Dementia, caregiving, and reality in one of the world’s poorest countries, Madagascar [EN]🇬🇧
In April this year, I decided to travel to Madagascar, one of the world's poorest countries. I wanted to experience a completely different society and culture for new perspectives.
I contacted Madagascar's Alzheimer Association already in May and asked if I could meet them to gain insight into tha status of dementia and the caregiver role in this country, because that was very much part of my purpose for the trip.
That is how I came into contact with Muriel. We agreed that I would interview a doctor, a family caregiver, and Muriel herself, who is the vice president of the Alzheimer Association.
These conversations are now part of my curious exploration of the caregiver role and dementia in different countries, seen from one of the world's richest nations (Norway) to one of the poorest (Madagascar).
The goal is simple: To make the invisible work visible – and give caregivers a voice.
The interviews
I had invited the doctor, the caregiver, and Muriel to my hotel, Le Louvre, located in the "financial district" of the capital, Antananarivo. Even this area, like most others I have visited, shows clear signs of deep poverty. I cannot step outside the hotel door without being asked to buy something or give money to small children, teenagers, and adults.
I had prepared well for this meeting, and I was also nervous. The interviews were to be conducted in French and English, and I am not particularly good at speaking French – even though I understand quite a bit. I planned to record the interviews on video via my computer, audio for the podcast, and via Nomono (audio), and I had sent them all my questions in advance. The goal is to create some video clips, a podcast episode, and an article.
I rented a conference room and set everything up, ordered coffee and croissants. Then they arrived, and I greeted each of them politely and respectfully.
And then we began. I started the audio recorder and the video recorder.
During the three hours we spent together, I learned a lot from these generous and committed people.
Below you will therefore find three different perspectives on dementia care in Madagascar.
Caregiver perspective:
Holy has been responsible for her father with Alzheimer's for over 13 years.
The family's housekeeper called Holy in 2009 and said that "something is wrong" with her father. He had become a widower three years earlier, and Holy's siblings were all living abroad. Holy was the only one who was able come home and take care of him. What at first glance might have seemed "normal" turned out to be the beginning of a long life as a caregiver for a father with Alzheimer's — in a country where the illness is still often described as being possessed by "demons" or simply madness.
Holy was working in the north of Madagascar when the call came. The housekeeper, who had been like a daughter to her parents, told her that she could no longer handle the situation alone.
She said to Holy: "It's now very difficult to help your father, so it has to be you, the close family, who must assist him."
Holy is the only sibling living in Madagascar. She sees it as her responsibility to travel to Antananarivo, move in with her father — and stay.
When her dad becomes obsessive with money
The first sign that something is truly wrong has nothing to do with forgotten words — but with money.
Her father, who had always let her mother manage the finances, begins to suspect that the housekeeper is stealing. Then he suspects his daughter. He wants to count the money every single evening, demands to see how much has been spent and how much is left.
"We did the same calculation three or four times. He was never satisfied."
Holy tries to help him count, but he only becomes more suspicious. The money is hidden in pockets. In the evening the money is gone. They search. She starts keeping lists. To maintain peace, they pretend to "find" the money somewhere.
Holy said her father trusted no one.
Joking about Alzheimer's
In the beginning, Holy does not connect any of this to illness.
"In Madagascar we joke: If you have Alzheimer's, you forget everything. But you never forget your money."
Like many others, Holy associated Alzheimer's with forgetting — but not with the need for financial control, suspicion, and restlessness. Only later, when her father begins accusing more people of theft and the money keeps "disappearing," does she sense that something more serious is happening.
Moving in — and staying
From 2009 onward, she lives permanently with her father. Her siblings still live in Europe. The housekeeper and the housekeeper's young niece become part of the care team around him. They are the ones who bathe him, dress him, accompany him to the toilet and provide respite — and they are also often the ones he suspects of stealing.
"I haven't had much physical help, apart from the housekeeper and her niece. Now I am calmer, a little better, because I have people around me."
The 20-year-old niece smiles, because her father thinks she is his granddaughter. She calms him with her warmth and gentle nature. When she comes to the kitchen table in the evening and takes him to the toilet, the acceptence of receiving help is higher, than when his own daughter tries. He feels safe with the young girl.
