As South Africans living with HIV live longer on treatment, many are now facing a new and frightening reality: memory loss, confusion and behavioural changes that families often mistake for witchcraft, but which are symptoms of a rising wave of HIV-linked dementia.
According to DementiaSA, one in three people living with HIV will experience HIV-associated neurocognitive disorders (HAND), a spectrum of cognitive, motor and behavioural impairments ranging from mild, asymptomatic challenges to severe, life-altering dementia.
Despite its prevalence, HAND remains poorly diagnosed, under-discussed and largely invisible in primary healthcare settings, especially in rural and low-income communities, where stigma, limited mental-health services and under-resourced clinics compound the burden.
Zonwabele Tshayana, founder of the Mind and Soul Foundation, said South Africa urgently needs to confront the “hidden yet debilitating” neurological and mental-health complications linked to HIV.
“The virus itself does sometimes attack the nervous system and the brain. This can lead to HIV-associated dementia or encephalopathy, which presents with cognitive impairment, motor dysfunction and behavioural and psychiatric changes,” said Tshayana, who has been living with HIV for 25 years.
South Africa carries the world’s largest HIV burden, with about 8-million people living with the virus and roughly 6-million on antiretroviral therapy (ART). Yet the country is only beginning to grapple with the consequences of ageing with HIV, prolonged treatment exposure and the long-term cognitive effects that come with it.
‘Communities call it witchcraft’
Tshayana said persistent myths around dementia mean that many people living with the condition are mislabelled or mistreated.
“Most communities still believe they are practising witchcraft or that they ‘fell out of a flying broom at night’. Their incoherent speech doesn’t help the stigma,” he said.
The bigger crisis, he added, is the lack of information, the severe shortage of specialised dementia care facilities and the pressure on mental-health institutions, many of which are full and prioritise patients deemed psychotic or dangerous.
HIV-induced psychosis: a growing concern
Tshayana said HIV-induced psychosis affects an estimated 4% to 15% of people living with the virus.
Most communities still believe they are practising witchcraft or that they ‘fell out of a flying broom at night’. Their incoherent speech doesn’t help the stigma.
— Zonwabele Tshayana, Mind and Soul Foundation founder
“Its causes can be linked to HIV-associated neurocognitive disorder, delirium, ARVs and other underlying medical conditions,” he said.
Symptoms include delusions, hallucinations, cognitive impairment, mood disturbances and unusual or bizarre behaviour, all conditions that often present in primary healthcare clinics where mental-health expertise is limited.
Dementia is widely underdiagnosed in SA
Prof Kathleen Kahn, a public health expert and senior scientist at the Wits School of Public Health, said dementia remains substantially underdiagnosed in South Africa.
“Estimates vary widely because there has been no standardised or validated approach across studies, especially in local languages,” she said.
The HAALSI-HCAP sub-study, part of the long-running Health and Ageing in Africa research platform, is introducing a harmonised battery of 29 assessments, including two newly developed cognitive tests adapted for local contexts.
Kahn said in Agincourt, HIV is studied as part of a broader web of factors shaping ageing and cognition.
“The HAALSI platform tracks how HIV interacts with cardiometabolic disease, depression, education and economic conditions to shape cognitive trajectories. By following thousands of older adults over time, and adding innovations like neuroimaging and blood assays, researchers can map how brain health changes across the life course,” Kahn said.
One early insight is the protective role of formal education in slowing cognitive decline, a significant finding in communities where older adults often had limited schooling.
Early interventions urgently needed
Kahn said emerging evidence from Agincourt highlights key priorities for the health system:
- Primary healthcare must systematically identify and manage hypertension, diabetes and other vascular risks, alongside screening for hearing and vision loss, all of which influence cognitive ageing.
- Context-sensitive dementia testing, such as the HAALSI-HCAP tools, should be rolled out nationally to ensure early detection and consistent monitoring.
- Caregivers need structured support, including training and practical assistance, as they remain the backbone of dementia care in rural South Africa.
As the country’s HIV-positive population grows older, many having lived with the virus for decades, experts warn that unaddressed cognitive decline will become one of South Africa’s most pressing, yet least visible, public-health challenges.
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