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Searching for dignified model of 'being there'

By WEI WANGYU | China Daily | Updated: 2026-03-31 10:15
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As Alzheimer's disease spreads across aging societies, it has become more than a medical diagnosis. In the United States and China, two sharply contrasting models of dementia care have taken shape, characterized by healthcare systems and deeply-rooted social values.

In the US, Alzheimer's care is largely institutionalized. Professional caregivers, memory-care units, insurance coverage and legal frameworks structure daily life for patients and families alike. Responsibility is distributed through contracts and protocols, allowing families to step back from "being there" with hands-on care while remaining decision-makers and advocates.

In China, by contrast, families remain the primary caregivers, often by necessity rather than choice. Long-term dementia care unfolds inside homes, with adult children or elderly spouses managing daily routines, medical decisions and emotional labor.

"This is not simply a difference in resources," said Jing Jun, professor of medical sociology at Tsinghua University. "It reflects different moral assumptions about whom care belongs to."

In the US setting, care is often framed as a service, such as something delivered by trained professionals within regulated environments. Safety, efficiency and liability are paramount. Families may feel guilt, but rarely social condemnation, for relying on institutions.

While in China, care is understood as an obligation embedded in kinship. Sending a parent to a nursing home can still carry moral stigma, associated with abandonment or unfilial behavior. As a result, families often push themselves to physical and emotional limits before seeking institutional help.

"Filial piety has not disappeared,"Jing said. "But it is under intense pressure from demographic change and medicalization."

That pressure is particularly acute in dementia care. As medical technologies expand, families are asked to authorize feeding tubes, repeated hospitalizations and invasive interventions. In many cases, refusing treatment is emotionally indistinguishable from refusing care.

"In practice, devotion becomes measured by how much medical intervention a family is willing to approve," Jing said. "This creates moral suffering."

Different ideas of dignity also shape care practices. In the US, dignity is often linked to autonomy and risk avoidance. Patients are protected from harm, sometimes at the cost of spontaneity or familiarity. In China, on the other hand, relational presence also plays a significant role in dignity.

Yin Shushan, a gerontology scholar from Peking University, said both approaches carry hidden costs.

"The US system reduces family burden, but it can unintentionally distance care from everyday life," Yin said. "Chinese families preserve intimacy, but often at the expense of caregivers' health and economic stability.

"There should be one model that challenges the false binary between family care and institutional care," Yin said. "Ideally, it should suggest that dignity doesn't require choosing one over the other."

As China's population ages rapidly, experts caution against importing Western-style institutions wholesale. Large-scale facilities may relieve families, but risk eroding the relational foundations of care. At the same time, romanticizing family sacrifice ignores the structural limits families face, such as smaller household sizes, geographic mobility and rising care demands.

"The future of Alzheimer's care in China will depend on whether institutions can support families without replacing them," Jing said.

That support, experts argue, must extend beyond beds and buildings. It includes caregiver training, community-based services and cultural reframing — recognizing that choosing comfort over intervention can also be an ethical form of care.

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