Experiences and Burden of Family Caregivers of Older Adults with Chronic Life-Limiting Illnesses in Sub-Saharan Africa: A Scoping Review

In many parts of the world, the way people grow old is changing. As medicine and sanitation improve, more people are living longer, but they are also living with long-term health conditions that do not go away, such as heart disease, diabetes, or memory loss. These conditions require constant attention, from managing daily routines to handling complex medical needs. In Sub-Saharan Africa, where formal nursing homes and professional care services are often scarce or unavailable, this responsibility falls almost entirely on families. It is a system built on deep cultural values, where caring for an elder is seen as a moral duty and a way to honor one's parents. However, as families face modern challenges like urbanization and economic pressure, the people providing this care are often left to manage immense physical and emotional demands with very little help from the outside world.

A new review of research brings these hidden struggles into focus. Catherine Osei, a researcher at Kwame Nkrumah University of Science and Technology, gathered and examined fifteen different studies conducted across seven countries in Sub-Saharan Africa between 2011 and 2025. These studies, which included interviews, surveys, and observations, focused on the people—mostly spouses, children, and grandchildren—who provide unpaid care to older relatives with life-limiting illnesses. The goal was not to test a new medicine or a specific treatment, but to map out the full landscape of what it feels like to be a family caregiver in this region. By looking at the evidence from Ghana, Nigeria, South Africa, Kenya, Uganda, Ethiopia, and Malawi, the review paints a clear picture of a system where families are the backbone of care, yet they are often left to carry the weight alone.

The most consistent finding across all these studies is that caregiving is a heavy, multi-layered burden. It is not just one problem, but a combination of physical exhaustion, emotional distress, financial strain, and social isolation. Caregivers often describe being physically worn down from helping with basic tasks like feeding, bathing, and moving their relatives, leading to chronic fatigue and their own health problems. At the same time, the financial toll is severe. Many caregivers must stop working or reduce their hours to provide care, which shrinks the family income while the costs for medicine and transport rise. This creates a cycle where the act of caring for a loved one can push the caregiver into poverty. Socially, these individuals often find themselves cut off from their communities, unable to attend religious services, visit friends, or participate in family gatherings because their time is entirely consumed by the needs of the person they are caring for.

Beyond the physical and financial strain, the emotional landscape is complex. Caregivers frequently report feelings of anxiety, sadness, and fear, especially when they watch a relative's condition worsen or when they face uncertainty about the future. The stress is often highest when caring for someone with dementia or advanced cancer, where the person's needs change rapidly and can be unpredictable. Yet, the review also found that this burden is not the whole story. Many caregivers also speak of a deep sense of purpose and fulfillment. They find strength in their religious faith, in the support of their extended family, and in the cultural belief that caring for elders is a sacred duty. This sense of meaning helps them endure the hardship, acting as a source of resilience that keeps them going even when resources are scarce.

The review highlights that the way society is structured plays a huge role in this experience. In many of these communities, women are expected to be the primary caregivers, often balancing the care of an elder with raising their own children and managing a household. This gendered expectation means that women bear a disproportionate share of the burden, often without the option to ask for help. Cultural norms also discourage families from seeking outside assistance or placing elders in institutions, reinforcing the idea that the family must handle everything internally. While this strengthens family bonds, it also means that caregivers often feel they cannot admit they are struggling or that they need professional support.

Perhaps the most critical finding is the gap between what caregivers need and what the health system provides. The studies show that families are often left to manage complex medical tasks without proper training. They are sent home from hospitals with instructions they do not fully understand, facing difficult symptoms like pain or breathing problems with no guidance. There is a widespread lack of access to palliative care, which focuses on relieving suffering and improving quality of life, as well as a shortage of respite services that would allow caregivers to rest. Communication with doctors is often poor, leaving families feeling excluded from decisions about their loved ones' care. The review suggests that without a significant shift in how health systems operate, the current model of relying on unpaid family care will become unsustainable as the population continues to age.

The researchers conclude that while family caregivers are the foundation of care for older adults in Sub-Saharan Africa, they are currently operating in a system that offers them too little support. The evidence points to an urgent need for changes that recognize the vital role these families play. This includes creating policies that provide financial protection, offering structured education to help caregivers manage medical tasks, and integrating palliative care services into local communities. It also means building support systems that respect cultural values while acknowledging that families cannot do it alone forever. By investing in the well-being of these caregivers, health systems can improve the quality of life for both the older adults receiving care and the family members who dedicate their lives to helping them. The path forward requires a shift from viewing caregiving as a private family matter to recognizing it as a public health priority that demands resources, training, and compassion.