Lost memories, lost time: Why dementia care needs urgent action

Dementia is tightening its grip on Kenya, a growing health crisis that remains largely misunderstood, stigmatised, and often overlooked. Families struggle in silence as loved ones exhibit signs of memory loss, confusion, or personality changes, frequently dismissing these symptoms as a normal part of ageing. In some cases, cultural beliefs attribute dementia to supernatural forces, delaying crucial medical intervention.

Dr Edna Bosire, a medical anthropologist at the Brain and Mind Institute (BMI), highlights how stigma and misinformation prevent early diagnosis and access to care. Her findings stem from a study she led at the Aga Khan University’s Brain and Mind Institute in collaboration with the Davos Alzheimer’s Collaborative (DAC) and Aga Khan University Hospital, Nairobi (AKUH,N), which sheds light on these challenges.

“The findings reveal a troubling reality-stigma, lack of awareness, and misinformation prevent early diagnosis. Caregivers are left to shoulder the burden with little support, and participation in dementia research is hindered by cultural concerns and mistrust,” Dr Bosire explains. 

By the time families seek medical care, the disease has often progressed to advanced stages. Dr Bosire adds, “Even then, the journey to diagnosis and support is riddled with obstacles. A shortage of trained healthcare professionals, high costs of care, and a lack of awareness leave many families feeling lost and overwhelmed.” 

Dementia is an umbrella term for a range of brain disorders that impair memory, thinking, behaviour, and the ability to perform daily tasks. The World Health Organization (WHO) estimates that over 55 million people globally live with dementia, with nearly 10 million new cases reported annually.

In Kenya, the Alzheimer’s and Dementia Organisation Kenya (ADOK) estimates that around 60,000 people are affected, a number expected to rise due to an ageing population.

The early signs of dementia include memory loss—such as forgetting names, appointments, or important events—and difficulty performing familiar tasks like cooking or managing finances. People may also experience confusion and disorientation, sometimes getting lost in places they know well. Changes in personality and mood, including withdrawal, anxiety, or aggression, are also common. As the condition progresses, individuals may struggle to communicate, fail to recognise loved ones, and lose the ability to carry out basic self-care.

Dementia can result from various diseases and conditions that affect the brain, with Alzheimer’s disease being the most common cause, accounting for 60-70 per cent of cases. Other types include vascular dementia, caused by reduced blood flow to the brain; dementia with Lewy bodies, linked to abnormal protein deposits in the brain; and frontotemporal dementia, which affects the frontal and temporal lobes of the brain.

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Risk factors include ageing, family history, cardiovascular diseases, smoking, and a sedentary lifestyle.

Dementia does not only affect patients—it places a heavy emotional, physical, and financial burden on caregivers. Dr Sylvia Mbugua, a neurologist and Head of Section at AKUH,N, emphasises the need for better support systems.

“Dementia steals a person’s sunset years. It changes their personality, memory, and independence.”

There is currently no cure for dementia, but treatment focuses on managing symptoms and improving quality of life. This includes medications such as cholinesterase inhibitors like donepezil to help with cognitive symptoms, cognitive therapies designed to enhance brain function, and support groups that provide guidance and emotional help for caregivers and families.

Recent breakthroughs in dementia research offer some hope. Drugs such as lecanemab and donanemab have shown promise in slowing cognitive decline by about 30 per cent, but their high cost limits accessibility, particularly in Kenya.

While dementia cannot always be prevented, certain lifestyle changes can significantly reduce the risk. Regular physical exercise improves both cardiovascular and brain health, while a diet rich in fruits, vegetables, whole grains, and nuts supports overall well-being.

Engaging in mental and social activities, such as learning new skills and staying socially active, also plays a key role in maintaining brain function. A recent study published in the journal GeroScience found that daily nut consumption could lower the risk of dementia by 12 per cent.

Also, a comprehensive national response is vital to ensure accessible diagnosis and care.

The Ministry of Health is beginning to take steps towards integrating dementia care into the national health strategy. Dr Mercy Karanja, Director of the Mental Health Division at the Ministry of Health, underscores the need for policy-driven solutions.

Professor Zul Merali, Founding Director of the BMI, points out: “We must invest in research, not only to better understand dementia but also to develop solutions that work within our communities.”

By prioritising dementia care, Kenya has an opportunity to reshape its future, ensuring that every person affected by this condition receives the dignity, support, and care they deserve.