Today is the second class in our current four class set. We will begin class with a casual conversation. Our material today is about a caregiving guide. Please listen and follow the transcript. We will also begin on your presentation preparation.
AILSA CHANG, HOST:
As a teenager in Nairobi, Kenya, Wambui Karanja got some devastating news. Her dad, a teacher in his 50s, had early onset dementia. Now, she has become an expert in caregiving and earned a One to Watch award from the Alzheimer's Association. NPR's Marc Silver spoke with her.
MARC SILVER, BYLINE: Dementia is a universal disease, but coping with dementia in Kenya where Wambui Karanja lives, brings its own challenges. The country has only about 30 neurologists, so just getting a diagnosis can be hard. And then there are certain myths, Karanja says, that can add to the stress the family feels if a loved one is forgetting things or shows memory loss.
WAMBUI KARANJA: One of the myths is that it's a normal part of aging. The other myth is that it has spiritual causes. There are people who said that my mom had sort of, like, bewitched my father because my mother is from a different ethnic community from my dad.
SILVER: This kind of reaction might make a family reluctant to visit a doctor.
KARANJA: It 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.
SILVER: Karanja's a project manager at the Brain and Mind Institute at Nairobi's Aga Khan University. She's developed training for dementia caregivers. She gives them a simple response to those who speak of just normal aging or witchcraft - tell people that dementia is caused by changes in the brain.
KARANJA: Sometimes it doesn't make it easier, but it gives them a different kind of understanding.
SILVER: Part of that understanding is realizing that dementia is a disease of moments. Listening to music might give the person 10 minutes of happiness, and then their mood might change.
KARANJA: It's constant coping with all these changes and when - I think when a family, when a caregiver understands that, like, it - that's how it happens, they cope better, right?
SILVER: And there is a lot to cope with. Her father is now in a wheelchair and needs to be fed and bathed.
KARANJA: A caregiver has to learn the skill of how to support themselves because if they can't look after their own well-being, they're not able to give the best care to the person who has dementia.
SILVER: And taking care of yourself is a challenge, she says, especially in countries that lack the resources to give support. Sometimes the best option is to ask folks in the community for help. Her family is fortunate, she says. A paid aide gives her mom the freedom to go to church and visit with friends. But at age 32, Karanja feels out of sync with her peers.
KARANJA: I couldn't stand listening to my friends complain about their dads because I'm just like, I don't have - I don't get to experience my dad the same way you get to experience yours. It's a huge loss.
SILVER: She's come to terms with the progression of the disease. Her dad doesn't always recognize her, but she's learned a new way to think about his condition. She takes great solace in the fact that she is...
KARANJA: Seeing him taken care of and living with dignity.
SILVER: Karanja wants to do more research on caregiving and is looking at how other diseases like HIV interact with dementia.
Marc Silver, NPR News.