Caregiving experiences of older-adult informal family caregivers for older adults with comorbid dementia and physical disability: A qualitative study using the caregiving stress-process model

In many parts of the world, the population is getting older, and a growing number of people are living with both memory loss and physical limitations that make daily tasks difficult. When these conditions occur together, the need for constant, hands-on help becomes intense. Often, the people providing this help are not professional nurses or hired assistants, but the aging spouses, children, or siblings of the person who is ill. These caregivers are themselves elderly, sometimes dealing with their own health issues while trying to care for someone who cannot move or think clearly. This creates a unique and heavy situation where the person giving care and the person receiving care are both in their later years. Researchers have long known that caring for someone with dementia is stressful, but they have often studied the physical and mental challenges separately. They have also tended to look at caregivers who are middle-aged or younger, missing the specific struggles of those who are already old themselves. Understanding how these older caregivers experience their daily lives is crucial because their well-being directly affects the quality of care their loved ones receive and the stability of the family unit.

A team of researchers in Shanghai, China, set out to understand this specific experience by listening to the stories of thirteen older adults who were caring for relatives with both dementia and physical disability. They chose to focus on people aged sixty and older who were the primary caregivers, meaning they were the main person responsible for the daily needs of the patient. The researchers conducted long, open conversations with these caregivers, asking them to describe their days, their worries, their relationships with family, and how they felt about the future. They did not just ask for simple answers; they invited the caregivers to tell their full stories, allowing the researchers to hear the nuances of their lives. The goal was to map out the entire journey of caregiving, from the family circumstances that led to this situation, through the daily pressures they faced, to the resources they had to help them cope, and finally, to how they felt about the whole experience.

The researchers found that these older caregivers were often trapped in a difficult situation before they even began their daily tasks. Many came from families with only one child, meaning there was no one else to share the load. Cultural expectations also played a huge role; the deep-seated belief that children must care for their parents at home made many caregivers feel that sending a loved one to a nursing home was a failure or a betrayal. Furthermore, the available professional care services were often not enough. Public hospitals and care facilities could not provide the kind of personalized attention or specific dietary needs that a bedridden person with dementia required. This lack of support meant that the burden fell almost entirely on the shoulders of one person, usually the spouse or the only child.

As the days went on, the physical and mental toll became overwhelming. The caregivers described being woken up repeatedly in the middle of the night to help with bathroom needs or to calm a confused relative, leaving them with fragmented sleep and constant exhaustion. They faced difficult decisions alone, such as whether to use certain medical treatments or how to handle emergencies, without the ability to consult with siblings or other family members. Their social lives vanished; they could no longer travel, dance, or meet friends because they were tied to the home. In some families, the stress led to arguments between spouses or with other relatives who did not fully understand the intensity of the situation. The caregivers felt isolated, with their own health problems worsening under the strain of constant work.

Despite these heavy burdens, the support systems available to them were limited. Government programs designed to help, such as long-term care insurance, provided only short visits from helpers, usually just an hour every few days, which was not enough to give the caregiver a real break. Family members who lived away or had their own jobs could not offer consistent help. When the caregivers felt overwhelmed, they had few places to turn for professional emotional support. Instead, they relied on their own inner strength, telling themselves to be more open-minded or to endure the pain, often hiding their tears and fears from others. The researchers noted that while some external help existed, it was not sufficient to relieve the deep, cumulative stress these older adults faced.

Yet, the story was not entirely one of suffering. The researchers discovered a complex mix of feelings. Alongside the physical exhaustion and emotional drain, many caregivers found a deep sense of meaning and connection. Caring for a spouse or parent allowed them to honor past sacrifices and strengthen their bond. Some felt a sense of duty and love that gave them the strength to keep going, even when they were tired. However, this positive feeling existed alongside a constant, low-level anxiety about the future. They worried about what would happen when their own health declined or when they could no longer provide care. Most strongly resisted the idea of institutional care, believing that nursing homes could not provide the personalized love and attention their family members needed.

The study suggests that the current system of care in China is not fully equipped to support this growing group of older caregivers. The researchers recommend that policies need to change to provide more substantial help, such as longer home-visit services, better access to temporary relief care, and professional psychological counseling. They also suggest that healthcare workers should train families on how to care for their loved ones safely to reduce physical strain. By understanding the full picture of these older caregivers' lives—their structural constraints, their daily stressors, their limited resources, and their mixed emotional outcomes—communities and policymakers can begin to build a support system that truly meets their needs. This research highlights that while the love and duty of family are powerful, they are not enough on their own to sustain the heavy burden of caring for an aging relative with complex needs without significant help from society.