05.04. Describe the cultural/societal perceptions of dementia | South Africa
05.04. Describe the cultural/societal perceptions of dementia | South Africa
14 Aug 2022
Very few studies in South Africa directly deal with cultural/societal perceptions of dementia; however, there is agreement that dementia is largely viewed as a normal part of aging (De Jager et al., 2017; Gurayah, 2015; Kalula et al., 2010). Research in South Africa tends to agree that awareness of dementia as a medical condition is poor (De Jager et al., 2017; Kalula & Petros, 2011; Mkhonto & Hanssen, 2018; Prince et al., 2007; Ramlall et al., 2013). Persons living with dementia as well as their caregivers/families are often stigmatised and prone to experience social rejection or isolation (Gurayah, 2015; Marais et al., 2006; Mkhonto & Hanssen, 2018; Pretorius et al., 2009).
A small study (N=100) in Khayelitsha examined the knowledge, attitudes, and beliefs about dementia among this urban isiXhosa speaking community in the Western Cape Province and found that only 10% of participants reportedly knew what dementia was (Khonje et al., 2015). Other perceptions of dementia included believing that it is a punishment from God (14%) or from the ancestors (18%), that it is a curse or due to witchcraft (28%), and that traditional healers can cure dementia (15%) (Khonje et al., 2015). In South Africa, there are reports supporting the belief that the origin of misfortune is social and that in certain African cultures, ‘witchcraft’ is responsible for the cause of tragedies, accidents, loss or destruction of property, illness, unexpected death, infertility, social disputes as well as drastic weather conditions (Goloova-Mutebi, 2005 as in Mkhonto & Hanssen, 2018). The labelling of persons as ‘witches’ in South Africa is gendered, often leaving women from lower social status in communities stigmatised and shunned (Mkhonto & Hanssen, 2018). Particularly older women that live alone, or widowed, that are of darker complexions are reportedly at risk of being labelled as ‘witch’ as they are seen as possessing the power to “blend into the night to do their evil deeds” (Benade, 2012, p.275).
Although some research (Benade, 2012; De Jager et al., 2015; Khonje et al., 2015; Law, 2012; Mkhonto & Hanssen, 2018) as well as media and other reports (GADAA, 2017; Health24, 2018a; SAPRA, 2014) refer to the ‘tendency’ of witchcraft allegations to result in violence and even homicide of older persons (especially older women) (Crime et al., 2018), the study in Khayelitsha found that, despite 19% of participants indicating that they know of persons living with dementia who had been abused, none of the motivations for this abuse was reportedly related to allegations of witchcraft (Khonje et al., 2015). Further research is needed to determine the extent to which these socio-cultural beliefs are placing older persons at risk of isolation, violence, and abuse.
A recent study (Mkhonto & Hanssen, 2018) explored the link between cultural beliefs and dementia care, interviewing family members and nurses caring for persons living with dementia in nursing homes in Tswhane, South Africa. They found that the participants (N=7) believed that the behavioural and psychosocial symptoms associated with dementia are viewed with suspicion and fear by certain communities, resulting in these persons living with dementia being labelled as a ‘witch’ or ‘bewitched’, socially rejected and isolated, subsequently stigmatised and reportedly vulnerable to violent attacks from the community. These perceptions prevent persons living with dementia and their families from seeking care and treatment as well as psychosocial support (Mkhonto & Hanssen, 2018).
A lack of understanding of dementia has negative consequences for both persons living with dementia and their families, as well as influencing their care (Mkhonto & Hanssen, 2018). The belief of especially female persons with dementia as ‘witches’ within certain communities are identified as an important consideration when understanding the effects of stigma in South Africa. However, further evidence is needed to show the extent to which this is a problem.
References:
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