Research suggests that socio-cultural factors play an important role in the understanding of and responding to dementia, and due to the ensuing stigma, results in the social rejection and isolation of people living with dementia and their families/caregivers. African cultures, along with other developing contexts, are characterised by a strong sense of familial responsibility that tend to respond to the care of persons living with dementia as a personal or family matter, rather than seeking help from formal health-care structures (Mukadam et al., 2011).

This sense of familial responsibility is mirrored in governmental approaches to the care of the aged. For example, the White paper for Social Welfare (1997) as well as the Older Persons Act no.13, 2006 (Government Gazette, 2006) draws on principles of ubuntu, framing the care of the aged as predominantly a social and moral practice that is situated within the private space of the family. Ubuntu refers to the social nature of people and defines people as people through their relations with others and positioned within policy. It largely privatises care for the aged within the family (Sevenhuijsen et al., 2003) and thus influences the way in which health challenges faced by older persons are perceived, and responded to, within South Africa. It also influences perceptions about how the burden of care within the family is distributed and socially sanctioned as primarily the responsibility of a female family member. Currently in South Africa, the typical profile of caregivers to persons living with dementia is a middle aged, or older female, child or spouse (Gurayah, 2015; Khonje et al., 2015; Marais et al., 2006), positioning women as responsible for “large-scale social and political problems” (Sevenhuijsen et al., 2003 p.311).

There is an emerging debate about how dementia should be positioned within South Africa: as a mental illness, a chronic medical condition (i.e., brain disease), or a disability:

1. Dementia as a mental illness: Since dementia is understood elsewhere as a brain disorder that affects cognition, it is commonly viewed as a mental illness that influences the thinking, the memory, and the executive functions of the brain (Alzheimer’s society, 2015). In South Africa it is unclear where exactly dementia is situated. The only treatment guidelines for dementia in the country was published by the South African Society of Psychiatrists, guiding private sector practitioners (psychiatrists) on the pharmacological- as well as non-pharmacological responses to dementia care. Mixed understandings of where dementia is situated is also evident within the Department of Health itself, where district level officials refer to it as a mental health condition that falls under the jurisdiction of the Directorate of Mental Health, where officials at national level are recognising dementia as a non-communicable disease.
2. Dementia as a (chronic) medical condition/disease: Dementia is poorly understood in South Africa (Prince et al., 2016b), especially amongst more rural communities (Kalula & Petros, 2011; Khonje et al., 2015; Mkhonto & Hanssen, 2018) and often seen as a normal part of aging (De Jager et al., 2017; Gurayah, 2015; Kalula et al., 2010). The behaviour symptoms associated with dementia are often viewed as mental illness and not as a medical condition that manifests cognitively and behaviourally. Positioning dementia as a mental illness subjects persons living with dementia (and their families) to stigmatisation by communities and subsequently curtails their health-seeking behaviour. There is an ongoing discussion on medical aid schemes in South Africa to recognise dementia as a chronic medical condition/disease, and, therefore, include it on the prescribed minimum benefits to allow families and persons living with dementia (i.e., those who have access to medical schemes), to be covered for the high cost of care (Gruber, 2016).
3. Dementia as a cognitive disability: Persons living with dementia associated with civil society movements (i.e., Dementia Alliance International and Human Rights Consultant, Professor Peter Mittler, at the Global Disability Summit of 2018) questioning why dementia is not recognised as a cognitive disability and share the same rights as other disabled persons under the United Nations Convention on Rights of Persons with Disability (Mittler, 2018). It calls for a shift away from locating it within the mental health sphere and locating it as a cognitive disability that affects persons living with dementia (and their carers) as a long-term condition. Dementia-SA (NGO) is also working closely with the Department of Social Development to recognise dementia as a ‘hidden’ disability and shift current perceptions on dementia within the government.

References:

Alzheimer’s Association. (2015). Alzheimer’s Disease Facts and Figures. Alzheimer’s & Dementia 2015;11(3)332; Accessed at https://www.alz.org/media/documents/2015factsandfigures.pdf on 19 July 2022

De Jager, C.A., Msemburi, W., Pepper, K., & Combrinck, M. (2017). Dementia Prevalence in a Rural Region of South Africa: A Cross-Sectional Community Study. Journal of Alzheimer’s Disease, 60(3), 1087–1096. https://doi.org/10.3233/JAD-170325

Government Gazette. (2006). Older Persons Act, No.13 of 2006 (Vol. 13, Issue 1098). Available from: https://www.westerncape.gov.za/other/2012/3/older_persons_act.pdf

Gruber, J. (2017). Delivering public health insurance through private plan choice in the United States. Journal of Economic Perspectives, Vol 31 (4); p3-22.

Gurayah, T. (2015). Caregiving for people with dementia in a rural context in South Africa. South African Family Practice, 57(3), 194–197. https://doi.org/10.1080/20786190.2014.976946

Kalula, S. Z., & Petros, G. (2011). Responses to Dementia in Less Developed Countries with a focus on South Africa. Global Aging, 7(1), 31–40.

Kalula, S. Z., Ferreira, M., Thomas, K. G. F., De Villiers, L., Joska, J. A., & Geffen, L. N. (2010). Profile and management of patients at a memory clinic. South African Medical Journal, 100(7), 449. https://doi.org/10.7196/SAMJ.3384

Khonje, V., Milligan, C., Yako, Y., Mabelane, M., Borochowitz, K. E., & Jager, C. A. De. (2015). Knowledge , Attitudes and Beliefs about Dementia in an Urban Xhosa-Speaking Community in South Africa. Advances in Alzheimer’s Disease, 4, 21–36. https://doi.org/10.4236/aad.2015.42004

Marais, S., Conradie, G., & Kritzinger, A. (2006). Risk factors for elder abuse and neglect: brief descriptions of different scenarios in South Africa. International Journal of Older People Nursing, 1(3), 186–189. https://doi.org/10.1111/j.1748-3743.2006.00025.x

Mittler, P. (2018) cited at the Global Disability Summit; cited in DAI at the 2018 Global Disability Summit in London. https://www.dementiaallianceinternational.org/tag/professor-peter-mittler/ – accessed on 19 July 2022

Mkhonto, F., & Hanssen, I. (2018). When people with dementia are perceived as witches. Consequences for patients and nurse education in South Africa. Journal of Clinical Nursing, 27(1–2), e169–e176. https://doi.org/10.1111/jocn.13909

Mukadam, N., Cooper, C., & Livingston, G. (2011). A systematic review of ethnicity and pathways to care in dementia. International Journal of Geriatric Psychiatry, 26(1), 12–20. https://doi.org/10.1002/gps.2484

Prince, M., Comas-Herrera, A., Knapp, M., Guerchet, M., & Karagiannidou, M. (2016b). World Alzheimer Report 2016 Improving healthcare for people living with dementia. Coverage, Quality and costs now and in the future. In Alzheimer’s Disease International (ADI). https://doi.org/10.13140/RG.2.2.22580.04483

Sevenhuijsen, S., Bozalek, V., Gouws, A. and Minnaar-Mcdonald, M. (2003). South African social welfare policy: An analysis using the ethic of care. Critical Social Policy, 23(3), 299–321. https://doi.org/10.1177/02610183030233001