Dad’s Dementia Helped Researcher Find Purpose in Her Career

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A digital illustration of an incomplete human head with puzzle pieces scattered around it. — Belight/Shutterstock

There are some endearing annoyances Wambūi Karanja will never be able to share about her father. He’s quite present in her life, but years ago, when she was a teen and he in his early 50s, he was diagnosed with early-onset dementia.

Now, Karanja is 32 and her father’s illness is so advanced that he is bedridden and no longer recognizes her. Still, she tells NPR, the pain and grief of her father’s dementia has partly revealed her purpose.

For some years now, she’s worked as a project manager at the Brain and Mind Institute in Aga Khan University, located in Nairobi, Kenya. Her efforts, recently acknowledged by the Alzheimer’s Association, are focused on training families in the art of caregiving.

It’s vital work in Kenya, where some dangerous myths perpetuate about dementia, causing people to delay or dismiss necessary care. Some say dementia simply happens with age, while others believe it has intangible, spiritual causes.

Karanja’s own mother was accused of placing her father under a spell because she is from a different ethnic community. In doing her work, Karanja helps families understand that “dementia is caused by changes in the brain,” enabling them to accept the truth of the diagnosis and preventing them from pursuing ineffective or costly treatments.

Her efforts also support caregivers themselves. With only 30 neurologists across a nation of more than 55 million people, Kenyan families navigate dementia with little professional support, relying instead on community members and, when possible, paid aides.

Building upon the idea that “dementia is a disease of moments” — a loved one may light up during music, then grow agitated minutes later — Karanja teaches families to cope with that constant shifting rather than search for explanations.

She also emphasizes that “a caregiver has to learn the skill of how to support themselves, because … if a caregiver is not well, they will not be able to look after the person with dementia,” adding, “find time for yourself to enjoy things.”