Facing dementia without a diagnosis is crushing. A new program in Kenya offers help
By Nurith Aizenman
Joyce Mutisya, 71, outside her home in Wote, Kenya. For years she's struggled with symptoms of dementia. But she didn't realize it was a condition for which she could seek professional help. Claire Harbage/NPR hide caption
toggle caption Claire Harbage/NPRJoyce Mutisya, 71, outside her home in Wote, Kenya. For years she's struggled with symptoms of dementia. But she didn't realize it was a condition for which she could seek professional help.
Claire Harbage/NPRIt's a part of getting older that many people worry about: The increased chance of developing diseases like Alzheimer's that cause dementia.
In wealthy countries, getting an early diagnosis can at least help a person's family understand and support them and sometimes get them on medications that can ease their symptoms.
In lower income countries, many people with dementia don't get that chance – suffering needlessly as their condition goes unrecognized.
Now there's an effort to change that in rural Kenya.
A 'problem of forgetting'
To give a sense of the dimension of the challenge there, a community health volunteer named Susan Mutua leads me through an orange grove to a small, concrete block house belonging to a widow named Joyce Mutisya.
Susan Mutua leads the way to Joyce Mutisya's home in Wote, Kenya. Mutua is one of several community health volunteers enlisted by researchers to go house-to-house to screen local seniors like Mutisya for dementia. Claire Harbage/NPR hide caption
toggle caption Claire Harbage/NPRSusan Mutua leads the way to Joyce Mutisya's home in Wote, Kenya. Mutua is one of several community health volunteers enlisted by researchers to go house-to-house to screen local seniors like Mutisya for dementia.
Claire Harbage/NPRMutisya, who is 71, is full of laughter as she teaches me the proper greeting in the local language, called Kamba.
But her mood turns sad as she describes some ways her mind started betraying her beginning about six years ago.
For instance, she'd go to check on her chickens and, without quite realizing it, place her house keys next to the eggs.
Then there was the time her church entrusted her with the funds for a building project.
"About $130 dollars," she says — a hefty sum in this farming community just outside the southeastern town of Wote.
Mutisya, who was church treasurer, says when she went to deposit the money in the bank, "I realized I had completely forgotten where I'd stowed it."
For three months she told no one. "I was just crying and praying that I would find the cash before anyone asked for it."
Until one day she happened upon it ... stashed under her mattress.
Soon after Mutisya concluded that she should step down as treasurer. It was a painful decision, she says. "When you are chosen for this by the people in your church, you just feel proud, you just feel you are so special."
Joyce Mutisya (left), with her daughter-in-law Monicah Ndanu. Mutisya says her dementia symptoms have led to many stressful situations, such as the time she misplaced funds entrusted to her by her church. Claire Harbage/NPR hide caption
toggle caption Claire Harbage/NPRYet at the time, Mutisya says of this "problem of forgetting" as she calls it, "I just thought it was because I'm getting older."
It never occurred to her that she might have a medical condition.
Until last spring, when she was first visited by Susan Mutua, the community health volunteer who's brought me here today.
Mutua is one of 10 locals who were enlisted by a team of Kenyan researchers to go house-to-house among 3,500 seniors in the area – armed with a screening tool.
Joyce Mutisya (left) talks with community health volunteer Susan Mutua, who screened her for possible dementia several months ago. Mutisya's responses raised enough red flags for Mutua to refer her to the local hospital for a professional opinion. Claire Harbage/NPR hide caption
toggle caption Claire Harbage/NPRJoyce Mutisya (left) talks with community health volunteer Susan Mutua, who screened her for possible dementia several months ago. Mutisya's responses raised enough red flags for Mutua to refer her to the local hospital for a professional opinion.
Claire Harbage/NPRAlso, adds Mutua, there are sequences of words.
"Like here we have 'house,'" she says, pointing. "We have 'boat', we have 'fish.' And I tell them, 'Repeat as I've said.' "
Failing to repeat the sequence properly is another red flag.
Mutisya's responses raised enough of them for Mutua to refer her to the local hospital for a professional opinion.
