Living with dementia in southern Africa is a heartbreaking challenge

Namibia, AfricaRelatives of Ndikuhoole Johanna Nakamhela began noticing the changes eight years ago when she struggled to recall significant moments in her life. She also seemed anxious when mingling with members of her church, something she’d done easily in her decades as a minister’s wife. These changes weren’t typical of the normal aging process, her doctor said, and a brain scan confirmed as much.

Now, when the 77-year-old Nakamhela potters in her kitchen at home in Kalkfeld, a small town just north of the Namibian capital, a caregiver hovers nearby to ensure that she doesn’t leave a pot unattended on the stove or get into trouble with an open gas flame. Her changing brain state often seems to trap her in a private inner world. But other times, her body language indicates she’s content, even when words fail her.

Nakamhela is one of almost 7,700 Namibians living with dementia in a population of 2.5 million. Across southern Africa, nearly 300,000 people were estimated to suffer from dementia in 2019, according to the The Lancet Public Health journal. As this population grows, and as gains in healthcare enable people to live longer, dementia in the region is expected to rise by 185 percent by mid-century, reaching around 830,000 cases by 2050.

Care for older people in Africa usually falls to families, with informal kinship networks serving as one of the primary ways to look after the aging population. But these traditional care and support systems are unraveling, even as people live longer and the number of older people with degenerative brain diseases swells. This raises questions about how communities will properly care for their elders if state social services don’t step in.

“Modern life has eroded that [traditional care],” says Phazisa Mbilini, a social worker from the South Africa-based non-profit Dementia SA. “With people getting more westernized, they think they’re living for themselves and not for other people.”

The Nakamhela family remains tight-knit, despite experiencing some of the same shifts reshaping the social geology of the subcontinent: urbanization, modernization, migration. The couple’s children—two lawyers, a chef-turned-journalist, and a tour guide—are now supporting their mother in her dotage.

By early 2021, she needed a daytime caregiver at home. Her husband Ngeno-Zacharias, also 77, a retired pastor, couldn’t stretch his pension far enough to cover this cost, so two of their sons are paying for the extra care. Another returned from South Africa to live with his parents to help with their needs.

The Nakamhela family is doing what many dementia experts recommend: When possible, rather than move their loved one into a private or state-run facility, allow the person to live in the familiarity and security of their own home or community.

Degenerative brain diseases

Dementia is the catch-all term for a range of slow-burning brain diseases that have similar symptoms: the incremental fading of a person’s memories and their ability to think and reason; changes in personality or behavior; and sometimes a loss of language or analytical skills. Alzheimer’s is the most common form of dementia, according to the Alzeihmer’s Association, based in Chicago, Illinois. Other degenerative brain diseases include vascular dementia, Lewy Body dementia, and frontotemporal dementia.

One of the hurdles to detecting these diseases early and starting treatment is that many doctors and nurses might misread these symptoms as signs of normal aging, says Karen Borochowitz, founder and director of Dementia SA. A 2019 Alzheimer’s Disease International report confirms this, finding that 62 percent of healthcare practitioners globally see dementia symptoms as run-of-the-mill aging.

Another factor that slows detection in Africa is the shortage of skilled medical specialists such as geriatricians, and the inaccessibility of expensive diagnostic brain scan technology, according to Borochowitz.

Kahimbi Mushanana is one of the many southern Africans who has not received a formal dementia diagnosis for these very reasons. The 82-year-old lives in a village 620 miles northeast of the Nakamhela home.

Mushanana’s son, Irvine, first noticed something was amiss in 2017 when his mother began repeating herself, looping through the same morning greetings or asking questions about things she should have known. Once, when she didn’t return from a routine trip to town, he found her lost on its once-familiar streets.

Doctors dismissed her faltering memory and disorientation as ordinary aging, but her son had an instinct that there was more to it than the simple misfiring of an octogenarian brain. Researching the symptoms online, he narrowed things down to descriptions of dementia. Even without a formal diagnosis, this knowledge has allowed the Mushanana family to understand the progression of the suspected disease, how to manage the 82-year-old’s changing behaviors, and adapt the home environment to keep her safe while also remaining socially connected.

Living with dementia

One spring morning in 2021, Nakamhela pored over an old photograph with her husband at her side. Whether her brain made connections to what she was seeing was unclear: Did she recall that the younger man in the picture is the pastor she married half a century earlier? Did she know that the child in the monochrome photograph, wearing a shirt and suspenders, is one of her four now-adult sons?

Living with dementia can be bewildering, both for the person living with the condition, as well as those close to them. Many of the person’s behaviors might be seen as “problematic,” explains Allen Power, a geriatrician with Canada’s University of Waterloo Research Institute for Aging. This highlights the need for education and outreach for family members like those of Nakamhela and Mushanana, he says.

