Caring through chaos: Families endure dementia's slow, unrelenting grip

Dementia does not announce itself with a loud bang. It slips in quietly, almost invisibly, beginning with misplaced keys, forgotten directions or where you were going, names that dissolve into silence, and familiar faces that blur into strangers. Then, piece by piece, the world becomes unfamiliar. Dementia is a thief-one that does not rob in a single act, but slowly, relentlessly, until the mind is emptied and nothing feels the same. This is the story of two families whose lives have been transformed by dementia. For one, a daughter-in-law who has faced the disease twice within her family. For the other, a daughter forced to put her own life on hold to care for her mother. Both journeys are marked by grief, endurance, and an unspoken strength-the courage to remember for two. Nicole Wanja's life changed in 2023. She abandoned her personal plans and returned home to Kajiado County to care for her mother, Charity. When we meet them, Charity greets us warmly, asking how things are in Pangani. Nicole explains that whenever women visit, her mother imagines they were her schoolmates at Pangani Girls' Secondary School; when men arrive, she insists they must have been her colleagues at Postbank. Charity leads us to the sitting room, speaking fondly of Pangani Girls and Ngara, where she grew up. Yet she does not recognise Nicole as her daughter. Instead, she mistakes her for one of her sisters, calling her "Njeri" or "Njoki" during our small talk. Later, as Charity remains inside, Nicole shares her story. It began in 2022, when Nicole's cousin Stephanie noticed something unusual during a burial in Kakamega. Charity greeted people repeatedly, forgetting she had already done so. At first, the family dismissed it. But eight months later, at another burial in Chavakali, the pattern recurred. "I stayed with her and hadn't realised. She would forget one thing then remember as if nothing had happened. Her sister, my aunty, insisted we observe her. By September, I knew there was a problem and called her siblings, especially her brother, Uncle George," Nicole recalls. By January and February 2024, Charity's condition had worsened. "You could tell her to go and have a bath and she would just go, pour water on herself and come out after two minutes. I had to insist that she go back and scrub herself and that is when she would understand," Nicole says. In June 2024, a neurologist confirmed their fears: Charity had dementia. "It has not been easy. I had to quit my job to care for her. My brother is away for work. We've had five house helps, all of whom left, saying they were overwhelmed. They couldn't handle it." Nicole explains her mother must now be monitored constantly. She can still feed and bathe herself, but even these abilities are slipping away. Alongside memory loss came hallucinations. "I can't leave her for a minute. Once, I came back from the shop to find she had served five plates of food for imaginary visitors. She sees and even speaks to people who aren't there," Nicole says. Sometimes when she is confused, her outlet is anger, and Nicole is the recipient of that rage. "My mother has slapped me so many times. I've learnt to speak to her with patience. There was a time I left her in the sitting room and she disarranged everything. Now, when I lock the room, she asks why, insisting it's her house. I have to explain everything." To ease her mother's anger, Nicole adjusted her diet, reducing sugar and wheat. Before she began locking the gate, neighbours once found Charity wandering near a busy road. Nicole often misses the mother she knew-the conversations, the advice. "Sometimes you feel your mother needs to know certain things about you and not your friends, but now she cannot understand," she says. Self-care Caregivers like Nicole must also prioritise their own wellbeing-seeking therapy, taking breaks, finding support. "There was a time I found myself talking aloud while walking. A neighbour stopped me, warning that if I continued, I'd end up worse than my mother," she admits. Her fears run deep- fearing of her mother's situation becoming worse. "I have cried until I had no more tears left." At 31, Nicole has set aside her own growth to care for her mother. She also has a daughter with cerebral palsy, now enrolled in a special school. "There's pressure to marry. But if I do, who will care for my mother, who will care for my children? Marriage is not even in the picture," she shares In the final stages, dementia patients require total care for all activities-eating, dressing, bathing, toileting. Monica Njeri knows this too well. Having lost her mother-in-law to dementia, she now cares for her father-in-law. She runs an organisation supporting women living with dementia and women caregivers. "Why women? Because they bear the greatest burden," she says. Women form the majority of unpaid caregivers. Yet myths persist. Dementia is still mistaken for a curse or witchcraft in many communities. Healthcare systems, too, often dismiss symptoms. Since it's a progressive disease, maintenance is costly. "It's a marathon," Monica explains. "It's a progressive