A vision to recall Ubuntu for a more compassionate approach to dementia in South Africa by Lebo Molete

Lebo Molete is an Atlantic Fellow for Health Equity in South Africa, who leads program development and policy advocacy interventions. He is a committed advocate for finding public health outcomes that are fairer and more inclusive.

Dementia is a term used for a group of progressive and degenerative brain conditions that affect the brain’s ability to maintain optimal memory, process thinking and regulate behaviour. It can lead to an impaired ability to perform daily and routine activities. The most significant risk factor for dementia is ageing, and studies show that the elderly population in South Africa is likely to double by 2050. There are no national epidemiological studies and official statistics in South Africa by which to determine the incidence and prevalence rates of dementia. The scale of dementia remains unknown in South Africa, hence the lack of a national dementia plan that could establish goals to prevent future dementia, treat current cases and better meet the needs of many South Africans affected by this disease.

One of the main factors for the apparent indifference and misconceptions around dementia in African communities is a lack of health education. A large section of the Black community is not aware of the symptoms, diagnosis, prognosis and management. This means many do not recognize some of the early signs of dementia, which means the population is not taking preventative action and there is a reduced chance of early diagnosis. Consequently, this lack of health education and late diagnosis at advanced stages often result in suboptimal care for people living with dementia.

Many African communities who have experienced dementia have tended to attribute it to witchcraft or other inexplicable spiritual forces. For this reason, they believe that dementia can be cured through supernatural interventions. A significant number of African families of people living with dementia first consult African traditional and spiritual healers, a tendency that often leads to a delay in seeking allopathic care (whereby medical doctors and other healthcare professionals, such as nurses, pharmacists, and therapists treat symptoms and diseases use drugs, radiation, or surgery). These beliefs about witches or enemies causing the disease can further perpetuate misconceptions and cultural stigma around dementia.  

Such stigma around dementia can lead to people living with dementia and their associates being shunned. Many Africans are afraid of developing dementia themselves and they have apprehensions of caring for a loved one who lives with the disease. This fear often results in a lack of empathy and support for those living with dementia. It is characterised by a lack of communication as families and communities are reluctant to acknowledge the realities of dementia and to talk about the disease openly. Families who care for people living with dementia tend to keep their loved ones separated and isolated from society, because of imagined ideas of safety.

Dementia is an enigma on many fronts in South Africa. The predominance of a western conception of dementia means that there is a need to re-conceptualise and name dementia in African languages so that it is accepted and embraced culturally as a common brain condition that affects all humanity. Consequently, an effective social antidote to mitigate dementia is to launch culturally relevant national education and awareness campaigns. Targeted groups should include families, communities, healthcare professionals and community workers. Education and awareness campaigns must also tackle the many unfounded traditional beliefs and fears about dementia, to create dementia-friendly communities. By increasing awareness and reducing cultural stigma, more ostracised families may feel empowered to access the health care afforded to them by the constitution and the compassion of African culture.

Furthermore, it is important to integrate allopathic medicine and (k)new solutions that exist in African cultures and communities, in order to debunk prevalent myths and a cultural stigma around dementia in Africa. (K)new solutions is a notion that was conceptualised by the Atlantic Institute. It refers to known (old) ways of being and social interventions used anew to catalyse communities. Modern medicine and k(new) solutions offer a holistic and effective combination to treat many human conditions, i.e. the biological, social, emotional, spiritual and cultural aspects of people living with dementia. Studies indicate that dementia patients who have used prescriptions of non-pharmaceutical interventions from their clinical practitioners showed marked improvements in their quality of life. Some of the (k)new non-pharmaceutical interventions include regular cognitive stimulation through games, quizzes, dance, drumming; reminiscing through storytelling, pictures, revisiting familiar environments to aid recall abilities and validation, all of which provide empathy, with the individual feeling that they are being listened to and valued.

All these (k)new solutions are steeped in Ubuntu and are best delivered in a community setting. Ubuntu is an African philosophy which refers to interdependence and interconnectedness among people, and promotes collaboration to achieve common good. Ubuntu places a relational mandate on the healthy to support ailing members of the community for common social good. As a cultural practice, Ubuntu advocates for humaneness based on notions of care, compassion and empathy. An age-old African proverb states that ‘’when a small toe is hurting, the whole body swoops down to attend to it”. It is an appeal for solidarity with the infirm.

Therefore, it is crucial for African dementia advocates to identify, revitalise and use the African social capital of Ubuntu to mitigate dementia in South Africa and the entire continent. Dementia interventions demand collective leadership and collaborative social strategies that integrate western and African wellness systems for greater impact. They require Africans to intentionally embrace Ubuntu, so as to re-integrate marginalised persons who live with dementia into African communities.