Those closest to a person with dementia report struggling with how to communicate when a loved one can no longer find words to express themselves. Some may need to accept that their loved ones can’t recognize a spouse of 50 years or their grown children. How do they protect someone if they wander off into once-familiar territory and can’t find their way home again? They may need to manage distressing departures from reality or fantastical, aggressive rants or volcanic language from someone who seldom cursed. They might need to restructure their lives to keep someone safe when ordinary kitchen activities become dangerously unfamiliar. They have to learn to cope with physical aggression or lapses in hygiene.

Power explains that each individual’s experience of dementia will be unique, shaped by their own abilities, environment, and the progression of their degenerative disease. Viewing these symptoms as a disability rather than a disease can help home caregivers work around the sometimes confounding reactions.

“Many of the problem behaviors might be an attempt to communicate,” says Power.

“If someone starts hitting in the shower, they might be trying to tell you that the water is too cold. What in the environment needs to change, in response to the person’s attempt to communicate when they no longer have language?”

Since Getrud Kangandi began caring for Nakamhela early in 2021, the 35-year-old has grown to know her client well. Even though Nakamhela can’t express her needs, Kangandi knows she likes to wander through the family vegetable garden, and will stroll along with her to help her find the way. Allowing a person to keep doing what has always given them joy is important to their well-being, says Power.

Consistency of care is also key as a person’s dementia progresses, explains Power. The better a caregiver knows the person in their charge, the more they will understand their non-verbal communications.

Educating the public, families, and caregivers 

Education can help destigmatize symptoms tied to dementia, as well as change how society views what is often seen as a “slow motion disaster,” according to mental health experts. Even the most sympathetic voices tend to use demeaning terminology in dementia narratives, describing someone as “lost” to their family, and their dementia as a “long death” while a person “fades away.”

“This may feel true for those nearest to the person,” Power says, “but this assumes that a person living with dementia is a passive recipient of care, forgetting that they are still active agents in their own lives and can still participate in the world around them.”

Burnout is one of the biggest difficulties facing at-home caregivers, according to Dementia SA’s Phazisa Mbilini, particularly when the burden falls on a single individual, usually a spouse, sibling, or adult child.

“Caring for someone living with dementia is a 24-7 thing,” she says. “Often, a person with dementia won’t sleep, or they might wake up during the night and want to wash curtains, or go to town.”

When engaged with education and outreach, Mbilini often encounters caregivers who believe they can’t leave the house or do anything else, because they need to stay with their loved one at all times.

“We try to advise the carer that they must allow other people to help them and give themselves time to go out and engage with others,” she says. “They mustn’t be ashamed to say they’re exhausted.”

One family’s care circle 

As Mushanana’s dementia advances, the world around her remains relatively constant and her family has adapted to her changing needs. She lives with her extended family in a cluster of rustic wattle-and-daub homes, deep in the dry Namibian countryside, with no running water or electricity. The family cooks over an open outdoor fire. Her daughter Eunice is her primary day-to-day caregiver. Her son Irvine, who lives and works in nearby Katima Mulila, provides financial support and visits regularly.

As she ages, Mushanana requires help with bathing, dressing, and other basic needs. She can’t tend the cooking fire anymore and needs supervision during the day, since she loves to wander off into the nearby croplands where the family grows some of their food. Three of her granddaughters sleep in her two-room home so they can keep an eye on her at night.

The family lives far from the better-resourced cities, which might have care agencies that supply skilled or semi-skilled care staff. But these options are too expensive for most families, explains Borochowitz of Dementia SA. Most of those providing care in the region are domestic workers who may have rudimentary training in caring for the aging. Few have formal training for working with a person living with dementia, according to Dementia SA.

With the lack of trained caregivers or access to private or state-run outpatient support or residential care facilities, non-profit organizations have become critical to help families and communities access information and support, says Mbilini, who offers much of Dementia SA’s training and outreach programs in South Africa. These are particularly important forms of support for single-caregiver situations.

Around the world, the burden of caring for children and the elderly—the so-called “second shift”—falls largely to women who are often unpaid. The World Health Organization’s 2021 Global Status Report on the Public Health Response to Dementia estimates that 70 percent of this kind of dementia care is done by women.

“In 2019, informal dementia carers spent over 89 billion hours providing support with activities of daily living (ADLs)—about 5 hours per day per person with dementia. Informal care provision… is particularly high in countries with low resources where there is a scarcity or lack of formal support services for dementia,” says the report.

Civil society organizations such as the social justice-focused think tank Institute for Economic Justice in South Africa suggest that extending social welfare grants or even instituting a universal basic income grant can support family members who do this kind of unpaid care work.

But in a setting as rural and traditional as Mushanana’s, her changing state of mind does not seem to disrupt the family’s normal day. One morning she took a seat on the sandy ground amid the cluster of thatched family homes. She chattered away contentedly, to no one in particular, and chuckled, clapping her hands in mirth. Then maternal instincts kicked in as a toddler nearby cried in distress. Mushanana reached for the child, drawing the whimpering girl onto her lap for comfort.

Grandmother and great-granddaughter sat in wordless communion while the rest of the family went about their day.

Showing love and acceptance to their aging matriarch is central to her wellbeing, says Irvine: “We must understand and accept that this is how she is now.”