The harm dementia causes to individual quality of life is clear: from personal distress to family burden to the loss of vital income. On a national scale, a dementia explosion in lower-income countries could derail development, with reduced productivity, further pressure on health resources and a heavy social impact.

But the population demographic in much of the Global South is young. In Kenya, for example, half of the population is under 20. And from immunotherapy to stem cell work, there’s lots of research underway on how to prevent and cure the diseases that cause dementia. By 2050, when 60 percent of the world’s people over 60 will be in Africa, will dementia still be a development issue?

Definitely, according to the Aga Khan University’s Brain and Mind Institute (BMI).

Current research and practice won’t help the Global South

Professor Zul Merali, founder of the BMI, says that 98 percent of the data on dementia is from North America and Europe. But the causes, diagnosis and consequences of dementia can vary across regions, particularly within the Global South.

For example, Western scientists are developing treatments based on the APOE4 gene, known to be a risk factor for Alzheimer's disease. But in Africa, with a more diverse genetic pool, this gene is not as strongly linked with dementia. To be useful in the Global South, treatments must take into account the variability of both genetics and the human environment.

In the US, people are told to reduce their risk through exercise. But in countries where AKDN works, physical work is standard. Diabetes and high blood pressure are more likely, and other risks might include childhood neglect, trauma or dietary deprivations.

Current “gold standard” diagnosis tools aren’t equally useful everywhere. Checking if someone can draw a clock face is irrelevant in rural Kenya, where older people might not have seen an analogue clock – or attended school and learned to use paper and pencil.

Western public awareness campaigns are aimed at a very different culture. In the Global South, there are even greater consequences for the families of people with dementia. Without specialised nursing homes, the burden of care typically falls on female relatives. Already on a small income, the caregiver may need to buy equipment such as a wheelchair or bed with high sides. But as the illness progresses, it becomes impossible for the caregiver to stay employed. Facing greater poverty and stigma, the family may also be ostracised by the community, suspicious of the affected individual being “possessed by evil spirits”. The BMI is working with several community groups to provide relevant public information.

Research that works for Africa

Now in its fourth year of research, innovation and education in brain health, the small BMI team aims to develop dementia tools relevant to Africa. It has created culturally-sensitive diagnostic tests, and is working on blood tests, similar to glucose checks for diabetes, that can indicate if someone is at risk.

As treatments to date are not yet adequate, have side effects such as brain haemorrhages and are unaffordable by most Africans, the BMI is focusing on preventing future cases while the population is still young. Just as reducing smoking lowers the risk of cardiovascular disease, some dementia risks are avoidable – and managing them could prevent or delay nearly half of dementia cases.

In one study, the BMI is exploring brain resiliency. What factors make some people cope better than others when receiving stressful news such as a cancer diagnosis?

In another, the BMI and the Davos Alzheimer’s Collaborative (DAC) are gathering data on the mental and physical well-being, education level and economic security within a cohort of 100,000 people in Kilifi, Kenya. This “Living Lab” even covers climate indicators, as participants frequently say that climate change has greatly impacted their lives. The BMI can then conduct micro-trials to rapidly test interventions. It is currently looking for funding to bring portable imaging to these rural communities.

It will soon be leading the UK Medical Research Council-funded FINGERS study in Africa. With study sites in Kenya and Nigeria, it covers 12 other African countries. The first of its kind in sub-Saharan Africa, it works with communities to identify risk factors for cognitive impairment and see how to modify them in culturally-appropriate, sustainable ways.

Research participants, healthcare staff and government officials are always part of the conversation, from the first interactions with anthropologists to explore their perceptions, to their recommendations for topics of focus.

Leading global change

With increasing funding, research in lower-income countries is becoming internationally influential. “In the Global North, they're spending relatively little effort on prevention. We could be leading that paradigm shift here, figuring out how we can prevent dementia and build resilience in individuals,” says Zul.

“Lack of resources can be the mother of innovation. In Zimbabwe, my colleague Dixon Chibanda knew that a handful of psychiatrists could not meet the country’s needs. He came up with the idea of training grandmothers to listen to and support younger people (grandma benches). This idea has now been taken up globally; there are friendship benches even in New York.”

Operating in countries without comprehensive medical care, the BMI has already trialled a shift from physicians to community-level delivery, in the field of mental health. During the 2022 Pakistan floods, it trained Lady Health Workers in Sindh to screen for mental health issues and offer low-level cognitive therapy support during their standard visits. A year later, participants’ levels of depression and anxiety had fallen by 60-70 percent.

Nature, one of the world’s most-read scientific journals, DAC and the BMI recently co-hosted a dementia conference in Nairobi – Nature’s first conference in Africa. Researchers, policymakers and healthcare professionals from the continent and around the world discussed the challenges and opportunities, the need for African brain imaging and genetic study data, and plans for partnerships to shape the future of dementia care.

“By acting now, especially in Africa where the population is young, we have the opportunity to avert the Alzheimer’s pandemic,” concludes Zul.