Dementia: SA's hidden disease
A local study into dementia in the urban black population has found its prevalence to be nearly three times higher than previously estimated.
The coordinator of the study, Rikus van der Poel, says dementia is known to be much higher in developing countries.
“Developed nations have pretty constant population growth,” he says.
“But the population growth of low- and middle-income countries exceeds that of Europe and North America.
“People in low- and middle-income countries are now living longer. The sector of those above 65 is growing” and the chances of developing dementia increase with age.
The pilot study, conducted by researchers at the University of the Free State and funded by Alzheimer’s South Africa, looked at a test group of 250 households in the township of Mangaung.
Elderly residents were tested and 6% of the group were identified with possible age-related dementia and are now undergoing clinical testing.
Until now there has been no purpose-built prevalence study on dementia in South Africa and Van der Poel says this may be because it is difficult to establish.
“It requires an enormous amount of translation work and the need to gain access to communities.” He says the condition is also underdiagnosed in South Africa.
“Often healthcare workers are not trained to look at these symptoms. People with dementia may present with primary healthcare needs such as diabetes or high blood pressure—even HIV or TB.
Primary healthcare facilities are under pressure and don’t look at the etymology of this disease. It is underdiagnosed because there is a lack of awareness and our system is geared to focus on primary health needs.”
Professor Malan Heyns, the chief researcher for the project, says the choice to focus on the Mangaung township was “merely a matter of convenience” as it is close to the university.
Heyns says he “wouldn’t speculate” about a link between urbanisation and dementia as many of those in Mangaung had migrated from rural areas: “I believe that what we will find in the urban areas we will find in rural ones, too.”
But the study’s focus on the black population was reactive: “There is an assumption that Alzheimer’s and dementia is perhaps linked to European ethnicity and not prevalent in black communities. That is not true,” Van der Poel says.
Dr Gabaza Ngobeni, the founder and director of Dr Gabaza Healing Centre in Soweto, affirms that there is a belief that Alzheimer’s disease mainly affects whites.
“The truth, however, might be that dementia is just severely under-diagnosed and dementia-related symptoms are ascribed to common causes, such as ‘the elderly are like that’ or witchcraft,” she says.
Ngobeni says some black communities may accept dementia as a normal part of ageing and don’t use medical medical terms to describe the condition.
“Behaviour that most health professionals would recognise as symptoms of psychiatric illness (wandering, forgetfulness, hallucinations, repetitive speech) are considered a normal part of ageing. Relatively little has been done in this regard in Africa and knowledge about the prevalence of dementia among the black population is scarce,” she says.
Urbanisation, Ngobeni says, could play a role in the increase of this condition simply because of growing awareness: it is “most likely due to the increase in information available to our communities, as well as the increased awareness and education on Alzheimer’s”.
At Dr Gabaza Healing Centre, community leaders, caregivers and church pastors are included in community programmes to educate the black community about Alzheimer’s.
“Dementia is a problem for the family, but a problem better handled by the community. The closely knit community and the community that is informed provide an almost spontaneous network of care-giving.”
Karen Borochowitz, the director of Dementia SA, says the only way to change thinking about dementia is through education and awareness. “People are reluctant to seek a diagnosis or attend to any ailment when it appears it could be related to a mental illness.”
The elderly are a fast growing population group in South Africa and there is huge fear of being diagnosed with dementia. “It is related to their loss of self and is a very valid fear on the part of the person being diagnosed as well as the spouse and family,” says Borochowitz.
“South Africa does not have a social conscience about ageing or the elderly. There is no willingness to make the elderly a priority. “Medical aids,” Borochowi tz says, “have fattened themselves up on all the years of contribution of our elderly who are now at risk of developing dementia,” but most do not cover Alzheimer’s or any other dementia.
Heyns believes later studies will reflect the findings of the pilot study: “I imagine it is a good estimate.” But, to go forward, the project would need “a substantial amount of money”.
The model used in the study requires substantial resources and dedicated fieldworkers. Heyns says that will make it difficult to repeat the study at different centres across the country.
Van der Poel emphasises that the findings are preliminary, but says there is an essential point to such a study: “You can’t lobby government or create awareness without a prevalence figure.”
The research group hopes to secure funding for a larger test group of 2 000 households to continue the project next year.