“One of the things that helped me was the ‘pineapple flan’ strategy,” Joburg sculptor and photographer Sandy Maytham-Bailey writes of adapting to her mother’s gradual cognitive decline with dementia.
“Instead of announcing my arrival with loud greetings and inquiries about how she was doing, I’d casually put my bag down, catch her eye, and mention that I was just there to check on her pineapple flan. This made our visits more personal and comfortable. It became a shared moment that linked us to something familiar, sparing her the stress of having to navigate a typical conversation.”
Maytham-Bailey shares her insights on the disease and its positive interplay with the arts in the journal SA Psychiatry this month. Families navigating dementia often battle with denial and resistance to losing cherished memories and “that fear is amplified for the person grappling with the disease”, she says.
Dementia South Africa social worker Phazisa Mbilini said people caring for loved ones with dementia need to find new ways to communicate and connect with them. Misunderstandings and confusion can trigger agitation and aggression.
She said: “I educate people that dementia is a disease which leads to the death of brain cells and when this happens people may repeat themselves and they show odd behaviours. It is important to understand where they are coming from,” she said.
Dementia is an umbrella term to describe a decline in mental ability severe enough to interfere with daily life — symptoms include impaired memory, reasoning, thinking and difficulty performing daily activities, usually in older people. Alzheimer’s is a degenerative brain disease that is caused by complex brain changes following cell damage. It is the major cause of dementia, and vascular dementia is another
— DEMENTIA
UCT professor John Joska, head of neuropsychiatry and the HIV Mental Health Research Unit, said that dementia can develop for some years before the symptoms appear. “Cognitive impairment and behaviour disturbances are the tip of the iceberg. Most people slowly dement and are unaware they have the disease.”
Behaviour changes — specifically apathy, lack of impulse control, socially inappropriate conduct, changes in mood and anxiety, and abnormal thoughts — may be early warning signs of dementia in people older than 50, according to Canadian researcher Danielle Vellone. However, memory problems are what most people notice.
“It’s about constant, living loss. Raw loss,” says Karen Borochowitz, founder of Dementia South Africa, which helps to fight the stigma and discrimination associated with the disease through education and to support those affected.
“My mother was 62 when she was diagnosed and there is a lot of stigma around dementia, particularly against a young person with dementia,” said the 62-year-old activist, busy in her lounge sewing outfits for a new grandson.
“I would explain to my children when they were young that granny’s mind was sometimes like a cloudy day, not a blue sky. When it was cloudy, she could not always find the words to describe how she was feeling,” she says — urging people to be kind and gentle to those affected and reach out to them through touch.
The number of people living with dementia worldwide is expected to triple by 2050, from about 50-million to 152-million, according to the Lancet dementia commission — rising the most in low- and middle-income countries like South Africa.
About 325,000 South Africans older than 60 are currently living with dementia, researchers estimated through a survey of 1,000 people in the rural Eastern Cape. The 2017 study found that about 10% of people with an average age of 70 were living with dementia.
The link between HIV and cognitive disorder among people on ARV treatment has been overstated in scientific literature claiming that 45% were affected by dementia, says Sam Nightingale, associate professor of neurology at the UCT Neuroscience Institute and a Race Against Dementia fellow.
He is the author of a new study, soon to be published in Lancet HIV, showing this is not true. Instead, it found that socioeconomic and cultural factors have skewed the results of tests used to screen for dementia.
“The CONNECT study showed that, with the latest antiretroviral treatment, cognition in people with HIV is similar to their HIV-negative neighbours.
“Most dementia screening tools were designed in high-income settings, and may not work well in populations with different cultures, languages and life experiences. If we don’t take these factors into account we end up seeing the effect of social stressors and educational disadvantage, rather than identifying people with dementia.”
The study carried out research on adults 18 to 65 (mean age 40) in Cape Town, 65% of whom were living with HIV.
“We found that the most important contributors to cognitive performance were socioeconomic factors, for example living in a shack or being brought up without basic amenities like running water and a flush toilet.
“These factors were more common in people with HIV. Hence, if we rely on cognitive testing alone it can give the impression that people with HIV have lower cognition and that HIV is damaging their brain despite treatment, but in reality it represents the failure to consider these real-life factors in diverse populations,” Nightingale said.
Most dementia screening tools were designed in high-income settings, and may not work well in populations with different cultures, languages and life experiences
— Sam Nightingale
“This is important as overestimating the prevalence of cognitive problems could compound stigma and discrimination towards people with HIV, an already marginalised group.”
