Dementia, Wambūi Karanja says, is “a disease of moments." One minute, a loved one is present and laughing; the next, they are confused or somewhere else entirely, especially in the early stages.
“And if you don't understand that, you start blaming the person instead of the disease."
For many families, that misunderstanding is where the journey begins.
Memory problems do not always look like illness. In the popular imagination, disease is physical: pain, fever, something you can point to. Not someone getting lost or forgetting recent activities and conversations.
So, families reach for other explanations and move from place to place, looking for answers that make sense.
“By the time most people get a diagnosis, they have already spent significant time and resources, and the disease is often already advanced," she says.
For Ms. Karanja, this is personal.
She was still a teenager when her father, a teacher in his 50s, began showing signs of early-onset dementia. It was difficult to make sense of what was happening.
“He was the one who guided me in making decisions. When he became unwell, it felt like I had lost my compass."
More than a decade later, her father requires round the clock care and no longer recognises her and other members of her family. What began as private grief has since shaped the direction of her life's work.
Today, she is a project manager at The Aga Khan University (AKU) Brain and Mind Institute (BMI), where she supports families navigating similar journeys. Her work has also gained international recognition. She was named “One to Watch" at the Alzheimer's Association's Neuroscience Next conference, an honour that she describes as both affirming and grounding.
A turning point came during the Atlantic Fellowship at the Global Brain Health institute, housed in Trinity College Dublin, in Ireland between 2019 and 2020. During clinical rounds, she encountered a model of care she had never seen before, where families were supported immediately after diagnosis, rather than being left to find their footing alone.
The experience changed how she thought about care.
When she returned to Kenya, she adapted those lessons to local realities. She adapted a training course developed by Alzheimer's Society of Ireland for Kenyan Family caregivers. At BMI, she now leads a training program focused on practical family caregiver support and preparation for the long road ahead.
Dementia care can stretch across 5 to 20 years, demanding constant adjustment as needs evolve as the disease progresses. It reaches beyond the person diagnosed, reshaping the lives of everyone around them.
“This is not a one-person responsibility. It requires a community."
For Ms. Karanja, acceptance of the diagnosis is a crucial turning point. Once families accept the diagnosis, they are better able to stop searching for quick fixes and begin preparing for the realities ahead. .
But preparation also requires recognising that care cannot be carried out alone. It depends on shared responsibility and community support.
This perspective also informed her earlier work with organisations such as the Alzheimer's and Dementia Organization Kenya, where she volunteered from 2016 to 2021, helping connect caregivers to peer support and practical guidance.
It is also a lesson she has learned firsthand. In her early work, she often facilitated training sessions alone. The emotional weight eventually became unsustainable. She has since changed her approach, building in shared responsibility and more sustainable ways of working.
At home, care is shared across her family. The weight is collective, and so is the meaning.
There are still grounding moments, but what brings her peace is knowing her father is cared for and living with dignity.
