Turn on more accessible mode

Turn off more accessible mode

Skip Ribbon Commands

Skip to main content

Turn off Animations

Turn on Animations

Focus on Content

Focus on Content

AKU
Students
Alumni
Faculty
Media
Careers
Libraries

DAC-1 | Brain & Mind Institute | The Aga Khan University

COVID Updates
Admissions, Pakistan
Admissions, East Africa
News
Events
WearAKU
University Hospitals
Examination Board

Brain & Mind InstituteCurrently selected

Information for

Students
Alumni
Faculty
Media
Careers
Libraries

Home
- Brain & Mind Institute
  - Brain & Mind Institute
    - Research

Attitudes and Perceptions of Dementia in Kenya

Dementia, including Alzheimer’s disease, is on the rise in sub-Saharan Africa, yet awareness and understanding of the condition remain critically low, particularly in East Africa. Many symptoms, such as memory loss, are often misattributed to aging, spiritual causes, or supernatural beliefs, leading to delayed diagnosis and care. This study explored perceptions of dementia among patients, caregivers and healthcare providers at Aga Khan University Hospital in Nairobi, revealing significant stigma, financial barriers and gaps in healthcare training. The research also highlighted community concerns about biospecimen donations and participation in clinical trials. These findings underscore the crucial need for dementia awareness campaigns, caregiver support programs and culturally sensitive policies to improve dementia care and research participation in Kenya.

Download the Complete report and the Policy report.

Principal Investigator

Edna Bosire, PhD

Assistant Professor and Medical Anthropologist

Implementing team

Lucy Kamau

Research Assistant

Caroline Kiio

Research Assistant

Caregiver’s perspective

Maria’s changing world: A personal journey with Alzheimer’s

The morning sun casts a golden hue over the bustling streets of Nakuru. Maria, a seasoned 60-year-old shopkeeper, methodically arranges sacks of grains at her busy cereal shop. Her hands move with the practiced rhythm of decades in the trade, but her furrowed brow tells another story. Customers come and go, their chatter filling the air, but Maria seems momentarily lost in thought. A young boy asks her for change, and she hesitates, unsure of the amount. The boy waits patiently as she fumbles with the notes and coins, muttering softly, “I used to be so quick with numbers.”

Maria has lived in Nakuru County, Kenya for years, running her shop with pride. Sundays are her cherished respite; days for church and visiting her sister. Yet, lately, even these routines have become tinged with unease. Maria often finds herself retracing her steps, wondering why she entered a room or where she placed her keys. She brushes it off with a nervous laugh, but deep down, she knows something is amiss.

Her niece, Farida, first noticed the changes two years ago. Maria, once the life of family gatherings, began repeating stories, sometimes ten or fifteen times in a single day. At first, everyone laughed it off, chalking it up to aging. But the laughter faded as Maria’s forgetfulness grew more pronounced. She began misplacing shop records, forgetting customers’ names and even getting lost on her way to familiar places like her home.

“It started with headaches,” Farida recalls. A recent graduate in journalism, she had always looked up to her aunt as a beacon of strength. “In 2020, she complained of recurring headaches, and not long after, her memory started slipping.” Visits to the local hospital provided little clarity. Doctors dismissed her forgetfulness as a natural part of aging, with some attributing it to diabetes and hypertension, conditions Maria had managed for over a decade.

But the signs were undeniable. In early 2022, Maria’s behavior took a troubling turn. She often refused to stay at home, insisting on visiting Farida and then refusing to leave. Her moods became unpredictable, irritability replacing the warmth Farida had always known. Alarmed, Farida moved in with her aunt to provide consistent care.

Determined to find answers, Farida delved into online research and stumbled upon a term that resonated deeply: dementia. The possibility struck a chord of fear and urgency. Farida’s mother - Maria’s sister - believed her condition was a result of poor diet or complications from diabetes, but Farida suspected something more.

In February 2022, a visit to Rift Valley Provincial Hospital led to a referral to a specialist in Nairobi. By the time Maria was finally seen at Aga Khan University Hospital, her symptoms had progressed significantly. Tests confirmed what Farida had feared; Maria was living with early-onset Alzheimer’s disease.

The diagnosis brought clarity but also a heavy burden. Maria’s world began to shrink in ways that frightened her. She relied heavily on Farida, who became her primary caregiver. The young woman took it upon herself to ensure her aunt’s medications for Alzheimer’s, diabetes and hypertension were taken on time, and she encouraged Maria to stay active and engaged despite the challenges.

Farida speaks candidly about the obstacles they face. “The long trips to Nairobi every six months to see the neurologist are exhausting. And managing her mood swings is tough,” she admits. Yet, she finds solace in the quality-of-care Maria receives. “If it wasn’t good, trust me, we wouldn’t keep going back.”

Maria’s children, though living far away, contribute financially, easing the strain on Farida. Despite the challenges, Maria finds moments of joy in her routine. Sundays with her sister remain her anchor, even if she occasionally forgets the details of their conversations.

In the quiet of her home, Maria sometimes reflects on her journey. “I know I am forgetting things,” she says softly, her voice tinged with both acceptance and sadness. But with Farida by her side, she continues to face each day with resilience, her spirit unyielding even as her memories fade.

© The Aga Khan University,

Terms of Use | Emergency Info | OneAKU | Webmail | Sign In | Contact Us