Experimental drugs — known as monoclonal antibodies for Alzheimer’s — that reportedly delay disease progression in some patients with early symptomatic Alzheimer’s, offer hope of breakthroughs on the horizon. But they are expensive, with potentially severe side effects on the brain, and have not yet been widely approved by international regulators.
Nightingale said: “Monoclonal antibodies are not a magic bullet, but it is the first time that drugs have impacted disease progression so this is exciting for researchers and patients with dementia.”
Pharmaceutical companies released clinical trial data that showed these drugs, trialed on people with early Alzheimer’s, delayed cognitive and functional decline by around a third over 18 months.
The monoclonal antibody drugs remove amyloid proteins from the brain. This is clear from the results, but clinicians are questioning how much the data matches patient experience, while their safety is still being reviewed by regulators.
Amyloid proteins are found in the brains of people with dementia, but some people with amyloid proteins in the brain never develop dementia.
Dr Eloise van der Merwe, a senior lecturer in molecular and cell biology, said: “People react differently to the drugs and for some the risks will outweigh the benefits. [They] have side effects, like brain bleeds or swelling, which require constant scans for those who are getting infusions. Most of the population could not afford it.”
She said the new drugs were “not a cure” but she was pleased to see some progress.
Scientific teams at Wits University and UCT are at the forefront of research to better understand the causes of dementia and how to treat it.
A former cancer researcher, Van der Merwe is leading a multidisciplinary team to discover the processes that cause the cells in the brain to dysregulate with dementia. She said: “A lot of research is focused on the amyloid protein build-up but we are not looking at one component. We want to look at the processes in the brain that are not working properly and how to fix (them).”
Van der Merwe said they have so far identified “a protein in the brain that regulates many processes such as inflammation and metabolism” and they are looking at models on how to influence this so there is no inflammation.
“Inflammation is a big problem for disease,” she said. “We want to attack [dementia] at an earlier age from multiple angles and find something more effective than targeting amyloid plaques.”
A new Ingqondo study, led by Nightingale from the UCT Neuroscience Institute, will research how inflammation contributes to dementia. It will tomorrow start recruiting 250 volunteers of a similar background over the age of 70. Half of the participants will be living with HIV and half not.
He is exploring whether inflammation in the brain causes amyloid build-up and “examining older people with HIV will provide a unique opportunity to test this theory”.
HIV can cause chronic inflammation in the brain and it is unknown whether this increases the risk of Alzheimer’s disease.
Meanwhile, the DROP study in peri-urban Cape Town, led by Joska, has recruited about 50 participants to collect data on how to design interventions for older people with dementia and HIV in the local context.
Joska said about 90% of dementia research was done in the global north and more needed to be done in South Africa. They were applying for funding to work on “potentially modifiable risk factors” in preventing dementia.
Up to 40% of dementias could be prevented or delayed by tackling 12 modifiable risks, the 2020 Lancet Commission report on "Dementia prevention, intervention and care" found.
The researchers added three more risk factors to the existing nine modifiable factors: excessive alcohol consumption (more than 21 units per week), head injury and air pollution. Less education, hypertension, hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, and infrequent social contact were the existing factors.
Mbilini educates communities, organisations and care givers about the disease and the myths surrounding it. She said: “In some black cultures, dementia is not seen as a disease, especially if there are women living with dementia. When a women is talking about people in the past, especially if they are dead, people believe she has been exposed to witchcraft. They are afraid and nobody comes around, and these misunderstandings can lead to gender-based violence,” she said.
South Africa has an Older Persons Act which offers some protection to people with dementia but it does not yet have a national plan. “There are no national dementia plans in Africa but they are in development in Egypt, Ethiopia, Ghana, Kenya, and Mauritius,” said Alzheimer’s Disease International board member, Dr Ameenah Sorefan from Mauritius. About 60% of the world’s population with dementia live in low- and middle-income countries and this is expected to rise to 70% by 2050, she said.
Borochowitz encouraged everyone to treat people with dementia with respect: “The first response is take away [freedoms], to say: ‘You can’t do this or go there’. But instead we can find ways to make instructions simpler and to move at a different pace. Music and dance were the cornerstone of my mother’s living positively with dementia,” she recalled.
Art, dance and music soar through Maytham-Bailey’s essay on how to live creatively with dementia and how to connect. She writes: “Reflecting on [a precious and rare connection with Margaret], I’ve come to understand that dementia is like a causeway — if you embrace it there is a beautiful journey ahead, or you can avoid it and cause undue stress to everyone.”
• For help go to the Dementia South Africa website or call 076 470 5511.
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