Prayer as a coping strategy
When I ask Holy where she finds her strength, she answers without hesitation: from my faith and my prayers.
"I know that God is there, he hears my prayer, and we really see changes."
When her siblings, who are so far away, ask her to be patient and "not get angry," her faith and her prayers also become a place to put her frustration. And later, when the siblings come to Madagascar to celebrate their father's 70th birthday, they experience firsthand what she deals with every day — in the bathroom with their father, with clothes that don't always go on correctly, and all the resistance. Only then they understand the great changes in their fathers behaviour.
When the family is no longer there — and the neighbors get scared
Her father has ten children and has always had a big family around him. Before the illness he was gentle and kind — the one everyone came to with their problems.
With time he becomes suspicious, aggressive, and fully dependent on help even for using the toilet and daily care.
"The family is scared, and that's why they don't come. They are scared of his decline."
Holy explains that many relatives cannot bear to see him like this — not only out of compassion, but from their own fear: "What if I also become like this?"
That her dad depends on her help for everything breaks with the idea of aging with dignity.
Between demons, witches, and the healthcare system
In the neighborhood, it is still common to interpret illness as something demonic or "witch-like." Aggression and unpredictable behavior are frightening for both family and neighbors.
"Many believe that Alzheimer's is madness, that my father is possessed by demons."
At the same time, she encounters a healthcare system with major gaps: a shortage of doctors, disagreement about medication, and very little follow-up. Many good doctors leave and move to France, as they share the language and France offers better working conditions. Several doctors are sceptical of treatment. Medication she knows is effective, becomes difficult to give because her father is afraid of anything related to medicine. And at the same time, medicine is very expensive.
The center that gives her (and him) space to breathe
The Madagascar Alzheimer Association has established a day center that becomes a turning point for them. Her father can stay there during the day, and she gets a few hours without constant care and responsibility. She also participates in caregiver groups and learns more about the illness.
"That was when I began to understand a bit more about how he thinks."
Holy explains that she had to stop working to care for him, and mentally she prepared herself for his death. But the years pass. He does not die. The two of them continue living together — with the illness between them, and with a small, warm network around them.
Fearing for her own future
When I ask her, "Are you afraid of getting Alzheimer's yourself?" she answers yes, immediately. She describes that she forgets things after a surgery she has had, and she has experienced incorrect medication and a gnawing worry, often thinking: is this how it begins?
The personal and genetic elements sit close: she has followed her father's progression step by step, knows every turn in the disease, and it is impossible not to think: "What if this becomes me?"
Her strength is not hers alone
Toward the end of the interview, she emphasizes that her strength is not hers alone.
"I have strength, but it is first and foremost my housekeeper who has the real strength. She does everything!"
The housekeeper, who has known her parents for decades, grieved as if she had lost her own mother when Holy's mother died. She is almost illiterate, yet in practice she carries a large part of the care — day and night.
When Holy had to travel for surgery, it was this woman who helped. The two of them — the daughter and the housekeeper — become a care team for a man and an illness that really requires an entire system.
What this story says about Madagascar — and about us
Holy's story is deeply personal: it is about faith, family, finances, extended family, housekeepers, lack of healthcare services, and a day center in the capital. But it also reaches beyond Madagascar.
She carries the main responsibility alone. She encounters siblings who lack understanding and the ability to contribute. She feels shame over her own feelings while doing everything for her father, all while fearing her own future.
I feel that this is a story that could just as easily have been told in Norway, but here it unfolds in a country marked by enormous poverty and without any national plan. Where medication, diapers, and healthcare are too expensive — in a culture where dementia is still explained as being possessed by demons. And where a small, understaffed volunteer center becomes the salvation for both patient and caregiver.
Volunteer perspective:
Muriel Rason-Andriamaro – Vice President of the Madagascar Alzheimer Association
When Murielle's grandmother developed Alzheimer's in the 1980s, there was no internet, no Facebook, and no shared language for the illness in Madagascar. The family stood completely alone. When her grandmother died, Muriel's mother made a promise: no one else should have to go through this without support. That is how the organization Madagascar Alzheimer was born.
