Caring in the Shadows: The Lived Experiences of family Caregivers of Older Adults with Dementia in Fragile and Conflict-Affected Setting in Ethiopia

Imagine the human mind as a complex, bustling city. Over time, in some people, the roads start to crumble, street signs vanish, and the lights in the buildings flicker out. This is dementia: a condition where memory and thinking skills slowly fade, making it hard for a person to do the things they used to do every day. Because there is no magic cure or instant repair crew for this crumbling city, the people who love the person living with dementia—usually family members—have to step in. They become the new city managers, the guides, and the protectors. This job is called "caregiving."

Now, imagine trying to manage this crumbling city while the ground beneath you is shaking, the power grid is broken, and the roads to the supply stores are blocked. This is the reality for many families in places affected by war and conflict. When a country is recovering from a fight, hospitals might be empty, neighbors might have moved away, and money is hard to find. This paper explores what happens when a family has to care for a loved one with dementia in exactly this kind of difficult, shaky environment. It asks: What does it feel like to be the person holding everything together when the world around you is falling apart?

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The Invisible Backpack: A Story from the Shadows

This research paper, titled "Caring in the Shadows," dives into the real-life stories of 25 family members in Northern Ethiopia who are caring for older relatives with dementia. The researchers, a team from universities in Ethiopia and Brazil, didn't just ask questions; they listened deeply to the lives of these caregivers between August 2025 and June 2026. They wanted to understand the "lived experience," which is a fancy way of saying: "What is it actually like to wake up every day and do this job?"

The study found that for these caregivers, life isn't just a little bit harder; it is a total transformation. Here is what they discovered, broken down into four main chapters of their story.

Chapter 1: The Job You Didn't Apply For

Imagine you are walking down the street, planning your future, and suddenly a heavy backpack is dropped onto your shoulders. You didn't ask for it, you weren't trained to carry it, and there is no instruction manual. That is how these caregivers described falling into their role.

For most, there was no big meeting where the family said, "Okay, you are the new caregiver." Instead, it just happened. One day, a parent or grandparent started forgetting things, and the next day, the daughter or son found themselves responsible for everything. The paper suggests this transition was often abrupt and unstructured. One daughter, 34 years old, said, "No one really asked if I was ready… It all changed very quickly."

Once the backpack was on, it never came off. The researchers found that caregiving became a "totalizing" role, meaning it swallowed up the person's entire life. Their days were no longer their own; they were dictated by the needs of the person with dementia. From waking up before the sun to checking on them all night, the caregivers lived in a state of constant alertness, like a lighthouse keeper who can never sleep because the sea is too rough.

Chapter 2: The Weight of the Backpack

Carrying that invisible backpack takes a massive toll. The study identified four heavy weights that these families were forced to carry:

1. Physical Exhaustion: The body gets tired in a way that sleep doesn't fix. Caregivers described lifting, moving, and watching their loved ones 24 hours a day. One son mentioned his back hurt so much from lifting his mother that he wanted to stop, but he couldn't because "there is no one else."
2. Emotional Drain: This is perhaps the heaviest part. Caregivers watch the person they love slowly disappear. One husband described the pain of his wife not recognizing him anymore: "She looks at me like… I am a stranger, and that hurts deeply inside." It's a special kind of sadness called "ambiguous loss," where the person is physically there, but the person you knew is gone.
3. Money Woes: The backpack also has a financial anchor. Many caregivers had to quit their jobs to stay home, meaning the family lost income. At the same time, they had to spend money on medicine, food, and transport. One spouse said, "There is no income anymore, but the expenses are increasing every day."
4. Isolation: The backpack is so heavy and the job so demanding that caregivers can't leave the house. They miss out on parties, community gatherings, and even seeing friends. One daughter noted that people stopped inviting her because she was always too busy or too tired to say yes.

Chapter 3: Walking Through a Broken City

This is where the story gets unique. These families aren't just dealing with dementia; they are dealing with the aftermath of a war. The researchers call this "post-conflict precarity."

Imagine trying to fix a broken toy while the factory that makes the parts has been destroyed. In Northern Ethiopia, the conflict had damaged the health systems, scattered families, and made it hard to find basic supplies. Caregivers told stories of searching for medicine that didn't exist, or clinics that had no staff. One son said, "During the conflict, everything stopped… proper care was not even something we could think about then."

Even after the fighting stopped, the damage remained. Services were still shaky, and many families had lost their homes or other relatives who used to help. One caregiver explained that her brother, who helped with care, died during the conflict, leaving her to carry the entire burden alone. The war didn't just happen in the past; it was a shadow that made every single day of caregiving harder.

Chapter 4: Finding a Reason to Keep Walking

So, if the backpack is so heavy, the city is broken, and the road is blocked, why do they keep going?

The paper suggests that the answer lies in "meaning-making." Despite the exhaustion and the pain, these caregivers found a deep sense of purpose. They viewed their role not just as a chore, but as a moral duty and an act of love. In their culture, taking care of your elders is a sacred responsibility.

One son said, "It is my duty to care for him… That sense of responsibility keeps me going." Another daughter explained that when she felt like giving up, she reminded herself that her father depended on her, and that thought gave her strength. They didn't see themselves as victims, but as survivors. They transformed their identity from "someone who has a job" to "a caregiver," and in that shift, they found a quiet, stubborn kind of endurance. They kept walking, day after day, not because it was easy, but because they had no other choice and because they loved the person they were caring for.

What This Means for the Future

The researchers conclude that caring for someone with dementia in a place like Northern Ethiopia is an incredibly demanding experience that changes a person's life forever. The war didn't just add a little extra stress; it multiplied the existing challenges of poverty, health issues, and emotional strain.

The paper suggests that we can't just expect families to carry this heavy backpack forever without help. The authors recommend that governments and communities need to step up. They say we need better support systems, training for families, and policies that understand the unique struggles of people living in post-war areas. Until then, these families will continue to care in the shadows, carrying the weight of love and duty in a world that is still trying to heal.