How prevalent is dementia in Kenya?
The lead researcher behind this effort is , of the non-profit .
Speaking from her office in Kenya's capital of Nairobi, Musyimi explains that the first goal was to answer a pretty basic question: How prevalent is dementia in Kenya?
"That has been a life changing [project] in Kenya," she notes, "because it is the first one in Kenya to generate that information and evidence."
Normally the screening questionnaire is used by health-care workers. And in wealthy countries, it's typical for someone with possible dementia to get their diagnosis from a neurologist.
But the hospital in Wote has no neurologists, says Musyimi. In fact it only has one psychiatrist "serving a population of about 1 million," she says. "So in the entire county there is no other psychiatrist. And there are many other counties in Kenya that don't have a psychiatrist."
By training the volunteers to do the initial screening, Musyimi and her collaborators were able to estimate that among adults over age 60 in the county, 9% have some form of dementia.
Musyimi says getting that data has been crucial because it's helping her make the case for the ultimate goal here: Ensuring that Kenyans with dementia get care for their condition.
— that's funded by the World Economic Forum. It's supporting similar efforts in both wealthy countries such as the United States as well as several lower income ones such as Armenia, Brazil, Jamaica, and Mexico.Why it's hard to get care
In Kenya, Musyimi says the next task will be ensuring that people who screen positive have more locations to seek care.
The county hospital serving Wote has recently added a psychologist as well as nurses focused on mental health – and assigned them to a brain health center with its own waiting and exam rooms.
Damaris Mulinge, a psychologist at Makueni County Referral Hospital. She's one of several staffers whom the hospital recently assigned to a brain health center aimed at making it easier for dementia patients to get care. But it's the only facility offering such treatment in the county. And the hospital has no neurologists and only one psychiatrist. Claire Harbage/NPR hide caption
toggle caption Claire Harbage/NPRDamaris Mulinge, a psychologist at Makueni County Referral Hospital. She's one of several staffers whom the hospital recently assigned to a brain health center aimed at making it easier for dementia patients to get care. But it's the only facility offering such treatment in the county. And the hospital has no neurologists and only one psychiatrist.
Claire Harbage/NPRThat way, says the psychologist, Damaris Mulinge, "the dementia patients don't have to be kept waiting long. Instead of starting at the reception [serving all] outpatients they can go directly to us."
But the hospital is the only option for dementia services in the county. And Musyimi, the researcher, notes that among older people identified as possible dementia cases during the screening project, only a tiny fraction actually followed through on their referral.
"Most could not go to the hospital because it was far," says Musyimi. "So it's like you're taking the whole day to go to the hospital and back."
Then there's the expense, she says.
"You would call a family member and they would say, "No, Unfortunately we can't come [to the hospital]. We need transport."
Rose Ngina, 70, is a senior in Wote who screened positive for dementia during the research project. She used to spend hours in a dark corner of her living room staring at the wall. But her relatives say now that they've learned that Ngina's strange behavior was a symptom of dementia, they are making a point of bringing her outside. Claire Harbage/NPR hide caption
toggle caption Claire Harbage/NPRRose Ngina, 70, is a senior in Wote who screened positive for dementia during the research project. She used to spend hours in a dark corner of her living room staring at the wall. But her relatives say now that they've learned that Ngina's strange behavior was a symptom of dementia, they are making a point of bringing her outside.
Claire Harbage/NPRWhen Mutunga would come by asking to borrow some grains to cook, Ngina would claim she had none – when it was clear she had plenty. Mutunga says she never snapped at her mother-in-law, "but I would feel upset."
Ngina would also spend hours staring at the wall in a dark corner of her living room. "You'd go and ask her, 'Why are you keeping alone all day?' " recalls Mutunga. "And she'd say, 'I don't feel well.' " So Mutunga would let her be.
But ever since Mutunga learned that Ngina's strange new habits were the result of a medical affliction, she says she's made a point of bringing her mother-in-law outside to sit with her as she does her chores. And, gradually, she says, she's noticed that Ngina's sense of joy has returned.
"I think it is because I'm around," says Mutunga.
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