Weekend Long Read: Dealing With Dementia

The China Alzheimer Report 2024 reveals that approximately 17 million people in China struggled with Alzheimer's or other forms of dementia in 2021, making up about 30% of the global total. This issue is exacerbated by the country's aging population and an undeveloped social support system, presenting a formidable challenge for many Chinese families tasked with eldercare [para. 1].

Dong De, a photojournalist, documented his grandmother's decade-long struggle with dementia, conveying how her deteriorating condition fundamentally altered his father's life and the family's daily routine [para. 2]. His father, primary caregiver to his grandmother, became depressed due to the relentless burden of caring for her [para. 3]. This scenario, compounded by China's aging population—which is projected to encompass around one-third of the total populace by 2050—casts doubt on whether the country's cultural practice of filial piety can withstand the intensive demands of caregiving [para. 4].

The onset of his grandmother's dementia was triggered by a car accident that left her bedridden for an extended period. Over time, her cognitive decline worsened, resembling the mental state of a child, further complicating the caregiving dynamics [para. 5][para. 6]. Initially, the family managed their roles by establishing a caregiving schedule, but as her condition declined, family members faced increasingly challenging behaviors and the social implications of these changes [para. 6][para. 9][para. 10].

A particular challenge for the family was adapting to the reversal of the traditional household hierarchy; what once was a matriarchal figure became someone needing care and attention similar to that of a child [para. 7]. This shift caused familial strain, especially for Dong’s father who found the experience emotionally taxing, likening care for the elderly to a hopeless task in contrast to the rewarding experience of raising children [para. 12][para. 13]. Eventually, his father was diagnosed with depression after years of caregiving stress [para. 5][para. 16].

Despite suggestions to seek professional care, traditional beliefs in filial piety influenced decisions, leading to resistance against hiring external caregivers or admitting his grandmother to a care home, which in his father's view was irresponsible and akin to abandoning her [para. 22][para. 23]. Even when a caregiver was hired, his father continued to struggle with guilt while selflessly overseeing his mother's needs [para. 28].

Recent developments, including his grandmother's severe decline in mobility and cognition, have pushed the boundaries of familial support, necessitating a shift in caregiver roles and amplifying the need for professional assistance [para. 33]. As the grandmother's health waned, intense caregiving duties further magnified the family's strain, emphasizing the pressing need for structured support and highlighting cultural challenges inherent in eldercare [para. 39].

These struggles prompt reflections on the need for compassionate end-of-life care choices, including assisted dying, as expressed by Dong’s father, who foresees a future where preserving dignity in old age might demand difficult decisions [para. 44][para. 45]. This poignant narrative underscores not only the personal impact of dementia on families but also raises critical questions about societal readiness and policy responses needed to address the rapidly growing needs of an aging population in China [para. 50][para. 53].