I was the only journalist to attend an event to mark World Alzheimer’s Day this week at the not-for-profit organization, Ikamva Labantu, in Khayelitsha. There are many dramatic breaking news stories in South Africa – Eskom’s failure to provide power, Jacob Zuma’s endless court cases, political shenanigans and corruption scandals….The plight of the elderly, particularly those afflicted by dementia, is relegated to the news version of the back-of-beyond. No headlines here.
It was a small gathering, attended by members of Ikamva Labantu’s Seniors Clubs at their Enkululekweni Wellness Centre, as well as some care-givers who wanted to find out more about dementia. Two of these care-givers shared their personal stories at the meeting. They both spoke in Xhosa, so I relied on short translations to get the jist of their experiences.
Members of the Ikamva Labantu Seniors Club meet on World Alzheimer’s Day at Ikamva Labantu in Khayelitsha, 21 September 2022.
Geraldine Philips spoke about looking after her elderly mother. Acting out her domestic anecdotes and mimicking her mother’s voice in a high falsetto which set the audience giggling, she described how her patient was constantly hungry, demanding all sorts of good food that was often beyond the budget. She spoke about how she was challenged by her mother’s incontinence, and the difficulty of reasoning with her. She also spoke of how her mother had moments of clarity where she thanked her profoundly for how she was caring for her.
South Africa needs to start talking about dementia - it’s personal, it’s painful, it’s important. Vuso Madubela spoke to the group about how she cares for her husband.
Vuso Madubela spoke about looking after her husband who had experienced a severe stroke at 70 years old, and as a result had become confused and sometimes irrationally angry. She said that bathing him had become a complex experience involving the whole family. She described the experience of caring for him as “bitter-sweet” because there was a lot of hilarity in his escapades, but at the same time it was very sad.
I felt I could relate directly to both of their experiences through my long caring campaign for my father. I felt a sense of solidarity on an emotional level. I was there partly as a journalist but partly motivated by my deepening personal interest in dementia in South Africa, and the questions I have about why such a significant disease is being relegated to the sidelines. If I find looking after my father challenging, with all the resources I have at my disposal, how are other people in South Africa coping, particularly those with scant or no means to start with? What I heard at this event was that the overburdened public health sector could not meet this need.
One of the guests, Professor Marguerite Schneider from the Alan J Flisher Centre for Public Mental Health at the University of Cape Town, presented the results of research done on dementia in South Africa. This was the first time I have heard clear answers to my big picture questions about the national situation. The research was conducted under the auspices of a larger project called STRIDE, in collaboration with parallel research groups in six other middle-income countries: Brazil, India, Indonesia, Kenya, Jamaica and Mexico. STRIDE is led by the London School of Economics and Political Science, and it stands for Strengthening Responses to Dementia in Developing Countries.
Professor Marguerite Schneider from the Alan J.Flisher Centre for Public Mental Health at the UCT centre, flanked by Lulama Sigasana, Head of the Seniors Programme on the left and Occupational Therapist Siphokazi Sompeta from Ikamva Labantu on her right-hand side.
In an online introduction to the research, the Centre for Public Mental Health, says that by 2050, about 90 million of the 131 million people who are expected to have dementia globally will be living in low-and middle-income countries, like South Africa.
“Provision of care and support for people living with dementia, particularly at later stages of the condition, can be socially and economically very costly. These costs are mostly borne by family members, particularly women and girls, putting their potential for education and/or earnings at risk,” says the website. Here is a link if you would like to read further: http://www.cpmh.org.za/research-2/stride/
“If we look at policies in South Africa, there is no policy on dementia,” said Professor Schneider. “We have policies on child nutrition, we have policies on HIV, we have policies on maternal health, we have policies on mental health, but there’s no policy on dementia. And that makes it very difficult for the government to plan and to budget for services for people who are living with dementia. So the lack of policy makes it difficult to really provide services.”
While there are facilities for the elderly with dementia in the private sector in South Africa, often commanding high prices, the public sector falls woefully short. Professor Schneider said there were only eight residential state facilities across the country that might take in an elderly person with dementia, and even they were not designed specifically for people with dementia. The majority of people living with dementia thus live at home, unsupported and unfunded, dependent on family and friends who may not even fully understand what dementia is, nor how to care for a person affected by it.
