How Stigma And Misconceptions Shape Care For Dementia In Kenya

Dementia is rapidly emerging as one of Kenya’s most pressing health challenges, yet it remains largely misunderstood, often ignored, and wrapped in stigma.

 Thousands of families struggle in silence. When a loved one starts forgetting names, getting lost in familiar places, or struggling to communicate, it is commonly dismissed as “just old age.” In some cases, cultural beliefs blame supernatural forces, delaying much-needed medical help.

A study by the Aga Khan University’s Brain and Mind Institute (BMI) in collaboration with the Davos Alzheimer’s Collaborative (DAC) and Aga Khan University Hospital, Nairobi (AKUH, N)sheds light on these challenges. Led by Dr Edna Bosire, the research explored perceptions of dementia among patients, caregivers, and health care providers AKUH, N as well as within informal settlements.

“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,” said Dr Bosire.

By the time families seek care, the disease has often progressed to an advanced stage.

 “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,” added Dr Bosire.

Making dementia care a priority

Despite the rising number of dementia cases in Kenya, investment in research and care remains limited. Professor Zul Merali, Founding Director of the Brain and Mind Institute, emphasized the urgent need for action. “We must invest in research, not only to better understand dementia but also to develop solutions that work within our communities. Our goal is to create a system where dementia care is accessible, affordable, and evidence-based,” he said.

The healthcare system is struggling to keep pace. Dr Sylvia Mbugua, Neurologist and Head of Section at Aga Khan University Hospital, Nairobi, highlighted the importance of early diagnosis and training for health care providers.

“Dementia steals a person’s sunset years, it changes their personality, memory, and independence,” she noted. “The more we understand it as a disease, the better we can care for our loved ones with patience and empathy. Early diagnosis is key, but we also need more trained specialists and national policies that prioritize dementia as a public health issue.”

Integrating dementia care into Kenya’s national health strategy is critical. Kenya’s Ministry of Health has begun making strides toward this goal, but more work remains.

Dr Mercy Karanja, Director of the Mental Health Division at the Ministry, underscored the importance of policy-driven solutions. “We are working to integrate dementia care into Kenya’s broader mental health strategy, training health care workers, improving access to diagnosis and developing community-based support programs. But there is still much to be done in ensuring clear policies are in place,” she stated.

While the challenges are undeniable, this study provides a foundation for change. With the right policies, increased awareness, and stronger healthcare investment, Kenya has an opportunity to reshape the future of dementia care, ensuring that every person affected by this condition receives the care and support they deserve.

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