Facing dementia without a diagnosis is crushing. A new program in Kenya offers help

It'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.

Mutisya, 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."

Yet 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.

Mutua takes it out of her purse. It's essentially a checklist of questions.

"For example," she says, "We ask them, 'How many times do you feel lonely?' – since isolation can be a marker of dementia.

Also, 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 Christine Musyimi, of the non-profit Africa Mental Health Research and Training Foundation.

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.

By referring all these people who screened positive to the hospital, says Musyimi, "We are creating a need. Telling the policymakers that, 'You know, something needs to be done about dementia.' "

Indeed, with no cure for dementia, even families in wealthy countries like the United States often have difficulty finding the best treatment for loved ones afflicted with it.

The project in Kenya is actually part of a global initiative to address dementia — called the Davos Alzheimer's Collaborative — 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.

That 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."

Another challenge, says Musyimi, will be increasing Kenyan's access to psychotropic medications that can sometimes ease dementia symptoms.

"For example if someone is having hallucinations," she says.

The difference a diagnosis makes

That said, adds Musyimi, it can often also be helpful to address other, more easily treated conditions that can exacerbate dementia — for example diabetes and hypertension. And even simply alerting relatives of a dementia patient to what is happening to their loved one can make a big difference.

That's been the experience of another woman in Wote whom Susan Mutua, the community volunteer, takes me to meet.

Rose Ngina is a petite woman of 70.

Her dementia is so advanced that she has a hard time speaking. But she greets us with a warm smile.

Ngina's daughter-in-law, Joyce Mutunga, says it's a stark contrast to the state Ngina was in when Mutua first came by to do the screening. At the time, Mutunga, says she hadn't known what to make of her mother-in-law's behavior.

When 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.

Joyce Mutisya, the former church treasurer, reports a similar feeling of transformation. Back by her orange grove, she says she was among the small group who did go to the hospital, where she was given pills to bring down her blood pressure.

The effect on her mind was noticeable.

While she still has a hard time keeping track of her keys, she's no longer forgetting more significant aspects of her life. Now, she says, "I can make plans with friends and still remember it when they show up."

But best of all is the sense of peace. "Before," Mutisya says, "I was so stressed wondering what was happening to me. Having someone you can talk to about this – it felt like God's grace."

Your turn: Has you family faced a diagnosis of dementia for a loved one?

Has someone in your family been diagnosed with dementia? What did it mean for you and your family when you got the news? Email us at [email protected] with the subject line "Diagnosis" and we may include your story, after checking with you, in a future story on NPR.org. Please include your name and location and the best way to contact you. Submissions close on Monday, October 30.