Not able to understand her grandmother
Muriel explains that when her grandmother became ill in the 1980s, no one had any idea what was wrong. Her behavior changed, she no longer recognized her daughters, and the word "Alzheimer's" did not exist in their world.
"At that time we knew nothing. There was no internet, no Facebook, nothing. We had to handle everything completely on our own, without any knowledge."
Only toward the end of her grandmother's life did the suspicion of Alzheimer's arise — through a brother who lived in France, a country where the illness was just beginning to be recognized.
The promise
When Muriel's grandmother died, her mother made a decision.
She promised, with all her heart, that she would establish an organization to help other people facing the same illness. She wanted to give them the support she never received herself.
A year later, she founded Madagascar Alzheimer with her sister. With no money. No plan. Only a painful and difficult experience neither of them had asked for — and a strong and clear decision to do something for others. There are 30 million people on the island of Madagascar; many need help.
Today, more than 30 years later, the organisation still exists in Antananarivo. Resources are still extremely limited, yet they offer:
• a day center for people with dementia
• support groups for caregivers once a month
• volunteers and a few staff members
• communication and assistance via telephone, WhatsApp, Facebook, and other social media
"We receive no support from the authorities. I think it is because the illness is not a priority. We are still a low-income country."
Still, it is us the families call when a mother no longer recognizes her children, when a father begins to wander aimlessly, or when neighbors begin whispering about demons and witchcraft.
When shame loosen its grip
In the early years of the center, families were afraid and silent, and the stigma was enormous. Now Muriel notices a shift.
"People are a little more informed, and many are less shy. They come to the center, they call, they ask questions and request information."
Their annual events for World Alzheimer's Day have grown into a full month of campaigns throughout September. Social media allows them to reach far — even into rural villages they could never visit physically.
A day center for dignity
At the heart of their work is the day center. Here, people with Alzheimer's come, their families come, and older adults without a diagnosis who risk isolation also find their way.
"What we do is give these people dignity."
In a society where dementia is often interpreted as witchcraft or possession, and where a person with dementia in the community may face ridicule and stigma, the day center becomes a place where no one judges.
They initiate activities, cook, play music, sing, and build community. At the center, they see the person, not just the illness.
"We try to bring them joy. I think that is the main goal. Joy is what keeps us going — seeing people smile, dance, remember things."
Muriel explains that they intentionally avoid the word "dementia," because in Madagascar it is associated with being "stupid" or a "fool." They instead speak of Alzheimer's and "related diseases" — to avoid further stigma.
Caregivers who carry double burdens
In the support groups, a pattern emerges that is also familiar in Norway: the primary caregiver carries both the illness and the family conflicts.
"They must handle the illness of their mother or father every day — and at the same time the relationship with their siblings. Those who do not participate in the care often criticize the one who does: You're doing it wrong. These comments increase the burden enormously."
In the meetings they host, they try to create safe spaces. Here a daughter can say she is angry, tired, sad — without being corrected.
"Just being able to say everything makes them leave feeling lighter. They leave part of the burden with us."
A country with its own inner demons
Madagascar has a strong belief in spirits, demons, and traditional rituals. Muriel describes how many still interpret symptoms as signs of a curse or possession. Families bring the ill person to the village elder or healer for "cleansing" or "exorcism."
"We do not believe this is the right way to handle the illness, but it stems from lack of information."
Their task is to shift the explanation — from demon to disease — without challanging people's beliefs. That requires language, time, and deep respect.
The dream: a national plan and a night center
When I ask what would make the biggest difference, she is very clear:
"The most important and most effective tool would be a national plan. A national plan, and nothing less."
In addition, the volunteers in the organization dream of building a center just south of Antananarivo — a place where family members can receive day- and nightcare for short periods, not to "park" their parents, but to breathe.
"They cannot give what they do not have. They need an offer that allows them to recharge, both physically and mentally."
What motivates Muriel?
For Muriel, this is not just a project. It is personal. She grew up with a grandmother she never truly had the chance to know — and with a mother who cried when she walked Muriel to school, because she carried all the burden by herself.
"When she died, I felt that I had lost something important. I thought: I must honor my grandmother. And I must support my mother — now also as president of the organization."
