When Wambūi Karanja's friends gripe about the annoying habits of their fathers, she feels out of sync.
"I [can't] stand listening to my friends complain about their dads, because I don't get to experience my dad the same way you get to experience yours," she says. "It's a very lonely thing."
When she was a teenager growing up in Nairobi, Kenya, Karanja's family got devastating news. Her dad, a teacher then in his 50s, had early onset dementia.
Now 32, Karanja grieves the milestones and achievements her dad hasn't been able to share — her graduation from college, for example, and her budding career as a researcher.
But that family tragedy has given her, as she says, a "purpose." A project manager at the Brain and Mind Institute at Nairobi's Aga Khan University, Karanja has devoted her career to training families in the art of caregiving. At the Neuroscience Next conference of the Alzheimer's Association this year, Karanja was named "One to Watch" for her work.
NPR spoke to Karanja after she received this honor. She talked about what it's like facing dementia in Kenya. This interview has been edited for length and clarity.
You say that there are myths about dementia in Kenya. Can you explain?
One of the myths is that it's a normal part of aging.
[That] stops them from seeking help and understanding what's happening with the person and then planning around that condition, so it just creates a situation where people don't know what to do.
The other myth is that it has spiritual causes.
So you mean they blame the person for something they did to bring on this condition?
Yes, sometimes it's a way of blaming the person – but also blaming the family they're part of, even blaming the partner of the person with dementia. There are people who said that my mom had bewitched my father, because my mother is from a different ethnic community from my dad.
How do you advise a family to respond to these kinds of statements?
I tell people that dementia is caused by changes in the brain. It gives [others] a different kind of understanding.
That's a very straightforward statement – and important for the family to understand as well.
Acceptance of a diagnosis stops families from running to get the next solution.
And you've seen that search for a non-existent cure?
Yes, families will take loans to go to India to get further diagnosis for a condition that will not change, right? So I think the biggest impact is getting the families to slow down and understand and accept the diagnosis, then prepare for the future, understanding that this is a difficult disease [and] an everyday challenge.
But just getting the diagnosis in Kenya must be so challenging – I read that there are only 30 neurologists in Kenya for a population of over 55 million.
It's a very small fraction of people that get a dementia diagnosis in the Global South, and it's those who can afford to see a psychiatrist or a neurologist.
My partner was diagnosed with dementia, and I have come to see that dementia is a disease of moments. Your loved one might be happy listening to music, then might become agitated – and you can't always figure out why. And it's not your fault!
[With] music, the person will come alive, and their mood will change. That moment might last for 10 minutes. It's constant coping with all these changes. And when a family, a caregiver, understands that, they cope better, right?
You really emphasize the importance of supporting the caregiver as well.
A caregiver has to learn the skill of how to support themselves, because if they can't look after their own well- being, if a caregiver is not well, they will not be able to look after the person with dementia.
Find time for yourself to enjoy things.
Is your mom able to find time for herself?
She was in that space of: I'm the one who can give the best care for my dad — and until we got a really good [paid] caregiver, that's when she started going back to church every Sunday, and it's really improved her well-being and happiness.
I imagine that in Kenya, as in the United States, it's hard to find a good aide.
Sometimes the only option is to rely on help from community members.
Are there ways that you are able to find moments of … perhaps not joy but a feeling that your family is doing the best they can?
With my dad, for the last three years, he's been bedridden and he's not been able to recognize me. Honestly the thing that brings the joy is seeing him taken care of and living with dignity.
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