
and illness management.
-Psychiatric
stigma
from family members
and
health
care
providers.
-The main cause was
misconceptions about
mental illness.
-Culture
influences
mental
illnesses’
perception, treatment,
labelling of the condition
and recognition.
-Muslim
religious
beliefs made easier to
deal with health issues.
-Patients
open
themselves easier with
GP of the same religion
or culture.
-Spiritual illness and
healing exists and are
common in the Black
African culture.
-Patients are reluctant to
go to psychiatrists and
psychologists.
-Presence of stigma and
fear of stigmatization
prevents patients and
people from asking for
help
and
diagnosis/treatment.
-Lack of knowledge
contributes to stigma in
the community.
2010
URBAN
South Africa
O Egbe, et al.
2014
URBAN
South Africa
MohamedKaloo
and
Laher
2014
URBAN
South Africa
44
Khonje, et al.
2015
URBAN
South Africa
Mkhonto and
Hanssen
2018
URBAN
South Africa
Mavundla, et
al.
2009
RURAL
South Africa
Benade
2012
RURAL
South Africa
A.de Jager, et
al.
2015
“Knowledge,
Attitudes and
Beliefs about
Dementia in an
Urban XhosaSpeaking
Community in
South Africa”
To investigate
the relationship
between
knowledge and
attitudes,
practices for
people affected
by dementia.
Descriptive crosssectional study of
100 individuals of
Xhosa
speaking
community living
in formal and
informal housing
in the urban area of
Khayelitsha
in
2012
(Western
Cape).
“When people
with dementia
are perceived as
witches.
Consequences
for patients and
nurse education
in South
Africa”
To analyse the
link between
culture
and
dementia,
focusing on the
consequences
of the belief in
dementia
as
witchcraft.
“Caregiver
experience in
mental illness: a
perspective
from a rural
community in
South Africa”
To analyse the
main
perceptions of
mental
disorders in a
rural
community in
South Africa.
Findings
from
large international
study
complemented
with in depthqualitative
interviews
of
family members
and 7 nurses in
nursing homes in
the
city
of
Tshwane.
8 individual semistructured
interviews
with
informal
caregivers in 2006
in
Makhuduthamaga
(local municipality
in Limpopo). A
qualitative
research
design
was used.
“Support
services
for
people
suffering from
dementia in
the rural areas
of
Kwa-Zulu
Natal,
South
Africa”
To analyse the
development
of a culturally
sensitive
support service
for dementia
care
in Kwa-Zulu
Natal.
“Dementia in
rural
South
Africa:
A
pressing need
for
To explore the
prevalence of
dementia
in
rural
South
Africa.
200
individuals
from a rural black
community
in
South Africa.
-Limited
dementia
knowledge
and
understanding
might
influence in a negative
way the attitudes and
treatments
towards
patients.
-Sex and employment
resulted to have a
significant relationship
to knowledge (males
knowing more than
females and unemployed
knowing more than
employed individuals).
-Elder
abuse
was
recognized
but
underreported.
-Dementia is frequently
associated
with
witchcraft.
-People
may
be
harassed, ostracized,
beaten, stoned, burnt,
and even murdered.
-Family
caregivers'
experiences
were
negatively
conceptualized
(cultural explanations
for mental illness that are
common in this part of
South Africa).
-Social
ostracism:
humiliation and isolation
from the community and
health
care
professionals.
-Alzheimer's disease, or
any other kind of
dementia, is not yet
commonly recognized
as an illness. This is
mostly due to a lack of
dementia awareness.
-Belief in ancestral
powers and witchcraft
is widespread.
-Milder dementia is
underdiagnosed
because of:
lack of
awareness, high levels of
routinely supports and
unwillingness to report
45
View publication stats
RURAL
South Africa
epidemiological
studies”
A. de Jager, et
al.
“Dementia
Prevalence in a
Rural Region
of South Africa:
A
CrossSectional
Community
Study”
2017
RURAL
South Africa
To conduct the
first
large
dementia
prevalence
study in a low
income rural
population in
South Africa.
1,394
Xhosaspeaking
community
dwellers in the
Eastern Cape, aged
60 years old or
over of three clinic
catchment
areas
were
analysed
and
screened at home.
social difficulties to
outsiders.
-Low
dementia
awareness.
-Dementia is poorly
understood (symptoms
might be described as
witchcraft).
-Knowledge
and
awareness of dementia
is limited.
-Beliefs
surrounding
dementia (witchcraft)
are common in the
traditional culture.
Door-to-door
method using a list
of older people’s
names
and
addresses.
46