disease, it's not like cancer where we have cancer survivors. We don't have dementia survivors. Someone can live with it for 15-20 years. You can see the financial drain, it's a very expensive disease," says Monica. For families who can afford it, paid caregivers offer relief. Ann Wambui Muguero, a professional caregiver with six years' experience, describes the role as demanding. "As you take care of a dementia patient, you don't wait for them to recover. It just keeps getting worse. So, it's a bit hard and tricky, it needs a lot of patience and passion," says Ann She adds, "It's not like being a teacher, where your role is just teaching. With dementia your role will keep changing as the patients' health deteriorates. They used to walk or eat, now they need to be fed, changed, bathed. They need love." What is Dementia? Dr Zul Merali, founding director of the Brain and Mind Institute, defines dementia as a condition where the brain no longer functions as it once did. Memory loss, particularly of recent events, is often the first sign. "It is caused by dysfunction in the brain. There are many reasons why the brain function can be damaged or altered to give rise to symptoms of dementia-from high blood pressure leading to brain bleeds, to other dysfunctions that damage brain function," he explains. Geriatrician Dr Tasneem Yamani adds: "It is a neurodegenerative condition, which means it only worsens over time." Most of the time, dementia affects older persons above 60, but that does not exclude people from getting what is called early onset dementia, which can happen earlier. "Early detection of dementia helps in slowing its progression and giving people as much functional capacity as possible," says Dr. Tasneem To delay progression, it is important to identify stressful factors. Exercise, good nutrition and cognitive stimulation-such as puzzles or learning new skills-are crucial. "A lot of people don't understand the relationship between exercise and the brain. Exercise is known to help prevent cognitive impairment because it stimulates what we call neuroprotective factors-essentially nutrition for brain cells. These growth factors help maintain the integrity of brain cells," says Dr Tasneem. Dr Tasneem adds that families need support: "It's like losing someone while they are still living with you, and dementia is a long journey. "It is not dementia itself that kills, but the complications that arise from it. Poor nutrition, immobility, bed sores, infections, and sepsis are often what ultimately lead to a patient's death." Dr Zul Merali, founding director of the Brain and Mind Institute, says that between 45 and 50 per cent of dementia cases can be prevented. "Some are caused by life course events and conditions that may not be properly controlled. For example, hypertension-linked to circulation in the brain-is a major risk factor. Diabetes is another, as is ageing. But poor diet, social isolation, and insufficient cognitive stimulation also play a role," he explains. Cognitive stimulation activities include puzzles, learning new languages, taking different routes to work, or engaging in anything that breaks routine. A rising issue The population of older people is growing rapidly. By 2050, the number of individuals over 60 in the Global South is projected to increase by 300 per cent. According to the Brain and Mind Institute, Kenya does not yet have accurate figures on dementia cases. However, estimates suggest that prevalence will rise from 600 cases per 100,000 people in 2020 to 660 per 100,000 by 2050-representing a 316 per cent increase in the number of people living with dementia. "So it's an enormous rise. And as you know, with dementia as it stands, we in the Global South don't have care homes or similar facilities for those living with the condition," says Dr Merali. For years, most dementia research has been carried out in the Global North. Now, efforts are being made to bring studies closer to home. "We have set up a trial called Fingers Africa. Led by our scientists, it seeks to identify modifiable risk factors in Kenya and Nigeria. We will then run a clinical trial to expose participants to mitigating strategies, to demonstrate whether their progression towards dementia can be slowed or stopped," says Dr Merali. Dr Edna N Bosire, a medical anthropologist and implementation scientist, notes that many communities in Kenya do not understand what dementia is. Her team works to sensitise communities and prevent the mistreatment of older people. "In some communities, dementia is believed to be as a result of witchcraft. We are seeing elderly people neglected, abused, and even killed. In the areas where we do most of our work, there have been cases of lynching of older people," she says. Dr Bosire adds that stigma extends beyond the patient. "Stigma is a big issue. The fact that people don't understand the condition means families also suffer. Imagine being accused of witchcraft within your own household. Because of the way patients behave, some are locked inside their homes or kept isolated. Families are often reluctant to let them outside," she explains.

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