Under STRIDE, researchers did a household survey last year on two sites, one near Cape Town and one outside Polokwane, in Limpopo. They visited 408 households where they interviewed an older person over 65 years and a younger person over 18 years old in a household in a bid to evaluate the extent of dementia and the burden on care-givers. What they found was a dementia prevalence of about 14,5 per cent for the sample, and when they crunched the numbers to extract a national estimate, they extrapolated a dementia prevalence of 12,5 per cent for South Africa, which is much higher than the global estimates for Sub-Saharan Africa of two to four per cent. The problem, it seems, is far worse than imagined or forecast.
In many instances, it appears that dementia is not diagnosed within the health sector, while other diseases like hypertension, diabetes, heart trouble and stroke are.
“Health professionals are not aware of dementia. They think it is just normal ageing. And so they don’t think you can do anything about it, which is a lack of awareness,” said Professor Schneider.
The STRIDE research also took note of the role of the care-givers for the 56 people they had identified as having dementia (of which only one was medically diagnosed) in their survey last year. Over 40 per cent of the people living with dementia had a single carer – and in nearly half of all cases the care-giver was either a son or a daughter. Sixteen per cent were cared for by a spouse, and the rest by relatives. Most of the care happened within a family network, with between 1-2 carers doing the bulk of the work per person. Most of the carers were women.
The researchers asked the care-givers if they had ever felt they were at risk of possibly abusing or neglecting the elder person in their charge. Just over fifty per cent said they might be.
“I think that tells us how difficult it is to be a carer. Especially if you are an unsupported carer, nobody helps you,” said Prof Schneider, reflecting on the survey. “People with dementia were four times more likely to be at risk of abuse.”
Stigma is also undermining the role of care-givers and impacting on people living with the disease.
“In white culture, the attitude is about, oh, that person is an empty shell, why should we bother talking to that person. In black culture it might be more around witchcraft. What happens is that stigma stops people from getting out because they are ashamed, and they hide away. People living with dementia are often very lonely because of it, because they are hidden away, they can’t take part in anything and that also makes the dementia worse as well. And carers and families also become very lonely because they cut themselves off from the rest because they don’t want to be seen as having a problem,” said Prof Schneider.
Mncedisi Katswha at the event, wearing a purple ribbon to celebrate World Alzheimer’s Day in Khayelitsha
Mncedisi Katshwa, the deputy chairperson of the Ikamva Labantu Seniors Club, supported the idea of opening a centre to facilitate education about dementia.
“We are supposed to sit together and talk about it so that people can become familiar with it. They must stop saying of somebody who is always talking alone that she is a witch, just because of her age,” he said, reflecting on the presentation. “This has opened my eyes.”
Professor Schneider saluted the work done by Ikamvu Labantu with the aged, and said she felt it was important to communicate the research STRIDE was doing back to the very people affected by dementia. It is part of a process of engagement with the not-for-profit sector, which is struggling under the burden of the disease, and with government departments. STRIDE is partnered with Alzheimers SA, one of the not-for-profits at the forefront of this engagement.
“It’s about trying to lobby for some kind of dementia policy, although that is not going to happen that easily, but it’s about looking at how we can look at all existing policies and see how we can ensure that people living with dementia are cared for through those policies,” she said.
A useful celebration involves some singing and dancing and World Alzheimer’s Day was no exception
Ikamvu Labantu is campaigning for an old age home in Khayelitsha, with a daycare facility for the elderly. Through their work, both at the Seniors Clubs and in their aged homecare programmes, they see the need and have appealed to the Western Cape Government.
“In terms of the coverage of the African population, we only have the Gugulethu Old Age home and if it’s full, it’s full. And in most areas, the dementia wards are full as well. We have this long waiting list while seniors are abused in their homes. We feel like Khayelitsha deserves its own old age home. But they say no, they don’t have funding for it,” said Lulama Sigasana, the head of Ikamva Labantu’s Senior Citizen’s Programme.