A startling revelation has emerged from a recent study, shedding light on the challenging reality faced by older dementia patients in Singapore. But here's where it gets controversial: the study uncovers a widespread reliance on potentially burdensome interventions, raising questions about the quality of end-of-life care.
The research, conducted by Duke-NUS Medical School, found that the vast majority (92%) of community-dwelling older adults with advanced dementia in Singapore undergo at least one burdensome intervention in their final year. These interventions, such as feeding tubes and restraints, are often considered low-value and may not enhance comfort or survival. This is a stark contrast to the caregivers' stated goal of prioritizing comfort.
The study, published in the Journal of Gerontology: Medical Sciences, highlights several critical issues:
- Overuse of Medical Interventions: Almost all older adults experienced taxing interventions, including antibiotics, IV fluids, and feeding tubes or restraints. The use of tube feeding is particularly concerning, as it often leads to physical restraints, despite clinical guidelines recommending hand feeding. And this is the part most people miss: the proportion of tube-fed older adults in Singapore is significantly higher than in Western countries.
- High Hospitalization Rates: Nearly half of the older adults were hospitalized for at least one night in their last year, with 35% dying in the hospital. This is a notable difference from Western studies, where long-term care facilities are the primary place of death. The increased hospitalization may expose patients to unnecessary and costly treatments with limited benefits.
- Caregiver Burden: Family caregivers bear a significant burden, with many providing over 60% of total care and sacrificing their jobs. On average, they provide 42 hours of care per week, equivalent to a full-time job, which underscores the immense dedication and sacrifice of these caregivers.
- Lack of Caregiver Support: Most caregivers feel ill-equipped due to insufficient information and communication. Only 15% were informed about their loved ones' life expectancy, indicating a critical gap in end-of-life preparedness.
The study's data was sourced from the PISCES longitudinal cohort, where researchers surveyed family caregivers of advanced dementia patients every four months from 2018 to 2023. Interestingly, while caregivers prioritized comfort, a significant proportion (31%) also valued prolonging life, especially among children of the older adults.
Dr. Ellie Bostwick Andres, the study's lead author, emphasizes the need for a palliative approach at home to reduce unnecessary interventions and improve symptom management. She also highlights the importance of supporting family caregivers in an aging society like Singapore.
Associate Professor Chetna Malhotra, the senior author, points out that cultural values in Asia can influence care decisions. Children with strong filial values may prioritize prolonging life over palliative care. This suggests that promoting palliative care in Asia requires tailored strategies and caregiver education.
The study's insights are already making an impact, with tools like the CareBuddy app and decision aids being developed to support caregivers. Professor Patrick Tan, from Duke-NUS, underscores the human reality of dementia care in Asia, marked by love, sacrifice, and tough choices. He advocates for building compassionate care systems that support both patients and caregivers.
This research, funded by the Singapore Ministry of Health, is part of Duke-NUS' commitment to improving care for the seriously ill and their caregivers through innovative research and education. It raises essential questions about the balance between medical interventions and quality of life for older dementia patients, inviting further discussion and reflection.