Today, at 82, Muriel's mother — the founder — is still at the center helping out. The daughter carries the work forward — for her grandmother, for her mother, and for everyone else who should not have to face the caregiver role entirely alone.
The medical perspective:
Doctor Solomon Rakoto
In Madagascar, there are no statistics on how many people live with dementia. Yet neuropsychiatrist Solomon Rakoto encounters the consequences every single week. In a country with limited resources, low income levels, and no data, he believes that three words matter more than medicine: tolerance, respect, and compassion.
A country without statistics
Rakoto is a neuropsychiatrist, educated and practicing in Madagascar. He is now retired but still works at the clinic. He tells me that no epidemiological studies have ever been conducted on memory problems, dementia, or Alzheimer's in Madagascar.
"We have no measurable knowledge about this in Madagascar because no studies have ever been conducted. No studies on memory, dementia, or Alzheimer's, neither academic nor research-based."
When he thinks through his patient lists, it is not the elderly who fill the waiting room. It is the young — students and youth — who also complain about memory problems. Older people feel the changes but rarely put them into words, and even more rarely do they end up in any statistics.
Tests that don't fit the culture
Dr. Rakoto explains that the diagnostic tools available to him are imported from Europe. They are not designed for Malagasy lives or society.
"The tests we use were created abroad, and it has been suggested that we use them here. But they are not validated for Malagasy patients."
Tests containing questions about time, place, and references to cities or institutions give completely inaccurate results when the patient has never been there, does not know the names, and does not speak French. The questions are read aloud in French and translated into Malagasy. The patient responds in their own words, and then the answer must be forced into a form it does not really fit. It does not work.
The first encounter is not the doctor
In Norway, the general practitioner is often the starting point for a dementia diagnosis. In Madagascar, the path is entirely different. When something concerning occurs, the doctor is not the first person contacted.
"The first person one goes to is usually not a doctor. People go to elders in the village, religious leaders, or other respected figures, such as healers."
This means illness is interpreted through culture, belief, and community before it ever reaches the healthcare system. Many symptoms and behavioral changes are explained as aging, punishment, curses, or something spiritual — not as a disease in the brain.
The medicines he is scared to prescribe
There are medications for memory disorders in Madagascar. But for Dr. Rakoto, the risks are often too great in a weak healthcare system.
"There is a medication with a potential side effect of bleeding. I have actually not dared to prescribe it because if the patient develops internal bleeding, we can lose him."
It is not only about prescribing but about what happens afterwards: Can the patient describe side effects? Can the family reach a hospital in time? Is there even a functioning emergency system?
Instead, he turns to what families actually have: they have each other.
For Dr. Rakoto, it is self-evident that a person with dementia must never be left alone.
"One must never let a person with dementia be alone, not even in their own room."
That is why he insists that all children and grandchildren be present when he gives advice on how to manage dementia. It is not only about information, but about distributing responsibility and expectations across many "shoulders," as he puts it.
In Malagasy culture, solidarity and compassion are deeply rooted. That is why families can — and must — mobilize, even without access to public services.
Three words that means more than any medication
When I ask the doctor what he believes will help the most, the answer is not a pill — it is an attitude.
"I always teach my patients' families three principles:
– Tolerance
– Respect
– Compassion"
When these three are in place, he believes the need for medication decreases — not because the disease disappears, but because the way one lives with it changes. In a country where many lack economic and material resources, this is what is realistically possible to build on.
Religion, spirituality, and misunderstood illness
In Madagascar, faith is a powerful force — but also a major source of misunderstanding.
Dr. Rakoto distinguishes between religion (Christianity) and spirituality (traditional practices). Traditional healers wrap their knowledge in mysticism. Confusion, hallucinations, and behavioral changes are often interpreted as possession, witchcraft, or demons. Families call the healer, not the doctor.
What does Madagascar need now?
I ask the doctor what would create the greatest improvement in the society he serves. He answers with surprising specificity:
• better nutrition — people in Madagascar do not have access to proper and essential nourishment
• better personal care and hygiene, especially related to urine and feces
• validated tests and a professional language adapted to Malagasy contexts
He does not primarily call for major technological solutions, but rather structures that make it possible to live a bit better with the disease — for both patient and family.
It says a lot about the conditions and the status of this country.